Belonging:
Introducing Kids to Disability Culture
Introducing Kids to Disability Culture
All of us want to feel like we belong. For many of us, the groups we belong to are based on things we choose, such as political views, hobbies, shared passions, or religious beliefs. But we also belong to groups based on what is inherent in our being, such as our ethnicity, race, age, or gender. Being a member of a group, whether it is librarians for peace, Toastmasters, or urban Latinas, helps us to develop our identities. Belonging gives us confidence. It gives us purpose. It defines who we are.
So what group do our children with disabilities fit into?
When a child is initially diagnosed with a disability, the first thing most of us are advised to do is work toward resolving or reducing their medical issues or disabilities. We take our children to top medical specialists, attend countless therapy sessions, place our children in special education programs, and at times try all kinds of alternative therapies, including hyperbaric oxygen therapy or stem cell injections. This is definitely the right thing to do. We want our children to live up to their full potentials and we will fight our darndest to get them there.
But is it possible, just a little bit possible, that along the way we are sending a subtle subconscious message to them that they are somehow "broken?" That they need to be cured or remolded in order to belong to "regular" society?
At some point, most parents come to the conclusion that their child with a disability will never quite belong. This is, in part, a reflection on how people with disabilities are still discriminated against and shunned by regular society. While it's totally unacceptable to use a racial or sexist epithet in our society, nobody blinks an eye when someone is called a retard or a cripple.
But there is another piece to this puzzle that is more often than not forgotten. How can we push the bounds of society to accept people with disabilities when we have never even bothered to teach our children that they proudly belong to a culture of children with disabilities? They need to know they are members of an important group, that they belong, and that there are others like them. They need a place where they are "normal," and where there are others who understand what life is like for them.
We spend a lot of time teaching our children about their history, ethnic heritage, religious traditions, or the triumphs of their race over adversity. We start this teaching when they are mere toddlers, shaping their identities and making them proud.
Why don't we teach our children with disabilities this same sort of self-acceptance?
There is a rich history and culture amongst people with disabilities. But how many of us can honestly name a historic disability rights advocate other than Helen Keller? How many of us can name an artist or musician with a disability?
Just spend a few moments exploring the Museum of disABILITY History, a beautiful interactive web museum full of amazing people and stories. Or browse a disability culture site like Disaboom. You will be amazed at what a vibrant culture and history exists for people with disabilities.
I clearly remember the first time my daughter met another child like herself. She was almost two years old and despite the fact that she can barely move her body on her own, she managed to snuggle up to the other child and practically kiss him. Meeting a child like her gave her identity and a sense of belonging. She escaped--even if just for a moment--into a place where SHE was the norm, where she belonged.
I try to talk to her about other children and adults with disabilities. She's only five, so our talks are pretty simple right now. I also try to take her to places where she will meet other people with disabilities. We've been to the Disability Pride Parade, a few rallies, some conferences, and an event for Augmentative Communicators. I'm trying to give her a sense of her culture, even though it is inevitably difficult, given that I do not belong to her culture.
I want her to know that she belongs. I want her to know that she is not broken, even while we try to resolve her medical issues. I want her to be proud of her disability culture.
This may be a new way of thinking for many families. Sometimes it takes us many years just to accept our children as they are. If you are not there yet, fake it. Spend some time every few days talking to your child about famous people with disabilities, disability rights advocacy, and disability culture. Help your child to be proud of herself, proud of her disability, and proud to belong to a culture of disability.
Let your child belong.