Dilemmas on the ‘Different’

NORMAL – THAT can be such a loaded term because the opposite seems to be “abnormal.”  But let’s be semantically neutral and look at normal as a statistical label, referring to the majority.  Related words are “norms” and “normative,” which are used to refer to values that the majority of society subscribes to.  We know, though, that the norms can sometimes end up being unjust or oppressive, sometimes by labeling the ones who are different, the ones who are non-conformist, as “abnormal.”

That’s why “special” comes in handy, in the way it challenges social stigma and, going further, has a privileging function.  In the Philippine context, “special” was a term that was quickly accepted because even in our traditionally conformist society, many Filipinos did see “special children” as blessings, as suwerte (good luck).

Yet the concern we see today with “special children” is fairly recent in human history, starting with Western developed countries and spreading slowly to the Third World, including the Philippines. Certain conditions, like Asperger’s syndrome, which is a high-functioning variation of autism where the person has difficulty reading other people’s emotions, was not even identified until the 1950s. Even now most Filipinos – even university professors – have never heard of the term.

But to have reached the point we have today, with programs and even schools for special children, there had to be social and cultural changes.  To start off, let’s take a step back – way, way back several thousands of years:  Whenever I discuss human genetics in my anthropology classes, I always emphasize the importance of diversity in our evolution.

“Where would we be,” I ask my students, “if all of us were genetically similar in terms of physical appearance and personalities?”  I go into extreme hypothetical situations: if we were all extroverted, we would have a really chaotic situation because everyone would be so highly charged, constantly needing attention.  The other extreme would be if we were all introverts, which could mean a very boring world. Yet introverts, their minds constantly at work in solitude, have probably been responsible for many important discoveries and ideas that have revolutionized our lives.

For societies to move forward, we need a mixture of different people.  But while Nature has never been lacking with this diversity, this has also often created problems.  Many societies want conformity, often because this enhances a group’s ability to survive.  Too many individualists and non-conformists in an agricultural society, for example, could mean chaos in a village’s crop production. (Can you imagine a farmer who refuses to plant rice in a rice-growing area, or who insists on having his ricefields, say, kidney-shaped, while all his neighbors have rectangular fields?)

Even as late as a century ago, someone with autism would have had problems surviving in a very conformist society because he or she would not have been able to interact socially, according to the norms.  Those who were too different were probably neglected, with poor chances of surviving into adulthood.  Those with milder autism stood a better chance of survival, but could have been relegated to certain occupations where the introversion might even be seen as a sign of supernatural power. Shamans – people who claimed to be able to communicate with the dead, and with the spirits, and were attributed with healing power – was probably one of the culturally-sanctioned pathways for people who seemed to be different.

Still others could have been marginalized, attached with other labels.  Note the vulnerabilities of people with Asperger’s syndrome, who can be quite tactless in speech, or simply don’t like people.  Add on peculiar body movements, ranging from body posture, to the way of walking, and you can imagine how in a rural area someone with Asperger’s might end up being labeled an aswang.

ELSEWHERE IN the world, however, changes were taking place. In the West, philosophers in the Age of Enlightenment began to challenge social conformity, building what we now refer to as liberalism, which gave importance to the individual, and recognized rights and equal opportunity.

Many people are unaware that it was this liberalism that opened the doors for many social reforms, allowing us to live as we do today – for example, marrying for love rather than marrying someone our family requires us to. The political impact of this new way of thinking was no less dramatic, spurring movements that challenged monarchies and established religion. The United States was the first nation to be established based on liberalism, with its now well-known declaration in its constitution: “All men are created equal. . .with certain unalienable rights. . .of happiness, liberty and the pursuit of happiness.”

Still, the application of these liberal principles took time.  For instance, America’s notion of equal humans didn’t quite apply to black slaves.  Even after the abolition of slavery in 1864, discrimination against blacks continued and it was not until in 2008, 232 years after the U.S. Declaration of Independence, that an African-American was elected president.

These days, discrimination against people who are “different” continues to be a huge problem in the area of public health.  People with certain diseases – HIV/AIDS for example – are still stigmatized, the illness attributed to sexual “immorality.”   Yet, we see, too, how it was in the United States and other liberal Western democracies where patients began to organize.  People with HIV/AIDS are among the most powerful lobbying groups today, successfully getting governments to pay for their treatment, and getting laws passed that would forbid discrimination.

