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Wednesday, June 23, 2010

We are Working Hard: Reality is Different

If there is one thing I do not have the patience for it is what I call being stroked. People with a disability will know what I am referring to. You arrive at a building and access is limited and there is no accessible bathroom. You find out who is responsible for making the facility accessible and are told the problem is being worked on. This person assures you with great sincerity that access is very important. You are told that "they are working hard on the problem". Fast forward two years, three years or five years later and the problem is still being worked on. Yes, they are working very hard--they are working very hard to con people with a disability and lead you to believe access is a priority. If you believe any person that tells you they are "working hard" on the issue of access than I have a bridge for sale in Brooklyn. What they want is for your crippled ass to go away and never come back. You my friend are not a priority. If you were access issues would be resolved promptly.

The above thoughts came to me as I read an article about how captions are coming--slowly--to internet sites. Closed captioning is mandatory on television but not for programing on the internet. Thus I thought of the actress Marlee Matlin. A truly beautiful woman who two years ago made a short lived splash as a deaf person on the show Dancing with the Stars. Viewers were amazed a deaf person could dance. How inspiring! Spare me! At the time Matlin appeared on the show she was assured that ABC was working hard on the problem of captioning. Fast forward two years later and is still working on the problem of captioning on the internet. Two years. In terms of internet technology two years is an eternity. Anyone who purchases a computer knows the machine they purchase is obsolete within months and two years for some is the expected life expectancy of a machine. So, why is ABC still working hard on the problem? The answer is simple: captioning is not a priority. ABC does not care. If I have learned one thing after thirty years of using a wheelchair it is that social and architectural change only comes with a fight. ABC and popular websites such as Hulu, You Tube, Netflix among many others have failed to value captioning. It should be included as part of every single video posted on line. I do not think this is an unreasonable expectation. Every new building constructed is supposed to be accessible. Why not make every new video posted starting tomorrow have captioning. I can just hear the howls of protest. I am being unreasonable. My request, not the word here, request, is impossible to achieve immediately. I am told we need time to work on the problem of captioning. Exactly how much time does ABC need and who is working on the problem? How many hours are spent per day and how many individual have been assigned to the task? Answers to these questions will never be revealed because they would demonstrate the time and energy spent on the problem are negligible. This is infuriating. I would rather be told the truth than lied to and mislead. But lies are the norm as are misleading statements. Hence when I am told someone is working on the problem of access I translate this to mean two things: first, I should go away and never come back; second, no one is really working on the problem. The only way to change this cultural response, that is force people not to blow you off with false promises is to fight--make a stink, threaten a law suit, garner bad publicity etc. Being patient does not work. Exceptions do exist but they are rare and noteworthy. The norm is resistance. Afterall, do you really believe it takes ABC more than two years to solve the problem of captioning?

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.