A tweet came to my attention recently that I feel I should address.
However, I must issue a warning that it hit a nerve (or more like stomped on it) for me. It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.
Question 4 #CPChatNow do those who r high functioning have obligation to reach out to those who are severely affected by CP r we 1 community
— Gabriella Burman (@GabriellaBurman) April 7, 2016
Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.
As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.
In short, I do not feel an obligation to reach out to those who are more severely effected by CP.
Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.
If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.
We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.
The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.
In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP
There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).
I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”
My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.
I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.
I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.
I need to put on my own oxygen mask before I can help anyone else.