On this journey with my son's disability, I've had the pleasure of getting to know Nick Ryan and his unusual perspective on cerebral palsy. Ryan is training to become a special needs teacher in Ohio. He experiences mild ataxic cerebral palsy and says he wouldn't change it even if he could.
When March came, he noted with annoyance all of the green Cerebral Palsy Awareness Month ribbons flooding his Facebook feed. I wondered if we could instead call March Cerebral Palsy Pride Month and thought this Q&A might be a good first step in challenging some assumptions people have about cerebral palsy.
Your Facebook profile photo is an "I ♥ CP" logo in the style of "I ♥ NYC." What do you ♥ about cerebral palsy?
I love CP because it is part of me and I love myself. And I love others who have it and CP is part of them, so I love it. Like a friend of mine, who is a mom of a little boy with CP, once said: “If you going to love someone who has CP, you have to love the CP itself.” CP plays a major part in shaping a person who has it. I would not be the same person without it. I also find great beauty in CP — the way a person with it walks, the way a child with it smiles, the strength and courage we all tend to have — it's just beautiful to me.
What are you most proud of about your CP?
I'm proud of my CP because it makes me part of the diversity of the human species. I feel it is important to have many different types of people on the earth. In my view, it is important to be proud of who you are and what you are. This is especially important among minorities. Take a look at African Americans or Latinos or GLBT people — they did they not make any real progress towards equal rights until they developed a sense of pride and community among themselves. I feel that is really missing among people with CP and that is really holding us back when it comes to gaining equal rights.
How has CP enriched your life?
It has allowed me have a different perspective on things. I have to work a little harder to get things, so I value them more. It has also given me a strong sense compassion and empathy. CP has allowed me to meet some great people. I love meeting other people with CP — listening to their stories, their experience — it really does something for me.
How do you experience CP? What does it feel like and what is your level of function?
I find describing the CP experience to be difficult because it is all I have ever known. It would be like if I asked a typical person what it is like to be typical, they would find it difficult to put it in words that I would understand because they really don't know what my life is like. CP is just life to me. If you want to look at it from the perspective of functionality, I am relatively high-functioning compared to others with CP. The area where I am most affected is my speech; I have the typical CP speech pattern. I am able to walk independently, my CP does affect my gait somewhat. I have issues with my fine motor skills and continence.
Are you against a cure for CP? Why?
Yes, I am against a cure. When people say they want to cure CP, to me it is like saying that you want to cure Judaism or cure people of being African American. It is the elimination of an entire group of people just because they are different from the so-called norm, a group of people that contributes to the richness and diversity of this world like all groups of people. Also, people underestimate the psychological impact a cure would have on a person with CP. You are changing a major part of who a person is. A person who would received this cure would have to create an entirely new identity.
What is your biggest pet peeve about the way society at large talks about CP?
What really drives me crazy is to hear CP talked about like it's this nasty, evil illness like AIDS or Cancer — something to be hated, something to fight. After almost 30 years of living with the condition, I can tell you it's nothing like that. This type of talk is not only untrue and annoying, it is dangerous. Children with CP hear this and feel like they are broken, that they have to do everything they can to overcome their CP. So they engage in an endless war against their own bodies that is both physically and psychological damaging. Their parents, pressured by the same societal view of CP, encourage this and in some cases force the child into this. The parent is made to feel that they are not being a good parent if they don't push their child to gain as much abilities as they can. The end result of this is an environment that is unhealthy for all involved.
How do you think you would react if you had a child diagnosed with CP?
You don't really know how you going to react to a situation like that until you're actually in the situation, but I don't think it would be a big deal to me, I've been around CP and other disabilities all my life — they are normal. Of course I would want to make sure that my child felt loved and accepted for who they are, whether they had CP or not. If my child had CP, getting them a way to communicate would be the top priority, whether it is through speech or an AAC (Augmentative and Alternative Communication) device. I would want most of his/her therapy to be play-based and child-directed. I would let the interest of my child guide what we do as far as therapy. I would make sure that he/she had what they needed to get the most out of life, whether that be a wheelchair, walker or whatever. Most of all I would want to be happy, happy about having CP, happy about what they are doing with their lives, just happy.
How do you think you would feel if you had a stroke or brain injury now and lost some of the function you currently have?
This is another question I can't give you a for-sure answer on. I'm sure there would be a period of adjustment while I would get use to my new situation and I'm sure I would feel sadness for my loss. But over time I think I would adjust to things and find a way to be happy. That just the type of person I am; it is in my nature to try to make the best of things.
What would you most like people to know about what it's like to live with CP?
That the quality of life of person with CP is more greatly impacted by the environment they are in. If you put a person with CP in an environment that is loving and accepting, that has proper accessibility and technology, they going to have a good life no matter what functioning level they are on. Instead of changing people with CP, we should be focusing on changing the environment.
I hope you found this post thought-provoking! Feel free to share using the icon buttons below and if you haven't subscribed to my RSS feed, liked me on Facebook or followed me on Twitter, there's no time like the present! Oh, and the AWESOME board book Dark & Light: A Love Story in Black and White is available here and all profits go towards my son's medical needs.