As a woman of a certain age, I have noticed a change in the way I am perceived.
I have always been disabled. Had mobility aids since birth and always thought the primary factor for the discrimination I encountered was related to my disability. Well, welcome to the new age of being older.
I am now seen as an elderly lady on a mobility scooter. Not a disabled woman on a mobility scooter.
So, like a slap of reality, I am now encountering age discrimination.
I have white hair – trendy cutting edge white hair, but still white hair. This labels me as old.
Where in the past I put down being sidelined because of disability, now I can add being aged as well. I am simply too old to be relevant.
They say age is a state of mind. Well hell, my mind is sharp and active and connected to happenings of the world.
I go to hip festivals and dance with the young ones. I’m a cool person aye, BUT I am still old(er).
Not old enough for a senior’s card but, when I am, I will wield it like a badge of honour. Unlike many of my peers I will be blessed to have reached old age.
You might be reading this and think, go you, living the life. However, there is a more sinister side to the intersection of age and disability. There is a hidden cost to growing older. According to NDIS National Quality and Safeguard Commission research (2023), people with disabilities are 5 times more likely to die of preventable illness than the general population and die predominantly much younger than the general population. 49% of all people with disability who die early have physical disabilities.
The intersectionality I now have to navigate in my life is age and disability. Well, I’m not going down without a fight. There is plenty of fight in the old dog and I’m ready for it and it seems my life depends on it.
I need to be proactive in my own healthcare and I can. I need to be vocal at my GP and my specialist about my needs and expectation of their care for me.
Discrimination in the healthcare system is real for people with disabilities. A study by Roger’s et al (2015) reported that 1 in 17 people with disabilities that present for medical treatment feel discriminated against. Anecdotally this is much higher.
We are often ignored, not believed or misdiagnosed. I have a bloody loud voice (my croaky voice) and I will use it to make sure that everyone receives the care they need and deserve in this, our lucky country. I’ll be doing this education one clinician at a time. Hard work, but guess what? You can do it too. Think of all those other people with disabilities unable to articulate their needs. Our work will help them. Let’s smash that discrimination.
I’m not a granny on a scooter. I am a warrior on my electric steed, waging war on ageism and ableism. Adding another bow to my quiver of “what needs to be torn down” in our society.
Image: selfie of a woman (Tammy the blog’s writer) wearing glasses, with a trendy white hairstyle, wearing a pink t-shirt with “volunteer” printed and a pink/orange neck scarf. By her side is a younger woman wearing the same t-shirt, sunglasses and a baseball cap. She is Michelle, Tammy’s support worker. They are working at Hay Day’s recent music festival in Hobart. Other people are interacting behind them.
I have a burning desire to be included and to experience as much as I can before I pop the perch.
I am disabled. I use wheels to get around but, in this day and age of anti-discrimination and inclusion, this should not stop me from doing everything my heart, energy and pocket desires.
And so, it was with this motivation behind me that I applied to be a volunteer at the Hay Days Festival in Hobart. This festival brings together some of the most cutting-edge artists locally, nationally and internationally. I wanted to go! I am a big fan of Genesis Owusu after seeing him perform at Party in the Paddock 2023.
Yeah, an old chick like me loves Party in the Paddock, with my most memorable moment seeing Lilly Allen and singing along with her song “F##k You” with about 4,000 other people a few years back. I may be disabled, but I’m not dead and I love to get amongst it. Maybe a result of being an older mum with a younger adult child or just being hip. Who knows?
Financially the cost of a ticket to the two-day festival was not going to break the bank, but it did mean that I was going to have to cut some of my other activities to attend. I could have paid, but there might have been other things I would have to miss out on to compensate.
And so, with this in mind when my daughter said she was applying for paid work in the bar at Hay Days I thought, well why not see if I can volunteer. I have skills. Heck, I have a degree and a couple of grad diplomas. I’m smart. I could be useful and then get a bonus ticket for free. Well not free, but free for doing work. I work for the ticket, a 6-hour shift in fact.
And so I applied. I made it clear on my application that I was a wheelchair user and disabled. I made it clear that any jobs offered to me must be suitable for me to do in my chair. I made full disclosure, let the dice roll on my application and hit send.
A few weeks later I received a reply. I was in! They wanted me. I say this in a surprised way because, let’s be honest, discrimination is real. It still happens to people with disabilities and, to be brutally honest, people are often scared to give people with disabilities a go.
Even though I worked in education for 33 years, they didn’t know me. They didn’t know what I could do and there is still so much unconscious bias and fear in our world directed towards people with disabilities.
