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Tuesday, June 22, 2010

Education and Disability: Barriers, Barriers, and More Barriers

Over the weekend I read a long article that was accompanied by a slide show in the New York Times education section. The article, "A Struggle to Educate the Severely Disabled" by Sharon Otterman left me somewhat angry and deeply annoyed. When I calmed down I was not angry or annoyed but depressed. Profoundly depressed. The focus of the story was characterized by a unrelenting negativity. Nothing positive was mentioned about the life and education of students with what are characterized as "multiple disabilities". This term is a veritable garbage can used to classify a small fraction of students. The article makes it clear these students are costly and not well served by our current educational system. The reasons for this failure are complex and hinted at only in passing. Instead, the article questions the value of educating students with multiple disabilities and despite its length comes across quite superficial. What does resonate are multiple negative comments or assessments that could easily lead some to conclude a great deal of money is being wasted on students with multiple disabilities. For instance, one student, Donovan Forde, is discussed throughout the article and used by the author to hook the reader in. According to Otterman,

"After 15 years in the New York City school system, he is less reserved and more social, but otherwise has shown almost no progress".
"On standardized assessments he has trouble with tasks most children master in infancy"
"Educating Donovan remains a search for ways to reach him":
"Donovan's communications are hard to measure on assessments".
"One morning in mid-March, there was an accomplishment".
Ms. Mack who worked with Donovan for two years stated "I don't think he appreciates getting an education".

Based on the many comments posted by the New York Times educating students like Donovan is a waste of time, energy and siphons funds from "normal students". Such remarks I consider bigoted at worst or poorly chosen at best dominate the comments section and are as striking as the overwhelming negative tone of the article. The subtext clearly questions if students with multiple disabilities are worth educating. This is based on the premise that a valuable education, one worth funding, is to produce independent autonomous people capable of making a contribution to society---that is becoming employed. If this is not possible then the value of the education received is open to debate. Given this philosophical underpinning, Otterman is free to characterize students with multiple disabilities in the worst possible light. I will refrain from citing the most objectionable or unnecessary statements that dehumanized students. Instead I will focus on the more subtle comments. For example:

"Aides lift another student, Darius Jenkins, 15, out of his wheelchair and place him on an inclined plane, where he lies quivering and drooling slightly for most of the class. He is given a squeeze ball to hold several times, but each time, he drops it". I am sure the description is accurate but its tone objectionable. What if I described a so called "normal child" in first grade as follows: "Mary is constantly distracted. She cannot recognize her letters or read a single word. She picks her nose instead of following the book being read in class". If I were a parent I would not be happy with either of the above assessments.

What is very clear is that to educate students with multiple disabilities is very expensive--"they are the most costly to educate and least understood". According to Otterman "in 2009 the cost per student was $58,877, more than triple the citywide average of $17,696". Nationwide there are apparently 132,000 students with multiple disabilities out of the 6.5 million receiving some sort of "special education"at a cost of $74 billion a year. Much money is being spent but is it being spent widely? Here is where I agree with Otterman that the educational system for students with multiple disabilities is flawed. The system we have in place is failing students like Donovan mentioned above. IDEA, Individual with Disabilities Education Act, is part of the problem--it is not well suited for students with multiple disabilities. These students it seems to me thrive when given experiential and sensorial stimulation. The academic component of their education, though important, needs to be considered in a broader context. It is hard for any person to learn if they are physically uncomfortable and tense. Hence physical, occupational, and speech therapy are critically important as is adaptive physical education and recreation. The goals of educating students with multiple disabilities also needs to be reconsidered. Independence may not be possible but that does not mean an education lacks value or importance. This is where the real problem lies--educating students like Donovan is not valued. What is the point many wonder? Why spend so much money on a student with such limited communication?

The answer to the above question is glossed over as is its importance. Since 1975 all children in America are guaranteed a free public education. That is all children, those with and without a disability, have the right to an education. Let me put this in perspective. If I became disabled three years earlier than I did the public school I attended would have had the legal right to bar me from receiving an education. Thus I consider myself lucky. I was among the first Americans with a disability to be educated and escape institutional life. Sadly, this is exactly what happened to hundreds of thousands of people with a disability and an untold number of lives were destroyed. People with disabilities were shipped off to institutions with the encouragement of doctors, social workers, educators, priests, rabbis, and other professionals. It was thought to be the right thing to do. While not all institutions were like the notorious Willowbrook, institutional life should be perceived as a measure of last resort. Many other viable alternatives should exist--here I refer to group homes, day programs, and other residential adaptations. Today parents are often forced to institutionalize their children--people like Donovan.

