AAPD Article on the "New Eugenics" and my thoughts on the UN Convention

This is a great piece by the folks at the American Association of People with Disabilities from the Washington Post. You must check it out...

"In its preamble, the recently unveiled U.N. Convention on the Rights of Persons With Disabilities recognizes "the inherent dignity and worth and equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world."

We wonder what Oliver Wendell Holmes would have said about that.

This month marked the 80th anniversary of the disgraceful Supreme Court decision in Buck v. Bell, which upheld Virginia's involuntary sterilization laws. In his majority opinion, Holmes declared: "It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough."

Although eugenics was eventually dismissed as "junk science," it didn't happen before states authorized more than 60,000 forcible sterilizations and segregated, institutionalized, and denied marriage and parental rights to those deemed "genetically unfit."...

The rest of the article is here: http://www.aapd.com/News/aapdinthe/070519wp.htm

Before you leave however, I am still confused as to why the U.S. refuses to sign the newly ratified UN Convention on the Rights of Persons with Disabilities. Well, I'm not really that confused...the UN Convention elaborates protections for individuals with disabilities that go well beyond the protections available in the U.S. under ADA, the Rehabilitation Act of 1973, IDEA and other disability rights policies. I would imagine that the U.S. is reticent to agree to abide by the UN Convention because it will require some pretty dramatic shifts in the policies currently in place in the U.S. But, is that such a bad thing? A costly thing perhaps, but definitely not a bad thing.

I still think that it's ironic that we "advertise" our country as the bastion of freedom, liberty, and democracy, but we have some of the most backwards disability rights, immigration, healthcare, and education policies in the world........(I'd better stop before I get in trouble).

Disability Studies Online?

So here's a conundrum that I've been dealing with for the past several months: Is disability studies a content area that lends itself to online coursework? I've just finished teaching my first entirely online class in disability studies, and I have received mixed reviews from the students. Some likes the flexibility of the format, but others felt that it was tremendously isolating. I have to also add, that after reading the finals, I have my doubts as to how much some of the students learned; but that's the case in all classes. Maybe I'm just being too picky about the progress I expected to see in my students' thinking...

On the one hand I can see the positive aspects of online learning. Online courses are more convenient for many people, including nontraditional students, and individuals with disabilities who may not be as mobile as other students; but, the online format is also tremendously isolating. Disability studies is all about breaking down the socio-cultural aspects that create the disability phenomenon, and it seems antithetical to teach about social issues and attitudes in the isolation of a virtual online course. Interaction, confrontation, and discussion seem to be central to disability studies, and I have yet to see an online medium that replicates the power of face-to-face for these purposes. I also have concerns with the overall accessibility of online learning environments for individuals with disabilities. In a medium where text is central to the communication of meaning, it almost necessarily excludes individuals for whom text is not a primary mode of meaning transfer...

Now I am willing to admit that I may not be the most skilled online instructor, and perhaps beefing up my skills would make a course more useful for students, but even improving my skills doesn't address many of the issues I have with online courses. I am also willing to admit that maybe we are not using the right technology for these courses. But, then the problem becomes investing in new technology...and that costs money.

So, those are my thoughts for this evening. I'm not sure there is a satisfactory answer to any of these questions, but there has to be some middle ground where online learning and disability studies can work. What do you think?

Programmatic Segregation: Right Under Our Noses!

I’m sitting here in Park City, Utah preparing to attend my brother in law's wedding this afternoon. But, I wanted to sneak out this morning to update you on our faculty meeting last week and the most recent issue related to the special education program at the University of Idaho…

During our first day of faculty meetings I was pulled aside by the SPED program coordinator to tell me that the College was proposing to move the faculty in Special Education to new offices on the 2^nd floor. At the present time, the SPED faculty is up on the 4^th floor with the faculty from the Curriculum and Instruction Dept. (meaning regular ed folks). The decision to move the SPED program, after some inquiries, came from the C&I Department who wanted more space for “their people”. There was no consultation with the SPED faculty.

The argument that we got from “leadership”, was that it was a nice space, they would provide new paint, and furniture, but it still amounts to segregation of the “disability folks”. The literature in teacher preparation, higher ed policy, and even the report from our newly convened Teacher Education Task Force here at the University of Idaho have identified the need for more interaction and infusion of special education content into the general education teacher preparation programs, but at the same time they want to move us to a different part of the building and remove us from the setting that would help to facilitate collaboration and curricular infusion.

