Perhaps it seems obvious but wheelchair users are individuals with a diversity of feelings, perspectives and ideas. This still holds true for wheelchair users who have CP too. No matter what commonality you can wrap around a group of people it is still important to honor and acknowledge them as individuals.
This point was highlighted for us today when we took Maya to her favorite local restaurant. The owner is someone we have chatted with before and today he mentioned being a part of a local upcoming racing event where wheelchair users are pushed by a partner runner. It’s a fantastic effort and experience for many. However, he assumed that as a wheelchair user Maya would automatically enjoy participating. I said a couple of times that we have offered this opportunity to her and even tried once to have her ride during a race I participated in several years ago. I explained to him that she just doesn’t enjoy the experience. He didn’t get it. He went on to say why other wheelchair users liked it etc. Clearly, he was well-intended and we tried to explain this to Maya.
When he walked away Maya became very angry. Then her anger turned to tears and she cried very hard. It was the kind of cry that makes the most stoic of parents want to cry as well. She said, “It isn’t fun for me to ride in a race.” “I want to be the one running or using my walker!” She went on to express even deeper feelings and her point was that riding in a race was an intense reminder of what she couldn’t do but would like to. It hurts to even recount the experience here.
So, I guess my point is that it’s easy to assume that what is fun or appealing for one wheelchair user must be fun for all, but that is not the case. And over time I have learned from Maya that her reason for saying “No” to an activity may have feelings behind it that I have not considered. Maya offered an important reminder of this today. When the owner came by our table she tried explaining her feelings to him. I don’t know if he understood what she was getting at, but I was proud of her for sharing her point of view.
Not easy stuff–for any of us.