First
I recently had a conversation with someone on Twitter about People First Language.
Let me back up a second. If you don’t know (and if you’re reading a site specifically about disability advocacy, you’re probably familiar with the concept, so I’ll keep it short), People First Language is a philosophy by which, when writing or discussing issues of disability, the person literally comes first. I am not a curmudgeon, for example, but rather I am a person with curmudgeonly tendencies. (Which is true enough.) Adherents to People First Language believe that identifying a person by their diagnosis or placing that person at the mercy of their condition (“confined to a wheelchair” instead of “uses a wheelchair”, for example) can result in fear or pity and will become an impediment to real and meaningful inclusion. People First Language confers dignity on a person that other language choices do not by minimizing the impact of the disability on the person’s image and, perhaps more important, their self-image. Or so the thinking goes.
Anyway, back to my conversation the other day. The person who tweeted about People First Language expressed surprise and disappointment that there are still people who do not use it, fueled by the belief that People First now represents a universal standard that all writers and advocates do (or at least should) adhere to. This is in line with the goals of People First, incidentally. Which is a problem for me.
I do not care for People First Language. I especially don’t agree that it should be a universal standard for professionals. I do not like it, Sam I Am.
I went back to refer to a piece I’d written a while back, only to discover that it was four years old. A lot has changed in that time, including the general reaction in the disability community to People First Language, so I thought it might be time to talk about it again.
The primary thing that has changed in that time, I think, is a growing discomfort among disabled self-advocates. I’m not actually qualified to go too deeply into this point, and I won’t insult anyone from my admitted place of privilege by trying to speak too much to this perspective. Suffice it to say that there are many who feel that their disabilities are a vital part of what makes them who they are, and minimizing those differences shames them, encouraging the world to consider them as less somehow. I can’t speak directly to that perspective, but it strikes me as extremely sound logic.
When I went back and revisited the People First site, two things jumped out at me. The first is obvious: Kathie Snow, the person who has developed the concept and has been the driving force behind advocating for its acceptance as a universal standard, does not herself appear to have a disability. The second thing that caught my eye is that People First isn’t just a concept to her. It’s a business, and not a small one, either. To me, that feels… I don’t know. Awkward, perhaps.
Regardless, I can see the appeal of People First. And I want to make something clear. I have absolutely no personal issue with anyone for whom People First Language feels appropriate and respectful. I am a firm believer that words matter, and that everyone has the right, and even the duty, to find the means of expression that work best for themselves and for the people whom they love and support. I would never try to tell someone that what works for them is incorrect for anyone else. (In that respect, incidentally, I think I’m extending a courtesy that proponents of People First Language, in their quest for universal acceptance and implementation, most decidedly do NOT extend in return.)
So I get it. As I said four years ago, I would love for my daughter Schuyler to live in a world without judgment and pain, one in which her differences were celebrated and where no one caused her to feel like there was something wrong with her.
But there’s a harsh truth at work. There is something wrong with her. There are pieces of her brain that don’t quite successfully process the world around her in all its complexities, parts that wreck her speech and occasionally give her seizures, which can prove debilitating or even fatal to other kids whose brains are similarly but more significantly affected. This brain of hers, whether or not it kills her one day or simply makes the world a hard place for her for the rest of her days, well, this brain is broken. That’s rough, certainly for the people who love her to process, but more importantly, it’s no picnic for her.
Schuyler knows this. She doesn’t use the term “broken”, but she will tell you that her brain has a tiny monster living in it, and that it keeps her from talking. And when pushed, she’ll admit that this pisses her off. She stays unblinkingly positive about it most of the time, but her anger and her frustration at her little monster is heartbreaking to those of us who care for her. It might just be the most challenging part of being her father, knowing that she’s aware of the problem and would do anything to solve it.
But here’s the thing. It’s not a problem than can be fixed. Her monster can be negotiated with, outsmarted, minimized, even occasionally tamed, but it’s never going away. It’s not going to be healed by science or clean living or Jesus or vitamins.
Most of all, it’s not going to be eradicated by gentler language. Schuyler doesn’t need the world to speak more nicely about her monster. She needs us to speak more honestly about it.
