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Life as a hopping homo

Written by Paul Watson – PDA NT Director

My disability is a very visual one that without correct clothing can not be hidden.  For many years I was embarrassed, in fact so self conscious it would stop me from living a life like so many others.  

Being an emputee can put restrictions on many of the things you do in life, but my internal battle with self image in my late teens through to early adulthood haunted me.  When I came to terms with the fact that I was gay it was amplified. I was able to camouflage my sexuality, but my disability was always forefront.  

I did not know any other amputees when I was growing up. All the amputees I met were at clinic and they were much older.  Even in medical and clinic situations, my stump was a close guarded appendage that I was extremely uncomfortable to display – let alone to have it touched.  When I lost my leg I was 10, school was rough – we all know that kids in their innocence can be cruel with things that they do not understand.  I myself did not really understand.  When everyone else was running and jumping, I was on crutches and just about to start the journey of rehabilitation.  Moving into high school I was struggling with identifying my sexuality.  This, topped with the day to day comments and taunts about my disability, caused me to pull back, caused me to question my place on this planet.

Coming to terms and understanding about my sexuality even at that point in time was an easy transition. It was there but, unless I chose to disclose it, no-one would ever know.  I was old enough and (thanks to early internet gained information) able to form a circle of friends who helped me understand who I really was.  But I felt so disadvantaged as I was now gay with a disability in a harsh world. Who would want to enter into a relationship with me?

Technology in limbs was moving fast and advancements meant I could walk (Gate) more naturally and I could, with long pants, feel like I was blending in. However, I was always self conscious of the fact that I was so different.  

I was now of an age where real relationships could form, both on the emotional and physical sides, but I was so guarded. Quick interludes could happen, but I was unable to commit to anything more.  To do so would mean that I would have to face my fears. The fear of judgment. The fear of questions. The fear of showing the most intimate part of me.

In my life I have had 3 real relationships. I sabotaged the first 2 with my insecurities.  Reminiscing on them, I feel guilty that someone was prepared to commit but I was just so insecure with regards to my disability that I destroyed any chance.  The third was so stubborn that he saw through my subterfuge and used understanding and compassion against me.  He was able to understand my struggles with my disabilities and was there for me – without ever asking questions or showing judgment. He was in fact my unspoken support in life.  Not just my partner, friend, confidant and lover – he was my disability support person who I unwittingly relied on for so much.

In our relationship I never let him see me fully “disabled”. It was there, but I never let him see my stump. Never let him see me without my limb on – no matter the pain and suffering I had to sustain.  I couldn’t.  I was always in bed first so he would not see me crippled. One night he came in and sat on the edge of the bed with a cup of tea for me, as he did many nights to chat.  This time was different. He said that he’d noticed that I was struggling, limping and in noticeable pain.  I tried to disregard it as nothing, but he pushed asking me what was going on. I felt cornered and vulnerable. He said that he wanted to know. He needed to know. He could feel I was suffering and he loved me and it hurt him that I could not talk to him.  Reluctantly I explained that I had a pressure sore that was inflamed and causing extreme discomfort, but that it would soon be gone.  He asked so many questions that I had never wanted to answer. I did though.  Then he asked to see my stump – something I had never let him see. Something I never wanted to share with anyone. It was my dirty little secret that I never wanted to see light of day.

I gingerly slid it out from under the covers, revealing its pale pasty inflamed self. He looked at it with so much compassion, then he looked me in the eyes and asked if he could touch it. I was welling with tears from the fear.  The fear that he would be repulsed. The fear that he would see just how weak I was. The fear that he would see me as a crippled freak.  

He put both his hands on my stump, one either side of my knee. He was so gentle. He whispered how he wished he could take away the pain.  Then he lowered his head and kissed my knee and from that moment I just felt safe, I felt free, like the weight of the world had just escaped me. In that moment I knew that he truly loved me for all of me.  He had so many questions. We had been together for almost 8 years and not once had he asked. He just knew without asking how I felt about my disability.     

