An Inconvenient Truth

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Unfortunately, one of the things that has become obvious to me over the years is that the general public doesn't have a clue what it's like to raise a special needs kid, has no real desire to know what it takes, and when times are the least bit tough the public is especially willing to throw our kids under the bus if it will help their own situation in any way. This is true, whether it's a smaller, relatively well off district like the one we live in, or a large one such as Los Angeles.

One might expect that the Superintendent for one of the largest districts in the country would be a little savvy when it came to talking about how resources were allocated during an economic downturn, and would refrain from saying things that were just REALLY STUPID. When L.A. schools Supt. Ramon C. Cortines was talking about a school for the blind in the LA Unified School district he recently said,

"Some of those are very, very severe cases, but you have to look at it in perspective. When you fund some of the special ed things, you're taking from regular kids."

Aside from it being blatantly against the law for economic considerations to be driving who gets what services, there is the whole "attitude" thing. The attitude that says that special needs kids are not "regular" children. The subtext that assumes that they won't become productive members of society, so why invest any money in them. When such attitudes result in self fulfilling prophecies, they are felt to be proof positive that they were right all along. The attitude that while "regular" education is a right in this country, that special education is a privilege that can be easily revoked at the first sign of money trouble. The attitude that my kid (and millions like him) just aren't worth it.

I have found, as I stated, that such attitudes are not limited to uneducated or poor people. Indeed, my personal feeling is that such attitudes get worse, the higher up the socioeconomic scale one is on. It doesn't matter what overall political viewpoint you hold. Platitudes regarding equality rapidly fall apart when it comes to spending a dime on special needs education instead of the football team.

I don't know what the solution is. I'd like to think that the only solution is success. Being out there, in the public eye, as much as possible. Expose the public to successful former special ed. kids as much as possible, and eventually they'll change their mind. And holding them to the letter of the law until then.

Where the Rubber Meets the Road

The organization ADAPT staged a non-violent sit in at the Whitehouse today in Washington, D.C. For those of you who aren't familiar with ADAPT, it is an organization that advocates for the civil and human rights of the disabled.

This protest was in support of the CCA, or the Community Choice Act. If passed, this act would provide much more support for the disabled to live in their own homes, instead of being shunted into institutions (both large and small).

The current administration has talked a lot about support for the disabled. It's time to see if they're willing to support their words with action. It will take spending some political capital to get lawmakers to sign onto this bill (the disabled, being mostly invisible to lawmakers, are not seen as a significant part of anyone's voting base). Today's action raises the visibility of the disabled, and may be the nudge that lawmakers need to actually act in their constituents best interest.

Instead of having the money flow to people through big agencies and big institutions, the CCA would allow more of the money to follow the individual, such that they could procure assistance in their own home, and remain independent and integrated into their own community.

If you're in the US, contact your own legislator and urge them to pass this bill. For your Senators, the bill number is S. 683. For your House members, the bill number is H.R. 1670. If you're having trouble composing your thoughts, you might want to refer to these talking points that ADAPT has gathered together.

Making a Difference, 10 minutes at a Time

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I think the internet is great. It's a great way of connecting with people in your community and across the globe. It's big enough that there is space enough for every niche interest imaginable. I also believe that besides connecting with other people, the internet can assist minority groups in advocating for themselves, as happened with protesting the Ransom Notes campaign.

But I also think that the internet has its limitations in effecting change in socieatal attitudes and laws. My personal feeling is that the internet is one tool in a big handbag of ways that can be utilized to change opinions. Should we utilize the internet? You betcha. But I also think that we should also pursue other avenues whenever they present themselves, as well as combine the internet with other methods to gain greater influence than either method might obtain by itself.

The other day I blogged how Ange Hemmer is working to change practices in Missouri schools. She has used the internet to gather parent testimony, but she has also spent countless hours on the phone and in person talking to legislators, state advocates, and reporters, generating several stories in the media that have probably gotten at least some people to reconsider their inner feelings regarding those who are different in society. She's even starting to get some results.

Today I'd like to highlight a young autistic filmmaker named Drew, who's film, "Treasure Diversity" is being screened at the Beloit International Film Festival.

Though the film is only 10 minutes long, the film festivals executive director, Rob Beaudoin said "There is a magic to this film that caused me to think differently about people and about life." After viewing the trailer, I am sure that his reaction is not unique. In addition to being screened at BIFF, Drew's film has been screened not only at other US film festivals, but also festivals as far away as Australia. Not too shabby for a 12 year old kid. His 10 minute movie has the potential to reach thousands, if not tens of thousands of people.

I think we all need to look for opportunities to make a difference in other people's attitudes. We might not be filmmakers, or be able to make the time to travel to our state capitals to lobby legislators, but we all can take the time to write our lawmakers and let them know how we feel, as well as educate people we come into contact with every day. Even if it's not 10 minutes, even 1 or 2 minutes add up over time.

