Arthur Caplan's Rhetorical Plague

When I started reading this article on MSNBC.com, I saw the byline of a respected bioethics contributor and thought that I would find a well-written article detailing Andrew Wakefield's many ethical shortcomings. As I expected, the article focused on the widespread fear of vaccines caused in large part by Wakefield's false claims, as well as the "immeasurable harm" done to children by maladies that could have been prevented.

I also found something that I was not expecting to find from an author who certainly should have known better: Language characterizing autism in melodramatic and grossly inaccurate terms such as "dread disease," "epidemic," and "plague."

Given the fact that Arthur Caplan previously has written articles cautioning against eugenics and pointing out the contributions of autistic people to society, I do not interpret this language to mean that he literally views our existence as a plague or that he has an actual dread of us. Rather, I think that he might have been using the language in a rhetorical fashion to illustrate the extent of the parents' fears. That would have been fine if he had put it into the proper context, such as by stating that the exaggerated media coverage of autism caused many parents to think in such terms. But instead, he used broad, unqualified language that gave the misleading impression he was describing facts.

In recent years, as Caplan ought to know, immeasurable harm has been done to autistic people by careless journalism that encourages the public to dread us like the plague. Autistic children are being excluded from schools or put into segregated classrooms in ever-increasing numbers. Job applicants and employees often face discrimination in the workplace because they look autistic. Bullying and abuse are rampant, while the victims get the blame for not being sufficiently normal to make friends with their tormentors.

A correction of the article and a prompt apology to the autistic community are needed. Arthur Caplan can be contacted at the following address:

caplan@mail.med.upenn.edu

Can you relate?

I've mentioned before that one of the advantages of the Internet is its diversity, which has the salutary effect of correcting misconceptions and prejudiced statements almost as soon as they occur. When someone posts biased or incorrect information about a group of people, it's highly likely that one or more readers will set the record straight.

But sometimes such comments can get rather incongruous. In response to my last two posts, a few people seemed to think (1) that I might be prejudiced against poor whites, Southern whites, and/or hillbillies because I used dialect in describing small-town ignorant attitudes, and (2) regarding my discussion of the Ghost Dance of 1890, that I shouldn't make historical analogies that suggest it is possible for the average person to relate to anybody except whites.

Oy.

I don't disagree with the general observation that a person cannot fully relate to the lives of those who belong to a different nationality, race, time period, and so forth. However, it's also not possible to fully relate to the perspective of the guy who lives down the block. The range of human experience is vast. I believe that it is not only appropriate, but essential, to try to broaden our understanding of how our lives relate to those of others, even though such efforts will always fall short. When we identify ourselves primarily with one group (whether it is defined in terms of race or anything else) and assume that we cannot relate to anyone outside the group, our lives become much the poorer for it.

I'll give you an illustration of where such assumptions can lead. This is a true story, unfortunately. I have an older relative who lives in a part of the city that is no longer safe. There are frequent drug deals and people getting shot at the corner gas station. He won't even consider leaving the area, however, because he only feels comfortable in an all-black neighborhood. If he moved somewhere else, he might have white neighbors; and he is firmly convinced that he can't relate to white people and that it is dangerous to even try. He has on occasion lectured younger family members that they must never socialize with white co-workers after hours because it might just be a ploy to lure them to some isolated area and lynch them. The Internet is never going to change his views because he is highly unlikely to visit any websites that might challenge his prejudices.

When I blog (and in other areas of life too), I try to keep in mind that whatever assumptions I make about other people are likely to be wrong. Of course, any interaction with or discussion of others must necessarily involve making assumptions of one sort or another, given the fact that there's no way to know everything that might be part of another person's thoughts and experiences. As we go through life, we constantly adjust and recalculate our assumptions; but they never disappear entirely, no matter how well we may think we know another person.

To be clear, the previous sentence refers to people in general, not just to autistics. I don't believe that the need to adjust one's assumptions is unique to autistics or that there is some sort of magical social superpower enabling non-autistics to read minds. People may be more accurate in making assumptions about those who have neurological traits similar to their own; but that also can be said about people of the same gender, nationality, or any other subset of human experience.

The extent to which it is possible to relate to others always depends on a great variety of circumstances, some of them changing from one moment to the next. And it is by necessity an imperfect process, full of misunderstandings. As we begin a new decade, however, I am hopeful that the personal connections created by blogging and the Internet will lead to more awareness of social assumptions and more vigilance in correcting them, while recognizing that there will always be more to learn.

