More About Stigma

Miri at Brute Reason has a very thought-provoking post up about social stigma, and whether anyone deserves to be stigmatized.

She doesn't think so, and she gives lots of very good reasons, including these:

When a group is stigmatized, they are considered less than human in some ways. Whichever aspect of them is stigmatized becomes the whole of their identity in our eyes,  and often this means that even if they change the actions that caused them to fall into that category in the first place, the stigma remains. ...
...
[W]ielding psychological manipulation as punishment really, really rubs me the wrong way. The attitude that if someone does something bad they deserve to be cast out and hated and seen as inhuman scares me. I think it's very normal and understandable to want to punish someone for doing a horrible thing, but, as I wrote after the Steubenville verdict, I'm not sure that's the most useful and skeptical response. I feel that our primary concern should be preventing people from doing bad things (both first-time and repeat offenses) and not satisfying our own need for revenge by punishing them.

But, as good as these arguments are (and I am still turning them over in my head, and will probably keep this idea, that stigma and ostracism are inhumane and that there is nothing anyone can do that is bad enough to make them deserving of such treatment, for a very long time*), I'm not sure I can follow them all the way.

Between the ongoing story I've been following in my local newspaper about a girl in my city --- identified only by the initials LP --- who was found locked in a closet in her mother's apartment and my discovery of the Homeschoolers Anonymous blog, and also Libby Anne at Love, Joy, Feminism blogging somewhat regularly about the disturbingly popular child-rearing philosophy of Michael and Debi Pearl, my mind has been more preoccupied than usual with the vilest, most extreme forms of child abuse.

I commented on Miri's blog that, if anyone does deserve to have a stigma permanently attached to them, it's the perpetrators of those horrors, particularly the Pearls (who were not content merely to abuse their own children, if indeed they followed their own method, but who wrote books proclaiming their combination of hard-core obedience training, enforced by frequent beatings, and withholding food from "defiant" children is the only thing that will guarantee a child will grow up to be a Godly person who is saved from Hell) and the mother in this ten-part personal narrative on Homeschoolers Anonymous.

Doing that to a child, for as long as the anonymous author's mother did --- from the spread in ages of the various children in the family, and the author's Conclusion where she mentions that her two youngest brothers are still with her parents and the abuse is ongoing, it had to have been more than a decade --- is a world away from, say, committing an armed robbery. This wasn't a single act, this was a long-term campaign this woman waged against her children. She stayed at home, ostensibly "homeschooling" her children throughout this period, so it's hard to see a line between these acts and the rest of her life. 

Yet, with the LP story, which is just as horrific, and which makes me feel just as much rage on the victim's behalf, I can see more of Miri's point. LP's mother was very young when she had LP, and at several points in the story you can see hints of someone who was overwhelmed, and who might never have done what she did to her daughter if she had gotten the help she needed but probably never asked for. It's hard to see whom it would help to stigmatize her, when she was already probably stigmatized for other reasons (poverty, blackness, living in a subsidized apartment, being an unmarried mother of three children by two different fathers), which might well have contributed to her feeling that the only thing she could do with her eldest daughter was to keep her out of sight.

But the Pearls, and the parents in the anonymous woman's story? They're not stigmatized at all, except by people like me, who have no power in their lives or social contact with them, or people who have left the conservative evangelical Christian circles those people move in. Within that community, they are revered as leaders and role models. I'm sure that this knowledge is part of the reason I want so badly to rain down opprobrium upon them: because, unlike Jacole Prince, they're getting off scot-free, and they continue to believe that what they are doing is right.

And Miri does grapple with the problem of great evil in her post, too --- where I chose to focus on child abuse, she wrote about rape. And she made another great point in doing so:

Being a convicted rapist is actually a very stigmatized identity -- it's just that rapists rarely become convicted rapists. Rape is known to be a Very Bad Thing, but rapists know that they can get away with it if they commit it in certain ways. Despite the stigma, rape is pervasive and rape culture exists.

I absolutely see a dynamic like this playing out in mainstream society's attitudes about child abuse; child abuse is so heinous, so evil, so stigmatized that we can't ever believe anyone we know is abusing their child. So we second-guess ourselves when we start to wonder about a child's suspicious bruises, unexplained absences, dirty clothes, poor hygiene etc. The stigma attached to child abuse is terrible, so we are reluctant to call it down on our neighbors' heads, even if we suspect they are abusing their children. What if we're wrong? We'll have ruined an innocent person's life! 

