August 19, 2008

Pet monsters are a lot of responsibility

Okay, so let's talk about People First Language.

I've seen it presented as a sort of universal truth, as if the rightness of People First Language is a given, with little room for argument. People First Language must be used, I read time and time again, like a moral imperative. The heartfelt and dedicated advocates of People First Language want very much for it to be accepted as a standard practice. Indeed, they often insist on it. But it's not universally accepted, although people who find it troubling are often nervous about discussing why. I'm a little nervous about writing this, to tell the truth, and we all know what an ass I can be.

The idea behind People First Language is simple, and inherent in the name of the concept. It puts the person first, allowing their basic existence to define them before their disability. People First Language describes what the person has, but not who that person is. By these rules, I am not a diabetic. I am a guy who has diabetes. The thinking behind People First Language says that identifying a person by their diagnosis can generate fear and pity, and works against the goal of inclusion. People First Language grants a person dignity, the thinking goes, by blunting the impact of their diagnosis on that person's self-image, and also in how they are perceived by the world.

"It's not 'political correctness,'" writes People First Language advocate Kathie Snow, "but good manners and respect."

Perhaps. I do see the point, and insofar as I think these kinds of perceptions are important issues, I can see some of the benefits of People First Language. I don't want Schuyler to be hurt by the world around her, and I certainly don't want her disability to make her feel like there's something wrong with her.

But here's the thing. As hard as it may be to admit this, there is something wrong with her. And admitting that she's broken on some level is difficult, and it feels harsh. But it's a harshness that comes from somewhere else, from whatever power you think hands out that kind of Very Special Gift. God if you believe in him, Fate if you don't, or just random shitty luck if that's how you roll. And the thing that it's easy to miss, because the idea breaks my heart too, is that no one is more aware of Schuyler's disability than Schuyler herself. When you think about it, that seems obvious, but for those of us who love her and care about her, it might be much easier to accept if we could adopt language that takes some of the sting out of her reality.

People First Language attempts to soften the language that we use to describe disability, and I understand why that's tempting. But in doing so, it doesn't blunt the monsters, not even a little. If you say, as People First Language instructs, that a paraplegic is NOT confined to a wheelchair or is NOT wheelchair-bound, but instead refer to them as "an individual who uses a wheelchair", you have taken away that wheelchair's power over that person in perception only. It even implies choice, at least in my opinion. I use things, and I use parts of myself, with intent. I don't think I'd say I use my heart, or my kidneys, because I am not given a choice, but I do use my legs. I choose to use them, and I can choose not to.

That sounds like I'm being obvious and glib, but it bothers me, and for some very real reasons. Because when you take away responsibility from the monster, who are you going to give it to? When you say that a person uses a wheelchair, you are setting up ownership of that disability. The monster doesn't have you. You have the monster.

But do we really want to hand ownership of that disability to a child who is struggling to understand their place in the world? Does handing responsibility for a disability over to the child give them an unreasonable sense of their own role in the possession of that disability? If you're using a wheelchair, then why not just stop? If that sounds silly to you, ask a now-grown child of divorced parents if they still, even if only in their secret hearts, take some measure of responsibility for their parents' breakup. Ask an adult with a disability if they ever wondered as kids what they did to deserve their situation. Ask them if they ever wonder that now.

If Schuyler isn't "non-verbal" but instead "communicates with an assistive technology device", then why? Why would she do that? If Schuyler doesn't feel like she is in the clutches of a monster to whom she brings the fight every day, that's great and my biggest dream made real. But if she then comes to the conclusion that she owns that lack of speech, then what can be the reason for its persistence? Is she not trying hard enough? Why isn't she fixing the issue herself? If she's not broken, then what's the problem? Lack of motivation? Is she simply not good enough? Not strong enough, or smart enough, or brave enough?

Schuyler as the victim (another word forbidden by People First Language) of Fate and its monster minion, as sad as that may sound, is infinitely preferable to Schuyler as the product of her own subtly-implied failure. I simply won't have it, any more than I'll have the idea of "acceptance" stand in the way of her hard work, and of ours. To my thinking, People First Language sets up an unreasonable expectation, taking the responsibility away from unfair forces at work in the world and instead laying it squarely at the feet of the very last people in the world who deserve to wonder if they somehow had this coming.

And don't even get me started on the ridiculous and unwieldy term "nondisabled" to describe neurotypical or "normal" people. That should offend anyone who loves the English language.

Listen. I get why people use People First Language. I understand the push to bring sensitivity to an often cold world. That's something I fight for as much as anyone else, after all. I wrote an entire goddamn book about it. But please try to understand, people. Don't just try to make it feel better. Don't blur the lens, don't make pretty words do the duty once performed by ugly ones.

"Retard" is an offensive term, I think we can all agree. But in its own way, I find "differently abled" or even "special" to be far worse, because they minimize the struggle. They allow the rest of us to sigh and wipe away a tear while we watch some very touching report on the Today Show, and then say "Wow, thank you Meredith, for showing me the story of that brave little trouper!" And then we go on with our lives, knowing that someone is watching out for that precious little angel. Someone like Jesus, perhaps, or one of his dedicated soldiers on earth.

Or someone like me. Or you. Or no one at all, no one except the person who lives their life confined to a wheelchair or suffering from a debilitating condition that makes a nightmare out of the things that you and I take for granted, the everyday tasks and activities that give us our humanity, and can rob us of it when they are taken away.

I helped Schuyler take a preliminary eye test today, in anticipation of an hour-long appointment later this week for the glasses that she'll apparently be getting soon. I held her device for her while she identified the letters on the wall that she could read. She did a great job, and I was incredibly proud of her. She's making her way in the world, and she'll continue to do so with determination and enthusiasm and even optimism, but she'll also do it with a big dose of "fuck you" when needed. And she's not going to get that from People First Language. Kind words aren't going to open any doors for her, not a one. They might simply make her feel like a failure for being unable to open them herself.

Ultimately, People First Language feels to me like it exists not so much to help broken children like Schuyler, most of whom I suspect are tougher and more pragmatic than the people who love them perhaps realize. I think it works mostly for the people around them, those of us who aren't afflicted and yet lead lives forever changed by disability.

People First Language probably makes that life a little easier for the rest of us to bear, but honestly, I'm not sure it should be easier for us. In that respect, I'm not convinced that People First Language is putting the right people first.

74 comments:

kc said...

Hell yes.

Not coherent enough in my own thoughts on this subject to explain WHY exactly this post kicks so much ass... but for the moment I'll settle for telling you that it does.

Thanks.

Lauri said...

Interesting... great post

queencallipygos said...

I was in college during the highwater mark of the Politically Correct movement, and while I understood and supported the motivation, I never understood how the movement didn't see that it was missing the point.

Changing the words just doesn't work. The example I always used was that, look -- I don't like it when people tell me "you Micks are all always drunk." But it's not the fact that they used "Mick" as opposed to "Irish-American" that I don't like, and someone saying "you Irish-Americans are always drunk" isn't anything I'm going to like either.

The argument is that if you change the language, people's perceptions will follow. But it just doesn't work that way, because the people who are determined to think ill of others will just find other words to use.

True, there are some words that are just plain cruel. But it's the context, and the intent behind using them, that makes the message. Focusing just on the words fails to address the minds of the people who use them to wound, and falsely accuses people who've used them for another reason -- say, they way Holden Caufield or Huckleberry Finn used them -- to make a point.

Liz said...

Yes, that's it exactly, Rob. Beware of language intended to shield normals from the harsh realities of the world rather than empower the disabled.