It’s funny that this is happening right now, because this is exactly the type of phenomenon that I am researching. I am actually going to present my work on the segregation of teacher preparation programs at the Royal Geographic Society later this summer in London. I find it so ironic that it’s happening right here under my nose as I prepare this manuscript! Its picture perfect, although not surprising. This happens so often in universities, and no one questions it. No one even seems to stop and consider the far-reaching effects of simple geographic separation on the intellectual geography of higher education. Perhaps it’s a product of our American mindset. We are a people who have very few ties to “place”. We assume that we can thrive anywhere with anyone and neglect the effects of the environment in which we choose to work and live. More on this idea later…

Anyway, I think I might post my RGS paper here piecemeal and see what feedback I get. So to begin with, here’s the premise of the RGS paper I’ll be presenting in August. I think you’ll also find it terribly ironic:

Despite past and current legislation, children with disabilities in U.S. schools continue to find themselves segregated from the general education classroom and separated from their peers. Although there is a large body of research that supports breaking down these literal and figurative barriers to the general education classroom, teachers in the U.S. school system have not been able to fully embrace the idea and practice of inclusive education. Inclusion is a concept that has not been fully embraced by teachers precisely because the concept of inclusion has not been fully embraced by the institutions of higher education that train our teachers. IDEA 2004 requires that students with special needs should be educated in the regular education classroom “to the maximum extent appropriate”, but a significant amount of research has shown that a majority of general education teachers feel unprepared to deal with students with disabilities. This pattern indicates that there is a fundamental mismatch between the current special education policy and the structure of teacher preparation programs. The root of this problem lies within our institutions of higher education that, for the most part, still segregate teacher preparation programs for general education and special education teachers. Higher education is an arena where there is still widespread institutional discrimination against individuals with disabilities, and there is a strong tendency to segregate and compartmentalize university departments that specialize in disability-related content. This paper examines this institutional discrimination/segregation at institutions of higher education and highlights the need to integrate teacher preparation programs if inclusion is to become more widely accepted in our schools.

The "Ashley Treatment" is ruled illegal...

A recent ruling in Washington has declared the the Seattle hospital that performed the controversial "Ashley Treatment" violated Ashley's rights under Washington state law. Here is a copy of an email from Mark Stroh, the executive director of the Washington Protection & Advocacy System, who conducted the investigation into the hospitals actions:

Subject: Children's Hospital violated Washington State law in performing the hysterectomy portion of the "Ashley Treatment" - Investigative Report Issued

To the disability community nationwide:

As many of you know, the Washington Protection and Advocacy System (soon to be Disability Rights Washington - DRW), opened an investigation in January 2007 into the "Ashley Treatment" interventions and the role of Seattle's Children's Hospital.  Today, we are releasing the findings of that investigation.  The view the full report, complete with appendix items, please visit our website www.DisabilityRightsWA.org

You should know:

Children's Hospital violated Washington state law in performing the hysterectomy portion of the "Ashley Treatment " which resulted in the violation of Ashley's constitutional and common law rights;
The Hospital has acknowledged the violation and accepted full responsibility;
The Hospital has entered into an enforceable, written five (5) year agreement with WPAS to take corrective action and other proactive steps; and
We have included a list of next steps in the Executive Summary that we hope will be a part of a nationwide collaborative effort of the disability community that will result in Ashley being the last person to receive "treatment" named for her.
Seattle Children's Hospital acknowledged the following in our five (5)
year, enforceable agreement:

"Children's has received and reviewed the WPAS report on Ashley and the treatment she received.  In general, Children's accepts the WPAS report. Specifically, Children's agrees with the finding in the report that Ashley's sterilization proceeded without a court order in violation of Washington State law, resulting in violation of Ashley's constitutional and common law rights.  Children's deeply regrets its failure to assure court review and a court order prior to allowing performance of the sterilization and is dedicated to assuring full compliance with the law in any future case."

Some of you may think having a court order is a procedural matter easily overcome.  That is not the case.  We encourage you to carefully read the legal requirements section of our report to gain a full understanding of this critical safeguard of the rights of children for whom this treatment may be proposed.

If you are wondering about the applicable law in your state the first appendix section includes contacts from many states who have agreed to share their knowledge of the law in their states.

This is a significant victory for the disability community and goes a long way to recognizing the rights of children who may not be able to speak for themselves.  Hopefully Ashley will be the first and last child to have to suffer through the horrendous treatment that now, unfortunately, bears her name.

