autism · Down syndrome

She is Downs.

My daughter has Down syndrome. She has an extra chromosome in every single cell in her body. From the hair on her head, to her fingernails, to her heart. This “person first” movement that requires its subscribers to take offense when someone calls their kid a “Down’s child” has gone too far. Listen, I get us wanting the word “retard” pulled from the common vernacular. There’s a stigma that goes along with that word. The only stigma to using “Down’s” instead of person first is the one that we have ascribed to it. Historically, saying “Down’s” has not been used as a derogatory term the way “retarded” has.
And I honestly don’t get it. Feel free to correct me on this. I’ve heard it said that the reason why we use person-first language is that we want the person with the syndrome to be seen as a person and not their diagnosis. That’s all well and good, but I’m pretty sure changing the word order in a sentence is not going to make people see Abby before they see her as having Down syndrome.

And I don’t think that’s wrong. I don’t mind people seeing Abby as a “Down’s Child” because she is. Down syndrome is GREAT. So what if that’s the first thing they notice? What I’ve seen is that they notice that, then they see HER. And Abby is just fantastic. We go around saying, “Down syndrome is nothing to be sad about! Down syndrome is great! Don’t you dare say my daughter IS Down’s!” Um, why? Isn’t our message that Down syndrome is great?

To me, it’s a lot like when you meet ANYONE for the first time. I have a friend from China. The first thing I noticed about her was that she was Chinese. But I don’t say she’s “a friend WITH Chinese.” She IS Chinese.

I’ve watched how the use of person-first language has evolved in the autism community. An interesting thing is happening. Adults with autism are describing themselves as “Auties,” “Autists” and “Aspies.” The whole use of person-first gets thrown out the window because these people are PROUD of their autism.  This is what I want for Abby. I want her to be proud of the person she is. Proud of her Down syndrome and the unique gifts it gives her. Just as I want Casey to be proud of the autism and the wonderful things it enables Casey to do.

Casey is autistic. Abby is Down’s.

I couldn’t care less how people call them. I just want them to treat them well. That’s all that matters.

EDITED TO ADD: Other critisms of the person-first language are (stolen entirely from Wickipedia):

In the case of people-first language, preconceptions judged to be negative allegedly arise from placing the name of the condition before the term “person” or “people”. Proponents of people-first language argue that this places an undue focus on the condition which distracts from the humanity of the members of the community of people with the condition.

Critics have objected that people-first language is awkward, repetitive and makes for tiresome writing and reading. C. Edwin Vaughan, a sociologist and longtime activist for the blind, argues that since “in common usage positive pronouns usually precede nouns”, “the awkwardness of the preferred language focuses on the disability in a new and potentially negative way”. Thus, according to Vaughan, it only serves to “focus on disability in an ungainly new way” and “calls attention to a person as having some type of ‘marred identity” in terms of Erving Goffman‘s theory of identity.[3]

The US National Federation of the Blind in 1993 adopted a resolution condemning politically correct language. The resolution dismissed the notion that “the word ‘person’ must invariably precede the word ‘blind’ to emphasize the fact that a blind person is first and foremost a person” as “totally unacceptable and pernicious” and resulting in the exact opposite of its purported aim, since “it is overly defensive, implies shame instead of true equality, and portrays the blind as touchy and belligerent”.[4][5]

In deaf culture, person first language has long been rejected. Instead, Deaf culture uses Deaf-first language since being culturally deaf is a source of positive identity and pride [6]. Correct terms to use for this group would be “deaf person” or “hard of hearing person”[7].The phrase “hearing impaired” is not acceptable to most deaf or hard of hearing people[8].

The autism rights movement also rejects person-first language, on the grounds that saying “person with autism” suggests that autism can be separated from the person.[9]

31 thoughts on “She is Downs.

  1. I've questioned this, too, and the answer I've gotten is that "self-advocates want to be referred to as people with DS, not "Down's people" or whatever else.Now, why they want this is anyone's guess. Do they want it because someone told them it is important, or better, or that DS is something to distance themselves from? I don't know.The Down vs. Down's thing is the one that really gets my goat. Everyone talks about the link between DS and Alzheimer'S and no one gives a second thought that it "should" be Alzheimer disease.

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  2. In the world of humans we tend to see people, make a decision, and react to them at the same time. Most of the time stupidity takes over our reaction and we say or do something stupid. For example, Yesterday at Seattle Children's hospital I saw a young man in a wheelchair, face broken, limbs out of control, and an inability to speak. My first reaction was WOW! That must have been a bad car accident. And then I stopped. I have no idea what happened. My stupidity took over and I assumed I knew what had happened. He was able to communicate to his caregiver well enough for her to turn and comfort him. That's when I saw the whole person, not just the wheelchair, crooked nose and flailing arms. But the child that belonged to someone.There are many different diagnosis out there, some are visible and some are not. Each person has a unique gift. Abby and Casey are Downs and Autistic and have gifts that touch peoples lives, gives them hope and many times a laugh now and then. Embracing what you have been given is the key to happiness. Waiting for the rest of the world to stop being stupid is their problem.