From that very moment all my self doubt about my disability just washed away. I lost the feeling that I was a freak who needed to hide that part of me from the world.  It was a strange feeling that took me some time to come to terms with.  All these years of feeling this way had become a part of me, one that I know I used to push people away before they got too close.  It took the love and compassion of someone understanding me for me. 

Something that should have been available to me when I was younger.

You see when I first lost my leg, like most amputees, I grieved for it. In losing a huge part of yourself, you feel disconnected, you become different from and to everyone.  I had no real supports in this to help me understand that I am still me, with just a little less of the physical me.  My family did their best, but it felt more like pity and remorse for what they felt they had done to me.  We live in a world that is just finding its understanding, I mean real understanding where things outside of the “normal” are normal.  

Being part of an organisation like PDA to me is normal. It offers supports and information to those who need it when they need it.   In a world surrounded by so many you can feel so isolated. I wish that groups like PDA, made up of people just like me, were there when I obtained my disability.  I lost so much of my life living with insecurity, self doubt and what I now know as resentment.   It just took one person to change my life for the better.  Disability has been around since the dinosaurs, but still the information and supports are not getting to where they need to be.  I used the internet (with its limited capability back then) to help understand my sexuality, but the information I required to help me understand my disability and issues surrounding it were just not there.  The other thing I have taken away from this, is that the people who love us most and are close to us are our unspoken heroes. They take up a role we never expected or wanted them to have. 

Vale John Moxon

It is with great sadness that we learnt of the passing of PDA’s founding President and tireless disability advocate, John Moxon.

A true gentleman, deeply respected by the PDA Board, its Members and the disability community.

John’s friendship, support and guidance was always appreciated and we will miss him greatly. A truly wonderful man.

We send our love and thoughts to Margaret, Bruce, Ray, Karen and grandchildren.

John, you will be greatly missed.

R.I.P.

PDA’s President, Andrew Fairbairn, interviewed by ABC Perth Radio on Accessibility Living Standards.

With WA, NSW and SA opting out of changes to the National Construction Code, disability and housing advocates are asking government to adopt the new construction measures and mandate the proposed code.

PDA’s President, Andrew Fairbairn is a staunch advocate for these necessary reforms to Accessibility Living Standards, having recently endured a 3 year upheaval in having his home retrofitted to allow him to live a comfortable, safe and reasonable life in his own home.

Earlier this week he spoke with ABC Perth’s Nadia Mitsopoulos, Presenter of “Mornings with Nadia Mitsopoulos”, about this important issue.

You can hear his interview here from 13:00.

https://www.abc.net.au/perth/programs/mornings/mornings/14030658

Congratulations to PDA’s QLD Director, Sharon Boyce, on being announced as Chair on the Queensland Disability Advisory Council.

“Queensland Disability Advisory Council members announced.

Queenslanders with disability will continue to have a strong voice with the appointment of fourteen members to the Queensland Disability Advisory Council (QDAC) for a three-year term to June 2025…

Dr Sharon Boyce, Chair, QDAC was excited to chair the Advisory Council for next three years.

“It’s important we continue the great work already achieved by the previous advisory council, to represent the diverse interests of Queensland’s disability community and the disability sector,” she said.

“The Advisory Council will provide specialist advice to government on a wide range of disability initiatives and issues, including new national and state disability strategies and the National Disability Insurance Scheme.” “

https://statements.qld.gov.au/statements/96074

A Shower, a Shower, my Kingdom for a Shower

Written by PDA’s TAS Associate Director, Tammy Milne

PDA’s talented Tammy Milne has written an informative article for “Tasmanian Times” around her recent mobility scooter accident , which involved a hospital visit or two and additional accessibility issues stemming from ”becoming more disabled”.

As usual, Tammy words not only invite us along on her journey navigating disability issues, but also draw attention to important topics and the need for action.

In this article, she challenges Australia’s apathy and existing roadblocks in providing adequate, accessible and necessary housing for our ageing population and disability community.