So, I rocked up on the first day. I scoped out my workplace for the next day and then settled in for a day and evening of absolute sheer bliss. I even bought a baked potato from a food vendor with some sign language skills. (Oh, that’s another thing: when things are really loud, I can’t make my voice project for people to hear me, so I sign. NOT a barrier, but certainly something to be accommodated).
I checked out the loos. Look, to be honest, that was an issue. 4,000 people could use any of the toilets at the festival, but I could only use one. The accessible toilet was so accessible that it seemed to be used by the 4,000 abled bodied people too. Not a great thing in terms of cleanliness – especially for a person with a disability who has to touch everything in the loo to get on the pot so to speak. The ‘ableds’ (abled bodied people) can just squat over the seat, make a splash, leave a cup or two in the loo for extra obstacles, leave some toilet paper strewn around, touch very little and leave.
Unfortunately, not so easy for folks with chairs and wonky legs and dodgy bits, who have to touch all the grot left behind by those unnecessarily, and unfairly, using the facilities meant for those of us with true accessibility needs. To be honest, I only went to the loos once a day, holding on for as long as possible, minimising the need by drinking less so I didn’t have to go more than once. On day two I went and the nice ambo folks next to it had to fish a cup out of the actual toilet and help me negotiate it. Thanks legends. You folks go above and beyond as vollies (volunteers).
On thing not so great about attending many events is that, as a person in a chair, we sit about navel height to everyone else. So imagine trying to see an act at a concert if all you can see is the person in front’s bum. Hemmed in by a sea of bums is not my idea of a good time, but hey each to their own.
But there is NO bum viewing for me or other persons in wheelchairs at Party in the Paddock or Hey Days. We get a viewing platform that has us positioned above the sea of bums and provides us with a clear view of the stage. It also mitigates the risk of some drunk dude or dudette landing on our laps, or accidentally crashing into us whilst vigorously dancing to the bands. This is so great. That’s accomodation and I for one really appreciate this.
I bopped and bopped to Genesis and The Jungle Giants and PNUA, squawking along to, “Stay Blessed”, “Rakata” and “Cold Heart”. It was bliss. Best night EVA! (Well, one of them).
The next day I rocked up (rolled up) to my shift at 11.30am. Signed in and collected my vollie t-shirt, so pumped that I got a uniform. So I forgot to mention that when you get me as a vollie, it’s a two for one deal. I come with my very own support entourage. My support worker Michelle. So Michelle and I rolled over (well she walked) to our workstation. Our duties for the next 6 hours were to check tickets using a scanning thing (much like my old Job checking in books as a librarian) and then I would strap a wrist band on to the owner of the ticket. In the next 6 hours I touched so many hairy, skinny, and largish wrists that I could do a thesis on the human genome variation and how it affects wrist diversity. (Maybe in my next life, I’m really not that invested right now).
Before starting the shift, we were briefed on what to do what to expect and then sent forth to work. I loved it. Bopping between customers, bopping with customers and strapping on wrist bands. Even though I could not really have huge conversations with people when the music started. I could sign/gesture enough to make myself known.
The only real thing that hurt my fragile ego was when I said, “I bet I’m your first disabled volunteer” it was a “yes” reply. But why I wondered. The next was being told that when I was being considered as a volunteer, event management presented me to my team leader as an offering which she accepted with a “yeah I’ll take her” like I was a risk. Man, I have mad skills and you all should be looking at the person and not the disability.
Apart from that small infraction of ableism, the whole experience was just awesome and I would do it again. (Just please fix the toilet situation).
What I’m also advocating for is that, hey, if you have a disability and think you can do something with expertise and skill, go for it. If you are skilled and able then it’s not a charitable offering to allow you to work. It’s equality.
My time as a volunteer at Hay Days was the best, most excellent experience and your’s could be too.
Image: a selfie of a woman with grey hair, wearing sunglasses, a pink shirt and orange/pink scarf and a huge smile backstage on the lawn at a music festival. Two men are standing in the background.
On International Day of People with Disabilities (#IDPwD), I was pumped to watch the Disability Leadership Oration on ABC by Natalie Wade. The conversation was not what I expected, but it was just what I needed to hear. After seeing the Oration, I started thinking about what it was really like growing up with a disability.
Natalie Wade is a human rights lawyer and a total boss in everything she does. Natalie happens to be from the same place as me – South Australia. I first saw her at my previous workplace. Of course, it was in the elevator of a tall government building and I wondered, as a fellow wheelchair user, if she ever felt like she was “faking it until she made it”?
During the ABC address, Natalie talked about her experiences growing up in the 90s and advocating for her rights. Listening to her speech felt like holding up a mirror to some of my childhood memories. Growing up as a disabled child in the 90s meant being used as a test model for society to determine if disabled people could genuinely belong in the mainstream world, rather than being institutionalised and segregated from society.
