What Special Ed Says About Our Society

Just ten years ago and maybe even less, it would not have been possible for my son to receive the education that he is getting through the public schools, and that has made his life as it is now---trekking through a couple of towns around a bike with his dad, walking around the West Side of Manhattan with us, carrying the basket while we shop at the local grocery store (let me tell you, it's a fine thing to have someone who can help me shoulder the load). We've a long way to go to provide him and individuals on the autism spectrum with all that they need throughout their lives, but I'm hopeful, however uphill the road may be.

Today's New York Times reports about the struggles of parents to secure an appropriate placement for their child, and the push and pull with school districts (which is New York City in this case):

Of the more than 6,800 children with autism recorded by the city’s public schools, 4,200 are enrolled in special education classes with a small student-to-teacher to ratio, 285 students are part of a program where children with autism are taught alongside regular education students and 28 are in a charter school with a one-to-one ratio between teachers and students. That school, the New York Center for Autism Charter School, is the only public school in New York City offering intensive one-on-one instruction.

Other autistic students attend private schools from a list of those approved by the state, and their tuition, which ranges from $30,800 to $48,100, is paid by the city’s Education Department. Finally, if parents are dissatisfied with any of the options offered by the public schools, they can choose another private school, one not on the list, at their own expense and seek to have the cost reimbursed by the city.

For all special education students, the department paid $88.9 million for private school tuition last year, compared with $57.6 million in 2007. “Private school tuition claims are a growing burden for us,” said Michael Best, the Education Department’s general counsel.

The fact that Charlie is being educated in a public school says to us that at some part of our society thinks it's worth it to teach him. There's plenty of people who grumble about paying higher taxes to support the school district and other public services in our torn, but there's also someone (or someones) who think it's (what a shocking notion) better that we educate kids like Charlie in ways in which they actually learn so that they can lead full and productive lives with jobs and in the community, rather than being hidden away.

Reading about an exhibit at Stony Brook University in Long Island about the Nazis' War on the 'genetically unfit' makes me more than shudder.

The exhibit was reviewed in the April 12th New York Times and just reading about it is chilling:

Besides the extent of Nazi mutilation and murder, “it’s also surprising how accepted it was by the medical establishment in Germany,” said Jack Coulehan, a Stony Brook professor emeritus who still teaches medical ethics and was involved in bringing the exhibition to the university. “These were all doctors who had devoted their lives to healing,” Dr. Coulehan said as he walked through the display, which includes photos, explanatory texts, excerpts from Nazi literature and eight screens showing Nazi propaganda films with English subtitles and other footage.

One film shows people in asylums, while a voiceover says that the money spent on them could be better used elsewhere. A wall of photographs focuses on 8 of the 5,000 children killed by injection or starvation. Another film features interviews with Jewish survivors, including victims of Nazi experiments on twins.

“The goal of human enhancement and ‘perfectibility’ is still alive,” said Stephen G. Post, director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook, who organized the exhibition’s visit and the lecture series, which he plans to collect in a book.....

One thing for people to complain about how it costs the school district more to educate Charlie than the average student; I did once hear someone question why are we paying more for special ed kids who aren't going to do "great things" like go to Harvard, cure incurable diseases, "make a real difference." But the thought of Charlie being considered "mentally defective" and subjected to treatment for which "inhumane" is a kind word----subjected to experimental treatments----subjected to forced sterilization-----

And it's not that using those with intellectual/developmental disabilities as the subjects in experiments hasn't occurred more close to home. Some 35 years ago, secret scientific experiments were conducted on residents of Willowbrook State Institution on Staten Island. Individuals with disaibilities were "forced to drink milk shakes deliberately infected with live Hepatitis virus," as ABC news reported.

As Gil Eyal, a sociologist at Columbia University who has done research on autism, is quoted in today's New York Times:

“The crux of the matter is that we need to have a public debate about how much are we willing to invest in making individuals who are disabled, and sometimes profoundly disabled, have a meaningful level of membership in society."

And having that debate, and having it publicly, is a necessary step in ensuring that we make sure society knows that "individuals who are disabled, and sometimes profoundly disabled" must have their rights---in education, in crminal justice, in all areas---recognized by society.