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Thursday, July 10, 2014

Presume Competence and the Failure of Education

When I see a person with an obvious disability I always react the same way: There goes a hard ass who has somehow acquired a disability and has adapted. Some people adapt and thrive others struggle for years. Some will never be autonomous and yet with appropriate social support lead a good life. My reaction to the presence of a person with a disability is well out of the norm. What the vast majority of people think is basic and wrong. Disability is bad. Disability diminishes quality of life. Disability prevents people from walking, seeing, hearing, etc and this precludes a rewarding life.  The focus is never on what can a person with a disability can do but rather all they cannot. This line of thinking makes me shake my head in wonder. How can people be so shockingly stupid.

The assumption people with a disability are incompetent and lead a severely diminished life has been questioned by many scholars--especially by those whose work centers around disability and its social impact on people. To the best of my knowledge Douglas Biklin was the first or among the first to use the phrase "presume competence". This phrase has been at the forefront of my mind for the last year or more because I think it applies to all people with a disability. In a 2012 interview with Biklin he was asked to explain the concept of presume competence". Link: He stated:

The principle of “presuming competence,” is simply to act as Anne Sullivan did.  Assume that a child has intellectual ability, provide opportunities to be exposed to learning, assume the child wants to learn and assert him or herself in the world. To not presume competence is to assume that some individuals cannot learn, develop, or participate in the world.  Presuming competence is nothing less than a Hippocratic oath for educators. It is a framework that says, approach each child as wanting to be fully included, wanting acceptance and appreciation, wanting to learn, wanting to be heard, wanting to contribute.  By presuming competence, educators place the burden on themselves to come up with ever more creative, innovative ways for individuals to learn.  The question is no longer who can be included or who can learn, but how can we achieve inclusive education.  We begin by presuming competence.

I love the fact Biklin considers presume competence to be the Hippocratic Oath of educators. Sadly, precious few educators share Biklin's belief. It is not just educators who fail to see the many ways people with a disability are competent. Health care professionals and most industries are woefully ignorant about disability and what people with a disability are capable of doing. Physicians, for example, observe pathology first and foremost. Administrators in health care bemoan the cost of caring for the disabled or atypical body. Industrialists refuse to hire people who have a disability. Educators simply do not want to deal with students who do not learn at the prescribed rate. Worse, educators simply lack any imagination when it comes to educating a student that learns differently. Educators teach students to take and pass tests. Tests in secondary education define success.  The business model of education reigns supreme. 

The fact educators fail to focus on what students with a disability can do is a colossal social failure. I observed this raising my son who went to so called blue ribbon schools in New York with sterling reputations. I was bitterly disappointed with what I saw of the secondary school system. The secondary school system nation wide is populated by caring and dedicated professionals who are trapped in a system that is hopelessly flawed.  The educational system is inadvertently destroying the aspirations of atypical students. There is a reason students and adults with a disability feel alienated.  Too few educators presume competence. What educators see is a problem. Students that are atypical are quickly shunted into "special education"--a term I despise. Atypical students and adults with a disability are not "special" but rather merely different.  Special implies an unfair advantage is being given to those who are atypical. This rankles people and undermines what Americans are taught and cherish--all people are equal. Let me tell you I have not been equal since the day I began using a wheelchair. I do not accept a diminished social standing nor the stigma associated with disability and the atypical body. This does not make me popular. Indeed, three subjects I write about routinely generate a flurry of nasty email and comments. First, my opposition to assisted suicide legislation. Second, my opposition to growth attenuation. Third, my stinging critique of the cure industry typified by the exoskeleton. 

