this ain't livin'

I write a lot about the way that disability is depicted in pop culture, and I also write a lot about why I spend so much time discussing it. One issue I think is particularly important to look at is the way pop culture handling of disability contributes to social distancing, because it is usually depictions played and written by nondisabled people for the consumption of nondisabled people. We are not part of the process of developing and considering such characters at all and people seem shocked that we are also in the audiences of pop culture.

I also see this coming up with QUILTBAG characters and members of some other minorities. And, in fact, I note that there is often a push to specifically exclude creators writing and exploring their own lived experiences. I was struck recently by the response to two more or less identical queries: One of them included a disclosure that I was transgender because I thought it was relevant to the piece. The other query, for the same piece, did not include that fact, but was otherwise the same, contentwise. The positive response was to the query without the disclosure, a reminder that the arbiters and gatekeepers of our culture, the people deciding what gets published and produced, usually seek out people like them and seem almost threatened by our attempts to control the depiction of our own identities.

Pop culture depictions of disability are produced and seen through a nondisabled lens. They are sterilised and neatly packaged, allowing nondisabled people to project their own ideas about disability, rather than having to actually engage with real disabled people. These depictions do not challenge or upend attitudes because they are not intended to. Consciously or not, they reinforce attitudes, because they involve the dominant culture telling the stories of a nondominant culture.

This translates to the way that people think about disability in the world in general. The belief that we have nothing to say about disability means that we are silenced and ignored when we try to speak up about disability issues. Instead, nondisabled people tell us what we need, how to accomplish political goals, where to find resources, what to do with our lives. Nondisabled people decide whether we are ‘disabled enough’ and nondisabled people get to shape our lives and existences. I see this narrative over and over, from autism organisations without a single autistic person on the board to nondisabled parents of children with disabilities being treated as authorities on disability.

I see it in the narrative surrounding caregivers, where everything is seen through the perspective of the caregiver and caregiving is regarded, inherently, as a misery and a hardship. It is assumed that caregivers are nondisabled and it is also assumed that they are heroic and brave, rather than just people doing their jobs, rather than partners or parents or friends of people who require aides and assistance. Caregiving is lionised in our culture because of the way disability is viewed, because of the attitude that we should be seen and not heard, patted on the head and ignored.

People project their ideas about disability onto me, and other people with disabilities, all the time. Disability is a tragedy, disability is scary, disability is the worst thing ever, disability is the end of everything. As I confront my attitudes about my own disabilities and those of others, I am reminded that I need to be a model disabled person, to fit in with the mold people want to press me in. If I am angry or sad about my disabilities, I am feeding into the attitude that disability is inherently bad and awful. If I am proud, I am deluded, or I am scary and should be silenced because I am saying things people do not like to hear. I cannot have an uncomplicated relationship with my disabilities because just being in society complicates them.

We are objects, we are props, we are ideas, we are vague concepts. We are definitely not human beings. The insistence on only allowing disability to be depicted and discussed through the point of view of nondisabled people is incredibly dehumanising and so very difficult to push back on because to confront it is to be silenced. I have actually been told to shut up in conversations about disability where people read me as nondisabled when I started talking, paid attention to me and nodded, and then recoiled when I outed myself. To break down the busted system surrounding depictions of disability, we have to get our feet in the door, and we are firmly reminded that we are not wanted.

What is so frightening about allowing people to talk about their own lived experiences, to take charge of the way they are depicted, to depict themselves honestly and in a way that speaks true to them? Well, it requires fundamentally dismantling the way you think about disability, if you are a nondisabled person. When outsiders get to do the defining, the talking, the discussing, the depicting, they can carry on with the same attitudes they always have, knowing that no one can challenge them and knowing that their depiction as it stands will be accepted, generally, by the people around them.

To allow us to depict our own lived experiences would be to admit that the experience of disability is not homogeneous, that we all have very different attitudes to disability and relationships with your disabilities. It would be messy, not tidy and neat the way boxing all members of the disabled community into one corner is. Fault lines would be seen. Cracks would show. Flaws would stand out. And that would deconstruct the very idea that we are an amorphous mass with identical thoughts, experiences, needs, and beliefs.

It would be to admit that we are human beings.