(This will sound painfully familiar to anyone who has been raped, or who has spent any time reading about rape culture.)

Another thing worth pondering about this problem as it pertains to child abuse is that, when the child who is being abused, neglected, or even murdered has a disability, the abusive, neglectful or murderous parent is not stigmatized so much as they are pitied. The poor dear, she was carrying an impossible burden. 

A mother can appear in a film in which she tells the camera she has thought about putting her autistic daughter in the car and driving off a bridge with her, and the main reaction to this film will be sympathy, not shock or horror. 

I point this out not to argue that parents of disabled children don't deserve sympathy, or much better support than they're currently getting from society at large, but to argue that this reaction leaves no room for the child. They're a person too, and they have the right to food, shelter, medical care, education, love, and as much freedom and autonomy as is developmentally appropriate**. Focusing on how hard it is to care for a disabled child, even if you're only trying to explain the parent's actions, works to excuse the parent and put some of the blame for their fate onto the child. It also works to make life harder for all disabled people, because it makes it sound like we're being unreasonable just by existing, and that attitude is exactly the kind of attitude that resists making accommodations for us, even when those accommodations are not particularly expensive, awkward or difficult.

Particularly when we're talking about children whose disabilities are behavioral, this idea that it's just too hard works to excuse awful things like restraint and seclusion, at home and in school. At its extreme, it can lead to parents keeping their disabled children in dog cages; they see no other way to treat them because it's too hard and it's not like the children are normal children, for whom such treatment would be abusive, no, they're abnormal children for whom it is necessary.

So even while I see that a heavy stigma attached to child abuse can be counterproductive, in that it might discourage people from reporting their suspicions, I also think there are some kinds of abuse that are not heavily stigmatized, that are even excused (i.e., abuse of children with disabilities, which is often framed as a tragic consequence of disability) or met with approval (i.e., abuse within insular communities that don't share the wider culture's norms).

And it makes me furious that there isn't a heavy stigma, that people like, say, Michael and Debi Pearl don't even think they've done anything wrong, and sleep the untroubled sleep of the just.

*"Keeping an idea" is what I do when I read or hear something that blows my mind, but that I do not immediately know whether to accept it as truth. I kept a lot of ideas related to feminism in the (long) time before I decided I was a feminist, and I kept an idea of Richard Dawkins's that I now think I do believe is true, that raising a child to believe in Hell (at least, a Hell that they could go to --- I'm not sure it's true if Hell is only for big evildoers like Hitler and Stalin) is an abusive practice. I'm also keeping the idea that veganism is a moral imperative for those who are able to adopt it. A lot of the ideas that I keep are of the form "actually, this thing that we do all the time is bad, and you should stop doing it/get other people to stop doing it.")

**This notion --- that freedom and autonomy can't be absolute when you're talking about children --- is actually more complicated than it sounds, especially when we're talking about children with disabilities, or dependent adults with disabilities. How can you define what is "developmentally appropriate" for a child whose development has been atypical? Especially if said child is ahead of his age in some ways while also being delayed in others? (This was me, and I suspect it is most autistic people!) I know only this much: the way these decisions are currently made gives too little freedom to developmentally disabled adults.

New Medicaid Regulations Are Open to Public Comment

A little over a month ago, the Centers for Medicare and Medicaid Services proposed some new rules for home- and community-based services for people with disabilities, trying to ensure that states do everything they can to make sure that disabled people covered by Medicaid can actually get the services they need in their own homes, or in supported residential settings where they have the same amount of freedom and control over their own lives that they would if they were living on their own.


That's the spirit of the law, anyway. Lots of advocacy groups made up of people whom this law is supposed to benefit have written recommendations for wording that makes sure the letter of the law honors the spirit --- that health-care providers receiving Medicaid funding to give people supportive housing don't just take the money and throw the intended beneficiaries into a group home that reproduces all the restrictions, power dynamics, and other bad things about institutions in a somewhat different setting.


