Sunday, July 05, 2009

Dis/Ability: In Which The Radical Raises A Question About Our Commitment To Access

I want to begin this post by asserting that I have benefited enormously as a thinker and as an educator from the people in my life who have asked me to think about the diverse categories of humanness that we call disability. Critical ways in which I am smarter are: a greater appreciation for the many differences between students, attentiveness to how I occupy a classroom physically, and a sharper perspective on how stigma is applied even (or especially) in elite educational atmospheres.

One of the things I am very aware of, for example, is how very few physically disabled students we have at Zenith. My acquaintance with several disabled colleagues reminds me why if I didn't get it already. The campus is at the top of a hill, and for the fully able, free movement can require a vigorous climb; going down also requires balance, joint stability and muscle control that people possess in varying degrees. Elevators are slow, too small and often crammed with faculty and students who could easily walk upstairs. Large parts of the campus are completely inaccessible, and are only made so when the point is pressed sharply. Furthermore, building codes, even when satisfied, don't necessarily make a building or a part of the campus accessible to everyone. The Castle meets code, but I learned this year that it isn't actually "accessible" to several colleagues. Or rather, they can get in, but the energy required to do so is enormously taxing and puts tremendous pressure on the remainder of their day.

In the interests of full disclosure, the grandfather I knew best had MS; when I was little he limped and walked with a cane, but the disease progressed over time. I grew up scoping out spaces to figure out whether he could get through them (a person with a cane or a walker is much wider and needs a firm surface); looking for hand railings; knowing that everywhere we went as a group, we went at the speed of our slowest family member; and when I was big enough, being leaned on, tying shoes and helping to lift his lower body in and out of the car. I also have a young cousin who is somewhere on the autism spectrum who I haven't spent much time with but like a lot. He is bright, deeply compelling as a person, and someone I would be friends with if we lived on the same coast. And autism really changes your perspective, I have to say. You heard it here first perhaps: once you have someone in your family diagnosed with autism and you start looking around at everyone else, legendary "quirks" in members of the family become a pattern and hence, make a lot more sense.

I'm just saying.

But you can forget what you know, particularly since as you become used to someone's different abilities, they begin to seem "normal": more on the use of this word later. I have realized that I can also be very alert to those disabilities I am familiar with and be obtuse about others (hence, one of my blogging buddies had to ask me not once, but twice, to eliminate the casual use of the word "crazy" from my posts when referring to those people who I found irrational or incomprehensible in their opinions. You know, it's like those boys who cheerfully yell "Fag!" to point out some failure of normalcy in the immediate vicinity.)

I first began thinking about disability studies years ago when I was in a seminar with someone who has been a pioneer of the field, Rosemarie Garland-Thompson (her new book, Staring: How We Look is a must-read.) We were both more or less starting out in our careers, and our conversations were the first time I had thought in any structured way about the social privileges that able people take for granted. Some years later I ran a speaker's series on Disability Studies, and came to admire how our guests thought about what they did in a lecture or seminar room. One speaker pointed out that it is wise to bring along printed texts of a talk for those who are hard of hearing, and that they should be in large type for people who have limited vision. Another noted that anyone who had full ability was in a time-limited state: "You know, most of us will be disabled eventually," he said.

And yet, over a quarter century after that seminar where Rosemarie introduced me to this world of ideas, I can't say that higher education as a whole has moved as far as it should have towards thinking about accessibility as a matter of daily practice. What most of us are familiar with on elite campuses is learning disability, an often daunting thing to engage. If you ask me, most of us are on a spectrum of learning disabilities of some kind, with some on the florid end and others of us who are entirely undiagnosed and have learned to cope all by ourselves. University professors: make a list of all the things you do while you are reading, writing and grading papers -- and then ask yourself why.

And while we're at it, what's the love affair with timed testing? How does this serve learning? And how might we go about changing this feature of university life without asking faculty to teach a separate course to every student in the class?

