Category: Uncategorised

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.

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.

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?

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. 💖

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

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. 

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. 

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.

Did you know that PDA currently runs 2 online social catch-ups to give its Members the opportunity to meet up, get to know each other, chat and have fun?

Monday Social Hours
Each and every Monday

6pm Brisbane/Sydney/Canberra/Melbourne/Hobart
5:30pm Adelaide/Darwin
4pm Perth
  It’s a fun hour. Pour yourself a wine or beer, make yourself a cup of tea or bring along some pre-dinner snacks if you want.
We’d love you to join us, get to meet fellow PDA Members, socialise, chat and escape COVID-19 isolation.

To register go to:
https://us02web.zoom.us/…/tZMvdeCvqT0iGNIHANOwSpCJDs6Yg_iN8…
Then you’ll receive an email with the link to click to join us at the scheduled Social Hour time.

We hope to see you there.

PDA Youth Alliance Link-Up
Each and every Wednesday for PDA Members aged 18 to 30 years

5pm Brisbane/Sydney/Canberra/Melbourne/Hobart
4:30pm Adelaide/Darwin
3pm Perth  
Want to get to know other young PDA Members, make friends and have a fun hour?
PDA’s Youth Alliance runs a weekly Link-Up session on Wednesdays and they’d love you to join them.

It’s a lot of fun. 
Pre-register at https://us02web.zoom.us/…/tZUlf-CtqTgvH9ZUNgRn5ZBIVjVSpUDAs….

The gang looks forward to seeing you there.

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!