Comments on Fighting Monsters with Rubber Swords: Pet monsters are a lot of responsibility

I realize I am coming into this discussion WAY lat...

2011-09-11T17:28:52.168-05:00

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.

I am not so close to this whole conversation havin...

2010-01-09T14:35:45.673-06:00

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

When my young son notices how different from other...

2009-05-30T08:35:47.369-05:00

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.

I am a person with Down syndrome. I am not a Down...

2009-03-31T21:38:00.000-05:00

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!

I totally understand what you're saying. I kind of...

2009-02-01T23:11:00.001-06:00

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!

I totally understand what you're saying. I kind of...

2009-02-01T23:11:00.000-06:00

Well, of course that's fine with me. As long as y...

2008-11-25T23:50:00.000-06:00

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.

I disagree. With everything you said. People fir...

2008-11-25T23:38:00.000-06:00

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.

Nope, just bad eyeball genes. Julie and I are bot...

2008-08-26T14:46:00.000-05:00

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

P.S. - I forgot that I wanted to comment on Schuyl...

2008-08-26T14:45:00.000-05:00

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.

There is definitely a fine line with this language...

2008-08-26T12:45:00.000-05:00

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).

Love your post. Agree with you completely. I've wr...

2008-08-25T20:57:00.000-05:00

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...

Gee, and I thought "non-disabled" was foolish beyo...

2008-08-25T09:49:00.000-05:00

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

I agree with many of the comments here, especially...

2008-08-24T20:07:00.000-05:00

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.

But plenty of people are born with plenty of di...

2008-08-22T12:29:00.000-05:00
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.

So if I am a woman I should be referring to myself...

2008-08-21T12:28:00.000-05:00
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.

Abso-fuckin'-lutely Rob.

2008-08-21T11:12:00.000-05:00
Abso-fuckin'-lutely Rob.

Rob, this was a really well-written post. I agree ...

2008-08-20T23:11:00.000-05:00
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.

If disability were natural in the way you are a...

2008-08-20T19:42:00.000-05:00
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?

Amen

2008-08-20T19:16:00.000-05:00
Amen

Rob, this is a great post and puts into words for ...

2008-08-20T18:14:00.000-05:00
Rob, this is a great post and puts into words for me why I feel so weirded out by the entire idea.

didn't read the whole thing, but it appears much b...

2008-08-20T17:58:00.000-05:00
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"

Throughout college I received a small scholarship ...

2008-08-20T16:13:00.000-05:00
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.

As much as I struggle trying not to offended peopl...

2008-08-20T14:53:00.000-05:00
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.

THANK YOU KAREN, for this...

"taking an una...

2008-08-20T13:44:00.000-05:00
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!

Comments on Fighting Monsters with Rubber Swords: Pet monsters are a lot of responsibility

I realize I am coming into this discussion WAY lat...

I am not so close to this whole conversation havin...

When my young son notices how different from other...

I am a person with Down syndrome. I am not a Down...

I totally understand what you're saying. I kind of...

I totally understand what you're saying. I kind of...

Well, of course that's fine with me. As long as y...

I disagree. With everything you said. People fir...

Nope, just bad eyeball genes. Julie and I are bot...

P.S. - I forgot that I wanted to comment on Schuyl...

There is definitely a fine line with this language...

Love your post. Agree with you completely. I've wr...

Gee, and I thought "non-disabled" was foolish beyo...

I agree with many of the comments here, especially...

But plenty of people are born with plenty of di...

So if I am a woman I should be referring to myself...

Abso-fuckin'-lutely Rob.

Rob, this was a really well-written post. I agree ...

If disability were natural in the way you are a...

Amen

Rob, this is a great post and puts into words for ...

didn't read the whole thing, but it appears much b...

Throughout college I received a small scholarship ...

As much as I struggle trying not to offended peopl...

THANK YOU KAREN, for this..."taking an una...

THANK YOU KAREN, for this...

"taking an una...