I know parents who choose colleges based partly on the quality of what are now called "Learning Centers" (no, Zenith doesn't have one -- although we do have a good coordinator who has made a big difference in my opinion). But every college should have one, and it should be avaialable to students who do -- and do not -- matriculate with a diagnosis in hand. For example, I have heard from a friend of mine who tutors high school kids that every book used at Bard is available in recorded format automatically. I think this is very cool, for three reasons. One is that Bard is reaching out and saying to smart kids who do not learn in conventional ways that they are wanted and valued. Another is that students who, for whatever reason, have difficulty with visual reading -- whether it is eyesight, ADD, difficulty holding the book with one's hands, or something I'm not thinking of -- do not have the burden of making separate arrangements for every book, every class, every semester. But the other reason I think this is cool is this: universities spend wads of money moving ahead to the next thing while leaving problems that they know exist unsolved. Making learning accessible isn't fun, it doesn't make your university more trendy or popular (when was the last time you saw a visibly disabled student in an Ivy League view book?), and it requires ongoing investment of time and money to keep things up to date.

It's not sexy, trendy, fun or visible. Worse, many elite schools don't want to admit just how many LD students they have on campus: most don't know, since the Americans with Disabilities Act makes that information confidential unless and until a student self-discloses. But they also don't want to deal with the stigma, of defending themselves for admitting students who can't handle the work alone -- working alone being something we continue to value for obscure reasons. So many places, even if they have accessibility services, keep quiet about them. And I know very few faculty who start thinking about this at all until they, or a family member/loved one, is born, becomes, or is diagnosed as, disabled.

Of course, financial accessibility is something that is more at the top of everyone's minds nowadays. This story in today's New York Times features an online startup called Chegg that helps students cut their book costs by buying, reselling and renting textbooks. Financial accessibility, and perhaps cutting their own library costs, through the adoption of new technology is also how Arizona State has gotten itself sued by the National Federation for the Blind and the American Council of the Blind.

According to The Chronicle of Higher Education, Arizona State University will be distributing course materials via Amazon's Kindle technology, presumably to cut costs for students and maybe even to be more green. But while the new Kindle reads to you (I'm told it has a grating, non-human voice, much like other computer technology for the disabled), its menus and mechanisms are not friendly to visually disabled people, who won't be able to make the choices necessary to choose and activate their course materials.

Okay -- here's the good news. With the exception of a few nasty comments about how selfish disabled people are ("it's always about you, you, you, isn't it??!?)", I am pleased to say that a great many of the comments on this story show a great deal of understanding about accessibility as a civil rights issue, and of disabled students as valued members of our learning communities.

The more troubling news? That while the vast majority of comments are sympathetic to the rights of disabled people to be included, their well-being as individuals remains unconnected to how their full participation is of benefit to the rest of us. No, I'm not talking about diversity -- although there is that. I am talking about ordinary, garden variety conversation, from which the whole community benefits in conventional ways. In other words, the goal cannot only be to support the disabled in approaching "normal;" we need some attention to how "normal" needs to be critiqued and complicated to understand why greater access to everyone's ideas about everything was not valued enough in the first place to provide for it.

Which is how these lawsuits - which seem like an unnecessary nuisance to many well-meaning people -- become the only way for disabled people to adjust their learning environment. A well-intended move by ASU (Case Western and Reed have apparently also adopted the Kindle technology), one that helps students who have difficulty accessing colleges because they are poor, has been made without attending to the mechanisms by which other students, rich and poor, are actually hampered by it. If ASU is like many other places, they have a "you can't please all of the people all of the time" attitude. Disabled people are handled on a case-by-case basis, the wheel is reinvented for every student, and the institution itself does not fundamentally readjust its information technologies or classroom access to anticipate the needs of its students. And often, as I indicated above, they don't have to: the savvy disabled student and her parents will have figured out what she needs and pick a college by its ability to provide those services.

But imagine the wonderful students we would all have access to if we made the investment of time and energy to think about this before we were sued?


JackDanielsBlack said...

For visually disabled folks, the new Kindle isn't there yet, as you point out, but it is a step in the right direction. Before I retired from IBM, I worked with folks who were doing things like voice navigation through menus for the visually impaired. Extensive standards work has been done in this area (and much has been incorporated into products like Microsoft Windows), and it is just a matter of time before it shows up on reading devices like the Kindle. In addition to its reading capability, the Kindle also lets you vary text size, so you can get a nice large font if you are partially impaired visually. As someone who has always been profoundly nearsighted but loves to read, I am encouraged by developments in this area.

