Justifying My Disability

My disability is acquired and one that is sometimes referred to as “invisible”. My disability is caused by a progressively degenerative neurological disease. I am one of the 10% of people diagnosed with my illness before the age of 40.

I have Young Onset Parkinson’s Disease.

When I first started treatment it was like getting a renewed life. As time has gone on and my condition has progressed, the symptoms are less controlled by treatment I’ve had to make adjustments to my life & find new ways to do things that have become difficult to do.

Assistive technology and aides have advanced giving people with disabilities the capabilities to do things once only dreamed of. Yet, when I’m using these things I’m constantly finding I have to justify myself to people too ignorant and judgemental to take the opportunity to learn.

Last week I posted a story on my Facebook page about a group of young men loudly commenting about their opinion of my unjustified use of a mobility scooter because they observed me walk about 10 steps. “people like that who can still walk make a joke of disabilities” they said.

The next day a child of about 10-12 observed me stand up from my scooter to take a photo and exclaimed loudly to their parents “she can walk!” like I had committed some type of deception intentionally.

Elderly people stare at me in disgust when I ride around the supermarket. I get told on a frequent basis “That’s disability parking!” despite my permit being prominently displayed, before I’ve even been helped out of the car.

There was even the time a woman behind me when I was in a shopping centre on my large mobility scooter on a public holiday loudly stated “They shouldn’t be allowed to bring those things in here on days like today”.

I have 2 mobility scooters, serving different purposes each. I am no longer allowed to drive. I have a walking stick and a chair in my shower.

I’ve simplified my eating habits so cooking is achievable at times but my carers do most of it for me. An app on my phone reminds me when and which medication to take and when it needs to be ordered and picked up.

I use drink bottles to drink from most of the time because I spill or drop my drinks.

There’s even a voice activated emergency app on my phone in case I am injured in a fall.

All of these things contribute to me managing my life with a disability. It should be celebrated. Instead it’s questioned and interrogated, judged and discussed by strangers as though it’s not justified for me to use these things.

An amputee can put on a prosthetic limb and run and the world stands on the sidelines clapping calling them an inspiration. They’re doing the same as me. Using the tools available to make their life manageable but, we are treated differently.

Is it because people view their physical difference as suffering? Why do people with disabilities need to show they suffer to be justified in having assistance?

I haven’t lost my legs. Instead I have legs that cramp with rigid muscles that refuse to take orders from my brain. I have hands that move when I don’t want them to and freeze stiff when I need them to move.

There are so many others like me. We just want to live our lives as best we can while minimising the struggle to do so. We’re just doing every day things most people take for granted but because it’s not inspirational for some people, we’re forced to endure and at times even be confronted by their accusational judgement. Made to feel bad just for trying to have a better life.

When I tried to explain to those young men that day that 10 years ago I’d have run circles around them, but the degeneration of my condition now means I can barely walk 100 metres with collapsing in a heap and I will keep degenerating until I can’t walk at all, one of them replied “we all degenerate”.

Yes we do. Just some degenerate before their time. How privileged to never have to see that kind of suffering.

Rather than expecting people to justify their disability, try being supportive. Educating your ignorance might be handy for you if you ever find yourself in our position.

I can assure you, no one, especially me, expects to be diagnosed with Parkinson’s Disease. Today in Australia 33 people will be diagnosed. It could be you.

5 thoughts on “Justifying My Disability”

  1. Friday no matter how many times or how many ways its heard of how they see us, you never get use to it but hold your head up high as you inspire me to be better and have helped me along the way plus reminding me how important it is to keep sticking up for your rights no matter what. Thanks for always being there and inspiring us all.

  2. Hello, Thank you for putting pen to paper and expressing how frustrating it is to have Young Onset Parkinson’s disease. I too have this and I have now had ‘P’s’ for over 15 years. I too am unable to drive anymore, I too suffer from dreadful, painful dystonia’s with toe curling. I try to walk everywhere but on rare occasions have used a mobility scooter in a store who provided one. I too get those looks and comments from people when my children park closer to the shops and I emerge from the vehicle using a disability sticker.

    There are another two frustrating matter I’d like to raise. One is trying to find a chair anywhere in the supermarkets or major retail outlets when my medication isn’t working (in Parkinson’s terms this is referred to as an OFF episode). Unfortunately, my medications just don’t last very long and it’s like a battery quickly draining and going flat. My other gripe is that I live in the Nation’s capital city (Canberra). We don’t have even one Parkinson’s nurse, nor one Movement Disorder Specialist in Canberra to turn to for advice. We did have one Parkinson’s nurse about a year ago. About that time, I rang to try and get an appointment with the nurse and was put on a long waiting list and told that the Parkinson’s nurse had left and they were trying to find a replacement! I rang again last November to find the position was still was vacant and here we are in July the next year and there is still no Parkinson’s nurse in Canberra. As well, there is still no Movement Disorder Specialist. The closest is in Sydney. That’s OK if you can drive, but I can’t so it’s a lot more difficult.

    Anyway, I was so happy to read that it’s not just me that has to endure these unfortunate episodes. So thank you for speaking out for those of us that are suffering.

    1. You are so not alone. There are thousands of us. Everything you’ve described I share the frustration of. I’ve reached the point where medications are becoming ineffective so I’m experiencing all those symptoms from the start in threefold. I’m so disappointed to hear Canberra no longer has a nurse. We’ve been fighting for them up here. I even forced myself to see my federal Minister Peter Dutton to beg but he told me there was no money in the budget then he gave $7M to prostate cancer nurses. What he really meant was there’s no money in the budget for us. We aren’t seen as dying from PD so there’s no need to help us. Sad really. They’ve no idea how much we die inside.
      Keep up the good fight.

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