I don't think that's their intent, but it's the end result. The struggle is to get people to recognize that a person's diagnosis shouldn't be used as a noun, but as an adjective -- and only one of many, each of which is important to them.

Schyuler, in many ways, is like my own daughter. They are beautiful, clever, spunky, independent, funny -- and yes, broken.

Thank you.

Anonymous said...

Thanks for this post!

I've often had similar misgivings about "People First" language. No one in my life has a disability, but as a newspaper reporter, I write a lot about education and advocates for people with disabilities. After several years on the job and handling these beats, I feel forced to use "People First" language. But it's frequently misleading and limits my ability to describe things in a clear and frank way.

Very recently, while writing an article, I found myself stumbling when typing the appositive, "who uses a motorized scooter to get around." The man I was writing about is an advocate for people with disabilities, and if I'm not very much mistaken, is the one who first explained "People First" language to me and asked me to use it.

This guy doesn't use a wheelchair, he uses a scooter, a device often used by choice. For this man in particular, the scooter is a choice he's made over a wheelchair, but he'd need some assistance either way. I didn't feel like I could explain that in my story while bound by "People First" language, and it really got under my skin.

I've had similar problems of description when writing about autistic children and educational programs for children with special needs.

Thanks for being so frank and real about what it's like to be a "shepherd of the broken." Your outlook is refreshing.

Monroegirl said...

Amen! I have this argument with people ALL the time....calling Mas "special" is a crock. I'm glad you chose to address this. You explained it better than I usually do, and I understood exactly where you are coming from. Using this language just helps the normal people feel empathetic. Strong work!

Tracy said...

I have several problems with People First.

One of them is the primary slogan they use, that "Disability is Natural." Because, it's not. It's common, to be sure -- and I hear the point that Kathie Snow is trying to make about how a disability is the only minority class that one can enter at any time, and that one in five people has some sort of condition that qualifies them for entry.

But that sure as hell doesn't make disability "natural." I would hazard a guess that parents of kids born with special needs feel that it's anything but natural, that they don't wake up everyday and think, "Thanks, God, for making my kid so naturally special."

Can there be beauty in the differences? Of course. But beauty ≠ natural. Snow's use of the word "natural" seems to me to be a perilous substitute for the word "normal" -- which again seems perilously close to the same stubborn principle that leads some deaf people to refuse hearing aids or surgery -- "I was meant to be this way, you shouldn't try to improve me." Witness this deaf couple who actually hoped to bear a deaf baby. http://www.guardian.co.uk/society/2006/mar/21/health.lifeandhealth WTF is that? Other than selfish?

It seems to me as though someone who needs to reframe their own situation in words intended to make their situation more acceptable to society aren't really as secure and comfortable with it as they claim to be. I don't care whether you're deaf, blind, paraplegic or purple-spotted.

Plus, the site and the "movement" make me uncomfortable. My main takeaway was not, "Hmm, an interesting new dialogue about the dialogue of disability," but "Gosh, Kathie Snow has a store and t-shirts and a slogan and a logo and everything. Wonder if she's counting the days till she lands on Oprah?"

There's nothing wrong with her idea... I just feel icky at how hard she's working to monetize it, and position herself as the next great thought leader in the special needs community. There's nothing ground-breaking in Snow's concept; like she says herself, it's just good manners.

But the real good manners is speaking about a person -- whatever her abilities -- as that person herself prefers. There's no one-size-fits-all language that automatically confers sensitivity. For Snow to try and force her brand of language on everyone is just as bad as anyone else forcing "special needs" and "differently abled" and "precious perfect angel just as God intended" and all that other coddling folderol.

I think I had other thoughts, but I can't remember them till I've had coffee, and plus this has already gone on long enough. (Sorry if the link broke your comments, R.)

Laura said...

Rob -- I think you did a great job of explaining why you feel the way you do, while acknowledging the positions of others. (Honestly, you've always been a good writer, but post-book, it seems like you're even better. Not kissing up -- just true.)

the center of attention said...

I was waiting for you to discuss your opinion of People First Language, because after reading through the literature I wasn't exactly sure how to explain my misgivings. As always, your point was well made, and I agree. I also find a problem with this sort of disowning of a disability/illness/problem, because for many of us that disability has helped define us and make us the unique individuals that we are. I'm sure Schuyler would be a wonderful little girl without her monster, she might not be as determined, as much of a fighter, or as creative in how she makes her way in the world. I know that I do a good bit of explaining that I have rheumatoid arthritis when people catch me limping or with a particularly vex some joint wrapped in an ace bandage, and it often confuses people because I'm young and not supposed to be crippled with arthritis yet. I obviously hate the disorder, but I know that I wouldn't be the same person if I hadn't had to fight through it for so many years before my diagnosis, and as much as I sometimes don't want it to shape my life, it does. I have to own it, not just accept it, because you're right, I can't just walk off and leave it behind. There's no choice involved. It's there, it always will be there, and there isn't a pretty way to keep it from being a part of who I am.

I also agree that so much of this sort of thing is about the people on the outside. I've read many essays where people choose to use the term cripple to describe themselves because it's accurate and comfortable for them to acknowledge their disability. Other people are uncomfortable with it, because of whatever baggage these sort of words carry around, and forget that in some cases they're the best way to really accept what is broken.

(I've probably muddled this comment something awful, but it's hard to just go off the top of your head about this kind of topic. I had to let you know I agree, though.)

Anonymous said...

Awesome post, AWESOME. Totally agree! No matter what words I use, my son is still deaf, he still has cerebral palsy and people still look at him like he has three heads. (and no, he doesn't).

OM

Sara said...

"It's not 'political correctness,'" writes People First Language advocate Kathie Snow, "but good manners and respect."

Shouldn't it be 'Kathie Snow, a People First Language advocate'.

And for me, it is easier to say a diabetic than a person with diabetes, so that is what I say.

badmama said...

I don't have a problem with it. My kid is a kid. She has a disability, but she is primarily a regular four year-old who likes princesses and skeletons and refuses to go to bed on time. Maybe because her lack of ability to run and jump will be less of an obstacle to her as an adult (most adults in this country, after all, avoid running and jumping at all costs) than Schuyler's speech problems will be to her, it's easier for me to see it that way. It's easier for her to "pass" in many instances, I suppose. But until I encountered this phrasing, I was always uncomfortable with calling her a "disabled child". It seemed to set her apart in a way that "child that uses a walker" doesn't. I don't agree that it keeps people from the harsh realities of her disability, it just seems a more accurate descriptor to me.

I do have a problem with people who use "People First" language and think that makes them enlightened. I encountered that when looking for preschools for my kid (no, if your elevator is out of order due to renovations for the year and you have a giant play loft that my kid can't get to, your school is not "fully accessible", even if you have handrails in the bathroom.) I also have a problem with someone who is outside the group in question and feels entitled to tell others inside the group what should or shouldn't offend them, because it makes their lives more difficult to accommodate said language or images. Your gift, Rob, is that you have been able to demonstrate to people so clearly how normal Schuyler is in most of her life without using that sort of language. For people who are just learning to see that a human being has worth even when they can't speak or can't walk or whatever, I think "People First" language is an important step, but I don't think any reasonable person believes it will do anything alone.

Liana said...

When I went to the "People First Language" website, one quote that jumped out at me was: 'Are you "myopic" or do you wear glasses?'
Uh- I'm nearsighted, which means the same as myopic. That's what I've been since I was 10 and I will continue to be so for the rest of my life (unless I have surgery and it works, I guess)...How I live in this world is obviously affected by being nearsighted and using one word- myopic or nearsighted (and more people know what the word "nearsighted" means) easily and neatly expresses that my experience of the world is different than those with NORMAL vision...and yes, there is a normal- and being nearsighted isn't it. *sigh*
In other words, I agree with you, Rob. Very clear and well-written post :)

Taryn said...