Although I am currently in my peak leadership prime, I must convince myself that’ll I am good enough before wheeling into a board meeting.
I have noticed that the younger disabled community nowadays proudly refers to themselves as ‘disabled people’. This made me wonder about the shift from ‘person with a disability’ to ‘disabled person’. I started questioning if my perspective on disability is still stuck in the 90s (like my music taste). Although growing up in the 90s had its cool moments like girl power, Tamagotchis, and snap pants, it was a difficult time for disabled kids.
I’ve grown up and worked in the housing sector for over 15 years in government and the NDIS landscape. However, it can still be challenging to be the only disabled person at the table of executives. Sometimes it feels like society talks about the disabled community as if we are some unknown alien species.
When Natalie addressed the Nation, I agreed with her sentiments and teared up while listening. Natalie’s reflections on her life shed light on my own experiences of growing up as a disabled child in the early 90s.
In 1992, I left the South Australian Crippled Children’s Association and started attending a mainstream school. My parents had to fight hard to get me into the same school as my siblings. Teachers would openly talk to my parents about how I should go to another school, that I wouldn’t fit in, that I wouldn’t keep up. Everything was said in front of six-year-old me sitting in my pink wheelchair. My parents didn’t listen to them. So I was the first and only disabled child using a wheelchair at the local school. I often felt excluded and unsupported. It’s not a solid foundation to prepare the leaders of the future.
Whenever I asked for help with schoolwork, my teachers would advise me to focus on my life skills. The school believed that I could not have a career or live independently. No one asked me what my future aspirations were.
Natalie’s speech resonated with me, highlighting the immense challenges disabled people face. Her words exposed the historical trauma that many of us experience, constantly feeling inadequate and unworthy due to society’s perception. This unique form of imposter syndrome is all too familiar to my community. Growing up, I was implanted with the belief that my disability was a flaw that needed to be hidden to assimilate into the norm. For decades, I carried this perspective with me unquestioned and ingrained by people around me.
So, I overcame barriers and made my aspirations like it was my duty to exist in a world not created for me. This is one reason why society views disabled people as resilient. It is not by our own making; we have no choice. Sometimes it feels like the idea of being successful and disabled at the same time cannot occur simultaneously.
When I became a mother to my daughter in 2019, I made a personal commitment to ensure that her life would surpass mine in terms of opportunities and experiences. However, at that time, I viewed my disability as a deficit. But my disability is not my weakness. My own ableist beliefs were unchecked.
The disabled community has evolved, and we are no longer content with simply asking for inclusion. We demand more than just the bare minimum of support and services. We deserve equal access to education, employment, housing, and all aspects of life, just like anyone else. This might seem like common sense in 2023, but Natalie presented a radical concept to the nation a few weeks ago.
So, after hearing Natalie’s address, I will take on leadership roles. It is time for me to move past the outdated narrative of the 90s that shaped my childhood identity and tackle the outdated thinking disabled people are still faced with today.
My parents raised me to be as independent as possible. With three younger brothers to care for, Mum and Dad didn’t have a lot of time to help me do basic things like feed me. I had to find ways to manage, and this has made me a creative thinker.
So when I got stuck in a lift at university, unable to reach the button, we found a solution: a stick. My first prototypes were wooden from Bunnings and I quickly realised that these simple tools allowed me to do way more than press lift buttons. At home I could turn lights on and off! And type if I couldn’t reach the keyboard! And move things closer or push them away. Dad was able to make a holder and attach it to my wheelchair so I could take my stick everywhere.
In the early 2000s I was invited to be a guest speaker during disability awareness training for all staff at Main Roads WA. I introduced my stick and got participants to guess what I could do with it. At the end of the session, a man at the back of the room put his hand up and asked why I didn’t have fibreglass sticks. I told him I’d not heard of them. He took my address and dropped three or four off to my home the following week. They are the flag poles from the children’s crossings flags. Main Roads work with WA Police to supply the flags to the lollipop men and women. They often had some returned due to slight damage or dents and were happy to pass them on to me, for free!
At first I found them heavy and awkward to use, plus they were narrower. But very strong – no more breaking wooden ones! I bought stoppers to fit to one end, and plastic tubing for the other, which help to protect my teeth when using it in my mouth. In 2015, when I got my third assistance dog Upton, we added an elastic band. This was because he found it difficult to pick the stick up off the floor. He quickly learnt to pick it up from the band. It also stops things sliding all the way to my nose when lifting them up!
So what can my stick do? A lot of things. For example:
I even sleep with a stick as it helps me move my sheet and blankets up and down! The only thing I use more every day is my wheelchair. Without my stick, I’d probably need 24 hour care. I enjoy time alone at home so I’m grateful that I have a low-cost, simple solution.
