Utopia: An ideal world, where everything is beautiful, and nothing hurts. Where buildings are sleek and glorious and nature is pristine and everyone gets along and everything is just hunky dory. What’s missing? In almost every narrative of utopia, from short stories to books to nonfiction to imaginations of utopia to calls for proposals on utopian projects, disabled people are notably absent. Sometimes they aren’t just invisible, but actively erased, with an explicit callout that disability has been solved in utopia, that it is practically criminal.
It’s a bitter, sharp reminder to disabled people that in the idealised version of the world that most people hold in their heads, we don’t exist. We are absent. Our very identity is bad, and wrong, is the incarnation of suffering, and in a world where suffering is eliminated, we would perforce be absent. This is incredibly hurtful, and it’s hurtful on so many levels that I hardly know where to begin.
So let’s start with the casual erasure: Utopian worlds in which advances in science and medicine have made disability a nonissue. Genetic manipulation makes it impossible to have a baby with a congenital disability, and there’s no such thing as an acquired disability in a world where it’s possible to heal all wounds. Disability here is objectively wrong no matter the form it takes, whether it’s mental illness or a spinal cord injury or an intellectual disability or any number of other things.
I can’t speak for other disabled people. It’s not my job. Nor do I purport to. There are some people across the disability spectrum who absolutely want to eliminate their impairments and wish there was a cure, whether we’re discussing congenital or acquired disabilities, simple or complex. Other people don’t have an inherent problem with their impairments, but they do wish that the societally disabling factors that make their lives difficult were removed, and I do fall into that camp: We should have both a physically and emotionally accessible environment (that includes better medical care to alleviate issues that don’t magically go away with accessibility, like effective pain management for people who need it).
Even in that environment, though, impairments are not erased. If mental health stigma is eliminated, people can manage their mental illnesses as they see fit, and the environment provides them with supports like paid time off and other accommodations, people will still be mentally ill. Which brings us into the realm of disability pride: Some of us feel that our impairments are integral parts of our identities, and while we would like society to stop disabling us, we don’t want our impairments to vanish into the ether. For us, to hear that disability should be eliminated is to hear that we should be eliminated, because most people are referring to both disability and impairments in this context. The idea that someone might not actually have a problem with using a wheelchair for mobility, or having a brain that works differently than other people’s, is beyond imagination and kenning.
Which brings me to the explicit erasure, which in a way hurts even more. We’re used to being ignored, though it chafes and frustrates, but other people go out of their way to call for our elimination, sometimes when they think they’re being ‘progressive.’ They talk about how great things will be ‘when disability is eliminated,’ as though this is something we should be celebrating, as though you are not saying to our faces that you think we should be struck from the face of the Earth, because after all, what could we have to offer to society?
A vision of utopia that silently centred access to accommodate disabled people without remark would be amazing and delightful to read about, a world in which disabling factors, but not disabled people, were removed. If that vision included an honest assessment of and confrontation with impairments as integral components of people’s identities, that would elevate it, making it stand out, sending a really striking message.
There’s been a lot of talk of late about ‘diversity’ in media, by which people often seem to only mean racial diversity, sometimes with a grudging side of LGBQT people (‘T’ as afterthought, as always). But diversity is so much more than that. Diversity is disabled people living free and independent lives. It is people of many faiths. It is people of all social classes. It is people of different cultural backgrounds. Diversity is about the whole of human experience, and the overlaps between, it is the disabled Arab Muslim woman and the gay teen and so many other things. And when you cut entire classes of people out of your vision of what the world ‘should’ look like in an idealised future, it sends a pretty clear message to those classes of people, many of whom are already cut out of society as it is.
Whether you’re writing utopias, or submitting work for anthologies, or developing calls for submissions, I’m begging you to think about this. Think about what you mean when you use disability in your work, and think about what it means when disability is entirely absent. Think about the phrasing you use when you talk about disability. Go talk to disabled people. Don’t just take my word for it. Seek diverse opinions from disabled people with different kinds of impairments, disabled people living at different intersections. Be prepared for people to be angry, or frustrated, or unsympathetic, and when they are, think about why that is.
But please, stop telling us that in your ideal magical perfect happy world, we should be absent.
Image: Disabled, Paul Kelly, Flickr