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01/31/2015

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Thomas Nadelhoffer

Joseph,

Interesting post. I had some thoughts and a question. You state:

"It seems that the best practice of most major university disability services offices is to only consider requests for accommodations, no matter how minimal, after there is a confirmed medical diagnosis from a health practitioner that has documented the “functional limitations” of the disabled person. For a person starting a new job or new course schedule, this requirement of getting a medical evaluation poses a significant barrier to success that is not presented to a non-disabled academic or student."

You go on to state:

"Using medical experts as the gatekeepers of both social safety net benefits and civil rights is an attempt to avoid instances of 'fraud.'"

In the context of higher education, I take it the idea of fraud here is to be cashed out in terms of people who do not *really* have impairments fraudulently claiming they do in order to get accommodations they don't need--which in turn gives them an unfair advantage over both (a) those who have impairments and have accommodations, and (b) those who do not have impairments and do not have accommodations. Given the ubiquity these days of diagnoses of certain mental disorders such as ADD/ADHD, I think there is room for concern here. I also appreciate the worry you raise. My question to you is as follows: If you don't want medical professionals serving as the gatekeepers, what policy (or policies) would you put in place instead? Someone needs to be in charge of gate keeping lest those without impairments are able to get accommodations they don't need. If not the medical professionals, then who?

Marcus

Joseph, I was hoping you could say a little more about the claim "It is widely noted that the ADA is a civil rights law grounded in and justified by the social model of disability."
As someone growing up in an able-bodied home with a parent that worked almost exclusively with paraplegics and quadriplegics, we lobbied hard for the ADA. But I don't think we took it to capture the social model of disability. This is meant more of a criticism of us than the social model; such an idea wouldn't have even occurred to us at that time.

I'm particularly interested in that claim given the fact that the act itself defines the term "disability" with respect to an individual as "(A) a physical or mental impairment that substantially limits one or more major life activities of such individual."

Joe

Great Comments! First, I'll respond to Thomas on the issue of gate-keeping. One possible response to this problem of the gate-keeping of access is to pretty much remove the gate entirely via accommodating disability from the very beginning of the design process so that no adjustment needs to made via "accommodation." The concept of universal design is helpful here. While I don't think any design is truly universal and there will always be some need to accommodate, making this sort of effort on the front end of course design can be useful in that it can go a ways toward solving this issue of the tension between unfair advantage and inclusion that the reasonable accommodation method sets up. One simple example of how the Universal Design concept can be applied would be to give un-timed tests on an online platform outside of classroom time(I personally make my tests hard enough that everyone needs the extra time and the access to books/notes that a take home assessment offers, regardless of impairment). This works out well because it allows for more classroom time for lecture and discussion AND it means that I have never had to grant the reasonable accommodation of extra time because it's already built in. Thus, universal design has the potential to remove much of the unfair advantage gained from fraudulent claims. I also think its worth noting that, for many sorts of accommodations, there are no unfair advantages to be gained. For example, having an ASL interpreter in the classroom for a Deaf student or installing a mechanical door opener on the front of a building. To require gate-keeping for these sorts of claims seems to be more about disincentive and cost containment than it is matters of fairness.

Next, to clarify my point about the ADA and models of disability. You are correct, Marcus, that this tension between the medical and social model is embedded right in the language of the ADA itself. This definition of disability is exactly why the medicalization of accommodation plays out as it does in higher ed (but also everywhere, really). So, my claim that this tension exists in higher ed was not meant to imply that it ONLY exists in higher ed. There are instances I know of where employees have had to get a note from a physician to get an accommodation from the disability rights organization they work for. This problem is pervasive and its roots are found in how the definition of disability was operationalized in the ADA itself. Yet, I do want to stick to my claim that the ADA is, fundamentally, a Civil Rights law that looks to ameliorating the disadvantage of disability with changes to the social environment. Historically, we can look to some of the "founders" of the disability movement and how they quite deliberately developed and adopted the social model of disability as they worked toward the development and passage of the ADA (I am thinking specifically of Ed Roberts and Judy Heumann in 1970s Berkeley as described in Shapiro's wonderful book No Pity). Certainly, there is quite a bit written in philosophy of disability that links the ADA to the social model (Ron Amundson does this pretty explicitly but there are others as well; perhaps arguably Anita Silvers). At the end of the day, I don't think the ADA is "ideologically pure" in its adoption of the social model (most notably in its definition of who is disabled as your comments point out, but also in how it deploys the concept of "reasonable" as a check to what sorts of accommodations are required). However, it surely isn't rooted in the medical model either, so far as it even prescribes the use of social fixes at all.

