Experiences of Disability Are Not Universal

One of the things I talk about a lot when discussing reframing the way we think about disability is the idea of ‘working towards the neutral place,’ a place with disability is value-neutral. It is not inherently good or bad, it just is, and this provides room for a lot of identities. It provides room for mad pride just as it provides room for people who aggressively pursue psychiatric care. It provides room for wheelchair dancers and for people who are angry about using a wheelchair. It provides room for people who ‘just want to be normal’ and for people who love themselves just the way they are.

This is a hard concept for many people to grasp. I can see people fumbling at it, and one of the places where people seem to really struggle is in attempts to classify the experience of disability as universal; if we are ‘working towards a neutral place,’ surely that means all disabled people are the same, right?

Not so right. For one thing, disabilities are incredibly diverse. You are talking about an estimated 20% of the population. There is no way that 20% of the world has identical lived experiences and attitudes about identity. My experience as a disabled person is different from that of people who do not share my disabilities. I do not, for example, have cerebral palsy, so I don’t know what that experience is like; my knowledge of my own disabilities does not transfer over there, I am not magically enlightened and aware. I could educate myself, but I will never fully know that experience.

And even people who share my disabilities experience them differently. Two people with depression, say, do not have an identical experience. Even two disability rights activists with depression. Because identity is intensely personal, and disability is bound up in identity, and that means that different people have different experiences. That also means that one person with depression might find a particular thing helpful while another does not. One person with depression might believe in and benefit from positive thinking, while another person does not.

When we start overmapping experiences of disability onto each other like they are identical and universal, we erase actual lived experience. When we say ‘so and so did it, so can you!’ we are ignoring the very real personhood of the people we are talking to. When we say ‘such and such a thing worked for me, you should try it!’ we are ignoring the fact that the person we are talking to has a different lived experience, different attitudes about disability, a different identity.

The goal of working towards the neutral place is not to turn disability into a beige, uniform blah that is the same no matter who you are talking about. ‘Disability’ is a complex identity, it is not a tickybox. Disability intersects with so many other identities, with race, class, gender, sexuality, and all of these things can play a role in a person’s perception and experience of disability. Comorbidities can influence the way people experience disabilities, and some disabled people (hi!) have multiple disabilities. You cannot disentangle identities and talk about one but not others, or view a particular aspect of a person’s identity in isolation.

Disability is not a vacuum. The neutral place isn’t an order for all people to think about their own disabilities in the same way. It is a request to society to stop assigning values to disability, and allow disabled people to shape their own identities and values. It is a place with room for everyone, from people urgently seeking cures, who loathe their disabilities and want them to go away, to people who actively reject cures and who love their disabilities and regard them as an integral part of themselves. The things we are fighting for are intended to benefit everyone, not just select groups of people.

And there is a dangerous overtone here, of the idea that some people do disability right while others do it wrong, that some identities and experiences are more valid than others and need to be given more attention. The hierarchy of disability is a complex, tangled web, and this is one of its threads, the idea that disabilities are universal and interchangeable, that lives can easily be swapped out and exchanged with each other.

Experiences of disability are not universal. My experiences, of my own disabilities, are not the same as those experienced by other disabled people, even when we share disabilities. What helps me may not help others; what other people find helpful may leave me cold. Until we can accept this, it is going to be very hard to achieve social equality. We must talk about the fact that disability is not one size fits all, even as we attempt to do the greatest good for the greatest number. Ramps do not benefit me personally, but I still fight for them because they benefit lots of other people, and they do not appear to cause harm.

I work in solidarity with people who have different lived experiences of disability because this is their world, too, and I want them to be safe in it, just as I want them to work with me to make the world a safe place for me as well. My experiences are not ‘wrong’ just as yours are not ‘wrong.’ They are just experiences, and we can find common ground as disabled people without erasing each other.