Disability Is What We’ve Made It

October is Disability History month. Carrie, a frequent guest blogger, joins us to share about what disability means. Be sure to read her previous blog posts as well.

Artwork of Anita Cameron — Quote: Civil rights are not given you must fight to get them, then, you must fight to keep them. Black women wearing a blue beanie with Adapt on the front. Lower right, Black person face down being lifted by arms behind their back, lower left, Anita Cameron holding microphone in wheelchair, flag with red and white stripes, blue background w/ white dots in shape of a wheelchair.

By Carrie Basas

I was born with my disabilities. From birth to five, I had 38 surgeries and spent most of my time either in a hospital or separate school for disabled students. (If you’re feeling the word “inspiring” coming on, please stop and watch this TED Talk.) In both settings, I was surrounded by other kids who were experiencing medical or behavioral interventions to make them “more normal.” I saw a world that expected me to adapt to it. 

In third grade, I was mainstreamed to my neighborhood school. I became the only kid with a disability, or so I thought. Nondisabled people told me that I had won the prize of mainstreaming because I showed potential. I “fit in” better than my disabled peers that would continue to be warehoused. I missed them, but I was told that I was no longer them.

As a disabled kid, I defined disability in terms of what was happening to my body – the ways that I couldn’t get around in certain settings, the anxiety that I had about new activities where I had to create my own access, and the shame that I felt when people would stare at me. I didn’t see representations of disability that diverged from the idea of it being an individual physical, mental, sensory, or communication issue. 

Erin and I recently asked some kids how they would define disability. (Thanks to the families and youth who shared their definitions with us.) I appreciated the kids’ candor. Youth are working through their definitions with vulnerability:

  • Age 4: “I don’t know.” (Their parent was glad they had started the conversation.)
  • Age 4 (has disabled family members): “It’s people who use wheelchairs to roll and can’t walk.”
  • Age 5: “I think my only guess is someone who can’t teleport.”
  • Age 6: “I have not learned yet . . . Maybe it has something to do with having a big responsibility?”
  • Age 6.5 (that 0.5 is meaningful to the kid): “The opposite of ability.”
  • Age 9: “Something that causes someone to not have a body part or their minds think in a different way.”
  • Age 9: “Disability should not be called a disability, but rather a different ability.”
  • Age 10: “When people can’t really control certain parts of themselves.”
  • Age 11: “Disability is defined as anything that puts you at a lesser ability than most people, could be something like depression or autism or having no legs. Many things are disabilities.”
  • Age 11 (has a disability): “It makes you unable to move a body part or you don’t have a body part that other people have.”
  • Age 11: “When you’re not able to do something—from ‘dis’ meaning ‘not’ plus ‘ability.’”
  • Age 12: “I think disability means that you are physically or mentally unable to do something, but this doesn’t mean a person is not capable of other things, like if a person had a physical disability, they could be really good at math or something and vice versa for a person with a mental disability.”
  • Age 12: “Something that affects your everyday life and you can’t control it. And it’s usually something mental or physical.”
  • Age 13: “Something that makes it harder to do something.”
  • Age 14 (has a disability): “Ask Google. A physical defect that the typical person probably doesn’t have.”

I viewed disability as an individual medical issue for almost 20 years until I found mentors who introduced me to disability communities. I stopped thinking that my impairments were the problem and acknowledged that disability was put on me by others. Disability is a social experience of discrimination, stigma, and alienation. How do we choose who has a disability and who just has a health condition or a different way of being in the world? Our lines are arbitrary. I struggle with a world not designed by or with me and the negative attention that I receive, especially the charitable “you’re so inspiring” moments. They aren’t about me; they are about others’ discomfort. Being in community with other disabled people and claiming our pride are the positive parts of disability and ones that we don’t see in mainstream media.

While once presenting to health officials, I tried to explain how I gave up on being normal, even though I’ll never fully exorcise internalized ableism. One of the participants challenged me: “Why wouldn’t you try to be normal? Why wouldn’t you want that?” He didn’t accept my answer that I could never reach that goal; it is a mirage that makes me feel like a failure. Most days, it is not my body-mind that is unwieldy. It is how others react to me.

Youth, too, are asking what disability means in society. Naming our reactions to someone else’s body or mind helps us to question who decided what was “normal”:

  • Age 6: “It’s when you’re still trying to find and learn how to use your hidden superpower.”
  • Age 10 (has a disability): “Something physical or mental that makes someone different. Sometimes people’s disabilities give them more abilities, like my ASD makes me smart but doesn’t make it easy for me to understand people.”
  • Age 10 (intellectually disabled): Conversation with parent: “What’s a disability?” Young person points to themselves. Parent: “You?” Young person: “Yes, I’m cool.”
  • Age 10 (has a disability): “Disability can be physical or emotional or invisible like my ADHD.”
  • Age 11 (has disabled siblings): “That’s a question because it could be anything. Disability could be anything.”
  • Age 11 (has disabled family members): “Disability affects the brain or body. Most people who have a disability also have possibilities.”
  • Age 13 (self-identifies as autistic): “Something physical or mental that prevents someone from acting like a ‘normal’ member of society.”
  • Age 14 (disabled little-person and neurodivergent): “It means you are unique. You see the world from a different perspective from regular people. Overall, it’s wonderful.”
  • Age 15 (attends a school for neurodiverse students): “It can be a physical or mental challenge that can present difficulties. But also something that could be worked around.”
  • Age 17: “When someone has something about them that society says is ‘not normal’, whether it be mental or physical.”

There are two parts to disability: what is happening to our body-minds and how it is stigmatized in society. We can build inclusive, justice-centered communities where we honor all ways of being and dismantle barriers that keep disabled youth and adults socially isolated and marginalized. We might never reach teleportation together or have exciting superpowers, but we can hold ourselves, disabled and nondisabled, accountable for creating belonging and pride. It is a “big responsibility,” as the six-year-old said.

Shameless plug: Watch some amazing student videos to get this conversation going.

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I am writing from the lands of the 29 federally recognized and non-federally recognized tribes in now Washington State, including the Coast Salish people — Duwamish, Muckleshoot, Suquamish, Snoqualmie, and Native American organizations that have treaty rights and have been here since time immemorial. I give my thanks to the elders, Native and Indigenous colleagues and relations, and the land itself. Fakequity pays “rent” to Native organizations in Washington and Hawaii; a small act to repair and work to be in more justice based relations.