Tuesday, February 5, 2008

An Autism Parent on Kathie Snow's People First Language

One person has set out to make sure to refer to people first and disabilities/disorders second. Her name is Kathie Snow. One can read the paper she wrote which defined her People First language on her website Disability is Natural. She spoke at Central Michigan University (where my husband works) last September--before the creation of this blog.

In regards to People First Language Snow writes:

"Contrary to conventional wisdom, individuals with disabilities are not:• People who suffer from the tragedy of birth defects.• Paraplegic heroes who struggle to become normal again.• Victims who fight to overcome their challenges.
Nor are they the retarded, autistic, blind, deaf, learning disabled, etc.—ad nauseam!

They are people: moms and dads; sons and daughters; employees and employers; friends and neighbors; students and teachers; scientists, reporters, doctors, actors, presidents, and more. People with disabilities are people, first..."

Anyway People First Language is the reason why I always refer to "individuals with autism" on this blog rather than write "autistic individual." I have to credit Ms. Snow and a little bit of peer pressure for choosing the words that I do in terms of autism. We talked about People First Language in my parent group long before the afore-mentioned advocate visited our campus. The organizer of our group brings up this principle when a certain someone forgets and says autistic when referring to, yes, "an individual with autism."

People First Language is hard for me to adapt to because in my journalism classes I was trained to be concise. We had exercises where we would cross out words to make sentences shorter. Writing "my son with autism" is only one more word than the other way, so that is one reason that I make this concession.

However, did you notice how I referred to myself in the title? If I used Snow's method I'd have to write "a parent who has a child with autism" rather than "autism parent." That's a six word difference. My long title for this post would be book-length if I did it the other way. Besides, I don't mind being called an autism parent. I am sincere when I say I don't think that I'm degrading myself.

A part of me wonders if this People First business isn't just a bunch of politically correct gobbley gook. I suppose it does sound nicer to write "individual with mental retardation" rather than "mentally retarded individual" because the word "retard" and "retarded" has been used in a degrading way in the both past-- and at times in the present.

But what about the word autistic? Has that ever been used in a degrading way? I don't think of the word autistic as being one that degrades someone. Maybe it's just a personal quirk of mine, but I actually like the way the word autistic sounds. The sound "ism" in the "a" word isn't as appealing to me as "istic."

Also, have you noticed that some people with Asperger's Syndrome refer to themselves as Aspergians or Aspies? That's not using People First Language. That's taking on autism as an identity and doing so with a certain amount of pride. Is there anything wrong with that?

Of course using the term Aspergian or Aspie does kind of defy the "autism doesn't define me" statement which seems to be popular in some circles. However, to some individuals being autistic defines them in the same way as having green eyes or brown hair can define a person. Is it Ok to say I'm the proud mom of a blue-eyed boy and/or a hazel-eyed boy? Or do I have to write "one boy with blue eyes and one boy with hazel eyes?"

I wish I could just defy the People First language altogether and write the word autistic all the time, but I can't. Why? Because I have a dear friend who has adapted this principle with her whole heart and soul. If I start writing the word autistic, I'll start saying it too because I'm the absent-minded professor sort without the degree or profession. Do I need or want to create that kind of tension between this friend and I? No. So I'll just have to continue writing "person with autism."

Maybe someday I can convince her that using "People First Language" is a personal choice and that one shouldn't begrudge someone if they choose not to use it and vice versa. However, for reasons I cannot go into, now is not the time to bring that topic up. (Of course, there is a chance she'll read this and if that is the case I hope she doesn't get too upset at me).

In the meantime, I will go out on a limb a bit and use the term autism parent. It's just more practical. What do you think?


Casdok said...

I agree i think its personal choice. My choices have changed over the years so i think it also depends on where your at.

J said...

Yes, I think you are probably right about that (in terms of where a person is in life.)

Marla said...

I agree with Casdok. At some point these things become an issue you can tackle and at other times many parents are just trying to survive and may not have knowledge of all of these things and should not be made to feel bad for saying things a certain way. I personally try not to over think the issue.

Anonymous said...

When you use the phrase "autism parent" if means that you have the diagnosis of autism. kathie snow is right - there's more to it than just words - it's the intent behind the words........people should always be first - disability or not...........

J said...

Well literally you may be right about what autism parent means, but in a cultural sense it means parents of someone who is autistic.
At least that's what it means on this blog.

As for intent, my concern is that Katie Snow might be inadvertantly making "autistic" a bad word. It's not--especially not according to a lot of other bloggers, including autistics, who use the word frequently.

I also am concerned about people telling others what words they should use to refer to their own children. In terms of people first language: should we say also people who are athletic instead of athletic people? Hmm...

Anonymous said...

as one who is in the media (and one who prefers NOT to use the word autistic) i think, while it may be a shoulder-shrugging issue for some, why not err on the side being polite. it's not as if others are as bothered by using 'xxx with autism' and NOT using 'autistic'...why not make it a practice to use the term that is LEAST likely to offend anyone?

J said...

It doesn't surprise me that as one who works in the media you are for erring on the side of being polite. Being politically correct is a big part of your job. If you wrote a story or did a broadcasted piece that offended a huge group of people then you would be in a whole lot of trouble as you well know.