It’s a great read, so grab yourself a cuppa and head across to:

www.tasmaniantimes.com/2022/09/a-shower-a-shower-my-kingdom-for-a-shower/

Finding ability in a world fixated on disability 

Written by Mark Pietsch – PDA NSW Director

Chances are that if you have a disability, you know that it is going to be a central topic in your life. Though most avoid direct questions or expect an answer that focuses on the downsides. Hidden in all the discussion of barriers, are stories of overcoming.

Kids are the most blunt. They make me a laugh, asking their parents “why is that man using a ….(walking stick, wheelchair or walker)? He’s not old?” Usually followed by a parent shushing or quickly whisking them out of earshot. I’ve learned to welcome the questions and seek out opportunities to highlight that people living with a disability are people. We are neighbours, friends, family members, co-workers and even employers. 

I live with a musculoskeletal movement disorder and in addition found out that I have been living with Autism for the past 30 years. Apparently, I was one of the last people to realise I live with Autism. Colleagues in the disability sector just assumed I already knew. Though in hindsight I suppose spending your spare time reading the NDIS ACT or legislation isn’t exactly neurotypical. Though for me, it’s normal; my normal.

The National Disability Insurance Scheme (NDIS) is an insurance scheme that is available to support Australians with significant disabilities both current and in the future. It’s a pledge to help address the barriers in the lives of people that seek to have an ordinary life and to do things that most take for granted.

For me the NDIS enabled me to capitalise on my ability to fall through the cracks and find gaps in services by helping others to avoid the same issues. The NDIS funds me for 10 hours of support on the job a week helping me to overcome disability related barriers. Now as a result, I am the founder of Ability Links. I employ 12 people (most of whom have a disability or a family member with a disability) and support many people with disabilities as a registered NDIS provider.

Across 2020-2021 the NDIS invested $23.7 Billion into the lives of people living with a disability,  employing 270,000 people and returning an expected $52.4 Billion to the Australian GDP in ancillary benefits (Per Capita, 2021). This is in addition to providing dignity to people with significant disabilities, and the opportunity for greater self-determination. That is an astounding 2.25% multiplier effect resulting from indirect benefits associated with NDIS funded supports. The injection of funding into the care and health sector helps to provide stability for Australia’s most vulnerable people and employment security for a number of industries that have innovated to meet our needs, then providing the opportunity for Australia to enter the world market with inventions and businesses based in the sector. 

As a person originally hailing from a small country town in rural NSW, I know all too well how hard it can be to access health services away from capital cities. The NDIS has thrown a lifeline to people wishing for the lifestyle living in the bush brings, but also provides much needed resilience to embattled regional practices. With years of fire, flood, drought and a Medicare price freeze that has likely seen all three. It is a wonder that Allied Health still practices in rural areas – especially with strains to cost of living and fuel. The NDIS again provides stability, and the consistent support provided by allied health to the disability community means that they have a better chance of retaining staff. If they keep their doors open, someone is there the next time the local footy player has a sprain, or a workplace rehab visit may not mean a two-hour drive to the next regional centre. If rural practices close it isn’t just a handful of jobs lost, but also the goodwill, sponsorship and the money outside the local economy that is lost. This hurts everyone.

I was born with several malformations of the spine and a dodgy nerve that causes spasms. I’ve come to rely on Allied Health to keep me moving. For years this meant hours of travel to get support to manage my disability. At 17 I remember being told that by 25 I’d likely rely on a wheelchair. With few role models to tell me that a wheelchair or other assistive technologies are not to be feared, I felt like I had been punched in the guts. I was afraid of being different and of missing out. Today, coming to know the disability community and the intelligence, resilience, and potential within I’ve come to embrace my differences.

In the past I worked desperately to live in denial about my limits and disability, eventually resorting to training 3 hours a day and getting involved in youth work and fitness to keep up my routine. However, life happens. I ended up being crushed by a forklift attachment that fell on me and tore through the heel of my left foot. Unable to train and unable to care for myself, I was in dire straits. I ended up living in a motorhome for years, with little support or assistance from family. 

