Blog

As COVID-19 restrictions and public emergency declarations ease, life doesn’t go back to normal for everyone.

Written by Tammy Milne (PDA TAS Associate Director) and published by ABC News.

When Tammy Milne contracted COVID-19, she said she was “shaken to the core”.

Ms Milne has arthrogrophosis multiplex congenita, which affects her legs. She also has issues with breathing and swallowing.

She uses a wheelchair and has a support worker for several hours a day and overnight.

She is one of many Tasmanians for whom life will not return to “normal” when the state’s public health emergency declaration ends on Thursday night.

Three months ago, Ms Milne was in Hobart visiting her daughter when she contracted COVID-19.

She was staying in a hotel, and, once she tested positive, was unable to receive room service.

Her support worker was unable to help her, and with her daughter also COVID positive, Ms Milne said she was “trapped in a room by myself without any support”.

“It was very traumatic … I was isolated and pretty much in despair,” she said.

Ms Milne organised through the disability COVID hotline to be transported back home to Devonport in the state’s north-west where a support worker stayed with her through her seven days of isolation.

Three months on, Ms Milne said she has also contracted two other viruses, one of which required hospital treatment.

“I think if I got COVID again, I’d be really lucky to survive, and it’s a reality that it will come back again,” she said.

To read the complete article, go to:

https://www.abc.net.au/news/2022-06-30/covid-still-a-problem-for-immunocompromised/101194310?utm_campaign=abc_news_web&utm_content=link&utm_medium=content_shared&utm_source=abc_news_web

Lived Disability Experience vs Disability Sector Experience

Following its election win, the Australian Labor Party has reiterated its commitment “to ensuring that no Australian with a disability is left behind”.

The Hon. Bill Shorten MP’s assigned portfolio as Minister for the NDIS National Disability Insurance Scheme has been widely applauded and appears to be a significant move in the right direction for an Australia working to look after its disabled population.

This overhaul includes review of the NDIA (National Disability Insurance Agency), steps being taken to get the NDIS working properly and ensuring that disability is “no longer an afterthought”. Reassuringly too, steps are seemingly being put in place for policy to be evidence based and those actually reliant on the NDIS being given a place at the co-design table.

However, whilst the NDIA has certainly been a hive of promising activity since our new government took office, there is still a glaringly incongruous demographic in the way that the scheme is being run and managed.

With 1 in 6 Australians living with disability and with rates of disability being shown to be on a rising trajectory, it is crucial that the NDIS addresses the need for representation and inclusion of scheme participants and those with lived disability experience on its Board, Executive and in the role of NDIA CEO.

In the same way that senior roles within indigenous organisations are reserved for applicants of Aboriginal and/or Torres Strait Islander descent, policy must be put in place to ensure that “the NDIS puts people with disability at the centre of the Scheme and includes families, carers, service providers and workers” (wording taken from the ALP’s own website).

But this should just be the beginning of necessary reform in our country.

In an SBS News article, it was highlighted that, of the total 227 parliamentarians today, only one person (or less than half a percent) presents a visible disability – in the form of WA Greens Senator Jordon Steele-John.

Whilst our new parliament embraces the diversity and beauty of our country, this representation of disability is certainly not something to be celebrated.

https://www.sbs.com.au/news/article/australias-next-parliament-has-been-declared-theres-only-one-politician-with-a-visible-disability/a24jj4fow

Our Popular ”EmployABLE” Webinar is now available on the PDA YouTube channel.

Did you miss our recent “EmployABLE” Webinar?

It was a really popular presentation. However, we had a lot of emails and calls from many of you were not able to watch it live, and many who did, asking for it to go up on on PDA’s YouTube channel.

Great news!

Now you can watch this incredibly informative and helpful webinar online and learn about the support and opportunities available to assist PWD step onto and advance up the employment ladder.

So, whether you’re looking to enter mainstream employment, thinking of starting up your own small business or just wanting to have a better understanding of employer obligations in employee recruitment and reasonable workplace adjustments- this webinar is a must view.

PDA’s incredibly knowledgeable panel has many years of lived experience between them and present a valuable tool for anyone with an interest or need to better understand Australia’s employment sector and the issues particularly relevant to people with disability.

Paul Williamson – Researcher
Mark Pietsch – CEO of Ability Links and Disability Advocate
Tammy Milne – Journalist and Disability Advocate
Sarah Styles – Owner of Wheelie Good Productions
Sharon Boyce – Disability Advocate, University Lecturer, Author and Education Consultant

You can view it by going to:

https://www.YouTube.com/watch?v=crxJTZjOkU4

Whilst you’re there please make sure that you subscribe to our YouTube channel.

After you have watched this webinar we also ask you to take part in out short survey by going to:

https://www.surveymonkey.com/r/2JV7MFB

Feedback from this survey will enable PDA to present future webinars of interest and importance to our Members and Australia’s disability community.

If you would like to become a part of the PDA community and be kept up to date with future events, news and opportunities please sign up for FREE PDA MEMBERSHIP by going to:

www.pda.org.au/membership/

Ready, Willing and EmployABLE.

Our next FREE “EmployABLE” Webinar will be run on Wednesday June 1st and we’d love to have you join us.

In this informative webinar, our Panelists will speak about support and opportunities available to assist PWD in stepping on to and advancing up the employment ladder.

Whether you’re looking to enter mainstream employment, thinking of starting up your own business or just wanting to have a better understanding of employer obligations in employee recruitment and reasonable workplace adjustment – this Webinar is a must.

To register for this webinar, go to:

https://us02web.zoom.us/webinar/register/WN_lwVemhJcQQSUM030J3vmgg

After registering, you will receive a confirmation email containing information about joining the webinar.

If you have any questions around employment that you would like the Panel to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.

We look forward to your joining us for this interesting and useful presentation.

If you’re not able to join us on the night, post-Webinar this presentation will be published to the PDA YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q).

Whilst you’re visiting our channel, please subscribe so that you’re kept informed of other presentations.

Once you have watched this (or any other of our webinars), we encourage you to take part in out short survey by going to:

https://www.surveymonkey.com/r/2JV7MFB

Feedback from this survey will enable PDA to present future webinars of interest and importance to our Members and Australia’s disability community.

How easy was your voting experience at your chosen AEC Polling Place?

Did you vote at an AEC Polling place either as an early voter or on Election Day?

If so, we would really appreciate your help to ensure that Australia’s democratic process is truly accessible to all Australians living with disability.

We’d love to hear just how accessible your chosen location was and whether reasonable adjustments were in place to support your needs in placing your vote.

This will provide us with a better understanding of issues that are and aren’t being adequately addressed to make future voting in person possible, stress free and a choice for those who require additional consideration and support.

We will then provide AEC with our findings to work towards improved polling place accessibility moving forwards so that Australia embraces the importance of everyone’s vote.

To take part in this important process, please provide your feedback in our short survey by going to:

https://www.surveymonkey.com/r/TSHXNH8

Many thanks for your help.

Australia’s disabled not included in the Australian Bureau of Statistics’ recent unemployment numbers.

A recent Disability Support Guide article (https://www.disabilitysupportguide.com.au/talking-disability/unemployment-rates-released-but-not-for-people-with-disability) has highlighted the Australian Bureau of Statistics’ exclusion of unemployment rates of people with disability in their April Labour Force Participation figures (https://www.abs.gov.au/statistics/labour/employment-and-unemployment/labour-force-australia/apr-2022).

In spite of disability employment being a topic of discussion and (supposed) action, this statistical ostracism does little to make people with disability feel as though they are included in the conversation.

With unemployment and underemployment rates of people with disability much higher than national figures, national statistical collection on this topic has not been actioned by the ABS since 2018 with the release of their Survey of Disability, Ageing and Carers (https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release).

These findings revealed

an unemployment rate of people with disability of 10.3% and more than double the period’s comparative rate for people without disability which stood at 4.6%, and

that just 28.3% of people with disability of working age were in full-time employment – compared to 54.8% of people without disability in the same age group.

If statistical collection and analysis excludes 20% of Australia’s population (in that of our disabled citizens), how is it truly a measure of our country’s employment numbers and how does it not perpetuate feelings of exclusion and discrimination for our country’s largest minority group.

If the Australian Government is committed to ensuring “inclusive workplace cultures where people with disability thrive in their careers” (https://www.dss.gov.au/disability-and-carers/disability-employment-strategy) through initiatives such as the Disability Employment Advisory Committee (DEAC) and Employment My Ability, surely there needs to be greater attention on the bigger and comprehensive picture so that all stakeholders can be better equipped and truly committed to bringing actual positive change!?

Election Accessibility

In PDA’s push to ensure that Australia’s democratic process is accessible to all Australians living with disability, we would appreciate your feedback on your experience on voting at an AEC polling place as an early voter or on Election Day.

This will provide us with a better understanding of issues that are and aren’t being adequately addressed to make voting in person possible, stress free and a choice for those who require additional consideration and support.

We will then provide AEC with our findings to work towards improved polling place accessibility moving forwards so that Australia embraces the importance of everyone’s vote.

To take part in this important process, please provide your feedback in our short survey ONCE YOU HAVE VOTED AT A PHYSICAL POLLING PLACE LOCATION.

To access this survey please go to:

https://www.surveymonkey.com/r/TSHXNH8

Many thanks for your help.

How the NDIS is changing my quality of life.

Written by Robert Wise – PDA VIC Associate Director

Firstly, I’d like to point out that there is certainly room for improvement to the NDIS. Everybody’s circumstances are different, always evolving and so plans cannot be simply formulaic. As a result there’s a lot of negative talk around the NDIS. However, I believe that we need to defend the NDIS. My blog post talks about the way in which I personally benefit from the NDIS.

In 2003 I became an amputee with one of my legs removed with an amputation known as a Hip disarticulation. As a result my life changed. I lost my job and I was unable to carry out household tasks such as vacuuming, mopping, cleaning, changing, washing bedding etc – the tasks that pre-amputation were carried out easily and without thinking.  

As I am single and live alone, with family scattered all over the country, the only help I could access was a 1.5 hour visit from my local council home help crew to help with these tasks. There was no help for social activities, shopping and other tasks that I needed.  Without the help of my parents for other tasks and getting me to some of my medical appointments life was difficult. I purchased a mobility scooter with my own money to help me get around in the community, to visit my local Men’s Shed and go shopping etc. 

In 2018, with the help of my GP, I received my first NDIS plan. It was a very basic plan with 12 months funding for domestic help in the home once a week, once a fortnight visits to do lawn mowing and some gardening and 1.5 hours a week for a support worker for social activities. Some funding was also provided for occupational therapy and physio. Also included was funding for a new Manual Wheelchair and a ramp into my backyard, which enabled me to go outside in my wheelchair independently to enjoy a coffee etc in my backyard (which can be hard to carry using crutches). 

The initial 12 month plan also allowed me to purchase a new lightweight, foldable manual wheelchair complete with tiedown points. This was a great help as my previous wheelchair did not have these, creating problems with one country Victoria coach refusing to carry me without these fitted on my wheelchair. On such occasions, I had to struggle out of my chair, up the bus steps and into a seat. 

My next plan included a very good report from my OT, which included funding for my ramp into my backyard. This incredible home modification was completed in between one of the many COVID Melbourne lockdowns. Additional funding was also granted for a support worker to help me with some of my social activities, shopping etc – also providing me with welcome company between my planned Men’s shed outings and other activities. 

I also received funding for increased occupational therapist hours that included preparation for a quote for a power assist device for my wheelchair. This was approved after a plan review and now I am a proud owner of a smooth one-power assist attachment for my manual wheelchair. This makes it much easier for me to use the chair when navigating steep hills or when fatigue sets in. 

The NDIS has also opened up my options socially and I now have help to play in a Tenpin Bowling league once a week.  I am also now able to enjoy trips to the park and beach (boardwalks only) with the help of a support worker, my new manual wheelchair and power assist. 

I also have some funding for One-on-one gym sessions to help maintain my fitness levels, with an occasional day in a group activity where I can enjoy fun activities like fishing and visiting zoos and other places of interest. Please watch out for up-and-coming videos of my Assisted Technology and home modifications. 

I would like to close by saying, that without the NDIS I would not be living the full and happy life that I am today.

The Australian Electoral Commission (AEC) has just released a list of polling places with an accessibility rating to assist people with disabilities or mobility restrictions. 

Ratings are:

  • wheelchair accessible
  • assisted wheelchair access, or
  • not wheelchair accessible.

Clicking on the rating listed against each polling place will give you more information about specific accessibility features.

To find the most suitable place for you, either before or on Election Day, go to:

https://www.aec.gov.au/election/voting.htm#start

For more information around the aec’s commitment to ensure that Australians with disability or mobility restrictions are able to enrol and make their vote count, go to:

https://www.aec.gov.au/assistance/

How to Get Young People on Board – not Bored

Written by Tim Harte – PDA VIC Director to Get Young People on Board – not Bored

As a Disabled Peoples Organisation (DPO), Physical Disability Australia (PDA) lives the ethos of ‘nothing about us, without us’ – people with disabilities informing advocacy and leading the change to enable every Australian living with a physical disability to realise their full potential. 

Within PDA, I see the value of lived-experience with every decision we make and the real-world outcomes achieved through our advocacy. With charities, government bodies and corporations(entities) that deliver services for and interact with, marginalised and underrepresented communities, it is both an ethical obligation and a practical necessity for the work of these entities to be informed and shaped by members of these communities, and for meaningful participation of community members to occur within decision-making structures. 

Commonly, meaningful participation within decision-making structures of entities involves reference groups, comprised of members of a marginalised community, specifically focused on aspects of the entity’s interactions with a specific target group. Reference groups are great for informing operational aspects (of entities) e.g. advising on service delivery. However, input from reference groups is not sufficient. It is critical for effective, appropriate and inclusive decision-making that people with disabilities are within high-level, decision-making structures (Boards & Board committees) & staff members, with relevant, lived-experience, are employed by the entity to ensure recommendations and input from reference groups are implemented and given value in the entity’s strategic priorities. 

As a young, disabled person who serves on 3 Boards, I am part of the change involving people from marginalised and underrepresented communities, with lived-experience, being part of and making a difference through active participation in high-level, decision-making structures within entities. Being part of the change is not an easy experience. It takes grit, a thick-skin, patience, determination and dedication. More focus is given to getting people with lived-experience on Boards, but the next, and equally important, step is change and action within entities to ensure people from marginalised and underrepresented communities can meaningfully participate and contribute within the Board environment. It is the challenge to ensure the voices of young and marginalised people are heard and considered within Boards, and we are not left feeling frustrated, undervalued and bored by inaction.

My experience, as a young person on Boards & Board Committees in a diverse range of sectors, has gotten me thinking about what it takes to get young people meaningfully involved in governance. Not just tokenistically to meet some predefined quota or societal expectation, but in a meaningful, valuable and respectful way. My recommendations for entities (charities, government bodies & the private sector) to implement to ensure young people on their Boards are supported to meaningfully participate and contribute, and some recommendations to young people to ponder when considering applying for Board positions, are itemised below. 

Support

Properly supported, appropriately experienced young people can learn greatly from Board service and considerably contribute to informed decision-making within the Board environment. 

For entities:

a) Buddying: Many Boards ‘buddy up’ new (young) Board members with existing Board members to educate them about Board processes & conduct, and most importantly to support them to feel more secure within the Board environment and enhance their ability to contribute. Things to consider include:

i) Buddying is often a short-term, ‘on-Boarding’ mechanism to provide initial support for new Board members rather than a continued, support mechanism. It is important for young Board members to have a buddy acting as a support for the duration of their time on a Board. 

ii) Allocation of buddy partners should never be done without discussion with the young Board member and ideally their buddy should be their choice. Ideally, following their first Board meeting, young Board members can be asked who they would like to buddy with. Prior to allocation the Board Chairs/Presidents should act as a support. 

iii) Buddy allocation should not be regarded as permanent. Young Board members get to know different Board members better throughout their time on a Board and may benefit from support of different Board members for different matters. Also, Board members may change, hence, buddy allocation needs to be flexible. 

iv) Some Boards refer to buddying as mentoring, which can suggest a paternalistic relationship which may unintentionally intensify the power dynamic imbalance between existing and new young Board members, reducing open conversation and reducing the benefits of buddying. 

b) Employee Assistance Programs (EAPs) are confidential external counselling programs offered to employees by employers. Not all entities have EAPs. However, many (particularly those involved in service delivery or areas involving direct interaction with the public) do have EAPs. Board members need to be able to access EAPs, yet many Board members of charities serve voluntarily and cannot access EAPs as they are not regarded as staff. Board members, during their first term, will more than likely discuss psychologically distressing matters or be in psychologically distressing situations while serving on a Board. It is important, both for the health and wellbeing of Board members and Board culture, that Board members are supported through an EAP to confidentially deal with the impact of such experiences with qualified healthcare professionals. For young Board members, who often have small and less established support networks, EAP access is a necessity.  

c) Training: Training is a major part of supporting young Board members. Training has been covered further under the capacity building recommendations. 

For young people: 

a) Personal support: To ensure young people’s wellbeing, they should not serve on Boards unless they have a stable close support network. Young people need at least 2 people they have known for 2+ years, who have supported them in the past, to support them during their Board service. The reality of being on Boards, as a young person, is that it is not a smooth process. There will be ups and downs, and sometimes nights (after meetings) when you cannot sleep. For your own well-being you need people who know you and can reliably support you. I am lucky to have 2-4 people (2 family and 2 friends), with similar political views & shared values, who support me. 

Capacity building (training)

Training serves to build the capacity of young Board members to contribute and build the capacity of all Board members to implement best practice governance and create a safe, efficient, and effective Board environment. I prefer the term ‘capacity building’ over ‘training’ as it acknowledges the exisiting capacity within each Board member. Everyone has skills, experiences and expertise from their life, work & other voluntary roles. Capacity building needs to recognise this and build on existing capacity and strengths.

For entities:

a) Assessing existing skills: Quantification of Board member’s current skills and knowledge areas is the first step to building the capacity of the Board and Board members through tailored & relevant capacity building. Commonly, skills matrixes, sometimes extended to include key knowledge areas of an entity’s work, are used to quantify (measure) different skills areas and identify weaknesses or areas where capacity can be enhanced within the Board team. 

i) Quantification: To be effective, a skills matrix must be designed to prevent ambiguity in skill (or knowledge) quantification. Clear and detailed guidance must be provided around the meaning of a low, medium or high rating in a skill/knowledge area. Skills matrix quantification needs to take a similar approach to key selection criteria rankings in job applicant short listing. Skill matrix scoring scales need to be at a minimum 1 (no knowledge) to 10 (this is my profession); 1-3 rankings are meaningless. Scores need to be clearly connected with levels of understanding and proficiency -e.g. 5 (I watched a webinar on this topic), 6 (I went to a conference or did a short course on this topic), 7 (I have done an elective at University on this topic), 8-10 (I am professionally qualified in this area and have worked or work in this area). 

ii) Use of skills matrixes: The skills matrix should be used by Board members/Chairs/Training Committees to identify and plan tailored, relevant training for individual Board members, as well as, identifying weaknesses in professional experience within the Board that may be remediated through co-opted Board members.

b)  Sourcing training: Quality, professional capacity building is essential. 

i) Inhouse training: Inhouse training is training performed by staff or Board members and has limited application and benefits. An over-reliance on inhouse training can create an unhealthy power dynamic between Board & staff members – particularly young Board members. This can also, unintentionally, recycle current, inappropriate, Board culture and practice and perpetuate unhealthy power dynamics; in turn preventing positive improvement and real, continuing professional development for every Board member. Wherever possible, external agencies should be sourced for well-planned capacity building.

ii) Sourcing appropriate capacity building: Separating the ‘waste of money’ webinars, conferences and courses from ‘value for time & money’ capacity building options can be time-consuming and difficult. I have found personal recommendations are best. I have done 4 different governance webinars/short courses – 2 free & 2 paid and would only recommend two of them for their content, relevance, cost and value. It is not difficult to find free training for charity & community organisation Board members, but it is difficult to secure a free booking with short notice. Subscribing to alerts from the Australian Scholarships Foundation, which provides regular updates on free offerings from leading training providers, is an excellent way to find relevant opportunities for Board members. 

c) Relevant Capacity Building: After assessing existing skills, relevant tailored training for individual board members should be identified. Last year on a Board skills matrix, I scored lowest in the knowledge area of ‘Housing security’ and in the skill area of ‘Finance & accounting’. In response to these scores I went to an online conference on the topic of homelessness & housing security, and completed an elective subject at university on accounting, building my capacity in both these areas. 

