My friend and I are both in wheelchairs and our disabilities are nothing alike
For today’s post, I teamed up with my friend Sarah to highlight just how different disabilities are from person to person, even between two wheelchair users. Lots of people who have limited or no experience with disability in general tend to lump all wheelchair users together and assume that our experiences are pretty similar when that’s really not the case. Sarah and I are the same age. We went to school together, and both use wheelchairs but our experiences are drastically different.
First of all, she has spina bifida whereas I have congenital muscular dystrophy.
There’s a lot of different reasons a person could be in a wheelchair, from a condition or birth defect like Sarah to a disease like me. It could also be things like temporary injuries or chronic pain. Our disabilities are completely different. Mine is a degenerative disease, so it will progressively get worse over the course of my life whereas her Spina Bifida will not worsen over time. My disease affects my muscles and her disability has nothing to do with hers.
It’s a good rule of thumb to not assume you know anything about a person’s health or disability just because they use a wheelchair. Actually scratch that, you should just avoid assuming anything about someone’s health period. Regardless of anything you notice about their outward appearance.
While we’re both wheelchair users, she is ambulatory and I am not.
Although Sarah uses a wheelchair, she can also stand and walk for short distances as well. Just as you should never assume that someone can get up out of their chair, you should never assume the opposite either. Ambulatory wheelchair users exist, and unfortunately they face a lot of judgment and harassment from people who cry “faker”.
Different disabilities require different degrees of medical care.
Luckily, I’ve required little medical care, at least compared to many other disabled people I know – including Sarah. I spent a lot of time in hospitals as a kid and had one major surgery. As an adult though, I mostly just get a checkup once a year unless a problem arises. Sarah on the other hand has had dozens of surgeries and actually is recovering from one right now. She also has physical therapy and in general has to see a lot more doctors than I do.
The reason why I include this is because there’s a misconception that all disabled people are constantly going to see doctors or are ‘unhealthy’ but that’s not necessarily true. There’s also a weird level of curiosity surrounding disabled peoples medical history. It’s real uncomfy in general and something that needs to stop.
Like I mentioned, Sarah benefits from PT whereas I do not.
Technically, doctors would probably disagree with that statement but given the nature of my disease (it worsens over time) I never felt like physical therapy was worth the effort and discomfort it causes. I did go to PT as a kid, but hated it and never kept up with it as we didn’t see any real benefits for it. There are things they can do to try to slow things like muscle contractions, but it’s nothing I’ve ever bothered with.
I know that Sarah has gone for PT on a fairly consistent basis in the years that I’ve known her. But in her case, exercise and strength building has actual value and benefits her. She also has a lot more mobility and physical abilities in comparison to me.
Because Sarah has more mobility, she also has more independence.
She can shower, go to the bathroom, get in and out of bed, and basically take care of herself. I, on the other hand, need significant help with all of those. I can’t get through the better part of the day on my own most times because I need help with so much so often.
Sarah often faces the assumption that she can’t do anything on her own. In reality she can be fairly independent in many situations. That’s not to say that she never needs help, but certainly less so than me. When helping disabled people, the best thing you can do is ask them and respect their wishes when they tell you what they do or don’t need.
I say this all the time, but it always bears repeating that disability is not a one size fits all.
Sarah and I have a lot of similarities, but our experiences growing up disabled have been far from the same. I know from experience that she would hate it if people tried to give her the kind of help I need day to day. And I would be lost if I tried to do the majority of things she does on her own. Both of us have run into problems due to well meaning people trying to help without communicating with us first.
Everyone is different, even with the same diagnosis but definitely with different ones. Wheelchair users are not all the same, and whatever you think you know, there’s a good chance that you’re incorrect. Those assumptions can lead to uncomfortable conversations or at worse, physical harm to someone if you act on the incorrect information.
If you’re interested in learning more about spina bifida or Sarah in general – I definitely recommend you check out her blog and give her a follow. She’s a gem.