There have been several comments on my last post regarding my call for “people first” language in any attempts on the part of the NYU Child Study center to raise awareness in future ad campaigns. Several readers have rightly corrected me on this point as it concerns the autism community. To clarify, many readers pointed me towards this post by activist Jim Sinclair, entitled Why I Dislike Person First Language as well as the following discussion of reclaiming tactics in the disabled community. Thanks to Jypsy for pointing me in this direction.
These posts remind me of all I still need to learn when advocating for my son. As a member of the board of directors of the service agency that supports Evan’s needs, I have listened in on many meetings devoted to people first language. As an advocate for my son, who cannot speak for myself, I am forced to make assumptions about how he would want to be identified (rather than labeled or diagnosed). Perhaps I bring to my advocacy a blind spot, if you will, about wanting to see my son as a person first. I know of other mothers of children with Down syndrome, for example, who would assert that same dominance of person over diagnosis, mostly because they (and I) have had to fight with the medical establishment as well as countless professionals to have the person behind (and apart from) the diagnosis seen as a person, rather than a set of symptoms or disorders.
I am reminded in this discussion of sitting on a panel with a disabled adult, one who chastised me for thinking as I did, because I myself was and am not disabled. “If you were the one who was disabled,” she told me, “You wouldn’t be writing or talking about your son that way.” But I can do nothing about being my son’s mother other than hope to become better at everything: advocacy, motherhood, and life.
(NB: If one of my readers would like to guest post on this topic and allow for some further education and awareness, I’d love to have that happen.)
Comments 10
Thanks, Vicki, for posting on this matter!
As a disabled adult and educator (who has to deal with this very often), I’d like to guest-post.
For one thing, the “helping professionals’ ” demands in this area (and their unwillingness to accommodate positions like Jim Sinclair’s) forced me to give up my dreams of getting credentials in special education or OT.
For another thing, that requirement to always place the word “people” first when mentioning disabilities creates some inherent contradictions and difficulties which (as far as I know) its advocates do not acknowledge or deal with effectively — whatever one’s views on the subject, I think these difficulties need discussion and dealing with, not sweeping under the rug.
Posted 22 Dec 2007 at 1:00 pm ¶These difficulties include the likelihood that the rule (to use the word ‘people’ first when mentioning disabilities) creates some unintended and seriously negative consequences which actually increase the verbal stigma. (If you want to know why I think this, make me a guest poster!)
xo – Lisa
Posted 22 Dec 2007 at 5:48 pm ¶Well, in terms of disability rhetoric I didn’t know that people first language meant connecting personhood “with” a disability or a set of symptoms with a “with,” rather than thinking of the whole of that person (that’s what I was thinking of when I complemented it), since the disability is an intrinsic part of that person. But, as a person with a disability (!), that makes sense, since I can’t and don’t and wouldn’t want to–what would the sense of that be?–it doesn’t work anyway– think of myself “apart” from my disabiity. . .thanks for the links to other voices, the learning curve, and the things to think about. . .and the thoughtful, open post.
Posted 22 Dec 2007 at 6:56 pm ¶I’ve been thinking about this quite a bit, the language aspect of it. When you first posted your list, I wasn’t sure what “people first” meant, but now I do (thanks for the links). When I was a medical copy editor, we were trained to make sure the person/patient was included. An appalling number of authors (who were either doctors or med students, primarily) took the person right out, turning the adjective into a noun, ie, “the autistic” rather than “the autistic person.” We put the person back in. In that regard, I find “autistic person” lightyears ahead of “the autistic,” and I agree with those who prefer that to “person with autism.” I can’t comment on that from a disability perspective, but grammatically, as another of your commenters noted, it sure can get awkward. And I readily understood the implications of the separateness as expressed by Mr. Sinclair.
These distinctions are not nit-picky, and anyone who works with words needs to pay attention to them. What strikes me is how, whatever the circumstance, a label applied by someone else without permission or input is always going to rankle. We all of us want the right to identify ourselves how we see fit, and all groups have had the experience of being labeled in ways they do not choose. (I, for one, hate being called a SAHM–that’s in a different sphere entirely, but it’s not a label I choose for myself, it’s one applied to me.)
Back to the grammatical implications–one author of an article that included breastfeeding was quite upset when the copy editor went through and hyphenated it throughout. In the breastfeeding advocacy world, it’s not hyphenated, because they feel it’s a continuous relationship and process, unlike bottle-feeding. From both a copy editing viewpoint and that of a mother who breastfed well into the toddler years, I agree. Anyone can bottle-feed; only the person with the breast can breastfeed. This differentiation in hyphenation isn’t intended to insult anyone who bottle-feeds, but it’s an important point, and not nit-picky at all, to those who are in this advocacy position. I notice these hyphens. It tells me quite a bit about the viewpoint of the author/publication. (Because of that author, and her education of the copy editors, the hyphenation was removed throughout the site.)
Sorry for such a long comment. But our words and how we choose to use them, especially in print, is so important.
Posted 23 Dec 2007 at 9:03 am ¶Amy,
Your comment is worth a post in an of itself. I hope everyone reads and appreciates your thoughtful consideration of the isue.
Kate,
I’d love to have you guest post. Send it to me and I will put it up under your name!
Posted 23 Dec 2007 at 12:36 pm ¶Wow. I am trying to understand all of this. I look forward reading your guest posts on this issue. I do find it all pretty confusing but want to learn.
Posted 24 Dec 2007 at 8:15 am ¶I’m a mom who prefers to call her son a child first. I do this because he’s small, still, and unable to decide how he wants to be refered to. It’s my opinion that he thinks of himself as a child, like his brothers, and so that’s how I address him, and too, how I prefer others to address him. So we are left with the awkward language of “a child with Down syndrome,” but it’s my best choice, for now.
Of course, when he is old enough to decide for himself what he prefers, I will honor that.
Posted 24 Dec 2007 at 12:14 pm ¶I’m reminded of the AIDS activists back in the 80s who objected to “AIDS victim” and preferred “person with AIDS” or “PWA.” That was my first experience with person-first language.
My young adult clients with autism (aka autistic clients) would take both sides of this debate. They identify as autistic people, not people with autism, but they also become less and less concerned with autism as they get older and become more and more just people who have quirky brains. As one young man told me recently, “at a certain point you just kind of move on from the autism because you’re thinking about other more important things.” Also, they would refer to people with typical brains as “typical” or “neurotypical,” not “people with typicalness.”
Merry Christmas!!!
Posted 25 Dec 2007 at 10:39 am ¶Its difficult being an advocate for your child especially when they are non verbal. When you think you have got it right someone somewhere will tell you its wrong!
Posted 29 Dec 2007 at 2:38 am ¶An interesting and important issue.
Have you seen Gillette’s new cure pity campaign? It is fabulous. See http://www.curepity.org/.
Happy 2008!
Posted 03 Jan 2008 at 6:45 am ¶Post a Comment