The debate between the “social” v. “medical” models of "disability" are endless and ongoing. This is often seen most clearly when international, or intercultural comparative studies are done. In the case of the ADHD study comparing Sweden and the US, the sharp differences in the number of children seen as having “a medical disability” (and thus needing medication for “symptoms”) in the two-nation study demonstrates both sides of the debate. Across cultures we see the “differences” and yet, across cultures, we operate very differently.
One of the things which began troubling the Disability Rights/Disability Studies movement in the mid-1990s was the question of “the body” in the social model of disability. This first emerged as the Queer Studies movement’s thoughts (see Judith Butler) began being heard within Disability Studies, and was amplified by Deaf Community Activists who made their physical/sensory differences the heart of their culture. “Where is the body [in disability theory?” asked both Tom Shakespeare and Michael Oliver.
In this question I think of Michel Foucault, who, according to my favorite Foucault scholar, wanted to investigate not identity, and not causes, but the movements - the acts - we make in the "spaces" between us when we interact. “Don’t look behind the text,” he suggested, look at what people are “doing.”
So, beginning in the mid-1990s Tom Shakespeare joined the social model of disability to the body directly, yet without resorting to the medical model. He wrote about disability occurring at the "intersections" - the "places" where our bodily capabilities meet the world "as it exists."
Last year, a Twitter-pal with a visually impaired child made this very clear to me when she wrote: "Going to get son to walk around lake with me in the dark - he won't need his cane, but I'll need flashlight."
Transactional Disability
Somewhere between "the medical model" - difference described as a medical illness the way North Americans do - "a person with cancer" "a person with a reading disability" - and the "social model" - difference described as only a problem created by societal norms, lies what I have begun calling "the transactional model." Yes, we are all different in various ways, including our set of capabilities. But these differences only become "impairments" when we - the differently capable - find that we cannot negotiate the world, or a specific corner of the world, the way others have set it up.
I may not be disabled when I watch a movie. Nor when I watch television, listen to the radio, listen to a friend or a teacher, listen to music, look at art. In fact, I think my capabilities are at least "average" or better when I meet these tasks. I become disabled when people choose, instead, to present information in alphabetical code. Those former information transfer systems I can navigate with ease. The alphabetical code leaves me tripping over myself. There is nothing "wrong" with me, nor is there anything wrong with the alphabetical code - the problem occurs in the transaction space - where print and I meet.
Similarly, I am fairly short. This is not a problem in most things, but at the grocery store, top shelf items are out of my reach. Thus, my height becomes a disability. At Aldi (no shelving units) this is not a problem. At typical Walmarts (very high top shelves) it is a big problem. Now, how do I deal with this?
One way is for me to climb the shelves to get what I want. I actually have done this many times. It gets you yelled at, as many of the ways kids cope in school gets them “yelled at” or much worse. (One group of university researchers suggested about 10-years-ago that Nicotine and THC were one excellent way to reduce the tensions related to ADHD (here’s one article) which may explain much of the ‘self-medication’ you see in secondary schools.) Another way is to wait and ask for help, but I think this diminishes me as a “whole human,” and over time saps my initiative and any sense of independence. But what if there were step ladders in each aisle, something library stacks often have? That tiny shift in the “transaction space” might eliminate “my height disability.”
The challenges of wheelchair shopping
However, this winter I have been in a wheelchair. This physical reality changes things in important ways. I can’t, for example, get into the MSU police building without help to buy a parking pass (just had to throw that in). But back to the grocery store: So now, Aldi is hard, but Meijer and Walmart become impossible. 90% of items are out of reach, and the cool stuff, “gourmet” cheeses, etc, and many fresh vegetables are completely out of reach, and sometimes out of sight. No step stool will solve this – perhaps an old fashioned “grocery grabber” hung in each aisle might help – but large parts of the store would need to be completely re-conceived to make independent shopping possible for me.