Janice said...

This subject's very near to my heart. Our younger daughter is autistic and, while academically very capable, requires support and allowances to be able to manage some regular classroom activities. The K-12 board is great at supporting such special needs students and my own institution also has a great centre, but I know it's very much "hit and miss" elsewhere.

It also upsets me when I hear some colleagues complaining about simple accommodation for students with special needs because it's a very small change for most of us and a very big difference for the individuals who need a little help to be able to learn. If we're passionate about making higher education accessible to intellectually capable people, regardless of race, gender, economics and so forth, special needs students shouldn't be left off that list.

In twenty years as a professor, most of the accommodation requests I've fielded have been effortless. They're along the lines of "send a copy of the exam to our office and we'll administer it with extra time or at the Kurzweil machine or what have you." A couple of students with visual impairments have asked to be able to record classes (we simply ask, for privacy rights of other students, that the audio recordings revert to the special needs centre's control until the course is done and are then wiped).

As a result of my experiences as an educator and a parent to an individual with special needs, I've tried to make some adjustments to the way I teach or circulate materials that improves the course for everyone involved. Ergo, it really irks me when instructors make the request for accommodation a drama all about themselves!

Notorious Ph.D. said...

I do have my complaints about the occasional student who abuses the process, but am glad to note that these exceptions are rare.

I note that my office is in a profoundly non-ADA-compliant building -- no elevator to access the second floor (where the grad advisor's office is located), and doors too narrow for most wheelchairs to get through (I've seen one of our grad students having a meeting with a professor in the hall for just this reason). Many of the classrooms on the aging humanities campus are likewise all but inaccessible to someone who can't climb stairs.

I kind of wish someone *would* bring an ADA lawsuit against us -- it might be the final straw that gets our overcrowded, broken-windowed, asbestos-laden early 70s "temporary" structure torn down and rebuilt according to code.

onely said...

I have been able to take for granted the fact that I can access most areas easily (minus a few episodes on crutches that opened my eyes, which unfortunately only closed again after my feet healed). However, I have a relatively small but telling example of colleges not accomodating minorities:

I went to a very liberal private college in Michigan that had no left-handed desks. Now, as I said, this is a relatively small issue. But being a lefthander with a back problem, I hated crouching over right-handed desks. So I decided to try to do something about it. I went to the business office and the dean's office to ask if we could please order a few left-handed desks to put in the classrooms, but no one cared about us poor little left-handers, and no one ever ordered the desks. I thought this was ridiculous for such a supposedly progressive school, and I can only hope and assume they treated physically challenged people better. Administrations get into a lot more trouble (I hope!) for not providing wheelchair access than not providing lefthanded desks. But institutions should not decide who to accomodate based on how much "trouble" they'll get in if they don't.

I know, small issue, but it bugged me, what can I say?

Rachel said...

My mind tends to run to the practical. I am not very familiar with Kindle. I have seen them, but considered buying one as something only the wealthy would do. I am wondering whether Kindle materials are able to be downloaded onto a computer. Would the books be accessible on a laptop computer which has been made accessible to those who are visually impaired or who have difficulty processing reading materials on a small screen?

In other words, is there a reasonable accomodation readily available?

I also find myself pondering the whole issue of accomodations. As the parent of a child who was diagnosed as "Intellectually Gifted/Learning Disabled" I spent every school year talking with teachers trying to assist my child. Generally, she would never ask for the help she could have received. She is at the point in life where she needs to go to college, but the whole process of handling the application procedures hits right where her disabilities and apparently, my own, lie.

I feel like I am rambling, but what I am trying to convey is a sense of frustration with the way disabilities are handled and a concern that sometimes our "help" actually becomes a hindrance when those with some disablities don't develop the tough skin that it takes to survive in the world. I wonder if my child wouldn't be able to meet her goals better if I hadn't done as much to try to help her along the way.

I don't have the answers; I am just pondering...

JackDanielsBlack said...