It's simple, I AM near sighted and I AM legally blind, defined as 20/200 vision or worse, I can't see the giant E on an eye chart or much else but blurred colors with equally blurred general shapes, without my glasses.
I am those, they are part of me and one of the first things people notice about me is that I have glasses. With people first language it's makes it sound like I choose to use glasses. Let's see I can choose to wear my glasses and live a 'normal' life and be able to see or I can choose not and not be able to see anything that isn't literally right in my face, and even then I might not be able to see it clearly. I don't choose to wear glasses I wear them, I don't have a true choice in the matter. I rather like being able to drive and see other things like faces clearly. Without my glasses faces are a giant blur with black holes where their eyes are, so it essentially looks like no one has eyes, it bugs me and kind of creeps me out. Not to mention the safety factor, if I can't see then I can't see cars(other than a blur that might or might not be moving, I can't identify it as a car) and other things that might injure or kill me.
My son has food allergies, he is so allergic to milk that if has any he will literally die. How do you put that in "People First" language and have the impact of the fact that him consuming milk will literally kill him. There isn't a way to do that. He doesn't choose to avoid milk, he can't have it, even at the age of 5 he understands that he doesn't want to die or end up violently ill.
Am I truly responsible for being near sighted? I didn't do anything to mess up my sight. My mom wears glasses and her sight is even worse than mine. Genetics, that is what caused it and I don't think I'm in any way responsible for my genes dictating that I can't see without glasses. My son was born allergic to milk, we found out about the allergy when he was 1 day old and a nurse gave him a bottle of formula without our permission knowing darn well I was breastfeeding, is he somehow responsible for his food allergies, if there is anyone responsible then I guess that would be me for giving birth to him or my ex and I for having sex.
I agree that 'People First' makes it sound like it's a choice instead of a fact of life and places way too much responsibility on the person.
My boyfriend has several qualifications for a handicapped placard for his car, lung disease, neuropathy(non diabetic), a severe back injury. What does he call his placard? He calls it his 'gimp sticker.'
Also, no matter how you change the wording the insensitivity will always be there and say stupid insensitive things no matter what you the current 'correct' terminology is, this won't change it, like they are actually going to use it and it really just sugar coats the disability. A monster is a monster no matter how much you sugar coat it or choose to call it.

Andrea said...

Hmm. See, I think it can be both.

I'm diabetic. I'm neither A diabetic nor a 'person with diabetes.' I'm diabetic. It's something about me, it certainly isn't all of me. Ultimately though I don't care which terms people use to describe it, so long as their actions reflect some sort of englightenment.

I'm also a person who uses an insulin pump. And while there is arguably more choice in my decision to use a pump (since theoretically I could use shots and still not die), I don't see that calling myself a "person who uses an insulin pump" somehow makes it seem as if I am choosing this in the way that someone might choose to ride a motorcycle to work. If anything it's the opposite: I tell people I'm on a pump and they immediately assume that the diabetes must be really, really bad. (I could die any minute! Panic!)

I don't see why it can't be both, frankly. I'm diabetic and I use an insulin pump. They are both true and accurate.

My daughter is a dwarf. This is far more loaded for me. I really don't know that I feel good about using it, except that I have no other options (it's an undiagnosable form so I don't have the choice of substituting something long and latinate). But she's not just "short" and most people don't know that "little person" is the PC version of dwarf so if I use it they figure I'm just calling her a kid, which she is, but that's not what I'm getting at. Still, dwarf. Sleeping Beauty and Lord of the Rings and all the rest of it. If I had a word with less baggage to use, I might.

You've made the point a number of times that you don't agree with acceptance, and I see that your decision to fight hard has reaped many benefits for Schuyler, and that's fabulous. But I truly don't see why it can't be both--if not in Schuyler's case, then for the Movement at large. What does fighting get me for Frances? Am I going to convince her genes to get her another six inches? Unlikely. In her case, where whatever difficulties she faces will be due almost entirely to the prejudices of other people, acceptance is the only route that is likely to help her at all.

So why not both? So-and-so is a paraplegic who uses a wheelchair. Whats-her-name is blind and uses a cane. This-other-guy is deaf and has decided he can live that way very well, thankyouverymuch.

Why not both? Why does it seem that each side needs to prove the invalidity of the other side? Why can't we just use the language that is more appropriate, accurate and helpful in whatever the situation is?

Billie said...

Gosh. I'm kinda torn on this one. Maybe I could understand where you are coming from if my daughter WAS "confined" to a wheelchair and "suffering" from cerebral palsy. But the truth is that she is a little girl. One who happens to HAVE cerebral palsy and uses a wheelchair.

I'm not a religious person. I don't believe in following any doctrine/religion/political dogma blindly, and I certainly don't subscribe to the "person first" philosophy wholeheartedly, but I do see it's place.

When I, or you, or any parent of a child with a disability, describes their child using a list of disabilities, I cringe. If I described Eden as a deaf spastic quad with failure to thrive, you'd have a really skewed, and entirely incorrect perception of who she is.

This is how I see "people first." Not as an attempt to minimize her struggles, or hand responsibility for her disability to her, but rather as a way to make sure SHE, the sweet, silly, quirky, beautiful little girl that she is, is represented as well.

Thanks for the post. Very interesting and makes me think...

Sarah S. said...

I had a related moment with my hubby about PC terms and how they seem to just turn into new epithets rather than do anything useful for people. I think I wound up saying something like "well, the term retarded does lend itself to being used on a playground rather nicely, so it makes sense that we've come up with other words for it like developmentally disabled."
When I was growing up, we lived in a very PC community setting. The few times someone called my brother retarded (he has Down Syndrome) they were immediately corrected, and not always by me. Frankly, I think it has made it a lot harder for me since he was always referred to as "special." I desperately wanted to be the special one because being "special" meant getting the attention, the preferential treatment, etc., when it would have been better if I was happy being smart and funny and myself rather than wishing I were "special" and deserving of those things. PC and People First language are both misleading for somebody, even though they are both necessary in some situations. I definitely agree with identifying the person as not responsible for their disability, though. Nicely put, and good for Schuyler on getting ready to sit through the eye exam. I hope, if she needs them, she gets cute hipster glasses :)

eeminy said...

Huh. You took a different tack than I expected you to when you mentioned earlier that you were working up a post on People First. Same conclusion, but different arguments.

The thing that concerns me about the People First language approach is that downplaying someone's ability makes it potentially more difficult to fight for the legal and social accommodation that will allow the person to actually lead a fuller, more independent life, which to my mind is more substantial than merely describing it.

Especially after reading some of the comments to this post, I also wonder whether People First advocacy correlates at all with how visible or invisible a disability is. Someone whose disability is immediately apparent will tend to be categorized by others in terms of their disability, and I can see how they could want to mitigate that and educate others by using carefully chosen language. Someone whose disability is less visible, though, may on occasion want to firmly establish their disability as part of what defines them, since others won't necessarily notice or understand the repercussions on their own.

PeanutandSweetPea said...

