Person-First Language: A Reflection and Apology

I’ve had my eyes opened about person-first language.people-first language

Person-first language is a specific way of speaking about people with disabilities. I just used it, in fact, when I said “people with disabilities”. By putting the person before the condition (for example, referring to myself as a “person with disabilities” instead of “disabled”), I affirm my personhood before my condition. I stress that myself and others that I am more than my disabilities.

Readers that are familiar with person-first language likely notice that I use it constantly in this blog. I’ve never liked the term “disabled”, personally. It has negative connotations for me. Particularly right after my stroke, I was hell-bent on distancing myself from the idea that my new physical limitations prevented me from doing what I wanted to, so I wanted my personhood affirmed before my disabilities. I wanted those disabilities to fade into the background as much as possible – not because I saw them as intrinsically bad, but because I wanted them to just be irrelevant.

The Debate About Person-First Language

From the time that I started volunteering with agencies that support with disabilities (there I go again) when I was fifteen, through my developmental services worker training, through my paid employment, the importance of person-first language has been drilled into me. It’s automatic. I’ve read blogs that use “disabled” rather than “person with disability” or “Autistic” rather than “person with autism”, and just thought, “Tsk, tsk, no person-first”, or assumed that the writer hadn’t been educated about it.

After all the times that I’ve said to ask, not assume…shame on me.

A few days ago, I read this post by Lydia Brown over at Autistic Hoya, and had my mind blown:  http://autistichoya.blogspot.ca/2011/08/significance-of-semantics-person-first.html

I had no idea that so many people felt so strongly about being called “Autistic” as opposed to “person with autism”.

I hadn’t considered the idea that person-first language, for so many disabled people (Autistic, Blind and Deaf people in particular) does the opposite of what it’s intended to do.  And I see their point. When you see autism, for example, as part of what makes you who you are, then attempts to compartmentalize it from your personhood are…insulting. They imply that there’s a “you” that exists uninfluenced by autism and its effects on your brain’s wiring. They also imply that there’s something wrong with autism, that your “personhood” would be enhanced without it.

Lydia and other bloggers that I read on this subject made the argument that we don’t use this sort of terminology with any of the other identifiers in life. I do not say, “I am a person with Canadianness/disability advocateness/writingness/daughterness/sisterness/sister-in-lawness/ auntness/ friendness”…I say, “I am a “Canadian/disability advocate/writer/daughter/sister/aunt/ friend”.  You can’t separate me from these things, any more than you can separate an Autistic person from autism.

And I know from experience, from listening to others, from writing this blog and reading other blogs, that I can’t make my disabilities irrelevant. They do affect my experience in this world, no matter how much I wish they wouldn’t. I know that person-first language has not made the “personhood” of disabled people safe from poverty, abuse, assault, and even murder, just because of their disabilities. I like to think that I’ve moved past the idea that my disabilities are something that I *need* to make irrelevant in my life out of fear of peoples’ negative perceptions of disability, but perhaps it’s time to do some personal reflection on this…and some more intense work on self-acceptance (and my efficacy as an advocate).

I am who I am today because my brain functions a bit differently than other peoples’. I am disabled, and it’s fine.

A Sincere Apology

And I apologize from the bottom of my heart to anyone that’s been negatively affected by my using person-first language in this blog. I truly did not realize the scope of this issue. I do think that person-first language has its own strengths. But because I now know the extent to which the debate over the appropriateness of person-first language affects the autism community in particular, I won’t use it anymore when I talk about autism, and I’m seriously going to reconsider whether I should use person-first language at all anymore.

To some it may sound like an issue of semantics, but it’s obviously anything but for many people. I want to be respectful and not make assumptions. I’m rather ashamed that I’ve gone this long without being aware of the controversy over person-first language. Reading the perspectives of the people who’d rather it not be used has been enlightening and truly humbling.

What are your thoughts on this issue?

Another excellent post by an opponent of person-first language: http://juststimming.wordpress.com/2011/08/23/dear-autism-parents/

 

About Sarah

Due to a stroke, I've walked with a cane since I was 22 (I'm 34 now)...but I'm so much more than just the girl with the cane.

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  • Danni

    I use both, depending on which one sounds best in a given sentence. I’m autistic, but sometimes might say I have autism if it sounds better. I think of eye colour- I’m both blue-eyed and have blue eyes, and can say either and it’ll be accurate.

    I do see autism as being a big part of me, as it affects the way I think and process things, and without it I wouldn’t be who I am. With person-first language I’m happy to go with whatever the individual concerned wants. The only time I get upset about either is when someone else tries to impose their views on others- I’ve been told off for calling myself autistic which is wrong, as it’s how I identify myself.

    I tend to use “autistic people” or “disabled people” over “people with autism” or “people with disabilities”, but it’s mostly because it’s easier to say and sounds better in my head. The big thing I’m against is suffers from- I don’t suffer from autism, or suffer from being disabled, I live my life happily with them. (I do suffer from M.E, but that’s an illness rather than a disability itself, even though it causes disability, and as it causes pain I’m okay with using suffer for it. Autism isn’t an illness, not even a mental one, which a lot of people seem to forget.)

    Hope that’s not too confusing- brain fog is bad today :)

    • http://www.runningsteps.ca/ GirlWithTheCane

      It’s not confusing at all, Dani…thank you so much for commenting.

      I tend to think the same way as you on this – I’d rather go with what the individual concerned prefers. It’s not my right to push my preference on them. Hard to do that on a blog, although I’d gladly ask each person “What do you prefer?” and tailor it to them if I had unlimited amounts of time…

      I don’t like “suffers from” either.

