A Diagnostic Label Is Not an Insult

At best, a label is a means of enabling people to get useful services for their particular needs. Although the system does not always work as it should, at the very least a label ought to be simply a descriptive term, rather than being used as an insult by people who do not have the diagnosis. Unfortunately, we all know that such language is used all the time:

"That was such a retarded thing to do."

"He's so clueless, what is he, autistic or something?"

"You're acting like a total spaz."

Now, I'm fairly sure that most of the people who talk like this are being thoughtless, rather than intentionally hateful. If they had ever considered the possibility that they might be overheard by someone who actually had a diagnosis of Mental Retardation, or Autism, or Spastic Cerebral Palsy, they'd have chosen their words more carefully. But such language is so widespread in our society that millions of people just repeat it without thinking about it.

And then there's what I would call the flip side of using a label as an insult: Taking great offense to any criticism of one's behavior, out of fear that others might suspect that one has Big Bad Behavioral Disorder Cooties. Here are a few examples of that:

"How dare you slander me by saying that I have problems controlling my temper! I'm perfectly sane and nothing at all like Those People who go to anger management counseling!"

"Someone told me I was being passive aggressive in a conversation. I'm extremely insulted by that because there is an official psychiatric category of passive aggressive personality disorder."

"What do you mean, I'm too defensive? Are you suggesting I'm some kind of psycho?"

Once again, I think that in most such cases, it's a matter of thoughtlessness and not outright hate. The person who took such umbrage to the words "passive aggressive" probably never stopped to consider the social implications of insisting so vehemently that she wasn't at all like those with an official diagnosis. I'm sure it never even occurred to her that by equating a diagnostic category—which no one had suggested that she actually belonged in—to an insult, she was adding to the stigma against those who really were diagnosed in that category. That's often the way stigma works; it's like a children's game of Hot Potato, where everyone is so anxious to get it away from themselves that they don't care who ends up with it.

Sometimes, people just need to stop and think before they speak.

Lovaas Safari Tours at Erik's Ranch

Guest post by Rita Skeeter, award-winning journalist and ultra-reliable source for all the dirt you've ever wanted to read.


You're probably wondering what a journalist of my incomparable reputation is doing on a lowly Muggle blog. Well, yesterday while I was working on a much more important article about the Ministry of Magic's investigation of marauding trolls in the countryside, I just happened to come across a blogger trying to fight off three trolls who had been lurking under a bridge. Of course, all I had to do was flap my lips a few times, and the trolls ran away screaming. I don't know why you inept Muggles can't manage that.

Out of the kindness of my heart, I took the blogger to a nearby tea shop and bought her a nice cup of tea to settle her nerves. Then I slipped a few drops of a truth potion into her cup when she wasn't looking. I never go anywhere without it, naturally. A few minutes later I had this blog's password, and I took the opportunity to do a bit of snooping. Well, wouldn't anybody?

In the drafts folder, I found a half-finished post about a proposed residential facility in Montana for autistic adults, called Erik's Ranch, whose advisory board includes the well known behaviorist Dr. Lovaas. Of course, he's not as well known as I am. Because I'm of the mind that all Mudbloods belong in institutions, I decided to rewrite the post to include a few of my own keen insights.

It seems that Dr. Lovaas' public image has been refurbished somewhat since the days when he boasted that he could cure autistic kids by slapping and screaming at them. Even the cleverly named Autism Speaks, which has never actually had any autistic people speaking for it, has jumped on the rickety old Lovaas bandwagon by touting ABA-centric autism insurance legislation. Now, I told the Wrights they ought to hire a witch or wizard to put a repair spell on that old bandwagon before the wheels fall off. Even a first-year Hogwarts student could do that. But did they listen to me? Nooooo, like all Muggles, they're much too full of themselves.