Identification of relevant training opportunities should be a formalised, transparent process within Boards and should combine information gathered from assessing existing skills with preferences of individual Board members to create a mutually agreed capacity building plan and schedule. It is important that training should not be onerous and can fit in with existing commitments and career plans of young Board members. The elective I undertook last year, counted as a credit point in my course (i.e. I was going to do the work anyway as it was relevant, and contributed to my career plans).

d) Tracking & Feedback: Tracking training completed by Board members is important to ensure accountability of mutually-agreed commitments, evaluate capacity building of training (i.e. how does training result in enhanced skill matrix) and, most importantly, to get feedback on completed training so training providers/courses can be recommended (or not) for Board members in the future. Due to the constant requirement for upskilling & refresher training and for building and maintaining the capacity of the Board, it is best if training is tracked in specific time brackets (e.g. Jan-June 2021) for each Board member.

For young people: 

a) Find your own capacity building: Some Boards will view training as an annual webinar for the whole Board. For young Board members, who commonly have different skill & knowledge gaps to the rest of the Board, this approach is not ideal. Don’t be scared to search and apply for your own training opportunities. A lot of conferences offer free scholarships and free high-quality training opportunities are also available. Apply early for these opportunities as spots fill up fast. 

General recommendations for young people: 

a) Know the commitment you are making: Serving on a Board takes time. Make sure you read through the position description of the Board role, note down the meeting frequency, committee obligations and other time commitments if stated. For me, the time it takes to thoroughly read Board papers has been the largest time commitment. Some Boards will have a regular amount of work, 20 pages of reading/meeting, others are more variable (20-60+ pages of reading/meeting).  Generally, for Board members serving in their first year, the time commitment of being on a Board is 20% greater than the amount stated in a position description.  

In conclusion, don’t be afraid to put your hat in the ring, but be realistic about your current capacity and experience, be prepared to undertake additional training to build your capacity and be prepared for a lot bigger time commitment than is suggested.  As a DPO, PDA is a great example of valuing the voices and input of people with diverse lived-experience. PDA actively incorporates intersectional lived-experience in decision-making and ensures young people are listened to and valued.

My experience with COVID-19 

Written by Paul Williamson – PDA ACT Associate Director

After eighteen months of avoiding COVID-19: joining the work from home revolution, avoiding contact with others, limiting outings, strict hand-washing and mask-wearing routines, my luck ran out in January, and I tested positive. I decided to travel interstate to visit family who I had not seen since the beginning of the Covid outbreak and, despite being extremely careful, it was not careful enough.

My symptoms were mild, much like a nasty winter cold, and I only learnt it was COVID when trying out one of the incredibly elusive rapid antigen tests (RAT) that I managed to get while my local pharmacy was re-stocking.  I take several medications, including one that supresses my immune system and increases the risk of infections – including COVID-19.

My recovery took much longer than the 3-5 days advised by my doctor but, eventually, I tested negative after around 4 weeks. 

Wait, what the…

I never fully got back to my baseline of good health, which had consequences when I again tested positive for COVID-19 at the beginning of March. I was triple vaccinated by this point, had already had COVID once and falling ill again was one of the last things I expected. I figured that vaccination plus having the antibodies of a recent infection would protect me for at least a few months.

Symptoms this time were severe, including breathlessness, debilitating fatigue, extreme difficulty concentrating, a total loss of my sense of taste and smell, and less frequently reported symptoms, including painful teeth and gums and insomnia.

While testing negative a few days ago, I’m still unwell and suffering quite bad fatigue and a general feeling of malaise. 

It does happen

While anecdotal evidence suggests an increase in the number of people re-infected, there is no publicly available data in Australia at a national level to confirm this (as of March 2022). Research from the UK cited by Professor Mike Toole from the Burnett Institute supports anecdotal evidence. That research found that whilst in November 2021, only one per cent of new cases were reinfections; with the emergence of the Omicron variant, this figure had climbed to 14 percent by March 2022.

My concern (apart from a COVID-19 hat trick) is that some of the symptoms will persist, so called long COVID – a condition now recognised by the World Health Organisation (WHO). I’ve burned a lot of my reserves this year, and keeping up at work while parenting a teenage child and managing my health and other commitments – all while suffering ongoing fatigue and ‘brain fog’, is daunting.

I saw a great meme the other day about vaccination, something like: ‘you can put your faith in modern medical science, or risk dying like a medieval peasant’, which sums it up quite nicely, in my opinion. Going through COVID-19 unvaccinated, based on my experience, is not something I would like to have done. 

We’re all in this together.’

During the Coronavirus pandemic, I have found the support available for people with disability variable. Despite the (often ad nauseam) pronouncements that “we’re all in this together”, that isn’t always how it felt.

Despite being supposedly at the head of the queue for vaccination, this isn’t how it played out for many people with disabilities who had to wait much longer. They were crowded out by others at vaccination centres or could not receive the vaccination due to living arrangements or mobility. Then we had difficulty getting (and the cost) of RATs, the requirement to queue for hours for PCR tests, the scarcity of support workers, the anxiety about introducing COVID-19 into the home, not to mention the added complexity of simple things like getting groceries and medication. 

While I managed to get by, having resources including calling on family and friends, I know others who had a much tougher time. Those on fixed incomes, not as adept at dealing with the bureaucracy, without family and friends to call on, were often left feeling like a cast member in the Hunger Games.

People with disability so often feel the brunt of failures in planning, policy development and program delivery during national disasters or other upheavals. The Disability Royal Commission (DRC) expressed concern about the issue as far back as March 2020, reinforcing its concerns in February 2022 with the outbreak of the Omicron variant. The impact of COVID on people with disability will undoubtedly provide fertile content for the final report of the DRC, due in September 2023.

People with disability are resilient and resourceful; they have learnt (often the hard way) they have to be. It would be nice, especially amid a global pandemic, if their very survival didn’t depend on it.

My experience with covid -19 as a person with a disability

Written by Tammy Milne – PDA TAS Associate Director

My name is Tammy Milne. I had covid and I survived. For over 2 years now I have avoided the insidious virus like the plague! I’ve taken all the precautions. Triple vaccinated, wear a mask, hand sanitise, limit my contact with the outside world and limit who comes into my home. I have made my support workers all take Rapid Antigen Tests before commencing a shift and I have let go two workers who would not get vaccinated. The longest I spent in self isolation was 49 days. Our state government took protections very seriously and shut our borders early and for an extended period. But then the border opened on the 15th December and a tidal wave of covid washed over our little island state.

For almost two years our little state was covid -19 free and then the flood gates opened. Cases swept through towns, schools, business and homes. After being locked up at home and missing my daughter so much, she is away at University in Hobart, I booked a support worker, we packed the car and the dogs and headed to an AirBnb in Hobart. For the first five days we did outside activities to lessen the risk. We took walks, ate ice-cream on the waterfront and enjoyed the beautiful historic Battery Point, marvelling at the old buildings.

But all our safety protocols were only as good as the weakest link and unfortunately my daughter was mine. After 6 days in Hobart she tested positive to covid-19 which meant I was a close contact. By this stage I had sent my support worker home with the dogs and was relying totally on my daughter and casual support worker for support in Hobart. I had also moved to an inner city hotel to be closer to my daughter.

On the Wednesday we went out for dinner, she then took me back to the hotel and got me settled for the night and left. At 11.30pm she FaceTimed me and said that she was positive. What does this mean for us? I, at this stage was a close contact and so had to go into quarantine and rely on my casual support worker whilst my daughter was out with covid. Things started falling apart rapidly from this time on. My support worker said they did not feel comfortable supporting me as I was a close contact and they felt at risk. I assured them that with PPE, public health said that they were safer working with me than going out to the shops. I rang their union to get advice on where they stood. The Health and Public Sector Union stated that they follow and support health protocols and encourage their members to follow all mandates in their workplaces. Still they (my support worker) declined to work with me.

I was stuck! I was stuck in a hotel and couldn’t get room service into my room as I was in quarantine. They could leave food outside my room but, because of my disability, I could not physically lift the food from the floor outside. I was also unable to shower. I was stuck and stinky and hungry.

One of the management team in the hotel broke hotel protocol and brought me up some tea and toast. Her rational was, ”I have had covid only two weeks ago so I’m immune and just couldn’t leave you up here like this. It is just not moral.”

So this dire situation began to turn around when I rang my state based dedicated disability covid helpline. This happened around 1pm. I told them of the situation and thankfully the seriousness of this predicament was understood and they acted with understanding and empathy.

I received multiple phone calls throughout the day as they worked out a plan for me. Many solutions were mooted; go to hospital for the night, go to a covid care facility or go home. I wanted to go home. And so at 7.30pm a nurse from the covid hotel was dispatched in full PPE to shower me, pack my bags and hunt down some food for me as I hadn’t eaten since the tea and toast earlier in the afternoon. At 9.30pm a patient transport taxi with two lovely young volunteer ambulance folks with the St Johns Ambulance arrived, again in full PPE, to collect me and start my long journey home. I arrived home at 2am Friday morning. My support worker Michelle was in the house already to take over my care. It was deemed she was not a close contact but, as a casual contact, was given permission by the health dept to provide care for me for the next 7 days of isolation. I fell into bed and slept.
I woke the next morning feeling a bit rough and did a Rapid Antigen Test. I went from being a close contact to a positive case just like that!

After registering my positive Rapid Antigen Test, I was called by the state health department Covid@home nurse and triaged. Now going back a few months I had been working with a respiratory physiotherapist and she was concerned that if I caught covid the situation could be dire – as, like many wheelchair users, I have lower functional diaphragm muscle which is necessary to produce a productive cough and remove the risk of pneumonia. So armed with this information i was called by the Covid@home doctor who hit my covid infection hard with precautionary antibiotics, prednisolone, a preventer puffer and ventolin. I won’t lie. The first three days I felt rough -with a sore thoat, a snotty nose but no fever or temperature. I was lucky, have recovered well and am now back swimming and basically enjoying my new freedom of immunity for the next few months.

It turned out pretty well really, but there are some issues that need to be recognised. The number one being support workers and their duty of care to clients. And number two being the issue around emergency support workers in times of need.

The duty of care of support workers is to be professional, know and understand public health orders and to use and be responsible for PPE and their own safety. It is one thing to be a good support worker when times are good but, when times turn pear shaped, abandoning a client is not on! Secondly emergency support workers need to be readily available. I self manage and was so fortunate to have a support worker practically sacrifice herself to stay at my home and look after me for seven days. She was paid accordingly and it must be pointed out did not catch covid from me in the seven days. She still hasn’t had covid. She went above and beyond and her professionalism and understanding of duty of care are exemplary. However, if she had been unavailable, what measures could I have employed? Where could I find skilled workers who would take on 7 days of isolation? This is a direct question to government health departments and the NDIS. In times of need we need help and the NDIS needs to step up with solutions.

Regarding support workers in the field now, how do we instill in our workforce these moral and professional obligations to their clients? Better training, a minimum standard of education and some direct specific workforce training for support workers around their obligations and duty of care. I would suggest nothing lower than an associate diploma. Workers can work toward this on the job, but have a time frame around completion. Secondly we should pay them better. Insecure and casual work does not produce the needed professional standing that this work must aspire to. To coin the old adage, “you get what you pay for”.

In conclusion, my covid experience has exposed the best and worst in our system. The worst being the gaps in the system that do not cater for emergency support workers and the lack of training and guidance some support workers have around duty of care. However, the best far out way the worst. The care provided to me by the Covid@home team and the Disability helpline was fantastic. I was considered as an individual case and a person with real fear and distress and not just another case. I was heard and I felt very well cared for. I am thankful for the lovely patient transport girls who took on overtime to get me home and lastly my support worker Michelle. My situation is not an anomaly but a point in time and space that maybe be replicated at anytime anywhere in Australia. Fortunately for me I was in Tasmania and happened to be in the best place at the right time.

Shaping myself as a ‘good’ mother.

Written by Krystal Matthews – PDA SA Associate Director

Some women have a burning desire to have children. Other women decide not to have children. There is also a large group of women who never knew how much they wanted children until they discovered fertility issues.

I belong to a group not talked about in society often, if at all. I am a disabled women who grew up with a burning maternal instinct to be a mother. I am also a woman who is considered less capable of being a mother by society even before those 2 pink lines show up on a pregnancy test – simply because of my disability.

Most couples speak to their GP about starting a family. I knew this was a conversation best avoided for me; medical professionals have never filled me with optimism. My Child Studies teacher told me that she didn’t want me to participate in the assessment of having a computerised baby. According to her, it would be too difficult for me and she didn’t want me to drop and break this expensive baby doll. It was then, at 15 years old, that I was already classed as a ‘bad mother’ – before I was even given an opportunity to become one. It didn’t make sense to me. Was it because of my Cerebral Palsy? Or because of my physical limitations and wheelchair? Despite my lifelong dedication to fitting into this mainstream world, I was still being rejected by it and my one pivotal dream seemed like it was frowned upon by society.


This didn’t stop me from viewing myself as a mum in the future. It just made me understand that being a mum in a wheelchair would be harder; mostly because of how non-disabled people view disabled people and because I would need to convince the world that I could be a good mum whilst at the same time trying to convince myself.


I met my partner in 2012 and the paradigm shifted. He had a beautiful 4 year old daughter who taught me that children only want your love, attention and fun. None of these three needs were impacted by my wheelchair and, as I fell in love with my partner, my love for her blossomed equally. She didn’t see my disability like adults do and she adored that I liked to play like a child. So much of my childhood was consumed with physiotherapy activities disguised as play and this has made me actively seek out childlike fun as an adult. The step-parent role was my crash course into parenting and it filled me with confidence and a stronger desire to have my own child, alongside my step-daughter.


Pregnancy was my biggest mainstream role to date; I felt like a ‘real’ woman for the first time. I went to the hospital for mainstream appointments, and I could happily complain about all the mainstream side effects that pregnant women talk about such as nausea and tiredness. I’m not going to lie, being pregnant and in a wheelchair was rough to say the least. People thought I was in a wheelchair because I was pregnant, not a woman in a wheelchair who was pregnant. I was also asked a lot about how our baby was conceived, as if the idea of a woman with a disability having sex was considered outside the realm of possibility. I can’t imagine an able-bodied woman getting asked this question when she tells people she is pregnant.

I gave birth to my baby girl, Zara on the 14th of May 2019 by c-section. It was the first operation I had, and from it I received the most beautiful gift. Giving birth to child who is able-bodied was like giving birth to a child who has superpowers.

When Zara was 9 months old, she looked up at me with her arms open and her big blue eyes begging me to pick her up, which I couldn’t do standing up. Nothing prepared me for that moment. The guilt a mother can feel is astronomical, especially when your baby’s needs are your number one focus.


Every new mother has guilt and anxieties, and I worked through them like I did with every challenge in my life until then. Zara and I are the perfect partnership. She knows I need to sit down before I pick her up. She knows I need my wheelchair before we leave the house. She knows that she can put on her shoes faster than I can put on my shoes. Zara gets excited when she sees another person in a wheelchair as it assimilates her mainstream world. My 13-year-old bonus daughter sees the world a little differently now. I hope she sees the uniqueness in difference and that fitting in all the time is overrated.


My definition of being a good mum is not wrapped up in trying to fit into the mainstream world. Now, as an adult and a mother, I look back at myself as a child and I need to honour the little girl in the pink wheelchair; I kept moving, I kept trying and I didn’t listen to the adults who underestimated me. That little girl will teach my girls something special; that little girl made sure that the only person who was going to shape her world was me.


Tips for women with a physical disability thinking about having children.
• Listen to your own voice, consider what you need, what your individual situation is and seek out a medical team that is supportive.
• Focus on building up your strength and fitness to support your pregnancy
• Work with an Occupational Therapist and a Physio Therapist before, during and after pregnancy to support you.
• Be your own best friend. Shape your own world and know that you are made for your child and your child is made for you.
• Read other stories of disabled parents. We are out there. Read “We’ve Got This” by Eliza Hull.

You can now watch PDA’s fun, myth-busting ”You CAN Ask That” Webinar on PDA’s YouTube channel.

Did you miss our recent fun and informative myth-busting “You CAN Ask That”?

Thankfully you can now take a look at it on our YouTube channel and hear the answers to those disability questions that you’d love to have answered – but maybe have been too uncomfortable to ask.

Hosted by talented MC Talia Spooner-Stewart, this event featured knowledgable panelists Dr Dinesh Palipana OAM, Krystal Matthews, Nick Schumi and Andrew Fairbairn. Answering the short and curly questions and sharing personal opinions and experiences around questions supplied by PDA Members, the general public and webinar attendees, this group keeps viewers entertained and eagerly waiting for the next question to be asked.

You can view it by going to:

https://youtu.be/ecnjDbjLDHQ

Whilst you’re there make sure that you subscribe to our YouTube channel.

We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.

To access the survey, please go to:

https://www.surveymonkey.com/r/2JV7MFB

PDA’s 2022 Webinar Series’ “NDIS Quality and Safeguards Commission” is now available to view online

Did you miss our recent webinar presented by the NDIS Quality and Safeguards Commission or do you just want to watch it again?

Well you’re in luck because it’s now available to view on the PDA YouTube channel.

Presented by Director of Engagement, Fran Vicary, this webinar talks about the role of the Commission, its mission to improve the quality and safety of NDIS supports and services and the rights of an NDIS participant. Thank you to Fran Vicary and the the NDIS Quality and Safeguards Commission for presenting this important and informative event.

Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested to learn about the Commission, this webinar will give you a comprehensive insight into the NDIS Quality and Safeguards Commission.

You can view it by going to:

https://youtu.be/G6dtgVFAclg

Whilst you’re there make sure that you subscribe to our YouTube channel.

We hope that you find this webinar informative and encourage you to fill in our short survey. It will only take you a few minutes and will greatly assist us to bring you more webinars in the future.

To access the survey, please go to:

https://www.surveymonkey.com/r/2JV7MFB

“I’ve had a few discussions of late about the word disability…and I don’t know if disability’s the word that we can use.” 

~ Dinesh Palipana

PDA’s Ambassador, Dinesh Palipana OAM, helped to narrate this piece that recently awarded a Special Prize on Health Innovation in the World Health Organization (WHO)’s “The Health For All” Film Festival.

The Griffith University’s Inclusive Futures team submitted a documentary about the incredible work being done to improve accessibility and inclusion through technological advances and retraining society’s views.

A great watch. Congratulations to all those involved.

“NDIS Quality & Safeguards Commission: what does it do for you?” webinar -presented by Fran Vicary (Director Engagement)

You are invited to PDA’s next informative webinar, “NDIS Quality & Safeguards Commission: what does it do for you?” on Wednesday March 23rd 2022:

6pm NSW/VIC/TAS/ACT
5:30pm SA
5pm QLD
4:30pm NT
3pm WA


Captioning and Auslan will be available for those who require it. Please email promotion@pda.org.au if you would like to access these services.

In her role as Director Engagement, Fran Vicary will talk about the role of the NDIS Quality and Safeguards Commission, its mission to improve the quality and safety of NDIS supports and services and your rights as an NDIS participant.

Whether you’re currently accessing the NDIS, a service provider, working in the disability sector or just interested in learning about the Commission, make sure that you join us for this very worthwhile webinar.

If you have a question that you’d like Fran to answer, please email promotion@pda.org.au or ask a question via the online chat during the webinar.