And this simple solution with a profound impact on my independence has recently won me awards! When I saw PDA promoting the Simply Open Awards earlier this year, I made a 5 minute video on what my stick can do for me. I submitted it in September and found out in the last two weeks that I won not one but two prizes! The Wild Card Award from all entries in Australia, New Zealand, USA, Canada, England and Ireland, with a cash prize of £750 (AU$1,371.31). This was announced in a livestream on Friday 1 December on social media, hosted by Open Inclusion.
The second one was announced on World Human Rights Day, 10 December. Two entries from each country were considered for the global awards. I’m surprised and proud to announce that my stick hack video was in the top two in the world! My prize is flights and accommodation to Vienna, Austria in February to attend the Zero Project Conference!
Thank you to the judges, sponsors and the organisations who run these amazing awards. We hear a lot about expensive assistive technology, but sometimes it’s the simple, everyday things we use that can help the most. I appreciate this opportunity to showcase my stick to the world, and encourage you to enter next year.
Never in a million years did I expect to win. My little video about my stick, so important that I can’t live without it, impressed the judges so much. I still can’t believe it. It’s going to be freezing in Vienna (and I hate the cold), but I’m looking forward to representing PDA, Australia and people with disabilities who want to live great lives. I hope I’ll do you all proud!
Thanks,
from Melanie
Australia commemorated International Day of People with Disability (IDPwD) on Saturday, December 3rd. IDPwD, established by the United Nations in 1992 and observed in Australia since 1996, serves several key objectives: fostering a deeper understanding of the challenges faced by People with Disabilities (PwD), rallying support for upholding the rights, dignity, and overall welfare of PwD, and advocating for the full integration and inclusion of PwD in all facets of society. 2018 Australian Bureau of Statistics data found that 17.7% of the Australian population, 4.4 million Australians, were PwD.
IDPwD events in Australia were organised by various government bodies, workplaces, schools, and universities nationwide. These events all shared a common theme: educating the public by giving PwD a platform to share their personal stories. Through these narratives, these events aim to break down preconceived notions of difference and instead emphasise the commonalities and shared experiences that connect us all. This approach humanises PwD in the eyes of those without disabilities, fostering greater understanding and empathy for the daily challenges faced by people with disabilities. In essence, these events help the non-disabled population “step into the shoes” of PwD, gaining a deeper comprehension of their lives and experiences.
What is disability? In Australian society, we acknowledge that disabilities can be both visible and invisible forms, encompassing physical, intellectual, psychiatric, sensory, and neurological disabilities. In this context, the concept of disability oversimplifies a complex reality, based on how an individual’s physical or mental condition deviates from what is considered ‘the norm’. This perspective is often referred to as the Medical Model of Disability and is relevant when seeking treatment or therapy from healthcare professionals. However, it falls short in recognising that true barriers to the full and equal participation of PwD in society stem from environmental and attitudinal factors within our community and society.
The Social Model of Disability (SMD), originating in the UK in the 1970s, marked a groundbreaking paradigm shift in disability theory. At the core of the SMD lies the distinction between an individual’s inherent conditions or attributes and the broader societal context. According to the SMD, “impairment” pertains to the medical or biological deviations from what is considered the norm. For example, a person who uses a wheelchair may have a physical impairment resulting from a spinal injury. On the other hand, “disability” is defined as the interplay between an individual’s impairments and the obstacles presented by the physical environment and the prevailing attitudes in the social environment. Disability emerges when, for instance, a person using a wheelchair faces architectural barriers in the physical environment. The SMD played a pivotal role in helping PwD recognise that many challenges they encounter are not rooted in their disabilities but are the consequences of disabling elements within society.
The Biopsychosocial Model of Disability (BMD), which emerged in the late 1970s, was designed to offer a comprehensive understanding of how medical conditions and the disabling effects on individuals are not solely a result of biological factors, but rather a complex interplay of biological, psychological, and social factors. Amid various disability models, the BMD stands out as a relatively straightforward and all-encompassing framework. It takes into account the experiences of PwD, the societal obstacles they confront (both environmental and attitudinal), and the psychological impact of individuals’ internal relationship with disability, along with the challenges of overcoming social barriers. In essence, the “Bio” component of the BMD deals with the physiological aspects, such as the effects of impairment, like pain; the “Psycho” aspect addresses psychological aspects, including internalised oppression; and the “Social” aspect encompasses factors within the social environment, including elements like architectural barriers, such as stairs.
Internalised oppression represents a psychological and emotional dimension of disablism, arising from the way PwD perceive themselves. Given that society often ingrains a negative perception of disability, PwD may internalise these negative views, leading them to self-oppress when they perceive their disabilities as a negative aspect of who they are. This phenomenon is more likely to affect those who acquire disabilities later in life because they are confronted with pre-existing negative portrayals, preconceived notions, and stereotypes about disability that they held prior to acquiring disability.
