Whose Planet Is It Anyway?

Saturday, March 29, 2008

Taking Care with Assumptions

In recent years, parents worldwide have been advocating for better services for their autistic children. Society has no understanding of my child's needs, they say. He will always need services as he goes through life. What will become of him after I am dead? Who will take care of him?

There's no doubt that the structure of present-day society is woefully inadequate to meet the needs of the autistic population. Still, when it's assumed that the solution consists entirely of arranging for more government-provided services to take care of autistic people, this assumption—although well intentioned—falls short of addressing the core issue. When we have a major structural problem in our society, as we do, it needs to be dealt with through radical structural change.

Parents should not have to worry about finding care for an autistic child throughout his or her lifespan. Instead, they should simply be able to take for granted—as they would with any other child—that he or she will have access to a reliable means of communication, a good education that builds on his or her strengths, equal employment opportunity in a job market that values everyone's skills, and living arrangements that are appropriate to his or her individual needs and preferences.

Having a difference or disability should not automatically equate to being a passive recipient of caretaking services forever, without any meaningful choices. Yes, autistic people need some assistance in daily life; but then, so does everyone else on the planet. We need other people's services to build and furnish and heat and power our homes, to grow and process and package our food, to weave our fabrics and sew our clothing. Nobody is truly independent. Our society takes care of all of us, in a vast multitude of ways.

If we resolved to make a collective effort to ensure that all autistics (and others with disability labels) could get a decent education and would not face discrimination in the workplace, I expect we would soon discover that most would be able to work and pay taxes and buy whatever products and services they needed. Social service agencies would then have ample funds available to help those who, for whatever reasons, could not earn sufficient wages to provide for their needs. Under this paradigm, services would be based not on diagnostic labels, but on individualized need assessments. Competence and self-determination would be assumed, rather than disorder and dependency. People would be empowered to take care of themselves.

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16 Comments:

  • Seems to me that society progressively thinks more backwards --- as in thinking that the symptom is the cause and/or the cause is the symptom.

    Who'd think that just maybe autistic children could be anti-social because they sense early on that others feel as if they're defective? . . . these others might be unconsciously giving off the message to these children that he or she isn't acceptable as is.

    By Anonymous Sheila, at 1:12 PM  

  • I too think we are going backwards, but in a different way. In the past, autistic people found work niches in agrarian and manufacturing economies. On the farm next to the one where I grew up, for example, there was a guy in his 50s who couldn't talk much and was considered extremely simple (although he could take complex machinery apart and put it back together again). He did manual labor and, if I remember rightly, slept in the barn most of the time. I remember that he had a lot of money in the bank that was used to pay for some sort of residential facility when the farmer who owned the farm died. He always seemed happy enough to me. He could really hit a baseball, though I am not sure he knew all the rules of the game. He like to walk great distances and would appear out of fields miles away from the farm. So there's a guy with a productive, relatively speaking independent life, who was accepted and as happy as anyone else (it seemed) within the broader community. But it is a whole lot harder to imagine a life like this nowadays. And one of the reasons is that various state agencies would feel the need to intervene.

    By Blogger VAB, at 2:47 PM  

  • I like the idea that no one is truly indepedant. Independance/dependance is based on how what people provide is valued.

    Finacial dependance cant be judged in society that differently than how it is in individual families. It doesn't make sense for a family to describe a child as dependant when all of thier time, energy, and money is spent on everything else they see as important instead of providing for their child's future. The U.S. government anyway has done the same in showing where their priorities are.

    Change has to include meeting people where they are and using the resourses we have available on what is important before desciding that anyone is consuming unnecesary funding.

    The U.S. expects 18 year olds who are seen as having disabilities to enter a vocational "rehab" program if they are seen to have "fallen through the cracks" of the education system. The responsibility then gets put on the person before the "crack" of the SAME system gets sealed.

    As long as these cracks go unsealed, voc. rehab is every bit of a commercial bussiness as all other employment agencies, and the expectatations of jumping the fence from dependence to independence is unrealistic for so many people, those who are seen as dependant are not a weight on society but rather they are carring the burden of societies ills that society has not yet been willing to even acknowlege.

    By Blogger Ed, at 3:39 PM  

  • I'm with VAB.

    Once it was clear that Buddy Boy was "different", I fought tagging him with a diagnosis. A good part of the reason was that I did not perceive him getting a formal diagnosis as doing him any good. I felt that he would be stigmatized and sidelined. It was only when it became clear that he would not be able to get any accomodations at school without a diagnosis that I accepted, then embraced, his getting a diagnosis (I have also come to see him having a diagnosis as a postitive thing for his own self identity as he grows).