Ghost Dance

The Native American tribes of the Northern Plains, forced onto reservations and near starving in 1890, were drawn in large numbers to a new religion called the Ghost Dance. Led by the shaman Wovoka, this mystical cult sought through ritual dancing to bring about a magical restoration of the world that they once had known. If they performed the dance with a pure heart, Wovoka assured them, it would bring their ancestors' ghosts back to life and bring the great herds of buffalo back to the plains.

The Ghost Dance soon lost its popularity with the tribes when no restoration happened. The buffalo remained on the verge of extinction for many years, and the families on the reservations continued to live in poverty. The tribes lost much of their history and culture when large numbers of children were taken away to boarding schools to learn English and to become assimilated into an America where their skin color would always mark them as second-class citizens.

Now, over a century later, the world we live in bears little resemblance to the one that the Ghost Dance believers sought to restore. Buffalo herds are no longer a rare sight, thanks to bison conservation efforts and commercial ranching, but they no longer have the cultural significance that they had when the tribes relied on hunting for survival. And while a modern lifestyle of burgers and fries, pickup trucks, paychecks and mortgages does indeed have some advantages in that most people nowadays don't have to hunt anything to put food on the table, it also has its constraints. In today's world, we almost never look out over wide-open landscapes, breathe in the magic of a new day and feel confident that the Earth will provide for our needs. We just stop at the local burger joint for a take-out meal.

Sometimes I feel like a ghost blogger, sending forth my words to dance on glowing screens in the hope of restoring a world that has been altered irrevocably. When I write about autistic people and our way of life, I have in mind a social minority culture that existed long before today's labels and diagnostic categories. This culture, the one in which I grew up, strongly encouraged a love of learning and of the natural world. Passionate interests were often discussed at length, not stigmatized as symptoms of an unfortunate disorder. Like the tribespeople when the buffalo still roamed the plains, we felt an almost mystical confidence that there would be a place for us in the world.

This is not, however, the existence that many of our young people know. Like the conquered tribes struggling to survive on the reservations, their natural way of life has been taken from them, forcibly suppressed and branded inferior. Many autistic students attend segregated schools where, like the Native American children in the boarding schools, they are taught that they must change almost everything about themselves before the majority population will grudgingly tolerate their presence.

At some point in the future, mainstream society's greater awareness of autistic differences can be expected to have more positive outcomes. Schools and workplaces will adapt to accommodate our needs. As with other minority groups, our diversity will be accepted and our contributions to society valued. Our right to self-determination will be protected. Our culture and way of life will be recognized as legitimate.

And yet, when this happens, we will no longer be the same people.


Crossposted to Shift Journal.

Good Ol' Boys

This town's for normal folks, see. You know, the good folks that look and sound and act just like the rest of us. Them others what ain't normal, or got kids what ain't normal, well—they don't none of 'em belong in this town. Let 'em keep to their own kind. And one thing's for sure, they ain't got no business putting their brats in our schools, right next to proper-acting kids. Fact is, them what ain't normal just need a good beatin' to teach 'em their place.

'Course, we know they ain't never gonna be normal, however much we beat tar outta 'em. See, they ain't really human like us. But we just like to whup on 'em anyway, 'cause it's fun, and maybe if we do it enough we'll finally beat some sense into their thick ree-tard skulls and run 'em outta town.

Just now heard tell there's some agitatin' in Congress about seclusion and restraint in the schools. Seems we got us some damn fools who think it's cruel to lock ree-tards in broom closets or duct tape 'em to chairs. They even set up a National Call-In Day to do more agitatin' about it. Hoo-ee, ain't they ever gonna stop yappin' about civil rights and interferin' with the way regular folks do things? It was bad enough when we had to let the Nee-groes into our schools, and of course they started gettin' too friendly with our daughters, and now we got us a moo-latto in the White House. Country's goin' to hell in a handbasket, I tell you. Ain't no wonder we got troublemakers as want to be nice to ree-tards.

Don't let 'em fool you with all their agitatin' about civil rights. You know, that's just a code word for the Satan-worshiping commie Illuminati conspiracy to set up a world government, take away all our guns, and burn all our Bibles. Well, I got plenty guns in the cellar, and even a Bible down there somewhere under all the ammo, and anyone fool enough to come for my guns is gonna be pure-dee daid. Got me a rope for any ree-tard what tries to get too friendly with my daughter, too, and a big ol' tree picked out to hang him from.

