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Thursday, May 27, 2010

Educational Barriers Past and Present: Problems Abound

I went to college well before the ADA was passed and within few months of being paralyzed. I did not have a clue about disability and college life when I left home. I was naive in the extreme. Today I joke that and I received a crash course on disability and in my spare time earned a BA. In retrospect I chose the perfect place to go to college. I attended Hofsta University and unbeknowst to me it had a major commitment to making the entire campus accessible. The express goal was 100% access. I did not choose to attend Hofstra for this reason. I went there for two reasons: the male female ratio was heavily in my favor and it was close to New York City. While all students learn a great deal at college, I learned more than most foremost among those things was the social consequences of disability. My peers with disabilities were a great help. I learned mundane things like how to change a tire on my wheelchair to how to assert my rights as a human being. My real teachers did not have PhDs but rather were my peers with disabilities. Hofstra was in many ways a bubble of security. I had rights, those rights were protected, and as an institution Hofstra had a major commitment to disability rights. This was not the norm at the time. I learned this at Columbia University where I encountered overwhelming opposition to access. I was the only student on campus that used a wheelchair. Access was deemed a "problem", one with no simple solution. Architectural integrity was critically important given the age and beauty of the campus. Ramps were ugly and there was no interest in helping me navigate the campus. Luckily I had a powerful ally on campus--Robert Murphy who by the time I met him was a quadriplegic. Whenever I had a problems with access, and I seemed to have one daily, I gave him a call and the problem would be magically resolved. Without his support, I would not have a PhD. Columbia was without question hostile to inclusion. Disabled students were perceived as a problem. Any accommodation had to be fought for and even when granted was frowned upon.

I do not think much has changed since I left Columbia with a PhD in hand in 1992. American universities, especially the more prestigious schools, consider any so called reasonable accommodations unseemly. There are many reasons for the resistance to access for students with disability. Cost, ignorance, and a total lack of commitment are the three primary reasons institutions of higher education resist making campuses inclusive. Exceptions of course exist. Hofstra maintains its commitment to access as doe others universities too numerous to mention here. But this was not and is not the norm. So what has changed since I went to college? Campuses nationwide present less architectural obstacles. Ramps abound as do elevators. But to me this is all window dressing. What has not changed is exclusionary attitudes and practices. While none will describe wheelchair access or reasonable accommodations for students with a learning disability as being a "problem" that does not mean such students are welcome. Wheelchair accessible bathrooms and dorm rooms for instance are hard to come by. Accommodations for students with a learning disability are even harder to get. Sure most campuses have an office for disability services. But the person that runs the office is rarely disabled. The focus on disability services is often an added on responsibility to an existing job and not a priority. Again, exceptions to this exist but what institutions of higher education have failed to do is equate disability rights with civil rights. Reasonable accommodations are perceived to be a problem or, worse yet, an unfair advantage, especially when it comes to students with a learning disability. More than once a colleague has complained that the school where I teach is "overrun with students that claim they have a learning disability". These scholars tell me "they are sick and tired of being forced to give students extra time on exams and refuse to help them". Animosity is not veiled nor is the belief students seeking any accommodation are really seeking an advantage over their peers.

My thoughts were reinforce after reading about two case at Princeton University last week. The Office of Civil Rights and the Department of Education reported it was investigating two student allegations that Princeton had violated the ADA. Both cases involved student requests for extra time on exams. It is alleged that the university applied excessive scrutiny to such requests and that it used the concept of academic integrity to deny compliance with the ADA. Yikes, this sounds familiar to what I observed at Columbia in the early 1990s. The Daily Princetonian reported about the law suits. I tend not to read comments at the end of such stories as I know all too well they will be negative. But the fact 58 people took time to reply, a large number, I took a glance at what others had to say and was shocked. Negative response were expected but nothing prepared me for how nasty the comment were. Here is a random sampling:

I can't believe the University gave in to Metcalf-Leggette's demands. They have sent a message that if ever you want an unfair advantage on your exams, all you have to do is sue the University.

The evidence that the accommodations were insufficient is that she "ran out of time on every exam"... because, ya know, nobody without disabilities requiring accommodations ever runs out of time on exams...
Kudos to Princeton for "prioritizing a commitment to “academic integrity”. And shame on Princeton for abandoning that commitment in the face of a law suit.

I love how I see this girl out on the street multiple times a week. In her future job, is she going to get 100% extended time? For example, if she becomes a trader, will the market remain open for a few more hours so she can catch up? Or how about a surgeon...will the patients kindly stay alive for twice as long as they would have otherwise so she can fix them up? This is ridiculous. Plenty of other athletes give up the sport they play so they can keep up with the curve at Princeton (not saying athletes are less intelligent--just saying athletes are humans and it's incredibly difficult to keep up with some of the robots here)--maybe this girl should consider that route before basically suing for permission to cheat on exams.

how many people at princeton have taken a test that they could not finish? raise your hands please. wow, pretty much everybody? i guess we all have learning disabilities and we should all be granted 100% time extensions.

“I’ve run out of time every time”. That's how tests are designed -- this is true for everyone!!!!!!!

i mean, i don't really understand how a severe dyslexic who would require twice the alotted time for exams could survive here anyway. How in the hell would they handle the workload? The hundreds of pages of reading per week? I'm not saying its not possible but most students who don't have learning disabilities have a hard enough time getting reading and writing assignments done on time. Does this mean a dyslexic should be given twice as long to complete papers? Two years for a thesis? Extra time on exams has always pissed me off and using ADHD as a crutch is embarrassing. Anybody who wants to get a prescription for study steroids can convince someone that they have attention issues. I'm less opposed to extra time for someone with dyslexia, but still confused about how they would hack it at Princeton beyond actual exams.

