What’s in a word? Disability & terminology

By Annie Mattsson

It’s not easy to know what words to use when talking about disabilities. The accepted terms change over time, and different communities and institutions give different recommendations. That “idiot” is offensive is obvious. Most of us know not to use “retarded” or the Swedish “efterbliven”, but is there a difference between being autistic and being a person with autism? And why would Deaf be written with a capital letter?

Over the years, terms have changed for different reasons. “Deaf mute” or “dövstum” is no longer in use and deafness and mutism are considered two different things. Words like ”idiot” and “imbecile” are no longer medical or legal terms, but neither is “retarded”, which succeeded them. In Swedish “idiot” was followed by “sinnesslö”, which became “efterbliven”, after which came “utvecklingsstörd”, now often avoided in favour of “intellektuell funktionsnedsättning”.

As the disability rights movement gained ground, awareness increased of how words can be offensive and discriminating. Many of the abolished terms were born out of prejudice, discrimination, and condescension. In some cases, the views of the medical profession on diagnoses have also changed. But often terms that were originally considered neutral became slurs, and were then replaced. This is a common phenomenon which can be seen with all disadvantaged and oppressed groups in society. An often-used example is how neutral words describing women over time become pejorative and sexualized.

Since the sixties, activists have attempted to reclaim words with a negative connotation and the word “crip” has gone through an evolution similar to that of “queer”. While “crippled” has been used in pejorative ways “crip” is used in a context of pride and identity. Within academia there is also the theoretical perspective of crip theory, which is related to, and often combined with, postcolonialism, gender studies and queer theory.

Identity and pride are present in many recent discussions of terms. For some time, the recommendation in both English and Swedish has been the “person first”-principle. “Disabled” or “autistic” should be replaced with “person with disability/autism”, since you are first and foremost a person and that includes much more than just your disability. The reasoning is nothing if not well intended, focusing on inclusion and what unites us. Some were surprised when autism activists instead have defended the terms “autistic” and “autist”, explaining how they are indeed not foremost something else than their disability. Instead, they find that having autism is to perceive and interpret the world in a way profoundly different from that of the neurotypical and that means no part of them can be something else than autistic – it is who they are.

In a similar way Deaf with a capital D has been introduced to the English language. The difference from deaf is that it highlights cultural identity. Like for example the French or the Romani, the Deaf are a group of people with a distinct common language and certain cultural norms and practices. In Swedish this has never been discussed, simply because words for cultural identities aren’t capitalized. It should also be pointed out that hearing loss doesn’t automatically mean that you identify with a cultural community, as not all with the diagnosis autism wish to be called autistic.

These examples highlight that there is no simple way of finding a fitting standardized terminology. A terminology which highlights that which separates a group from the norm can reinforce prejudice and exclusion. On the other hand, a focus on inclusion can itself be discriminatory, because it tends to minimize what it means to have a certain disability. There is no simple solution, and the discussion must continue and include these different and important perspectives.

Annie Mattsson works as a teacher within adult education for people with intellectual disabilities in Sweden. She holds a PhD in Literature, is interested in the history of terminology and is the mother of a child with autism.

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