Now, if any good normal folks want to find me before the Klan meetin' tonight, I'll be out on the lake fishin' with a bottle of Jim Beam…

Behavior and Respect

Just read an interesting post by Mark Stairwalt about the management of workers in fields such as information technology and library cataloguing, where an autistic cognitive style is prominent. He cites a Computerworld article by Jeff Ello, which points out that among such employees, a workplace culture has developed that places much more value on getting the job done accurately than on social pleasantries. Others who lack understanding of this culture often stereotype the workers in terms similar to those often applied to autistic people, calling them egocentric, antisocial, and so forth. Such behaviors, however, are usually a reaction to incompetence in the organization. When managers take the time to learn what kinds of internal procedures and structures make the work flow smoothly, they are likely to find that their employees are much easier to manage. In the same way, those who describe autistics in terms of stereotyped behavior problems lack understanding and respect, which gives rise to many frustrated reactions that would not otherwise have occurred. As stated by Dr. Morton Ann Gernsbacher, reciprocity needs to be mutual and symmetrical.

To elaborate further on this point, although social skills often are defined to mean the set of scripted behaviors preferred by the majority, that's really not what genuine social competence is about at all. Rather, a socially competent person is one who understands that there are many different subcultures with their own social preferences, and who makes a respectful effort to understand those differences and to interact with others in ways that they prefer. Instead of sending autistic people to social skills workshops to learn how to behave as if they were not autistic, we ought to be sending everyone to cultural competence workshops to learn that they shouldn't expect everyone to behave the same way. We've learned this lesson, for the most part, with ethnic minorities; it's time to apply the same principles of respect and inclusion to neurological minorities as well.

A particularly egregious example of what happens when autistic people are stereotyped as nothing but a collection of behavioral deficits can be found in the case of Zakhqurey Price, an 11-year-old boy who has been charged with felony assault based on resisting restraint at school. ASAN has created an action alert describing what you can do to help protect this boy's rights—a concerted effort by our community is needed here, so please take action.

Autism Speaks Loses UK Affiliate

Hat tip to Socrates at The New Republic.

This latest misadventure of Autism Speaks has demonstrated, yet again, arrogance and ineptitude on a truly epic scale. When Autism Speaks finally ends up in the history books (where, less than four years ago, it declared its intent to put the world's entire autistic population), the tale of its demise will be one of hubris befitting a classical Greek tragedy.

To briefly sum up the debacle, before releasing the I Am Autism video in September to widespread condemnation from disability rights groups, Autism Speaks had presented its text as a "poem" at a May meeting with British supporters in London, where it was received with about as much enthusiasm as a heap of decomposing Thames flotsam. After that, having apparently concluded that it didn't matter what the Brits thought and that no propaganda was too extreme for the United States, Autism Speaks went ahead and created the video anyway. Not only did it suffer a major media embarrassment as a result, it also lost an international affiliate, as the UK nonprofit group that had been a branch of Autism Speaks has now formally cut its ties with its former parent organization and has renamed itself Autistica.

Although the newly renamed group seems to be just as interested in genetic research as the old one, it seems to have at least enough sense not to openly advocate eugenics. Its mission statement describes its purpose as follows:


Autistica seeks to use biomedical research to bring benefits to individuals and families affected by autism spectrum disorders.

Autistica is dedicated to raising and investing funds to support high-quality peer reviewed research which focuses on determining the causes and biological basis of autism spectrum disorders; improving diagnosis; and advancing and evaluating new treatments and interventions. We are committed to ensuring that increased understanding and new scientific knowledge will improve the quality of life for all those affected.

Autism is one of the most significant but least researched developmental disorders and Autistica has set itself the task of achieving major breakthroughs within ten years.


Nothing in there about prevention, eradication, prenatal screening, or putting autistic people in the history books. Fancy that.

Culture and Happiness

I've been reading an interesting discussion on the blog A Grand Illusion, which began by asking what's wrong with wanting a cure if someone feels that they can't do what they want to do because of their autism. A commenter posted a snarky reply along the lines of "get over yourself, there are plenty of starving peasants living in huts who are much worse off than you." By way of rebuttal, the next few posts had to do with indigenous cultures and how happiness is perceived in different places across the world. Global surveys asking people to rate their level of happiness have shown that peasants living in dung huts in isolated villages feel significantly happier, on average, than the urban poor in wealthy countries.

Happiness, it seems, is more about cultural expectations than it is about material wealth in the abstract. When people feel that they have as much as the others in their society, they are happy; but when their culture dictates that they ought to have something else, they're likely to complain about whatever they don't have and to see themselves as unfairly deprived. People tend to take for granted many things that make their lives easier—such as electricity and running water—if everyone around them also has these things, and they don't feel happier because of having them. On the other hand, peasants who have never had such conveniences in their villages don't have any reason to think about it.