When contemplating the inclusion of PwD, it’s crucial to assess our current progress toward creating a more equitable world. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was ratified in 2008, marking a significant milestone as disability considerations were notably absent from previous international human rights agreements. In comparison, the UN Convention on the Elimination of All Forms of Discrimination against Women was established in 1979, and more than four decades later, gender equity remains an ongoing challenge. Now, 14 years since the UNCRPD’s implementation, numerous advancements are still pending, waiting to be put into practice to enhance the lives, circumstances, and the overall inclusion of PwD, while also enriching the knowledge base within disability studies.
Most community members will have limited control or influence over the physical environment in their workplaces or places of study. We are not all architects or builders who can fix inaccessible steps. However, it’s important not to be disheartened by this limitation. As mentioned earlier, it’s the social dynamics that People with Disabilities (PwD) encounter, such as prevailing attitudes and misconceptions, that shape the extent of their exclusion or inclusion in society. Becoming more disability-aware and fostering understanding doesn’t require a comprehensive knowledge of every medical condition or disability type. Instead, it’s about cultivating an awareness of the physical and social environment, which enables you to identify and acknowledge the barriers that exist.
My top tips that individuals can implement for enhancing the inclusion of PwD: 1) Acknowledge that PwD are first and foremost individuals with emotions, aspirations, and life experiences. They are not objects of pity or charity, but rather individuals navigating real-life challenges and triumphs on a daily basis. 2) Recognise that PwD are the foremost authorities on their own lives. If you have questions, approach them with respect and inquire politely. Every person’s experience of disability is unique, and it’s essential not to make assumptions or speak on behalf of others. 3) Appreciate the value of the lived experiences of PwD. The diverse perspectives, values, and life experiences they bring to the table are constructive contributions to teams and the decision-making process.
IDPwD serves as a poignant reminder that the entire society reaps the rewards of embracing diversity. Consider the research and development (R&D) investments made in assistive technology, particularly predictive typing software for People with Disabilities, back in the early 1990s. These initial efforts paved the way for predictive text features on the brick phones of the 1990s through the 2010s. Subsequently, this technology evolved into voice-typing and voice-activated digital platforms, such as Siri and Alexa, which have now become ubiquitous. Today’s R&D efforts, centered around addressing challenges faced by People with Disabilities, will similarly contribute to the development of future consumer products, accessible to the wider public in around three decades. This underscores that progress in making the world more inclusive doesn’t solely benefit PwD; it’s a boon for society at large.
Tim Harte GAICD is the Victorian State Director for Physical Disability Australia, Chair of the Surf Coast Shire Council disability advisory committee, and a Chemistry Honours student at Deakin Universities Institute for Frontier Materials.
Photo Caption: Surf Coast Shire Council (SCSC) staff with members of the Councils’ All Abilities Advisory Committee (AAAC). Left-Right: Thomas Byrnes (AAAC Member), Tim Harte (AAAC Chair), Larry the therapy dog, Damian O’Brien (SCSC Youth Development Officer), Jennine Templar (SCSC staff), Sherridan Bourne (former SCSC Aged, Youth and Access coordinator), Cr Mike Bodsworth, Richard Porter (AAAC Member) & Abby Ellery (SCSC Aged, Youth and Access coordinator).
I am feeling my age. I am 59 years and for 59 years I have been disabled.
I have seen attitudes change when it comes to people with disability. Mostly for the better, but there is no opportunity to rest. The teaching and learning must continue. Each new generation that comes along must be handed down the history and learnings from the previous. It is hard to move forward and very easy to slip backwards. Rights are earned and must be continually justified and that’s hard.
Our work as people with disability is never done. We can never stop advocating and reaching for equality.
We can never forget that only 30 years ago people with disabilities were locked in institutions. Were locked away from society and treated with either fear by the general public or infantilised by those who cared for them. Their rights stripped from them. Many fighting to be released back into the community that they so rightly belong in. Some still fighting now to be released from nursing homes where younger people languish under horrendous guardianship laws.
The language around our community 30 years ago was insulting, humiliating and used to put us down. I cannot to this day say that those word have been removed from our vocabulary, but I can say that there is growing awareness that they are not appropriate and must not be used to weaponise and hurt us. One wonders at the motivation of those who use the words in these ways. Is it based on a lack of education or empathy?
