"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).
Rambling thoughts on academia and society from an academic outpost in the Idaho panhandle.
Sunday, May 20, 2007
AAPD Article on the "New Eugenics" and my thoughts on the UN Convention
Saturday, May 19, 2007
Disability Studies Online?
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?
Tuesday, May 15, 2007
Programmatic Segregation: Right Under Our Noses!
I’m sitting here in
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 2nd floor. At the present time, the SPED faculty is up on the 4th 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
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
Tuesday, May 8, 2007
The "Ashley Treatment" is ruled illegal...
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:Seattle Children's Hospital acknowledged the following in our five (5)
- 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.
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.
Monday, May 7, 2007
"Why the disabled do Taliban's deadly work"
Sunday, May 6, 2007
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.
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
Now, if you’ve been to bush communities in
So what does that mean? Should we send all people with disabilities to live in rural
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:
Friday, May 4, 2007
Story on UA Initiative to Create DS Program
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.
Thursday, May 3, 2007
Core Discovery Class Thoughts...
But getting to my point, I have only offered one section of this class. Each section has a cap of 35 students. My one section has already reached it's cap and I have 7 students on a waiting list, so I'm trying to decide if I should be really ambitious and volunteer to teach another section. It would be a lot of work, but if I can fill two sections if might show a significant demand for disability studies related content and provide demand data that could be used to get a formal Disability Studies program approved. But am I up to the work?
Wednesday, May 2, 2007
May Consortium for Idahoans with Disabilities Meeting: My Thoughts
I attended the Consortium for Idahoans with Disabilities meeting this morning. I’ve missed the last few because I’ve had other scheduling conflicts, but it was good to catch up on what’s going on around the state. I also ended up volunteering to help the SILC and Medicaid with resubmitting a Money Follows the Person grant proposal. Just what I needed, more work! Of course, this is all contingent upon Medicaid being willing to assume the project. Personally, I think that they should submit the grant and then contract out the MFP project to a state partner like the SILC, the DD Council, Co-Ad, or the CDHD. This all depends upon Medicaid being willing to relinquish some control…
My Standard Response: Why I Care...
This is a fair question, and one that is not asked enough…of anyone. Why don't we, as a society, care more about the rights and status of others? Although I cannot answer for society (although I will freely speculate and theorize in a later post), I can answer for myself. Of course, the answer is not simple. It requires some elaboration on my personal beliefs and some of my history, but I'll try to keep it as simple as possible. So, without further ado, this is why I care:
I care about people and their rights for several reasons, but before I jump into those reasons I need to briefly touch on one aspect of the meaning of life that is central to why I care. In short, I can't believe something just for the sake of believing. I have to feel that what I believe is right and represents who I am. Truth and belief are meaningless unless they are part of the fabric of your soul/core/essence and then become a part of your everyday life. Some people end up only believing in themselves; others believe in others; others believe in God; still others believe nothing, this final group of people generally are quite boring and usually end up in bed all day or end up on the fringes of society. Without meaning or conviction there is no reason to engage in any pursuit. Am I wrong?
In my case, I have spent years trying to identify what I truly believe in my core. I have many beliefs that are contrary with the majority of society, and I have many beliefs that are unpopular and, some would say, idealistic. But they motivate me and are something that I am unwilling to compromise because I have identified them as key elements of my personal makeup or “center” (“center” is a term that I will return to again later in this explanation). For example, I do not see any purpose in selfishness or in living just for oneself. This is alienation at its worst and requires that you find some material means to identify your level of self-worth. People who live solely for themselves are, in my experience, very commercial, hedonistic, and selfish individuals who live money-centric lives. What these people overlook is the fact that money dies with the person. Sure it can be passed from generation to generation, but it is not the true measure of an individual. Individuals who live for others are able to look outside of themselves and see that all of the actions of humanity are intertwined.
We are a web of society and that which we do for others, we also do for ourselves. There is a great quote by Ralph Waldo Emerson that says: “It is one of the most beautiful compensations of life, that no man can sincerely try to help another without helping himself.” By reaching out and assisting others, especially others who are in “lesser” positions in society, we are improving society for ourselves. I think that this principle is also well illustrated in the words of Martin Niemoller, a Lutheran minister in Germany during World War 2. Pastor Niemoller said: “In Germany they came first for the Communists and I didn't speak up because I wasn't a Communist. Then they came for the Jews and I didn't speak up because I wasn't a Jew. Then they came for the trade unionists and I didn't speak up because I wasn't a trade unionist. Then they came for the Catholics and I didn't speak up because I was a Protestant. Then they came for me - and by that time no one was left to speak up.” As Albert Einstein observed towards the end of his life: “The illusion that we are separate from one another is an optical delusion of our consciousness.”
Now, if we do not live for ourselves and if we do not live for money, what is the measure of out impact? Well, to a great extent, we have to have a tremendous amount of faith in the concept that we are making a difference, even if we are unable to see that difference in our lifetime(s). One of my favorite metaphors is that of “cathedral building”, frequently used by Bill Shore, the founder of Share Our Strength. Bill points out that the cathedrals in Europe were edifices that required hundreds of years to build. Cathedrals began with a vision by the architects and craftsmen of a particular generation and they laid the foundations, but the final edifice was not completed until well after the original architects and craftsmen were dead. Frequently, in the building process, the design would change and be added on to; but that didn't stop the workmen who labored daily to build the structure. Generation after generation of many families labored to build the great cathedrals of Europe and almost all of the workmen never lived to see the final edifice. Now, did this stop them from working? No. They labored daily to build these magnificent structures because they had faith that they were working on something that would be a permanent monument to their God, and to their efforts and sacrifice. The cathedral builders were engaged in a work that ensured their immortality…
This is the meaning of immortality in my estimation: the ability to leave a lasting legacy in those whom you have personally had a relationship with and the ability to impact the way they live their lives. This is something that money cannot buy or take away. This is, for me, the meaning of life: to create a lasting legacy in those whom we love and serve–for me life is worthless if I cannot be of some service to others or cannot get involved in a cause that will have a clear, positive impact on the lives of others. In other words, I am building a personal cathedral by choosing to help and serve those who are less fortunate, have fewer opportunities, or who are oppressed.
