Mostly they are a pretty supportive community that embraces different perspectives. With one exception. They feel like it is their mission to correct other people's language.
I frequently asking about methods to help them correct their friends, family members, co-workers etc. And it appears that the majority of the parents who respond are pretty happy to go around correcting everyone around them, given the right support.
Really? "Correcting" people? Like they are 12 years old and have done something wrong?
What is it, you ask, that is so important that the DS community has to go around chastising people?
People First Language.
People first language says that you have to say " baby with Down syndrome" rather than "down's baby". That they are first and foremost a person who happens to have DS.
What's the big deal, you may ask?
Good question. Somehow, somewhere, the some people in the disability community were convinced that if you put DS first, as a descriptor, that it means that the speaker does not see the child as a person first.
I have difficulty with the underlying assumptions of this logic. Because in what rule book does it state that simply because a descriptor comes first, that it limits the subject to only being defined by that word?
Really? "Correcting" people? Like they are 12 years old and have done something wrong?
What is it, you ask, that is so important that the DS community has to go around chastising people?
People First Language.
People first language says that you have to say " baby with Down syndrome" rather than "down's baby". That they are first and foremost a person who happens to have DS.
Good question. Somehow, somewhere, the some people in the disability community were convinced that if you put DS first, as a descriptor, that it means that the speaker does not see the child as a person first.
Huh? Who could deny that this little person embodies personhood and humanity?
I have difficulty with the underlying assumptions of this logic. Because in what rule book does it state that simply because a descriptor comes first, that it limits the subject to only being defined by that word?
For example, we often refer to groups by the attribute that gives them group membership. Like the gay community, or the black community, or the Christian community. Does anyone for a second believe that this is the only thing that defines them? That all of the members of this group don't have other attributes which make them unique human beings? That I am marginalizing someone if I refer to them as a Christian man or woman?
Why are the rules suddenly different when it comes to the disabled?
I met an elderly woman a few years ago at Costco who stopped to talk to me about Phoenix. She spoke with love and pride about her "Downsy girl", her daughter with Down syndrome. It was obvious she had high expectations of her daughter and proudly told me that her daughter recently was on vacation in Hawaii and learned to surf (which totally rocks by the way!).
Why are the rules suddenly different when it comes to the disabled?
I met an elderly woman a few years ago at Costco who stopped to talk to me about Phoenix. She spoke with love and pride about her "Downsy girl", her daughter with Down syndrome. It was obvious she had high expectations of her daughter and proudly told me that her daughter recently was on vacation in Hawaii and learned to surf (which totally rocks by the way!).
Obviously, this was a mother who put no limitations on her daughter, yet she still described her as "her Downsy girl."
I could have chosen to write her off as someone who wasn't invested in promoting the talents and attributes of the the DS community if I had focused on her language choices. Instead, I listed to her message and to her heart. This woman spoke with love, and clearly saw her daughter as a person first.
This is why when I see the argument for people first language I know it is based on faulty logic. It is also why this argument just doesn't ring true to people outside of the community. In fact, it promotes a lot of eye rolling and a perception that we nit pick others. Which we do, if we use the logic when we don't use PFL that we don't see people with DS as people first.
Which really isn't what the disability community wants to achieve. We want our kids to be accepted, to be treated as equals and to have all the benefits that every other member of society receives.
Here's what we should be saying:
Adults and young people with DS want to be talked about in this way. They want to hear "person with Down syndrome". They like the way it sounds. It makes them feel as if they are being accepted as a person and that the speaker sees past the extra chromosome, sees past the disability and sees their friend, neighbour, client, student etc.
This, my friends, is what advocating for our children is all about. It is about finding ways to educate others about the point of view of people with DS. Or, as I tell my students "getting what you want from someone without pissing them off". This is the goal that is being lost.
If we approach people first language from the point of view of the people who are requesting it, it makes sense. It doesn't cause eye rolls. It doesn't sound like lecturing. We're not correcting. We are creating an atmosphere of respect because that is what people with Down syndrome are asking for, and we are listening to them.
It's not trivial and it's not nit picking - it's advocating.
Right now I use people first language myself, but I won't correct others. If there comes a time when Phoenix hears it and wants some help addressing it, then I'll be there backing her up. But until then friends and family can feel free to express themselves without worrying if they have said the right thing the right way. They can "Down's this" and "Down's that" all the way to Kansas and back as long as they treat my daughter with love and respect. Actions speak louder than words in my world.
This is why when I see the argument for people first language I know it is based on faulty logic. It is also why this argument just doesn't ring true to people outside of the community. In fact, it promotes a lot of eye rolling and a perception that we nit pick others. Which we do, if we use the logic when we don't use PFL that we don't see people with DS as people first.
Which really isn't what the disability community wants to achieve. We want our kids to be accepted, to be treated as equals and to have all the benefits that every other member of society receives.
Here's what we should be saying:
Adults and young people with DS want to be talked about in this way. They want to hear "person with Down syndrome". They like the way it sounds. It makes them feel as if they are being accepted as a person and that the speaker sees past the extra chromosome, sees past the disability and sees their friend, neighbour, client, student etc.
This, my friends, is what advocating for our children is all about. It is about finding ways to educate others about the point of view of people with DS. Or, as I tell my students "getting what you want from someone without pissing them off". This is the goal that is being lost.
If we approach people first language from the point of view of the people who are requesting it, it makes sense. It doesn't cause eye rolls. It doesn't sound like lecturing. We're not correcting. We are creating an atmosphere of respect because that is what people with Down syndrome are asking for, and we are listening to them.
It's not trivial and it's not nit picking - it's advocating.
Right now I use people first language myself, but I won't correct others. If there comes a time when Phoenix hears it and wants some help addressing it, then I'll be there backing her up. But until then friends and family can feel free to express themselves without worrying if they have said the right thing the right way. They can "Down's this" and "Down's that" all the way to Kansas and back as long as they treat my daughter with love and respect. Actions speak louder than words in my world.
YES! THANK YOU!
ReplyDeleteI've written about this a couple of times and have gotten in a lot of trouble for NOT using person first.I also have a son with autism. We say "autistic" all of the time. And you know what? MOST of autistic adults PREFER you to call them autistic or an "Autie" or "Aspie". Why? Because they see their autism as making them the person they are- they like themselves, autism included.
Def and blind people don't like person first, either. In fact, the blind community has gone as far as denouncing it.
Thank you for being another voice in the plea for rationality. I swear, I'm so sick of hearing people cheer when someone says, "I totally told that old guy off for saying my daughter is Downs!"
Blerg. Fantastic post!
You know Lexi, I read you blog post on PFL and really enjoyed it. I liked the information you shared about the different communities and their treatment of PFL. I find myself just as annoyed about how the community deals with this issue, which is what set me off this time. Thanks for your comment:)
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