I would take this point even farther and say that it effectively answers not only the snarky commenter, but also the original question of why autistic people have different levels of satisfaction with their lives. There are some who feel like the urban poor in the surveys, believing that if they weren't autistic they could accomplish more in modern society. Others have an attitude more like the contented peasants, never having thought of themselves or their autistic family members as lacking anything in particular, and taking offense when those who don't share their perspective find fault with their way of life.

When people have different cultural expectations, arguing about how they ought to feel isn't likely to change anyone's point of view. As with any such differences between groups of people, it's often more useful simply to discuss what they feel without being overly judgmental about it, while working toward a more constructive mutual understanding.

Wishing a happy New Year to all!

Thank You, President Obama

When I endorsed Barack Obama's presidential candidacy on this blog in early 2007, it was because I judged him to be an enlightened and progressive thinker who would be capable of seeing the autistic population from a multicultural perspective—not as a plague to be fought and eradicated, but as a minority constituency made up of human beings and worthy of the same respect and representation as any other citizens.

I can't think of a time when I've been happier to learn that my first impression was accurate. President Obama made it clear that he is indeed a good friend of the autistic community when, as announced in this White House press release yesterday, he nominated Ari Ne'eman of the Autistic Self Advocacy Network to serve as a member of the National Council on Disability.

Here's an excerpt from the press release:


President Obama Announces More Key Administration Posts, 12/16/09

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

•Marie Collins Johns, Deputy Administrator, Small Business Administration
•Gwendolyn E. Boyd, Member, Board of Trustees of the Barry Goldwater Scholarship and Excellence in Education Foundation
•Jonathan M. Young, Chair, National Council on Disability
•Carol Jean Reynolds, Member, National Council on Disability
•Fernando Torres-Gil, Member, National Council on Disability
•Chester Alonzo Finn, Member, National Council on Disability
•Gary Blumenthal, Member, National Council on Disability
•Sara Gelser, Member, National Council on Disability
•Ari Ne'eman, Member, National Council on Disability
•Dongwoo Joseph "Joe" Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”


YEE-HAW!!!

Autism Speaks to Hurricane Victims: What, You Thought We Cared?

I'm reposting, in its entirety and with the author's permission, an e-mail from a New Orleans mom whose family lost their home to Hurricane Katrina. After seeing an Autism Speaks page that asked for donations to help families with autistic children who were homeless after the hurricane, she made the mistake of calling to ask for help and got nothing but grief.


Thank you for posting this information about Autism Speaks' impressive generosity . . . to its staff, bankers, and PR people. It doesn't surprise me that Autism Speaks shovels piles of money at their executives and their Park Avenue rent. In 2005, I personally found out just how eager they really are to help the families they claim to raise money for.

Our family was displaced by Hurricane Katrina and lost half of our household goods in the flood, including a car. We evacuated to New England, where we had some relatives, but we were otherwise completely isolated from everyone we knew. I searched online to try to find out what happened to a New Orleans friend, another parent of a child with autism. I was thrilled to find her mentioned on a page for "AutismCares," a project that Autism Speaks was asking people to donate to, so they could help families like ours who were homeless and trying to help our children with autism cope with all the upheaval. The website was featuring my friend, who was supposed to open a school for kids with autism, but Katrina hit the city on the day it was to open, and the school building was totally destroyed. Give to AutismCares, the site asked, so we can help deserving people like this.

I sent an e-mail to the contact person listed on the site, asking them to forward my contact information to my friend, so we could provide each other with emotional support. I also applied for some assistance because we were about to move back to New Orleans from Massachusetts. I spoke on the phone with an AutismCares woman who wanted to know exactly how much money we were requesting, and what it would be used for. She would have to be able to justify the expenses to her boss, she said, so she would need us to fax her an itemized estimate before they could even consider sending any funds.

We had to get a trailer hitch for our car because we were going to tow a small trailer with goods that family friends had donated, so that we could start over. We knew from many summer trips back and forth between New Orleans and the relatives' house that the drive would take 2 1/2 days (driving 8-10 hours a day), so we were hoping that AutismCares could help us pay for two motel nights--we're not talking about the Hilton, mind you. Comfort Inn, Quality Inn. All in all, we were only asking for about $300.

The AutismCARES woman I spoke to took the most uncaring tone of anyone I had dealt with so far, and I'm comparing her to FEMA operators and Red Cross operators, two other organizations that were supposed to help us, but didn't, despite hours spent on the phone and multiple calls. The AutismCARES lady implied that we had no right to be hauling anything across country. If we had so much stuff, we couldn't be that bad off. (The only reason we had any of these things was because it was donated; we sure didn't have the money to replace what we had lost. Even if we could afford it, very few stores were even open in New Orleans yet.) She questioned why we needed to stay two nights in hotels. When I explained that we had driven the route many times before and knew how long it took, she told me in an exasperated voice that SHE routinely drove from Philadelphia to Florida in 18 hours. When I said that with two young kids, one with autism, such long days weren't really an option. Well, she said, SHE made the PA - FL drive with two young kids AND a cat, AND she did ALL the driving.