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  3. I don't like my child being called a Downs…But I also don't jump down their throats when some one says it because no, it isn't the end of the world when it happens. You can want to push the people first thing without being a complete asshole…And I actually think it is unfair to say people who DO like their child to be spoken of as people first are taking this whole thing to far. Why don't I like Russell being called a Downs? Because I find the same people who call him a Downs also say things like "I have worked with one of THOSE"…He instantly becomes a "They" or a "Those"…I find when people call him a Downs they think my son is just like every other person with Down syndrome that they have ever met…Same personality, same interests, same skills…Everything. He is just lumped into a great big Down syndrome box. So no, I don't like my son being spoken of as being Downs.

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  4. I understand what you're saying here. But what I'm getting at is that people put people in boxes no matter what. This stereotyping happens everywhere and it's going to happen with Down syndrome no matter what the wording is. I get this all of the time in other areas of my life. I'm Mormon. A Mormon girl. So I'm automatically lumped together with the Christian Conservative Romeny loving right- and I'm not that either. I think in any facet of life, we're out there to show people that we aren't JUST our labels, though they are a huge part of who we are, how we act, etc. Do you see what I'm saying here?

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  5. It's hard with autism. One doesn't realize my granddaughter has ASD upon meeting her. It takes a while. I was called out early on for sharing the diagnosis so easily. I'm so confused!

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  6. No reason for confusion. Telling people the diagnosis is a matter of choice- whether or not you think it's appropriate to the situation. What I was saying here was more what words we use to describe our kids- along with the words that other people use.

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  7. I've always said the bird has autism. I used to get hung up on the person first language because I didn't want anyone focusing on that big A and not all the wonderful things she is. But, really? I could go either way. She is who she is, I am who I am, we are all who we are- or we have what we have- or whatever. Wait- what do we say about friends who have cancer? Do we call them cancerous? Hey, I'm completely serious about this. I'm actually wondering why we don't. This is a great post. Sharing it!

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  8. I think the difference between cancer and autism is cancer is something that you can (mostly) get rid of. It's doesn't affect the entire lifelong being of the person the way Down syndrome or autism do. Saying someone "has" something kind of implies that they can get rid of it.Which is also another criticism of person first. It implies that they have something they can get rid of.

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  9. Yes, but the difference between religion and disability is people actively try to deny a whole segment of our society rights based on who they *think* they are.Your children are not segregated into different classrooms, denied work in the community, or access to public transportation based on their religion. (just to name a few things) But children with disabilities are routinely segregated based on diagnosis, adults are routinely denied access to the workplace, public transportation, and even housing based on their perceived deficits – based often on just a diagnosis, not on any factual information related to their actual abilities.For many people, saying "Downs person" is a linguistic manifestation of the attitude that someone thinks they know all about you, when really they just know you have extra chromosomes. So, they ask for People First language. And really, it's not that big of an ask, not in the scheme of things.

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  10. First of all, the irony that you carelessly throw around slightly condecending phrases like "Your children are not segregated into different classrooms…etc." when you are talking to a person who litterally just posted about how she has TWO children that fall into those categories, while at the same time talking about the importance of "linguistic manifestation" is almost beyond comprehension.But besides that, I think it is important to note that changing peoples language doesn't change their attitude or their beliefs, and it's most pronounced and only real measurable effect is simply to induce awkward moments with friends and aquantances. So I think we have to ask ourselves, is it worth it?

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  11. On top of that, I get what you are saying, but you can't apply that to the words people use. Children with disabilities aren't segregated because of the word order people use to describe them. And look at the other movements. Look at the blind, def, and autism movements. See what they are saying about this. I'm not the only one.

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  12. Awesome!I've been thinking about this since I read this post the other day. I was thinking about how a mom of a child with Ds (seriously. A "Ds mom" is SO much more concise) kinda jumped down my throat for addressing fellow parents of kids with Ds (there it is again! Pretty unwieldy) as "Ds parents." I was thinking about how if I were addressing a group of parents whose kids all played on the same football team, I'd never in a million years address them as "parents of kids who play football together!" I'd just say, "Hey! Football parents!" Right? The kids are all separate and individual and have their own unique traits and personalities, and I'm not dismissing that by addressing the parents by the one characteristic we all have in common–our kids all play football together, and that commonality is what I'm referring to. Can we not likewise refer to our kids or each other by the common thread of Ds that we share? I think the *content* of what we're saying about them is way more important than the order of the words we use to refer to them.