This morning, just because I don't like being ignored, I stuck a few pins into a voodoo doll where Suzanne Wright's heart ought to be. I still haven't figured out why it had no effect whatsoever. Not that I care what happens to anybody who's as incompetent as she is. I'll just point out here that You-Know-Who does a much more effective job of eradicating bothersome minority groups, as well as dealing with obvious Mudblood sympathizers like Brian Reichow of Vanderbilt University, who, along with his co-authors in a 2008 study, had this to say about autism treatment hype: “There have been a number of different reviews of evidence-based practices of treatments for young children with autism. Reviews which have critically evaluated the empirical evidence have not found any treatments that can be considered evidence-based.”

Humph!

Anyway, back to Erik's Ranch, which is described on its website as "a structured environment for lifelong learning that encourages participation by residents, and serves as a destination location to attract family and friends to share experiences with their loved one. The ranch will offer horseback riding, photo safaris and other ecotourism adventures…"

The website is full of nice warm fuzzy cheerful happy-sounding buzzwords like community, inclusion, and the often repeated phrase "lifelong learning." However, there's no mention of what happens when residents decide that they don't want to stay there lifelong. Too bad for them, I guess. They should've made more of an effort to become indistinguishable from their peers. Then they wouldn't have had to face the consequences of being, in the website's own terms, "children who didn’t make it to the recovery we all hoped for."

Residents will be given "work" opportunities (the website's authors are the ones who put the term "work" in quotes, which shows what they think of it) and will be placed in jobs as groundskeepers, tour guides, and other service positions. Visitors to the ranch will enjoy this fascinating opportunity to create photos and videos of the lovely Montana scenery and wildlife—and, presumably, of the curious behaviors of the savage autistic natives on the reservation. It'll be just like taking photos on an old-timey colonial safari a century ago, when the sun never set on the British Empire, and when nobody except common riff-raff cared about such foolishness as human rights and respecting the dignity of other cultures.

If I were in charge of running Erik's Ranch, though, I'd have better sense than to let the general public roam randomly around with video cameras. After all, what if a slapping and screaming incident, or some other abuse or molestation of a resident, ended up on the evening news? No hype-mongers worth their salt would risk letting their public image get out of control like that. It's all about careful manipulation of the media, people. But then Muggles can't be expected to have the natural journalistic savvy of a brilliant reporter such as myself. I figure they'll just have to learn the hard way.

Gotta run now—there's a hot new rumor about Harry Potter to investigate! I'll just put a Confundus Charm on this blog so that abfh will be too confused to notice the new post. Silly Muggles are always so easy to fool.

Morningside Elementary, St. Lucie School Board, Stop the Hate

In September 1957, after a federal court had ordered racial desegregation of the schools in Little Rock, Arkansas, an angry white mob surrounded Little Rock High School in an attempt to prevent nine African-American students from entering the building. When Arkansas officials failed to restore order, President Eisenhower sent in federal troops to protect the students, who came to be known as the Little Rock Nine. While attending the school, the students faced vicious bullying not only from racist classmates, but also from some teachers and other school employees. One of the students, Melba Pattillo Beals, later wrote a harrowing memoir entitled Warriors Don't Cry.

While this may seem like ancient history and something that could never happen again, even now in the 21st century some families with autistic children are enduring bullying and harassment from bigots who want to segregate their children. Melissa Barton, who successfully brought a complaint that resulted in the suspension of the teacher who incited a group of kindergartners to vote her son out of class, has faced ugly retaliation as a result of defending her son. Her children also have been attacked by haters. I have reposted an open letter from Ms. Barton along with her appeal to the school board and superintendent for decency, proper enforcement of the law, and respect for her family's civil rights:


I am not sending this to you so that you may have sympathy for our family but be aware of what retaliation comes with defending your child. If this is happening to you as well, do not fear. A wise friend once told me: Wishing you a day without retaliatory behavior, if that is possible. One of my inspirational quotes from Gandhi to you: First they ignore you. Then they laugh at you. Next, they fight you. Finally, you win.

Since my defending Alex our family has been bullied beyond anything I could have ever imagined. The bullies are not children but their parents, teachers, law enforcement and a Vice Principal.

As I write this to you I almost do not know where to begin. First, my son Kyle who is ten is in the gifted program at the very school that treated Alex so cruelly. This is the only gifted program in my area so I have no other choice.