The comments above were written by Princeton students. I would estimate 95% of the comments were negative. This is a problem--"reasonable accommodations" are not perceived to be reasonable at all. Students with a disability are not seeking a level playing field but rather an unfair advantage. Th fact students at Princeton don't get the issue is not one of advantage but equality is symbolic of the failure of the ADA to change how American perceive and react to disability. Hence, my belief that not much has changed since I was a graduate student. A sobering thought on a hot and sticky day in New York.

Tuesday, May 25, 2010

Academic Conferences: Who Can Afford to Attend

For the next week I am on an austerity budget and many pasta meals are will be on the menu. I am good at budgeting my expenses. I rarely splurge on material things and in the estimation of my son am among the cheapest humans on the planet. My budget is stretched to the limit however in large part because I have been to two conferences in little over a month. At the time it did not seem like I was going to spend a lot and in truth I have not spent that much. But the price of gas and food alone put a small dent in my budget. The money I have spent is on my mind since I heard one scholar at the last conference I attended implore people with a disability to attend conferences. Great advice I thought which was quickly followed by a second thought: who can afford to attend these conferences without institutional backing? When I attend a conference all expenses come out of my pocket including registration. All academic conference are expensive and I draw the line at $200. This line eliminates many conferences I would like to attend and I will admit I make exceptions and spend more once in a while. Am I being cheap as my son would suggest? I think not when one adds in the cost to register, hotel or motel accommodations, food and transportation. For instance the conference I attended last weekend at Union College cost me almost $500. To me, that is an expensive weekend--a work weekend no less.

Another conference is coming up--the Society for Disability Studies in Philadelphia. After listening to the speaker last weekend, a scholar I respect, I thought, don't be so cheap, go ahead and splurge. Go to the SDS conference. I have not been in many years and Philadelphia is not too far from New York. So on-line I went and was astonished by the pricing. Yes, the SDS meeting is a yearly event, and yes I knew it would be expensive, and yes, I knew staying in a major city would cost a lot. But nothing prepared me for the below pricing for the SDS conference found on the SDS website:

Registration Category earlybird Cost regular rates
member - full conference registration (income above $45000) $315.00 $350.00
member - full conference registration (income between $20000 & $44999) $290.00 $325.00
member - full conference registration (income below $20000) $135.00 $150.00
member - single-day $180.00 $200.00
nonmember - full conference registration (income above $45000) $450.00 $450.00
nonmember - full conference registration (income between $20000 & $44999) $425.00 $425.00
nonmember - full conference registration (income below $20000) $200.00 $200.00
nonmember - single-day registration $250.00 $250.00
film pass only $20.00 $20.00
adjunct pass $50.00 $50.00

The above cost effectively eliminates any person without an institutional affiliation. The costs also eliminate virtually every person I know with a disability myself included. A quick bit of math reveals it will cost me $350 to get in the door and at least $100 to stay over night, With gas and tolls that is about a $500 day. The conference is four days long. So much for inclusion. Surely the people that run the SDS know that 66% of people with a disability are unemployed and that most live at or below the poverty line. I find this ironic in that the very people the SDS study could not possibly afford to attend their annual conference. No wonder I feel estranged from the SDS. Why for years I could not even afford to read the so called flagship journal of the organization--or have access to an article I wrote! Thankfully this has changed and I hope some semblance of sanity will prevail when it comes to registration costs for the SDS annual meetings. To me, the cost of conferences is a form of exclusion. Ivory Towers do exist and conferences are for those with an institutional backing or significant economic resources. I realize hosting conference is expensive but surely there must be a way of being inclusive. In fact I would speculate conferences would be far more lively and innovative is they were more inclusive.

Monday, May 24, 2010

Discrimination Reported and Quickly Forgotten

I am just back from a conference at Union College entitled Disability and Ethics Through the Life Cycle. As I have noted I am not inclined to attend conferences. In part I am simply not that social and frankly the costs of attending conferences is significant. I prefer to spend my time and energies elsewhere. Regardless, I enjoyed as much as I can enjoy any conference. Though in this case I returned rather sad. I wonder how much, if any, progress was made at the conference I attended designed to find common ground. I saw first-hand a huge divide between activists and scholars, particularly between disability activists and bioethicists, exists. What struck me was the political aim and goals of the disability activists and the contrasting focus on scholasticism on the part of bioethicists. A divide exists when one should not. Many on each side share the same goals, not all for sure, but enough for a constructive dialogue. I am not sure such a dialogue will be forthcoming any time soon. However this is not the reason I am sad. When I got home I went on line to read the many websites I surf that report disability related news. Much of what I read was strikingly bad. The reports I read could be perceived as isolated stories. Here is what I read about:

A Colorado teacher duct taped a student with a disability hand to his wheelchair. This was his only means of communication.

A bus driver was fired for bullying a 4th grade student with Asperger's Syndrome.

A mother was arrested and is accused of starving her five year old son to death who had cerebral palsy.

In Philadelphia a man with a disability had his wheelchair and dog stolen from him.

The Wall Street Journal reports that states are slashing Medicaid and people with a disability are suffering more than any other population.

Where was I when all of this happening? At an academic conference doing nothing. All these news stories appeared over the weekend. I bet they were widely read and yet I bet no one else will connected them together. To me, these stories are the norm. Abuse, isolation, unemployment, barriers to education all remain common place, every day events. How can this be almost 20 years after the ADA was passed? A bright new era of equality was supposed to emerge. Well, I am sick of waiting and outraged. People are suffering and today I wonder who cares? I do and lose sleep over such stories. I hope and want more company. I want others to get involved, rally around disability rights, and state abuses and isolation will not be tolerated. I just wish I knew how to get others involved and share my outrage.