Monday, September 14, 2009

Another Arena for Inclusion

Today's slice of my parent-trainee experience has to do with the social work class that is part of the LEND trainee requirements in our program: Social Work 644, Issues in Developmental Disabilities.

It's a distance-training course, that was originally conceived with the lectures broadcast on public television. Now the lectures and course outline have migrated to the web, where they are freely available (for sure until February 2010 at least, at which point funding issues may become a problem). Let me give you that web site again, http://www.iidd.wisc.edu/. Quickest way to the lectures is the three links at the top of the page, Module A, Module B, Module C. Of course to get credit for the class (academic credit or CEU) you have to register & pay, which gets you access to the readings & assignments & exams. OK, that's my public-service announcement for the day!

If you actually "take" the class, there's a pre-requisite document that is so important it's attached as an appendix to the syllabus. Here's what the syllabus says:
Throughout your writing in this course, you will be expected to write using Person-First Language. A required reading, "But I Don't Have a Disability!": Writing Inclusive Documents is offered in week 1... Person-First Language is expected in student exams and discussion postings and points will be deducted for inappropriate use of language.

Elvis Sightings readers who hang out in disability-awareness circles will have encountered this issue already and formed their own opinions, which I'd love to hear in the comments! Person-first language is not new to me either, and it's how I blog. But my family and "meat-space" friends might appreciate a closer look at the principles, and the controversy (the latter of which I've not really yet seen addressed related to the course.)

The idea of respectful and person-first language in writing about people with disabilities is about a whole lot more than "political correctness." It's about changing attitudes, challenging stereotypes, breaking down barriers, treating people like people instead of some kind of marginalized other. In a word, it's about: inclusion.

Here are some examples from the Inclusive Documents paper:
  • Instead of the disabled, the crippled, the handicapped, a cripple or invalid use persons or people with disabilities; disabled persons or people so that you will put people first and avoid generalizing people as if they belonged to a disability community.

  • Instead of confined, bound, restricted to or dependent on a wheelchair use wheelchair user or person who uses a wheelchair so that you will emphasize abilities, not limitations.

  • Instead of epileptic use person who has epilepsy or seizures so that you will put the person first.

  • Instead of normal (when used as the opposite of disabled), whole, able-bodied use nondisabled so that you will use a neutral, appropriate term instead of implying that someone with a disability is abnormal.

The document also makes points about how not to frame an anecdote or story:
  • Don’t focus on the disability unless it is crucial to a story. Avoid tear-jerking human interest stories about incurable diseases, congenital impairments or severe injury.

  • Don’t portray successful people with disabilities as heroes because of, or in spite of, their disabilities. Similarly, don’t sensationalize disability or use emotional descriptors such as unfortunate, pitiful, and so forth. Avoid “tragic but brave” stereotypes.

I'll highlight one further "don't" from the list: Avoid euphemisms such as challenged, physically inconvenienced, handi-capable, mentally different -- disability groups consider these terms condescending because they reinforce the idea that disabilities cannot be dealt with directly and candidly.

So, that's what our leadership group, and anyone else taking this class, and many others I'm sure, are being taught. And for the most part, it's all material that's already comfortable to me, and I'd encourage others to work on. Personally, I have not chosen to refer to Joy as autistic, or epileptic for that matter (she's so much more than either of those terms!)

Interestingly, the document avoids "going there" with autism. Doesn't use it as an example at all, even though the rest of the course clearly situates autism among the "developmental disabilities" next to epilepsy and cerebral palsy and others. I suspect it might be because the autism self-advocacy community has some substantial dissent when it comes to person-first language. One of the most powerful and succinct arguments for why not to use person-first language in the case of autism comes from Jim Sinclair, in his 1999 piece Why I Dislike "Person First Language". Here are some snippets of his three points:
I am not a "person with autism." I am an autistic person. Why does this distinction matter to me?

1) Saying "person with autism" suggests that the autism can be separated from the person. But this is not the case....

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part. Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness"...

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.... I am autistic because I accept and value myself the way I am.

The piece is not long, and is well worth taking the couple of minutes to read in full.

However -- my sense is that there is at least some disagreement in the autism self-advocacy community about this. Some prefer the term "autist" rather than "autistic person," some are fine with person-first language.

Personally, I am happy to refer to someone as "autistic" if they want to be referred to in that way. I feel kind of the same way about racial/ethnic labels: Do you as an individual prefer me to say Hispanic, or Latino, or refer to your country of origin? I'll do my darndest to keep your personal preference in mind, and also not bring it up if I wouldn't feel the need to specify white / Anglo / Caucasian. And when I'm talking about more than one person or don't know what an individual prefers, well, I just have to try to go with what currently seems to be one accepted term or another, and figure that a good-faith effort is fine.

With Joy, I have no idea what she's going to prefer. I've got to believe that she'll be able to tell me someday.

6 comments:

mama edge said...

As always, you've given me plenty of food for thought. I have to admit that I assumed the "persons with" language was just the latest PC fad. I've never been too het up about labels, so long as the intention is to be respectful and informational in using them. After all, it seems that one person's label is another person's epithet, so no matter what we can't ever please all the people all the time.

I only hope there isn't ever a movement to do away with labels entirely. They may be clumsy at times, but they also make the world a more comprehensible place, at least for me.

datri said...

It's interesting, since I run in both the autism and Down syndrome circles, how the groups (and then groups within groups) deal with person first language and other issues. Often, it's polar opposites.

And the subtleties can make your head spin. Yes, I get the "persons with" language, it's second nature to me now. But the other stuff, I just can't seem to get.

rhemashope said...

it is interesting, and I'm with mama edge - i thought saying "person with" was the latest acceptable language. or there's my girlfriend who always insists on saying "person who happens to have" (seems really PC to me). labels are labels and not everyone is going to be happy with them, but somehow we still need them. thanks for sharing Sinclair's piece.

JoyMama said...

Mama Edge - good point re: label/epithet, and also the importance of having labels exist! One thing that's come up in the lectures is the difference between labels in colloquial usage, labels as disciplinary terms of art, and labels with legal definitions (and one term might have one definition at the state level, another at the federal level, another in the schools...)

JoyMama said...

Datri - I wonder to what extent the differences between language preference in the Down syndrome circles and the autism circles mirrors what we've got going with the differences in epilepsy vs. autism circles (as in, I don't think anyone is arguing for the use of the term "epileptic"!)

JoyMama said...

Rhemashope - I agree, "person who happens to have" feels a bit above and beyond to me too. Though I've used that construction occasionally myself depending on circumstances!

I could do a whole 'nother post from the lectures regarding the labels for "mental retardation," which was the latest and greatest when adopted back in 1961 but is now in the process of being rejected as too static, not sufficiently encompassing of the way people change and grow. The American Association of Mental Retardation (AAMR) has fairly recently become the American Assocation of Intellectual and Developmental Disabilities (AAIDD) for example. And the terms intellectual disability, learning disability, cognitive disability, or any of those with the word "impairment" substituted for "disability" are all floating around out there. It's enough to make one's head spin!