Saturday, May 17, 2008

Definitions

Back in March I received an email from a medical student in Canada. In it, she described herself as an "Aspie" - a person diagnosed with Asperger's Syndrome - and she was asking for participation on an ethics project she was working on as part of her medical school curriculum. She had contacted several bloggers who are either on the autism spectrum themselves or have an interest/association with the autism spectrum.

Her project was to collect and analyze congruency among definitions of three terms: Human, Fully Functional, and Normal. Once collected, could the definitions be used to understand differences in perception of autistics from within and without the autism community? I have written about the importance of words before, so this was a concept I could relate to.

I though this was a fair and decent request, so I decided to participate. I have not yet seen any results from her research project, but I hope to soon. Apparently she had asked 20 or more bloggers to participate - did anyone else reading this contribute as well? I would be interested in the definitions you used.

I can be a bit, ahem, long winded at times. Keeping that in mind I did ask the researcher whether there was a framework to stay within in terms of length or type of definition. Their project was designed to take into account any type of response. So here is what I gave as my definitions:

Human
A Human is quite simply each and every member of our species. Incredibly diverse in appearance and behavior, humans are nonetheless of one "family". 'Human' is a word that ought to be devoid of subjectivity, though it most definitely is not so. To be considered "less than human" is typically a label reserved for people who are viewed as being either unconscionably cruel and evil or not able to function in such a way as to be easily viewed as part of the broader 'family'. Either assignation creates contemptibility by its very implication, which is incredibly unfortunate for those who are not evil, yet still considered "less than human".
When considering this definition, I can't help but consider my use of the term 'whole person' in reference to how I feel ASD folks should always be viewed. I realize now that I intend this term to act as a counterpoint to the view that a non-typical human is 'less than human'.

Fully Functional
Whether or not a person is fully functional is far more dependent on the external circumstances, supports, and expectations of successful adaptation than it is within any one individual. Functionality, in other words, is situationally dependent.
A star athlete may excel on the playing field but utterly fail dealing with the pressures of parenthood. Is this person, then, fully functional? A person who is profoundly affected by autism may have difficulty or total inability to wash his/her own hair in the shower, but the same person may be a superior pet owner, whose dog or cat is a paragon of health and happiness. Is this person fully functional?
It is my opinion that none of us, therefore, are fully functional, and that the term itself is the result of a biased position. A more accurate statement that would expose the bias would be 'fully functional as compared to the average performance in any given activity and circumstance'.
An appreciation of what many ASD people need to exert in terms of effort to fit within this preconceived range of "fuunctionality" is merited. The fact that so many are so successful at it does not mean that the definition of 'fully functional' should not be expanded so that more ASD folks can be considered to be 'whole persons' (see definition of Human, above).

Normal
The definition of normal is perhaps the most fluid of the three definitons discussed here, and is entirely dependent on the position of the observer. What is considered to be 'normal' in Zambia is not necessarily so in Chile. What is 'normal' at afternoon tea would not be considered so during a cattle drive in the American West. Age, sex, status, culture, environment, and thousands of other factors all contribute to the subjective view of 'normal'.
However, it is not 'Normal' that makes parents cringe the day of their child's diagnosis of autism. It is, instead, its antonym, 'Abnormal'. Abnormality evokes a far greater response, and it is this automatic response the allows one to understand when something is, indeed, abnormal. I think that where great strides are being made in promoting understanding and acceptance in mainstream society of autistic people is in reassigning the value system that freights with 'abnormality'. For example, when my son, as he did last week, scores in the 99.7% in reading skills, that is definitely 'abnormal'. But not in a bad way.
Interesting to note is that had he been tested strictly versus a hyperlexic population, he probably would have tested - you guessed it - 'Normal'.

7 comments:

Alyric said...

I remember that Steve. My contributions were brief:

Normal: There is no satisfactory definition of normal as a meaningful term. There is not one instance that I can think of where one could point to a trait or action and call it normal and not have someone dispute that. Normal is at best, simply an average and by definition no one is average and therefore no one is normal.


Fully-Functional: At what one would have to ask? Again, no one is fully functional. People are always interdependent to varying degrees. Do you, for example, service your own car, fly your own plane – ad infinitum? Everybody is totally dependent at the beginning of life and frequently at the end of it. For the spectrum, functional is an issue, I believe because what spectrumites can contribute – the ways that they exhibit functionality are unrecognized and unvalued. I do mean unvalued and not undervalued. That is no small irony as society, civilized society that is, would cease to exist without the spectrum. If you can, I would suggest you read Arnold Toynbee who suggests that civilizations begin to falter when the creative minority is replaced by a dominant minority. In crude terms, people skills contribute nothing to the rise of civilizations and are the means of ending them.


Human: You really can’t go past Emmanuel Kant – to be human is to exist. No other value is required. Please note that materialist philosophies, including all practicing behaviorists use a form of utilitarianism, where to be human is to be useful to society in some guise or another.

Steve D said...