Matthew

That's actually not the complete definition of "disability" contained in the ADA at all, Marcus. Here's the full text, available at http://www.ada.gov/pubs/adastatute08.htm#12102

"Sec. 12102. Definition of disability

As used in this chapter:

(1) Disability

The term "disability" means, with respect to an individual

(A) a physical or mental impairment that substantially limits one or more major life activities of such individual;

(B) a record of such an impairment; or

(C) BEING REGARDED AS HAVING SUCH AN IMPAIRMENT (as described in paragraph (3))." [emphasis mine]

Paragraph (3)(A) goes on to read:

"An individual meets the requirement of "being regarded as having such an impairment" if the individual establishes that he or she has been subjected to an action prohibited under this chapter because of an actual or perceived physical or mental impairment WHETHER OR NOT THE IMPAIRMENT LIMITS OR IS PERCEIVED TO LIMIT A MAJOR LIFE ACTIVITY." [again, emphasis mine]

Stating that being perceived by others as limited or impaired is itself a disability certainly sounds like the social model to me! People often overlook this third clause of the definition, but I don't think that makes the ADA any less of a civil rights law.

ajkreider

An interesting post and discussion. Thank you for that.

I'm thinking that fraud-prevention is only part of the story. As you mention, surely another is cost containment. I believe the initial impetus behind UD was that it be cost neutral, (in addition to the civil rights benefits). The idea envisioned a kind of not-yet-made world where we could start from scratch.

However almost all accommodations, reasonable or otherwise, will have costs attached the them. Universities, businesses and the like, having to deal with limited budgets and preexisting structures, will want to spend the minimum necessary for accommodation. And that may motivate the case by case evaluation.

The difficulties arise even in the case you mention. Leaving aside costs involved in training faculty in modes like online teaching, and those required for proctoring, (and the more general question of whether we would we want to make such teaching modes a condition of employment), there are other kinds of disability that would not obviously be accommodated (like vision impairment). Taking account of all disability would bankrupt many.

While the goal of UD is laudable, it is clearly long-term. And the case-by-case approach seems appropriate as a stop gap.

Ray Aldred

Hi Joseph,

There's quite a few things I can say here about this issue, and they aren't all related, so perhaps I'll break it up into a few points.

1. It's noteworthy that McGill University's disability services operates out of the social model, and was one of the first Universities that I attended that didn't require medical documentation from a medical professional. As such, medical professionals do not occupy the role of gatekeeper here. Yet, it seems that many of those persons with disabilities who need accommodation get it, and there are very few instances of so called "fraud," as best I can tell.

The way that it works is that the student books an appointment with a staff member at student services, where you meet and discuss accommodation and whether disability services can help meet those accommodation requests. A file is then kept on the student, and they usually get the accommodation they need. Given that some student services function well under the social model, without medical professionals keeping a gatekeeper role, you've got to wonder why people insist on having them fulfill that role. It certainly doesn't help the disabled students, since in places like Canada, you often have to pay an extra fee to see a doctor simply to fill out relevant forms. Perhaps acts to prevent disabled students from actually getting and maintaining the accommodation that they need. Or perhaps it's simply a remnant of the attitude that disabled persons aren't to be trusted, reinforcing distrust and segregation of disabled individuals that has been present in the past.

2. With regard to the different understandings and models of disabilities, I wonder if we can break down the claims a bit more here. For example, aren't there medical model theorists who don't understand disability as conceptually disadvantageous, yet still reduce disability to biological deviations (i.e. ignore social structures)?

Aren't there social model theorists who understand disability as including social factors that cause disability, yet they argue that these social factors that cause disability are disadvantageous? In other words, social factors exclude disabled individuals from participation and that's bad, but when we remove those social factors, then the individual not only has equal advantages as everyone else, but they also are not classified as disabled. In this case, "disability" is still tied to disadvantage, by definition, no?

Finally, there appear to be theorists that want to include social factors that causally construct disability, yet also want to include features of the biological body into their understanding of the body. What can we say about these individuals? Are they medical model theorists or social model theorists? Are they a weird hybrid of both?

Kevin Timpe

Joseph,

I've been doing some thinking about the medical vs social models debate, and will probably have a post on that topic in a week or so. At this point, I wonder if how that debate shakes out will depend largely on if we're talking about physical vs, say, cognitive disability.

And I wonder if some of what you're getting at your post might also depend on the kind of disability at issue. I share some of your general concerns, but I think that Thomas' are right too. I don't see how 'universal design' will help with cognitive disabilities, for instance.

Marcus

I want to be clear that I wasn't questioning that there are elements of the ADA that are consistent with the social model -- even within the definitions of disability. And I certainly wasn't questioning whether the ADA is a civil rights law nor was I arguing for the medical model. I was just pointing to one (particularly significant) example of what I take to be a tension between the medical and social model embedded in the ADA itself.