The rule change is open to public comment until Monday; I'd like to add my voice to a chorus of voices emphasizing just how important autonomy and freedom from restriction are. If you have anything to say about it, especially if you've got any concrete ideas or relevant personal experiences, go here, click the big blue "Comment Now!" button, and let loose.


The Autistic Self-Advocacy Network and the Administration on Intellectual and Developmental Disabilities have both written about this proposed rule change; AIDD's page  is an easy-to-read summary of what the rules entail, while ASAN's page is more of a critique.


Here is the proposed definition of "home and community-based setting":

(i) The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, in the same manner as individuals without disabilities. 

(ii) The setting is selected by the individual from among all available alternatives and is identified in the person-centered service plan. 

(iii) An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected. 

(iv) Individual initiative, autonomy, and independence in making life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented. 

(v) Individual choice regarding services and supports, and who provides them, is facilitated. 

(vi) In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modification of the conditions, for example, to address the safety needs of an individual with dementia, must be supported by a specific assessed need and documented in the person-centered service plan: 

  (A) The unit or room is a specific physical place that can be owned, rented or occupied under another legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord tenant law of the State, county, city or other designated entity; 

(B) Each individual has privacy in their sleeping or living unit:         (1) Units have lockable entrance doors, with appropriate staff having keys to doors;         (2) Individuals share units only at the individual's choice; and         (3) Individuals have the freedom to furnish and decorate their sleeping or living units. 

(C) Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time; 

(D) Individuals are able to have visitors of their choosing at any time; and  

(E) The setting is physically accessible to the individual.

They also spell out what a "home and community-based setting is not:

Home and community-based settings do not include the following: 

(i) A nursing facility; 

(ii) An institution for mental diseases; 

(iii) An intermediate care facility for [people with intellectual disabilities] 

(iv) A hospital providing long-term care services; or 

(v) Any other locations that have qualities of an institutional setting, as determined by the Secretary. The Secretary will apply a rebuttable presumption that a setting is not a home and community-based setting, and engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient or institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex.

And here is the definition of "person-centered service plan": 

The person-centered service plan must reflect the services and supports that are important for the individual to meet the needs identified through an assessment of functional need, as well as what is important to the individual with regard to preferences for the delivery of such services and supports. Commensurate with the level of need of the individual, and the scope of services and supports available under the State plan HCBS benefit, the plan must: 

(1) Reflect that the setting in which the individual resides is chosen by the individual. 

(2) Reflect the individual's strengths and preferences. 

(3) Reflect clinical and support needs as identified through an assessment of functional need. 

(4) Include individually identified goals and desired outcomes. 

(5) Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports cannot supplant needed paid services unless the natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS. 

(6) Reflect risk factors and measures in place to minimize them, including Individualized backup plans. 

(7) Be understandable to the individual receiving services and supports, and the individuals important in supporting him or her. 

(8) Identify the individual and/or entity responsible for monitoring the plan. 

(9) Be finalized and agreed to in writing by the individual and signed by all individuals and providers responsible for its implementation. 

(10) Be distributed to the individual and other people involved in the plan. 

(11) Include those services, the purchase or control of which the individual elects to self-direct, meeting the requirements of [earlier section] of this subpart. 

(12) Prevent the provision of unnecessary or inappropriate care. 

(13) Other requirements as determined by the Secretary. 

... and rules for how the service plan should be drawn up:

Based on the independent assessment required in [earlier section] of this subpart, the State must develop (or approve, if the plan is developed by others) a written service plan jointly with the individual (including, for purposes of this paragraph, the individual and the individual's authorized representative if applicable). The person-centered planning process is driven by the individual. The process: 

(1) Includes people chosen by the individual. 

(2) Provides necessary information and support to ensure that the individual directs the process to the maximum extent possible, and is enabled to make informed choices and decisions. 

(3) Is timely and occurs at times and locations of convenience to the individual. 

(4) Reflects cultural considerations of the individual. 

(5) Includes strategies for solving conflict or disagreement within the process, including clear conflict-of-interest guidelines for all planning procedures. 

(6) Offers choices to the individual regarding the services and supports they receive and from whom. 

(7) Includes a method for the individual to request updates to the plan.

(8) Records the alternative home and community-based settings that were considered by the individual.

(That has got to be the greatest number of time I have had to type the word "individual" on any given day.)