Going to be a bit of a devil's advocate. First off, I really have not read a lot about People First language, so shooting from the hip here a little bit. But if it is about not seeing the person as only their disability/differentness then I can see some benefit to this language. I do remember not that long ago a post that you redacted where you were pretty upset about an incident that you seemed to feel Schuyler was being seen only as a physical trait that is an expression of her Monster. It hurts when people are labeled by their physical or emotional/cognitive/mental etc traits and not see the other traits that are beautiful. As a nurse, I can say that we can tend to simplify our patients down to their current diagnosis..."The hip patient in room three." This does not look at the person but their disability at that moment, and really seems to dehumanize them. So perhaps the intent is pure to have those with disabilities seen as a whole rather than just the broken part.

I do believe though that using people first language to minimize the impact of the "brokeness" a person experiences, to wrap it up in a pretty word package for those on the outside to feel more comfortable with is not good and does nothing for the person who experiences the disability. Or worst of all, to somehow indicate that there is some kind of a choice or personal responsibility in the disability is a burden no one should have to carry.

I think it boils down to this: I think it is easier for me to call my son broken and to personally experience that brokeness with him and have simpathy and compassion from a mother perspective than it would be for me to hear an outsider call him broken. I can call him that, but it would be hard to hear others describe him as such and stand to defend those who would simplify him to simply his disability.

Just my two cents.

Amanda said...

From a purely linguistic standpoint, the whole "People First" ethos strikes me as kind of Romance language-y what with nouns subsuming the adjectives within sentence structure. And that just registers as cumbersome to ... well, non-native-Romance language speakers.

I was just helping my husband with his resume; and, in his field (he works with developmentally disabled adults -- that is adults with developmental disabilities) , People First language is pretty much the standard, at least when it comes to professional-level communications. This presents a lot of syntactic challenges and, frankly, makes my husband seem like a bit of a heartless automaton on paper (as does the fact that his employer insists on referring to the people he serves as "consumers" because "clients" is, somehow, demeaning. At leasts "clients" gives them some agency, am I right?).

Leighann said...

I get what you're saying, but at the same time, if people want themselves or their children to be seen as people before they're seen as disabled people, I don't see any harm in it. The language doesn't change the reality for them or anyone else, but for people who don't want to be seen entirely in terms of their illness, those words matter. maybe when Schuyler grows up she won't want you to call her broken, despite your good intentions. It's just a matter of personal choice.

Amanda said...

And, to Taryn:

As the parent of a young child with multiple, anaphylactic food allergies, I can definitely identify with your frustrations. My parents-in-law insist on referring to his allergies as "sensitivies" or "intolerances" (which, they've made clear, are just inventions of contemporary, bourgeois hysterics), and are convinced that we should just try to feed him a surfeit of allergen-containing foods so he'll "build up a tolerance."

Sort of a digression. But, yes: systemic "softening" of language can have the really serious, unintended consequence of "softening" the perception of highly life-impacting -- and, in some cases, life-threatening -- conditions.

gypsyjr said...

This may be echoing some thoughts I've seen here, but while I don't define myself by my ADD, but it is a large part of who I am. I'm proud of who I am, and there's enough of a stigma attached to this disorder already without wrapping it in blanket words.

If someone wants to use People First Language in describing their disability, for whatever reason, then I'd consider it respectful to do the same, but it shouldn't be pushed as the norm.

Rob said...

(I'm turning off moderation so this can actually be an active discussion even when I'm out goofing around with Schuyler, as is my plan for today. Play nice, everyone.)

melissa said...

Rob well done. I have a learning disabilty and teach LD kids. I really thing that people first is more a PC issue than anything else. I know for a fact that I am as strong as I am becuase I struggled so hard in school. I also know that I have learned to be flexible and have a wicked and slightly twisted sense of humor beacause of the stuipid mistakes I make almost daily. I have given up trying to explain myself to people; I just let them think that I am a ditz. Once I tell new people about my LD it changes how they talk to me. You can see them get uncomfortable.It doesn't matter if I say I am a woman with a learning disabiltiy or I say I'm LD. My own husband didn't believe me at first. After I called him lost in our neighborhood a few times, he gets it. I think of it as having crossed wires in my brain. I am fortunate that I have the option of disclosure or not. I have found that adults with disabilites tend to be more direct about there concerns/issues etc and have a sense of humor about it. I tell my students form the the beginning that they will have to work harder than most of the students in their class and this isn't going to change. Warm fuzzies and heart felt stories won't change anything. That's not to say that I'm not the first to cheer, shout etc. when they succeed. We get right back to work after, though.

Rob said...

I get what you're saying, but at the same time, if people want themselves or their children to be seen as people before they're seen as disabled people, I don't see any harm in it [...] It's just a matter of personal choice.

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If someone wants to use People First Language in describing their disability, for whatever reason, then I'd consider it respectful to do the same, but it shouldn't be pushed as the norm.

----

And that's my point. It should be a choice, and if I thought it was being presented that way, then I wouldn't have written about it. Everyone has their own way of dealing with the many issues that come with disability, and if I want the freedom to raise my daughter the way I think is best, then I have to respect the choices other people make.

My problem with People First Language is that it's not being presented as a choice. It has been put forward as a monolithic philosophy, and as Amanda pointed out, it has become an industry standard. If you want to work in the field of disabilities, then you are expected to embrace People First Language.

Why not both? Why does it seem that each side needs to prove the invalidity of the other side? Why can't we just use the language that is more appropriate, accurate and helpful in whatever the situation is?

That's an excellent question. Sadly, though, as long as advocates for People First Language believe that people like me are being hurtful to disability rights, and as long as I believe that People First is misguided at best and actually counterproductive at times, I can't see how a compromise is possible. A good first step might be to stop behaving as if People First Language originated from a burning bush.

Then you can call your child "differently abled" if you like, and I can feel free to express the opinion that it sounds like you mean your kid has superpowers. ("He can fly!") And we can both feel "right" and can just agree to stop trying to write the Owner's Manual for every kid, whether they are "broken" or "differently fabulous".

therextras said...

To each his own.

sherry said...

Hi Rob,

Met you at a book signing in SA...drop by your blog from time to time.

I liked this post and wanted to comment. I didn't know anything about this before I read your post. Sorry if some of it is a repeat of what has already been said. My daughter is nine and severely delayed. She can’t write her own name but she functions very well physically (save for the drool and cool scarf she wears all the time).

Here’s the thing: People who meet her and are a part of her life need to understand her limitations because every aspect of her life is affected by them. For me, it’s a matter of being practical and letting people know upfront. Words are words. Of course I know my daughter is a person first (DUH!), but that is not what people need to know in order to care for her and understand her needs, or to love her for who she is.

Heroes are heroes because they face adversity and everything my daughter does, or tries to do, is filtered through the screen of her disability, which has killed off parts of her brain and made this world a very confusing place for her. In many ways, her disability has defined her and she is who she is because she fights back, because she overcomes it. She has not let her disability defeat her, but it makes her work harder and it makes her progress slower and we celebrate the progress no matter how small. The fact that she chokes on her food and paces the floor and says things over and over that don’t make any sense and drools like a faucet is not normal when you’re nine years old. But of course THAT is what people are going to notice first about my daughter, that is what is going to define her in their minds, whether I like it or not. Doesn’t matter whether I say she has a disability or she’s disabled or she’s special or she’s cognitively delayed or… what the hell? They can see for themselves right off the bat. I’d rather encourage my daughter to fight through her limitations and proudly shout to the world that she is able to do what she can do despite the very controlling nature of her own “monster,” than tell her (or anyone for that matter) to shove it under a rug where she’ll just keep tripping over it. As long as we keep sharing our experiences with anyone who will listen (without having to worry about how we say it or that we’re putting the disability first!) hopefully the world will continue to become a more compassionate place.

