Jim Sinclair, a prominent Autism activist said, “When parents say, ‘I wish my child did not have Autism’ what they’re really saying is ‘I wish the child I have did not exist, and I had a different, non-Autistic child instead.
Read that again. This is what we hear when you mourn over our existence, this is what we hear when you pray for a cure, that your fondest wish for us is that someday we will cease to be, and strangers you can love will move in behind our faces.”
This project is a very emotional one for me. The above quote from Andrew Solomon’s TED Talk “Love, no matter what” reminds me of the struggle I’ve had with my parents and sisters.
A lot of time people who have these conditions are very angry because they feel as though their parents don’t love them, when what actually has happened is that their parents don’t accept them. Love is something that ideally is there unconditionally throughout the relationship between a parent and a child, but acceptance is something that takes time. It always takes time.
As I post this I have just finished watching this TED Talk a second time, and grateful tears stream down my face. I have spent so long grieving for the things that Jenny may never experience, the things that I may never experience. I have spent so long angry at the world for seeing us as the Other. It has taken me this long to realize that it is our Otherness that makes us who we are. We are not broken. We are special.
You need to take the traumas and make them part of who you’ve come to be and you need to fold the worst events of your life into a narrative of triumph, evincing a better self in response to things that hurt.
-Andrew Solomon, How the worst moments in our lives make us who we are
One of the Ted Talks my Psychology professor showed us was by this man, writer Andrew Solomon. It was called, Depression, the secret we share. The book he refers to in this talk is called, Far From the Tree: Parents, Children, and the Search for Identity. You can find it on Amazon in paperback and e-book format. I’ve added Far From the Tree to my own reading list for this project. I’ve added two of his other books (The Noonday Demon: An Atlas of Depression and his most recent book, The Reckoning: Searching for Meaning with the Father of the Sandy Hook Killer) to my own personal reading list.
You can find out more about Andrew Solomon at his website.
In Psychology my professor, Heather Richardson, has been showing a lot of Ted Talks. I happened to come across this one with stand-up comedian Maysoon Zayid.
I was so moved by Maysoon’s story. At around 7:43 in the video, Ms. Zayid says, “Hollywood has a sordid history of casting able-bodied actors to play disabled on screen.”
Disability is as visual as race. If a wheelchair-user can’t play Beyonce, then Beyonce can’t play a wheelchair-user. People with disabilities are the largest minority in the world and we are the MOST under-represented in entertainment.
This is something Jenny and I struggle with. Jenny loves movies and television, and she experiences the world largely through the screen of her iPad. The walls of her bedroom are covered with her crushes (Leonardo DiCaprio, Josh Hutcherson, Zach Efron and many more).
This term at Ex’pression I’ve been taking a psychology course, and that combined with my choice to study my family dynamic have really opened my eyes to a lot of new ideas.
It makes sense that non-disabled siblings of disabled children might struggle emotionally, as a lot of the studies I’ve been reading indicate, including this article from HealthDay News.
Me and my sister Jenny (pictured) benefitted a great deal from the addition of a third child to our household, my youngest sister Sarah.
As the article states:
Siblings in larger families where a healthy child has another healthy brother or sister seem to fare better: “If a sibling has another sibling to interact with, they seem to adapt better,” Goudie said.
-Author and assistant professor at the University of Arkansas, Anthony Goudie
According to the March of Dimes, causes of cerebral palsy include certain infections in the mother, premature birth, insufficient oxygen to the fetus, blood diseases, severe jaundice or other birth defects including genetic diseases. Research continues to be done on cerebral palsy and its causes. It is not a progressive condition, meaning it does not get worse over time.
United Cerebral Palsy, the leading organization and source for information about CP, estimates the following:
- Approximately 764,000 children and adults in the United States have one or more symptoms of CP.
- About 8,000 babies and infants are diagnosed with CP each year, and about 1,200 to 1,500 preschool age children are also diagnosed.
- About 70 percent of children have congenital cerebral palsy, which results from brain injury in utero, and an additional 20 percent are diagnosed with congenital CP because of a brain injury during birth.
- About 10 percent of individuals with CP acquire it after birth due to brain damage such as infection or head injury.
Cerebral Palsy is a group of disorders that can involve brain and nervous system functions, such as movement, learning, hearing, seeing, and thinking. Instead of seeing it as a limitation, these six saw as merely another challenge and overcame the struggle to become some of the best minds in their field. Josh Blue was able to use it as a big base for his hilarious comedy. Dr. Brunstrom is able to understand the condition better than any other neurologist in her field because of her point of view experience.
Psychologists used to assume that having a child with a disability at home was damaging to the other members of the family. Recent research has shown that while it adds to stress, it doesn’t necessarily lead to damage. It can lead instead to creative problem solving and personal growth. Children who have disabled siblings can gain a greater appreciation of the value of different kinds of people and become more understanding of human differences.
Kutner, Lawrence. “When a Sibling Is Disabled.” Psych Central. Psych Central. 28 July 2014. Web. 27 July 2014.