To register go to:

https://us02web.zoom.us/webinar/register/WN_ZFpu_SJLSrqFyHIu4Mfw7A

Please feel free to share this invitation with others in your network. You do not need to be a PDA Member to attend. However, if you’re interested in signing up for our FREE membership, you can join our community by going to:

www.pda.org.au/membership/

Thank you to Fran Vicary and the NDIS Quality and Safeguards Commission for presenting this important and informative event.

Celebrating Kathryn Lyons on International Women’s Day

One of our past Associate Directors and current member, Kathryn Lyons, featured in an Our Logan article celebrating International Women’s Day earlier this week.

We are very proud of all that Kathryn has done and continues to do in her quest to improve accessibility and “change lives, to inspire, and encourage others to believe in themselves.”

💕

https://ourlogan.com.au/community/kathryns-mission-for-inclusivity/

PDA Ambassador, Dr Dinesh Palipana OAM, is a founder of the LifeRAT project – providing FREE Rapid Antigen Tests to Australia’s disabled community

LifeRAT (http://liferat.com.au) is a community group recently brought together to provide FREE Rapid Antigen Tests to Australia’s disabled community, and to overcome cost and supply issues and the difficulties and concerns experienced by PWD in trying to access RATs.

PDA’s Ambassador, Dinesh Palipana OAM, in conjunction with Scott, Tim and Tyler from Able Digital Wellness (http://abledigitalwellness.com.au) and Rob from Lovehoney (https://www.lovehoney.com.au), put together this project to ensure that people with disability are provided with free RAT testing so that they “can get back to living”.

Supported by partners that include Australia Post and Mainfreight, people with disability can register to take part in this incredible project by going to:

http://liferat.com.au

As part of his logistic involvement in the project, Lovehoney’s Rob is also interested in employing people with disability to be involved in the distribution of the RATs.

If you are a person with disability looking for employment and you’d like to be involved, please email Rob directly via rob.godwin@lovehoney.co.uk.

Rob has been doing a lot of work on inclusion with Lovehoney, including his involvement with ambassadors Dylan Alcott and Chantelle Otten Sex Therapist.

For more information go to:

www.abledgitalawareness.com.au/about-us/

Do you have a disability and have you had difficulties accessing a polling booth in your electorate or had issues in voting via telephone or by mail?

Whether you’ve experienced issues voting remotely or in physically accessing polling stations (such as available disability parking, building access), availability of accessible polling booths for wheelchair users and those requiring other assistance (eg. Braille, Easy English, sensory requirements), PDA wants to hear from you.

With your help we hope to improve accessibility in Australian elections, so that people with disabilities are given the opportunity to participate in the same way as everyone else.

In a democratic society, voting is something that is generally taken for granted. However, for an increasing number of people with physical disabilities, local accessibility to vote is not guaranteed.

Following the announcement of an election, a list of polling places are made available by the Australian Electoral Commission (AEC). Within this list, each polling place is given a rating around accessibility to assist people with disabilities or mobility restrictions (i.e. wheelchair accessible, assisted wheelchair access, or not wheelchair accessible).

However, previously available statistics taken from this list showed that of the expected polling places outlined on the AEC website, as few as 3% of polling places will be fully accessible at the next Federal election.

These grossly inadequate numbers contravene the Commonwealth Electoral Act 1918 which states that electors are entitled to vote on election day at any polling place in their electorate.

So why should this inexcusably inadequate availability of accessible polling booths be tolerated?

Why should people with mobility disabilities be given no option but to travel (often long distances) outside of their local areas to vote or be compelled to vote outside polling stations or lodge their votes via post or telephone?

All Australians should be given the opportunity to engage in our democratic processes equally and with fair consideration.

We really want to hear about your personal experiences in voting at Australian elections (whether local, state or Federal) so that we can have a better understanding as to whether or not enough is being done to make our elections accessible.

We’ve put together a QUICK but IMPORTANT survey around this issue and encourage you all to participate, so that we can ensure that all members of the community have equal access to the political process.

Please go to the link below and take part in the survey BY 5PM AEDT MONDAY 14th MARCH 2022 and let’s make sure that everyone’s votes are counted at our upcoming elections.

https://www.surveymonkey.com/r/JVYDNNG

PDA’s SA Associate Director Krystal Matthews shares her story on her successful career, motherhood and her life-changing NDIS plan.

Today, on International Women’s Day, PDA’s SA Associate Director Krystal Matthews’ NDIS story has just been shared.

“There are a lot of different issues that affect women with disabilities and there are a lot of particular issues that affect parents who have disabilities.

It’s not easy, it’s not easy for anyone to be a mother, but the fact of me having a disability does not make me a bad mother.”

Check it out:

Happy International Women’s Day

Today is International Women’s Day – a day for women (and men) worldwide to combine voices and share the message of equal rights for women.

Everyone has the right to be recognised equally without distinction or discrimination of any kind.

“Women’s rights are human rights!”

This very important day highlights the celebration of all women, in all their diversities – embracing all facets and intersections of faith, race, ethnicity, gender or sexual identity or disability.

Today is a celebration of all women who came before us, those with whom we now stand united and for those who will follow us.

Throughout history, women have come together to protest against the injustices they’ve faced, to support other women and to advocate for their rights and equality.

Since the establishment of International Women’s Day on the 8th March 1975, women have used this day of recognition to come together in solidarity to celebrate the achievements of women and to step on the discrimination, harassment and systemic barriers to equality and truly untethered success.

For more information head to:

www.iwda.org.au/take-action/international-womens-day/

PDA WA Associate Director, Melanie Hawkes, shares her ”I can do it” series.

Written by and starring Melanie Hawkes (and her dog Upton)

Growing up with three younger brothers, my parents were busy all the time. I either had to learn to do things for myself, or wait a while for someone to help me – not ideal. With hands like mine, sometimes it was a challenge to find ways to do things, but it has made me more independent. There’s no better feeling than being able to achieve something previously thought impossible. 

I only have the ability to bend my little finger on each hand, but can grip things between some fingers as well. Tasks I can do include feed myself with ordinary cutlery, write, type, knit, cross-stitch and prune my bonsais with scissors. What I can’t do with one hand I can usually do with the other, and if not, I use my teeth. ** Disclaimer: don’t try this at home. I look after my teeth by flossing and brushing every day and regularly visiting my dentist. **

Here are some videos of me doing some everyday tasks. It might be slow and frustrating to watch, but I am proud that I can do these things when nobody is around to ask for help.

You can watch my videos below or by going to the PDA YouTube channel (https://www.youtube.com/channel/UCMyTzhTbs2oLH-WZR18zX2Q). Whilst you’re there please check out our other videos and subscribe.

I hope that you enjoy watching my videos.

Melanie Hawkes, her sweet tooth and unwrapping a mintie.
Melanie Hawkes and how she writes with a pen.
Melanie Hawkes, her dog Upton and treat time.
Melanie Hawkes and her front-opening face mask.

There is one thing I wish I could do myself: put my own mask on. As I can’t reach behind my ears I have to get people to put it on for me. The solution? I pinned one to my hat, so when I slide my hat on, it comes on too. Or, if I have to wear it all day at work, I wear this mask that my awesome support person Amy made for me. It has a flap that I can open and close in order to eat and drink! And at the end of the day I can pull it off with my stick.

Accessibility during Australian Elections. Is enough being done to make elections accessible?

With elections looming this year and with accessibility to vote further challenged by COVID-19, PDA is interested to hear about issues that you have personally faced in previous elections – whether at a polling station, early voting centre, via telephone, postal or AEC voting.

We encourage you all to participate in our short survey so that we can ensure that all members of the community have equal access to the political process.

https://www.surveymonkey.com/r/JVYDNNG

Life in pandemic purgatory

PDA’s TAS Associate Director Tammy Milne has written a piece for the ABC around her world that continues to shrink as a result of COVID.

It’s a great read.

“When the coronavirus pandemic hit Australian shores, Tammy Milne knew she would have to call time on her 33-year teaching career.

“I decided to retire, or resign,” she says. “It was basically because of the risk factors of COVID and just not feeling safe.”

…Unsure of where COVID may be circulating in the community, Tammy now limits her movements in order to protect herself.”

https://www.abc.net.au/news/2022-02-08/underlying-health-conditions-omicron-outbreak/100792142

Buyer Beware! Protecting yourself and your money.

We recently heard the story about an Australian man who found himself in a considerable financial predicament following the interstate purchase of a modified wheelchair vehicle.

It’s a sad story that we wanted to share with you to encourage you to do your research and take care when making a purchase.

Whilst this particular case is more a case of lack of due diligence, it highlights the importance of knowing all the facts before committing to buying something – particularly big ticket items.

John (name changed) was in need of a wheelchair accessible vehicle. Unable to find something suitable locally, he did what so many of us do and looked online. Using a reputable, popular and respectable online car sales website John found his perfect car – in his price range, with his needed modifications and with the added assurance of it having been owned by a state health department – albeit not in his state.

Happy with his decision, John bought the vehicle and arranged for it to be shipped through to him.

When it arrived John went to transfer the registration to his home state and to sort out his insurance – and this is where his nightmare began.

It is important to note that each state and territory in Australia has its own unique rules and regulations when it comes to registering a vehicle transferred from interstate.

It is also worth knowing that if you buy from a private seller, protections such as cooling-off periods and statutory warranties do not apply. With this being the case, it is crucial that you thoroughly research the car, have it inspected (whether by yourself, a trusted local contact or an independent inspector) and find out what rules/regulations/expectations/requirements apply to interstate vehicle registrations before you buy.

CarsGuide has a helpful article on purchasing a vehicle from another state (https://www.carsguide.com.au/car-advice/buying-a-car-interstate-how-to-purchase-a-vehicle-from-another-state-80480), HOWEVER, it is important that you are fully informed on your state’s rules PRIOR TO COMMITTING TO A PURCHASE. We encourage you to speak to the Department of Motor Vehicles in your state.

In John’s case, whilst the car was sold in good faith and as advertised by the seller, the associated paperwork relating to the modifications was incorrect. Recorded as a 7 seater, rather than the modified 4 seater, the vehicle could not be registered locally without accurate paperwork. In an added twist to the story, when chasing up this discrepancy with the interstate engineer who had approved the modifications, it was discovered that he’d passed away and so could not correct his paperwork.

To have the required inspections and anticipated corrective work done to meet his state’s vehicle standards and specifications, John was informed that associated costs would be considerable and outside of his financial capabilities. Selling locally in its existing state as a non-registrable vehicle would mean huge losses to John.

The Office of Fair Trading could not help as it was simply a case of buyer error.

So sadly John learnt the hard way that due diligence is essential.

Please ensure that you are fully informed and have done your research before you make a purchase – particularly those with a high dollar value.

The One-Legged Sax Player on Home Modifications – Part Three

Written by PDA President, Andrew Fairbairn.

In my last blog published in May 2021 (https://www.pda.org.au/2021/05/13/the-one-legged-sax-player-on-home-modifications-part-two/), I wrote of the process I had to go through to engage a Project Manager, Builder and OT. Well……I am so happy to write that as of today, the 29thJanuary 2022:

THEY ARE NOW COMPLETE.

Let me take you back in time to the middle of 2021, and please forgive me with timeline, I am old, and I sometimes forget things.

By the end of May, all the reports were lodged with the NDIA by my OT and PM. I then had to wait while they were looked at, dissected, discussed, and according to the Delegate, LOST. You can imagine how that went down with me. I wasn’t impressed at all. My OT had to upload the Complex Home Modification Request (CHM) again, adding yet more wait time.

In the middle of October, yes, five months later, I received a phone call from yet another Delegate telling me that I needed to upload the OT CHM again, as they “couldn’t find it on the system” Well, you can imagine how that went down with me, so I insisted that the Delegate send me this request by email in accordance with my NDIS File stating that I only want contact by email. 

The email arrived, and I immediately replied to it, stating that I knew that the document was on the system, and I called the Delegate out. I also copied my reply to NDIA CEO Martin Hoffman, NDIA WA State Manager Ed Duncan and his Associate Manager Nathan Hills.

Now bear in mind, this has been ongoing now for 2.3 years. About 30 minutes later I received a phone call from Ed Duncan, wanting to know what was going on. I explained the situation to him, an lo and behold, 6 hours later a new plan dropped into my email, complete with all the funding required to complete the home modifications.

The build began in early November, with me and my wife moving into the backroom of our son’s house for the next 2.5 months.

I had to modify a few things with the design and placement of things as we went along, but overall, I now have a fully accessible house, complete with wide doorways throughout, ramps to the front and back doors, completely redesigned bathroom and laundry, new carport and a fully electric gate to access the back of the house.

As I close out this chapter, I implore you to keep on with gaining access to funding for home modifications. Stick to your plan, research, and know what you want, but mostly, don’t take no for an answer. YOU’VE GOT THIS.

BEFORE PHOTO


DURING PHOTOS

I will follow this up with a VLOG walk through to show the final product.

Stay tuned and stay safe.

What to do if you test positive for COVID.

So you’ve managed to get hold of rapid antigen test and you’ve tested positive for COVID.

So what do you do now?

  • IMMEDIATELY ISOLATE.
  • Call the National Coronavirus Helpline on 1800 020 080 for information about how to look after yourself when you are sick with COVID-19.
  • DO NOT CALL 000 for an ambulance UNLESS YOU NEED EMERGENCY SERVICES. Resources are being unnecessarily stretched with a reported half of ambulance call-outs being made by COVID-19 patients not requiring emergency services.

Most people with COVID experience no symptoms (asymptomatic) or mild symptoms which can be managed with over-the-counter medication. Rest, drink lots of water and eat well.

However, please call 000 immediately if you develop severe symptoms such as:

  • difficulty breathing
  • oxygen levels less than 92% (when tested with a pulse oximeter)
  • blue lips or face
  • pain or pressure in the chest
  • cold and clammy, or pale and mottled, skin
  • fainting or collapsing
  • being confused
  • becoming difficult to wake up
  • little or no urine output
  • coughing up blood.

For help on a State/territory basis (including information, resources and links for more support for people with COVID-19, including when you can leave isolation), go to:

Information in Auslan around COVID-19 plans, managing symptoms, and getting medical help can be accessed at:

https://www.health.gov.au/resources/videos/top-3-covid-19-vaccine-questions-inclusions-in-a-covid-19-plan-managing-symptoms-and-getting-medical-help

You can also find translated information about testing positive for COVID-19 in over 60 languages by going to https://www.health.gov.au/resources/translated/coronavirus-covid-19-information-for-people-who-test-positive-for-covid-19-or-are-close-contacts-other-languages

If you think that you may have COVID symptoms or suspect that you may have been exposed to COVID, please do not enter pharmacies, supermarkets or other retail outlets.

Instead please go to a testing clinic or have a family member/friend get you a test and deliver it safely to you.

With rapid antigen tests stocks becoming more readily available at supermarkets and pharmacies in the coming days and weeks, access to home testing will improve.

In the meantime, take care and stay safe.

PDA TAS Associate Director Tammy Milne’s recently published newspaper article.

Tammy had one of her articles published in the “Tasmanian Times” on International Day of People With Disability.

It’s an interesting read:

“I am disabled. I am on a fixed income. I am privileged and have a good and full life.

So when I wanted to attend a disability award dinner to support a friend who was nominated for an award I thought I would ask for support from the plethora of sponsors of the event as the tickets cost $140 each. I mean who is the dinner for?

And wouldn’t it look quite odd if people with disabilities couldn’t actually attend the dinner because of the cost? Or is this dinner like a lot of industry led initiatives where business pats it self on the back for providing paid services to people with disabilities and we paid for them and feel grateful they are having a dinner to celebrate but we aren’t included.

They actually make their money off the backs of the most vulnerable people in our community and yet set a new standard of Ableism when it comes to access for people with disabilities. We are simply shut out because of cost.

Now I’m not advocating for a ‘cancel culture’ mentality around this because it so cringe-worthy in its over thought and exclusion of people with disabilities but I am advocating for some provision to be made so that it is more accessible for people with disabilities to attend. I rang two of the sponsors and asked as I have been told there were some tickets available from sponsors, on both accounts I was fobbed off basically with, ‘no nothing for  you dear!’

My friend had her ticket paid for by her boss but her mother also paid for her own. So ticket pricing didn’t even take into consideration the cost to people who were nominated and the hardship this might thrust upon them and angst at having to weigh up attending and wearing the financial burden or not attending and thus making the whole event look like a farce.

Now lets get to the judging of the awards. It wasn’t until quite late into the organisation that a savvy person with disability asked the question, who is judging?

And yes they actually didn’t have anyone with a disability on the panel. In instances like this it is usual for the panel to be made up of a significant number of people with disability.

I mean you do want the awards to have credibility? Right?

My thinking around this is that those who organised the event have little understanding of inclusion or disability culture. In this case I am strongly advocating organisations to reach out to leaders in the disability community, ask questions, have us involved, become informed and educated.

We are very willing to contribute to anything that involves us to make it more inclusive  and accessible. The disability community embrace, the ethos of Nothing About Us Without Us as used in the seminal work of disability rights advocate James Charlton in the year 2000, about disability oppression and empowerment.

We want to be involved, we want to be invited to the table for discussion and listened too. I understand there is a great deal of learning around disability by the wider community and in the disability industry so just let us have a clear and free flowing dialogue about how we move forward from here.

3 December is the International Day of People with Disability.

PDA’s new Executive Team elected

PDA recently held its AGM, with elections held for the Executive Board positions.

It is with great excitement that we introduce the new PDA Executive Team:

Andrew Fairbairn – President
Talia Spooner-Stewart – Vice President
Sharon Boyce – Vice President
Tim Harte – Treasurer

With such a strong leadership team at its helm, PDA’s future continues to shine bright as it continues to represent and support Australia’s physical disability community.

PDA would also like to thank, recognise and celebrate three incredible outgoing Board Members who have been instrumental in growing and moving forward our organisation:

Liz Reid has completed three successful terms as PDA President and now sits as NT Associate Director. She has played an outstanding role in growing PDA’s presence, recognition and reputation as an important, necessary and valued representative disability organisation on the Australian disability landscape.

Jonathan Shar who did an outstanding job as PDA Treasurer and NSW PDA Director.

Kathryn Lyons who has stepped down from her role as QLD Associate Director.

Both Kathryn and Jonathan have been instrumental as both founding and committee members in the establishment of PDA’s Youth Network and we are grateful that they will continue to be driving forces in its growth.

PDA has big plans moving forwards and looks forward to having its Board and Members play a role in its mission to enable every Australian living with a physical disability to realise their full potential.

Proudly introducing our NSW Director, Mark Pietsch.

Following elections at our recent AGM, we are proud to introduce PDA’s NSW Director Mark Pietsch.

Mark has a a long history of advocacy and lobbying, assisting and leading projects at a grass roots level through to intergovernmental relations.

As a person with a movement disorder, steps are not his friend. As a person who relies on a mix of assistive technology, he strongly pushes for greater consultation with people with physical disabilities in regards to the design of home and living supports funded through the NDIS.

He prides himself on listening, although he is not afraid to speak up for those who struggle to do so themselves.

Mark personally describes himself as “an absolute nerd when it comes to legislation and policy”. With experience in lobbying for change at a ministerial level, his success has been notable in relation to employment supports in the NDIS to assist participants in self-employment and the open market.

He also enjoys collaborating and sharing resources to address equity issues in society.

His personal and business mission is to highlight the abilities of all people and to actively work to reduce barriers faced by the disability community through education, support and connection to resources to assist bridging the equity gap faced by our community.

His values are reflected in the small organisation that he leads, which stands by the mantra and primary values of “integrity, creativity, diversity, community and commitment”.

We are excited to have Mark join the PDA Team and look forward to working with him to make a positive contribution to the Australian physical disability community.

Please join us in welcoming Mark.

Have you registered for our AGM?

Have you registered to join PDA’s AGM this Saturday via Zoom?

We’d love you to join us to hear what we’ve been up to, what our plans are moving forwards and just to be part of the conversation.

PDA Members are invited and encouraged to attend.

It’ll be held via Zoom so, no matter where you are, all you need is a phone or an internet connection and a mobile, laptop, tablet or computer.

