“World Cerebral Palsy Day” Makes This Woman with Cerebral Palsy Want to Gag
October 7th was World Cerebral Palsy Day!
I’ve been living with cerebral palsy for my whole life. While I'm all for the spreading of awareness and dedicated advocacy, I find the concept of World Cerebral Palsy Day to be misguided.
Cerebral palsy (CP) is a neurological disorder caused by a lack of oxygen to the brain just prior to or during birth. Symptoms of CP cover a wide breadth. On the more severe end of the spectrum you have extreme muscle spasm, possibly an inability to move on your own at all, as well as difficulties speaking and swallowing. These symptoms can cause serious physical problems and can lead to many health-related complications. But this is not every scenario. CP is not degenerative by nature; symptoms can be managed, limitations accommodated for, physical difficulties compensated. Is it easy? No. I probably burn more calories getting up and getting dressed in the morning than the average person does by lunchtime. But I have a life, and I do what needs to be done in order to live it.
These days, we are saturated with more information than we know what to do with. Facebook, Twitter, texting… everything designed for information sound bytes and very rarely an entire picture. Remember the good old days when relationships were private matters, back when love could not be quantified by public declaration? Friends were not pictures on a computer screen; they were living, breathing humans between whom connections were formed. Maintaining a friendship required mutual work, respect and love, not the mere "liking" of a status or photo.
As far as I can tell, World Cerebral Palsy Day has turned CP into something that it is not; most people do not know enough to be able to distinguish what it is from what it isn't. The language I see on social media is very troubling to me. People talk about CP like there needs to be a cure. CP isn't a terminal disease; people can live with it, people do live with it. Life with CP is complicated, life with CP is painful, life with CP is exhausting. But it is life. I don't have a terminal illness, no degenerative disease; I don't want a cure. I want there to be less stairs, I want the winters to be less brutal, I want to be able to use the bathroom everywhere I go. I want to depend on people less, not to feel like I am sometimes left with no choice but to defend my personal privacy and dignity in a fight to the death. My life doesn't depend on a cure. This type of rhetoric does more harm than good, stripping people of dignities by sending the message that to the rest of the world, your life is so fraught with challenges that you're being applauded for having the strength to get out of bed. When that's the tone of public "support", any sane person would find it depressing after a while. I don't have a terminal illness; please do not talk about my disability like it might as well be one.
And treatments! Two words –physical therapy. If my parents had taken the doctor's prognoses' as the final word, I'd be in the corner drooling. With early physical therapy intervention, there is no reason for skills not to develop, to get things to a place where they are manageable. Most people with CP will never run a marathon. I stopped rigorous therapy as a teen, when it became less about furthering functionality and more about maintaining what I had. Without hours upon hours of my childhood being spent on perfecting proper posture, shifting my weight, doing difficult fine-motor tasks, being forced to do things with my right hand, wearing God-awful leg splints and being forced to walk until I could barely hold myself up in my walker, I wouldn't be able to do anything I can do now.
True awareness and genuine understanding do not come from the misguided rhetoric slamming us on all sides. Genuine awareness comes from people paying attention; it is the result of good old-fashioned compassion.
My friend of over a decade, who comes with me to a Catholic wedding ceremony and says "Hey, what if I don't want to stand up? I mean, you can't. So, what if I choose to stay seated out of respect for the fact that I'm there with you?"
My friend from university whom I hadn't seen in several years because he's been teaching on the other side of the world, having an event at a bar with stairs who says to me, "I feel awful. But if you can get there, I'll come out and carry you inside myself and carry you out at the end of the night. If you can get there, I will make sure you're fine." He did, and I was; seeing him brought me immeasurable joy.
One best friend planning a surprise party for another best friend saying, "I will find a restaurant where you can get in, and use the bathroom. Accessibility should not be so hard to come by. You should be able to use the bathroom!" He apologized for his lack of foresight saying, "When I think of you, I don't think of you as being in a wheelchair, so sometimes the accessibility stuff doesn't occur to me." My response? "Good! Never think of me as just being in a wheelchair."
I was raised by parents who taught me that my life would be challenging, but that my life is worth living. I'm just living my life. Luckily for me, my friends go above and beyond. They appreciate the struggles I have but they never belittle me. With them I can get infinitely farther than I would on my own; when I have done as much as I can, they're ready, able and willing to carry me the rest of the way (literally). And I'm okay with letting them. These people are my heroes. Through genuinely caring about me, they are cognizant of things on a level that I will never cease to be amazed by. If I lived in the bubble of "I have cerebral palsy, my life is so hard! Please applaud my heroics!”, the amazing people I mentioned above would be no friends of mine.
Next time someone expresses heartfelt wishes that I be healed, or tells me how brave I am, I might say, "I'm not sick. I don't need to be healed. If you really want to help me, I would gladly accept whatever generous monetary donation you'd be willing to make. Disabilities are expensive! And despite more than one post-secondary degree, I still don’t have a full-time job! Help a poor lame girl out!"
Awareness about cerebral palsy will always be important, and the mission to educate should never stop. I applaud the good intentions; I criticize the method of delivery. Society needs to stop making bandwagons out of important causes and issues worthy of greater public consciousness. If you're going to inform the world of something, make it your mission to fully inform rather than glorify and distort.
Layla Guse Salah