The unemployment (or underemployment) rate of people with disabilities has not improved in 30 years. We are still undervalued as workers. There is still a lot of celebrating of employers who, as part of their PR building exercises, employ people with disabilities in a bid to appear more evolved and equitable. It’s a shame because business and Government agencies are missing out on our expertise in terms of our qualifications and skill sets and also our understanding in our field of disability. We know disability from our own perspectives and this should be valued and our knowledge and experiences utilised.
Why is it that so many agencies, businesses and our own Government departments have made an industry out of disability and yet we are not at the forefront of these endeavours? We are not in middle management. We are in management, and we certainly don’t run the organisations in many cases. This amplifies the hollowness of the words in our battle cries for equality, “nothing about us without us”.
In February 2020, $32.7 million was awarded to 28 grants across Australia to provide three years of funding for activities that will provide people with disability pathways to meaningful employment and yet statistically we are still not moving forwards.
With funding for ILC (information, linkages and capacity building) grants in the millions of dollars awarded to not-for-profit organisations, it is not disabled people who are running these organisations they are just the justification for the work. Once again, I see the theme that we need to be helped, handfed and paternalised rather than lead. One organisation has a lead program, but the real tangible outcomes from this are minimal. No real improvement of the live of disabled people just a lot of busy work.
Yes, we are often on the boards of these organisation in a nicely curated ratio. We are employed as “lived experience” consultants for co-design projects, yet we don’t drive the engine – we are merely the trailer attached to the bus that drives the industry.
This day though does come with some pride when I see the achievements of our community, our real community, people with disabilities just out there doing their thing. It gives me such hope when I go out and see disabled people like me out there too. Technology has meant we are OUT now, in our wheelchairs and on our scooters. Using our mobile devices to communicate, using our support workers to do the heavy lifting so that we can be seen and so that we can challenge inclusion.
The NDIS has been revolutionary in the lives of disabled people and for this we must be proud of our nation and a government which has seen the value in equity.
In my role as PDA’s Tasmanian Director, I am part of a national wide disability organisation that exists with just three paid part-time staff members and a board of actual disabled people. Our work output is phenomenal in comparison to other much larger organisations. We run webinars that are presented by volunteer board member and feature topics that are real to our community. We have a monthly online social gathering to actually build community and respond to people and issues that affect us and also provides some fun and a chance to socialise together. This is what a small, dedicated community in an organisation can do. Perhaps there needs to be a look at what ‘work’ the others do. I seriously have issue about reporting to the Department of Social Services and these needs tightening up. I know my small organisation does the work and goes over and above.
This year our day of celebration, reflection and recognition fell on a Sunday which meant that it was fairly quiet across the nation. My own local group is meeting for a picnic and yarn this week at a local park. The day we are meeting falls on Human Rights Day which is quite poignant, because we must never forget that disability rights and human rights are the binding principals that have seen us achieve so much this far.
We are all familiar with the journey of learning to thrive through disability. This path normally involves years of searching for answers with many setbacks in finding the best management plan and supports. Then, dealing with organisations like NDIA brings challenges that can push us past our limits. It is after years of this I found my mental health at a low.
Since my exercise physiologist is working well with me, I decided to enter a powerlifting competition. It would give me a healthy goal that involves other people in the form of other competitors and those that work with us. Turned out to be the best decision.
Benefit 1 – Starting bench press improved my body in an unexpected way!
As someone with hEDS my connective tissue is too stretchy and cannot support my body and organs the way they are designed to. As a result, my muscles need to be extra strong to support my joints instead. It’s also hard to stretch because I hyper-extend and get no benefits, even though my body is screaming out for it. My body desires to move and get strong but more often than not I get injured doing simple things.
Lying down on the bench press provides a decent stretch without injury throughout my whole body. Winning already!
Benefit 2 – Mental Health
My mental health improved immediately as expected. Physically feeling better and stronger coupled with a goal to work towards really did the trick.
Benefit 3 – Meeting people who are happy to work with me – no matter what that means!
Powerlifting Australia informed me that the next competition was fast approaching, and they were happy to make adjustments to make it happen last minute. Not only that, but there is no segregation. Adjustments are made so everyone can compete together regardless of their physical ability. Which I really appreciated. This alone was uplifting and empowering.
Competition day.
The first thing I noticed was the family vibe. Feeling that, I knew everything would be fine. Despite arriving an hour late to prevent health issues – I struggled – but they flew into action. I was informed of anything I didn’t know, such as doing weigh in, choosing what weight I’d lift for my 3 attempts, then warming up.
It takes a lot of people to make a competition run. Everyone knew their job and functioned so well as a team you’d not know if there was a problem they had to solve. I ended up pressing my personal best – which was exciting – and leaving with a gold medal!
As a spectator you can’t help but cheer everyone on. I even witnessed a world record being made. I am definitely looking forward to the next competition and I’m thrilled to be counted with everyone else.