3:00pm Sydney/Melbourne/Hobart/Canberra
2:30pm Adelaide
2:00pm Brisbane
1:30pm Darwin
12:00pm Perth

To register, please visit:

https://us02web.zoom.us/meeting/register/tZAufuygrzgrE9KCLt1C2Mg3H9RvgFCXVxvo

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We really look forward to you joining us and saying “hi”.

Talia’s Bravery Trek helps Aussie Veterans.

PDA’s Vice President, Talia Spooner-Stewart, is currently involved in Bravery Trust’s 100km challenge to raise funds and awareness for Australia’s veterans undergoing financial hardship.

To promote the event, Bravery Trust’s Media and Corporate Affairs Manager Jo Crawford-Wynd has written an article around Talia’s efforts and the story behind her decision to take part in this incredibly worthwhile challenge.

“Wheeling to inspirational half way milestone”

“Don’t judge me by my disability but give me an opportunity to show my ability. I hope I can communicate to people that anything is possible if you put your mind to it and are given an opportunity.”

That’s the message shared by Bravery Trek participant Talia Spooner-Stewart as she passes the halfway milestone of this year’s Bravery Trek.

Bravery Trek is a virtual challenge of 100km in 50 days. Talia is halfway to her goal having clocked up 55km as she enters the home stretch.

“I’ve been fortunate to have so much support from family, friends, my work colleagues, and my physio team along the way. Everyone has been incredibly generous and it’s given me extra motivation to be consistent– I’m just so grateful for everyone’s support. The support pushes me to keep going,” she said.

Talia was diagnosed with MS in 1998 and became wheelchair reliant five years ago. She says it was the opportunity to attend the Invictus Games in 2018 as a volunteer that inspired her to aim high and finds ways to continue sports and stay active.

“The Invictus Games changed everything. It was an eye-opener to what could be done. I had always thought “No, I can’t do that because I am in a wheelchair”– but the Invictus Games changed that, it changed my mindset to focus on what I can do instead,” she said.

Talia has been cycling and wheeling her way to 100km and she’s been able to add weekly swimming sessions to her tally. Although not a veteran herself, Talia works at Leidos Australia with veterans as colleagues and customers. Leidos is a Foundation Partner of Bravery Trek and values a culture to support those who have served our country.

“Leidos’ commitment to the veteran community, and a key value of inclusion, is why I went to the Invictus Games in the first place – they were able to offer me that opportunity. Leidos is why I’m participating in Bravery Trek … I’ve had a few really big donations and it has surprised me. I really do appreciate everyone’s support,” Talia said.

“I don’t ask others for help very often but this event is so important and the messaging to support veterans is so important.

“As a community we are generous, and people support lots of charities, but the messaging about veterans can get lost in that. They have made the bravest sacrifice to support our freedom and we can all do more to support veterans when they need some assistance.”

A quick check of Talia’s socials shows that she’s been bombarded with messages of support, and there’s repeated use of the word “inspirational” by her supporters – it’s something she accepts with humility.

“If my actions can inspire others I’ll embrace it – and knowing the impact that the Invictus Games had on me, if my efforts can help change people’s mindsets and empower them to live a better life – I’m fine with whatever words they call me – as long as it helps others!”

To donate or send a message of support to Talia please visit: www.braverytrek.com.au/talia-spooner-stewart.

Funds raised support the work of national military charity Bravery Trust to provide financial aid and financial counselling to veterans who been injured during service and face hardship. Learn more at www.braverytrust.org.au.

Elle Steele shares her story around her disability and some great life tips.

Elle Steele is a PDA Member and former PDA Board Member.

She is also an incredible woman with many more strings to her bow. As a Paralympian, successful businesswoman, motivational speaker, disability advocate and a supportive, beautiful soul, she has much knowledge, insight and advice to share. Well worth a listen.

She has very kindly allowed us to share a video that she was involved with on the PDA YouTube channel.

Check it out by clicking below or by going to: https://www.youtube.com/watch?v=k8H5uwzUY4k

Don’t forget to subscribe to the PDA YouTube channel whilst you’re there.

Adapt – Reflect – Thrive

Earlier this week, PDA TAS Associate Director Tammy Milne, spoke at the TasCOSS (Tasmanian Council of Social Services) Conference. Her talk was around the theme “Adapt – Refect – Thrive”, where she shared her own experiences in accessing the COVID-19 vaccination as a person with disability and just where the system fell flat.

REFLECT

Covid 19 has absolutely shattered our world reality. None of us were prepared for the virus that not only took lives, (currently around 4 and a half million worldwide) but stole our lifestyles and forced us to lockdown, to vaccinate and to learn new skills like social distancing, hand sanitising and checking in to just about everywhere we go to protect the ones we love.

Australia thus far has done exceptionally in adapting to this new lifestyle and containing this virus. Very few of us in Tasmania have been personally effected by death from this insidious disease but we have been affected by systems and procedures that lack access to a cohort of our society.

That cohort is People with Disabilities.

Most of us here today know the marginalisation of people with disabilities in our society. Most of us here deal on a day to day basis in our organisations with people with disabilities. Yet, when COVID hit us in March 2020, No one in government was prepared with real understanding of the intricacies of the life of PWD and how covid would impact our lives and how we could be left behind, with no real planning for us leaving us precariously vulnerable.

In March 2020 I gave evidence at the Royal Commission into abuse and neglect of people with disabilities. My evidence was specific to how, as a person with a disability I was left vulnerable – as were many others who require the assistance of support workers to come into our homes on a daily  basis to care for our basic needs. I gave evidence that I felt like my house was a potential COVID hotspot as my support workers and my husband’s aged care support came in and out of our home daily.  We could only trust that they were doing the right thing to protect their vulnerable clients.

Reflect on how you would feel if this was you?

Fast forward to the vaccine roll out which started in Tasmania in early March. 

The booking system.

How do you think the online booking system has played out for People with disabilities and the wider Tasmanian community with functional literacy rates of 49%? That’s 49% of people who function in the world of reading and writing well enough to navigate our systems. This excludes peoples who are computer literate which is a whole other ball game as we know.

  • People with disabilities cannot access vaccines because they cannot use the booking system.
  • People who cannot read and write cannot access the vaccines because they cannot access the booking system.
  • People without a computer and who are not technologically literate cannot access the booking system.
  • People without a phone cannot access the booking system. 

Go to your GP you say? Well not all towns and rural regional areas had a roll out of GP’s who were willing to vaccinate their patients.

Can you see the gaps here? Can you see a pattern?

Bureaucracy has a real disconnect it seems with the implementation of systems and the people that use them. The most vulnerable don’t seem to be at the forefront of the thought process in this process.

Speaking from personal experience, I rang the booking line and took the next available appointment for a vaccine which was 100km from my home, a trip I took for both jabs. My daughter had to drive from Hobart to Launceston to get her first jab. We have mobility, we have cars, we have cash for petrol and we can navigate the system – but still it was arduous for us.

Reflect on this and how your clients may be impacted with the same story?

Now I’m no wilting flower when it comes to asking questions and finding out information. Back in March I rang the health department to see when PWD were scheduled to get a vaccine. How would ‘they’, those shadowy bureaucrats that are closeted in offices in tall buildings tasked with serving and protecting, how would ‘they’ know that I belonged to 1B? They didn’t know and I was fobbed off by someone who said the NDIS would be letting me know. So I rang the NDIS of course and was told by the NDIS that they had no jurisdiction in this matter and it was up to the state health department to implement procedures and the circle of buck passing went on and on.

It was only in late-June-early-July that dedicated Disability vaccine clinics were opened in Hobart and Launceston – but not in regional or rural Tasmania.

The messaging to the vulnerable, the real people of Tasmania, the elderly, the disabled has been very sparse, in some cases it’s like we have been totally overlooked in planning for the vaccine rollout – just as we were at beginning off the outbreak with support workers, PPE and isolation and protection.

ADAPT

It is said that, people with disabilities are often good problem solvers, thinking outside the box and creating solutions to problems that may not be apparent to others.

We know our own situations, we know our risks, we know our capacities and we are the best experts on our situations. We need to always be at the forefront of managements and bureaucracy when policy and systems are rolled out! 4.4 million people live with disability in Australia today. That’s a huge amount of adaptability. That’s a huge cohort of our Australian population. We need to be having our voices in the places where policy and systems are rolled out. 

THRIVE

PWD are not here to blame and shame government and agencies for things that are not right, we are here to team with and be advisors with government and agencies. We are large stakeholders in our community and our own lives and we need to be listened to and be heard. We are going to have to live with Covid for a long time to come and to thrive we are going to have to work together. So my treaty here is for those at the top, in those shadowy offices, in tall buildings, to talk to, listen and hear PWD.

To adapt and thrive we need to be valued as experts in our own field which is disability and be heard, our lives depend on it!


PDA Members are invited to our AGM

PDA’s Annual General Meeting will be held on Saturday 27th November 2021 via Zoom Videoconference.

PDA Members are invited and encouraged to attend.

3:00pm Sydney/Melbourne/Hobart/Canberra
2:30pm Adelaide
2:00pm Brisbane
1:30pm Darwin
12:00pm Perth

To register, please visit:

https://us02web.zoom.us/meeting/register/tZAufuygrzgrE9KCLt1C2Mg3H9RvgFCXVxvo

After registering, you will receive a confirmation email containing information about joining the meeting.

Meeting documents will be circulated ahead of the AGM.

We hope you are able to attend.

My Waste Journey

Written by Melanie Hawkes (PDA WA Associate Director)

Melanie was commissioned to write an article for “Housing Choices Australia” Annual Report. They are happy for it to be shared on our website.

As a person with a disability, I create a fair bit of rubbish. Items such as gloves and incontinence products cannot be helped, and I am not going to start limiting the use of those. I like to focus on what I can control and reduce that as much as possible. Waste is a huge issue that you can no longer ignore, leave for someone else to deal with or put in the too-hard basket. I like to think that my actions can inspire others, that their actions will inspire others and, before you know it, thousands of people are doing it and it is having a positive impact on the environment. 

I started paying attention to my waste when I moved into a brand new home in 2015. I needed some art to cover the boring green fences that three of my windows face. Buying brand new, weather-resistant art was not appealing due to the cost. I thought about doing mosaics, but didn’t want to break any plates or buy special tools or materials. So I started collecting bottle tops. Family and friends also gave me theirs and I was able to use ones of all shapes, sizes, colours and materials from milk, juice, beer, wine, soft drink and even lids off beauty products. I now collect anything useful, like can ring-pulls, plastic straws, corks and the small coloured silicone things you find in bottles of tablets to prevent moisture. They do rust and fade in the weather, but I like the effect it has. And I can easily and cheaply replace them if I wanted.

Not long after I started my recycled art, I read about Plastic Free July. It challenged me to pick one plastic item to reduce for the month. I picked plastic bin liners for my kitchen bin and replaced it with newspaper! It forced me to focus on what I was putting in my bin. With newspaper as a bin liner, I couldn’t put wet, gross stuff in it or I’d be washing the bin every week. Who wants to do that? So I started keeping a container for scraps in the fridge. I was giving these scraps to friends with worm farms, compost or bokashi bins (or the odd stranger from the Share Waste site!), but lately I’ve been taking it to a local community garden or burying it in my back yard for the earthworms to take care of. Eggshells and tea leaves are great for the garden, so I always keep them in a separate container on my bench for my plants. I wish I lived in an area that has a FOGO (or three bin system) bin collection. It would be more convenient, but you cannot always trust that council will do the right thing with it. 

I have since done courses on living smart and reducing waste. That one act of lining my kitchen bin with newspaper has led to many other changes at home. I now: 

  • * Make my own toothpaste and apple cider vinegar and cleaning products 
  • * Use solid shampoo bars and bars of soap instead of liquid in the shower
  • * Have a dog pooh worm farm
  • * Take my reusable shopping bags (and have some on the back of my chair for when I forget)
  • * Use reusable straws at home and in my water bottles (got my dad to cut them to size)
  • * Take my own containers and buy in bulk where possible 
  • * Sort my rubbish and return recyclable items to specialist places (e.g. light globes and ink cartridges go to my local library)  
  • * Return my soft plastic to the supermarket for recycling
  • * Use rechargeable batteries 
  • * Refuse single-use plastic bags when buying fruit and vegetables 
  • * Use soap nuts instead of washing powder in my washing machine 
  • * Use metal pegs instead of plastic ones on my washing line 
  • * Buy tissues and toilet paper made from recycled paper or bamboo and not ones wrapped in plastic 
  • * Use reusable paper towels (and wash them when dirty) in my kitchen and bathroom 
  • * Take my lunch to work to avoid buying takeaway 
  • * Have a water filter at home and refill my water bottles so I don’t have to buy bottled water
  • * Make my own dog treats and dried fruit in my dehydrator
  • * Return eligible containers for 10c refund 
  • * Collect the cold water when waiting for the tap water to warm up 
  • * Get my dog to pick up rubbish while out walking.

There are probably many more things that I could be doing, and I plan to add to this list as often as possible. But it is what I can comfortably manage for now. If you would like to start, or do more, consider these points:

  • * Start small. Don’t go out and try to do everything at once.
  • * New habits take time, and you do not want to be disheartened along the way if you encounter setbacks. Build on each small success.
  • * Make it easy and convenient to succeed. I have a normal bin, a recycle bin and a bag for soft plastics in the kitchen(so it’s easy to sort the rubbish where it’s created). When the bag is full, I put it at my front door so I remember to take it back to the shops next time I go. 
  • * Be a conscientious shopper. Question every purchase you make. For example: do you really need it? Is there a more sustainable alternative (e.g. wet wipes vs cloth wipes that can be washed)? Can you easily make it yourself? Can you reuse the packaging (e.g. beetroot in a glass jar could be better than a tin)? Where can I buy it locally (e.g. a local farmers market vs a big chain supermarket)? Can I return the packaging and refill it? Can I make do with something else I have at home (e.g. you can make your own spray and wipe mix, and use it for everything in the kitchen, bathroom and even the toilet, instead of buying three different bottles)? Do I need it brand new or would second hand do?
  • * Decide on a reason for doing this. Don’t do it just because someone told you to. Make it a passion. Know that you are helping the environment. It will probably save you money too! 
  • * Educate yourself. Your local council can tell you how to sort your rubbish correctly, and there are many online resources. Ask plenty of questions until you are satisfied with the answer. There are no dumb questions, ever! 
  • * Join your local community garden and Buy Nothing Project group to find like-minded people who can support you in this journey. You can share your experience with others and learn so much. 

Looking after the environment is a shared responsibility. If we all do as much as we can, it will go a long way to ensuring a brighter future for everyone.

Good luck! 

This Mental Health Week, Tammy Milne shares her personal story.

⚠️ TRIGGER WARNING. This article discusses suicidal feelings.

This week, as part of Mental Health Week, PDA’s TAS Associate Director Tammy Milne, was a speaker at the North West Film Society.

Her honest, heartfelt, poignant and incredibly brave speech took the audience on an emotional journey that shows that no one is vaccinated against the black dog of depression.

Tammy has very kindly allowed us to publish her words and her story and we are extremely grateful to this wonderful, kind and courageous woman for normalising depression and giving a voice and hope to others who may have similar journeys.

“I would like to acknowledge the country in which we are all meeting tonight.

This is Palawa country in lutruwita on the land of the punnalir.planner people.  I acknowledge and pay respect to Aboriginal people as the traditional and original owners, and continuing custodians of the lands on which we all gather today and acknowledge Elders – past and present and emerging. 

Thank you everyone who has come along tonight to hear this very poignant discussion for mental health week and thank you for the opportunity to share my story and the story of 1000s of other people with disabilities all over. 

As you are well aware I’m a person living with disability. I want to talk this evening about intersectionality. How disability and other conditions are not mutually exclusive. How we don’t often think of people with disability and Breast cancer, or people with disabilities and cardiovascular disease or people with disabilities and mental health. Why is that? Because PWD seem to take up space  in our minds,  as a particular group that’s in our minds don’t move outside that sphere or silo. 

We compartmentalised disabilities and PWD as one diagnosis  and don’t think more broadly of other issues, like mental health that can accompany person with disability on their life journey. 

But statistics inform us that 32% of people living with disability experience high or very high psychological distress compared to 8% with out disability. Another study found that 43% sufferer psychological distress in conjunction with their disability. So if you look at the way society treats people with disability, our society, here in Australia you will be able to understand why PWD have high rates of depression compared with the wider community. We are often treated with fear, people don’t know what to expect with interacting with us , we are ignored, we are pityed , feel shame and are most often treated as less then the rest of the community. 

A really great show to watch on telly   and  is on SBS. Its  called Australia what does Australia really think of disability with Kurt Fearnely . Its an eye opener. From the show a survey was collected and 

72% of respondents without disabilities said they felt sorry for people with a disability.

72% agreed that people sometimes make fun of people with disability.

So what Im saying here and what the statistics confirm  is there is no wonder PWD suffer from depression! 

My own story is a winding journey and the cumulative effects of all the things already spoken about. 

I was a fire Cracker  ready to go off. I had internalised all the trauma of disability and the discrimination, the personal attacks, the pain that I had suffered all my life  and in 2018 i exploded.

In a quiet,  under the radar sort of way, that involved pills and a good long lay down that I hoped I would never  wake from. I had had enough!  The two years prior to this were tumultuous! I suffered a back injury at work and fractured three vertebrae in a fall. 

The two year prior to my attempted long sleep looked like this! A catalyst of events that fused together in a nightmare scenario that I couldn’t dig my way out of. I hurt my back, went through the workers comp. trauma. I mean I wasn’t taken seriously because of my disability it took 6 weeks from the injury till I got an MRI that actually found the fractures, 

And then I started a new job with a principal who wasn’t too keen on having a person with a disability thrust upon them by the department. I spiralled down down down into self doubt, every time I received any form of set back,   Or criticism;  constructive or not it felt like a body blow  I felt worthless.

I went  to a very nice doctor in Launceston and told him my story and he said quite frankly you have PTSD. What you have experienced, you have PTSD. 

I still am hyper vigilant  in my surrounding always looking for an exit if I need it. I have a very strong fight or flight response.  Which looks like I get pissed  off and leave but in reality it’s my coping mechanism to escape any further trauma by just leaving. I startle  easily, I jump easily  at any loud noise  or sound

How did i start getting through it. Well I recognised that its me and it not me! Its not my fault that  society see people with disabilities as unreliable witnesses to their own health needs. Its not my fault that people see people  with disabilities as inferior. Its not my fault that the principal couldn’t see my value. Its not my fault that all people with disabilities are not valued. I am me and I embraced that. I embraced my disabilities. I still get discriminated against. Especially outside my home city and even in my city but I know its not my fault. It their problem!

But i can do something about it. I quit my job with the department of education last year after 33 years. I embraced disability. I’m now the Tasmanian associate director of physical disabilities Australia. I strive to make our city our Tasmania and more inclusive and equitable place for all. My work as I see it now is to make life better from now on for all people. That’s why I put my hand up to speak at events like this. 

My take home message is that mental health should be treated like any other health condition, we get mammograms, paps smears, colonoscopy, prostrate checks, cardio vascular checks and mental health checks should be though of and treated no differently. Go to a councillor, seek out a psychologist.

Health is holistic;  it’s mind and body.

Thank you again for allowing me to share.”

References:

https://journals.lww.com/psychosomaticmedicine/Abstract/2007/05000/Joint_Effect_of_Depression_and_Chronic_Conditions.7.aspx

https://www.sbs.com.au/guide/article/2021/07/20/sbs-asks-what-does-australia-really-think-about-disability-old-people-obesity

https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/people-with-disability/prevalence-of-disability

📷 thanks to Vicki Carman-Brown

PDA’s Ambassador Dr Dinesh Palipana OAM to present webinar “Vaccination and disability: staying safe in our COVID world”.

Next Thursday Physical Disability Australia (PDA) and its Ambassador, Dr Dinesh Palipana OAM, will be hosting a free Zoom webinar around the importance of vaccination – particularly in light of looming plans to lift lockdowns.

With vaccination numbers amongst Australia’s disability community grossly inadequate, next month’s anticipated reopening will put our most vulnerable at risk and it’s important that this is addressed before it’s too late.