    In a perfect society, common sense and common decency would rule the day. Unfortunately neither is common. As VAB says, in years past in agrarian societies (and in some communities today like the Amish, I suppose) people were allowed to find their niche, and were assisted as necessary to find a niche. We insist (in modern society) on everyone and everything being categorized and labeled. This is not a good thing, IMO.

    Joe

    By Blogger Club 166, at 6:50 PM  

  • When I seek out services for my adult son, it's all about getting him SSI- getting him food stamps-etc. Nothing about helping him learn, supporting him in a decent job that would use his abilities, helping him be independent and make his own living- which I think he could do, with support. But there is no support, except me, and I'm just not enough for him. In the long run, all society would benefit from using his talents! But so far, it's very frustrating because there is no place for his "square peg", and the services available are not only inadequate but seem to be designed to keep him independent.

    By Anonymous Nancy, at 9:38 PM  

  • Edit of last comment- must have been wishful thinking on my part. All the services seem to be designed to keep him dependent- I wish they would help him to be independent!

    By Anonymous Nancy, at 9:40 PM  

  • What kind of job can we find for Amanda Baggs? I got it. We could stick some fans in her hands that she keeps flapping when there are cameras around and she could sit in front of football benches to cool off the players.

    Do you think that would be better than having sit on her ass all day typing propaganda on her computer?

    By Blogger Foresam, at 2:07 PM  

  • But even the military can't find a job for JBJr, can it?

    Says a lot.

    By Blogger David N. Andrews MEd (Distinction), at 2:49 PM  

  • Dave, Haven't heard from you for awhile. Are you still doing Ian Anderson impersonations with your guitar?

    By Blogger Foresam, at 3:43 PM  

  • Foresam, I think you're just jealous because nobody wants to interview your sorry butt or read your propaganda. Sucks to be you, buddy.

    To all who commented on the backwards-thinking social service agencies: I agree. Ronald Reagan once said that some of the scariest words in the English language are "I'm from the government, and I'm here to help you." Unfortunately, there was some truth to it.

    By Blogger abfh, at 6:15 PM  

  • I write truth to counter the propaganda from Hub of Phoney Autistics.

    By Blogger Foresam, at 7:47 PM  

  • I never did... that bugger always tried to impersonate me.

    Was never any good though.

    By Blogger David N. Andrews MEd (Distinction), at 9:34 PM  

  • Another very well-written post............abfh.......

    Foresam: what proof do you have that Amanda and others are phonies?

    Oh wait......that would require too much thinking to even figure out that there isn't any, wouldn't it?

    Yeah I agree, sucks to be you. If I were that pathetic I just might hang myself.

    hi there David...I've visited a few blogs you reply on.......how are you?

    laters....

    Athena of athenivanidx

    By OpenID athenivanidx, at 11:51 AM  

  • "Foresam: what proof do you have that Amanda and others are phonies?"

    He has absolutely none.

    "Oh wait......that would require too much thinking to even figure out that there isn't any, wouldn't it?"

    Indeed.

    "Yeah I agree, sucks to be you. If I were that pathetic I just might hang myself."

    I should find that offensive as one who was hanged by people, but since they were the sort that JBJr is, I agree entirely...

    "hi there David...I've visited a few blogs you reply on.......how are you?"

    I'm alright, thanks.... beter when the JBJr-type of this world are eliminated from the gene pool...

    By Blogger David N. Andrews MEd (Distinction), at 6:11 PM  

  • I'm alright, thanks.... beter when the JBJr-type of this world are eliminated from the gene pool...

    ha.........me too. what kind of bug is up his arse anyway?

    What makes him think he's so f***ing important that he has to chip in every single time? All he does is spew nonsense..........

    John BEST? Yeah right. More like John Worstfreakingidiot..........well, that might be a stretch, there are, believe it or not, idiots that are worse than him because they have actual power over a whole lot of people.........

    apologies for the hanging comment. Did you mean figuratively hung by people?

    The Integral of athenivanidx

    collective blog of three personalities

    Athena, The Integral, and Ivan

    By OpenID athenivanidx, at 10:02 AM  

  • "apologies for the hanging comment. Did you mean figuratively hung by people? "

    no need. and no, this was literal. but don't worry... like i said, i should be offended by it... but i really am not. guess the bastards didn't grind me down after all :)

    "ha.........me too. what kind of bug is up his arse anyway?"

    i know an entomologist who might be able to hazard a guess ;)

    "What makes him think he's so f***ing important that he has to chip in every single time?"

    a borderline personality with narcisistic features, maybe.

    "All he does is spew nonsense.........."

    :D

    you got him pegged :D

    By Blogger David N. Andrews MEd (Distinction), at 7:23 PM  

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