I was diagnosed with Friedreich’s ataxia (FA) as an 11-year-old. When I was about 15 or 16, the reality of my diagnosis hit me and I found myself struggling to cope with it. As far as I was concerned, my life was never going to amount to anything worthwhile because of my newly discovered disability.
It took me another 10 years to work out that this was an outright lie — my life is worthwhile and I’m glad to be here still. However, I know there is still a lot of “disability shame” out there when there shouldn’t be.
A lot of disabled people still struggle every day with identity issues to the point that they feel like a constant burden. Requiring help to do daily activities is humiliating and degrading, but relinquishing control and submitting to your damaged body every day is torture. Facing these things daily on top of dealing with everything else disabilities encompass is usually enough to send people into a downward spiral of depression, and it’s not that easy to push through.
Having other things to focus on such as work, whatever that may be (even if it’s unpaid), helps a lot. It lets you focus on what you can do regardless of disability. However, it turns out Australians with a disability are more likely to be unemployed compared to those without a disability. In fact, only 36 percent of people with a severe or profound disability are currently employed. As a result, people with a disability are more likely to run their own business.
Education also plays a large role in the severity of one’s disability, and it’s something that is often overlooked in our society. Thirty-six percent of people with a disability have completed year 12, compared to 60 percent of those without a disability. Only half of those disabled schoolchildren receive additional support, be it in the form of support workers or access to counselors. The sad truth is that 25 percent of people with a profound or severe disability haven’t completed year 12.
All the usual specialist advice to family members of a severely disabled person is to forget about mainstream schooling and focus on finding a “special” school for disability. “Special” schools are not known for their diverse education programs. They tend to focus on life skills — like how to boil an egg or cook two-minute noodles. So even if someone with a severe disability has the intellectual capacity to learn, they aren’t taught anything different from those with an intellectual disability.
It makes me wonder how the blind and deaf author-activist Helen Keller would have turned out had no one bothered to show her how to communicate or offered her the chance to have a decent education from a young age.
A friend of mine recently informed me that as a teacher of young primary school students, she was told that after a few years of work, she would no longer be eligible for jury duty. The implication was she was spending so much time with kids that her mental capacity to make decisions as an adult was affected. The environment in which she chose to surround herself would ultimately change the way her mind worked. This story stands out in my mind so much because I can see the parallels between severe disability and lack of mainstream education.
My FA has been in the more severe stages for a few years now. I can’t help but think about who I would’ve become, or more to the point, how dumb I would’ve been, had I been born with a severe disability rather than a degenerative one that hit me hardest later in left. Who would I be if I had been slotted into an inferior category of people at a young age? It’s because of my education that my disability doesn’t define who I am, and that is something I will be forever grateful for.
My education means I get to decide how much of a limitation I will let my disability be, and no one else.
Note: Friedreich’s Ataxia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.