In the beginning of the year I received a letter from the principal of the school warning me to leave. Within a few days my ten year old had been pushed physically by the Vice Principal of the school right in front of me! The police said that there was nothing that they could do, then it happened again.......still nothing. Later, Kyle, my ten year old had been given grades that were not accurate after a letter from my attorney they improved within days ten points or more. In January, I received a notice from the school that they were pursuing a truancy case against me for Kyle who had only missed five days of school all with notes. The truancy officer was shocked to find that the school wasted her time and mine. During all of this I have been fighting for a IEP for Alex and battling the district for a FAPE under IDEA Law - still not one service to date - In February, Wendy Portillo decided to appeal her punishment as a teacher by the district : http://www.tcpalm.com/news/2009/jan/29/alex-barton-teachers-suspension-appeal-be-heard-mo/ The very night the above article came out in our local news, I received six hang up phone calls from the school number.

At the appeal for Wendy Portillo, teachers from Morningside heckled me and my oldest child infront of media. One teacher in particular seemed like he had mental issues and a breakdown was taking place in the parking lot of the appeal building. When I phoned police to speak to the School Resource Officer Division, I was treated very poorly and told that it was not their liability to protect my son at school.

I can handle the snares from teachers, staff and parents at the school. I can handle letters to our local news paper from parents at the school with nasty comments. I can handle calling the school and being hung up on nearly every time I call to speak about my son Kyle's education. But I have to draw the line somewhere:
Last Friday http://www.cbs12.com/news/barton-4717586-says-school.html

When I called the SRO to the school about the incident, she wrote a police report that was bias and claimed that there was nothing that could be done. She did not even question the other mother until late in the day as she felt it best to wait until she got off of work. In the report the SRO writes that I did not appear to be pregnant, although I am clearly six months along. The woman was never questioned about stalking me as she said she had been.

We have had police officers drive to our home and run the plate of visitors for no apparent reason. I have been followed by these same officers to and from the school every day. The SRO's Sargent referred to me as a con artist to a dear friend of mine and the list goes on and on.

But, it hasn't even gotten bad yet. Yesterday, I was forced to send the following email to the school board, and superintendent:

Mr Lannon, Mrs Renew and members of the board:

My name is Melissa Barton,

The reason I am contacting you today is a serious issue.

My oldest child Kyle Barton is a 4th grader at Morningside in the gifted program as it is the only one in my zone. From the beginning of this year there have been miscellaneous incidents with staff members at Morningside Elementary directed at my son Kyle due to a separate ongoing issue with my other son from members of Morningside and now parents of the school.

Recently a parent came up to me and told me that she had been following me. She also made threats to harm me and my unborn child on school property with no consequence to her. SEE: http://www.cbs12.com/news/barton-4717586-says-school.html

Today, I went to pick up Kyle from school as I do everyday, with my younger son in tow. When I arrived at Morningside I immediately was approached by a woman holding a picket sign ( I started to snap photos with my cell phone). As we pulled into the parent pickup line where all the children stand to wait to get into their parents cars my young six year old son with autism and I noticed several other possible parents/others holding picketing signs that stated "Our children love Morningside" "We love Morningside" and other like worded things regarding teachers at Morningside. This took place on school property just three feet or less from my son Kyle. One of the picketers heckled my young autistic son as he sat scared in the front seat of my car. My son Kyle got into our car with tears running down his cheeks. We also noticed was several staff members and one volunteer from Morningside standing directly next to the picketers. Of the staff I witnessed ESE Coordinator, Cathy Oliver and Patricia Gascogine, Assistant Principal names are the ones I know. Other staff were camped out just inside the doors of the school watching the protest about our family.

Here are my concerns:

Parents that are strangers were feet away from my son Kyle and other children making remarks about me while your staff stood idly by. Not only was his safety at risk but his mental well being as well. Additionally, these picketers on school grounds were taunting my autistic son as we drove past to get Kyle. These actions will impact my children for years to come.

I sincerely hope you consider this to be a VERY SERIOUS occurrence and take the appropriate measures to make sure it never happens again in your district and to make an example in general of the staff like Mrs. Oliver and Mrs. Gascogine. There is something seriously wrong with the picket being allowed take place while staff stand by and do nothing all on school grounds.