"Why the disabled do Taliban's deadly work"

This is an article from today's Globe and Mail, Canada's national newspaper (Click the title of this post. The title links to the article.) Pretty unbelievable stuff...although I don't have a lot of time to comment on this, it does bring up some interesting questions about empowerment. Are these individuals doing this because they're being exploited? Are they doing it because they've lost hope? Or, even more disturbing, is it a subconscious, or even conscious, reaction against a society that demeans their social status and cannot provide adequate supports. Interesting theoretical implications here...more to come...

The Problematic Nature of "Quality of Life"

A couple of weeks ago in the online Introduction to Disability Studies class I am teaching this semester, I brought up the notion of "quality of life". This is a highly problematic term that, I think, is too often blindly accepted as a valid construct. As I wrote to my class, "quality of life" is a construct that has come to be enshrined in disability policy and administrative procedures, but what does it really mean? What is quality of life and is it the same for everyone? When was the last time you were asked about your quality of life? How did you respond?

In Medicaid and other programs QoL is measured by surveys that frequently ask you to rate your quality of life on a scale of 1-10; this is exactly the same as the scale that doctors and hospitals use to assess your level of pain. Now, this is an interesting parallel to consider....

When was the last time you were in the hospital and had a doctor or a nurse ask you to rate your level of pain? It’s hard! When I broke my arm last year and went to the emergency room, the admissions desk asked me to rate my pain. I actually had to think about it. What is 10? What is 0? What is the difference between 5 & 6? I had to tell the admissions clerk that honestly I didn’t know how to rate my pain, I’d never broken my arm before. I knew that it hurt, but I obviously wasn’t dying; but does a 10 mean I’m on the verge of death? It’s all very ambiguous.

Now think about how you would rank your quality of life. Is your quality of life today a 6 or an 8? Is your 6, the same as someone else’s 6? What does it mean if I’m a 9 today and a 2 tomorrow? Does that mean that my average quality of life is only a 5.5? These are all important issues to think of when we discuss issues of quality of life.

Let me give you a practical example. When I was working with Medicaid in Alaska we began developing a Quality Assurance plan to ensure that people were getting the services they needed in a timely and cost effective manner. One of the tools in this QA plan was a Quality of Life standardized interview protocol. In our tests of this protocol we reviewed responses from urban, rural and bush communities. Interestingly we found that people with disabilities living in urban areas, with apartments or homes, regular and reliable support staff, and many social, educational, and recreational opportunities indicated that they had a lower “quality of life” than individuals in bush communities.

Now, if you’ve been to bush communities in Alaska, then you know that many houses are cobbled together from bits and pieces of whatever can be found. There is rarely indoor plumbing and often many homes are without electricity. Often homes below the Arctic Circle are heated with wood, and above the Arctic Circle where there are few, if any, trees homes are heated with outrageously expensive heating oil. In general, the living conditions are very rough and in some place could be considered primitive. There are even government and NGO reports that have classified living conditions in bush Alaska as “Third World”. But, getting back to my point, individuals with disabilities who lived in these communities, on average, reported a higher quality of life than individuals in urban areas.

So what does that mean? Should we send all people with disabilities to live in rural Alaska and then they’ll be happy? No, obviously not. But it does require us to question what constitutes “quality of life” and if it is even a construct that can be accurately and reliably measured.

While thinking about this issue for my class I stumbled across this video from the Southwest Conference on Disability that addresses this issue of “quality of life”. Check it out:

• Quality of Life Video: http://www.youtube.com/watch?v=cPRpGI1fRC0

Story on UA Initiative to Create DS Program

Here's an interesting story on the University of Arizona's initiative to create a Disability Studies program. It certainly helps to provide perspective on the work that needs to be done here in Idaho. Although we have a lot of staff who are interested in the program, we are really lacking in good, committed faculty. Maybe this is partially my fault for not spending more time on campus with faculty, but it could also be the environment. It's hard to tell.

The real issue comes down to priorities. Although there are a lot of faculty who have said they support Disability Studies and want to see more offerings here at the University of Idaho, there are very few who are willing to devote time and effort to see that it happens. Many faculty don't feel that they have a strong background in disability, and are reticent to participate in a program that is a little outside of their area of expertise. I can sympathize with this, but I think that it means that we need to do more outreach to help faculty see that disability isn't necessarily a discrete content area, but rather a generalized interdisciplinary construct that pertains to all content areas and specializations.