As for negative terms: a hundred years ago, people didn’t talk about their experiences with “special needs” when the label “Mentally Retarded” was prevalent. In fact, back then you hid in shame and people came and carted your kid off to an institution. No one talked and no one understood. Most people were afraid of what they didn’t know and of course, fear breeds cruelty. For this reason, I can appreciate that we are trying to come up with new, fresh terms without the negative connotations, but People First seems to be going overboard. Aren’t we creating new negative connotations in the process of nitpicking over labels or wording? Do we really have to tiptoe around the details? Do we really have to worry about how we say our kids struggle or are/aren’t controlled by their disability?

At least we’re saying it.

Beating around the bush doesn’t change the real challenges these kids face everyday.

But on the bright side, because we aren’t afraid to speak out these kids are getting educations, special adaptive equipment, encouragement and support, even financial help. And above all, hope.

And all because we’re talking and letting people into our lives and our experiences so they can see, without us having to spell it out in society-appropriate words, that our children are still people and they deserve the best the world has to offer, despite their disabilities. I hope we don't make people afraid to speak because they may not say it the right way.

Wow, that was quite a rant. Nice to meet you (again), by the way

Sherry

renee altson (tesserae) said...

hi there. don't know if you remember me from old online journaling days (i went by "tesserae").

my daughter jordan has her own monster--there's no diagnosis for it. she's retarded and kind of autistic and has a 10 year old body but a 4 year old brain.

thanks for this post. you are absolutely right!

peace.

Karen Putz / DeafMom said...

I'm pretty much middle-of-the road when it comes to people first language. Many times, I will work it into an article but also use other terms, such as blind artist or hard of hearing kid.

I identify myself as a deaf mom, because being deaf is just as much a part of me as being a mom.

There are some terms that make me cringe-- retarded is one and broken is another. I just find it very hard to read the word "broken" on the blog here or the book. Maybe it's because I've grown to enjoy reading about the kid that is peeking out from underneath that word.

Kelly said...

Well, I feel little ignorant. I can't believe I've been a Special Needs Mom (or a Mom with a Special Needs child if you will) for over 5 years and I've never heard of the "People First" movement.

I agree with everything you've said. To try to soften the word epilepsy actually takes away from my daughter's determination and strength in fighting it. I fear placing a stigma on the words that best describe our children will only increase their many struggles later on in life.

Thank you for saying so perfectly thoughts that I share on the matter. Kudos for a brilliant post!

Corinn said...

A label is just a quick explanation of part of a person, I think. As I said to a friend once, "I found out I AM learning disabled today... and I started work on a new dress. I'm not sure which of those statements is the more important one."

The only thing that really bugs me about the language of all this is saying someone "suffers" from whatever. I find my autism to be really frustrating at times, but who's to judge that I'm SUFFERING because of it?

Jill said...

Thank you.

Thanks! said...

I never found your use of "broken" to be jarring. When I was diagnosed with ADD -- I am blessed that it did not hold me back academically, socially or career wise just messed with how I organize my life and stress levels-- I wish that I knew that there were people who could come out and say "wow that sucks." I felt broken. Knowing that there are synapses that misfire in my brain and will forever make parts of my life harder for me made me feel stuck. I was surprised to have those feelings because ADD had been so accepted and destigmatized, but the fact is, it's hard and I don't want people to just think it's normal, because then it gets shrugged off when it's actually a big deal that actually affects my life. I can see how someone with disabilities that are more disabling than mine would be frustrated by the use of "people first" language because of exactly the reasons you laid out. I see the other side also, and agree with everyone who stressed the importance of choice. I don't define myself by my ADD at all, but I sure don't want to be told that ADD is just a different way of processing the world. Thanks for your post; it validated a lot of my own reactions to ADD.

queencallipygos said...

Someone mentioned the attaching of labels onto things, and that reminded me of something in a college course I took once...(It was a course on human sexuality, but trust me, there is relevance.)

The idea that the professor said one day which stuck with me was that by coming up with fancy words for something, and using those labels, that kind of creates a whole category of otherness. If you don't have the label handy, you can point at Bob and just say, "oh, yeah, that's Bob, he just really likes cows, it's just his thing." But if you have the label, then you can point at Bob and say "Bob is a zoophile! Gasp!"

At first blush it seems like the People First movement is trying to do that -- at least that's what they think they're trying to do. But it looks to me like they are so obsessed with eliminating the labels that they have ended up being obsessed WITH the labels, and have gone all the way past that and back around the other side into being "label-happy." Just like Rob says, if this was an individual choice thing, that'd be one thing, but when this became A Movement, that's when it crossed into "These are the NEW labels to use."

Karen said...

I can't help being reminded of when my older daughter was born. She was taken to a Neonatal ICU at a teaching hospital an hour away. She had a mild infection w/ no lasting problems, so she was only there three days. But my sister worked at the hospital and when I was visiting the NICU my sister would get deeply offended because the pediatrician called all the babies "he" rather than bother to look at the pink or blue signs and use gender appropriate pronouns. It didn't bother me at all. All I cared about was that he was giving my daughter proper care. He could have called her he, she, it, or that thing in the bassinet as long as he was gentle to the baby and providing her with the proper medicine. After all, my daughter didn't even know that she was a girl, that there was a difference, etc. But my sister believed that if he didn't care enough about my daughter as an individual to learn her gender, he couldn't be providing her with what she needed to thrive. She felt that babies needed love and attention. I felt they needed love and attention and antibiotics, and that if you had to loose two of the three, it better not be the antibiotics. That story has nothing to do with the topic other than I found it silly that people feel pronouns are more important than medical care.

As to PFL, People First Language has a real problem. Because it should be Language first. No, I'm not trying to be a smart ass. The point of language is to get ideas from one brain to another. And the reason that good language matters is that it conveys the ideas accurately. It seems to me that PFL is trying to take an idea from one brain and change it to be more acceptable or more appealing before putting it in other brains. But language that does that changes an idea before spreading it is inaccurate, imprecise, and ultimately not useful. Not every idea is acceptable and appealing. So taking an unacceptable and unappealing idea and changing it before putting it in someone else's brain is not accuately expressing the idea.

I sometimes feel that someone is a dick and should be shot. And if you change that idea to say that I think someone is not nice and needs to be talked to, you're not expressing my feelings. I know a man who was born and raisin in Africa before moving to America. He's literally an African-American. But he's white. And I sometimes laugh as newscasters try to discuss the races of people from South Africa. They are not African-American if they live in Africa. The movement to make language regarding race more appealing made it less accuarate. Likewise, if you say that Schuyler is a girl who uses a communication device, you may not be expressing the idea that Schuyler can't talk. And as unpleasant as that idea is, it's the truth. Rephrasing it isn't going to make it less of a reality. I have found that the truth, delivered with care and respect, has much more value than the kindest lie.

Courtney said...

I apologize that my first comment to this site is so nitpicky, but Schuyler is very much verbal, as we hear from you when you speak so eloquently about her use of the BBOW and sign language and even some noises. She is non-vocal, which is a technical but I think important distinction. Schuyler communicates, and from what I've read, she communicates a lot and clearly.

I have loved reading your blog and book, and, as someone who supports and trains teachers of "broken children", I appreciated your thoughtful breakdown of people first language.

Rob said...

Huh, I don't see it that way. To me, "vocal" indicates she's capable of producing sound (via vocal chords), which she is, whereas "verbal" suggests language usage, which for Schuyler, not so much, at least not via the spoken word.

In any case, the technical term is actually "non-verbal", unless you employ People First Language. Then it's, I don't know, "differently audible" or whatever.

Terri said...