No running water, no septic and unable to really do a great deal on my feet. Eventually I was able to make the bus into a home, build a water filtration system and other modern conveniences all whilst seated. Eventually moving from regional NSW and youth work to study Psychology and Social Sciences at the University of Wollongong, where a scholarship from the Movement Disorder Foundation provided a much-needed boost to my opportunity.

The 2022 Movement disorder foundation Scholars Lunch

Today I use a walker, a wheelchair, a mobility scooter or one of my many walking sticks to get around. These things bring me freedom and allow me to make the most of my ability safely. I especially like my sticks. A walking stick doesn’t have to be cold and clinical; I have many different types, shapes and handles. They are an extension of me. One question I’ve been asked is which leg is my bad leg? The answer is both. Whilst one was crushed, the other falls from under me due to a nerve that is impacted by my spine. Having the right assistive technology helps me to get on with my day safely. It may highlight me as different, but that isn’t necessarily a bad thing. Sometimes they act as a trigger for compassion. Whether you ask for it or not….

After moving to Wollongong and starting my first year at University, I unfortunately had my right leg drop out on some stairs, leaving my ankle on my left leg shattered when I fell twisting my foot completely backwards. I still regret not getting a picture. 

My ankle after two surgeries leading two 12 months unable to weight bear.

As a student of the social sciences, the word social capital is used a lot as a predictor of resilience. That is, the more people we have in our lives (friends, families, communities, acquaintances), the more likely someone is able to bounce back from a setback. Moving six hours from home, I didn’t know a lot of people. Outside of the NDIS there are not a lot of options for support. The NSW health system and community supports were limited. A house with stairs while using a wheelchair is not ideal, so I was mostly housebound. To go out, I had to get out of the wheelchair, then bum shuffle my way down the stairs with the wheelchair in tow, then get myself back in the chair. It wasn’t a great situation. 

The Makerspace at the University of Wollongong was a welcome reprieve for me. The “space” was truly one of the most inclusive communities I have experienced. I regularly visited in a mobility scooter to be welcomed by friendly faces and people welcoming working together to make their lives better. It was there I built the Kangaroo Crutch that helped me to get out of the chair by transferring my weight from my ankle to my knee. The concept of the Makerspace is something I love and my experience is what led to Ability Links creating a new Makerspace for the disability community of Wollongong.

The Kangaroo crutch allowed me to walk without putting weight on my busted ankle.

I remember one situation, just after getting out of hospital. I was on campus in my chair. Being a new chair user, I had to use the strength of my triceps and go backwards up hills. One day I ended up getting a wheel stuck in the garden bed out the front of the bus terminal at UOW and quite literally catapulted myself into a bed of woodchips. I was mobbed by onlookers and people wanting to help. I felt extremely embarrassed, but it helped me to understand that people are willing to help and that it’s ok to ask. That said I distinctly remember an experience where an international student saw me struggling and took hold of the back of my chair and pushed me to the library. It was considerate of her, but I didn’t ask for the help, and she didn’t quite understand that I wasn’t heading to the library, but instead the Unibar. That experience highlighted to me that quite often people make assumptions as to the needs of people with disabilities. Here’s a tip: Ask before helping. The gesture may be welcomed, but just pushing me away essentially felt like I was being kidnapped.

Finding a semi accessible home for myself with good housemates was lifechanging. It meant being able to access the community. Eventually it led to a job helping others with a disability as a Support Coordinator, where I have found my experience, skills and past challenges have real meaning. Gaining support from the NDIS really opened opportunities for me that were just out of reach. For me it means greater safety and security. While the NDIS isn’t a direct payment to me, its investment in my life has meant not having to be in vulnerable living situations. It has meant being able to have access to the community, education and to take control over my future. It has given me equity and the opportunity to be at the same starting point as my peers.