And that’s hard. I get that. It’s hard because we love her, and talking openly about what’s wrong with her feels like we’re ignoring what’s right about her. And there is a very great deal that is right about Schuyler. She’s the best person I know, hands down. I get why it’s tempting to use language that takes the power away from her disability. But it doesn’t. People First Language doesn’t blunt the monster’s fangs.
Worst of all, at least in my eyes, People First Language seems to want adherents to take ownership over their disabilities. Schuyler isn’t epileptic, People First tells her. She is a person who has epilepsy. She owns it. And that’s great, I suppose, particularly for adults who can process that idea.
But is that right for a child? If we ask Schuyler to own her disability, will she seek to take responsibility for it as well? Isn’t that how young minds work? If your parents divorced when you were a child, didn’t you ever think it happened because of you? Children are natural narcissists, and the world revolves around them. I don’t like the idea of Schuyler as the victim of Fate or bad luck or a genetic misfire, but it would kill me if she somehow believed that she’d brought her disability on herself, as if she deserved it.
Ultimately, one day Schuyler’s disability will be hers and hers alone to face. As a parent, that’s hard to admit. But there it is.
I’ve said it before, but I have always maintained that the only two things I can ever guarantee to provide for Schuyler are love and the truth. People First Language feels like love, but I don’t think it actually is. And I know it’s not the truth. It’s a version of the truth, perhaps, but one that exists, in my opinion, mostly to make a hard situation feel easier. And honestly, I’m not sure it makes it feel much easier for Schuyler. It probably does so for the rest of us, the ones who love her, but we’re not really the point.
If People First Language is putting us first rather than Schuyler, then I truly believe it’s getting it wrong. I’m sorry, but it is.
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I will use “autistic” as a short-hand when describing my youngest when he completely ignores people and “non-verbal” even though he can talk but doesn’t to those outside of his “circle”. Easier and people know “disabled and won’t reply to me”. The most important information I can give them should something go wrong. Eldest is another issue b/c IMO it applies but it doesn’t. So we’ll stick with #2.
But, I don’t like people that use the disability to talk about themselves. We all have names, it is who we are. I firmly believe that my first OT coordinator was correct “a dx is only to get services”. Period. No need for services, no need for a dx, no “way of being”.
Should we hide the dx, our difficuties, our disabilities. Never. Should we be embarrassed about them, pretend they don’t exist, claim they are “a way of being” or admit they are “monsters”. I’m fully for the “monster” part.
But there is a time and place for both. Sitting watching tv, we are “name”. Sitting in an IEP meeting the diagnosis and it’s issues are the most important.
So, IMO there is a time and place for both.
Rob, I couldn’t agree with you more. My child is not responsible for the damage to her brain. That damage makes her life both different and more difficult than if it didn’t exist. The idea of people making money off of how the world should refer to her and her brain damage is nauseating.
Thanks Rob. Very well written and insightful, as usual.
I like the way you’re thinking about this. Ultimately, I think in this case and with anything else that describes us, we should be the person who gets to decide what people call us.
I do appreciate the People First approach that we are not defined by our disabilities. But there is power in the reverse, too: the Deaf community refers to itself that way (label first, capital-D) as a way of defining that they are a community, and that other people may think of them as people with disabilities but that’s not how they define themselves.
Marisa (associate member-by-parenthood to the Deaf community)
I’ve known more than a few who made a business out of a cause.
Very thought-provoking. Thank you. I can see both sides–and agree with commenter #1 that a happy medium makes sense. But I think this piece addresses two separate perspectives: how others view someone with a disability, and how the person with a disability views/describes his/herself. And these can be very different.
People First seems most effective–and appropriate–in the former situation. As a journalist who has a disability (cerebral palsy), I bristle every time I see an article using the phrase “confined to a wheelchair” or “suffers from a disability.” The latter in particular galls me–nobody but the person being described has the right to describe how their disability treats them. And to many people, these phrases are demeaning and diminishing–and they’re descriptions being forced upon them, without their consent. It makes the idea of disability somehow inflexible and immutable–when those “in the know” realize that how a disability makes someone feel fluctuates from day to day, week to week, month to month, etc. That’s the problem I feel like People First wants to eradicate, the rigid approach to describing disability.