A few thoughts. First of all, disability is natural. My father talks about what it was like when he was a child and at least 2-3 kids in his school died every year of pneumonia because there were no antibiotics. And there were lots more people who limped, or were blind or had other obvious physical disabilities because everything was natural--there was not the technology or know-how to fix or accommodate anything. Age disabled people younger and they died younger--disability is quite natural. Medicine and accommodations are not--but they are useful.

I do not like the phrase broken, but I am a nurse and have seen so many variations on human, that I would never call anyone unbroken either--there just is no perfect specimen...

When I say that my daughter has Down syndrome the first thing that pops into people's minds are that she is heavy, placid, always happy and loving, and can't read, can't, can't, can't... People love the idea that because they have an aunt or a neighbor or worked with kids who are like her that they know her. I have had people tell me that she is always happy while she is screaming mad...

I have worked with an adult with Down syndrome whose medical team resisted evaluating him for clinical depression--even when he had all the symptoms--because of their belief in Down syndrome's inherent happiness. It took a suicide attempt to make them notice the person.

I have worked with teachers who, because they believe that people with Down syndrome can't learn don't teach them to read--when, in actuality, a good many folks with Down syndrome can read at more than an 8th grade level.

I know older folks with Down syndrome who went for years untreated for simple ailments because someone on their team knew there was a connection between Down syndrome and Alzheimer's. One guy actually had a thyroid problem, one guy was just deaf (yep, a hearing aide cured his Alzheimer's) and a third was just on a bad combination of meds... years of these people's lives were wasted.

The prejudice that people have about Down syndrome--what people believe my daughter can do, has to offer, experiences, needs, or should be allowed to participate in--is the most disabling part of her life (she has a mix of real symptoms of Down syndrome, but you don't know which she does or doesn't have unless you know her.)

A nice cumbersome verbage that throws some stumbling blocks in the mental path between my daughter's diagnosis and the easy conclusions that people want to draw about her builds in a little breathing room. Truth is, when you know one person with Down syndrome, what you really know is one person with Down syndrome.

Person first language introduces the possibility of individuality--Does that change the world? Yes, it certainly does.

It's a place to start.

Rob said...

I'm sorry, Terri, but I just don't see how People First even begins to address any of those issues. The subtle change in language just isn't balanced by the inherent damage it can do, in my opinion.

And that's fine, it's just my opinion, but when we start talking about establishing across-the-board standards and banning words and creating the illusion of solidarity where none exists, then it's not a choice anymore.

And I just can't get behind that. Pretending as if every attitude about disability should be the same is just as wrong as assuming that everyone with Down syndrome is exactly alike. A fallacy in the employ of good intentions is still false.

Language is a complicated tool. Trying to wield it like a hammer isn't a terribly effective way to use it.

Anonymous said...

Very interesting blog entry and discussion. I read it, coincidentally, right after being sternly (and loudly) reprimanded at a weekend social gathering for using the word "autistic" instead of the phrase "child with autism." I apologized, because I honestly didn't realize until then how sensitive the issue of this labeling had become.

It did make me wonder about something else, though. Are the many county ARCs throughout the U.S. shifting away from their historical naming conventions?

Then I thought, "Wow. What about the NAACP?"

Special Needs Mama said...

Great post, Rob, as always. You had me coming back to this one again and again to ponder. At the risk of hairsplitting, I also wonder if we aren't talking about a difference between diagnosis (which bespeaks a medical model) and identity, which as many commenters have demonstrated, is where the disability becomes part of our language of "I"--and a socio-cultural statement as well. My son was blind and nonverbal (words I always used to describe him as a person) but also had "special needs" (words that captured his diagnostic status for medical and educational purposes). I frankly hate the term "special needs" except in that it does provide that shorthand.

I hope we sometime soon come to the place where we can use more accurate phrases, those that honor our children but also help inform and instruct. In that regard, ultimately Evan had multiple disabilities, plain and simple.

Tracy said...

Terri said "First of all, disability is natural. My father talks about what it was like when he was a child and at least 2-3 kids in his school died every year of pneumonia because there were no antibiotics. And there were lots more people who limped, or were blind or had other obvious physical disabilities because everything was natural--there was not the technology or know-how to fix or accommodate anything. Age disabled people younger and they died younger--disability is quite natural. Medicine and accommodations are not--but they are useful."

We're clearly going to have to agree to disagree, Terri. There are a dozen definitions of the word "natural" and I feel you're cherry-picking one in particular to make your point here.

If disability were natural in the way you are arguing it, then the children in your father's anecdote would have been born with pneumonia - instead, it's actually a disease they contracted which proved fatal. I don't see how that's either a "disability" or "natural", nor relevant.

Nor do I agree that the definition of "natural" that you have picked is the same one that Kathie Snow has picked.

Simply put, if disability were truly natural, then it would be the majority condition.

queencallipygos said...

The point of language is to get ideas from one brain to another. And the reason that good language matters is that it conveys the ideas accurately. It seems to me that PFL is trying to take an idea from one brain and change it to be more acceptable or more appealing before putting it in other brains. But language that does that changes an idea before spreading it is inaccurate, imprecise, and ultimately not useful.

Yes. This.

Agg said...

This "People First Language" thing reminds me of Deaf culture issues and how the deafness is "not a disability" (I am deaf, but not Deaf and for me it certainly is a disability). It is all nice when they talk about the Deaf culture and sign language and how fantastic this language and the Deaf society is. But things are more serious when it comes to the movement against cochlear implants for deaf children. It is not only the matter of language.

By the way, I agree with Courtney here and I have wanted to write this since long: Rob, Schuyler seems to have no problems with _language_. She has problems with _speaking_ or, if you prefer not to use the word "problem" here, she can't speak (clearly). It is a great difference and I am not being PC here (here in Poland the PC movement is rather laughed at).

It seems that the term "non-verbal" is rather too wide, even if it is technically correct for anyone who doesn't speak with voice (what about the Deaf, signing only children, then? Are they nonverbal too?)

May I ask a question: is Schuyler able to use a computer keyboard, or are the keys too small for her hands, or something?

Elizabeth said...

I think you have a lot of interesting points, and if People First language ends up being used to play down someone's disabilities, then it's doing a disservice to everyone involved. The thing is though, I will never not chafe at hearing someone use the words "Down Syndrome kids" in my presence. I don't have a Down Syndrome sister. I have a sister who happens to have Down Syndrome, and it is not by any means the first words I would use to describe her. Her disability is a part of her, but not all of her, not the overriding description of who she is. I am certainly not trying to hide the fact that she has it, but I also don't feel that I owe anyone the knowledge, if that makes any sense.
Oddly, I don't mind "my mentally retarded sister" but "Down Syndrome kids"...just not right to me. Language is a tricky thing.
I think what it really comes down to is that there is a deep rooted idea that we should all be treated equally - and every bit of information you put out there about someone else, whether it's the color of their skin, their disability, if they are fat or thin, changes the worlds perception of them. It shouldn't, but it does. To be treated as an equal person, it sometimes seems as though you have to keep who you are from the world, for as long as possible. To put it right out there means you are giving someone the option to change their perception of your sister, your child, your friend, before they've ever even met them. And that's a scary thing. And maybe sometimes it seems like people shouldn't be given that chance, to make up their minds ahead of time based on nothing more than a label.

Anonymous said...

THANK YOU KAREN, for this...

"taking an unacceptable and unappealing idea and changing it before putting it in someone else's brain is not accuately expressing the idea.

I sometimes feel that someone is a dick and should be shot. And if you change that idea to say that I think someone is not nice and needs to be talked to, you're not expressing my feelings."