There are many great things about blogs and I am particularly drawn to others who like me me push back when confronted with ableist assumptions about disability. Narrow minded and unintentionally destructive ideas dominate education. I observe bias in the university system. I have heard more than one professorial colleague bitterly complain about reasonable accommodations they are forced to make. Extra test time! "I never got extra time" professors proclaim. "This is an unfair advantage". The campus is "over run with students with learning disabilities" is another line I hear often. When I quietly note those pesky expensive elevators and autonomic door openers abound I am told that is completely different.  Such an observation usually ends any discussion because my views are obviously clouded by my disability. When I have such an exchange it reinforces why so few students with a disability get into college and an even smaller number are able to graduate.  The educational system is flawed from start to finish. Given this viewpoint, I read many blogs and scholarly articles about the secondary school system. It is the blogs though that resonate with me. I am not alone. By itself this is gratifying. One blog I read regularly, Star in Her Eye, is written by Heather Kirn Lanier. Link: Yesterday Kirn Lanier wrote a post "We're Presuming Competence". This is not the best title. Kirn Lanier insightfully demonstrates the majority of those charged with educating her daughter do not presume competence. What educators see is what her daughter cannot do. The educator that presumes competence is a rarity.  Kirn Lanier wrote: 

If you spend a few years working with special educators and therapists, as we have, and then meet someone who greets your daughter with this presume competence attitude, you realize how radical and rare it is. A year and a half ago, I asked an early interventionist to help us with the significant gap in Fiona’s expressive and receptive communication. As you might know, Fiona is nonverbal. Her expressive communication is limited to pointing, eye contact, facial expressions, maybe twenty rough signs, and a thousand ways to intone her only sounds: mm, um, and hum. But she understands a thousand times more. So I asked her early interventionist to help me create a picture system for Fiona, one where she could point to pictures to express her wants and needs. The therapist was initially enthusiastic, but eventually thought Fiona wasn’t a good candidate. She thought Fiona would “stim” on the picture cards (at the time, Fiona loved to hold cards and tap them against the palm of her hand.) The therapist encouraged a few signs, but didn’t provide much else in the way of augmentative and adaptive communication. Nine months went by. Meanwhile, Fiona just kept learning more and more vocabulary, without the ability to express it herself.
This is an educational and social failure that is shockingly routine--the norm even. While I am spending most of this post blasting the educational system there are educators who get it--those who presume competence.  Kirn Lanier wrote about such an educator: 

She was the first expert I’d met who’d held such a long, wide, generous view of my daughter’s capabilities. So I listened intently to everything the expert said. I listened when she told me that Fiona and I needed a shared language, one that would enable robust, creative expression. (“Right now, you don’t have a shared language,” she said, a sentence that was both true and heartbreaking.) I listened when this woman told me that we needed to offer Fiona multiple parts of speech rather than just a list of nouns, so she could do more than make requests and identify objects. I listened when this woman believed we needed a system with voice output, so Fiona could touch a button and a computer could speak a word. I listened when this woman told me she really, truly believed Fiona could handle something much more complicated than a few dozen picture cards on strips of Velcro (which by that point the early interventionist had provided.)

When I read Kirn Lanier's post I thought about the bipedal hordes that surround me on a daily basis. What most see is my wheelchair. Life in a wheelchair must suck. Being paralyzed must be horrible. I would rather die than use a wheelchair. Many assume I have a cognitive and physical disability. Almost all assume I am not employed. Most presume I have great health care coverage and spend most of life searching for a cure to paralysis. How do I know this is the way bipedal people think? This information is freely shared with me by ignorant bigots coast to coast.  To me, what is at issue is a human rights crisis no one wants to talk about or even acknowledge exists. In Kirn Lanier's experience as a parent she has had to fight to give her daughter Fiona language. I am outraged as a result. In my case I have had to fight for physical access to our social environment. I have had to fight for my humanity as has every person with a disability who rejects ableist assumptions.  The fight for equality has played a prominent role in my life. It has made me hard. It has made me radical. It has made me question everything I was taught as a child. I question the status quo at all times. It has drawn me to previous civil rights movements. It inspired me to read the work of Marx and Engels. It caused a visceral reaction when I read the Communist Manifesto the first time in college. To this day when I read the famous opening and closing lines of the Communist Manifesto I am hooked. A "spectre is haunting" American society. "Working men of all countries, Unite!" I reinterpret those words to mean the spectra of ableism is haunting people with a disability and we must all unite. I just hope to live to see the day when people with a disability stop bickering among themselves and unite with all other oppressed minority groups.  Then and only then will I along with millions of other people with a disability truly be equal.