Fighting Restraints and Seclusion

Blogger Ange at http://nomoseclusion.blogspot.com/ has been waging a quiet, persistent campaign against the use of restraints and seclusions in Missouri schools. She's been gathering accounts of children's experiences when put into seclusion rooms in schools, and the people at the Misssouri
Protection and Advocacy Services have taken an interest in this cause. She's also traveled to the state capital to testify regarding pending legislation that would shield teachers from prosecution when they get physical with kids in school.

This week her efforts have really paid off, as she's gotten media attention. Two television stations have aired stories on this this week (one of them on two successive nights), and a popular local radio call in show also took on the topic today.

The local NBC affiliate story can be found here. Do drop by and (respectfully) let them know that it's just not right.

And if you see Ange around here, remember to thank her.

Kathleen Slapped-Blogs Slap Back

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I had heard of SLAPP suits (Strategic Lawsuit Against Public Participation) before in the context of lawsuits against environmental groups, but had never really paid much attention to them. Evidently the whole purpose of them is to harass people who are speaking out by costing them great deals of money to defend themselves.

I'm sure that most everyone has heard about the ridiculous subpoena that Kathleen Seidel has been served with. While it appears that she has not been sued, this subpoena is pretty much an all encompassing fishing expedition meant to pursue one purpose, and one alone-silencing Kathleen Seidel.

No one could reasonably believe that there was some grand conspiracy that involved paying off Kathleen to write her blog on neurodiversity.com. I do not know Kathleen personally, but there is absolutely no indication that she is being put up to write the things she does. How do I know this? Because there is no way anyone could ever write so elegantly, so powerfully, and so honestly if they were being paid.

Paid product pushers and plants on blogs make themselves known over time. They can't help themselves. They post obviously false things that support certain products or positions, in contradiction to all the evidence that there is to be found.

Kathleen is the polar opposite of someone who is paid to write from a certain perspective. When I found out that there was a name for why my son was having so much difficulty with peers and at home, and that that name was autism, I went searching for information on the web. I first found a local listserve where parents had an ongoing pity party, and most were in search of a holy grail cure. I continued to search, and rapidly came across three different sites on the web that greatly influenced me. These were Kristina Chew's AutismVox, The Autism Hub, and Neurodiversity.com. I loved these sites for different reasons. Kristina for her personal touch, The Hub for its diversity of opinions, and neurodiversity.com for its obviously well researched list of resources and readings on autism. I spent days delving through the articles and resources linked from the site. I felt like I had discovered a cave full of jewels, and I marveled how each one of them sparkled as it was held up to the light. Such sites are not put together by those who are paid to push a certain viewpoint (If she were being paid, there would be much less content, and a lot more "splash" to the site). The beauty of neurodiversity.com is in the layers upon layers of painstaking research that went into putting it all together.

Kathleen's blog has always been top notch. She doesn't push vague conspiracy theories with no facts behind them. Instead she publishes extremely well researched, well annotated (a rarity on the web), and well written treatises on subjects related to autism. A victim of her own success, the existence of this precedent setting subpoena speaks to how well Kathleen's voice is being heard. Evidently she must be silenced.

Many bloggers have stepped up to symbolically link arms with Kathleen. In whatever small way I can, I am proud to join them. Kathleen's voice is one that we cannot allow to be silenced.

Many (including probably myself) would have been intimidated by such harassment. To her credit, Kathleen didn't even flinch, and has fired back a motion to quash the subpoena. You go, girl. They've SLAPPED the wrong woman.

No More Silence

I'm a get along kind of guy. I like to build concensus, and not rock the boat too much. I like to keep my mind open to different opinions, and different ways of doing things. But sometimes you have to draw a line in the sand.

Twenty years ago, the gay community was beseiged by a disease that was killing them off, and no one seemed to care. Several people in the gay community in New York came up with the "Silence=Death" campaign. It was a simple campaign to raise awareness amongst all of society of what was happening. They didn't have the internet, so they plastered posters all over town looking much like the one above.

I believe that the autism community is under a somewhat similar (though not yet as devastating) onslaught in this day and age. There are two main things that I see that are killing autistics. One is the physical and psychological abuse that is going on in institutions (and sometimes openly in society). The other is subjecting autistics to experimental treatments that have no scientific proof, and have killed people that were being treated. The biggest offender in this category is chelation (now sometimes referred to as "detoxification").

While I still respect any parent that respects and loves their child and is just trying to get the best interventions for them, I can no longer stay silent when they mention chelation as a possible option as treatment. Sometimes in the past I have not been as vocal as I should have been in informing them of the hazards of chelation. At the risk of losing friends, and of getting tossed off one local message board I am on, I can stay silent no longer.

Description of deaths from chelation can be found here and here. A good discussion of a 5 year old autistic child's death from chelation can be found on Kevin Leitch's blog here.

We have this great disseminator of information, the internet. I resolve to respond whenever I come across potentially dangerous practices. Not to denigrate the individuals involved, or to espouse one way of doing things over another. But to save lives. Period. And I encourage all of you to do the same.