Rachel, the Kindle is not cheap, but if you read a lot of current books it is a real good deal. Most new novels, biographies, etc. are available from Amazon for Kindle for around 10-15 dollars each. (I have noticed that scholarly works tend to cost more than this; I believe the price is partially up to the publisher.) In the year or so I've had my Kindle, it has more than paid for itself because the books are cheaper, you don't have to pay for postage and handling, etc. I guess whether it is a good deal or not depends on how many new or recent books you buy every year.

You can download books to computers, but there are several problems having to do with intellectual property rights for books in copyright. Amazon has solved these for the Kindle. Many older books are available to download , but most computers are not realy reading tools; I find it very difficult to read book-length texts on a computer, but the Kindle works for me just fine. Of course, there are folks who disagree.

And then there is the conservation angle -- when you read books and newspapers on a Kindle, trees are spared.

Another advantage is that it will hold many books (hundreds if not thousands) at once -- very handy for trips and for minimizing clutter.

The Kindle still has glitches, but Amazon continues to make improvements and I believe that it or something like it represents the future of reading.

Good luck with your child. Being a parent myself, I have often had doubts as to whether I was doing the right thing in a particular situation. I consoled myself by thinking that even if I was wrong, I was trying to do what was best for my child. I think that's all any parent can do, really--the rest is up to God or Fate or whoever is running the show.

Dorothy said...

I came out of retirement to attend a local community college that pays lip service to the concept of mental disabilities, but in fact works hard to weed out those who have any neurological deficits at all, including lack of self-confidence, in the field I chose to study. The overall attrition rate in this field is staggering, probably around 90%. Earning A's was tough, but having to cope with continuous instructor suspicion because I didn't fit the "smart" template (therefore not being deserving) was what finally motivated me to leave.

No student that I know of in that field at that school ever received any special accommodations, perhaps because of the institution's informal policy of pressuring those students to leave.

I've learned that acceptance of disability can vary greatly. When I lived in Chicago in the 70s, I regularly saw people with advanced multiple sclerosis, even at work. It was regarded as a bona fide disability under the law, and there were no scenes of cruelty and thoughtlessness involving these people. I was impressed by the maturity everyone involved showed, and work got done effectively.

Today, I live in a part of the country where practically no one has disabling diseases, where affirmative action is seen as a racial phenomenon, and where cruelty is routinely directed toward people who are the slightest bit different from the remarkably homogeneous norm. People judge one another by their apparent raw intelligence rather than by their accomplishments. And, perhaps as a result, city services are poor, the crime rate is high, and the local tax rate staggering. We pay a high price for intolerance, for perfectionistic standards applied to others, for valuing the ability to take rather than the propensity to give.

Accommodating people with disabilities is not simply the decent, fair thing to do. Requiring this generosity teaches people how to be good citizens and how to enjoy doing that. Perhaps just for this reason, requiring such tolerance can be a valuable part of one's education, whether formally a student or teacher. That is what my experience has taught me, anyway.

Jonathan Dresner said...

Part of the problem, TR, is that we work in "Higher" education. Let's face it: for generations, college and university training was restricted to the financially, ethnically, politically, and physically privileged. There is still -- especially in competitive non-state institutions -- a sense of elitism which doesn't fit LD and other disabilities.

Mens sana in corporo sano the old saying goes, and though our defintion of sano isn't what it was, there's still a presumption that this is what students bring to the table.

Anonymous said...

One good thing a grad student and I just did was to get the Graduate School at our university to accept American Sign Language as satisfying the language requirements for the MA. It took a little effort but we succeeded in the end with the help of the Department of Languages strong support. Every university should accept ASL for language requirements.

Dame Eleanor Hull said...

"Elevators are slow, too small and often crammed with faculty and students who could easily walk upstairs." TR, are you certain these people don't have hidden disabilities? When I was 22 I looked fit and was fine on flat ground, but had knee problems that caused considerable pain if I climbed stairs.

Historiann said...

TR, thanks for another supremely worthy and thought-provoking post. You are so ON this summer!