In this webinar Dr Dinesh will debunk the myths surrounding the COVID-19 vaccine, answering questions and urging the medically able unvaccinated to get the jab.

If you have vaccination concerns, are waiting to receive your first or second jabs or simply want to hear the facts from a medical expert from the disability community…this webinar is for you.


6:30pm NSW/VIC/ACT/TAS

6pm SA

5:30pm QLD

5pm NT

3:30pm WA


PDA Members and the wider community are encouraged to attend.

Dr Dinesh is happy to answer your questions and asks that you send them to promotion@pda.org.au once you have registered.

To sign up for the webinar please go to:

https://us02web.zoom.us/webinar/register/WN_LDgl8wZmT5u8GB3vmQz8Pg


Join Dr Dinesh. 

Hear the facts. 

Make an informed vaccination decision.

Be safe.

Why you should join Physical Disability Australia.

Written by Paul Williamson – PDA ACT Associate Director

Why you should be a member of PDA

Physical Disability Australia (PDA) is the national peak body representing people living with physical disabilities, their families and their allies in Australia. It has members in all states and territories.

What do we do?

PDA undertakes a range of important work, including:

• Identifying the needs of people living with physical disabilities and communicating these needs to government.

• Providing a strong voice for people with physical disabilities to express their views and priorities.

• Evaluating programs and services supporting people with a physical disability.

• Undertaking advocacy and raising public awareness of issues facing people living with a physical disability, and

• Providing support for people with physical disabilities to develop agency and exercise their rights.

Fundamentally, the overarching focus of PDA is on promoting rights and improving the lives of people with physical disabilities and their families.

Why do we do it?

While many of us face hardships at one point in our lives, for people with a disability these barriers can be more frequent and have a more significant impact. Barriers include a physical environment that is not accessible, lack of access to appropriate transportation, lack of assistive technology and the prevalence of negative attitudes towards disability and services, systems and policies that are either non-existent or hinder the involvement of people with disabilities in daily life.

The disability community has been fighting for decades to reduce the impact of these barriers. While as individuals, we are limited in the impact that we can have – as a collective, the disability community can have a powerful voice. If harnessed,people with disabilities can use this voice to influence policy and practice to benefit all people living with a disability.

Who do we represent?

PDA represents people with a wide range of different disability types.

Data from the Australian Bureau of Statistics show that approximately 1 in 6 (18%) people in Australia -or about 4.4 million people – live with a disability. For over three-quarters (77%) of these people, their primary form of disability  (i.e. the condition causing the most problems) is physical. This includes diseases of the:

• musculoskeletal system and connective tissue (30%), such as back problems and arthritis

• ear and mastoid processes (8.4%), such as hearing loss and tinnitus

• circulatory system (6.3%), such as heart disease and stroke

• nervous system (6.7%), such as cerebral palsy and multiple sclerosis.

Together, this represents a significant interest group. By coming together and organising, people living with physical disabilities have the power to ensure their concerns are listened to and taken seriously by all levels of government.

Join us today!

If you live with a physical disability, are a family member or even an ally – you can help support the work of PDA and improve the lives of people living with a physical disability by becoming a member. Membership is free and signing up is as easy as providing some basic information online at https://www.pda.org.au/membership/.

If you are already a member, consider encouraging your friends and family members to join PDA to help support our work to ensuring a fairer and more equitable society for people living with a physical disability.

You will become part of a comprehensive and diverse community of Australians living with physical disabilities and help ensure that PDA can speak authoritatively on behalf of a broad range of lived experience. Becoming a PDA member also allows you to input into our activities and contribute to our work.

For more information, please do not hesitate to call PDA on 1800 732 674 or email us at manager@pda.org.au. If you live in the ACT, I’d love to hear from you – feel free to give me a call on 0402 974 010.

How PDA’s Social Hours helped me through Melbourne’s 2020 & 2021 COVID lockdowns

Written my Robert Wise

I came across Physical Disability Australia while searching the web for activities and groups for people with a physical disability. During my search the PDA website was one of the options that came up. As I was reading the information on the PDA website, I noticed they were holding Social Hours once a fortnight using online video chat software known as Zoom and I decided the join the organisation and join these Social Hours.

PDA hold 2 social hours which includes a youth chat for under 30s and the general one. These social hours are open to all members of PDA. I decided to join the general chat. Pre-registration is required for the online chats. I took the plunge and signed up for my first social hour in June 2020. On joining my first one I felt rather nervous, but I was welcomed by the other regulars on the chat including Jonathon, Andrew, Liz and Natasha to name a few. Many topics are discussed including what we do, how we cope with life and to share some of our stories – both funny and not so funny.

The social hours helped me overcome some barriers during the 2020 COVID lockdown as I was stuck at home. All my regular activities had been cancelled including my Tenpin Bowling and the Men’s Shed. I live alone and, apart from one or two visits a week by support workers and therapists, my disability life can get extremely hard and lonely. Even though we have not met yet, I feel I have made some new friends through the PDA social hours. I counted down days every fortnight to join the next one. 

I would like to invite all members of PDA to give it try. You may meet some old friends and make some new ones.

PDA Social hours are held on the first Monday every month at 7pm AEST.

For more information check out PDA’s Facebook page or email promotion@pda.org.au.

To register for a Social Hour go to:

https://us02web.zoom.us/meeting/register/tZYqc–qqjkjG903J2KoieI9ASVSig7b4mxr

Hope to see you at a Social Hour soon.

PDA proudly welcomes our new SA Associate Director, Krystal Matthews, to the team.

Krystal is a wearer of many hats and her ability shines through; but none are more important to her than setting a strong example for her family and advocating for others who are margalised and largely underestimated by mainstream society.

The 36 year old has worked for South Australia’s peak government social housing provider for over 10 years. This firmly places her in a position to help support people experiencing complex issues. In addition, she has developed programs to support and make service improvement to large-scale psychosocial community issues such as homelessness and Family and Domestic Violence.

Krystal was born with Cerebral Palsy and is a wheelchair user.  Overcoming challenges and preconceived notations of what she was considered (by society) to be capable of, drove her determination to be respected for what she can do, rather than what people think she can’t, or shouldn’t do.  

Krystal has 2 beautiful daughters, teaching people about equality, inclusion, and the beauty of diversity in society was intensified with motherhood. She is currently raising an energetic 2 year old toddler whilst in a wheelchair, which she reports as being both challenging and magical. Krystal enjoys spending time with family and friends, drinking a glass of wine and is a 90’s music tragic. 

Krystal is determined to ensure the lived experience of people with a disability shapes the way services are created and delivered in the future. She is also passionate about education awareness and safeguarding the rights of people with a disability in future policy development and negotiations. Krystal wants all people with a disability to feel safe, confident and capable of achieving their goals. Krystal hopes that her professional experience in advocacy and development, combined with her lived experience and determination to make a difference, will help further positive changes for people living with disability. 

Please join us in welcoming Krystal to PDA’s team.

The Importance of Associating Reasonable Adjustments with Equitable Outcomes.

Written by Tim Harte – PDA’s VIC Director

For people with disabilities, reasonable adjustments are a common challenge to negotiate.  Reasonable adjustments can include modifications to the environment or conditions of any area of public life, such as work, study, or provision of a service (e.g., a local library), that allow people with disabilities to work safely and productively or to access that service. In an educational setting, reasonable adjustments can include extra time for assessment tasks, assistance in hands-on learning to complete physical aspects of learning tasks (e.g., shifting a microscope into position on a desk), or the provision of learning materials in an alternative format, such as large size font or other formats. 

During my time undertaking undergraduate study, I have found there is a lack of knowledge and understanding of reasonable adjustments by staff of tertiary education institutions and the Australian population. I have observed that physical reasonable adjustments are understood better, perhaps because the adjustment is more observably connected with the physical requirement e.g. if a physics assessment task requires a student to jump up and down with an accelerometer, the average person assumes and accepts that a student in a wheelchair will require an altered assessment task. From experience, reasonable adjustments required for non-physical disabilities or physical disabilities that are less well-known, obvious and observable, such as those occurring from complex medical conditions, are understood and accepted to a lesser extent, sometimes to the point of academic staff viewing the reasonable adjustments as an unfair advantage.

After conversing with fellow students and academic staff about the reasoning behind my own reasonable adjustments,there has remained a lack of understanding for the rationale of non-access related reasonable adjustments, such as extra time for assessment tasks. Extra time for assessment tasks can be seen as an access related reasonable adjustment e.g., a student cannot write as fast due to a disability so extra time is allotted to assessments, but the average student often runs out of time in assessment tasks, hence could claim they should have more time too. Fundamentally, I think it is the implementation of reasonable adjustments for equitable outcomes that are least understood and part of this is due to the lack of understanding of ‘equity’. 

Equality means people have equal rights and equal access to certain social goods and social services; equity, on the other hand, acknowledges that society is not a level playing field and each person is in, or born into, different circumstances,hence specific, advantageous resources/opportunities need to be allocated appropriately to attain equitable outcomes. The broader Australian populace needs to understand that, due to both disabling aspects of our physical environment (social model of disability) and unchangeable impacts our impairments have on our lives (radical model of disability),people with disabilities experience inequity every day of their lives. The average Australian does not realise that ‘a fair go’ is denied to people with disabilities. 

Education, via personal story telling, breaks down perceptions of difference and highlights similarities and shared experiences, thereby humanising people with disabilities in the eyes of non-disabled people. This facilitates understanding and empathy of the daily plight of people with disabilities – assisting the non-disabled population to ‘walk in our shoes’ and comprehend the lives and experiences of people with disabilities, as well as the requirement for reasonable adjustments to achieve some level of equity.  

On the Platform with Melanie Hawkes

Written by Christine Kerr – “Platform Stories” Editor

Have you heard about the fabulous online magazine Platform Stories?

The site is dedicated to empowering women with disabilities from around the world through authentic, positive and inspiring content that is frank and without sugar coating.

Through its stories, Christine Kerr as Editor explores “the trials and tribulations, love and laughter, travel and adventure, challenges and changes… all from our own unique perspectives.”

A wonderful article on PDA’s WA Associate Director, Melanie Hawkes has just been published and it’s well worth a read.

https://platformstories.com.au/2021/07/on-the-platform-with-melanie-hawkes/

The differing symptoms of COVID-19

Yesterday Dr Norman Swan (Producer and presenter of the Health Report) reported on new evidence from the UK about the most common symptoms of COVID-19. Don’t assume that just because you’re vaccinated, you won’t have any COVID symptoms if you come in contact with the virus. You may still be infectious and capable of spreading the germ.

Depending on your vaccination status, there are different symptoms that present.

Some could easily be mistaken for a common cold, so please don’t dismiss these as being nothing to worry about – particularly with so much of Australia currently affected by COVID outbreaks.

The 4 MOST COMMON PRESENTING SYMPTOMS for each of the groups are:

* Fully vaccinated: headache, runny nose, sneezing, sore throat;

* Partly vaccinated (one dose): headache, runny nose, sneezing, persistent cough; and

* Unvaccinated: headache, sore throat, runny nose, fever.

Some people might register all the symptoms, however many will only get one – most typically a headache.

Dr Swan’s take-home message is: “If you have any one of these symptoms, even in the slightest way, you’ve got to get tested.”

https://www.abc.net.au/radio/programs/coronacast/how-did-it-all-go-so-bad-so-quickly/13421314?utm_content=INTRO&list_name=23CA1130-277A-4852-82D9-20D1BB5DD3DE&promote_channel=edmail&utm_campaign=coronavirus-report-smh&utm_medium=email&utm_source=newsletter&utm_term=2021-06-28&mbnr=MjI5NDQ4ODY&instance=2021-06-28-20-22-AEST&jobid=29315997&fbclid=IwAR3hMSW73nSiv4SRujDYtgOZqmqBhO8OrxdUQKFMIC76ahhj73hXUpSgoO0

Keep up to date with the current Australian COVID

As Australia moves to greater restrictions in our battle with COVID, it is important that we are aware of how this is affecting our local areas and the role we must play in keeping ourselves and others safe.

With health authorities concerned about the spread of the highly infectious Delta variant, please keep on top of updates in your state/territory:

NSW – https://www.health.nsw.gov.au/Infectious/covid-19/Pages/latest-updates.aspx

VIC – https://www.dhhs.vic.gov.au/media-hub-coronavirus-disease-covid-19

SA – https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/conditions/infectious+diseases/covid-19/about+covid-19/latest+updates/latest+updates+on+covid-19

TAS – https://coronavirus.tas.gov.au

WA – https://ww2.health.wa.gov.au/News

ACT – https://www.covid19.act.gov.au/updates

QLD – https://www.qld.gov.au/health/conditions/health-alerts/coronavirus-covid-19/current-status/urgent-covid-19-update

NT – https://coronavirus.nt.gov.au

Please follow advice from your local authority.

We’re all in this together.

Stay safe everyone.

Educating for Physical Disability and Health

Written by Sharon Boyce

My ongoing health journey and understanding disability and health is especially important in these covid times. Accessing the equipment necessary for diagnosis and treatment is essential and when you can not get onto the CAT Scan bed this is a major problem. We have to make it work. We have to ensure equipment is accessible and suits everybody. We also need to be educated about how we can adapt situations and support people with high level complex physical disability.

I thought I might share with you some of the snapshots and issues that arose and had to be explored over the past two years of my life and health journey. I also thought I could look at some of the specific problems that arose and some interesting solutions that I found existed. 

I should let you know that I am now back at home and easing back into work after spending many months in and out of hospital with septic shock of my kidney again. At the start of the crisis I thought I was going so well avoiding having to go to doctors and mostly self quarantining – until I was rushed to hospital in Toowoomba and experienced the Covid-19 environment first hand and from a disability perspective! The many Zoom and team sessions came together to help me in surviving many weeks in hospital, along with my family and carers helping in every area and watching everything that was done. 

There were some interesting discussions and outcomes that followed, with some massive gaps in disability care, attitude and understanding being raised. The doctors were good and some of the nurses tried very hard to understand disability, but even they really were learning as we went along. There needs to be so much more education available to those in the medical sector around all areas of disability and life issues such as the need for space, Disability-considered equipment, attitudes and perception. There seemed to exist a very real lack of consideration and workability of hospital layout in terms of illness, physical disability. There was no room for my equipment and equipment (such as hoists, slings and a shower chair) that made my life work were just seen as inconveniences and something that took up valuable space. 

Assumptions were made about my ability to make choices, despite my cognitive abilities and very complex disability needs requiring a lot of flexibility. My family and carers were sometimes asked inappropriate questions about my choices and why I needed certain equipment or certain medications. I was highly allergic to one such medicine and it was only because of a carer and my own surveillance of the process that it was stopped immediately and no major issues resulted. There was no knowledge about using equipment or even accessing CAT scans or X-Ray equipment that worked around my needs or condition. Even medical choices I made were questioned because attitudes of some staff were condescending and misinformed about physical disability. There also seemed to be an attitude amongst staff that because I was so close to death, they should just make every decision and I should not question it or how they did it. This did not work because they did not understand disability, instead simply making assumptions and conclusions around their limited understanding. As a result there were times that my care and recovery were placed in jeopardy. Issues of medication and very limited time frames for actual survival also compounded the situation. 

Once I began to improve I tried to engage staff and educate them around hoisting, stomas, showers, skin care and overall attitude. I believe disability awareness has to be built into all university training courses across all areas of health. Hospital was accommodating, in most cases but, if I didn’t know my rights, hadn’t planned ahead and didn’t have the a ability to communicate my needs, the stay would have been impossible. I am so lucky I came out of hospital before Toowoomba became a hotspot. I would not have been able to have my family support and care team readily available on site helping to make everything possible and my care safe and doable. 

As a person with high level complex disability and specific needs with care I thought I knew the policies and way things could be done to ensure best practice and great outcomes. What I saw was huge gaps in education, awareness and attitude at every level. I could not get on to the CAT scan bed with my hoist and two carers helping, as well as the Radiology staff. I only had a very small window of time to live so the process had to done as fast and carefully as possible. I was relying on my two carers to show them my documented plan and use my hoist and also to ensure I wasn’t rolled or moved in any way to damage my neck and spinal cord.  Surrounded by wardies and the X ray staff my carers literally had to frequently remind them of my unstable spine issue so they wouldn’t roll me. The hoist wouldn’t fit under the cat scan bed, even though it was a new one, so they really didn’t know what to do. Vital minutes were ticking away. 

They then remembered they had a new piece of equipment – a hover mat that they could use. I could have CAT Scan and they could be done easily and safely. This took the pressure off the Radiology team and my often very short health requirements. If I could not have the scan we could not progress to the next stage of medical help. This piece of equipment is lifechanging for people who cannot transfer any other way onto a CAT scan bed or a X-Ray bed. It literally is like a hover craft that inflates from your bed and moves you across to the other space. It takes about five minutes in total and you are secured and safe. The only requirement is that the staff at the center know that it exists, first of all, and how to use it speedily and safely. I was so lucky that this was purchased by the hospital and that there were some staff who knew it existed. There was a team who worked together with my complex physical disability and high level sepsis that actually inflated the hover mat and moved me across to the CAT scan to actually perform the scan in enough time to ensure the next stage of medical treatment could continue. This piece of equipment is a life saver and we need to advertise the fact it should be available in every hospital. 

This was the first of many issues with equipment access and space. I only know that I would not be here if it wasn’t for some doctors and nurses who knew about disability equipment and support and also how to communicate and understand a person with high level disability and high level sepsis. It also needs to be said that without my carers and family helping with my advocacy and care this supportive situation would not have been possible. I might not want to say this and I believe I am very strong in this area, but when you are at your weakest you need plans and support to ensure best outcomes for recovery and survival. You also need equipment that enables you to get the required diagnosis and ensure that your situation is supported and your other areas of health are not damaged in any way. 

The new hover mat if a essential piece of equipment that makes the other essential areas of health such as cat scan, MRIs and X-Ray beds work for individuals who in the past could not access this safely and effectively. These type of innovation in the health sphere need to be celebrated and the information shared across all of our disability communities. There is constant research and equipment being developed and we need to push for more of this and also share our good news stories about how things work and when they don’t we need to question how we can have a solution created. 

To see how the hover mat works go to PDA’s YouTube channel by clicking on the link at the bottom of this blog. Don’t forget to subscribe to PDA’s channel whilst you’re there.

I have now recovered and am currently back at home and hoping that I stay healthy and can keep up my current workload. I am enjoying working with the Independent Advisory Council and my many other disability groups I work with. I never believed I would be actually givinglectures and zoom sessions about a first hand experience of life with disability in the covid-19 environment. (Some of them were very first hand, still being in hospital.)

It is so important to create positive change across health and especially for people with disability. There are many attitudes that need to be changed and also many disability issues to be explored and educated about. We need to continue to ask how we can make this health area more inclusive and more understood. We all have certain needs and things that impacts in this space because of our disability.  We need to break down barrier and create conversations so when we are at our weakest and most vulnerable the people who are tasked with our health recovery understand what they are dealing with and how they can help make life better for both sides. There was some very scary moments and without my support my recovery wouldn’t have been as smooth as it was able to be. 

Grief and disability

Written by Tammy Milne – PDA’s TAS Associate Director

Phil and I met at the Footy Club in 1987 and his pick up line was a classic “I’d like to get you alone”. From this I deduced that with a line this lame he must be okay! He was 33 and I was 23 years old.

We were together for 33 years until his death on the 17th May this year, 2021.  He was 66.

What makes our story different from other love stories and stories of loss and  grief?

 I am a woman with a physical disability.

Although this shouldn’t make a significant difference to our relationship or any relationship of love and loss it does.

Here is why.

As other people with disability will know the pressure of society, discrimination and the constant barriers put in the path both physically and psychologically take a huge toll on people with disabilities on a day-to-day basis and the cumulative effects can be debilitating resulting in lack of confidence and self belief. 40% of PWD live with depression while those without disability are only 8%.