I am sickened, outraged and utterly beyond words. This is not only morally wrong but legally as well.

I expect to be contacted within the next three school days with an apology for my children and what steps you are going to take to discipline the staff involved and prevent those parents involved from coming onto school property for the purpose of bulling, harassment or retaliation.

I hope we can expeditiously come to an agreeable solution.

Sincerely,

Melissa Barton

Turning Trolls into Stone

… or, failing that, into cash.

Last year, Barack Obama's campaign website attracted a very active and enthusiastic blogging community that encouraged visitors to support the campaign. There was just one problem: Trolls who visited the site to post negative comments on the blogs. On such a busy website, it wasn't practical to identify and delete all posts from trolls, and putting comments in a moderation queue would have interfered too much with the free-flowing discussion.

So the community came up with an innovative solution: Respond to the trolls not by arguing with them, but by making additional donations to the campaign. Whenever a troll showed up and wrote a negative comment, several regular posters would promptly respond by informing the troll that they had just made an extra donation in his/her honor. This had a salutary effect in convincing the trolls to take their disruptive attacks elsewhere.

I've been inspired to start a similar effort in the autistic community as a result of some particularly egregious rabble-rousing attempts by the usual cast of suspects. After they learned that Ari Ne'eman of ASAN will be featured in an upcoming Newsweek piece, Jake Crosby at Age of Autism and John Best at Hating Autism, along with a few other ignoramuses of the blogiverse, went into furious tirades urging their readers (what few they have) to write to Newsweek and complain. John Best, who somehow hasn't yet been locked up despite his long history of inciting terrorism, also made a death threat against Ari just for kicks.

Instead of just getting mad about it, I think it's high time for us to get even. So I'm encouraging everyone who supports neurodiversity and ASAN's advocacy efforts to take part in a new anti-troll initiative: Whenever you see ignorant drivel from the haters, make a donation to ASAN to help educate the public, and post about it on blogs and forums to let others know that we're fighting back against the trolls. I've just mailed a contribution of $ 50 to ASAN to kick off this campaign (that's $ 25 for each of you, Jake and John) and I also created an anti-troll fundraising page on change.org for online donations, as well as a pledge to support this effort. ASAN's mailing address is 1025 Vermont Avenue, NW, Suite 300, Washington, DC 20005, for those who prefer to donate by check.

In addition, if you wish to contact Newsweek to thank them for writing favorably about the neurodiversity movement, letters@newsweek.com is the address for letters to the editor for the US print edition and webeditors@newsweek.com is the address for the online magazine.

Edit, May 16: The Newsweek article has been published online.

Edit, July 28: The mailing address for ASAN as shown above has been updated.

Cassandra's Impact on Autistic Victims of Domestic Violence

Much of the criticism surrounding the faux Cassandra disorder invented by Maxine Aston, wherein she claims that being in a romantic relationship with an autistic person causes psychological harm to a non-autistic partner, has focused on the efforts of associated hate groups such as FAAAS to stereotype autistics as violent and unfit for family life. This false portrayal reflects a longstanding prejudice, recently addressed by ASAN President Ari Ne'eman, that people with disabilities are "inherently unfit as spouses or parents." To the extent this baseless prejudice is given credence by family law judges and social workers, it endangers the basic human right to marry and raise children. I received an e-mail just this morning, discussing the Cassandra scam and the harm caused by disability stereotypes, from a woman who wrote that "until I was 24 I wouldn't have been allowed to get married in many states in the USA. Why? Because I am epileptic."

Such stereotypes can be especially dangerous to autistic victims of domestic violence. Like other people with disabilities, many autistic people who are victims of abusive relationships are particularly vulnerable and may have great difficulty escaping from a life-threatening situation. If, because of the bigoted stereotype that the autistic partner is always to blame for family problems, an abused autistic's cries for help go unanswered, this could result in her death at the hands of her abuser. The feminist disability rights group F.R.I.D.A. points out that domestic violence against women with disabilities is widespread and that much more action needs to be taken to stop it. (For those of my readers who are in Illinois, there will be a F.R.I.D.A. rally at the State Capitol in Springfield on May 22, 2009, from 1:00 to 5:00 PM, addressing the issue of domestic violence against women with disabilities; please consider attending the rally to show your support if you can do so.)

