The death of Stephen Hawking stirred up some things for me. Seeing him described as so inspirational because of what he did while disabled struck a nerve. Like Hawking, I am disabled, but in a very different way. I am autistic and I have several learning disabilities. Unlike Hawking, I am not a brilliant scientist and I haven’t contributed something amazing to the world.
I am ordinary. I got my masters degree. I have a business that gets more successful with each passing year. I raise my kids. My husband and I take care of each other. I live my life. Yet people give me the “for a disabled person you’re an inspiration” line, and the painful truth is, a lot of it comes from my family.
My sister told me this last year after she had offended me, used some ableist standards to judge me, and told me that I am coming up short on raising my children because my house isn’t clean enough. I work a lot and I have two children, one of whom is a sensory seeking, autistic, rambunctious little boy who can make a mess faster than I can clean it up. My sister does not have children. And because this makes me so prickly, yes, my house is a mess, however, since my son was 18 months old I have had at least one therapist of some sort in my house at least once a month (OT therapy, speech therapy, Greenspan therapy), and none of them have ever said my house was inappropriate or unsafe for my children, and ALL of them would have to report me if they thought so because of mandatory reporting laws. So where my sister, who has not set foot into my house for 4 years because she moved several states away, got the idea that my house is some cesspool that requires some intervention on her part has been it’s own mind trip.
Her tone was very much the neurotypical sister, swooping in to help her poor floundering, disabled sister with her disabled son. After I called her out she hit me with the “you are an inspiration for getting a masters degree while disabled thing.” It hasn’t sat well with me since. In fact it has been painful and it’s taken me months to understand why.
And basically, I’m tired. It seems as though I can only be seen as either an inspiration or a failure. I can’t be seen as normal, or my own version of normal.
I’m tired of the definition of normal not being broad enough to encompass my experiences.
I’m tired of the assumption being that I should have been a failure.
I’m tired of the only thing people mention as being noteworthy about me is I did normal stuff while disabled.
I’m tired of being asked to meet standards that were created for neurotypical people, and then facing judgement, condescension, and criticism if I don’t or can’t.
I’m tired of all of the demand and responsibility being on me to make my needs and myself convenient for others, and that when I ask people to consider my needs or viewpoint, I am dismissed and criticized for asking people to accommodate me.
I am tired of having to fight for a place at the table. I don’t even want to try anymore.
I am tired of being asked to consider everyone else’s view point and limitations, without being given the opportunity to state mine or to ask for people to accept mine.
I am tired of being my sister’s inspiration story to her friends, friends that she is apparently too embarrassed by me to let me meet.
And I am tired of the fact that, even in liberal, progressive circles, the voices of people who are disabled are muted and cast aside. Most people aren’t aware that the American’s with Disabilities Act is under attack and people like me, my son, my husband, and Stephen Hawking are set to see our rights rolled back.
Stella Young articulated a lot of the frustration I feel about being reduced to an inspiration. See the video above. What I would add to it is that the people who are reducing us to our disabilities are the ones who have created a world that is hostile to us and our needs.
Stephen Hawking was a great scientist and a great promoter of science. And he used a wheel chair. Why are these two ideas mutually exclusive?