      The people-first does get wordy. As a writer, trying to use people first to describe myself as a stroke survivor, I once found myself writing “person living with the effects of stroke”. The editor in me went “That’s TERRIBLE! Find a better way to say it!” :P I think that’s when I decided that “stroke survivor” was fine.

      I hope that things have been going okay. :)

  • Phil Dzialo

    I’m not a fan of the first person debate. Adam is an anoxic encephalopath or a young man with a…e….. I consider descriptors only for the sake of a dx for governmental supports. Adam is simply Adam…nothing more is needed to describe him, nor desired. A smile, a touch, a meeting of his eyes…labels are for empty boxes or quasi-empty boxes, not people.

    • http://www.runningsteps.ca/ GirlWithTheCane

      So true, Phil. The best way to refer to a disabled person is to use their name. Lydia Brown points out in her blog entry that anyone who works with disabilities and cares about what they’re doing knows this, and I totally agree. Thanks as always for your perspective.

  • Sheila Hamilton

    I, too, must apologize for being a bit dogmatic about person-first language in the past. Probably, I need to apologize for the dogmatism more than the person-first language. I agree that respecting a person’s preference is the most important thing. If my Mom prefers to be Mrs. H rather than Ms. H, than I will address my letters to her as Mrs. H. Similarily, she addressed her letters to me as Ms. H rather than Miss H. I agree that in a blog, using the most respectful language can be challenging. Especially because language is important. Thanks for raising the discussion.

    • http://www.runningsteps.ca/ GirlWithTheCane

      Thanks for your comment, Sheila. I think it’s easy to become dogmatic about disability issues in general. When I did my developmental services worker training, I was *very* dogmatic about standing in opposition about some of what we were being taught. I’ve relaxed about some of it and come to see my teachers’ point of view…a couple of things I’m still just as opposed to, to this day. But I think I’m much more open-minded, generally.

      And you’re right about language being very important. It does make some aspects of writing about these issues difficult to deal with. I encourage people to please start a dialogue with me if they feel that there’s an issue with the language in this blog…I really do want to keep on top of this.

  • http://twitter.com/goldfish The Goldfish

    Sorry to be slow to comment here – I wanted to when you first posted but was completely snowed under.

    In the UK, using “disabled people” is much more common, because of the Social Model of Disability – the idea that we all have conditions or injuries or illnesses and what have you, but the thing that unites us, the thing that we can present a united front against, is that society disables us. So we’re disabled people in the same way a person might be black rather than a person with black or brown skin – blackness is a social status, not a physical description. My friend Lisa wrote a good article about this a week or so ago.

    However, although the language we use is very important, it’s also personal. So although you can take steps to make sure you refer to another person in the language they prefer, and we must all avoid language which we know to be offensive, all of us are likely to use some terms which others aren’t all that keen on. For example, there are quite a few differences between British and American use of language around disability, but we demonstrate that we’re all on the same side with everything else we talk about.

    So in the same way it’s good to avoid being too dogmatic about language (every Blogging Against Disablism Day, I ask for a language amnesty because there’s so much variation and every year I see comments criticising the language people use to describe themselves), I really wouldn’t feel too bad about slipping up in the past – this is about word order, rather than offensive language or problematic ideas.

    • http://www.runningsteps.ca/ GirlWithTheCane

      I like the idea of language amnesty, Goldfish, particularly for blogs. As you said, language can vary so much from country to country…I think it’s an area where we really can focus on intent for issues like this one (respecting peoples’ stated preferences, of course…I know that Lydia does feel very strongly about “autistic” as opposed to “person with autism”, so I would want to respect that while commenting on her blog).

      Thank you for the link to the article. I’ve been thinking about it a lot since reading it. I want to write something about it once I get my thoughts together on it.

      I love Blogging Against Disablism Day, by the way. I read all the entries last may and I was sharing them on the Girl With the Cane Facebook page for weeks because I was so excited about them. :)

      Thank you so much for your comment.

  • lil

    Regarding the “R” word, I’ve been told that medical providers in the US are told only to use it in the form of “person with mental retardation” and never “retarded patient.” The solution there might be to get rid of that word as a medical term completely, and give it time/space to be more fully reappropriated and transformed by people who are directly affected by the term’s sting.

    • http://www.runningsteps.ca/ GirlWithTheCane

      I agree. I would never, and never suggest to anyone that they use the word “retarded patient”. “Retarded” is now such an emotionally loaded word that it simply isn’t appropriate. I know that “mentally retarded” still does get used as diagnostic criteria in some circles in Canada, and I really wish that the medical and social services community would, as you suggest, just drop “mental retarded” and “with mental retardation” as diagnostic criteria, Some self-advocates in agencies in which I have worked have said that they prefer “intellectually disabled” or “person with intellectual disability”, but the younger people with which I’ve worked don’t like the idea that they have a disability. They seem to have assimilated some of society’s negative attitudes about people with disabilities…it’s sad to see.

  • Alyssa

    Just found this one of yours. I use Autistic unless the person I’m talking about prefers person-first, and “with disabilities” for disability as a group since it seems *most* disabilities have that as their majority preference. I mean, I prefer to be *called by* my name, but for when Autistic is a relevant descriptor? Yeah that’s the way I want it said. And I’ll respect others preferences for what they want to be called, expecting the same respect for me.

  • http://www.disabilitythinking.com/ Andrew Pulrang

    I found this when visiting your blog for more recent stuff. I’m glad I found it, because I tried blogging about language earlier this week. I purposefully took a disorganized, bullet points approach because I had trouble tying all of my thoughts together. You did it really well. What are your thoughts on “super-positive” language, like “differently-abled” and “disABLED”?

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