Wednesday, July 27, 2016

Naming and understanding


I am not proud of the following story.

When I was in grade school there was a girl who I believed was mentally disabled. This did not affect my interactions with her, because we never interacted that much. Somehow we never had a class together until 10th grade. For recess, I had already been burned by girls, so except for a brief period where I got into jumping rope I was either with my small and trusted group of friends or playing basketball.

Once we got into that first class together in 10th grade, she was really clever and funny. I'd had no idea. As time went on, I came to know many people with cerebral palsy, and I started to realize that's probably what she'd had, and it had nothing to do with intelligence. I believe that one class was the only one we had together, so we were probably never destined to hang out a lot anyway, but I always felt bad that I had assumed anything about her.

Thinking about it later, I realized that when kids were making fun of special needs students - which at the time we called retarded - the way they talked and held their hands was more reflective of cerebral palsy. This was not a mockery that I participated in, but I've seen it more than once. I suspect that when the R-word was thrown around, the people who were using it weren't too careful to understand the actual challenges being faced.

On a related note, I remember being really happy to learn about Asperger's Syndrome. I wasn't happy that it existed, but there had been people where there was something different about them that I couldn't place, and suddenly it made sense. It feels like it wasn't long after that we were supposed to move away from using that term, where it became preferable to refer to being on the spectrum.

I like understanding things. Sometimes being able to attach a name to something feels like a step in that direction. Okay, someone has described it, and figured things out about it, and this is what we call it now. That's great, until some knowledge of a condition becomes a way to write off a person.

When hearing "Asperger's" means the full set of symptoms - even if you understand those symptoms accurately (which is not always the case) - then it carries a set of assumptions about limitations for that person. But there is a spectrum, and you don't know the person's abilities until they are revealed individually.

That is true for many things that are broadly categorized as disabilities. Going back to cerebral palsy, I've seen a wide range of functions for both mobility and speech. Those are pretty easy to pick up on.

There are other conditions where it's harder. For people with Brittle Bone disease or Ehlers-Danlos syndrome, people often question their use of a wheelchair or a parking permit, but it's needed.

To some extent, learning more about possible conditions is helpful; these are things that can happen to people. Knowledge is not enough when there is an attitude of always wanting to be able to easily label and cast aside.

It may surface as derision when learning of a new conditions, like sensory processing disorder. "Oh boy! Everyone's disabled now!"

It may surface as impatience with individuals or attempts to meet their needs. It may appear as a polite dismissal of hearing more. Maybe naming things as we learn about them adds to that, because that moves it into the realm of disability and an able person who is not affected can choose to stop caring.

Despite that, I know that one of the most important things humans do is getting to know each other. Part of that can be "These things are hard for me, but these are the things I can do."

Everyone has things that are hard for them, and has things they can do.

When we put that together we can help each other.

1 comment:

vaxhacker said...

As someone for home Asperger's Syndrome makes the lives of people close to me... interesting... thank you for posting this.