It’s been a journey to discover that I am not like a majority of you. The impact of cerebral palsy on my body is subtle. Since I don’t know any other way of being, I have been observing the people that I live with, travel with, and work with, and discovering that I am different.
I don’t sew or knit or crochet
I tried that when I was younger. It never went well. I think it’s because my hands are not as functional as someone who has that skill. I’m okay with that because I can still write, and for me that is much more productive. I need to write. I used to say “Other people knit, I go to graduate school.” When I did that for a while, my career took a great leap forward.
Standing on the train
Living in the New York City Metropolitan area I do a mass transit commute. Through careful observation, I discovered that it was not difficult for most other people to stand on a moving train. It doesn’t hurt them. Standing on a moving train is painful and wears me out. I need to sit down when they start moving the train. (The only exception to that is really short trips.) That’s one of uses of my rollator.
Fatigue
Like most people, fatigue has increased in my life as I have aged. It is especially complicated for me as I am I am a high energy extrovert, and I have a passion for what I do. On an average work day I around 10,000 steps, without even trying.
Walking is harder than it looks
I hesitated to include this here, because in some ways I have always known this. I tend to be very aware that other people find my gait unusual. If I count success as staying upright and getting from one place to another, I manage that, most of the time.
I am different. Actually as I look at this premise, so is everybody who is reading this, regardless of whether they self-identify. Some differences require a supportive environment. What the difference is, will show what kind of support is needed. I need the infrastructure to work. Elevators are really important. Ramps are good. With a supportive environment I am able to produce at a pretty high level.
Am I disabled? To be disabled is to have functional differences with certain skills that society requires. Very few people will care about whether or not I knit or crochet. (I don’t usually think about that one, but I was with friends recently that began with swapping stories about knitting projects.). However, the walking/standing problem is an issue.
I have chosen to self-identify because it enriches my life. When the environment suddenly becomes less supportive I do need help. I think this is why I have chosen for my life the middle-road between the medical model and the social model of disability. There are things about me that are a variation from the commonly accepted norms. That is not really imposed by society. I am making a journey each day to more deeply accept these things. The pain comes when somebody prejudges my other abilities, for example, because I don’t walk in the same way they do.
I do a conference presentation that is based on talking about strengths. Everyone, regardless of how they self-identify, can do the following exercise:
- Name three things that you are really good it.
- Name three things that are challenging, but you still do.
- Name three things that are difficult enough that you try to avoid them.
When this is done in a group, turn the lens outward and ask people to do a think-pair-share. It’s also a good lens when dealing with anyone who has functional variations. It is meant to encourage everyone to see strengths, before weaknesses.