It still baffles though me to why the word autistic is offensive. What the heck is wrong with the word? I'm kind of offended that it's politically incorrect to say it.

In terms of my world, I have to face this particular challenge often in terms of writing posts for this blog or in referring to my son. So to say a person with autism rather than to say (or write) autistic will add quite a few words to the ones I already have to speak or write in my lifetime. Often I do err on the side of political correctness depending on the topic of my post. However, I'd much rather just use my favorite word, "autistic", most of the time. It's just a matter wanting to exercise personal choice rather than being held back by pc terms.

Anonymous said...

Julie L.

If Kathie Snow has read this post, I can only imagine how she must feel. The first comment by Casdock says it all for me - it`s a personal choice. Might I also get away with saying that the use of the N word is a personal choice?

This comment by the author of this post floors me - I wish I could just defy the PFL altogether and write the word autistic all the time, but I can`t. Why? Because I have a dear friend who ...

I think the point is your dear friend, who has recognized the hurt caused in the language we use to address people with disabilities, wants you to see past the words - not use other terms or words begrudgingly. The idea she is fighting against is not eliminated simply when we stop using the terms - its a change in your mind set she is after. You`ve completely missed the boat here.

I`ve only very recently been introduced to this topic but if the words I use are hurting people I want to learn to stop.

I was in a meeting recently with a new acquaintence who used the word `gay` to describe someones actions. I informed him that his use of the word offended me as I have a gay son. He immediately apologized and said he would not use it in that manner again. He didn`t argue with me that he didn`t think it harmful or that there are some occasions in which it might be used properly. He certainly didn`t tell others he didn`t see anything wrong with the word, that I was just being politically correct,or that he would not use it only because I was such a great friend. He took my feelings into account and the fact he might also be offending others and made a decision to NOT HURT. (what is the definition of true friend anyway)

As for your use of language in the media, the firs thought that entered my head was `systemic`.

Your comment about being a proud mom of a blue eyed boy is incredible to me. Since when has someone treated someone else badly because they had blue eyes, when have they been refused employment, segregated in asylums, teased etc. etc. Perhaps if Hitler had succeeded the words might have had a different meaning.

I would suggest you call your `dear friend`, apologize and ask her how you might help stop her (and many others) pain.

Terry D

Julie L. said...

Kathie Snow probably did see this already as it was posted a year ago. I agree that she probably didn't like what I wrote. My point is that she labeled the word "autistic" bad when I don't think the word necessarily ever had negative conotations. I always thought of it as a neutral word until I got snapped at and talked down to for using it in conversation in a neutral way. I forgave the person who snapped at me, but I resented the notion that "autistic" was a bad word to use. In my opinion (and I suspect I'm in the minority here), the people first mantra seems to add stigma to our cause rather than defeat it.

Case in point-- I might be an undiagnosed person with Apserger Syndrome and if I ever get diagnosed I would proudly say "I'm Autistic." It IS a personal choice.
However, I've been respectful and have used people first here on this blog despite my preference.

The eye color thing was a neutral example. I'd just rather say I have a blue eyed boy or a hazeled eye boy than put "people first"--boy with blue eyes, boy with hazel eyes. My eyes are hazel, by the way and I do not put one eye color above the other. Am happy to have a boy with each respective eye color.

As for my dear friend, she lost one of her sons with autism just before Christmas two years ago. His funeral was on Christmas EVE. Putting the silly people first stuff aside, I love her and did whatever it took to get her through that very difficult time including missing my own dad's 80th b-day party. : ( I put her needs first before my own family's needs and do not regret it, though I wish for everyone's sake things would have been different and that her son with autism would still be with us today. And yeah, I respect my friend's word preference and try to be mindful of it in her presence, though I hope she wouldn't snap at me if I forgot.

Anyway, I also co-organized a memorial walk for her son during the month of April that year, and yes, was mindful of People First Language.

Tanya Savko said...

Julie, I don't know if you'll get this as your blog appears to be static (I have a static one too), but I wanted to contact you and leaving a comment was the only way I could find to do so. I, too, refer to myself as an autism parent and my son as autistic. I found it interesting that Terry D., who left a previous comment, wrote "...I have a gay son." He did not write "I have a son with gayness." Why is it wrong or offensive to say, "I have an autistic son"? I can understand why he would be offended that someone used the term "gay" to describe a person's actions. I am offended by that as well - it is used in a derogatory way.

I believe that if I say, "I have an autistic son" I should not be scolded. And I respect someone else's choice to say, "I have a son with autism." Anyway, I just wanted to connect. Wishing you the best.

Julie L. said...

Hi Tanya,
Thanks for connecting. It's been awhile since I wrote that post. Am glad you agree. I let the previous commenter's comments slide off, but you are right... Terry D. didnt use first person language either. Good catch! As time has gone by it has become apparent that people first language isn't that popular in the autism community. As for me, I still think auistic should be a word to be proud of.. .not avoided and am still fine with calling myself an autism parent. As for my blog, am hoping to restart soon. We moved twice in 5 years from Michigan to the state of Washington, and then to Illinois. It's been kind of difficult to keep up with everything. Am homeschooling my son as well.

Anonymous said...

"People on the spectrum" is a phrase I find myself writing more and more, in order to be inclusive.