Does my chronic illness make me disabled?

Before I started following disabled people and disability activists on Twitter, I did not know that a lot of chronically ill people also identified as disabled. I thought of the chronically ill population and the disabled population mostly as two separate groups that only sometimes overlapped. I personally associated disability with having to use (mobility) aids or having severe mental disabilities.

So when I first learned that a lot of chronically ill people do identify as disabled, it was quite a surprise. But when you look up the definition of a disability, most dictionaries and other sources say something along the lines of “any condition that limits a person’s movements, senses and activities”. It is clear to me that in many cases, chronic illness definitely fits that definition. Slowly the question started to arise whether I was disabled. Calling myself chronically ill was easy: I have a chronic illness, so I am chronically ill. But no matter how easy it was for me to accept that other chronically ill people could be disabled, and even that my own illness can be a disability, thinking of myself as disabled is quite a different thing.

A lot of this has to do with internalized ableism. Ableism tells you that it is a bad thing to be disabled, that disabled means you can’t do anything. It tells you that you might have a disability, but calling yourself disabled is letting yourself be defined by your disability, and that this is somehow “giving up”. This is why it is much easier for me to say I have a disability than that I am disabled, even though technically they should be synonyms. People are so focused on person-first language, on separating you from the disability, that these words are often not treated as such. This is why most disabled people prefer identity-first language: they are disabled, and that is not a bad word. And in theory, I am totally behind that. Actually being comfortable with calling myself disabled though? I’m definitely not there yet.

Another reason I am hesitant to call myself disabled is pretty much Imposter Syndrome: I don’t feel disabled enough. I feel like by claiming I am disabled, I am appropriating a word that isn’t for me. I’m trying to take up space that wasn’t meant for me. My personal definition of disability only contained the limited movements and senses, but I never considered the limited activities part – and exactly that part is what makes me disabled. But to be honest, even that can feel like a bit of a stretch. I feel like I can technically do most activities abled people can do, just not all the time, and somehow that doesn’t feel like it counts as “limited”. A lot of the things I cannot do anymore don’t feel important enough, as they do not impact my daily life – like going to standing concerts or going to museums without constantly having to sit down.

At the same time, I also cannot work full-time or drive safely at this point in my life – which are definitely things that impact my daily life. I might still be able to work and go to social events, but not on the same day. I am still able to go on holidays, but they don’t help me to rest: instead I need to recover afterwards. My illness definitely does limit my activities and my daily life, and by that definition, it does disable me at least some of the time. Sure, I am most definitely not as disabled as a lot of other disabled people. I generally do not need things like mobility aids, or the disabled seat on the bus. But I still do need a general seat on that bus, because I can’t stand as long as healthy people – and in some situations I might need that disabled seat too. I also would be able to go to things like standing concerts if I could take a rollator or a wheelchair. Although you certainly do not need mobility aids to be disabled, this realization did help me to feel a little more comfortable identifying as disabled.

Although over time it has become easier to identify as disabled in English, it is somehow a lot harder in my native language Dutch. In Dutch, the equivalent words to disabled are “gehandicapt”, which translates as handicapped, and “invalide”, invalid – which is just as problematic here as it is in English. So the neutral word disabled people prefer in the Netherlands is “gehandicapt”, which is a lot harder for me to identify with. Of course, this is largely due to the same reasons identifying as disabled is hard – internalized ableism, not being disabled enough. But there is definitely also a language issue there. Disabled simply means I am not abled, I am not able to do everything healthy people can all of the time. I can take that word at face value and explain why it applies to me (even if it doesn’t always feel like it does). With “gehandicapt”, that is a lot harder, so I struggle a lot more to identify with it. It is much easier to say I have a “beperking”, which translates to both a disability and a limitation – but that doesn’t have an identity-first equivalent.

However, it does not make sense at all to be able to identify as disabled in one language but not in the other. They should mean the same thing and refer to the same group of people. Laws that concern disabled people often concern me as well, no matter what language is being used. My illness is always fluctuating and therefore, my disability is not always the same – but that doesn’t make me any less disabled. Disabled is not a bad word: it just means that sometimes I can’t do things or might need accommodations to do them, and that is okay.

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