Interesting, Alyric, in that your definitions are very similar to mine in their ultimate meaning. I wonder how many other responses follow this pattern.

Bev said...

Hey, Steve! Yeah, I participated in this. I'll send you my response if I can find it.

Ed said...

Steve,

The examples that you and Alyric gave are really good.

These words do describe something very realitive and that is too often not acknowleged.

What we call functional, normal, and human says a lot about our society.I think that if we strive to be human, or the best humans, or just civilized humans who treat other humans humanely, we won't be so blinded to the ways we marginalize and reject people by seeing them as "not normal" or "not functional".

Having lived in several wastelands within what is considered a civilized culture, I see several reasons that the striving to be considered civilized actually contributes to the unraveling of civilization.

When appearing civilized becomes more important than being that way, we choose uncivilized ways to attain and maintain that appearance.

People who have owned fish aquariums know that sometimes a fish that is sick must be quaritined or flushed to preserve the tank.

Farmers of livestock know that there are financial decisions that can make it more important to destroy an animal than keep it.


Are children who name livestock naive? Maybe. But we too often teach kids to unlearn compassion for purposes that serve no one in the long run.

I think that your (Steve) example on how can we place value on the love and care someone has for a pet is a good one. Especially because of the money and effort that is wasted on not finding ways not to kill most would-be pets.

When a parent looks at the desicion as to weather or not to keep a disabled child, it would be unrealistic to think that it wouldn't enter their mind that one day when that child gets older that a public agency staff person isn't going to be extremely unfair and mindlessly predjudiced about their decision of weather that person is a good financial risk for educating and teaching a vocation.

People who are seen as civilized do choose not to educate most (not just some but most) people and train them for a job because of their view to do so would widen the gate (so to speak) and slow down our progress and make us less competitive.

There is a reason that so many people who can show up at public agencies (which most people can't and live in even worse conditions) are often treated with antipsychotics (that everyone knows that the prolonged use of cuts AT LEAST 25 years off their lifespan)and given 12 cents an hour instead of being educated and trained for a job. That's a world view that affects or is affected by more isolated regions and the views of those regions. (The antipsychotics are more of an American thing. It justifies and feeds the American pharmasuetical industry.)

Private and public people and agencies are guilty of ignoring the needs of the majority of people. Some aren't. There needs to be more that aren't.

I wish that economic recessions and depressions brought out the best rather than the worst in people but for that to become true, some views of humanity must change.

We also need to look at the impact our decisions have on people who have never been seen as worthy of being considered a part of any statistic.

The definitions of functional and normal are realitive at best. If the ways that these things are being described by so many are what is defining us as civilized humans, we need to strive to be better than civilized humans.

Steve D said...

Excellent comment, Ed. You make some very profound points - I see that this is an issue you take very seriously.

abfh said...

I answered very briefly, with links to posts that I had written discussing each of these terms. In short:

(1) Human. Anyone who doesn't define the term to include our entire species is a bigot of the worst sort.

(2) Fully functional. This is, of course, a value judgment derived from society's expectations regarding how a person or group should function. While the term may occasionally be useful in discussing a well-defined ability (such as the one referred to by Cmdr. Data in the infamous Star Trek episode The Naked Now) I don't believe that functioning labels should ever be used to describe a person generally.

(3) Normal. This word has several meanings. I believe that it ought to be used in a neutral way, to refer to specific statistical averages without connoting a more desirable state of being. Unfortunately, the word is more often used by a social elite to describe itself, in a modern-day caste system that is arbitrarily divided into "normal" and "abnormal" people.

Jannalou said...

I did that one, too.

Here's what I wrote:

Normal: Normal is, in a way, something that does not exist. I mean that normality may be something people aspire to, but is not something that is achievable, because nobody is normal. At the same time, there is such a thing as something that is normal for a specific individual. But that's not what is generally meant by the word. When I use the word normal, I try to keep to the latter definition - what is normal for myself or the person I am talking about - because I feel so strongly about the lack of normalcy in general.

Human: Human is a fairly fluid kind of thing for me, as well; my pets are my children, and that endows them with some degree of humanity in my eyes. A person is a person is a person, really. I don't see differences or a need to treat people as "less than" simply because they lack some random skill that someone somewhere decided was a hallmark of humanity. Animals and humans have the ability to communicate in some way; some ways are simply easier to understand than others. Animals and humans have the ability to think, reason, learn, and solve problems. Animals and humans have the same kinds of needs and desires, though I suppose it's the human desire for self-actualization that really sets humanity apart from other life forms. But, yeah, "animals are people too".

Fully-functional: A person is fully functional if they are functioning to the best of their ability. Sometimes there are blocks that cause parts of their functioning to fail (things like executive dysfunction and inertia, for example); if they usually are able to function in that area, but are currently experiencing difficulty with that operation, then they are not fully-functional. In my definition of this term, a person who is born a paraplegic is fully-functional if xye learns to use alternative forms of ambulation, such as the use of a wheelchair, and develops all other areas of xyr life to the best of xyr ability.