Adults with disability are more likely (32%) to experience high or very high levels of psychological distress than adults without disability (8.0%). This is particularly true for adults with severe or profound disability (40%) (ABS 2019c)

So having a partner who supports your every endeavour with steadfast dedication and solidarity really helps to negotiate this world and support a partner to be a the best they can be. 

That constant reinforcement that you are ‘good enough’, you are, ‘clever’, you are ‘normal’ should be bottled and available to everyone. The quiet love that’s stands on your sideline and cheers for you regardless of the situation.  When this is gone, the memories and years of support are still there and the therapeutic work of their support is still there but they, the person, are not and the loss is huge. It’s like your team of two has been cut to one and a whole side of yourself has been taken away.

I’m not talking nasty co-dependency. I’m talking about the best of what kindness, love and genuine dedication to each other gives to a relationship.

So that’s the loss of the emotional support. So then add the loss of the physical support. The day-to-day jobs that as a partnership with one person disabled the other takes on; like checking the mail, like getting the newspaper from the driveway, like the million other little things they do that makes your life seamless. Even with NDIS support and support workers those jobs that seems to have been absorbed by the other as a matter of osmosis can not be replicated.

Even the simple fact of safety, of having that extra person in the house that protects you when a medical emergency occurs. If you fall or there’s a medical situation they can phone for outside help. The unpaid care that person has undertaken over the years of your relationship can never be estimated in monetary terms, but would potentially run into millions of dollars.

Our love was deep, dedicated and a bond of strength. We were equals. The gap left by this loss and the subsequent grief cannot be quantified as any more than an ABLEd relationship (a relationship where both parties are not disabled), but there is qualitative evidence in the need for additional physical supports and time will only tell if the loss of the emotional support will result in other supports being needed.

In conclusion a disabled/abled relationship provides both parties with a rich and full life. It cannot be argued that the relationship is not equal, but the loss, grief and emotional and physical support does impact and does result in a more raw loss for the disabled partner left behind and a unique perspective on grief and loss.

[From PDA: Dear Tammy. Thank you for sharing this tribute to Phil, your celebration of a relationship built on true love and your heartfelt and incredibly moving exploration of grief. On behalf of the PDA Family we send you our sincere condolences, love and support. RIP Phil. 💔]

Introducing Paul Williamson – PDA’s new ACT Associate Director

Paul Williamson has joined Physical Disability Australia as an Associate Director for the A.C.T..  He has a strong interest in furthering the employment opportunities for people with disability, having experienced some of the challenges firsthand – going from ‘fit and healthy’ to living with disability in a relatively short period.

He has over 20 years of experience working in senior positions in the Commonwealth Public Sector across several Department’s including Finance; Industrial Relations; Employment; and Attorney-General’s.  He has worked on the development of key Commonwealth legislation, provided policy advice to Senior Officials, and administered multi-million-dollar grant programs.

In his late twenties, Paul was diagnosed with ankylosing spondylitis and while the disease is controlled by medication it has led to multiple joint replacements.  Paul also required brain surgery in his 30’s to correct anarteriovenous malformation (AVM) in the brain.

Paul holds a Masters Degree from the University of New South Wales and is an Honorary Associate in the Centre for Disability Research and Policy at The University of Sydney.

Welcome to PDA’s Board Paul. We look forward to utilising your vast experience and commitment to making a positive difference for Australia’s disability community.

Trapped but living

Written by Kathryn Lyons – PDA’s QLD Associate Director

For the last six months, whenever I got my menstural cycle, I would lose my voice. In the beginning it was only for 24 hours, but for the last three months my voice would disappear for weeks.  I would be talking fine and then the next second nothing. Not even a whisper. It is the most bizarre thing. 

Currently, it has been 22 days without my voice and it has been really hard trying to communicate with people. Auto correct has been very fun to deal with. 

At times I just feel trapped. When people don’t understand you and you cannot verbally communicate, it gets very frustrating watching others trying to guess what you are trying to say even if it’s the simplest thing such as “Hello. How are you?” or “Milo”.

I am currently using a text to speech app, but the voice sounds so sarcastic and nothing like me, giving a different context to what I want to actually communicate.  

I just feel trapped inside myself unable to speak out as I once could. 

But I knew I could not let this stop me from living. 

I had to adapt quickly and find a way to go forward with this!   

So, I kept streaming and changed things around where, instead of talking, I would play music and chat via the chat box with everyone and it has been working amazingly.

Still determined to break down the walls and taboos of the disability area, I started to branch out. I took up modelling, which is going well. In a few weeks I am going to be involved in an amazing fashion show where I will be on the cat walk – or as i like to call it, “Catwheeling”. 

I am still active in my advocacy work, raising awareness about diversity as well as public speaking. As I find different ways to adapt without my voice, I am determined not to let it stop me.

My main focus is to make changes within the community and around the areas of sanitation, hygiene and infrastructure – working on creating real inclusion. 

I even started going to the gym, hoping that through building up my core muscles my voice will one day return. 

However, even if this does not happen, I have learned that I can adapt to any situation. And so can you. 

Just because something happens or something in us changes, this does not mean we have to give up. 

We can keep going. Remember it is okay to feel trapped in yourself at times, so long as you keep going forwards. 

You just have to get up every day with a smile on your face and tell yourself “I am going to have a great day” – even if you cannot verbally say it!

No matter what challenges life throws at us, we are all strong and can get through it. 

I refuse to allow curve balls stop me from achieving my goals. I will continue to make change in the world and live my best life.

Alongside and in spite of my disability, potential ongoing deterioration of my medical conditions and life in general, I will continue to adapt and keep moving forwards. 

You can too!

Kathryn Lyons 💕

The One-Legged Sax Player on Home Modifications. Part Two

Written by Andrew Fairbairn (PDA Vice President/WA Director)

Previously I shared my Assistive Technology Home Modifications journey. This is an update, Part Two, if you will.

I engaged the services of an Occupational Therapist who has lots of experience in delivering comprehensive and high-quality Complex Home Modification, (CHM) assessments. She is very good at her work and the finished AT CHM document is a sight to behold. 40 pages of photos, recommendations and justifications for what I need. Very professional work.

From here I engaged the services of a Project Manager, (PM) to oversee the implementation of the CHM. His role was to do develop a scope of works (SOW), do all the plans, drawings, site layout, Local Government approvals and to put the job out to tender to building companies. 

I have been allocated a specific NDIA person to monitor the progress of the application and so far, she has been outstanding. 

So, where are we now as of 12 May 2020?

The SOW went out from my PM and he only got one builder from the five reply with a quote. The quote didn’t have the ramps I need, or the opening up of access to the master bedroom. I have just finished a walk through with the builder and had to explain to him what I actually required. The quote is now null and void, as it wasn’t inclusive of the above.

I emailed the PM to ask why only one builder had quoted. He said it was because of the housing boom in Perth and that they obviously had a lot of work and weren’t taking on anymore. I can accept that. I understand that.

BUT…….if I am in my chair, my CHM is life or death. If there is a fire in the house, I can’t get out. I can’t get to the toilet and I can’t have a shower as is currently the case.

This is not a problem that is going away anytime soon. I need the work done, but there is no one to do it. What can I do, except wait?

Finally, my NDIS plan is self-managed and have complete control of all my NDIS funding. Nothing will be done in my home that I don’t want, and I will be strong in my self advocacy to make sure that I get what I need. 

Stay tuned for AT CHM Part Three. What does the One-Legged Sax Player do when he doesn’t get what he needs?

My Assistive Technology

by Melanie Hawkes – PDA WA Associate Director

Hi, my name is Melanie and I joined PDA as an Associate Director for WA earlier this year. It’s my second time on the board, having completed 2 terms many years ago. 

I thought I’d share with you what assistive technology I use regularly, and the names I’ve given them. Or more importantly, the men (and woman) I share my house with. I’m known as Gadget Girl, and you’ll soon see why! 

Assistance Dog – Upton (nickname is Buddy)

Not exactly AT, but my retired assistance dog Upton is a huge help for me at home. He does a lot of tasks, like picking up dropped items (including rubbish while out walking, even coins!); opening and closing doors (even the fridge, freezer and oven); pulling my shoes, socks, scarf and hat off; pushing me up by my elbow if I fall sideways; and putting things in the washing machine and bins and on the table or in the sink. I also feel safer with him in the house. As much trouble as he has caused me (he had to retire due to behavioural challenges and has several health issues), his skills are amazing and I would not be able to live alone with minimal visiting support without him.
Here is a video I made of all the things my last service dog Happy did: https://www.youtube.com/watch?v=eJ8TV_q3uxk. Upton’s skills are just as good, if not better than Happy’s were! 

HouseMate – Tom

While doing some research for environmental controls for a new house about 8 years ago, I came across a Bluetooth device called a HouseMate. It allows me to control my mobile phone without touching it, and is also an infra-red blaster. I can use my mobile (I have a Samsung S10) with my hand while sitting in my wheelchair, but at night I can’t. But now I have my phone mounted to the side of my bed and sleep with Tom. I can do everything on my phone, like send messages, make and receive calls, read my emails and ebooks and browse the internet. I only have to tap on the button on top of Tom to have full control (or you can plug a switch into him). It scans row and column for keyboard and has a mouse function too. It’s much slower than using my hand, but is invaluable for those sleepless nights or emergencies. And a bonus is that I can control all of my infra-red devices with Tom too! Like my stereo, fan, heater, TV, and my bed (I had TADWA modify my bed controller to work with Tom). It’s the best device I have, after my wheelchair. I don’t think I could actually sleep without Tom! And Tom, because when I was reading the manual, I kept seeing “The HouseMate devices” on the pages, and over time Thomas has gone to Tom.

Pet Tutor Pro – Pete 

Pete is a pet food or treat dispenser that I control with my phone through Bluetooth. It was the first thing I bought with my NDIS funds (I self manage my plan). You can fill it with any dried dog food, and I open the app on my phone, connect Pete and press Feed. I keep Pete on a chair near the mat at my back door, and use it when I get visitors, Upton has done something I want to reward him for, or to distract him from something, like my neighbour’s dog barking. It is so much quicker and easier than feeding treats by hand. It can run on batteries or plug into the power via usb. I like to be able to move it around, so have two power banks that I use with it. It is definitely Upton’s favourite device, and I’ve found him sitting on the mat waiting for his treat a few times! 

Pet Cube Bites 2 – Jill 

Jill is a wifi camera that dispenses dog treats! I just bought the new version from an old one I bought three years ago, to monitor Upton while I’m out. It automatically detects movement and sounds and records 10-second videos while I’m out (I activate that feature when I leave, and turn it off when I come home). It notifies me when sound is detected, and I can watch live and dispense treats from my phone. It has come in handy when Upton has had diarrhea during the night. He can open the door and get outside and do his business. Then I call him inside and he shuts the door so I give him a treat and can see him go back to bed. All on my phone without me getting out of bed! Oh and why the name Jill? Well my old one was Jack, because he was black – blackjack or Jack Black. And the new one is smaller, so Jill… And she has Alexa built in so I can now use my voice to dispense a treat (and got it on sale at 60% off)!

Philips Respironics CoughAssist E70 – Cam

Thanks to the NDIS for funding this last year. As the name suggests, it’s a cough assist machine (hence Cam). It has a tube that I put in my mouth (you can also attach a face mask) and it blows air into my lungs, then sucks it out of me again. It sounds awful, but feels good. I have low lung capacity and weak muscles so find it hard to cough. If I get a chest infection, I usually end up in hospital where I can get regular and intensive chest physio to help me cough up the phlegm. Cam should prevent that. My physio set up a daily preset, which enables me to take deep breaths and practise coughing. And another preset to cough stuff up (when I’m sick). Hopefully with daily use, I can improve my lung capacity and strengthen my cough muscles and prevent hospital stays. 

Samsung robovacuum – Sam 

I love my robovacuum! I don’t like the remote control that came with him (or her. It’s named after Samantha Jade or Sam Smith – Sam sung – of course!) but I taught the signals to Tom and now use my phone to control Sam. I only have a cleaner once a fortnight, and Upton is really hairy, so being able to vacuum my floors is important to me. I always use it like a remote-controlled car, following it around. It’s pretty fun, and my floors get vacuumed at the same time! 

Sicare Light II – Geri

Tom has superseded Geri, but I still use her (she has a female voice, so named her after Geri Halliwell) almost daily. She’s a voice activated remote control. She sits on a stand next to my bed (yes, I sleep with Tom and Geri!). I can control all the same devices that Tom does, plus a fancy home phone made by Technical Solutions Australia in Victoria. So I can dial numbers by name from my home phone, and answer calls by pressing a switch. It’s definitely old technology, as I got it well before Tom, but I still have a use for it. 

TicHome Mini – G-girl 

In preparation of Geri dying, I bought a Google Home Mini and some compatible wifi devices. I have 4 light globes in the rooms I use the most, a wifi double power point,  2 Genio Smart IR devices and now a wifi voice controller for my bed! I can use my voice to turn them on or off, change the colours or brightness of the lights, or use my phone as a remote control without Tom (handy for changing the channel of the TV). I also have an Anko video doorbell that I use to see who is out the front before opening my electric door. I call her G-girl when talking about her, as if you say Google she starts listening to you! She doesn’t always get the right command, but makes me laugh with her responses sometimes. 

IOGear cordless keyboard with trackball – Alicia or Ali 

At work I have a cordless keyboard with a built-in trackball that I love. So when lockdown started due to Covid-19 in 2020, I brought it home to use. I loved it so much that I didn’t want to take it back to the office! So I bought myself one for home. It’s compact enough to fit on my tray, the keys are easy to press and I have full mouse control too. And it’s cordless, so I can leave my desk without having to put it on the desk each time. And I named her after Alicia Keys, of course!

Edge 2.0 power wheelchair – ???

I haven’t actually named my wheelchair. It gets the most use of all my AT. It is my second chair with 6 wheels. I don’t think I’ll ever go back to 4 wheels as I do love how easily it turns. But not when people trip over the back wheels…  I have tilt, recline, elevation and legs up, but my favourite part of my chair is my USB port. It enables me to charge my mobile phone from my chair, and I also have an electric hand warmer for cold days! Please suggest a name for my chair. It’s purple, if that helps? 

As for more gadgets in the future, I’m thinking of getting a heated throw rug for my bed (that I can plug into a wifi plug and turn it on and off with my voice) and I’d love some way of washing my hands independently. I can’t rub my hands together so hand gel is not a solution. There’s nothing worse than being hungry and getting yourself a snack, knowing you’ve had dog hair, treats and slobber all over your hands! It’s a good way of increasing my immune system though. 

Elle Steele’s successful presentation in PDA’s 2021 Webinar Series – now available on our YouTube channel

If you missed last Thursday’s first webinar in PDA’s 2021 Series, Elle Steele’s “10 Things you need to know to set up your own business in Australia and be successful”, you can now view it by going to the PDA YouTube channel.

Join PDA’s Elle Steele as she guides you through her own personal experiences and the valuable tools that she’s gained in her establishing and running a number of successful businesses.

This could be your first move towards your dream of financial independence in setting up your own business.

10 Things you need to do to set up your own business in Australia and be successful, including:

* What’s your reason for starting a business – your BIG why?

* Understanding what imposter syndrome is and how to work through it.

* Why systems are your best friend in any business.

* Why building a solid foundation at the start will set you up for success.

* Why you need to charge for your services (even at the start).

* Self-care practices for the new business owner.

Don’t forget to subscribe whilst you’re there.

International Women’s Day and an Inclusive World

Written by Talia Spooner-Stewart

On this International Women’s day, not only do we celebrate women’s achievement and raise awareness, but specifically in 2021 we are challenged to take action for equality. International Women’s Day (IWD) is being celebrated on March 8th 2021 with the theme  #ChooseToChallenge. 

I am a proud physically disabled female, and I choose to challenge gender bias and inequality. What do you choose to challenge this year?

Many that know me will know my motto in life is don’t judge me by my disability but give me an opportunity to show you my ability. I think same could be said should we switch the word disability with gender. Don’t judge me for being a female, but give me an opportunity to show you my ability. Either of these phrases are relevant due to gender bias and inequality that women and people with a disability fight for every day.

IWD is a day that celebrates women’s achievements and increasing visibility while calling out inequality. This day is celebrated every year similar to International Day of People with Disability (IDofPWD)where we celebrate people with a disabilities achievements and increased visibility while calling out inequality of those with a disability. I am a firm believer that both of these days deserve separate celebration where it provides again an opportunity to call out inequality globally and show that it still exists all over the word. 

What would happen if we removed gender or disability from part of the equation? Could we ever get to a point where not only women, but those with a disability are included in all places where decisions are being made, not just being made for us? With continued unity, strong voices to stand for equality,  it is not impossible.

We will continue to reflect and celebrate these days internationally for many years to come as we are nowhere near a society that fully sees past gender, disability, race and or religion. I am happy to believe, because of the celebration of IWD & IDofPWD we see the world starting to move forward and becoming more inclusive and equal. We certainly are not there yet however we are starting to see pay equality in most areas, more inclusive workplaces for people to thrive in, celebration of women alongside men in all areas and positively the list goes on. 

Individually we can choose to challenge and call out bias and inequality. Individually we can all choose to seek out and celebrate individuals achievements. Collectively, we can all help create an inclusive world.

Proudly introducing PDA’s new Director for Victoria – Tim Harte

It is with great pleasure that we announce Tim Harte as PDA’s new VIC Director.

Tim’s lived experience as an NDIS (National Disability Insurance Scheme) participant, disability pensioner and rural young person drives his commitment to empowering the voice and agency of people with disabilities.

Tim has tertiary qualifications in performing arts and science and has a background in disability, social & environmental justice activism and currently holds roles in Landcare, Australian Youth Climate Coalition, and the Deakin University Environmental Justice Club.

Tim is a Board Member of the Youth Affairs Council Victoria (YACVic), the peak body representing young people and the youth sector in Victoria, and is a member of the YACVic Youth Mental Health working group and the Commonwealth Children and Youth Disability Network.

Tim strongly supports the human rights-based model of disability and advocates for equitable access to services and meaningful participation and inclusion of people with disabilities in society.

Please join us in welcoming Tim to the PDA Board.

We look forward to working with Tim and capitalising on his experiences, energy and commitment to driving positive change in Australia’s disability landscape.

PDA announces the first webinar in its 2021 Membership Series and you’re invited.

In supporting the disability community, PDA recognises and celebrates the potential value that self-employment offers in helping people with disability overcome barriers to work.

Research has revealed that “*people with disability are 40 per cent more likely to be self-employed than their able-bodied counterparts”.

If you’re a PDA Member and you’ve been thinking about starting your own business, have a business idea, want help in making your entrepreneurial move or simply want to learn about setting up a business, PDA’s first Webinar for 2021 may inspire you to take the first step towards financial independence.

Elle Steele is a successful entrepreneur, business owner, former Paralympian, Model, Optimist, Mentor and Motivation Queen.

As Presenter, she will provide the framework to setting up your own business and taking control of your employment options and your financial future.

This EXCITING FREE WEBINAR will be run on Thursday 25th March at 6pm AEST and you can register by clicking on the button below:

We look forward to seeing you there.

*https://probonoaustralia.com.au/news/2020/06/people-with-disability-turn-to-entrepreneurship/

PDA Youth Alliance is now PDA Youth Network

PDA’s membership initiative for 18-30 year olds has rebranded and will now be known as PDA Youth Network. 

In line with this our online socials have also been renamed and will now be called “Hangouts” and will run monthly on the third Thursday of each month.

This decision was made following feedback and discussion from members and the Committee.

We believe that these new names positively reflect the importance and need for us to have our own community that understands our needs and wants.

With your help, we want to build up PDA Youth Network and make it truly representative of you, our fellow members.



Don’t forget to register for this Thursday’s PDA Youth Network’s first Hangout for 2021.

It’s sure to be a lot of fun and a great chance to catch up with friends, make new friends, get social and have fun.

You can register at:

https://us02web.zoom.us/meeting/register/tZMrc-GqrDwpHdWVcSOD2mVq4XbwP9P2ZOv4

7pm Sydney/Canberra/Melbourne/Hobart
6:30pm Adelaide
6pm Brisbane
5:30pm Darwin
4pm Perth

Hope you can join us.