I think this all sounds fairly complete, and airtight, but then I have zero experience actually living in this kind of environment.  


What do you, my readers, think? Do any of you have anything you would add, or change, to the above specifications? Without your input, I'm pretty much going to be echoing ASAN's recommendations in my comment on regulations.gov, but I'll hold off on commenting until, say, tomorrow night or Monday morning to see if I get any additional recommendations from comments here.  

"I Don't Care If They Hit You; You're Not Supposed to Hit Back!"

(Photo by Allison Long, for the Kansas City Star)

A recent article in the Kansas City Star covered a group with a different sort of anti-bullying campaign: it's a boxing-based fitness class just for teenagers who've been bullied or whose friends have been bullied.

It's called Fight Club, and in general I think it's awesome. It sounds, in a lot of ways, like exactly what I needed in middle school.

There's only one thing that bothers me about the program: it's not an actual self-defense class. The article stresses that the kids taking the class are encouraged not to fight back against their abusers, and that the boxing serves more as an outlet for emotions than as practical training:

It's not a self-defense class. Holly Reynolds, the woman who started the program, can't call it that for legal reasons. It's not about fighting, either, though Reynolds gave it the same name as the 1999 Brad Pitt movie about underground fight clubs.

This Fight Club is about getting fit, feeling strong and fighting the good fight, she said.

These teens don't spar with each other. They spar with their feelings.

It's not that the things the classes do offer --- improved physical fitness, confidence, an emotional outlet, a roomful of other people who are having the same experiences as you, along with adult trainers and mentors who are clearly on your side --- aren't also hugely important; I just worry that explicitly discouraging these kids from fighting back if they're assaulted undermines what the program is supposed to do. It's supposed to give you confidence and enable you to stand up for yourself or your friends; how can you do that if you freeze up once the confrontation escalates?

We have a serious problem in mainstream American culture, in that we tend to put all the blame on victims of violence --- especially certain kinds of violence. If you were raped, you must've done something to draw attention to yourself, or gone somewhere you shouldn't have, or trusted someone you shouldn't have trusted. To use some philosophical terminology, the rapist may have been the immediate or proximate cause, but you were the ultimate cause of your own rape.

It's the same with bullying, whether of children in school or of adults in the workplace or in their communities. If one or more people decide to harass you, stalk you, follow you around in groups yelling things at you, try to scare you, subject you to unwanted, gross and insulting sexual advances, physically attack you or vandalize your property, it's bad, but you must've done something to make them choose you as their target.

And with school bullying, adults tend to tell children very stupid, unhelpful things when those children ask for help, like, "Just ignore them; they'll go away if you don't respond." (More victim-blaming: you're only being bullied because you let them get a rise out of you!) They also hold victims of bullying to a much higher moral standard than the bullies themselves: no matter how in-your-face, menacing or even violent they get, if you hit them back, you're just as bad as they are. They ignore bullying until it does turn into a physical fight, and when that happens, they act as if all combatants are equally at fault*.

So, against that kind of cultural backdrop, I don't think it's doing the kids any favors to try and convince them they don't want to hit the people who are abusing them. Of course they do. Telling them they don't, when they know perfectly well that they do, would (I think) just work to undermine any impression you've made of being the rare adult who understands what they're going through.

Don't get the wrong idea; I know teaching kids self-defense won't magically enable every one of them to win a fight with a bully (especially those who are bullied by a whole pack of people), and I know it's not fair to expect victims of bullying to solve the problem on their own. In my ideal school environment, teachers and bystanders would play a much more active role in defusing incidents of bullying; I just think physical self-defense is also a tool kids need to be given, without shaming or second-guessing them when they use it.

*That happens to grown women, too, when they try to defend themselves against rape or domestic abuse.

This Is Awesome

Amanda Forest Vivian has an idea that I think really rocks, and one that I definitely want to be part of.

It's a website for people with disabilities to post pictures/videos of their art, with each person getting their own site where they can showcase their art however they want:

Crazy House is the name of a book by Henry Darger, an outsider artist. Outsider art is a hard-to-define category, but many people labeled as outsider artists have psychiatric or developmental disabilities.

Crazy House the website is an imaginary house where you can have your own room. Which is to say you can apply to be hosted on the domain which I have yet to buy, and then you could make a site for your art. All of these sites would be linked to from the main page, and would make up the Crazy House.