What we are really seeing is diversity, with many battles not with infectious agents, but with social prejudices and biases.   Until fairly recently, homosexuality was considered a disease, listed with other mental disorders, in the American Psychiatric Association’s “bible,” the Diagnostic and Statistical Manual of Mental Disorders or DSM for short.

Homosexuality was eventually removed from DSM in 1974,  partly through a strong caucus of psychiatrists who were themselves gay, and weary of being regarded as having an illness. But the prejudices remain and there are still Christian psychologists and physicians who try to “cure” homosexual patients.

IN THE meantime, there are the “special children,” or those who, says the American Academy of Pediatrics, “have, or are at an increased risk for having, a chronic physical, developmental, behavioral, or emotional condition and who also requires health and related services of a type or amount beyond that required by children generally.”  But the societal shortcut definition for “special” is “different,” which brings with it a whole range of conditions, with many gray areas that even modern science has not quite been able to identify and decode. For all the changes we have gone through, in fact, “special” still hints of the danger of marginalization. For one thing, I’ve always felt uneasy looking at a special child as suwerte, since it seems to reduce the child into an anting-anting (amulet).

Melissa Hincha-Ownsby (autismaspergerssyndrome.suite.101.com) has a good review of how DSM handled the labels around special children.  The first DSM, issued in 1952, did not have autism listed.  Instead, there was a category called “schizophrenic, childhood type.”   The second DSM, issued in 1968, retained this diagnosis of schizophrenia.  It was not until 1980 that DSM had a separate category, “infantile autism,” which was also challenged because of the term “infantile”; this was removed in 1987.

The latest DSM, issued in 1994, has autism listed, as well as Asperger’s disorder, Rett’s disorder, childhood disintegrative disorder and “pervasive developmental disorders, not otherwise specified.”  But a fifth edition of the DSM is now in the works and Asperger’s might disappear, merged into autistic spectrum disorder, a move that is getting mixed reactions.

The names are bound to change again in the future, with many debates.  The terms coined for lay usage become even more complicated because of overlaps.  For example, a person with Asperger’s syndrome is actually considered autistic, but many are able to function in society because they can excel in particular fields.  One good example is Temple Grandin, who was able to get a PhD and wrote the book Animals in Translation, in which she described her work as an animal behavior specialist.  She explains that it was precisely her Asperger’s condition that allowed her to understand animals, in ways that – there’s that word again – “normal” people could not.

We do have many dilemmas trying to develop appropriate social responses.  Let’s look at one part of the spectrum here, the ones we sometimes call “gifted.” Note that many gifted children can also be mildly autistic.  It is not accidental that the nerdy child who has learned to play computer games at the age of three may have difficulties dealing with playmates.

How do we respond?  We look for special schools.  Or, many mainstream schools will have special honor sections for the brightest children, “bright” measured by IQ.  The idea here is that the gifted children get special attention, and can quickly progress rather than wait for “slower” classmates to catch up.

I HAVE mixed feelings about this approach.  I do see value in having some kind of special treatment, but I worry about honor schools and honor sections, in part because I went through that kind of treatment through grade school and high school.  I experienced the pressure to perform, to be the brightest among the brightest, and by the time I was in high school, I decided I had enough, happy to be “mediocre” even if it was still in the honor section.

I knew, too, that students in other sections saw honor section students as “nerds,” or worse: strange, weird.  There was something of a self-fulfilling prophecy here because the more we were labeled as nerds, the more we would stick to ourselves, avoiding athletics and social events, and therefore becoming even more socially clumsy.

When I got to college, I was almost relieved not to have to be in an honor section (even if it was an “honor school”).  Then I met people from Philippine Science High School, and through the years, into my teaching, I’ve become even more convinced that this special-school approach has its risks.  Many burn out by the time they’re in college, bored with algebra since they’ve taken their calculus, with basic chemistry because they’ve had organic and inorganic chemistry.  Even more importantly, they begin to wonder if they’ve missed out socially.  I’ve seen some of them living it up with vengeance, almost as if to make up for lost time, and neglecting academics.