We also encourage you all to get involved with the running of our Youth Network and helping us to make it as big, relevant and successful as possible.

If you would like to play a role (big or small) or have a suggestion or idea, please get in touch with us either via our socials or by emailing promotion@pda.org.au.

We look forward to working with you to make PDA Youth Network a community that gets and supports young Australian adults living with physical disability.

💕 Kathryn, Jonathan and Nick

PDA Youth Network

From Youth Network Committee Members – Kathryn, Jonathan and Nick

PDA’s 18-30 year old initiative has rebranded and will now be known as PDA Youth Network.

This decision was made following feedback and discussion from members and the Committee.

We believe that this new name positively reflects the importance and need for PDA’s younger members having their own community that understands the needs and wants of young Australian adults living with physical disability.

With your help, we want to build up PDA Youth Network and make it truly representative of you, our fellow members.

So we ask our 18-30 year old members to get on board and help. Whether this means joining one of our regular Zoom sessions (now every third Thursday of the month – see below*), getting involved on our committee, sharing your ideas, posting on our Facebook group page or inviting your friends to join our Youth Network.

Our *Zoom sessions will now be known as “Hangouts” and will run every third Thursday of the month at 7pm AEDT. Our next Hangout will be on Thursday 18th February and you can register at:

https://us02web.zoom.us/meeting/register/tZMrc-GqrDwpHdWVcSOD2mVq4XbwP9P2ZOv4

Catch up with friends. Make new friends. Get social. Have fun.

7pm Sydney/Canberra/Melbourne/Hobart
6:30pm Adelaide
6pm Brisbane
5:30pm Darwin
4pm Perth

Wherever you want to be involved, we welcome you to play a part in making the Youth Network as strong, relevant, fun and worthwhile as possible.

Send us an email at promotion@pda.org.au or a DM.

We look forward to working with you.

Kathryn, Jonathan and Nick

Reflect, Respect, Celebrate

Written by Liz Reid AM

Happy 2021! It has certainly started with a bang. I would say many are more than happy to say goodbye to 2020. 

Some great things did however come out of 2020 for PDA with:

  • * the establishment of the Youth Alliance for young people with a physical disability aged 18-30 years to be the voice of young people
    our membership increasing significantly
  • * our social media presence growing to exceed our expectations
  • * the appointment of PDA’s Inaugural Ambassador, Dr Dinesh Palipana OAM
  • * establishing regular online social hours for members to connect during COVID-19
  • * and the PDA Self-Management project’s how-to website – to be launched soon. 
  • * PDA making submissions to many government consultations
  • * our reaching out to members to identify gaps, facilitate solutions and provided advocacy for members individually and systemically to ensure their human rights were being supported and protected. 

I would especially like to acknowledge the skills and talents of outgoing Director for Victoria, Elle Steele, and Associate Director for Western Australia, Matthew Lee, for their fabulous contributions and commitment to afford the rights and freedoms of people with a physical disability. Thank you both for all you have done! 

A big welcome to Tammy Milne, Associate Director for Tasmania, and Melanie Hawkes, Associate Director for Western Australia. We are thrilled that you have joined the PDA Board and look forward to a productive year ahead!
Thank you to also to our members who attended our AGM at the end of 2020. It meant and means a great deal.

As we start to think about PDA’s work plan for our members, valued partners/stakeholders and what is important to you in 2021, we need to hear your thoughts, issues, and priorities. I encourage you to email Simon, PDA Manager @ Manager@pda.org.au or Natasha, Promotions @ Promotions@pda.org.au . If you know of people with physical disabilities and their supporters who would find value in being a member of PDA, please share the link to our website for free membership https://www.pda.org.au/membership/ .

In 2021 we will continue to advocate for the many Australians with disability who are ineligible for the NDIS and the supports it provides. Therefore, it is extremely important to advocate for the new incarnation of the National Disability Strategy post-2020 that is robust, responsive, and effective as the Federal Government’s disability policy centrepiece – so that all Australians with disability can have their needs met.

Social Hour via Zoom will be returning with a new flavour on the first Monday of the Month and the Youth Alliance Social Hour will also continue to be run, but will be moved to a monthly slot on the third Thursday of every month. Stay tuned to our Facebook pages for more information.

Elle Steele in coming weeks will be hosting a webinar for our members about setting up and running a business. Please check our PDA socials for more information.

Reflect, Respect, Celebrate… these words have different meanings for so many people! As we approach Australia Day, we can reflect on our nation’s story knowing that it began more than 65,000 years ago. First Nations Australians are the foundation of our nation’s story and an important and empowering part of our shared history for the entire nation. It is important that we acknowledge our complete history, its impact on our first peoples and that we pay our respect to all those who sacrificed and paved the road to where we are today.

Australia Day is when we can all come together, acknowledging everyone’s personal journey, paying tribute to our diversity and celebrating us and the great country that we live in. It is important that in doing so we also continue to promote reconciliation and multiculturalism. Together celebrating our progress as a vibrant, united and progressive society – not just this day but every day.

The countdown is on for the Australian of the Year Awards. Congratulations to all the worthy 2021 nominees from all States and Territories. The Awards will be broadcast live on January 25 7:30pm (AEDT), 6:00pm (ACST); 7:00pm (ACDT) & 4:30pm (AWST) on ABC TV and iView. 

Starting in 1960, the Australian of the Year Awards has four categories; Australian of the Year, Senior Australian of the Year, Young Australian of the Year and Local Hero – each recognising outstanding achievements and contributions to our nation. 

A big shout out for PDA’s Ambassador, Dr Dinesh Palipana OAM, Advocate for Doctors with Disabilities and QLD Australian of the Year 2021. Our thoughts and well wishes are with you and your family at the awards. PDA is incredibly honoured and privileged that you are our Ambassador amongst your incredible support to many causes. To be a nominee and finalist is a huge accolade!

I would like to finally add a thanks to our part-time team made up of Simon, Trish and Natasha who are continually coming up with creative ways to support PDA and our members, putting in more hours than we are funded for in many instances!! Thanks also to all the Directors and Associate Directors who volunteer their time and passion for an equitable Australia!!

As always take care & keep safe.

Liz

Welcome to PDA’s new TAS Associate Director – Tammy Milne

Tammy Milne is another recent and valuable addition to the PDA Board.

She lives on the North West Coast of Tasmania.

Living with Arthrogrophosis Multiplex Congenita, she brings lived experience of disability and a strong passion for disability and human rights to the PDA Team.

Having been with the Department of Education Tasmania for 32 years she has many strings to her bow – working as teacher aide, educational interpreter for the Deaf,  Intern Teacher and Librarian. 

Recently resigned, she looks forward to her work with PDA and continuing to be a “fierce warrior” in standing up for and supporting the disabled community.

Welcome to the PDA Team Tammy!

Introducing PDA’s new WA Associate Director – Melanie Hawkes

PDA is proud to welcome Melanie Hawkes to the role of Associate Director for Western Australia.

Melanie is a wonderful addition to the PDA Team, with extensive experience in the disability sector and with a professional background working in media and corporate communications.

She is also fluent in Japanese, enjoys socialising with friends and family, attending concerts and events and spending time with her much-loved, retired assistance dog.

It’s a pleasure and honour to have you involved on the PDA Board Melanie. Welcome!

PDA President Liz Reid is Pro Bono Australia’s “Changemaker of the Week”

Maggie Coggan from Pro Bono Australia has written a great article about PDA President Liz Reid.

It’s an insightful read about Liz, her story around who she really is and the motivation behind her dedication to ensuring social justice and that everyone is seen and respected.

https://probonoaustralia.com.au/news/2021/01/fighting-for-fair/

Setting boundaries for the holiday season.

Written by Elle Steele – PDA VIC Director

Boundaries.

It’s a bit of a buzzword isn’t it? 

I remember hearing it from my psych. She said to me “Elle, you have no boundaries. This is why you feel the way you do. Let’s fix that.”

Even though I’d been an athlete for so long, boundaries had never really played a huge part in the lead-up and recovery from training or any major event, or so I thought. If I think back now, I probably was doing my fair share of it, but it all related back to swimming so it was never a holistic approach.

During the 13 years I was on the Australian team, I had colds, my nose was always running, I had dry skin and aches all over from pushing my body to the limit. But now, I’ve learnt to be a LOT more balanced in my ‘pushing’ with daily self-care practices in place so that I can at the very least get up the next day. For me, self-care and boundaries go hand in hand. I want to share some self-care tips with you for the end of year holidays. 

  1. Learn to say ‘no’. 
    Yep, I’m starting off with a big f..ing NO. You know why? You are worth more than doing the things you hate. You are worth more than hanging out with people who are toxic. And you are worth more than watching negative shows or anything that makes you feel anxious. The same goes for seeing people over the holiday period that you don’t feel so great around or doing things that make you feel uncomfortable. Just because you’ve always done something, doesn’t mean you have to keep doing it. 

  2. Don’t count your calories.
    Yep, I said it. Do.not.weigh.your.food.you.are.not.a.race.horse. Our bodies change all the time. Don’t hold yourself to something that was yesterday or could be in your future. Enjoy you now. Stop trying to be something else or have a different number on the scales. You’re doing amazing. I used to be 53kgs and I was never happy, I was sick all the time and my mindset was terrible. Now, I know I’m carrying some weight, but my insides, mind, and body are getting healthier every day and the most important thing is I love who I am, in the now, all of it. No amount of food weighing will make up for any lack of self-acceptance. Enjoy the food over the holidays and love yourself enough to eat what makes you feel good

  3. How you finish you year of work isn’t how it’s always going to be. Well, 2020 was fun wasn’t it? Remember, if you finished the year slightly ‘less than’ you’d hoped doesn’t mean squat. You’re on an adventure. You haven’t reached your final destination yet. Think 2021 is for creating connections. Creating content. Creating a life that you don’t need a holiday from. This includes having really strong boundaries for yourself in your life all year round. My advice to you is “always follow joy, in all that you do.”

  4. Self-care looks different to everyone.
    There is no right or wrong way to self-care or set boundaries. I was once told that resting my body and watching a movie wasn’t the ‘right’ way to do self-care. I’m sorry, who said it wasn’t? The self-care police? P.S If you’re still hanging with the self-care police, please refer to point 1).

  5. Take time out from all the noise at least once a day.
    Meditation comes in different forms, so you do “you”. Whatever feels best for you and allows you to switch off and breathe, this is the best way for you to meditate. This may evolve over time, but if it doesn’t then that’s also ok. Some days I meditate to silence. Some days I draw. Some nights I light candles, pump ancient drumming music and dance. Some days I swim. Some days I chant. Whatever makes you feel good is what’s best.

Now, go and do what makes you feel good over the holidays.  

Announcing PDA’s newly elected Executive Board

Following PDA’s successful and well attended AGM, elections were held for the Executive Board that saw the existing team returned to continue their great work.

Liz Reid * President
Talia Spooner-Stewart * Vice-President
Andrew Fairbairn * Vice-President
Jonathan Shar * Treasurer

Congratulations!

We would also like to thank all of our Members who joined us at last Saturday’s AGM. It was wonderful to see so many of you attend and we look forward to your involvement in the next 12 months and beyond.

2020 AGM – Saturday 5th December 2020

Tomorrow PDA will be holding its Annual General Meeting via Zoom and invites all its members to be involved.

To attend you will need to register in advance by going to:

https://us02web.zoom.us/meeting/register/tZEvdeqgqj8vHN2KTYutqbP2wIJ8oPNvfNXe

The PDA Board and Team would love you to join them to hear what they’ve been up to, what PDA has planned for the future and just to be part of the conversation.

3:30pm Sydney/Melbourne/Hobart/Canberra

3pm Adelaide

2:30pm Brisbane 

2pm Darwin

Congratulations to PDA’s Ambassador, Dr Dinesh Palipana OAM, on being named as QLD Australian of the Year 2021

At a ceremony in Brisbane earlier this month, QLD Premier Annastacia Palaszczuk announced that Dinesh had been named as QLD Australian of the Year 2021.

“Dr Dinesh Palipana knows no barriers,” the Premier said. “He is a truly inspiring person and a much-deserved recipient of the Queensland Australian of the Year Award. Dr Palipana was the first quadriplegic medical graduate and medical intern in Queensland and was also recently admitted as a lawyer. As co-founder of Doctors with Disabilities Australia, he helped create national policies for inclusivity in medical education and employment. He speaks, writes and advocates for the equitable treatment of people with a disability, and he has contributed significantly to the advancement of treating spinal cord injuries and restoring functions for people with paralysis. I warmly congratulate Dr Palipana as the Queensland Australian of the Year.”

We wish Dinesh all the best in the national Australia Day Awards in January.

Exploring Accessible Transport with physical disability and using an electric wheelchair

by Sharon Boyce – PDA QLD Director

Sharon Boyce is PDA’s QLD Director and well known and respected for her work in educating the public about disability inclusivity and awareness.

This video is about accessible transport and the way in which her much loved car has opened up her community, her options, her opportunities and her world.

To view please click below:

Creating a more connected Physical Disability community through the COVID-19 Pandemic

Written by Jonathan Shar

If we are to take anything positive out of the whole COVID-19 situation, I believe that we have become a more cohesive and united community through being brought together by platforms such as Zoom.

Whether through being involved in  PDA’s fun fortnightly Social Hours (see below for registration link) or doing therapies via Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

As someone who at times has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

In saying that, my main concern is how can we maintain this into the future. Will and should technology play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively. Whether you’re a service provider, part of a peak body or community group, we need to work together – regardless of how or who you’re funded by. 

This will enable better outcomes across the board for the disability community, the members and the very people we represent, because without them we are nothing. “Nothing about us without us” may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is being shown to be true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action. It’s important for us to channel our frustrations into something positive, instead of stoking divisions. Let’s make this an opportunity to strengthen disability rights and encourage politicians to truly put disability on their agendas – not for votes or popularity, but to truly bring about tangible reform.

If you too feel frustrated and passionate about this issue, I encourage you to use social media to start a conversation, talk/write to government agencies and leaders of disability services. Do not beome demoralised, by negative answers or lack of response. Simply continue to knock on doors and keep the conversation going. 

Together we are louder.

Join PDA, join one of our Social Hours, become part of the conversation and let’s work towards improving the lives of all Australians living with disability.

To join one of PDA’s fortnightly Zoom sessions (held on Mondays), please register at:

https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo?fbclid=IwAR37vPFdtHijzzInqwjHDE8hWoC1DuIq5D2yYrSSR9fEzhXf1xxidmi7iZ8

Bullying in our public health system

Author’s name withheld on request

If someone was to ask me about my understanding of bullying, a few weeks ago I would have reflected on the time I bullied our workshop apprentice whilst the older men around us cheered and berated the poor guy.  Thank you for refusing to put up with my misguided anger Scooter, you were stronger than me at that time.

I may have also reflected on my children’s experience halfway through high school.  They were ostracised from their group of friends due to the boredom of a couple of kids and the belief of their parents that, if my children put up with it, it would resolve itself.

The last place I expected to be bullied though was in an Australian public hospital.

I best include a little information about myself so you can better understand the situation I have found myself in. I am in my early 40s and have been a high-level quadriplegic for the past 20 years. I have a severe pressure wound that has had me restricted to bed for the last eight months or so, 24/7. The chronic pain I have suffered since I got my disability has proven to be one of the biggest hurdles I’ve had to overcome. For the past eight months I have been experiencing bouts of a condition known as autonomic hyper dysreflexia – a potentially life-threatening medical emergency suffered by a small amount of spinal-cord injured people with symptoms that include high blood pressure, pounding headache, flushed face, sweating above the level of injury, goose flesh below the level of injury, nasal stuffiness, nausea, tachycardia and high blood pressure. I also had a soul crushing migraine that would make me wish that I was dead. 

One of the unfortunate facts about autonomic hyper dysreflexia is that it is misunderstood and practitioners do not typically have any knowledge of how to deal with it. For example, every time I was admitted into hospital I had five ward doctors standing around me uncertain as to what to do to relieve the situation. 

It had been decided by my nursing network and a number of health professionals who had been reviewing my wound progression in my home, that I must attend a hospital emergency department due to the high possibility that I may suffer an uncontrollable attack of this condition and die. I had my support worker pack a bag for me and I called an ambulance during the early evening.

As I was waiting to be processed and assigned to an appropriate ward so that I could receive appropriate treatment from a physician with some expertise in my illness, I was approach by an irate doctor swinging her arms around in an aggressive manner, trying her best to intimidate me and make me go home. 

She made it quite clear that I would not be getting any treatment on my wound through the hospital. She continued by asking me what I expected the hospital to do about my situation, to which I replied “I don’t know what you can do for me, I just know something needs to be done because I am not safe at home and I believe the hospital is the only place for me to be where an appropriate plan of action could be made.”

Unfortunately, as I have learnt over a 20 year period dealing with the public hospital system, this sort of response is not uncommon. The chronic health concerns of people with disability are deemed too hard to deal with and this is somehow my fault.

At that point I had to do what is the only course of action available to resist this form of bullying and intimidation: stand my ground. I refused to just go home and asserted my right to receive treatment for a life-threatening injury which eventually resulted in my being admitted to have my condition stabilised and assessed. I still have a way to go and I anticipate further battles to get my needs met.

I understand that hospital emergency departments are stressful places and that the Coronavirus pandemic has only increased the pressure felt by the people who work there. But this does not justify the mistreatment of people with needs that are different to the patients they typically deal with and we must not accept it.

Creating a more connected Physical Disability community through the COVID-19 Pandemic

Written by Jonathan Shar – PDA Treasurer/NSW Director

I don’t know about you but if we are to take anything positive out of the whole COVID-19 situation, it is through adversity I feel like using platforms like Zoom, we have become a more cohesive and united community.

Whether it be our PDA Social Hours (register at https://us02web.zoom.us/meeting/register/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8tAo) or doing therapies using Telehealth, we should be proud of the sense of belonging and community we are creating and hope to maintain when life returns to normal (hopefully sooner than we think).

For me as someone who from time to time has struggled with social isolation and longed to be a part of a community, when I do login to a Zoom chat or YouTube live stream I feel like I’ve almost come home because being around people that understand the challenges and triumphs of disability life is healing. 

I guess in saying that, my main concern is how can we maintain this into the future. Will and should  technology  play a bigger role in how we include and embrace people with physical disabilities?

One thing I will be pushing for is for all organisations who work in the disability space to work more collaboratively, I personally don”t care whether you’re a peak body, service provider or community group, we need to work together regardless of how or who funds us. 

All that really drives us is better outcomes for the members and people we represent because without them we are nothing. Nothing about us without us may be one of the most overused quotes in the disability rights movement but during these times I feel as though it has taken on a new meaning.

In the era of #BlackLivesMatter, #MeToo and the violence, abuse and neglect being uncovered by the Disability Royal Commission, one could assume the collective trauma from all three would foster divisions, however the opposite is true.

It is a shame that it took the appalling abuse and callous neglect of Ann-Marie Smith to unite our community in a call to action, the point I am trying to make is let’s channel all of this frustration into something positive, instead of stoking divisions, let’s make this an opportunity to strengthen disability rights and to politicians with a disability, we want more than talk, we want action and tangible reform that will actually be implemented.

If you feel as frustrated and passionate about this issue, use social media to start a conversation, talk to leaders of disability services and government agencies – but if you get a negative answer don’t get demoralised.

At PDA we are here for you, remember to join us for Social Hour and even become a member.

The One-Legged Sax Player and his Journey to NDIS Home Modifications

Written by Andrew Fairbairn – PDA Vice-President/WA Director

Once upon a time there was a guy who was a left below knee amputee. 

In January 2019, he applied for, and was given access to the NDIS as a participant. He was very excited about this because he and others had lobbied hard for this Scheme.

In his first plan, built by an NDIA Planner who knew nothing about amputees,  he was given ample Capital Support Funding to provide a complete rebuild of his everyday prosthesis,  a brand new, complete fully water proof prosthesis and a very expensive custom wheelchair, complete with a set of off-road wheels and a free wheel device for him to use when he goes camping, which is one of his big goals.