Perhaps it is a low self-esteem issue on my part, but I cannot and would not live just for my own gratification; my life is nothing if I cannot find a way to help others. I made this decision over ten years ago, I know exactly when and where I made this decision too. I was standing on a street corner in the city of Banchyau, Taiwan. I was watching the hundreds of motor scooters and cars going by with people who were fixated solely upon the acquisition of money. These were people who lived in relatively well-to-do neighborhoods and neglected their families, their health, their beliefs, and everything else in the pursuit of more money. They wasted their lives away to make more money and as a result could measure the impact of their lives in the number of paychecks they received and the number of “products” their factory or plant manufactured in a day. I knew many of these people. They were not happy and they were not fulfilled. They all felt that they were living a life that wasn't balanced and that had little or no meaning. I saw how this self-absorbed life led to conflict, injustice, and unhappiness and I swore to myself while standing on that street corner in Banchyau that I would never live my life solely in the mindless pursuit of monetary gain. I swore that I would find a way to make a direct impact on the lives of those I came into contact with. It was a critical turning point when I finally realized that my life meant nothing if I couldn't find a way to put my talents to use for the betterment of others who were less fortunate or less able. Now this is not to imply that I have a Messiah Complex, but I define my life by others. I realize that I am nothing in and of myself, and that I can only define my being by serving others. In the words of the psychologist Carl Jung: “It is only our deeds that reveal who we are.”
To further complicate this disorganized entry, I want to include some key concepts from one of my personal heroes, Ernesto “Che” Guevara. Many people don't realize that “Che” came from a relatively well-to-do background and was an M.D. before joining with Castro to lead the Cuban Revolution. I admire Che because he was able to envision a purpose that was larger than himself and saw that he could make an impact on the injustice that pervades society. He sacrificed, and eventually lost his life, fighting for something that he passionately believed would make the world better and would lead to the eradication of injustice and oppression. Che, like myself, was motivated by a love of humanity and a love of freedom. Che said in a speech following the Cuban Revolution: “Let me say, at the risk of appearing ridiculous, that the true revolutionary is guided by strong feelings of love….and, above all, always be capable of feeling any injustice committed against anyone anywhere in the world.. The outcome of today's struggles does not matter. It does not matter in the final count that one or two movements were temporarily defeated because what is definite is the decision to struggle which matures every day, the consciousness of the need for revolutionary change, and the certainty that it is possible.”
Now, to close out this entry and to further explain the reason why I care, I want to briefly return to the idea of a “center”. A “center” is a key defining event, emotion, person, or anything else that you cling to that gives you motivation and purpose. Working within the human services, we frequently come into contact with difficult and depressing circumstances that require tremendous strength to face. I believe that the reason many people in the human services burn out is because they do not have a “center” to fall back on. In times of difficulty I have a “center” I always fall back on. Following this entry I have included a poem I originally wrote over ten years ago that describes my “center”. This poem describes a very emotional event that occurred while I was in Taiwan. This poem has gone through many revisions and has been trimmed from 5 pages to 1.5 over the years. This is the final version that I arrived at three years ago. Every time I get discouraged or wonder what I am doing I read this and it reminds me of why I do what I do. This is what I call my “center”. Everyone needs one, or else life has little meaning. A center provides an anchor point from which we can create a context for our lives… This poem is a literary representation of my “center”. It has saved me multiple times.
===============================
I
A tight dark room with a pad on the floor
The cold, wet air slides under the locked door.
Thin bars of light pierce through the slot
Where scraps of food and water are slid in.
The floor is hard, and usually wet
With urine and shit, like an untrained pet.
In the dull, corner shadows it sits lopsided with its back
Twisted on thinly wrenched legs, too weak to walk.
II
It is all it knows, if it is something worth knowing
It is not sure what it is, but parts of it look like the fingers
That bring its food. But it can’t go look to find outside
Itself attached with links of steel to the mildewed bedroom wall.
III
Its cry- shrill and penetrating- a dying person
Like a rabbit in a snare that shrieks like an injured baby.
It doesn’t know tears or sadness or joy
Just pain and hunger, or pain then nothing.
And always it is dark.
And always it is alone in the dark.
Meaning is meaningless in this world;
In the room.
The small dark room,
With concrete floors
With the single heavy door.
Being locked in this small world
Unable to escape
Is not so bad.
Living without the fear of death
Because it has not lived.
This it cannot comprehend alone.
That it first frightens, then sickens
And disgusts to anger towards its own-
That festers like its seeping sores
Where it’s restraints wrap around
Skeletal wrists.
IV
Then looking in I saw it—
Shining head
Glistening in moonlight.
Motionless.
Larger than the malformed
Shriveled body
It was attached to.
So large
It hung down
Bowed between atrophied knees
In reverence for its situation.
Now looking out—I still see it— a silent face,
Reaching into me with a child’s wide eyes;
Offering salvation in empty hands
Claw-fingered, clenched shut.
=================================
What This Blog is For...
This is just a start...so stay tuned. There is much, much more to come...