The medical model of disability focuses on changing the individual. The social model of disability focuses on changing communities and the lives of people with disabilities. Most of us can’t and don’t want to be “fixed”. We want to be accepted and included. We have impairments that need to be addressed to be meaningfully included. With the NDIS and the connections I have built whilst supported to get out and about, I am better prepared to use my abilities to their full potential. With support I have been empowered to take my life into my own hands. 

I see how much the community of People with Disability has to offer, though we must help people move past shallow judgements and break stereotypes entrenched by the medical model. We; people living with disabilities are more than our barriers. Inclusion starts with intentional conversations. True equity comes from understanding and being heard. That means sharing our stories, speaking up and showing what we can achieve when our needs are met. I dream of a day where people are judged on merits, and people living with disabilities are represented in all areas of society, have a place at the table and have a meaningful say over how we live.

Physical Disability Australia (PDA) is calling on the Albanese Labor Government to ensure people with disability are given a voice at the upcoming Jobs and Skills Summit (the Summit) in September.

Unions, employer groups and civil society will be given a voice at the Summit. PDA contends that given the under-representation of people with disability in these groups, people with disability deserve dedicated representation. This is particularly important when this under-representation extends to the Federal bureaucracy and Members of Parliament.

“We call on our friends in the Union movement, employer organisations and civil society to support our call – we all deserve the opportunity to enjoy the dignity of work on equal terms”.

People of working age with disability are twice as likely to be unemployed as people without disability and, at a time of record low unemployment and severe skills shortages, now is the time to act.

There is a history of well-intentioned undertakings made at times of reform such as this. However, history has also shown that these undertakings rarely translate to better opportunities for people with disability. The lack of lived experience among decision-makers plays a large part in this.

Feel-good statements about the importance of diversity and inclusion and commitments to ‘do better’ might boost corporate reputations and provide good narratives for the media. However, they are meaningless to people with disability when nothing changes and no one is held accountable.

“People with disability have the skills, what we need is the opportunity and support to secure a job”.

Background:

Approximately 2.1 million working-age people are living with disability in Australia – only 53% are in the labour force, compared to 84% of people without disability. Some not in the labour force cannot participate due to their disability, but around 30% (or nearly 300,000 people) do have some desire to work.

The entrenched disadvantage, negative attitudes, stereotypes, and perverse social security rules that actively disincentivise looking for work suggests that the actual number available is likely to be much higher than 300,000.

A report by PwC estimates that almost $50 billion in GDP could be added to the economy by 2050 if Australia moved into the top eight OECD countries in employing PWD. The latest available data (2011) has Australia sitting at number 21 out of 29.

Signed for and on behalf of Physical Disability Australia by

ANDREW FAIRBAIRN SIMON BURCHILL

PDA PRESIDENT PDA GENERAL MANAGER

PDA invites other Australian disability organisations, people living with disability and those with a supportive interest in the disability sector to join in this call to ensure that people with disability are given a voice at the upcoming Jobs and Skills Summit (the Summit) in September.

For more information or to show your organisation’s support in this campaign, please contact Simon Burchill (PDA’s General Manager) via manager@pda.org.au, Natasha Nobay (Communication and Engagement Manager) or Andrew Fairbairn (PDA President) on 0466 526 605.

The Voice of Boyce – “Exploring Art” with Dr Sharon Boyce

Sharon Boyce is PDA’s Vice President and QLD Director.

Accomplished in many areas (including but not limited to advocacy work, academia, journalism, community education and public speaking), Sharon’s creative side is another important part of who she is.

A passion for art and looking outside the norms, she loves to create beautiful art and bring her imagination to life.

In her new PDA vlog, she talks about her art and the way in which it has evolved more as her disability has created more limits on her life.

Well worth checking out on PDA’s YouTube channel:

https://youtu.be/2Gg_850h_T0

Whilst you’re there why not check out our other videos and subscribe to our YouTube channel.

How I found success.

