Language matters. The way we communicate with each other in words, the language that we read, hear, see, watch, matters, and shapes who we are as a society. The old adage “sticks and stones may break my bones but words will never hurt me” might be good to hear as a small child facing tough situations with friends, but really, it’s not true. Words do hurt, and knowing which ones we use, when and why, is complicated.
In fact, some words hurt so much that we have taken them out of mainstream vocabulary, to replace them with just their first letter. We all know about the n word. I hope we all know about the r word, but do you know about the s word?
The s word, spaz, came into the news recently as Lizzo had included it in one of her lyrics. So strong was the response that Lizzo took back the lyrics and changed them – and I’m glad she did. It was the right thing to do. But this isn’t one of those “celebrate the non-disabled person for making the change” posts. This is a discussion about the language we use as disabled people, with disabled people, and about disabled people.
Some of you maybe wondering what the problem with spaz is. Well, it means spastic, to have muscle tone in your body, making your limbs stiff and jerky. It’s a disability, and the people who have it the most are those with spastic cerebral palsy. In fact, in the UK, the disability charity SCOPE was previously known as the Spastic Society, and in some countries, their main cerebral palsy charity still goes by that name. So, when you make fun of jerky movements, talk about someone being a spaz because they dropped something, this is what you’re making fun of.
People with MS, like me, can also have spasticity. My limbs don’t jerk, but they get stiff, and at night my legs fold up. However, I also need some of that high muscle tone, to be able to transfer from my wheelchair by myself. It’s a balance with the drugs I take – too much, I’m a limp noodle, too little and I’m stiff as a board. So, spasticity for some disabled people isn’t all bad – you just need some, not too much, and to be able to control it.
Reclaiming language, and in some ways controlling its use, has become an important part of marginalized identities. For example, at one point “queer” was only used in a derogatory manner towards the LGBTQ+ community, but the use has been reclaimed by the community to such an extent that it has become mainstream, with TV shows like “Queer Eye”. In the disability community, the term “crip”, from cripple, has also been reclaimed, with “Crip Camp” being nominated for an Oscar, #CripTheVote being used to mobilize disabled people to vote for candidates that support disability rights, and crip culture becoming more and more mainstream.
But it’s not as straightforward as just knowing which terms are currently in favour and which aren’t. Language is complex and it evolves. If you have been noticing the terms I have used so far, you may wonder why I say “disabled people” and not “people with disabilities”. It’s not an error – it’s a conscious choice. I go with what is known as an identity-first use of disability, because I believe that disability is constructed by society and context – more on that coming in the next section! But, you will have noticed I also used people with MS – which is called person-first. It puts the person before the disability. Why do I do that? Well, MS person just sounds a bit odd to me!
It’s not just me that thinks like this about disability language. There are many academic articles, blog posts, podcasts written about disability identity and the language we use – it will crop up wherever we communicate, of course. This excellent article from Dr Colin Cameron really digs into why identity first is so important to many of us – because it is intrinsically linked to the social model of disability. The social model says that our impairments become disabilities when barriers are put in the way. So, my mobility is an impairment that I use a wheelchair for. It only becomes a disability when faced with stairs. As Dr Cameron explains, person-first language, persons with disabilities, places the disability on the person, the individual, not society. This is the way the medical establishment talks about disability – as problems attached to the individual. This article also has links to other writers’ thoughts on disability and language, so it’s a great place to spark your curiosity on these ideas. This article, from Molly Callaghan at Northeastern University, looks at disability language specifically from the viewpoint of autistic people, and talks through the issues raised in their community when they published articles that used identity-first language. I find it fascinating when they say “that choice of words [identity-first] proved objectionable to members of the broader community of people who are affected by autism in some way, whether as family members or professionals in a disability field. “Generally, it’s the people themselves who prefer to be called ‘autistic people’ and caregivers and professionals who prefer ‘people with autism.’”” It makes me think about whose language this is – does it belong to disabled people or to everyone else. In fact, our choice as disabled people to use identity-first language is at odds with “international standards” – but that doesn’t make it wrong. I would say that the inflexibility on language choice, and choosing to frame disability only as person-first perpetuates that individualized, medicalized model of disability that many disabled people reject vehemently.
Does this feel like a minefield? If you’re not disabled, are you now worried to say anything? Have no fear! Dr Mary Ann Coll, from Queen’s University has a very straightforward guide for you, where she gives some really good advice on how to approach issues of language and disability. I’m grateful to see it, as I think we all need to talk about these issues more often, so that we can dissolve awkwardness around the ways we communicate.
There’s one rule. If you are ever uncertain about how you should address the disabled person you are talking to, the simplest thing is to ask. They will tell you what they would like you to use.