I am a white disabled woman living in Australia. My cohort is still the most marginalised and discriminated against minority group – people with disabilities suffer discrimination in Australia more than all the other minority groups put together. 44% of all complaints received by the Human Rights Commission are in regards to discrimination because of disability (AIWH, 2023).
I am a university student and as such come across a wide range of overseas students.
My taxi driver from Lebanon on Friday night said that they had been a nurse in their home country, and that things are very different here for people with disabilities and so I am very lucky. Our country is getting a little better.
My support worker from India is a trained physiotherapist – but only in India. I asked her what it is like for people with disabilities in her home country. She answered “Good if you come from a rich family who can pay for everything, but it is not like it is here.” When I asked how things would be if you are not from a rich family. She sort of frowned and answered “it’s not good. There are a lot of beggars in India who have disabilities. They beg for food – that is if they survive.” I asked “Do they die?” Her sad answer was “Yes”.
My Iranian friend at university has a cousin who uses a wheelchair. Her family is able to take care of her and her mother and family are very protective of her. She mentioned that access is very difficult in her country and the shops and streets make it very hard for her family to push her wheelchair. It is also a country where it is mandatory for women to wear a hijab. Very proudly my friend said her cousin asserts her dissidence by claiming she cannot wear it because of her disability. It seems that, at least to this point, she has been given some leniency.
My first holiday overseas was to Indonesia. I was 24 years old. Getting off the tour bus in a remote, small town square, I was rocked to my core. My naivety in my perceptions of what the lives of people with disabilities was like was rocked. I had assumed that everyone (wherever they were in the world), had a life like mine. I was so wrong. The bus was met by a small group of disabled people whose bone contractures (unlike mine) had not been surgically altered. They moved around on makeshift wooden skateboard type trolleys, sitting just a few centimetres off the ground. Prior to this, I had no idea what real poverty and deprivation looked like.
And so it is that I check my privilege. It is difficult to compare apples and oranges, a rich first world country and the countries outside of our “lucky country”. I complain about the NDIS (National Disability Insurance Scheme) not being perfect and not meeting all my needs and the needs of others in Australia, but then I remember what I have been told and what I have seen.
In 2013 the Labor Government legislated a trial rollout of the NDIS to give people with disabilities choice and control over their lives – much like those whose disabilities saw them eligible for MAIB insurance. People with disabilities not covered under MAIB due to their being born with their disabilities, were then afforded a level playing field with the NDIS.
The scheme has now grown to be Australian wide. There is obviously still work to be done to make the scheme sustainable and efficient, to stamp out corruption from nefarious, unscrupulous entities and to give people with disabilities dignity. However, we are well on the way to this being achieved. We must also be ever vigilant in ensuring that the conditions offered to people with disabilities in Australia are the best that our country can provide.
I acknowledge my privilege to live in Australia and be a participant of the NDIS, but I will never forget that many living in other countries do not have such fortunate lives. It is but by a quirk of nature that I was born here, and they were born there! The divide between us is unfair!
This is the first of my series of blogs on assisted technology that has been funded by the NDIS to enable me to enjoy my freedom, to get out and about and, most importantly, to achieve my goals.
For those who don’t know me, I am an above knee amputee with a type of amputation known as Hip disarticulation where part of the hip is also removed. I live in Melbourne, Victoria and am PDA’s Victorian Associate Director. I always been passionate about exploring the outdoors and nature and used to do a lot of hiking before my amputation.
Today I am going to tell you about my Adaptive Trike known as a Jee-Trike supplied by Living Concepts Australia and funded by the NDIS. It is built from imported parts and assembled at Melrose Wheelchairs in Oakleigh, Victoria. It has been fully customised to suit me and my needs. You can view their range of equipment at https://melrosewheelchairs.com.au/. With my Jee-Trike I can now get back to my bush exploring, but from a different point of view.
The Jee-Trike is known as an off-road, hand-powered cycle with an upright seating position and rear-wheel drive – which is a bonus as many other hand cycles are front-wheel drive which can be difficult to use with some forms of physical disabilities. It can be used by many people with different types of physical disabilities including those with quadriplegia. The Jee-Trike can be custom built to suit the user and can include options such as power assist to enable easier pedalling and brakes that can be operated by the elbow. Whilst the Jee-Trike is not suited to all physical disabilities, it can be adapted in several configurations.