But I think the key to this: Schuyler (and anyone else with a disability) should control their own narrative, using whatever language makes them the most comfortable. Whether that’s People First or something else, it’s their right to figure out what language is best for them.
However, other people aren’t psychic; most aren’t going to know what someone prefers. So when other people are describing someone with a disability, I feel like erring on the side of respect and nonjudgment makes the most sense, simply because we might not be aware of what the other person prefers.
“Schuyler doesn’t need the world to speak more nicely about her monster. She needs us to speak more honestly about it.”
I like this, and I think that’s the key of this piece. However, I think you can be honest about a disability–and nice about it.
Also, and a note: Growing up, I generally tended to embrace my disability as “just something I was born with,” even as I owned it and didn’t let it stop me. (Even though, yes, it frustrated me and sometimes made me angry.) I credit this to how my parents raised me. And Rob, I’d bet you are raising Schuyer in a similar fashion; teaching her not to blame herself does sink in more than you think.
But what if there is no adjective? My kid is Down syndrome? A Down syndrome girl? A Down baby? A Down? An adjective describes the noun. Even when it’s not there literally, it is understood to be there.
All of the above examples break my heart every single time.
I believe we should all have the right to choose how we describe our disabilities. Some of the New Speak phraseology is just too twee for my liking. I am not “differently abled.” I am disabled. I have a spinal injury and I walk with a cane. My back hurts. My leg REALLY hurts and I am often grouchy as a result.
On the bright side, my brain works admirably. Of course someone has found a way to cash in on the People First bandwagon. That’s what people do: They find a cause or they invent one and then they try and make money from it.
I’ve always struggled with this. I think my perspective is that I will always use language that benefits her most at the time.
She only vaguely perceives that she’s different than other kids her age right now. In fact, she’s more aware of her eyesight (and glasses) than of her stroke. So the vast majority of what I’m saying about her disability isn’t to her directly but to others. So when I talk to others about her, its with her privacy and respect first. So if I choose to share info with someone about her stroke (outright curiousity from someone we will never see again does not mean I will share!), it will be in People First language. “She had a stroke”, “She has a speech delay”. etc etc. I want people to see what she can do and how well she’s doing. I think it helps her right now because they will see how low-key we are about this and maybe be low-key themselves. Maybe she won’t seem too different to them at this point and she’ll be able to get the most out of her social interaction with them. I certainly am aware of educating ppl about disabilities and advocating for them, but when I’m with her, the most important in my mind is helping her, not society at large.
I know the day will come when she recognizes more what happened to her and how she is different than others. I know this will change how we describe things verbally to her and to others. Maybe she will want to acknowledge these things head one or maybe will will use pf language. I have no idea.
The thing we have in common is that we will do what is in the best interest of our kids, even if it is completely different.
Rob,
I certainly would not totally disagree with you. I certainly wouldn’t want any child to feel responsible for their disability, however I am not sure that by using people first language that that is what we are doing. My son is now a grown man who just happens to have cerebral palsy. First of all if I am talking about my son in any way in which his disability in not relevant, I am not going to mention it, just as, if it’s not relevant I won’t mention how he wears his hair in dreads (yuck).
I am also a special education teacher. I think it may be even more important in that venue to use people first language. When I am talking about a child in my class, I definitely want all the other professionals in my school to remember that my student is a child with all the rights that entails. I once heard that a child with a g-tube was called “the tube boy”. I think not using people first language lends itself to that type of nastiness.
Of course this is my opinion, from my experiences, for what it is worth.
Lisa
The point that many self advocates are making is that you shouldn’t HAVE to dance around the word just to see someone as “fully human”. I am a person whether you say I’m autistic or have autism. Autism does not make me less human, just as a wheelchair doesn’t make someone with cerebral palsy or a spinal injury less human. If someone breaks their arm, that doesn’t take away their humanity, does it? So why would a permanent disability?
If anyone thinks that the best way to get the world to accept disabled people is to use awkward words to trick people into ignoring disabilities, we have a BIG PROBLEM.