Saturday, March 22, 2008

Talking Neurodiversity Blues

The “n” word came up yesterday. I wasn’t sure how to explain myself. I was talking with two professors at my university about some presentations I’ve agreed to make over the next few months. One of them, with whom I’d discussed autism and advocacy matters before, mentioned “neurodiversity.” She said that I should be sure to include this important concept, as so few people have heard of it. I had to explain that I use the term less than I used to, and wasn’t sure it was helpful to include it.

How could a word simply describing a diversity of minds become controversial? The professors didn’t understand this. Of course I wasn’t able to offer a clear explanation. After all, I was speaking with them, not writing, and had not prepared a statement about this that could be pulled up from memory. I mentioned something about misconceptions of autistic adults as attention mongers who advocate for services for the “higher functioning,” while ignoring those with more significant disabilities. This didn’t make much sense to them (or to me, really), so I moved on to the next topic.

On my mind was the last comment I’d received on my last post. Early yesterday morning, someone had noted that people like me only “pretend to care about those with less ability.” A recent e-mail, too, had asked why people like me can’t just mind our own business, and leave more qualified persons to attend to the question of “what should be done about autism as a whole.” Neither of these comments mentioned the “n” word, but both of them referenced a stereotype which I’ve seen applied sneeringly to a semi-mythical group called “the neurodiverse.”

The idea that my intention is to take anything away from autistic people labeled “low functioning” troubles me. I do not know how to be any clearer about this than I have been. What I support is respect and accommodation for all autistic people. There are many, many ways to approach this. As an individual, not an organization, my time and energies are limited. I tend to focus on the power of language and on images of autism in the media, and the ways these can impact the lives of autistic people, creating very real and disastrous consequences.

Language is an area of special interest to me. Given that, I am very aware that the term “neurodiversity” is not exclusive to autism. It is about respect for a much broader range of differences. To me, this includes those who are sometimes called typical, non-autistic, NT or normal, and also those with intellectual disabilities and those believed to have intellectual disabilities whether or not this is actually the case. I don’t believe there is a difference in value of human beings based on ability or any other type of categorization. But in the interest of efficiency, I cannot state this in every post I make. There simply isn’t time to write lengthy disclaimers stating everything I do and don’t believe. Most of my standard disclaimer can be found here, and I’ve made it easily available under the heading “Starting Squares.”

Sometimes people make assumptions. Hearing the “n” word creates for some a picture of parent-hating, problem-ignoring, head-burying disability deniers. I could spend my time fighting that, or I could let it go. The concept of neurodiversity is an important one. The word itself seems to be most popular among its detractors. For now, I’ll save my arguments for those who would deny the right to “autistic” to people like me.

20 comments:

  1. I've long been aware of an extreme resentment in our society leveled against anyone perceived as "lazy" or "not doing his/her share." I'm not sure who these attackers are as a group, but I hear from them all the time in the media. It seems they form the majority of US citizens.

    Such people are always on the lookout for anyone who would claim "special rights" or get a "free ride." There is a harsh, punitive quality to their philosophy of life.

    Writing like yours, Bev, does a lot to counteract such attacks, which are directed at the poor, the disabled and anyone else who's struggling outside of the "mainstream." Keep up your good work!

    ReplyDelete
  2. And what do such people mean by more qualified?

    I think they mean simply, whatever there own prejudices dictate.

    Having a post graduate qualification in special education for autism ought to make me qualified ought it not? and having served some four years on the board, of what is still the major charity for the entire spectrum, ought to as well considering that the NAS is a lot more than just talk.

    None of it would satisfy the critics though, if I were the re-incarnation of Leo Kanner himself, with the body of Bernie Rimland, it wouldn't make some people happy because I would still be annoyingly the wrong kind of autistic for them.

    In some ways my pursuit of the academic has been driven by the desire to validate myself in others eyes beyond what I believe for myself. The desire to be taken seriously and not forever shunted off into someone elses notions of what being autistic is. And of course it is an elusive goal, it is never enough for the critics, so I will go on chasing rainbows.

    ReplyDelete
  3. The thing that comforts me regarding this sad point is that someday, maybe twenty or thirty years from now, when we're more accepted, that people will be shaking their heads that we as a society managed to demonize "diversity" once again.

    ReplyDelete
  4. I am sorry that the trolls have been visiting. I would disagree with websafe: I hope that these people are not the majority of US citizens. They just seem to be more vitriolic and vocal than the silent, decent majority - there is a distinction.

