What does having Cerebral Palsy entail?
Inability to walk without a walker. Movement issues in all limbs. Speech is affected. Chronic pain.
What are your thoughts on the term “special”?
I do not like it. I am not ‘special’ I was born with severe brain damage, that’s it.
What type of Cerebral Palsy do you have?
Spastic quadriplegic
How severe is your disability?
I would say its severe, but I am able to live a good life mostly. I can still go out and do most things that I want to do.
Do you have other related conditions?
Chronic pain, GERD, depression
On a scale of 1 to 10, how much impact does Cerebral Palsy have on your life?
10. Every day I am affected. Some days are good, some are bad, but it is always a struggle.
How does having Cerebral Palsy affect your day-to-day life?
It is difficult to have a sense of freedom and independence. My daily life is a lot slower than most people
Have you experienced any sort of stigma for having Cerebral Palsy? Did that take a toll on you? How did/do you deal with it?
I was probably socially isolated a bit but found friends eventually. People sometimes assume I have mental issues as well. Not much I can do other than deal with it and continue on with life.
What’s your preferred choice of transport or assistance?
Car/Uber/Train
Do you ever feel like people underestimate what you’re capable of because of your disability?
yes
Is there anything that having Cerebral Palsy has prevented you from doing that you really wish you could do?
Travelling, moving without limitations. Living on my own.
What is your general outlook on your disability?
It sucks that I have it but there is nothing I can do, so I have to move forward
Does Cerebral Palsy affect your mental health?
yes
How did/does Cerebral Palsy affect your education?
it does not
How does Cerebral Palsy affect your career?
Makes it a bit hard to give 100% effort every day due to constant pain and fatigue.
How does Cerebral Palsy affect your love life?
Have never dated unfortunately. Can be difficult to bring someone into my life with all of my health issues. I feel like a burden to others.
What corrective procedures have you undergone?
two ‘releases’ and hip surgery
If any, what kinds of medication do you use? How effective are they?
Gabapentin, lexapro, marijuana. They help manage pain and depression decently well.
What did your parents do right and wrong, in raising a child with Cerebral Palsy?
They treated me just like any other kid and were patient. Wrong…maybe they hovered a bit too much and did not let me figure things out on my own
What are misconceptions about Cerebral Palsy?
That we have mental issues and are incapable of living full lives.
What do you find is the biggest challenge of living with Cerebral Palsy?
Chronic pain/movement issues
What are your biggest fears that stem from having Cerebral Palsy?
Premature aging, never ending chronic pain.
What was your worst experience caused by Cerebral Palsy like?
Pain
What are things to NOT say or do to people with Cerebral Palsy?
Do not treat them like children. Speak to them like you would anyone else.
What positive things do you think having Cerebral Palsy has given you?
Empathy. Understanding of what really matters in the world. I do not judge anyone.
How do you feel about how Cerebral Palsy is portrayed in media? What are some of your favorite pieces of media with authentic representation?
It is not portrayed in media and thats fine.
What would you like to say to people with Cerebral Palsy?
Its tough, I understand. Keep going.
What would you like to say to parents of people with Cerebral Palsy?
Help them but give them the tools to be independent.
What do you think society could be doing to better serve people with Cerebral Palsy (and disabled people in general)?
Empathy, acceptance.
What would you like people to know about Cerebral Palsy?
It has a varied range of symptoms. Its not as simple as lack of movement. There is a lot of pain involved