Perhaps the skeptic reading this post is thinking I am confusing two different populations: those students with a cognitive disability as opposed to a physical disability. I see no difference culturally. The opposition I have encountered in my efforts to receive an education were significant. The only reason ramps and elevators are supposed to be the norm today is because disability advocates fought for them with vigor. Laws were passed and educational institutions begrudgingly provided access. Problems still abound decades later. As a father instead of student I would characterize my son's public school as hostile to students with a disability and my crippled existence. I have precious few allies and most parents, given tight budgets, would happily choose to do away with special education so more money can be spent on their "normal" children. This is an old story that is played out in my son's school as well as in Donovan's school. The people that spend the vast majority of time with students with disabilities are not so called "special eduction teachers but teacher aides. Aides come and go, receive no training and are among the lowest paid people in the school system. No wonder students with multiple disabilities do not receive more therapy--those employees earn to much.

Otterman wrote just one thing that struck a positive chord with me-"students like Donovan do not fit neatly into the paradigm for special education that has prevailed in the United States for more than a decade: inclusion. Congress ranks each state for its success in moving special education children into general education classes, addressing a core concern in the field--that too many children are not getting access to the regular curriculum". This begs the question of what happens to students that will not benefit from the "regular curriculum"? As already stated, I believe their presence is not wanted, their education flawed, and worst of all not valued. Such students are capable of learning and have the right to learn. Much depends upon how we define and perceive education. I can offer no ready solutions to the issues and problems I have addressed. However, I would suggest how we educate those students with multiple disabilities speaks volumes about who we are as people. Historically and to date we have as Americans have done an abysmal job in this endeavor. I know this for a fact and I suspect people like Donovan are aware of this at some level too.


Elizabeth said...

Bravo. Thank you for posting this. I read the article and have been dragging around all week, thinking about it, feeling depressed about it and, for once, silenced about it. While I normally am a vociferous person with lots of energy, this one just about did me in. The only thing I can muster is a half-assed comment like "what sort of value is the CEO of BP providing to our world?"

emma said...

Good post.
The history of "special education" is very short, it has a long way to go.

Society and beliefs about education have changed a lot in general, finding "the right way to teach" is still a question for all students. It's far too early to be giving up on educating children with multiple disabilities claiming it't too expensive. Mistakes have been made and will continue to be made, using those mistakes to make a better system of education is required.

william Peace said...

Elizabeth, The article was all doom and gloom. I don't know how the reporter failed to appreciate the unique contribution people with multiple disabilities make. It was so one sided I took a few days to settle down so I could write a proper reply.
Emma, I truly wish we could do away with the term "special education". The idea of "special" treatment or education is contrary to what Americans are taught and flies in the face of cultural ideals. Any person deemed special is resented as we are all supposed to be equal. A radical overhaul of our educational system is needed. The business model Bush put in place has created a decade of students that are skilled at passing tests but cannot think independently. We need to acknowledge and develop the skills students with multiple disabilities possess and not be concerned with traditional modes of learning.

emma said...

I don't like "special education" either, the way I hear some people use the word special is so patronizing it just sticks in my throat.

I'm not sure what the business model is in the U.S. but I'm fully aware that education done on the cheap here has meant children are learning parrot fashion reams of text and learning to provide the "correct" answers without ever learning to think for themselves. I was quite shocked to discover this, Greece being the cradle of civilization and all that. But apparently people are more interested in getting the grades to attend university, just for the sake of attending (big parental pressure).

I hope I don't see another article like this NYT one for a long time, it just reinforces negative stereotypes and does nothing towards understanding, awareness or integration.

Becs said...

It's a good thing Jean-Dominique Bauby learned how to read and write before he had that brain stem stroke.

william Peace said...

Becs, OUCH! Great comment. The animosity directed at students with complex disabilities today is shocking. Bigotry is alive and well. But if I can note one goof thing it is that parents of children with profound disabilities are in some cases fierce advocates.

Anonymous said...

I have a severely handicapped daughter who does not have any physical handicaps, just mental. She operates at about the level of a two year old. Inclusion was a nightmare for her. She can't cope with change. She thrives in a segregated program and her learning goals usually involve toileting and social skills. Her teachers and aides are amazing people.

william Peace said...

Deb, Inclusion is not the monolithic success many think it is. Your daughter's success and happiness in a segregated program is evidence of this fact. I am glad she has great student aides too. You and she are lucky. I wish more parents would have the same experience.

Becs said...
This comment has been removed by the author.