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  13. OK, so here's my thought. I'm a fan of people first language. He IS autistic doesn't bug me, but she IS Down's does, because "IS Down's" is grammatically incorrect. If there was a good adjective, I think it would be no big deal. But I think what matters SOOO much more is why people are describing them as Down's. Is it that they just don't know people first language? Doesn't bug me, except in work situations, but that's a whole other issue.

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  14. Hmmm…this post was awesome! It actually really made me think…because I usually do take offense. That's just the conclusion that I jump too. And while I'm not sure I'm ready to jump ship on my thoughts, I also really appreciated your perspective! And love following your blog too:)

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  15. I'm with Team Lando. Just from a linguistic standpoint, Down syndrome isn't an adjective, so saying "she is Down syndrome" or "she is Downs" just irritates me from a grammatical standpoint. I suppose if you could come up with an applicable adjective, like . . . I don't know – she is trisomic?? Maybe. That said, however, I have to say that I am a fan of people first language. I totally get that when people see Finn, likely one of the first things they will notice will be the fact that he has Ds, but I don't want that to define him. Yes, it's a part of him, and yes, it manifests in a thousand ways, and yes, it's in every cell of his body, and it's not that I hope people DON'T notice that he has Ds, but he is primarily a little boy. A unique human being who shouldn't be lumped together with any group and defined by this condition. I don't think Down syndrome is awesome, either. Neither do I think it's horrible. It just is. What I think is awesome is Finn.

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  16. I absolutely agree with you! I am an Aspie and so is my 14 year old son. We have our struggles with our "different abilities" but we are also proud of who we are. I have people look at my son and know that there is something different about him. When they ask, "What's wrong with him," I reply, "nothing, he has Asperger Syndrome."Your daughter's have "different abilities" also. And, from what I can see, they are beautiful! Congratulations on being such a wonderful father. I believe that you were chosen to be their father! Hugs,Erica

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  17. I have had people speak of Tily as a Down's baby before and at first it bothered me because of the people first laguage but as I refect back and currently on it I am not offended by it. Everyone with whom I have come in contact with weither they use people first language or not express their love for those with Down syndrome. I don't think by her being called a Downs limits her. The fact is that yes, one of the first if not the first thing they notice about her is that she had Down syndrome. Her features give that away but then they see her smile, her love for others, how her eyes sparkle, and even her bad attitude at time. Down syndrome is a part of her, of who she is and Down syndrome does play a part in who she is; and although I am not thrilled with all that comes with having Down syndrome I would not change anything about her. So I think it would be more benefical for us to show more concern about helping others see the person than weither they use person first language.

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  18. Amen, Lexi. And you should hear MY rant on the Disability VS. Handicap debate. Well, maybe, it's heated…People get so wrapped up with words. Words are hurtful when you let them hurt you. MOST people aren't trying to be mean by saying "That downs baby is beautiful!"… You know? MOST people who don't deal with it every day don't know what to say, So it'd be nice if MOST people who do deal with it gave the rest of us a little slack for not using the proper word order. We alls just gots to calm the heck down. F'reals.

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  19. Just throwing this out there… I think that because Down syndrome itself is simply having an extra chromosome (and we can agree that it is not "being" an extra chromosome) and not actually any specific disability such as blindness might be why it makes sense to say a person has Down syndrome not a person is Downs… Ds is a condition that varies so widely in its possible manifestation that it seems odd to me to say a person IS Ds… to say it that way maybe suggests that there is a set understanding of what it means to be Ds based on shared set of limited characteristics. Anyway, I do get what you are saying and it does seem silly to get so worked up over which position the words are in… but then again as every good writer will admit, in a great piece of work every single word choice and placement matters to persuade the reader to see/feel/know exactly what you want them to…and that perhaps carries over into how our loved ones with Ds are perceived.

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  20. I'm not big on political correctness so I don't take offense at these minor wordings since it's not insulting to have DS so in that sense I agree with you – way overdone! DS pride is important but I do like the people first language, mostly because it corrects that idea that that is ALL they are. I'm the same for my clients, I prefer to say that they are people who happen to have Schizophrenia than they are "Schizophrenics".Abilism and Disabilism is an interesting discussion on how different cultures/folks view it playing out in our society. I always get confused by the Deaf community (have some experience with it) since they have inner splits in how they see themselves – kind of like gay folks and their language…. another conversation I think. Thanks for a thought provoking post!

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  21. I absolutely adore you…and I'm loving the comments as much as the post…Call my kid a retard and I'll scratch your eyeballs out and feed them to the wolves in our woods…Call her a Downs baby and I'll smile and tell you how wonderful she is while hoping that you can see past the Downs part and realize she's more than that…And every time I tell Eric I'm talking to my DS mamas or something I wonder if one of them would ream me out if they heard me refer to them like that

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  22. I really understand the point that you are trying to emphasize and appreciate you for this post. It is indeed the most important thing that special persons should be treated well. I don’t understand the debate that keeps on going on how to treat them or call them. They are a part of our society and must be treated as any other person!!!

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