It's perfectly worth asking why this is necessary when there are so many places on the Internet where you can upload and share art. I'm not really sure why I want to make the Crazy House, except that I like the idea of sharing an imaginary house with other people instead of just having a lot of usernames on different huge websites. I also like the idea of an art space that is somewhat centered on disabled identity.

I would like to buy the Crazy House domain with other people for two reasons. First, it would be cheaper, and second, I would like the Crazy House to be something that isn't dependent on one person, but on several people. If anyone is interested in buying the Crazy House domain with me, please email me at awf.vivian at gmail (I'm hoping to figure this out by November or December).

If anyone can't or doesn't want to be part of buying the Crazy House, but would like to room in the Crazy House, sit tight. Hopefully I will be back in November or December telling you how to do so. And please signal boost.

I don't know if I have any readers who aren't also readers of Amanda's blog, but I thought I'd try and signal-boost anyway.

I also think the idea of a smaller, self-selected group of artists having a website to showcase their art together is a cool one, and I also like the idea of each person having total control over what their own site looks like. With Flickr or other image-sharing websites, you're restricted to showing your images one at a time in a slideshow, which can take away from the effect if you've got a series of related pieces. This also gives people room to have things together on one page that are in different formats, like art, video, music, animation, whatever else.

(I am a little intimidated by the prospect of having to build my own webpage from scratch, since I don't know anything about programming, but I figure I can probably learn what I need to. My dad has built a webpage for me before, to showcase my jewelry, and I learned a bit about how to do it by watching him. It doesn't look super hard; just something I've never done before.)

City Mouse, Country Mouse, Autistic Mouse

There's one more thing from Unstrange Minds that stuck in my head, that I didn't think to include in this post and which probably deserves its own post anyway, given how much stuff was already in the other post.

Anyway, in the chapter on autism in South Korea, Roy Richard Grinker alludes to something I've seen mentioned before, and am curious about.

While describing differences between rural South Korean villages and the capital city of Seoul in how these communities treat their autistic members, Grinker mentions some research conducted by the World Health Organization comparing how well people with mental illnesses fare in developed vs. developing countries:

An agricultural area often belittled by Koreans and long neglected by the government, Cholla-do remains the most underdeveloped region in one of the richest countries in the world. Cholla residents are familiar with discrimination and adversity and find it hard to improve their class and social status. They consider it a great success to make one's career in Seoul, where more than 25 percent of South Korea's 44 million people now live.
...
Still, after asking a few questions here and there (Are there any children who don't speak well? Are there children here with brain disorders?), I found a sixteen-year-old boy and a nine-year-old girl in a mountainous county. Everyone seemed to know about them. And when I talked to the barber and the local grocery-store owner about them, there was no hint of discomfort or pity. Peter, as his mother wanted him to be called, was good with bicycles and served as a messenger for two villages, delivering letters and packages with a broad smile. He saw a doctor once every two months and was medicated with a small dose of an antipsychotic drug that calmed his anxiety and some of his repetitive movements. The girl, Soo-Rin, was in the village with her single mother only on weekends because she attended a special school for children with Down syndrome, cerebral palsy, and mental retardation. But everyone knew her too. Her room at home was lovely, pink with lace curtains, stuffed animals, and Disney characters. Her mother said she takes a medication at school to help her pay attention, but she didn't know what it was called. In these villages, you can find proof of something the World Health Organization has been arguing for years: People with mental disorders do better over time in remote, nonindustrial societies than in urban, industrial ones.

I'd read about that research before, in Robert Whitaker's book Anatomy of an Epidemic; in that book, he argues that the reason the people in developing countries are more likely to recover from acute mental illnesses, and don't become chronically mentally ill as often as people in developed countries, is because people in developing countries often don't have access to psychiatric medication, which Whitaker argues actually worsen a person's condition over time.

