Saturday, April 3, 2010

From Dissed to Specialist

Terms such as disabled and disability, while less offensive than some other words such as crippled or retarded, are themselves sometimes criticized as essentially dissing those individuals that the labels are being applied to.  In the case of autism, the term disorder has also been applied, and has also been criticized as a form of dissing.  (This came up in the post I put up about three years ago, Autism and Advocacy.)

General semantics, which has made very significant contributions to combating the use of stereotypes, prejudice, and scapegoating, helps us to understand the problem.  Put a label on someone, and we start to react and respond to the label, and not the person as an unique individual.  At worst, we only see them, and know them, as their label. At best, the label stands as a barrier that makes it harder to see the person as an individual than would otherwise be the case.

This is the problem of identification, which is why general semanticists emphasize what ought to be obvious but all too often is not:  that the label is not the person.  You can put me in a category, for example, you can say that I'm in the racial category referred to as White, but that doesn't necessarily mean that all of the characteristics associated with that category apply to me (like maybe I can jump, or at least used to be able to when I was younger).  Whatever those characteristics may be, they are a result of generalizing and averaging out of traits, and even if they are true of a majority of members of the class, they are not true of them all.

As much as I may not be all that the category suggests that I am, I am much more than the category itself.  The label does not say all there is to say about me, which is the problem that general semanticists refer to as non-allness.  For one, there are other categories that I also fit into, such as American, New Yorker, Jewish, male, intellectual, liberal, college professor, only child, husband, father, driver, overweight, middle aged, blogger, media ecologist, and of course general semanticist.  And there are aspects of me that, arguably, do not fall into any category, that are unique to me as an individual.

By the way, if you are in the United States right now, you have no doubt received a census form, and hopefully have filled yours out and returned it already.  The census is an exercise in categorization, forcing us to label and stereotype ourselves for the sake of government bureaucracy, which is a technology of control.  I hasten to add that control is not necessarily a bad thing, as government services require a measure of control to be carried out.  Control is what cybernetic systems are all about, Norbert Wiener coined the term cybernetics as a the science of control, control being based on feedback which gives systems their interactivity, and the root term kyber, which means steersman, is also the root of govern.

So the label disability is one that is attached to certain individuals as a form of legal status, Americans with disability, and it is a legal distinction rather than an absolute one.  For example, someone who is legally blind may still be able to see, but so poorly as to make vision problematic (something like 20/200 vision that can't be helped by glasses or contacts is the cutoff point).  So, some folks who are not categorized as disabled may still have certain disabilities, and you might say that everyone is disabled in some way, so that it's not a matter of either-or, what general semanticists know as the problem of a two-valued orientation, but rather a matter of degree, the degree to which one's disabilities impede our functioning and require some extra assistance.

On the politically correct front, sometimes the word challenged is used as an euphemism, as in physically challenged and mentally challenged.  These terms are very general, though, and therefore invite a broader form of stereotyping.  And they can be problematic.  I noted in my last post, Autism Awareness at Adas Emuno, that the use of "mentally challenged" in reference to autism is inappropriate.  It is not only a gross oversimplification, and misses many of the characteristics that are related to social interaction and sensory issues, but it also does not apply to a significant number of individuals on the autism spectrum who are well above average cognitively.

So, we come to the politically correct term, differently-abled, which has often been derided for its own euphemistic quality, for trying to gloss over the fact that some individuals function better than others in society, and some do not function well at all, at least not without significant assistance.  And even if you realize that we all have some forms of disability, and we all have some things that we are particularly good at, there is an awkwardness to the sound of the phrase differently-abled that I find hard to deny.

But maybe, maybe, if we start to talk about people as differing in their abilities and disabilities, much as Howard Gardner talks about different kinds of intelligences, then maybe we will begin to shape a society where people can take advantage of their gifts, while compensating for their deficits.  Maybe we can create the different kinds of situations that different kinds of people need to thrive, rather than requiring every individual to fit within the same type of situation, and saying that there's something wrong with them if they can't.

