And so, today is Cerebral Palsy Awareness Day, which is part of Cerebral Palsy Awareness Month. Not to be confused with World Cerebral Palsy Day, which is also a thing.
Another thing is this. I’m very aware of CP, thanks for asking.
I will be the first to tell you that I am mostly disabled by inaccessible environments.
I could also tell you that my most-asked question is ‘When was your accident?’
Sometimes, if I want to mess with nosey people, because really a person’s medical condition is nobody’s business, I’ll say I was in a motorcycle accident.
But really, I have CP. And I’m aware of it every day.
There are different types of CP, and mine mostly affects my legs. With the added bonus of excellent peripheral vision which is really helpful in other areas of my life. No complaints.
The first thing I do in the morning is swing my butt into my wheelchair, which is the instrument that makes everything else possible. I love my wheels. I’m more independent on wheels than I am walking, so I decided before I went to University that I’d be a full-time wheelchair user.
I don’t think of the physical side of CP every day. I know my body very well, and mostly we are friends.
What I am confronted with every day is inaccessibility, ablism, and Isla’s toys on the floor that I can’t pick up without a grabber.
There’s also the fact that I need help with a shower, and that I can’t drive a car due to a fright reflex that my real friends can have hours of fun with.
When I’m tired, sometimes I tell myself to ‘Move this foot’ out loud, because the point is the message from my brain don’t get to my feet.
And after long car journeys, I promise you I cannot move.
If there are no rails in the bathroom, I will sit there for hours trying to figure out how to transfer from one seat to the other without my back giving out.
I will have an existential crisis at 1 in the morning, because there are no rails in the hotel bathroom, and I really need to pee. The last time that happened, I ordered portable grab rails for my next trip.
I’ve started to think recently about what happens to older people with CP. There’s a lot of early intervention, but not a lot of talk about maintenance for adults.
CP doesn’t get worse, but I think I’m becoming aware of getting older, and have a few extra aches and pains that get worked out with sports massage. And I should probably go back to swimming. Or um, walking around the edge of the pool.
The last time I saw a physical therapist, I was pregnant with Isla.
The PT couldn’t do much for me that I wasn’t already doing and sent me home with an info pack. On MS.
In fact, a lot of the interestingness that comes with my CP was highlighted while I was pregnant.
Take this conversation with my OB:
Her: Midwife says you want a C-section.
Me: Yes, please.
Her: Why?
Me: I don’t know how my muscles would react. This could happen one of two ways. I push, the kid gets stuck, and you have to go in, anyway. Or, I push and the kid shoots across the room.
Her: CP doesn’t mean you can’t labor. You could try.
Me: How about you try?
In the end, Isla was indeed a sunroof kid, and I wore her in a baby-carrier all the time, because I couldn’t drive my wheelchair and hold her at the same time.
She still fits on my lap. We check periodically.
So, no. I don’t need to wear green to be aware of CP. Like a puppy on Christmas, CP is for more than one day.
It’s good that we have today, and this month though, if it highlights the need for accessibility and equality every day.
More of my thoughts on disability can be found here.
Do you have Cerebral Palsy? Share some life hacks in the comments.
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15 Comments
“Sunroof kid.” I am so borrowing that.
I hope to use it again as well, ha!
It’s like so many conditions out there… A day of awareness isn’t going to necessarily help an individual, but it may give another able bodied person more food for thought regarding that disability.
Take Friday… The kids are being asked to wear odd socks for Downs syndrome… At least it is getting children thinking and being more considerate ?
I would so agree with that Ritu, but question whether the kids are more focused on which socks they are going to wear than what it means to have Downs Syndrome. Is there any awareness of Downs Syndrome passed on to the children during the day. How do they associate odd socks with Downs Syndrome? (Please don’t think I’m knocking the idea and if it helps raise awareness then I’m all for it). Do you have any pupils in school with Downs who would be willing to talk to their classmates about what Downs means to them? That may have more of an impact (they could still wear odd socks 🙂 )
Honestly, Gill, I question why too… Odd socks… So are Downs Syndrome sufferers odd? We don’t have any DS pupils so an assembly means there is raised awareness, but will it stay with them? ?
I love you, but disabled people are not sufferers. That’s the point of awareness of any kind.
You know, I was struggling to find the right word, didn’t want to say sufferers! I totally understand what you are saying, I just can’t get my word right!!!
Blame WIP brain, ha!
Yup, that’s it… And I’m tired!!!!
Great post, Lorna. I love how straight-forward you are in how you explain the realities of having CP. I think it’s so funny that you sometimes mess with nosy people who think they have the right to ask you “what happened”?
Whose idea is all this awareness days? For goodness sake, who are they for? We have Cancer Awareness days all over the place. But why? I’m very aware I’ve got it. I don’t need an awareness day to remind me. I suppose I could dress up as a giant colon – that should get me some attention I guess. We should ALL be aware of disability, every day whether we are disabled or not. Not just on one day of the year…….
Lorna, your wonderful blog does more to highlight disability, access issues and how it affects you, than any awareness day.
My computer students are learning about the Civil Rights Movement, but their classroom teacher is also covering Disability Rights. I am so glad because that one often gets shoved aside in favor of teaching to the yearly state exams.
We talked about your house-hunting, and how “accessibility” has different meanings to different people, and realtors don’t always listen or get it right. Can a wheelchair fit through the bathroom door? The house might have wide doorways, but are there three steps on the front porch that have to be navigated? It’s something most of them never have to think about, but they can start learning to.
I agree that disabled folks are only hindered by ableist, inaccessible environments. We need to do better! Yes, I am aware of CP, yes, I am aware of Down Syndrome, yes I am aware of lots of other physical issues and disabilities, but if we aren’t following through and teaching about how those things affect a life and how we can make those lives better, what is the point? Stepping off my soap box now before I FALL off.
(this is Heather from Becoming Cliche)
Kinda cool that my blog is being discussed in schools/staff rooms, ha! Thank you and your fellow teacher for also covering Disability Rights which are Civil/Human Eights.
Exactly. The questions I pose to them are “What did the law change?” and “What battles are still being fought today.” Because we think that things end with laws being passed, and that isn’t how it works at all.
Today we did a LOT on disability rights, and a kid asked me “What is autism?” GREAT QUESTION! So my next lesson is going to be “What is Autism? What is CP? What is Down Syndrome?” “What is epilepsy?” etc so they start to understand other people and how they are different, but also how they are very much the SAME. Disabled, PoC, women, we all want the same thing – fair and equal treatment, not just under the law, but out of human decency.
HOW ABOUT YOU TRY?
OMG, I love you. This is amazing.