Grinker lists an earlier book by Whitaker --- Mad in America --- in his bibliography, along with a book-length follow-up to this study (full text here), but he is not making Whitaker's argument here. Instead, he thinks the people in the rural villages are more accepting than the people in the cities:

This is not to say that life for the disabled is easy in the villages --- even someone with a mild speech impediment, who is otherwise normal, will have just as much trouble finding a spouse as an urban dweller with the same problem. And parents can be just as devastated. One man confessed to me that in his despair he once took his young autistic son high up in the mountains, intending to slit his throat, but couldn't bring himself to do it. But for most parents of disabled children, life in the rich city of Seoul is more stressful than in the more humble village. One of the paradoxes of rural life is that people in the villages tend to be relatively accepting of diversity. Little remains secret, and there seems to be a place for everyone. In the rural areas, people assume that things would be much better for their children in the city. But in the city, in the sprawling, indistinguishable apartment complexes of Seoul, most people do not know their neighbors, even though they watch them as closely as they can. The pressures to measure up can seem overwhelming, and families try to keep anything that might reflect badly on their status hidden from view. The moment you bring your disabled child outside in this densely populated city is the moment you are confronted by strangers, people who will watch and judge you.

Later on, he says something that would seem to rule out Whitaker's non-drug hypothesis: the children he met in the rural villages were taking psychiatric medications, while very few of the children he met in Seoul were taking any.

He sees this as symptomatic of the prevailing viewpoint in Seoul that autism is basically a death sentence; if nothing can make an autistic child non-autistic, what's the point of drugs or therapies? It all just costs money, and with drugs there's also the matter of side effects to consider.

(I actually thought his interviewees' concern about the side effects of psychotropic drugs was sensible; I thought Grinker in this passage was being way too uncritical of US psychiatrists' willingness to prescribe these drugs to children when so little is known about their long-term or developmental effects. I think his point about the all-or-nothing mentality is a valid one --- and that mentality is certainly not restricted to South Korea! --- but I don't share his faith that drugs always lead to better quality of life. Indeed, often their use is a symptom of the same societal rigidity that he blames for making urban life so much harder for autistic people to participate in than rural life.)

Anyway, his mention of those WHO studies reminded me that I had wanted to read them (and there are still more follow-ups, meta-analyses and similar studies from more recent years, too), and post about them.

Small Victories

I saw something in this past Sunday's Kansas City Star that gave me a tiny bit of hope, both for our culture in general and the ongoing atrocity that is the Judge Rotenberg Center in particular: the Thayer Learning Center*, a boot-camp-style institution for "troubled teens," which has accumulated a fairly long list of complaints of abuse and neglect of its inmates since its opening in 2002, has closed, and been sold to a Cheyenne Indian educator named Lakota John, who plans to open a new, very different kind of school on the old Thayer grounds.

The new school will be geared toward Native American young people of all tribes, with emphases on sustainable agriculture (using traditional, Native American farming methods), outdoor skills, and Native American culture, art and spirituality.

While I'm sure the original proposals for the old Thayer Learning Center sounded equally high-minded, and while, at this early stage, all we really have are words, I still think that, based on what's been said about how the White Buffalo Academy will be run, there will be factors in place offering some protection against a Thayer-like pattern of systematic abuses taking root there once more.

First, and to my mind foremost, where Thayer kept its inmates isolated from their families and from the larger community of Kidder, Missouri, the White Buffalo Academy is meant to be extensively integrated with various communities: not just Kidder, but also with the various Native American tribes, international humanitarian organizations, and, eventually, other schools and youth organizations (like the Boy and Girl Scouts) across the region.

From the Chillicothe, Missouri Constitution-Tribune:

"If he does what he plans to do, I think it will be a huge asset to the community," says Kidder Mayor Melissa Gough of Lakota John. Her concerns about the future of the facility center on the controversies surrounding the former teen boot camp. ...
...
Mayor Gough has expressed her concerns about secrecy surrounding the former operation to Lakota John and he has assured her that students who may help with trash pickup and other community projects in Kidder will be allowed to talk to locals and give their names (Thayer cadets were not allowed to do so). In fact, he wants to be open and totally honest with the community and invites anyone who wishes to come and visit the facility and talk to him about his plans to open the academy in the next 30 days.

From the St. Joseph, Missouri News-Press & Gazette:

The school will become part of the Utah-based Sacred Path Recovery Program [link], with plans to open in all 50 states and Canada. The organization is composed of various tribes. An informational brochure said Sacred Path "is designed to help people identify, process, and release the issues that deny them the right to live happy, productive lives."

