The Wheelchair Decision

Discussion about anything and everything related to assistive technology.
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PaperVoice
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Joined: 2 years ago

The Wheelchair Decision

Post by PaperVoice » 2 years ago

My name is Jeremy. I'm 17 and have mild-moderate spastic diplegic Cerebral Palsy, as well as moderate-severe Tourette Syndrome. I'm a high school senior. As I think about the future and prepare to go to college, my mobility is an obvious concern. I haven't used a wheelchair since I was very young. I use a single forearm crutch when walking or standing for a long time or on uneven, slippery, or unfamiliar terrain, as well as navigating stairs which do not have handrails. But as I consider what life will be like on a mid-sized college campus and how my mobility has changed, my father and I have begun to consider the possibility of a different type of mobility aid, like a wheelchair or mobility scooter of some sort- we even joked about a Segway- but my mother is staunchly against the idea. On the contrary, when I received a handcycle, she was excited about how it might help my mobility while on campus. I realized this is because in her mind, deciding to use a wheelchair, even part time, is giving up.

I'm well aware that in the medical community and for parents, walking is seen as the holy grail for those with mobility disorders which impede it. If you can't walk, you should strive to, and if you can, you should do so whenever physically possible, pain and fatigue be damned. And I think this is why she is against the idea- she hates the idea that I would be forfeiting my mobility. Because it's a handcycle, a bike, it's perceived as something one uses to be active. A wheelchair is a symbol of disability, and when you're an ambulatory wheelchair user, it's seen as giving in or giving up.

My mother is embarrassed in a way of the fact that my disabilities are visible. She constantly worries about how people will perceive me, and how people will perceive me as an extension of her. I was taught how to walk differently during years of physical therapy, but I choose to not always use the techniques I was taught simply because of the added effort, energy, and concentration it requires. When I'm not using the techniques I was taught to alter my gait, when my limp is more prominent and I am slower, she calls it my "disabled walk". When I'm using every technique in the book in order to keep up and my limp is somewhat reduced, she calls it my "non-disabled walk". She says she doesn't like it when I "walk like I'm disabled." She also says that it's rude for me to expect people to slow down and that "the speed at which I walk is annoying." I've internalized a lot of the ableism she has thrown my way, making it even more difficult to cope with my disabilities and to consider what mobility aids may help me best in the next phases of my life. While I know that a wheelchair could be helpful for me, I struggle to accept it enough to think about how I would go about the pursuit of attaining one. I worry about upsetting her. Because of everything she has said, I worry that the professionals I work with in the process will not take me seriously. I'm not sure what to do.

Coll
Posts: 62
Joined: 3 years ago

Post by Coll » 2 years ago

Jeremy,
Instead of a wheelchair, a small mobility scooter might be the thing. I know that many able body students use them to make it across campus at the university I taught at. There are some that fold up and are light weight.
I'm really sorry that your mother has acted ashamed of your disability instead of proud of your ability to over come it.
As far as the idea that you keep walking inspite of the pain, that's a bunch of poppycock. It is my belief that we shouldn't suffer needlessly. Yes I do push myself to maintain my ability to walk but if I'm going somewhere I'll promise you that I'm on my scooter because I want to get the most out of the experience, not suffer through it.
Take it from an old lady, life is too short to endure pain needlessly. Now go get that education and experience collage.

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