At that point, I gave up. There was obviously no convincing this angry lunatic that we deserved any help. From her tone, she clearly thought we were just leeches. I had too many other things to do in order to move out from our temporary lodgings and prepare for a cross-country drive. I couldn't waste any more time begging for help from someone who wouldn't do anything for me but make me cry.

Only later, as we made the drive, did I realize how much shorter a trip from Philly to Florida would be, straight down the eastern seaboard. We were going diagonally across half the country. Just getting from eastern Massachusetts to the far side of New York City takes most of one day. Driving from Philadelphia, she didn't have to deal with New York at all.

Later still, after we were resettled in New Orleans, I finally tracked down my friend, who had also made it back. We had a great reunion, and I eventually asked her if the lovely people at AutismCares had ever forwarded my e-mail to her. She looked like she wanted to scream. No, they had not, she said, but that didn't surprise her. They had been using her story to promote their cause, panhandling for donations so they could help all the families displaced by Hurricanes Katrina and Rita, implying that they were going to provide her with a huge donation so she could re-establish the school she had worked so long and hard to open.

"They never gave me a cent!" she said. "Not a penny!" When it finally became apparent that they had no intention of helping her, she had to contact them repeatedly before they took her name and story off their website.

Autism Speaks. Appropriate name. They are ALL TALK when it comes to directly assisting the families they claim to care about so much.



While I was verifying the accuracy of the above statements, I contacted the friend whose school was destroyed. She told me that it is all true, that Autism Speaks used her story for promotional purposes without ever giving her any money for her school, and that it went beyond that...


I was opening a school for autistic children the day Katrina devastated New Orleans. Not only was the school totally destroyed but I lost my home and all of my personal possessions, as did my parents, aunt, and everyone in my neighborhood. We couldn't access money from the bank and had to figure out where we were going to go and what we were going to do. I discovered that Autism Speaks or Autism Cares was in the area helping families. I called one of the people who now works for Autism Speaks and lived in Baton Rouge at the time. She said they would provide me with money, clothing, etc. I have a family of 5 and we all had 2 days worth of clothing, which is normal when evacuating. When I gave her my cousin's address in a well established, safe neighborhood in Baton Rouge and she discovered it was a predominately African American neighborhood, she said she didn't go to neighborhoods like that...

My family of 5 and I were sponsored by a church and autism organization in Austin, Texas where we spent 15 months being displaced before we could return to New Orleans. I was told they would help with the school. Well, we received nothing. Once I returned to New Orleans to rebuild my home and the school, I contacted Autism Speaks which was much larger by then to see if there was any money for school equipment, etc. I was told to look on the website and see if there was any grant I was eligible for. Well, there wasn't. I never heard from them again and was pretty much brushed off. I don't know of anyone that money went to or organization here in New Orleans trying to make a difference.

There is more I can say but I think this answers your question. All I can say is that Autism Speaks, doesn't speak for me.

Holiday Cheer

Although I have a general rule of not endorsing products on this blog, I am making a one-time exception (for which I am not being paid in any way) to let my readers know about the beautiful handcrafted Christmas ornaments sold by Highland Roses Design.





Its founder, who blogs at Cheaper than Therapy, describes Highland Roses Design as "a collaborative craft studio to help market the creations of adults who have disabilities and their family caregivers in an effort to help them become more financially independent. If they aren't mobile or prefer to work in their own homes, we pick up and deliver the supplies to them. Every step of the process is a collaborative effort."

She mentions on the Highland Roses Design website that people who have mental illnesses or developmental disabilities sometimes do not qualify for disability assistance but are unable to work without accommodations in a traditional employment setting.

Of course, the Americans with Disabilities Act requires employers to provide reasonable accommodations to qualified workers who have disabilities, but in recent years many workers could not assert their legal rights because of lax enforcement by the Bush Administration and conservative court decisions that greatly narrowed the scope of the law's protections. Although things are changing for the better as a result of Congress' passage last year of amendments to the ADA and a new administration that actually seems to be listening to self-advocates' concerns, at present there are still many people with disabilities who are unemployed because of discrimination, and craft projects such as making holiday ornaments can help such individuals to gain work experience. If you are considering buying handcrafted ornaments this year, please check out the Highland Roses site.