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.”

www.tasmaniantimes.com/2021/12/what-price-inclusion/

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.

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 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”.

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 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.

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’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.

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! 

⚠️ 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