By Aimee Sterk, LMSW, MATP Staff
Every time I run across it, I am surprised, and then not surprised, and then dismayed—friends, family members, colleagues, people I run into in my day-to-day life who talk about their experiences as children with disabilities, and the encouragement from parents and professionals not to use assistive technology. I’m talking about ableism in
sheep’s clothing. Well-meaning people who through their message of “walk at all costs” or “don’t use augmentative communication as it makes you stand out” or “get the smallest hearing aids possible so people can’t see them even if they don’t work well for you” or “don’t tell people you are blind, just blend in” are teaching children with disabilities that they are less than. The messages teach that it is better to fit in and be as “normal” as possible.
Even if this fitting in means the pain and suffering of walking all day on crutches when life would be much easier and independence and endurance would be supported by using a wheelchair or powerchair (See my colleague Laura Hall’s blog on AT, shaming, health and the Spoon Theory and her choices about using AT).
Driving home today I listened to a Moth podcast about a woman who disliked herself/her blindness for so long she hid it from her doctors, her children, and her friends. She couldn’t see forms to fill them out and had a panic attack almost losing her child on the playground, but was so ashamed of being blind, she continued to hide it. When she finally sought assistance and assistive technology for her vision loss, she wanted to learn how to use a cane in a neighborhood where she wouldn’t run into any friends. A couple weeks ago I listened to a Strangers podcast where a man who slowly lost his vision was so upset about losing his vision he too chose not to acknowledge it and took jobs on construction sites putting himself and others around him at great risk.
There are so many people and so many stories of adults in direct and indirect ways labeling children with disabilities as less-than. By encouraging “blending in” or not using AT that could help, adults are teaching children with disabilities that they are better when they are less themselves and more the “norm”. This view then permeates into adulthood and society. We as people with disabilities internalize the message and believe it about ourselves—the more we blend in, the more worthy we are.
Disability pride is a challenge to this ableism—a belief in the equality of people with disabilities, disability as a natural, beautiful part of the human experience, and access and accommodations as rights. Disability pride is lacking in children’s literature. All of the children’s books I’ve read about disability talk about how so-and-so is different and yet the same, or do some kind of inspiration porn overcoming story, or even worse, promote negative stereotypes about people with disabilities. Just as being “colorblind” hurts the fight against racism, believing we are all the same regardless of disability hurts the fight against ableism. It denies the real, lived differences, the societal barriers, and the beauty of the culture and experience of life as people with disabilities. It ignores the systemic impact of ableism, including dramatic differences in unemployment and income-level to name just two factors.
How can we start working with parents and professionals, and get to kids themselves too, and undo this message? How can we promote pride among kids (two good places, MDRC’s Her Power, Her Pride, Her Voice and Parents Promoting Pride)? How can we teach kids to ask for accommodations as a right—not see themselves or the request as a burden/problem? Have you run across books that help explain ableism and disability pride and encourage children to use and be proud of their assistive technology? The closest I can come up with are the cool Halloween costumes incorporating wheelchairs.Tweet