Who Defines (and Controls) ‘Normal’?

Discussions about normality come up routinely in conversations about disability, and there’s a lot to unpack with the concept of ‘normal.’ Some people ‘just want to be normal,’ well meaning family and friends ‘just want people to live normal lives,’ others of us dislike being told that we need to be ‘normal’ and we need to adjust our identities and our selves to comply with ‘normal’ and ‘fit in.’ Doctors hasten to tell people with acquired disabilities that they can probably ‘live normally’ after an adjustment period.

Normal is the holy grail, normal is the goal, normal is the brass ring that everyone should be reaching for, right? It’s the most important thing. To be normal. To look normal. To act normal. Make yourself very small if you have to, contort yourself, compromise yourself, muzzle yourself, but, above all, be normal.

I’ve been struggling with this a lot lately as I work in a field where there are definite standards of behaviour and there are definite expectations and I cannot always meet those. I can’t ‘just ask for accommodations’ because that can be dangerous and requires outing myself, so I need to either be slippery and sneaky about getting the accommodations I need, or I need to be blunt about setting boundaries and stating needs, and run the risk of becoming known as someone who is ‘difficult to work with,’ which is one of the worst things to be branded with when you are someone who relies on connections to get work and keep receiving work from the same people. Or I swallow it and try to deal, and make myself ill in the process.

In all discussions about ‘normal,’ what this word means, how it gets applied, how it is weaponised, I am drawn again and again to who is getting to define it. Not just to define it, but to control it, to decide how and when it should be applied, who fits within this word and who does not. Because, I’ll give you a hint. It’s the ‘normal’ people who are defining normal. It is people who are nondisabled who get to decide what ‘normal’ is. This concept, of the people in positions of power defining normality, is rooted in our very language, the terms we use to describe people who are not members of dominant classes. Normal and abnormal. Us and then. Familiar and Other.

‘Normal’ is the nondisabled default. It is walking on two legs, it is a neurotypical (ah, see, there it is, embedded in the very term) brain, it is two eyes that see, it is ears that hear, it is hands that feel, it is smoothly controlled movements, it is being ‘well adjusted’ and ‘balanced’ and ‘healthy.’ Anything that falls outside this is ‘abnormal.’ Disability is ‘abnormal.’ Abnormal means unwanted, as dictated by the definers of normal, which makes disability bad and frightening.

Except that it’s really not. Disability is my normal, the normal for the people I spend most of my time around. And that leads me to wonder what this word, ‘normal,’ really means; is it about some standard that should be achieved, or is it about the place where you feel comfortable? And if it’s that second, which I think that it is, then why do some people impose their version of normal on others? I don’t insist that what is normal for me be the normal or the standard for other people who wouldn’t be comfortable with it, nor do I appreciate it when people demand that I do things that are not normal for me. That are dangerous or that clearly conflict with my identity and the way I work, just as things that are normal for me would be harmful for other people.

It’s because people in dominant positions get to define normal that we reach this state of affairs. One of the ways to assert dominance is to make it clear that people who are not like you are ‘abnormal’ and must change. Must adjust. Must be, in other words, controlled. It is a way not just of asserting, but maintaining and retaining control. As soon as the cat is out of the bag and people understand that ‘normal’ is in the eye of the beholder and there’s nothing actually wrong with being different from someone in a position of power, that power evaporates.

People seem frightened by the idea of people with disabilities who are proud of their disabilities. Who don’t want cures. Who don’t want to be ‘normal.’ Who make no effort to ‘fit in’ and don’t care who knows how they feel. This doesn’t mean that all people with disabilities feel that way, or that all people with disabilities should feel that way. It is not my place to tell other people how to feel, and to tell other people how to navigate their disabilities, and I am not going to pretend that being disabled comes up a bowl of roses all the time. There are limitations on my life as a result of my disabilities that are sometimes really frustrating and I own that at the same time that I would not want to reject or change my disabled identity.

This very word, ‘disability,’ is so scary and stigmatised that people are constantly coming up with euphemisms because they are afraid that people don’t want to be referred to with this word.

I hear people arguing that we should keep using these euphemisms instead of just using the word, disabled. I cannot say enough how wrong I think this is. It is a denial of my identity, it is a denial of all of the identities of people who are disabled and proud, in service of continuing to allow nondisabled people to define, control, and dictate what is ‘normal.’ And I am working to build a world where people who want to be disabled and proud can be, where they are not kept back by social attitudes or internalised beliefs. I can’t do that if people persist in making disability a dirty word. Neither can other disability rights activists. The point here is not to get all people thinking the same way (a laughable premise) but to give people an opportunity to truly choose.

Maybe people wouldn’t feel more comfortable with disability euphemisms if this word and identity weren’t so stigmatised, if disabled was just an adjective, a facet of a person’s identity. Maybe if we normalised its usage, disability would be normal too.