If we change our way of thinking, that may lead to a change in the way that we do things, and here is an example of just that sort of thing, courtesy of an ABC World News report produced by a parent of one of the students at my daughter's school:




There is a written report that accompanies the video, entitled Software Company Only Hires People who Have Autism, subtitled "A Thriving Denmark-Based Software Company Only Hires People With Autism," dated April 1, 2010, and credited to John Donvan, Caren Zucker, and Michael Murray.  It starts off like this:

At first glance, Specilisterne looks just like any other thriving software company. However, these colleagues had to meet a certain job requirement in order to get hired -- they must have autism.


"I could only work in a supermarket before," employee Hille – who has high-functioning autism called Asperger Syndrome – told us.


Specilisterne means "Specialists," and they test software. It is a tedious click by click process where most of us would lose focus and make mistakes. 

Specialization is something media ecologists associate with literacy and typography, and mechanical technology.  It is also characteristic of autistic intelligence, of what has been referred to as "isolated islands of ability," and of savant skills in one highly specialized area.  And given the social deficits common among individuals with autism, they often find working with computers to be a comfortable option, whether it's programming, data entry, or in this case, software testing.  The report goes on to note the deficits related to focus and socializing, and the strengths related to memory, orientation to details, and persistence (or perseverance):
 
The workers at the Denmark-based company share many of the same life experiences. Many were told they were unemployable, that they were too disabled to focus professionally. The social side of office life also eluded them, they were incapable of joining in with the lunchtime crowd.




Mads, another employee at Specilisterne, told ABC News he hadn't been able to keep a job in 20 years before landing his current job. He told us, "Most of my colleagues are like me … we have in common to be weird."


Thorkill Sonne, who founded Specilisterne in Copenhagen, believes that everyone does not have to fit in socially-accepted little boxes. He means to change the nature of that box completely. He is turning disability on its head, hiring his employees because of their ability. Sonne says workers with high-functioning autism have different brain wiring that gives them an edge.


Sonne told ABC News, "they have a good memory, they have very strong attention to details, they are persistent … within their area of motivation and they follow instructions."

Sometimes, that willingness to follow instructions is criticized for its rigidity, even for coming across as robotic, but here individuals with autism are placed in a situation where that is an advantage rather than a problem.  But what is the motivation for going to this extra effort on their behalf?  Perhaps it's capitalism, taking advantage of an available workforce.  Is that taking advantage of individuals who find themselves at a disadvantage?  Or is it creating an opportunity for all concerned?  And is there a further motive of concern at work here?  Read on:


But this is not a charity; employees need to turn a profit to remain employed. Sonne believes you need to please your customers with a service or you are out of business.


He says his primary goal is to make profits to show the world that it can be done with employees like his. He has a personal motivation for accomplishing it -- his son, Lars. Lars, his father's inspiration, has autism and gifts like drawing and a great memory. Sonne hopes the existence of companies like his might avoid Lars years of unemployment, like Mads.




Mads says he likes the job he has now, and that "here, I'm treated like a normal."


Sonne says, "that's really what I hope and foresee for my son as well -- it can be done."


So, this would be an example of capitalism with a social conscience, of social responsibility in business, of social entrepreneurship.  And it deserves the visibility that ABC News has given it.  The epidemic of childhood autism is leading to a flood of adult autism, and we have made no provisions for what such adults will do with themselves after they age out of schooling, after they turn 21.  This special company, Specilisterne, shows us that there is a solution to this problem, one that can allow individuals with different abilities and disabilities to be placed in a situation where they can be content, productive, contributing members of society, a resource rather than a burden.  From labels to individuals, from dissed to specialist, that is steering in the right direction.


4 comments:

Ben said...

Lance,

This kind of topic is of high interest to me and has been for a very long time. It is a topic on which general semantics has extremely helpful perspective and I want to make that perspective better understood and known, esp. in light of the forthcoming release of the DSM-V.

I have a number of friends diagnosed with "mental illnesses." In particular, friends of mine have been diagnosed with bipolar disorder and borderline personality disorder. I have also had my share of acquaintance with people diagnosed with obsessive-compulsive disorder, too.