PERFECT!

Ashleas said...

As much as I struggle trying not to offended people and also at the same time not come off as being a prude about language.. I don't care if people say "She's a stutterer" or "She has a stutter".

I just want companies to hire me without freaking out that OMG, I can't talk to people. A bit fat FU to them.

Megan Lynae said...

Throughout college I received a small scholarship from a local organization called Crippled Children and Adults. I was grateful for the money, and amused at their refusal to change the name in the face of a great deal of People First type pressure. Mostly, I think that what was important there was that a non-PC organization was able to positively impact my life. And that's what it should be about. Positive impact, rather than positive, and sometimes inaccurate, wording.

Navi said...

didn't read the whole thing, but it appears much better put than my "is autistic and has autism means the same thing in the English language, thankyouverymuch"

Jennifer said...

Rob, this is a great post and puts into words for me why I feel so weirded out by the entire idea.

Anonymous said...

Amen

Katie said...

If disability were natural in the way you are arguing it, then the children in your father's anecdote would have been born with pneumonia - instead, it's actually a disease they contracted which proved fatal. I don't see how that's either a "disability" or "natural", nor relevant.

But plenty of people are born with plenty of disabilities. I honestly don't really understand an argument for how disability isn't natural, and would honestly love an explanation.

I'm not saying that the fact that it's natural means we shouldn't make efforts to change it, nor am I saying treatments or other methods of accommodating disabilities are "unnatural." (I think the entire distinction is pretty stupid to begin with - what exactly doesn't exist in nature in some form? Unicorns?) But how can we say that conditions that can literally be written into someone's genetics are unnatural?

It also seems . . . stigmatizing in the extreme to say that disabled people are "unnatural." "God, you're such a freak show; your body isn't even natural." What exactly is gained by refusing to admit disability is natural?

L. said...

Rob, this was a really well-written post. I agree with Laura--your writing's always been good, but post-book it's shining.

Having no personal connection to the special needs community, I had no idea PFL existed. So I appreciated the introduction to the topic as well as your refutation of PFL. You drew out and explained something I've always felt about much of the PC language out there, and I greatly appreciate that. Also, though I've read many of your posts/comments before on the topic, I feel like I finally have a more solid emotional understanding of your use of "broken."

Thanks for making me think today.

Hetha said...

Abso-fuckin'-lutely Rob.

Tiffany said...

So if I am a woman I should be referring to myself as a person who is female? People first, you know.

Am I also not allowed to call myself defective anymore? (I have a genetic disease). The only way I cope when I get frustrated with my "different abilities" is to laugh about it. Maybe I should stop, if it's making all those healthy people uncomfortable.

Tracy said...

But plenty of people are born with plenty of disabilities. I honestly don't really understand an argument for how disability isn't natural, and would honestly love an explanation.

My explanation is the same as earlier with Terri's comment: there are a dozen definitions of the word natural, and Kathie Snow picks one for her argument (#4), and I pick one for mine (#3 or #7 or #8), and you (Katie) pick one for yours (maybe #1) and Terri picks one for hers -- and it doesn't make any one of us absolutely, unfailingly, normatively correct.

"Natural" is a very loaded word the way Kathie Snow uses it for her new movement, and I'm sure she was fully aware of that when she picked it for her slogan. But the simple fact is that "occurring in nature" is not the same concept as "expected and usual and ordinary." That we have different perspectives right here on Rob's comment thread as to whether "disability is natural" is clear evidence that the phrase creates far more problems than it does solutions.

It also seems . . . stigmatizing in the extreme to say that disabled people are "unnatural." "God, you're such a freak show; your body isn't even natural." What exactly is gained by refusing to admit disability is natural?

I agree that the word "unnatural" is stigmatizing. Please note that I haven't used it here.

I don't agree that just because I don't see eye to eye with Kathie Snow on how "natural" a disability might be, therefore means that I believe a person with a disability is "unnatural." I hope I've just made that distinction incredibly clear going forward -- because otherwise that implication is pretty much flame-bait, as is the hypothetical "God, you're a freak" comment.

Putting offensive words in other people's mouths isn't a great way to be taken seriously.

Helen-Louise said...

I agree with many of the comments here, especially andrea: Why does it seem that each side needs to prove the invalidity of the other side? Why can't we just use the language that is more appropriate, accurate and helpful in whatever the situation is?

Also, a much better term than "nondisabled" is "temporarily able"/"temporarily able-bodied". It emphasises how a person without disabilities is in that state purely by good fortune, and is true to the fact that many of us will develop medical conditions or loss of function as we get older.

Anonymous said...

Gee, and I thought "non-disabled" was foolish beyond words. But "temporarily able-bodied"? You have got to be kidding me. Casting the typically-abled in terms of any POTENTIAL disability. Why, that's downright re- uh diculous.

So now it's not enough to differentiate, now we have to have labels that remind the typical at every turn that we're MERELY LUCKY and it will be taken away from us at any moment and then HAH! LET'S JUST SEE HOW YOU LIKE THEM APPLES!

Nice. Why not just refer to everyone as "non-dead" and be done with it? Because after all, life is temporal and we could die at any moment and then HAH! LET'S JUST SEE HOW YOU LIKE THEM APPLES!

George Orwell would be either amused or completely horrified. This just smacks of doubleplusgoodspeak.

Sue

Cheryl said...

Love your post. Agree with you completely. I've written a blog post about this too. "Rethinking People First Language." I don't like PFL either...

sarah w said...

There is definitely a fine line with this language stuff. 'Retarded' is pretty much universally unacceptable, but what about the other end of the spectrum - kids in the 'gifted and talented' programs (they probably don't have those anymore, huh? Probably now the 'accelerated learning program' or something).

As everyone's comments reflect, insult and intent are in the eyes of the beholder (or the beholder's parents, as the case may be).

Sarah w said...

P.S. - I forgot that I wanted to comment on Schuyler's potential glasses. I'm sure they'll be adorable! (Wait - I'm sure she's too old for adorable. How about sophisticated? Like her dad, right? Very fancy pants. lol) Whatever the word, she is beautiful, and I'm sure they will suit her fabulously.

Do you know if the eyesight problem is a result of her PMG? Just curious.

Rob said...

Nope, just bad eyeball genes. Julie and I are both pretty blind.

kp said...

I disagree. With everything you said. People first language is not designed to lessen the blow of the disability or to make the disability to seem any less than what it is; people first language simply allows a person to be a PERSON and not a diagnosis or a label. Saying a person uses a wheelchair vs. he is wheelchair bound allows that person to show he or she is not "confined" by the restraints of the wheelchair, but only by his or her inhibitions.

Knowing many people who use wheelchairs, I have engaged in plenty of coversations about the "confinement" of wheelchairs and guess what: none of the people with whom I spoke felt the wheelchair "confined" them to anything other than closed-minded peoples' perceptions of what persons with disabilities should or shouldn't feel. So thanks Rob for the insight, but I think I'll stick to my guns on this one and continue to fully support people first language.

Rob said...

Well, of course that's fine with me. As long as you and your fellow People First advocates don't continue to portray PF as a universally accepted concept, which it very clearly is not.

There's a reality here, though, and that reality is that disabilities are real. You can talk about "confinement" in all the uplifting terms you want, but in my experience with people with disabilities, the ones I've spoken to aren't interested in flowery sentiments and "yes you can, little trouper!" sentimentality. I have no idea how many people with disabilities you truly have experience with. Trust me when I say that I meet a lot of them. A lot.

People First sugarcoats disability, and in doing so makes someone feel better. I'm not sure it's the person you think it is, and I'm not sure that in talking pretty about hard things, you're changing the world the way you think you are.