He was given Capacity Building funds to employ an OT to do a full Functional Capacity Assessment. He went through this process and it was identified he needed to get a wheelchair and the new prosthetic limbs, among other things AT.

It was identified that in the next plan Home Modifications Capital Support funding should be asked for and granted as reasonable and necessary. The OT did all that was required of her with regards to documentation, photos and justifications for the next plan.

To say he was happy, is an understatement. He is working in the disability industry, is a passionate advocate and activist and a leader in the Amputee community. He knows the NDIS is very good for his community and continues, despite its flaws and failings, to promote it and extol its virtues.

In January 2020 he had a plan review asking for the Home Modification process to be started and asked for funds to start the process as was identified in the FCA completed in 2019.

The plan was sent to the Delegate for approval at the end of January 2020. The plan was approved and arrived in his My Gov account on the 19 January 2020 and he sent it straight back for S100 review due to the omission of the asked for Home Modification Capital Supports.

In April 2020 he received an outcome of the S100 review stating, amongst other things,  “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support represents value for money” and “I have assessed this support against each of the criteria in section 34 of the NDIS Act, and I am not satisfied that your request is reasonable and necessary.” This is his personal favourite,” “I am not satisfied that there is sufficient evidence at this time to make a determination as to whether the requested support is effective and beneficial.” To date, he is still fighting with the Agency to get the Home Modifications completed.

The One-Legged Sax Player is a nice guy. He works hard, He is a husband, a father, a colleague, a friend, a confidant, a board member, a speaker, a teacher, an advocate and an activist. He is well regarded in his community and works his butt off for them with little or no reward.

He has paid taxes since he was 15 years old and has served his country in the Royal Australian Navy, so it begs the question, on what planet does a ramp covering 4 steps and making accessing his house in a wheelchair, not reasonable, necessary, effective or beneficial?

Vale Sue Salthouse

It is with deep sadness that we share that Ms Sue Salthouse has passed away.

Known, loved and respected for her lifelong dedication as a disability advocate and beautiful soul, Sue’s passion, generosity and zest for life will be remembered and treasured.

Sue’s accolades included:

  • Member of the Independent Advisory Council (Council) to the National Disability Insurance Scheme (NDIS) from 2017-2020.
  • Recognition as a prominent member of the Canberra community.
  • Recipient of the 2020 ACT Senior Australian of the Year – for her work advocating for women with disabilities.
  • Canberra Citizen of the Year in 2015.
  • ACT Senior Woman of the Year in 2014.
  • Tireless social justice/human rights worker – focusing on the issues of gender and disability discrimination (particularly in regards to women with disability).
  • Chair of Women with Disabilities ACT.
  • Director of Women in Adult and Vocational Education (WAVE) and Rights & Inclusion Australia.
  • Chair of Advance Personnel (Disability Employment Service).
  • ACT representative on the COAG Advisory Panel (2015-16) working to reduce violence against women and their children.
  • Member of the governing Council of the University of Canberra.
  • Immediate past Chair of the ACT Disability Reference Group.
  • Sharing her passion for improved access to assistive technology supports. Through providing significant advice on the topic, Sue strove to help people with disability live their best life possible.
  • A loved and valued Member of PDA.

Liz Reid, PDA President, paid tribute by saying “Sue was a total icon and mentor for women with disability. She was passionate, strong and had the most amazing way with words. An eloquence that captured the beauty and magic of life, whilst insisting that those living with disability were heard and included in the conversation. She will be forever missed, but never forgotten.”

We send our sincerest condolences to her family and friends.

RIP Sue. 💖

PDA continues to be a recognised and strong voice for Australians living with physical disability

Sharon Boyce is a hardworking disability advocate and PDA Board Member, who has been appointed to the NDIS Independent Advisory Council (IAC).

PDA President Liz Reid will continue to provide representation for those living with physical disability, having been reappointed to her role with the IAC.

Formed to represent the voice of NDIS participants, the IAC advises the Board of the National Disability Insurance Agency on the most important issues affecting participants, carers and families. 

Comprised of 13 members the IAC represents a wide range of disability and advocacy sectors, bringing their own lived experience or expertise of disability.

Congratulations Ladies.

We can all be assured that your involvement within the IAC will ensure that PDA, its Members and all Australians living with physical disability (and all other disabilities) will continue to have a strong, informed and true voice.

For more information on the IAC go to https://www.ndis-iac.com.au

But, I don’t see you as disabled.

Written by Elle Steele – PDA Director (VIC)

I was a little unsure of what to write for this piece, I haven’t been working in the disability industry consistently for a long time. I’ve had the odd job and written some Disability Action Plans in my day, and of course, I have a physical disability so there’s that.

But yesterday, as I’m still grappling with the topic to write about, something really interesting happened on my personal Facebook page. For some context, I work as a business coach for mainly people identifying as women (it’s just turned out that way) in the spiritual and wellness industry. Yesterday (June 21) was a New Moon, which is the first moon of a new moon cycle and in the space that I mainly live my life in. This is when you set your intentions and goals for the month.

So, I posted this on my Facebook profile; ‘Maybe one of your new moon intentions could be to diversify your feed, the people you work with, your podcast guests, your friends’ list to include people with disabilities too?’ 

The post spent the day being shared and liked by various friends and people that work in my industry until about 6pm when I received this comment, “I never saw you with a disability. Never thought of you as different. You were just Elle. And Elle was you. It feels weird for you to use that word about yourself. Also, I miss working with you, however briefly it was❤️

Now, this is a genuine comment, this person is lovely and doesn’t see anything wrong with what has been written here and, in the past, I would have glossed over it and got on with my day. But, as I’ve grown more into myself and learnt to embrace all parts of me, I now realise how this way of looking at disability can be a problem and why we as a cohort continue in many ways to live a life of invisibility. 

Is it that people think that by ignoring the disability or the thing that makes them uncomfortable that they won’t have to acknowledge it? I for one want you to see it, get to know it and research disability, because I’m not your teacher, but you can be my ally. 

Our difference is what makes us unique and beautiful. It also gives us our power, teaching from a place of personal awareness and self-acceptance. 

The Importance of Disability Awareness Training across all sectors and all areas of our Society

written by Sharon Boyce – PDA Director (QLD)

My name is Sharon Boyce and I am on the Board of Physical Disability Australia. I am also an author, educator and disability advocate – wearing many different hats and performing many different roles that I never imagined I would be a part of. I am the Advisor to the Queensland Disability Minister and Chair of the Queensland Disability Advisory Council. I am also a part time education academic at University of Southern Queensland (USQ) completing my PhD and a consultant in disability awareness.

I was diagnosed with Juvenile Chronic Arthritis at 11 and have used an electric wheelchair since I was 21. When I was diagnosed I never imagined the impact and change this would bring to my life. I went from a child who never stayed still and who was on every sporting team possible to a very different world. Limited in some ways and expanded in others, but as a person living a very changed life. I had no idea about disability and did not want to acknowledge or be part of anything that was different.

That has certainly changed over time. Through my journey I have explored and discovered many areas. I have become more involved within the disability community, working across many areas to promote a true understanding of disability and diversity. I explored my hobbies of art and music and these became new passions for me, giving me a creative outlet that I had not realised was possible. I have had the chance to exhibit, sell my paintings and also just paint for fun. Music and singing has also been central to my world. I have always felt very lucky that my mum had encouraged this – taking me to music lessons and putting up with my practice since I was four years old. These skills have proved useful in my life especially my work in radio, where I got to  interview singers and review movies for over ten years.

I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education and experience, and through sharing my story and the stories of others, that barriers can be broken down and real understanding can be achieved. This is real disability awareness.

As time progressed I felt there needed to be more information and understanding about what disability is and how it impacts on individuals in our community. I developed a “Discovering Disability and Diversity” hands-on, experiential awareness programme which enables students, teachers, carers, doctors, health workers and the general public to experience and explore a wide range of disabilities. You can read more about this at www.discoveringdisability.com.au.

PhD Research into dyslexia and educational inclusion and running lectures at USQ have also given me the opportunity to enable others to explore and understand a little more about physical and hidden disabilities, dyslexia and creating inclusive curriculum, pedagogy and workplace support. Through educating others to understand that not all disabilities are immediately obvious, I believe that society will be discouraged from making assumptions and drawing inaccurate conclusions.

I have written a number of books, recently launching “Discovering Dyslexia” with the Queensland Disability and Education ministers. I have also designed an educational resource kit called “Another Day in the life of Sharon Boyce”,written a children’s book called “Discovery at Paradise Island” which is now part of the NSW School Syllabus.

These experiences and opportunities have brought a richness to my life. I am committed to creating a world where real lived inclusion is possible. I believe that through real hands-on education, experience and through telling my story and the stories of others, barriers can be broken down and real understanding can be achieved. Enabling better understanding and empathy that initiates conversation about disability access and inclusion, ultimately working to breakdown barriers.

Born with no disability, I never would have believed this would be my life now and that creating an understanding of disability and sharing my story would be central to who I am. My own acceptance and acknowledgement was key to this.

I believe that together we can create inclusive communities through enabling us all to live our best lives. 

Liz Reid, PDA’s President, has been awarded recognition with a Member of the Order of Australia (AM) Medal for her service to people with disability, to youth and to social inclusion.

Congratulations to Liz Reid for her deserved recognition, having been awarded a Member of the Order of Australia (AM) Medal today.

Liz’s outstanding commitment and contribution as an advocate for those with a limited voice (or often those without a voice), has been shown in her work to ensure that that all Australians are afforded the same rights and freedoms – regardless of ability, circumstance or challenge.

Her contribution includes, but is not limited to, her involvement as PDA President, Chairperson of AFDO (Australian Federation of Disability Organisations), Executive Officer of YouthWorx NT, Northern Territory representative on the NDIA Independent Advisory Council, Community Representative for the City of Darwin, Access and Inclusion Advisory Council and Board Member of the Industry Skills Advisory Council NT.

So proud of our Liz and her incredible contributions.

Image result for emoji champagne

Damien Thomlinson

This year as part of our ANZAC Day tribute, we share the story of Damien Thomlinson – an Australian Defence Force Veteran and double amputee and PDA’s 2020 Face of ANZAC.

PDA gratefully acknowledges Damien for allowing us to share his story with you.

Damien Thomlinson may be a familiar face with a familiar story.


A proud Australian, husband, father, motivational speaker, brand Ambassador, accomplished sportsman, the first amputee contestant on popular TV show Survivor, best-selling author and Hollywood actor.


However, much of this page in his history book stems back to his time as a Commando in the Australian army.


Having served for a number of years on a number of deployments, it was whilst serving in Afghanistan that his life changed forever.


On a late-night patrol in April 2009, Damien’s unit drove over an improvised explosive device, planted by the Taliban. The force of the explosion resulted in catastrophic injuries that left him with facial injuries, both of his arms severely fractured and both legs being amputated. There were many times during the immediate treatment of his injuries, that his medical team were unsure as to whether or not he would survive. The fact that he wasn’t killed in the explosion or whilst hospitalised is still seen as something of a miracle.


The chapters which followed showed the true strength and determination of a man, who refused to give up, who refused to allow what had happened to lead him down a path of depression, despair or defeat.


Giving up was not an option for Damien. It is not in his nature.


Instead, he decided that the loss of his legs was simply another challenge for him to overcome.


Damien’s positive attitude and refusal to quit spurred him on, bringing many opportunities that have allowed him to inspire, motivate and resonate with many people.


He has since married, become a father, written a best-selling autobiography, become one of Australia’s most successful motivational speakers and been a cast member of the Academy Award winning movie Hacksaw Ridge.


Despite all these responsibilities, he is actively involved in many important causes that support other brave and selfless defence force members, now facing their own personal challenges.


Damien’s incredible journey upholds the belief that challenges can be overcome with determination and drive.


He is testimony that the ANZAC spirit is truly alive and well.

Lest we forget!

How my Life has Changed in the COVID 19 Pandemic

by Nina Crumpton – PDA Associate Director (NSW)

As someone living with Primary Progressive MS and Bronchiectasis, (lung disease), I am someone who could very well be classified as High Risk were I to contract this infection. This fact has caused me to consider what that could really mean for me over the course of the weeks and months to come.

I could die. That is the harsh reality, my reality. That thought alone could be enough to induce fear and paralyzing anxiety in me. I have read media reports that if it came down to a choice between my life and that of an able bodied person in ICU, I may draw the short straw and lose the lottery of life which is a terrifying prospect.

Knowing this, I have chosen to regulate my emotions and remain calm and rational and to employ logic not fear. I have chosen to plan and prepare as best I can for any eventuality that may arise. I have also chosen to only control the things I can and to let the rest go.

As the saying goes, “Stay Calm and Carry On!!

I am indeed fortunate in many ways. I have secure employment in a job I love and I am able to now work from home. I have a secure home and a good support system. I  have no personal/household debt which is very comforting in these challenging times.

The NDIS has allowed me to have the supports I need to live an ordinary life and I wouldn’t be who I am without that framework around me. It has given me the ability to work, study, access the community and travel. My life has opened up in so many amazing ways so when the pandemic hit, I made a conscious decision not to reduce supports but to modify the delivery of the supports in a way that would still support my mental and physical health.

I am now only leaving the house to exercise and for essential medical appointments really. I choose to minimise my risk of infection in this way and to be honest, I am really enjoying the quieter pace of life. I am reading books, taking my dogs on leisurely walks and napping every day. I have no hurry to rejoin the rat race of life and I am actively questioning if that is even necessary at all.

Is this a fundamental shift in the way we live or a temporary pause before we once again are infected with the disease of busyness?

Stay safe, wash your hands and be kind xx

Escaping but then living

Written by Kathryn Lyons, PDA Associate Director


Throughout our lives we all experience highs and lows. We can feel trapped in our minds, bodies and spaces. Sometimes we choose an alternate reality to escape from what is happening in the world around us. Having personally experienced this, let me share a part of my journey.

I was born with a progressive and degenerative disability that impacted on my life in multiple ways. Initially, I was able to walk and physically capable of many things, as puberty hit my body changed so drastically; I ended up in a wheelchair. Learning to live with the complexities caused by the physical side of my disability became a new challenge.

This was a major life changing moment for me. For example, 12 years ago I could figure skate. Two years later, my body deteriorated to a level where I became bedbound, unable to transfer or care for myself independently.

I couldn’t understand WHY this was happening to me. Why, I had such intense pain. I was confused. I quickly went from a happy teen who would smile and talk to people into someone who felt trapped. Not only within my body, but isolated within the four walls of my room.

My confidence had decreased. I didn’t know who to turn to. Feeling like my whole world had crumbled around me, I started developing depression and I needed to find a way to distract myself quickly.

So, I got a computer and started living in virtual worlds, by joining alternate universes. I would game with them from across the globe on mass multi-player online games, instead of physically being around people. This online existence meant I could do anything, and it opened doors within my mind. It started to simulate the feelings of walking, dancing, and even figure-skating again. I had no restrictions and it was amazing! I could travel anywhere and in any time. I was losing my sense of reality.

For 7 years, I lived in these new worlds thinking I was happy, only really emerging when it was necessary. Over a period of time I started to realise that this was not healthy. I had to come to terms with the way my body had changed. Needing to grow mentally, this altered my perspective and reshaped my attitude around disability. My first steps were to accept myself and the freedom I could gain from my wheelchair. To achieve this, I had to leave my virtual life behind, by coming out of the shadows I opened my arms and embraced everything, rediscovering the amazing world that I was so afraid of.

Over the past 3 years, as I have built up my confidence, I have also been learning how to be a disability advocate supporting diversity and inclusion. Developing communication skills around public speaking and networking, I have strengthened my connections and now I’m building my businesses.

Through my networks, I was introduced to a representative of Physical Disabilities Australia (PDA). Joining PDA, gave me opportunities to meet with other members, where I learnt about their stories.

With PDA, I’ve realized I’m not alone. Discovering I could still do so many things, like race, dance, shop, socialize, work and travel. I was preventing myself from having an incredible life. Now with the roll-out of the NDIS, I aim to expand this and live to the fullest.

Every person has their own unique story and although we go through different journeys, we have something in common.

If you want to read more blogs like this one or find out what PDA does, please check out this website, follow them on Facebook, Instagram, LinkedIn and Twitter.

Start to connect, as you will never know what you will find.

We need a new policy called the “NDIS” on Disability Inclusion

Written by Jonathan Shar, PDA Director

While the National Disability Insurance Scheme takes account of our care and support requirements, in my view the policy doesn’t go far enough to tackle the marginalisation and discrimination that people with disabilities face.

If cases like *Quaden Bayles has taught us nothing, Australia has a problem with our attitudes and perceptions of people with disabilities. In my life, I walk with an unusual and stare provoking gait. I have a speech impairment. Despite that I run my own business and sit on a board but the general public don’t see that side of me.

I share this not for your pity or condolences but for context. Like you I’ve faced adversity in my life. For me I can’t hide my disability, instead I celebrate my distinctive abilities. It is not the fact that I can’t run that is my disability but the taxi driver that refuses my fare because I am “unaccompanied”

There has been calls to integrate disability awareness into the school curriculum but we need to go much further because I don’t want to be trapped in a dichotomy between a welfare recipient and Paralympic champion, I want the tools to live an ordinary life without the social judgement of people who has no idea about disabilities.

For me, a ramp is a small part of what it means to be an accessible society. An accessible society would be one where I could say “This is me, disability is my identity”, it would be a society where children would be educated to ask first, stare never.

For this we need a shift in policy, we need to treat disability discrimination as something to be prevented by education not having to be referred to a complaint authority. Disability awareness in my view should be a component of study in high school PDHPE courses. Making disabilities part of normal life should be instilled from people from a young age.

On top of this we need campaigns focusing on everyday people with disabilities not just those with a public profile or cute kids who can illicit the most donations, a campaign not of inspiration porn but people that we can aspire to. We need more people like Nas Campanella being the public face which makes disability normal.

A good attitude may not erase a disability but it can make disability more included in our society.

* https://mobile.abc.net.au/news/2020-02-24/quaden-bayles-not-alone-disability-royal-commission-finds/11994872?pfmredir=sm

International Wheelchair Day

Written by Talia Spooner-Stewart, PDA Director

On this International Wheelchair Day, it provides us all an opportunity to celebrate the positive impact wheelchairs have on our lives.  A day not only for wheelchair users but also a day to recognise the millions who either provide accessibility to wheelchairs and for those who support and or care for wheelchair users themselves.

Did you know that only between 5-15% of people whose mobility depends on the use of wheelchairs has access to a suitable wheelchair? Not every wheelchair is the same and those with mobility limitations all have different reasons for their requirements. I never really gathered the impact of what that means until my new custom fit wheelchair was delivered.

I have been diagnosed with Multiple Sclerosis for over 20 years now, the progression of this disease has become more apparent over the last 10 years with my mobility the biggest affected. Once, I could mobilise with a walking stick and crutches and now, whenever I venture out of the house I use my wheelchair. As my mobility worsened my required specifications for my wheelchair increased.  From using an old stationary transfer wheel chair, to independently moving around in a manual wheelchair to now having a custom wheelchair to fit me with a smart drive attached for ease has been an incredible improvement to my life. It has provided so many opportunities I previously would not have had.

Previously I would have been limited or even excluded all together from activities either due to restricted or no accessibility at all.  Being able to use my wheelchair and the opportunity to use other specialised wheelchairs has provided me many opportunities that previously were not available. It has influenced my independence, choice, a sense of community and an increase in my self-confidence. These opportunities and choices have allowed me to undertake and enjoy tasks that previously I would have NEVER have done or seen. Provided an opportunity to do some amazing and life changing things.

These are photos of some amazing things that I have been able to do due to the access to suitable and specialised wheelchairs. From swimming in the ocean on a beach wheelchair, to getting up close and personal in Uluru with an off road wheelchair to volunteering at the Invictus games. None of these things unique experiences would be possible without a wheelchair, the people who support  me in a wheelchair or the accessibility implemented for wheelchairs.

Happy International Wheelchair Day.

.