There are many Hand Cycles available on the market. I chose the Jee-Trike as it was personally best suited and easy to modifiy for my needs. I have included a short video where I walk you through my custom-built option (please click on the link at the bottom of this blog to view). Special thanks to my support worker from Sonder Care Group for helping me film this video. Sonder Care Group is a support agency providing support workers to accompany you 1:1 (or other support ratios) and who make outdoor pursuits such as adventure camps, 4-wheel driving, mountain biking, snow and water activities and much more possible. With their help, choosing to attend events such as music festivals, cultural events and anything else that you might be interested in is in your control. Sonder Care Group will do their best to match you with the right support worker and the activities you like to do. Check them out at https://sondercaregroup.com.au/. It was with their help that I was able to visit and ride a section of the Great Southern Rail Trail in Gippsland Victoria – something I’d always wanted to do. We rode the section from Loch to Korumburra. I have included a slideshow of this ride at the end of this blog’s video. Most of the video was taken whilst on our most recent ride.
https://youtu.be/-z501xSH6g4
My support worker and I did the ride together and she had the right transport to carry the bikes.
Without the NDIS and assistance from my support worker, achieving these goals would not have been easy to achieve. I like to encourage people to get out there and explore your passions. With the right equipment, support and determination, your goals can be achieved. None of this would have been possible without the assisted technology and pushing myself. This may not be suited to everybody as each person’s needs are different. In a future blog, I will show you some of the other items that have made a huge difference to my life – including my everyday wheelchair. Watch this space.
I encourage you to subscribe to PDA’s YouTube channel whilst you’re checking out my video so that you don’t miss Part 2 of my blog and the many other exciting PDA videos in the pipeline.
The social model of disability
I have lived with what others call a disability all my life. I have Arthrogrophosis Multiplex congentia which is not very well known, with many doctors even needing to google it to understand what it is.
I use a wheelchair now, but for many years I walked around using a walking stick and long calipers (leg braces). However, the effort involved took its toll over time and I had to resign myself to the fact that I was now indeed a wheelchair user.
Things have changed dramatically for me. Whereas before I was able to open doors and even drag myself up a couple of steps, now I can’t because as we know wheelchairs can’t fly. Other things changed too. Where once I could go to a regular toilet (of which there are thousands, millions in the community), now I had to seek out accessible disability bathrooms (which are not as common). Even doing one of my favourite activities became a problem, op shopping! Do you know how many op shops are inaccessible? And don’t get me started about shops in general out there. Geesh! There is still a long way to go in the talks and provision of accessibility.
But even with challenges such as these, there are times where I can forget I have a disability. I am simply me and when things are going great, I forget. This is when the social model of disability is working perfectly. So what is the social model of disability you ask?
“The social model of disability seeks to redefine disability to refer to the restrictions caused by society when it does not give equitable social and structural support according to disabled peoples’ structural needs.“ (Pam Thompson et al 2012)
So basically, this explains why I forget I’m disabled at times. If I can smoothly traverse my day with no manmade obstacles to stop me, then I am not disabled. If I can get to a toilet, if I can go to the shops I want, if I can just go about my business like everyone else, then am I disabled?
It’s only when access is denied by obstruction that I become frustrated and rail at the unfairness of it, not just for me but for everyone like me.
Yesterday I got a takeaway coffee and googled the nearest fenced dog park. My doggies, my support worker and I were going for an adventure and some much needed outside time on this barmy (for Tasmania), sunny 17 degree day.
We arrived at a beautiful tree lined park with thick green grass and doggos everywhere bouncing around after balls and socialising with each other as their people socialised with the other humans. We parked the car between the trees to get close enough so that I didn’t have to traverse much of the rough gravely dirt to get to the gate, but then we saw the gate. There was a small step. Even though it was small, as I said before wheelchairs don’t fly. I could not enter. I was frustrated! I sat in the car and watched through the window as my doggos enjoyed the park. I could not join them. These are the times I feel disabled! These are the times when society has built infrastructure that excludes me.
Not being a shy flower, I instantly rang the council to point out this discrimination. The response I got was “gee that park’s been there for years, no one has said anything before this.”
I responded with well something needs to be done now.
The reason why no one has complained about the access issues in the past could be attributed to a number of reasons; the emotional labour it takes a person with disability to constantly ask for solutions to barriers takes its toll and there is only so much we as individuals can speak up about. Another reason, people with disabilities simply don’t know their rights – under anti discrimination legislation, access is not to be denied to PWD. It is your right to enter just like everyone else. The last reason could be a council issue. For all the access and inclusion committees put in place by councils these days, the work simply isn’t filtering down to the ground, like the actual bricks and mortar of the council area. Policy is one thing, but action is another.
The takeaway from this story is that we need to be striving to make sure access is not denied. The social model of disability is a reality, disability is a construct. That is, our environment makes us more disabled than others simply by the way things are built around us. I want to continue to live my life day to day forgetting I have a disability. For this to happen at the moment, a lot of people like me need to speak up about the issues and constraints in their communities, such as access to my local dog park. We should not be denied.
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