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.

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