I Don’t Want a World Without Disabled People

Last night I was reading an article about a start-up that claims it can help prospective parents by allowing them to choose healthy embryos. I’ve written multiple times about my fears around tech companies that want to create genetically perfect matches, and my relief that my parents were never concerned with finding a cure for me. Selecting a healthy embryo may sound different to seeking a cure, but for me these things both feel deeply personal.

I don’t want to be cured. I don’t believe it would work, in fact I think it has the potential to be far more traumatic than just letting me live my life as a blind person. That’s not to say I don’t face barriers that others don’t have to think about. I do, and I speak very openly about them. But curing me seems like an overly simplistic way of thinking these barriers would somehow be removed.

As a society, we’re obsessed with scientific advancement. It’s a good thing for the most part. I’m not going to die from Smallpox or any number of diseases, and I’m very grateful about that. The work currently being done by scientists to try and limit future devastation that could be caused by Coronavirus is extremely important. I’m not anti-science, and I don’t even think that investigating possible treatments is always a bad thing. But can we really view blindness as comparable to dying from a communicable disease? It’s hardly the same is it.

And yet people are clamouring to cure it. Every month or so I read another article about a retinal implant, stem cell treatment or new form of gene therapy that is giving sight to the blind. Such articles are written to inspire us; we’re supposed to read them and feel happy that this is the direction we are taking as a society. I read them and feel bitter. I read them and feel angry. I read them and feel resigned and tired and bored.

Perhaps I’m not a very nice person. I suppose it’s a plausible theory. Perhaps I’m in denial, and I’m just upset that I’m not the one receiving the cure. Trust me, I’ve seriously considered whether that is what is going on inside of my head. But neither of these things feel quite right.

I’m tired and angry and all of those things because the assumption is that a world without disabled people would be better. We should pursue genetically perfect humans if we are to better our society; without achieving this level of perfection, we’ll be stuck where we are forever. But would the world actually be better off if disabled people didn’t exist?

There is beauty in disabled culture. I have known this beauty because I have been lucky enough to spend time in groups of disabled people. I grew up knowing other blind children, and at 11 I started studying at a blind school. Even when I left at 16 I still had blind friends, and I also made many friends with various different impairments. Disability culture is powerful and strong. There is collaboration and love and understanding and kindness and creativity. We learn to take on tasks that another member of our group can’t, knowing they’d do the same for us. How would this world be better without that?

This pursuit of perfection feels like falling into the trap of a society that only cares about what we can give back to it as a product. If I was “more functional” perhaps I’d be able to output more for companies that didn’t even care about me;, corporations that would replace me in a heartbeat once I wasn’t any use to them. Is that the kind of world we want to build? One where humans have what we perceive to be the strongest physical genetic traits? One where we don’t have to think about empathy or creating solutions or meeting people where they are at, because we’re all the same. It sounds terrible.

I don’t think we can stop the progression of gene editing and embryo selection technology. Maybe laws will be put in place, in fact I’m sure they will. There will be court cases and ethics will be debated and people are going to get hurt. But in the end, the cynical voice inside tells me money will be what tips the scales. Money and the desperate need for perfection.

We’re not going to irradicate disability in a medical sense any time soon. The technology doesn’t exist. And I’d argue that we never will, given that most disabilities are acquired and we know that genes can mutate. So why does any of this matter, if I genuinely believe it will never happen? It matters because we want it to happen. Because we’re moving towards a society that is going to be even less tolerant of disabled people. It matters because the stigma and shame associated with disabled bodies will only increase unless we confront the prejudice on which it is built. If the narrative is always that “fixing” disabled bodies is the goal, how will we ever learn to celebrate them?