    Try to ignore those people. They are bitter and hurting for some reason that has nothing to do with you.

    I also hope that someday everyone's humanity and value will be celebrated. I do not believe that recognizing or celebrating one group need mean that another will be neglected. That doesn't make sense.

    ReplyDelete
  5. This comment has been removed by a blog administrator.

    ReplyDelete
  6. Mr. Best,
    Your comment has been removed. Contrary opinions are welcome here, but I will not allow links to sites which regularly publish hate speech and libel. If you would like to comment here, please disable the link in your name.

    Foresam's comment was, "I would be happy to prepare a lecture on neurodiversity for you."

    ReplyDelete
  7. The nice thing about the word neurodiversity is that it does, in fact, imply the very broad range of inclusion that you mention. Just because people who disagree with you use it as an insult, does not make it controversial or something that you need to qualify. People use words like, Jew or Liberal or gay, or for that matter Conservative or WASP or whathaveyou as insults too. People are goofs, what I can I say.

    ReplyDelete
  8. To me you have always come across as supportive to all. You do a great job.

    ReplyDelete
  9. I agree with VAB, that others distort the meaning of language all the time.

    Each of us must make up our own mind, but as I've never seen any hint of discrimination against other autistics in your use of the "n" word, I would be inclined to keep using it (indeed, shout it from the mountain tops).

    If we allow others to control our use of language, then I feel we allow them some level of control of us.

    Neurodiversity has not been defined as one thing to the general public at this time. I'd much rather have you putting a positive definition out there, then others painting people into boxes.

    Joe

    ReplyDelete
  10. I think neurodiversity opponents may be getting sick of this pompous morality preaching done by such advocates. Where do these advocates get off pretending they're trying to get the sanctity of all human life recognized, when today that mostly has already been done in our culture?

    The neurodiversity people will moan about diversity to justify their oppressive views, and put numerous words in quotation marks within sentences to equivocate. How dare anyone portray supporters of this ideology as being out to stick up for the downtrodden and unfortunate, when it is the opposite.

    These people are not about respect and inclusion, because their intentions to keep unfortunate people down, and keep good things away from them belie this. I believe they are about greed and paternalistic domination. Then the neurodiversity people condemn the hateful attitudes and "whining" of the opponents. God forbid anyone get stirred up about sick views because they dare disagree with them.

    I hope such people don't acquire much real power. They could have elaborated on a practical idea of diversity without pushing other horrific ideas by now. But their intentions go much further than those implied in their calls for acceptance and diversity.

    --lurker

    ReplyDelete
  11. "Where do these advocates get off pretending they're trying to get the sanctity of all human life recognized, when today that mostly has already been done in our culture?"

    Therein lies the problem: "mostly" (quotation marks used for quotation)is simply not enough.

    ReplyDelete
  12. The only major problem I have with neurodiversity is when people try to separate it from the disability rights movement (i.e. "We're not disabled! We're neurodiverse!") or when they only use it to advocate for people most like themselves (e.g. if people without intellectual disabilities say that they're neurodiverse but people with intellectual disabilities are not; or that only people with genetic conditions can be neurodiverse, but people who've had strokes or head injuries can't).

    But I haven't seen Bev do any of that. I also think that people tend to see neurodiversity advocates doing those things when they're not. There's still a huge prejudice in society that says disability is bad. So then there's this idea that the only disabled people who don't think their lives totally suck must only be "mildly" disabled. (Sorry about the awkwardness of that sentence ;-)).

    Which is strange, because there are lots of disability rights advocates whose disabilities wouldn't be popularly thought of as "mild."

    ReplyDelete
  13. Well Bev, you have a point there. And tera, I've been thinking about some of those things you mentioned. I can't find a clear message from neurodiversity about whether they consider those among them disabled or diverse, or if those two words kinda mean the same thing to them. What they say seems to vary from advocate to advocate, probably whichever way it works for their arguments.

    They seem to try not to explicitly embrace actual disability when arguing, because that would be much more rejected as an idea by who they try to convince, but they rather embrace whatever they would call "diversity", where disability likely somehow is included in their idea of diversity.

    I just don't see how someone can be or should be convinced that disability isn't bad. As to disability rights activists whose disabilities may not be mild, I doubt they have such actual disability embracing views as espoused by neurodiversity. I think it's risky to support views/ideologies that are so vaguely and abstractly defined.