Through the years,  more Filipino parents have begun to pressure children they perceive as brighter, paying for tutors and review classes so the children can get higher grades. The hope is that the children would eventually get into one of the government science high schools and, eventually, into one of the country’s premier universities. The pressure is greater among middle-class parents, anxious about the costs of private college education, and also looking at the bright child as a special investment for the future, the key to social mobility for the family.

And the other special children, the “non-gifted” ones with serious learning disabilities or social interactive skills?   Special schools seem appropriate, but there are educators who also worry of a ghetto effect.  Sometimes, you end up wondering if a child is kept in a special school more because of fears that they will be disruptive in a mainstream school, or that they will be teased and taunted.  They’re all valid concerns, but parents and educators do grapple with the possibilities of mainstreaming, whenever possible.

WHEN WE get back to basics, we go back to my point about liberalism and the recognition of equality among individuals, and their rights.  It has gotten to the point where adult autistics themselves, sometimes with their families, are protesting what they feel is a medicalization of autism, arguing that it should be seen simply as variations on behavior and personalities.  The debates can become quite semantic, such as an insistence on being called “autistics” rather than “people with autism” (because “with” means you have something, like a bug).

A 2004 New York Times article by Amy Harmon has a title that says it all: “How About Not ‘Curing’ Us, Some Autistics are Pleading.” The piece itself describes programs like “Autistic Strength, Purpose and Independence in Education” and activists using “Autistic Liberation Front” buttons and conducting “autreats” (retreats for autistics).  It talks of how autistic activists oppose the way autism is seen as a disorder, arguing that it’s just a matter of having a different kind of brain wiring.  One of their websites is neurodiversity.com, which invokes principles of rights of individuals.

Harmon’s piece does feature parents of autistics who do want special programs – not as a privilege, but because they feel their children will have to learn to adjust to society, rather than the other way around.

I was struck by that article because it came out about the same time a piece on people with Asperger’s Syndrome ran in a more academic publication, the Chronicle of Higher Education, which is meant for educators.  Written by Mikita Brottman, “Nutty Professors” (another title that says it all about the article’s content) describes how in academic institutions, those with Asperger’s are sometimes being hired as part of political correctness, but without considering that they could become problematic.  Intellectual brilliance aside, some of these Asperger’s professors had serious problems dealing with both students and fellow professors.

I could empathize with Brottman, having had to live with such professors as well.  But I do not believe we should exclude them either.  There has to be social mechanisms that can identify children with Asperger’s early in life so that even in mainstream schools, there can be programs to help them to learn to interact socially. Then again, this view is opposed as well by some people with Asperger’s, who see it as a form of discrimination. They point to the example of deaf people who say that hearing people should also adjust to them.  (The film “Children of a Lesser God” played on this theme.)

ULTIMATELY, IT looks like each country will have to deal with these issues, taking local conditions into consideration.  It won’t be easy.  We would have to deal with problems of logistics and resources, fast-tracking the training of educators who can work with special children, using what is available.

We would have to educate the educators in mainstream institutions, who, unaware of special learning issues, might label a “special child” as a “bad student.” Note that the special need may be as “simple” as dyslexia, a quite common condition where alphabet letters are mixed up when the person tries to read them.  This could lead to the student lagging behind in classes, and dropping out.

Previously, I’ve also noted that Asperger individuals might actually be quite bright, but run into trouble because of a lack of social skills.  There’s more though: people with Asperger’s tend to think very literally, and could have problems with subjects that are more intuitive – the arts for example.  Again, a teacher who doesn’t understand this cognitive problem could make life hard for an Asperger student.

There are no easy answers here.  While the Philippines generally emphasizes conformity, we can be quite kind, although patronizing, about children who are different.  Having said that, I also recall meeting an Australian, the epitome of rugged individualism and who would have expected to be tolerant about Asperger’s. But no – his theory was that “some of them” (he was careful) are probably just “arrogant and spoiled.”

The “truth” might be somewhere in between – I think someone who goes through school without Asperger’s being pointed out could turn out to be always on the defensive, wanting to get his or her way, and ending up even more stigmatized.

It’s a long road ahead for parents and educators all over the world.

Dr. Michael L. Tan is a medical anthropologist. He is currently dean of the College of Social Sciences and Philosophy, University of the Philippines Diliman.  He also writes an op-ed column, “Pinoy Kasi,” for the Philippine Daily Inquirer.