I recently read a viral Twitter thread by Toronto writer Erynn Brook. Going home late from work, she encountered a woman on the train who had a seizure disorder. As I read the story of what happened that night, I thought about Max being on his own as an adult, especially when I got to her last few lines.
This, right here: "It's a story about human needs, through the lens of disability, and how accessibility is not the same as acceptance or community care."
Yes.
As the mother of a child with disabilities, I have often advocated for the accessibility Max needs and demanded the respect he deserves. We are lucky to have Team Max—the family, caregivers, therapists and teachers who are there to lend him a hand and enable him to do things on his own. But someday, when Max is an adult, I am hoping he will be able to do things independently. At the same time, that wish absolutely terrifies me as it means he could well be in situations where he may need assitance from strangers.
Of course, we will make sure Max can communicate his needs and that he has a seizure plan handy. The woman on the train had a laminated sheet of paper with her seizure plan. Max has his speech app (and whatever technological advancements may arrive in the coming years). But will people know how to respond if, say, Max needs help manipulating a door knob? Or tearing off a wrapper off of food or doing any number of everyday things that involve fine motor skills?
I can only hope he will meet up with people like this woman who care, who accept and who understand. But hoping just won't be enough for his reality.
I am an adult with cp. I don't have seizures however I do have fine motor problems like max but fewer Im assuming because my left side is completely fine. I find that when I need help there is somebody there to help me whether it be a friend family or others sometimes its a stranger. The problem is I do not like needing help. I am getting better at it but still it frustrates me. I see that a lot on the cerebral palsy forum on facebook. As I get older I realize that having some one help me get food at a buffet style picnic or luncheon or potluck where there is no room to set a plate down at is easier than dropping it and food going every where so I ask for help. But I have yet to learn that getting help with the buttons on the vest I have to wear when I greet at a mental health clinic is also ok every time I have to do that and I button the vest it takes forever and the muscle spasms I get hurt but I do it myself independently like I want it. The moral of the story is that in his life there will be people around to help a lot of the time He has to be humble enough to ask and accept help which I am not yet at least.
ReplyDeleteVickie, it is heartening to hear your p.o.v., thank you. While Max does willingly accept help from people he knows, it has yet to be seen whether he'd feel comfortable doing so from strangers.
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