Your post on disabilities is timely, in that I have noticed a real increase in the number of wheelchair-bound students at Baa Ram U. and wonder if others have noticed the same? It's not because our campus (in either its built environment or its bureaucratic apparatus) is especially easy for disabled people to negotiate. Because so many of these students are young or young-ish men, I wonder if many of them are disabled war veterans from our current and apparently ongoing Decade of War. It strikes me that state institutions have a special obligation to ensure that they serve all comers equally. But because so many of our state institutions are financially beleagured, we're frequently the worst when it comes to serving the needs of our students.

Knitting Clio said...

Thanks for posting this, TR. Like Historiann, I'm seeing more physically disabled students (male and female) here at Not-Uconn state university. I don't know how many are veterans but I wouldn't be surprised if the percentage is high.

We do have a Learning Center, which includes a division for students with disabilities. So, this could explain why we are seeing more students with physical disabilities.

Of course it's impossible to know how many students have invisible disabilities unless they request an accommodation.

dance said...

I just moved into a non-wheelchair accessible office (along with six others in my dept). Apparently it is enough (here) to set aside an accessible room for pre-arranged meetings with students who can't do stairs (although I wonder how long my old office will really stay set aside for that). Cutting a new door for the elevator is part of the plan for overall renovations, which will depend on a big capital investment loan. I'll believe it when I see it.

Zach said...

I found Wesleyan faculty and the administration to be quite accomodating to my needs while a student. Like most accomodations that schools/employers/places of public accomodation too frequently resist making, mine were free or very, very cheap. They let me opt out of the meal plan thanks to a letter from my doctor saying the food available in Wesshop was too salty (I have Meniere's. True accessibility, I suppose, would have meant them adding healthier options to Wesshop, but I was happy enough to save money by shopping at the local grocery stores). Professor Kauanui and other professors let me type exams the semester I had hurt my wrists too badly in rugby/carpal tunnel combined to hand-write exams. I did have a lot of trouble hearing, especially in large seminars (should be an oxymoron), but never found a way around that.
I'm auditing a Disability Law class at the CUNY Graduate Center this summer, and we keep talking about the different types of equality (formal vs. treatment vs access vs. result). As the partner of someone on the autism spectrum and as someone with a hearing disability who works with people with disabilities as my job, items like Kindle and fancy hearing aids and auditory training are cool but not so relevant. Neither my clients nor I can afford them. The bigger question for us is what insurance covers (a huge question for autism and Medicaid, with vastly different answers in each state), and how might Obama's plan change any of that.

Lauren said...

I would like to say one thing in defense of ASU. I went there as an undergraduate and everyday saw people in wheelchairs. Most of the buildings are quite new and very accessible. There is also a golf cart service for temporary and permanent disabilities. When I came to MI for graduate school, I was so confused to see no one in a wheelchair. I thought about why quite frequently. It probably does have something to do the winters and how spread out my campus is. When a friend's daughter (a brilliant woman with Muscular Distrophy) started attending campus, I asked how she would manage and learned about a few accommodations my campus has made. Still, if I knew anyone in a wheelchair looking at colleges, I would suggest ASU.

Lauren said...

Sorry--that should have been "a golf cart service for people with temporary or permanent disabilities." And I would add a free bus line that served the local communities, which I made much use of when I was recovering from ankle surgery.

Tenured Radical said...

Lauren: I'm not surprised that ASU does so well around mobility issues. It's my observation that states attractive to retired and elderly folks have building codes that are friendly to the mobility impaired. Florida and N. Carolina are two other places I have noticed this (and the racetrack at Monmouth Park.)

But I would also say that the challenge of disability is trying to think about access in an environment that is changing, and as new people make claims. When I began teaching, you never *heard* of learning disabilities at a place like Zenith. Many things have changed -- there is more diagnosis, so more people fit the category -- and there are more people willing to become visible.

Two other things that come out of this comments section: I think one big challenge is to push institutions to respond without heaping contempt on them. Your point is, I think that if ASU blew it on the Kindle, they do other things very well. I think a second big challenge is to attend to the individual nature of disability without forcing every person to make a claim as an individual.

Horace said...

Great Post, TR...I've been thinking about disability a good bit lately, and want to suggest two books for your reading list if you haven't gotten them already...Robert McRuer's *Crip Theory* and Terry Galloway's memoir *Mean Little deaf Queer*...