    --lurker

    ReplyDelete
  14. "Neurodiversity" is a relatively young movement, whereas the concept of disability rights has been fairly prominent for a few decades. Here's a good place to start for that: http://www.raggededgemagazine.com/

    And note that the "severity" of an advocate's disability doesn't necessarily correspond with their degree of pride.

    I, too, vehemently oppose the recently-fashionable, rather perverted interpretation of "neurodiversity" that some Aspies use to infer that they're some sort of superior nerd-race or something. That's just as stupid as the idea that autistics -- or folks with any kind of disability -- are inferior to non-disabled folks. In fact, it's essentially the same concept: Me better than you. And it's wrong as hell.

    I'm often at a loss to respond to folks who assert that I’m “too high-functioning” to denounce functioning labels, except to say, “Okay, I don’t fit your stereotype? Well how ‘bout this person, this person, this person? Yes? You see their appearance, their movements? They’re definitely low-functioning, you say? Well, take a look at this, and this, and this. That ‘low-functioning’ person wrote that, made that, did that. And they’re not miserable, and they don’t believe in functioning labels either.” And then folks can disbelieve, they can decide they’re looking at “exceptions”, they can change the functioning labels their stereotypes dictate, or they can change their minds. Really, I don’t know how else to respond.

    ReplyDelete
  15. I should also note that I had the advantage of having close friends who were physically disabled and involved with the disability rights concept/movement years before I encountered any autie self-advocates. When I did find auties like Amanda Baggs -- and Bev -- the concept in its fundamental form seemed to apply quite seamlessly between "disability" and "autism". I have no problem being associated with either.

    ReplyDelete
  16. I agree with Joe that the haters are trying to control our language as a means of exerting control over us. Neurodiversity is a strong word that clearly expresses a philosophy of valuing neurological differences. That's why people like John Best are attacking it so vehemently, because they recognize its power. Don't let the haters intimidate you into changing your use of words.

    ReplyDelete
  17. Hi, lurker,

    I can't find a clear message from neurodiversity about whether they consider those among them disabled or diverse, or if those two words kinda mean the same thing to them.

    You're right--different people say different things. There are neurodiversity (and disability rights) activists who say that disability is a valid form of difference, and should be respected as just one of those things that make humans different from each other.

    As to disability rights activists whose disabilities may not be mild, I doubt they have such actual disability embracing views as espoused by neurodiversity.

    "I mean for us to embrace our bodily differences while never forgetting the ways in which the world privileges some bodies and marginalizes others. Bodily difference as neither good nor bad, but as a simple fact of life..."

    Eli Claire, who has cerebral palsy, from his speech "Body Shame, Body Pride: Lessons from the Disability Rights Movement".

    "I believe disability is a cultural identity and don’t feel the need to label myself with a medical diagnosis. Muscular dystrophy/congenital myopathy/or whatever the doctors are arguing 'it' is, these aren’t words I use to describe myself, rather they belong to my doctors and the medical establishment [field or structure]."

    Ms. CripChick's entry for the Anti-Telethon blogswarm, which protests Jerry Lewis's MDA telethon.

    ReplyDelete
  18. Have you seen http://www.gettingthetruthout.org/ ? Maybe you could use that site sometime to make it clear that you're not just talking about high functioning.

    ReplyDelete
  19. This is a very old concept...called conquire and divide(I believe it was used by the original cave people who tried to pit the obsidian spear makers against the flint spear makers so they could get them for less puca shells)

    I don't think there is a group of people who have fought for some respect or services or justice that the people in power have not tried to pit against another group.

    Why do they keep doing it? Because it works. While 100 people fight over a sliver of the pie, the dominate group can eat the other 90% unnoticed and have a bit of entertainment as well.

    sad,sad,sad

    ReplyDelete
  20. IMHO neurodiversity means precisely what it says. A diversity of how we are wired. Not only for inclusion of those who are disabled, but also those who are simply differently abled.

    Two years ago I had a boss that thought I was a "total retard". I do have some shortcomings, but I also have my strengths. Together, I think things work out pretty well. But I don't do fine working for someone who opposes inclusion of those who are "different".

    I now work for a boss that appreciates my differences, approaches and angles, instead of feeling threatened by them. What a difference it makes!

    ReplyDelete

Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]