Because of these tensions, I believe that we are better served to look to the evolution of the implementation of the ADA rather than to try to see the social model as the true model at the heart of the ADA, somehow embedded in the law this whole time.

If we look to the advances that seem laudatory since the passage of the act, we will find changes that ameliorate the disadvantage of disability with changes to the social environment. Moreover, those laudatory changes aim to empower rather than to aid. (The implementation of the public transportation elements of the ADA are, I think, a poignant example here. The law was silent on nearly everything we take to be useful and just in this area. It was the implementation, and revisiting of the implementation, etc. etc. that really captured a social model).

Doing so would seem to dictate a narrative of capturing what is best in the act and advancing, rather than recapturing what has been lost.

But I don't take that to be a substantive difference about what ought to be done moving forward, merely one of tone (and one that I am wholly willing to grant may be an idiosyncratic preference and one that has many of its own drawbacks)

Joe

ajkreider, To be sure, UD is a long-term goal and I am not personally convinced that truly universal UD is achievable even in the long term (though new technology may make it more likely). I guess my point with raising UD is that it, in principle, gets around this need for accommodation at all and, thus, any form of gate-keeping. So, yes, cost containment is a major factor in motivating the medical-model gate-keeping practices. However, I would first point out that ANY sort of liberatory project is going to have costs associated with it. That's the very nature of oppression, someone benefits. Not to be too cliche, but when slavery ended, white landowners suffered a financial loss (note: the notion of white privilege highlights the myriad of ways in which all white people benefit from this legacy). "Costs," material and otherwise, can be identified for any sort of expansion of human social empowerment/inclusion (or animal, for that matter). So, just pointing out the cost exists is not enough. An argument needs to be made that the claim to inclusion is not a legitimate reason for incurring the social cost. In that case, you are not arguing for gate-keeping, but against disability rights. Even if we grant that costs are a legitimate concern, why look to the gate keeping of medical professionals as a cost-containment measure? Unless we are working through a medical model of disability, isn't a medical evaluation an arbitrary hoop to make someone jump through in the name of cost containment? Why not create other disincentives to make sure that not too many people access their accommodations so that the university maintains financial solvency? Maybe everyone who wants an accommodation must first bake an apple pie or play Amazing Grace on the bagpipes? Surely, this would contain costs.

Ray, thanks for your example of how this process can be improved. I had never heard of this sort of practice. Thank you also for your thoughts on the social model and disadvantage. Your points are well taken, but I think my point is less about with the conceptual confusions that result from medicalizing accommodation requests as it is about the actual disadvantage it presents. So, I very well may have been sloppy in my modeling.

Kevin, this issue of cognitive disability and the social model is tricky. I have to think about it more, but I'm not sure that the problems of the social model map on to the divide between physical and cognitive disability. I will leave that up to you and Shelley, for now (writing after the 2 newest blog posts).

Jeremy Pierce

At least in my city, this is certainly not true at earlier stages of education. Getting an autism diagnosis for my kids automatically got them a school evaluation, during which the school district evaluated their particular skill sets to determine their accommodations. The doctor even told us in one case that he could play no role in that process. The educational specialists would deal with that. But there doesn't seem to be any need for a diagnosis to get accommodations. That's done by an educational committee. There has to be a psychologist involved, but there also have to be educators present, as well as the parents. I've never looked at the process involved for the places I've taught at the college level, but I've usually assumed that some in-house process involving testing is usually involved to determine accommodations (at least for certain kinds of accommodations).

ajkreider

Thanks for replying Joe.

Of course, social empowerment has costs. And, that there are costs associated is not a sufficient reason to deny that empowerment.

The benefit of the medical gate-keeper model is that it may allow for the empowerment of those who been denied it (those who have been disabled, even socially-defined), more cheaply. And by "more cheaply" I mean moreso than achieving that empowerment through wholesale societal redesign. This will be acute with regard to less common disabilities. Case by case redress of injustice will just be cheaper than big institutional changes. At least for some disabilities, for a while.

The goal isn't to create disincentive. It's to do the least necessary for redress. The medical evaluation is a proxy for "what do you need, that you're not getting, to flourish" This may quite literally be less than ideal. And structural changes can be made along the way (say, by altering building codes and such). But in a time of limited budgets, allowing the micro-aggression associated with medicalized hoops seems at least a temporary tolerable evil.

Tao

I am faced with this choice:

Endure treatments and medicines that don't work or worsen me, even if I have already tried them before, in order to prove impairment to the gatekeepers

(including all the scheduling, cost, discomfort, and transit - and having people continuously poking at you, literally and figuratively speaking)

---OR---

Die on the street because I have no other means to meet my basic needs, including the treatments that may help substantially, if not sufficient for employment.


How is that for forced medicalization?

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