But you choose the fight that you think is worth fighting. I'm sure that someone will feel better for it. Hopefully someone beside yourself.

Anonymous said...

I totally understand what you're saying. I kind of think that using People First Language takes away some of the generalizations that people have about certain disabilities. By saying, "That child is Autistic," or, "he is handicapped," I think people hear that and start to put these people in categories. Oh he's Autistic, he must be like rain man, etc. He is handicapped, He must have a low IQ. I like People First Language and use it every day. I think even more since my brother was paralyzed 2 years ago. But thanks, because I do understand what you're saying and never thought of it that way!

Anonymous said...

I totally understand what you're saying. I kind of think that using People First Language takes away some of the generalizations that people have about certain disabilities. By saying, "That child is Autistic," or, "he is handicapped," I think people hear that and start to put these people in categories. Oh he's Autistic, he must be like rain man, etc. He is handicapped, He must have a low IQ. I like People First Language and use it every day. I think even more since my brother was paralyzed 2 years ago. But thanks, because I do understand what you're saying and never thought of it that way!

Anonymous said...

I am a person with Down syndrome. I am not a Downs girl, or a Downs kid, or a retard, or a dummy. I like people first language because it focuses on how I am like other people first, and it focuses on the parts of me that are important. Having Down syndrome is only one part of my identity. And the friends I have who use wheelchairs (and I know a lot, too--I go to a specialized school) don't see them as cages or places where they are confined. My friends who use wheelchairs, at least the ones I've talked to, see them as freedom machines! When I was little, I used a walker to get around, and it was certainly not a confinement for me! It helped me get around so much better than I could without it.

Now, I would not go so far as to say I am "differently abled" or anything like that. Some things are harder for me than other people. I do not have "special abilities," either. I can't fly, or walk through walls, or read people's minds. But I am not a "disabled person." I am a person. And I have Down syndrome.

And as you can see, I can read and write. When people talk about a Downs kid, they're not imagining me!

Anonymous said...

When my young son notices how different from other kids he is, I don't tell him he's special, I just tell him he sees the world differently. He accepts that better than being told he's special. When someone told him that, he wanted to know what made him special. I think all children are special regardless of their abilities. The way the word is being used in playgrounds today it has become an insult because people are starting to only use it for children with disabilities. Stop beating around the bush when describing disabilities. They certainly aren't sugar coated when you have to deal with them on a day to day basis.

Terry D said...

I am not so close to this whole conversation having only heard of people first language in the last few weeks. I can see that some people are quite passionate about the subject. I don’t know who is right or who is wrong, if there is a right and wrong, but people first language has certainly opened my eyes. The fact of the matter is that because of the terms used in the past I’ve automatically judged and excluded people without first asking what limitations their disability created. For instance, I’ve an acquaintance that I’ve always known to be ‘confined’ to a wheel chair. The funny thing is I’ve never invited him to take part in my groups activities. Recently I have come to the conclusion that I need to meet this person all over again – I think now I may have missed something. This has also brought to my attention that I am disabled – I wear glasses and without them I dare not leave the house. The knowledge of people first language has me thinking differently for sure and so I think people first language is for people like me, not parents who know and care or those who have disabilities.
Terry D

Maya said...

I realize I am coming into this discussion WAY late, so I might not get a response to this. That said, can someone clarify the People First movement to me? Does it actually mean removing the name of the disability? For example: I thought PF meant saying "My husband has diabetes" rather than "My husband is a diabetic." Does PF actually mean I "should" say "My husband takes insulin" instead?

If it's the former, I don't see how saying "has diabetes" as compared to "is a diabetic" softens the disability at all. It's still the same word, just with a different placement. If it's the latter, I definitely see how that softens the disability and I think it does a potential disservice (particularly with children who have life-threatening allergies, as a few others have said).

I am a person with a disability called Marfan syndrome. One of my sons has it as well; the other son is autistic. My mom was here this week visiting and said I shouldn't be referring to my son's autism because he might grow up thinking he's different and that there is something wrong with him. Well, he IS different. His brain operates differently than most people's. He is probably going to figure that out. When he's old enough to care (if he ever cares), he can call it whatever he wants and I'll honor that, but for now I'll call a spade a spade. Autistic or a person with autism, either is fine by me, but I'm not going to make up some other, gentler term.

That said, here comes what I suppose is a bit of a double standard. Diane Sawyer recently did a story on Ann Reinking and her documentary about children with Marfan: In My Hands. The narrator in the Sawyer piece referred to "Marfan children." I literally cringed. My whole-body tightened up and I can't tell you what else they said in the segment because I was so upset. Maybe it's silly that it hit a nerve for me, but it did. Kids with Marfan? They look different. I got called a Martian more than once growing up. "Marfan children" felt, to me, like these teens were being called aliens or some subset of the human race. I really, really wished ABC World News Tonight had used "children with Marfan" instead, especially knowing the teens from the documentary as well as I do.

But, that said, I use the term "Marf" all the time. I write about how beautiful I think "Marf babies" are and that I appreciate in many ways being a Marf, but sometimes it sucks. Heck, my online identify is "MarfMom." Many of us in the "Marfamily" use the term, but I guess it's a kind of "earn your stripes" sort of thing. You have a loved one with Marfan? You have Marfan? Call it whatever you want (and certainly some people loathe the term Marf and I respect that and they respect my POV): you've earned that. But someone from the outside looking in? I feel like it's presumptuous deciding what we (people with a disability, not just people with Marfan syndrome) should be called.

Why not just ask? Personally, I think PF (as I understand its definition, which may be wrong) is a good a default as any and that's what I'll use if I'm going into a situation where I don't know someone's preference or can't ask.

Virginia Barrett said...

I apologize in advance for the emotional rant I might go into. Here is the thing I struggle with about person first language as an "issue". I want my daughter to believe that she is Katie not Down syndrome. I want my daughter to be seen by others as Katie and not Down syndrome. I also want her to get married one day and have the ability to do whatever it is she truly wants to do in this life. Two out of three of those things I have some power in but the second thing I mentioned I am powerless over. I can educate those who are willing. I can ask they refer to my daughter as a child with Down syndrome but I can't make them see her that way. Language is important to me and can often me intense for me. Word are my passion and I am sensitive to them in a way that others aren't. In the world I live in that is my problem not theirs. I use person first language not because my child has power over her diagnosis and not because it is PC but because when I look at my child that is what I see, Katie first. That being said, that isn't always the case. I admit that when I see a stranger in a wheelchair I see the wheelchair first. Not because I don't value the person or believe they are "less than" but because it is not the "norm" and I don't know the person enough yet to see them for who they are. It took me awhile to see Katie for who she is. As an infant her personality was not yet visible to me but her features were. I think it is a personal preference and while I will always advocate for people with disabilities, i will do it because I had a child with a disability. I most likely would not be contemplating any of this had I been dealt a different hand. I have to remind myself that those that aren't affected by this issue personally aren't going to be as sensitive to it and that is OKAY and perfectly natural. I have to be careful not to become self righteous and remember how I got here and why.

Aspie Girl said...

I am autistic, and find that most people in the autistic community prefer to say "I am autistic," rather than "I am a person with autism."
The well-meaning people who describe us as "persons with autism" consistently turn out to be people who are NOT themselves autistic.

Aspie Girl said...

I am autistic, and find that most people in the autistic community prefer to say "I am autistic," rather than "I am a person with autism."
The well-meaning people who describe us as "persons with autism" consistently turn out to be people who are NOT themselves autistic.