Traditional American Indian methods will be utilized.

"It's for all kids that want to achieve a higher level of learning," added Lakota, whose ancestors hailed from the North American plains.

The academy also will feature American Indian powwows, drumming, sculpting, equestrian arts, an amphitheater with surround sound for various performances, and other activities. Vietnam War veterans will be brought in as speakers.

Another emphasis will be placed on growing quality food, proper eating and overall wellness.

"We're going to start an agricultural program," he said. A slow-drying process for food will be created to benefit overseas humanitarian projects, and negotiations are under way with major companies for their assistance. Herbs will be grown on a farm and livestock will be raised. Outdoor skills will be taught.

"Our soils are going to be phenomenal," he said.

Plans also call for extending invitations to the region's scout programs and schools. The academy will serve perhaps 100 students.

"My thing is making sure we do things in moderation," Lakota said. "We want to build a community of solid individuals ... I want to do this very low-key. We want to do this with love."

The academy will offer preparatory education for students who wish to enroll at Haskell Indian Nations University in Lawrence, Kan., and other institutions. A grand opening date for the White Buffalo Academy will be announced later.

Besides the emphases on transparency and community involvement, which at the very least would make abuses harder to keep hidden for very long, as the Thayer owner-operators did, I also think I see an important difference in the two enterprises' attitudes toward the young people in their care. Thayer Learning Center's guiding principle was literally to break the wills of its young inmates: the harsh treatment and withholding of basic necessities (like, say, water, food, rest, opportunity to bathe) until inmates "earned" them by obedience were meant to teach these willful children "the meaning of no." A philosophy like this is practically a recipe for abuse and neglect, because when you treat people who depend on you like enemies to be vanquished, you will react to everything they say or do as if it's a threat or a stratagem. You'll learn to ignore their signs of distress, and you'll let them die --- of something as treatable or preventable as a spider bite or overexertion or dehydration --- before you'll risk letting them put one over on you.

I don't see this kind of alienation in any of the online material I've seen about White Buffalo Academy or its parent organization, the Sacred Path Program. Rather than stamp out behaviors/attitudes they don't like, these organizations seem more interested in empowering their students, teaching them to be the best they can be and restoring their ancestral heritage and culture to them.

So, on to the million-dollar question: What factors forced Thayer Learning Center to close, and can similar factors be made to converge on the Judge Rotenberg Center? What makes these two abusive institutions different?

*Pedantic linguistic aside: I *HATE* the euphemistic use of "learning center" to describe what is essentially a prison. While the mental and behavioral adaptations people make to survive in a prison/institution environment --- keep your head down, don't cause trouble, don't draw attention to yourself, keep quiet, mind your own business and do as you're told --- might be called "learning," in the Skinnerian sense of that word, they also tend to sabotage a person's capacity for any other kind of learning. You get really good at surviving that hostile environment, but the price you pay is that you lose those parts of yourself that don't help you do that.

Laura Tisoncik describes this kind of psychic shriveling really well in this 2004 conversation with Amanda Baggs:

I spotted [characteristic psychiatric-institution-survivor behavior] in you right away. How do I describe it? You were an obvious case of it. You had a kind of submissiveness ... you were oftentimes looking for where the rules were so you could follow the rules. ... You were waiting or looking for the institution around you, as if, it's like, "Where is it, it's hiding here somewhere!" This is not necessarily a very constructive behavior out in the real world, because it is particularly passive in many ways, and because it is sort of like looking around for it. I really got a sense that you were looking around all the time for the rules. And terribly terrified that you were violating all the rules.

A Brief Experiment in Communal Living

As you can probably imagine, I was a little worried about whether I'd be able to adapt to life at The Farm's Ecovillage Training Center. Classes were all day long, from 6:30 AM to 6 PM, meals were shared, and we all lived together in the Eco-Hostel, sleeping in dorm-style rooms with a bunch of bunk beds and sharing one or two bathrooms. From what I've experienced previously, in high school and college, just the human contact I had from going to classes was enough to tire me out. I could not imagine being constantly around people for ten days straight.