However, where (and when) I grew up, grocery stores were different. The clerks stood or sat behind a counter. You went in, handed them a list or told them what you needed, and they went back to the shelves and got your order. Or you could ring them, and they would get your groceries and deliver them. This was also true of the butcher and the green grocer and the pharmacist. In fact, one of my first jobs was delivering prescriptions, and as part of that I would go into the customer’s kitchen, and if they had arthritis or a broken arm, I would open the childproof cap for them.
In that world, the wheelchair was much less of a disability while shopping. Same physical facts, different transaction space, different result.
So there is no doubt that the mother and son in the Tweet at the top have actual capability differences. Their vision capability difference is not merely a trick of societal construction. Yet there is nothing "wrong" with either. This need not be a "diagnosis." As the mother knows, the description of "disability" changes as the light does - thus it changes as the seasons change - and changes as the location changes. Walking around the lake in the dark she needs Assistive Technology, her flashlight, while he needs none. Moving across a street in the daylight, he may need supports, and she not.
This is important. I really believe it is. Right now we describe both the son above and myself in pathological terms. There is something "wrong" with us. But who decides that? That is society abusing some to raise up the power of others. The person who can't translate a construction document goes through much of their life without problem. But when they end up with a pillar in the middle of their office (I actually saw this almost happen) they are having a "transactional" problem – we need not label them "a person with a construction plan disability." The person who cannot find their way around the NYC subway system is not described as having a “directional disability,” instead we put up maps for everyone to use.
Changing the transaction space in the classroom
Which brings us to the classroom. Consider the child who is "fine" until you ask him to sit in a chair for an hour. Is he disabled? Must he be diagnosed? There's nothing inherently wrong with the chair or the child, just what happens when they meet. Alter the transaction space, or the rules of the transaction space, and the facts of the "disability," the actions of the “disability,” may not exist.
The child who can not decode alphabetic text, Is she disabled? Must she be diagnosed? What if she can understand and work with any information given to her auditorally? There is nothing wrong with alphabetic text, or the child. But the transaction as defined by the "space" - the teacher handing her the book - is failing. Text-To-Speech software and audiobooks might change that space, and that failure may not exist.
I once sat in an IEP for a fourth grader labeled ADHD and EI. “He does really badly on all of our timed math quizzes,” the teacher said, “he gets all nervous and then starts acting out.”
“How does he do if the quiz is untimed?” I asked. “They’re all timed,” she told me, “all the kids like to race.” “Well, not all,” I muttered.
So, a student with, perhaps, a definable brain difference. And a transaction space designed for other types of people. And the result is “disability.” We moved this child to another school with a Montessori type program. I checked in after his first week. The teacher came and met me in the hall. “You said he had IEPs at [x],” she said, “why?”
Change the space, the transactional area is altered, and thus the actions themselves are altered. If we follow Foucault's dictum and, as this new teacher did, and refuse to look "behind the text" - refuse to see anything but how the student is acting/functioning now, the disability has become non-existent. It has not just vanished - it has never existed in this new space.
- Ira Socol
Outstanding and thought-provoking as always, Ira. Where is the disability? Too often when we speak about public education, it's in the curriculum and the way it is presented and how we ask students to demonstrate what they know.
ReplyDeleteWhen students are referred to me for an AT assessment, my first two questions to parents are what are their strengths and what is it that is difficult for them to do? If we start from a strengths model, we can overcome a great deal and build upon the strengths for success.
Thank you for always getting us thinking and challenging the status quo.
All disabilities -- and for that matter, all abilities -- are social constructs. Each exists in the interstice of individual and environment and is depended on societal expectations and definitions of some norm.
ReplyDeleteThere is a funny Ken Robinson clip on YouTube where he talks about the epidemic of ADHD and doling out pills like candy to treat it.
ReplyDeleteHe says years ago, we didn't know we could have ADHD, it wasn't an option. But back then we had a similar epidemic with tonsillitis. It used to be, every kid who had a sore throat had to get his tonsils removed. Nowadays, it's a rare thing to get your tonsils out. His point is that we tend to seek out, diagnose and treat whatever happens to be in vogue at the moment.
It's too bad that we always have to hang labels on people. It's so limiting, and disrespectful of individual differences.