As far back as I can remember, I have always been compared to my non-disabled peers in developing and meeting milestones. Sometimes doctors and other professionals talked about me as if I weren’t disabled when compared to my peers. I never appreciated this because it always made me feel inferior. I was just doing the best I could for me. I have often been compared to other disabled people too.
Growing up, if I complained about CP, people often told me to be grateful for what I could do. They would say, “At least you’re not nonverbal or intellectually disabled.” While I understand that people in my life didn’t mean any harm when these statements were made, I believe that it is harmful.
Being nonverbal, having high support needs, or having intellectual disabilities doesn’t make somebody any less of a human being. People who are nonverbal, or who cannot feed or bathe themselves, and those who have intellectual disabilities are still human beings with feelings, needs, and personalities. This mentality is dangerous and perpetuates stigmas that disabled lives aren’t worth anything.
Someone who uses AAC (augmentative and alternative communication) is just as entitled to speak their mind as a disabled person who uses natural speech to communicate. Regardless of the means of communication a particular person uses, all feelings and thoughts are valid, and people should be treated with respect.
Behavior is also a valid means of communication for disabled people and all people. If a person is presenting with off-baseline behavior, people will often say that it is just part of their disability rather than trying to search for additional causes. This is why medical personnel must listen to a disabled person and their support team.
As an example, Kim Oakley’s son James who has autism and epilepsy, was taken to a local emergency room presenting with agitation, self-injurious behavior, and refusal to eat, and drink among other symptoms. Doctors initially thought that this was just a part of his autism. It turns out that James had kidney stones that were causing him extreme discomfort. Can you imagine having intense pain from kidney stones and not being able to tell anyone about it? James was using every means at his disposal to tell his caregivers that something was wrong.
Comparison is also harmful when it comes to mobility aids. When I was a kid, I always held onto the ableist belief that to be a successful disabled person, I needed to be able to walk without using a walker or forearm crutches. Anything less, and I thought I was a failure. I had always believed that using a wheelchair would make me less independent. I feared that I would become dependent on the wheelchair. It was this fear that kept me from getting a power wheelchair until the age of 13.
Disabled people are all unique. Often, disabled people have to work harder than their non-disabled peers to achieve the same milestones. Whatever a disabled person is capable of achieving is okay. Differences in the level of functioning don’t make one disabled life more valuable than another.
“A Look at Medical Issues That Can Cause Behavioral Changes in Patients With Autism.” YouTube, uploaded by Kim Oakley, 8 June 2021, http://www.youtube.com/watch?v=-Q43Emsz3FY.