With this kind of background, I was accordingly skeptical of my ability to stay sane in a communal setting. It turns out I needn't have worried; oddly enough, I was probably the most at peace that I'd ever been while I was at The Farm. I never experienced sensory overload, even though we were constantly doing things, and often outside, and even though I retained my hypersensitivity to visual and auditory stimuli and my inability to tune anything out. I also did not find interacting with any of the people there to be a draining experience; normally, I have to withdraw from company periodically to regain the energy I lose just being around other people. I did not have to do that there. I also did not experience paranoia or panic attacks, both of which I've been having for about five years now whenever I enter a crowded space. Finally, I did not have depressive episodes while I was there, which may not be significant given the short duration of my stay and the cyclical nature of my depression, but I arrived deep into an unusually severe "down" phase. So either the depression suddenly lifted of its own accord and did not return (not out of the question since episodes often begin out of the blue), or whatever environmental factors negated my sensory and anxiety issues also alleviated the depression.

I don't yet know why I felt so much better overall there than I ever had anywhere else, although I have a couple hypotheses. About the sensory stuff, the rural environment may be enough to explain it. Obviously, while there's as much stuff to perceive in a rural or wild environment as there is on a busy city street or in a crowded room, the stimuli are of different types and aren't as densely packed together. You don't get a huge, oppressive wave of sights and sounds breaking over you all at once, like you do entering a crowded room; you get a steady ebb and flow. The other stuff might well have lessened just because the sensory environment was more tolerable; a lot of times I find if I am at or near overload, the slightest stressor can cause me to melt down, just because I have no energy left to deal with it. I also might have fared better with the social interactions there than elsewhere because they were unusually direct: as total strangers sharing an immersive experience, we confided in each other without any of the usual preliminaries, which tend to trip me up.

I took advantage of my unusually sociable mood to answer everyone's questions about my life with autism and autism in general; it turns out there were quite a few people there who knew someone with it. There was an older man in my class who had a nephew with Asperger syndrome, who was brilliant in physics but had underperformed at his old private school because he tested poorly (mostly due to poor fine-motor skills*; he could not get the thoughts out of his head and onto paper in time). This man was accordingly very interested in how I thought and how I perceived the world, about which I told him as much as I was able to get out. There was also a man who had taught autistic children in a special-ed class, and a woman who did not mention any specific experience with autism, but who is a retired schoolteacher and also expressed a lot of interest in how I thought and how I differed from most people. (She asked me once, "Can you lie?" to which I responded after much thought, "I probably can, but it would be really hard.")

One exercise we did as a class that I found instructive was the consensus circle. I have always been a lot more successful at one-on-one interactions than any kind of group discussion (except for class discussions, where you can raise your hand). I cannot judge conversational timing, or tell the difference between a pause and the end of someone's turn to speak, and I turn my thoughts into words so slowly that I'm usually running several jumps behind the conversation in terms of what I'm ready to express. Not surprisingly, group conversations almost always leave me behind. I expected this to happen during the consensus circle, so I proposed that we discuss that: how can people with poor communication skills gain access to full participation in a group discussion? We never got around to addressing that question explicitly, but there are several methods the consensus circle uses that help lower the barriers to participation.

They include:

• explicit, agreed-upon nonverbal signals, such as "twinkling" your agreement (spreading your hands and wiggling the fingers) or steepling your fingers if you want to speak next
• use of a "talking stick" or other formal way of recognizing who is speaking
• having officers, the Facilitator and Vibes Watcher, whose duty it is to keep the discussion on track, make sure no one person dominates, make sure everyone has a say who wants one, and monitor the emotional undercurrents of the discussion and defuse any overly intense situation

Again, the dynamic at this particular session was so laid-back and welcoming that I was able to participate in group discussions without all that rigmarole, but those are ideas I could use elsewhere, if I think I am being shut out. In particular, the rule that explicit signals be used looks like a good one, and a great equalizer for autistics, who lack the body-language-reading ability that NTs take for granted.

*There is one theory, advanced by Morton Ann Gernsbacher, that the deficits in communication observed in autism are not deficits of social attachment, attention or "theory of mind," but rather arise from "executive" problems --- i.e., trouble verbalizing or acting on thoughts. The paper I link to establishes a correlation between autistic toddlers' motor skills and later speech fluency, which would support the hypothesis she put forth in a lecture at KU, that this lack of executive control explains the communication difficulties that characterize autism.