Written by Sarah Styles – PDA’s QLD Associate Director

This year I was fortunate to win the Sector Innovation Award at the Developing Australian Communities awards gala. My business has just celebrated its second birthday and I am pleased with what we have accomplished in this short time given an overnight success is ten years. While we have much to do in becoming set up then established, we are currently writing a short film, 2 musicals and a series of picture books which will also be toured on stage in Auslan. All this while my body is a full time job. This required the right team of people which I didn’t get until age 43.

Over the years people have been amazed when I share my dreams and aspirations. They assumed i had already achieved a successful music career despite my struggles, which couldn’t be further from the truth. While being seen as enjoying the lifestyle I desired yet did not have is no compensation, it did present me with something I had not considered. How others saw me. Their assumed success was a win and that helped fuel me to do what I could in preparation for the day it was possible. No matter how much my disability affected my body and therefore mental health tempting me to give up, I had to hope for a future opportunity. I was not picky. I would accept what came my way. From age 16 I volunteered in the community to learn whatever I could. I said “yes” to any opportunity. Due to this, I had experiences that I had never dreamed of. They were one off so did not affect my health adversely and they were exciting. 

My disability had not been diagnosed during that time.  Neither had my medical condition, ASD, hearing loss or PTSD. This would not happen until I was 38. This lack of information Hindered any success attempted. It takes years after diagnosis to work out the best management regime for each condition. This then becomes the principal focus. The lack of support also was a hindrance meaning extra years were required to get on my feet.  

Fast forward to 2020 when the world was united by lockdown and the online access the disabled community asked for prior, yet deemed too hard and expensive was now suddenly available to all. The world opened for the first time in my life. It was thrilling to enter the arena as a participant. Often I wasn’t able to be a spectator! Would life begin at 41? This was the time where support started to become available. It was 2 years before the right team came togther. During the 25 years it took to arrive at my future, I had been taking advantage of all free webinars or local workshops run by my council in preparation. I knew with my necessary lifestyle only a small portion of that information was appropriate to me, but I trusted it would be enough and it was.  I leapt into action sure of myself and grateful for the required support. I had sought support my whole life of course and when it didn’t come year after year, I focussed on my wellbeing. It got to the point I didn’t believe it would come. The only option left was to find peace in my reality and make a new life. One possible with little to no help. 

The saying “If you work hard enough you will succeed” is shared a lot yet how much merit does it hold? Yes this character trait is desirable and necessary, yet no one can achieve  goals on their own. Regardless of whether we are poor, disabled,  part of any marginalised group, or well off with health, we all need the correct support to succeed alongside grit. That support tends to be sporadic for those in marginalised groups if available it at all. Once I was at peace with this, my mentality began to improve. I felt at peace. 

So what did it take to be successful? 

1 seeking opportunities and saying yes to whatever is available. 

2 accepting my reality to receive internal peace and happiness even if nothing changed. 

3 finding grit as nothing is achieved without it.

4 trusting the right support would come at the right time and trusting the process to get there. 

PDA’s Vice President/QLD Director, Sharon Boyce, was interviewed by the ABC around the need for greater public awareness of COVID-19 antiviral medications and their accessibility and eligibility.

“When academic, author and disability advocate Sharon Boyce contracted COVID-19 in April, she and her doctor were scared about what might happen.

“I do have lots of issues with breathing, lots of issues with my health and [an] auto immune [condition], and I’m on high level cortisone and have diabetes,” she said.

The Toowoomba resident was being monitored in a virtual hospital ward and had antiviral medication delivered to her door by paramedics.

“It was very scary about the what if [of having COVID-19], but once I got the antivirals and started them, I didn’t have major problems,” she said.

“I did have issues with breathing and coughing, especially, which was very difficult for me with my neck, but the antivirals seemed to stop and calm that down and maybe not get as bad as what it may have done.”

Dr Boyce said more awareness was needed about the potential benefits of the medications.

“I think there really needs to be a lot more information out there about what antivirals are, what they do, how good they can be and what they can do for people to break down those barriers of fear.” “

To read the full article go to:

https://www.abc.net.au/news/2022-08-02/qld-covid-coronavirus-antiviral-medication-who-is-eligible/101288840