I have reprinted below, with permission, a statement from an autistic woman who wrote of her struggle to escape a violent marriage and how difficult it was for her to explain the abuse to others. Fortunately, she was able to escape safely and to find people to help her. Others in her situation have not been so lucky.


I am having a very hard time explaining why I stayed so long, etc., because NTs do not seem to understand why a person with my apparent intelligence believed so many lies. I know this is a common thing among battered women, but trying to explain how an abuser would manipulate an intelligent woman's gullibility and social anxiety so well is very hard any time I have to deal with anyone who is not experienced with autistics or battered women in general. He is already using my inability to process information quickly to manipulate the court process by changing potential settlements at the last minute, while we are in court, so that I can't comprehend them in a meaningful way while I am on a time limit to sign. I have a very good attorney (legal aid turned us down so I had to pay for my own which is going to be very problematic financially since having a very good one is crucial and not cheap). We are very lucky to have one CPS finding against him and irrefutable evidence of infidelity (which is more useful than undocumented testimony about physical abuse, since he is of course lying about the extent of the abuse and trying to take advantage of the fact that the children are too young to go to court).

I am astounded by the lack of information on abuse against autistic partners right now and so saddened by the whole "cassandra" myth. My husband used my quirks as excuses for beating and cheating on me although from his perspective, having a wife who was afraid of conflict, absolutely faithful, very easy to lie to, easy to isolate so that no one else would know about the abuse and report it, and unable to conceal anything (including hidden bank accounts that I tried unsuccessfully to use to get out), was a huge plus. I have a friend who is a former attorney and battered women's advocate and is trying to help me communicate with my lawyer right now, which has been very difficult so far, but I am still very scared. Thankfully we have already gotten an agreement for no unsupervised visitation but it will still be very hard to endure the rest of the proceedings which may last a year or more.

The thing that gets me is that I know that as typical as I am of women on the spectrum in so many ways, I am sure there are a lot of people in my position who are suffering in silence. I was lucky that there are two staff members at the shelter with autistic family members who have helped advocate for me when the group living situation has become unbearable, but I don't know how it is in other shelters and suspect many other autistics in similar situations may not be so lucky.

I will have to look for that book next time I am at the library. It was a Gavin De Becker book that finally helped me read the nonverbal signs well enough to recognize the risk and get out quickly the day that I am sure I would have ended up dead or too injured to get the kids out in time. I continue to think the fact that I managed to find homes for the pets, get access to the car (I have never been allowed to have my own), and get the kids out of the house in less than two hours that day was a miracle.


Edit, June 27: Here is a link to a post by chaoticidealism on this topic, Cassandra's Opposite.

Community Choice Act Needs High Priority

During his campaign last year, President Obama promised the disability community that if elected, he would work for prompt passage of the Community Choice Act. This legislation would reform Medicaid to end the current institutional bias and increase access to community-based services and supports. It would provide those in institutions and nursing homes the option to receive community-based services, allowing them to leave the institutions and to live empowered lives within the community, and would address the problem of extremely long waiting lists by providing guaranteed access to a community-based benefit within the Medicaid system.

Instead of working to accomplish prompt passage of the Community Choice Act, however, the Obama administration has indicated that it wants to address health care reform first. This is unacceptable to disability rights advocacy groups such as ADAPT, which protested in Washington on Monday regarding President Obama's failure to keep his campaign promise to take action quickly on this important issue.

There are many people with disabilities who have been on waiting lists for community-based services for years, and in some cases decades. Some people ended up waiting so long that they died in institutions. This is not just another political issue that can be pushed aside, depending on how the winds blow. It is a matter of basic human rights and needs to be treated as such. Write to the President and your members of Congress to make it clear where you stand. For Change.org members, you can send e-mails quickly and easily by going to this action alert.