I make a general semantics point with these people. Take the bipolar crowd. They tend to say "I am bipolar" or "I have bipolar disorder." I react to their statements by pointing out that since there is no specific genetic test determining these factors, it is more descriptive, acccurate, and probably proper to say "I've been diagnosed with bipolar disorder." That calls attention to the process involved: 1) Someone else, 2) called you, 3) "bipolar."

It is a bit hard getting these people to see the importance of the distinction immediately, but with persistence and serving a bit as an example, I tend to make some headway in forwarding the perspective and changing the person's mindset about her condition. What's the value of the perspective? Well, it removes a bit of delusion the person has that further complicates her life. She tends to believe she "has" something that hasn't actually been found; instead, it's just been diagnosed--that is, named.

These kinds of diagnoses tend to shake people to the core. It has the capability in some people to become their identity. "I'm bipolar." While some people say it makes matters better for them because it opens up treatment options, this is hardly always the case, and in a number of cases, the diagnosis makes matters work as it diminishes self-esteem and invites the problems that come with that reduction, even relatively terminalizing the condition the person is in to the point they don't believe they can get better.

But as you say in your post about yourself, so are these people: They're many more than just a single diagnosis that refers to a set of observed behaviors. There are other behaviors that are left out (abstracted away) when a person is diagnosed.

continued...

Ben said...

continued...

But as you say in your post about yourself, so are these people: They're many more than just a single diagnosis that refers to a set of observed behaviors. There are other behaviors that are left out (abstracted away) when a person is diagnosed.

I want to call attention to a few ways to address those who have been stigmatized by labels. Note that the title of the article says "People with Autism." That phrase doesn't seem to me to carry much stigma; instead, it seems to suggest a special perspective the person has. Compare with "People with supertasting ability," "People with big brains," "People with colorblindness," "People with bipolar disorder," "People with no time on their hands," etc. The "People with ___" phraseology may be an approach to talking about these people that a) regards them as HUMANS first, then b) notes one special, individuating trait about these humans. The phraseology has the ability to spell respect for people rather than disregard their unique perspectives.

Lastly, I'd like to note that the word "disorder" is a relative term. It is relative to a particular goal, and if you change the goal the person has, it can become improper to refer to behavior-described as "a disorder." "Disorder" might be defined as "behavior that stubbornly interferes with the accomplishment of a goal." But that stubborn behavior may actually aid the person in accomplishing a different goal. Take the artist who can make a living off of art inspired by her emotional life; is it "a disorder" to have depression if that is the inspiration for artwork that provides that person a living? If medication or behavioral therapy takes away that person's depression and that person's living, wouldn't it be more proper to say that the new non-depressive state is more of "a disorder"?

Indeed, it's important to note the legal aspect of diagnosis, as well as the insurance aspect. But qualifying any diagnosis as legal ("legally blind") helps in making a distinction between map and territory, status and actual ability. Leaving out the qualification potentially spells out a delusion about the person's abilities. That is, if I referred to someone as blind who is more properly legally blind, I delude others into thinking the person has absolutely no ability to see when in fact he may have some ability.

Some thoughts. I appreciate your publishing this comment and providing further perspective.

-Ben
http://benhauck.com/offthemap

Matt Thomas said...

This post made me think of two things.

First, disability scholars and activists tend to prefer terms like "people with disabilities" over terms like "disabled people" because they work to shift the locus of the impairment from within people to the external world, e.g., the built environment. In other words, the problem isn't that there's something wrong with them so much as it is that the world is designed in such a way that makes their impairment a disability. Disability is thus something that's always contextual. No doubt you're already familiar with this line of thinking, but I bring it up because it strikes me as a very media ecological perspective, actually.

Second, are you familiar with Tyler Cowen's book Build Your Own Economy? Cowen has some interesting things to say about autism and information technologies.

Lance Strate said...

Thanks for sharing your thoughts and reactions, Ben and Matt, they certainly complement my post.

And Matt, no I never heard of that book, but I will be sure to check it out, thanks for bringing it to my attention.