What can we learn about disability from other countries?

One possible thing that we could learn from other countries is to understand disability as a human right rather than a civil right.  Initially, one would think that disability rights are human rights endowed to every person simply by his or her existence as a human being; however, the more that I think about it, the more that I think framing disability in terms of civil rights might be more helpful in our society than framing disability in terms of human rights.  In coming to this conclusion, I understand that other countries do not have the history of fighting for civil rights that the United States has.  After recognizing a fight for civil rights by other marginalized groups of people in the past, our country has moved in a positive direction to acknowledge those rights, enforce those rights, and change societal attitudes about those rights.  We cannot say if those rights would have gained support had they been framed as human rights.  Although fighting for civil rights in every sphere is a continuing job, the fight for civil rights for other groups has proven successful, and therefore, may be the best approach to disability rights.  I recognize that in many ways, disability rights are different from other types of rights; however, I also acknowledge that the fight for disability rights is similar to the rights that many other minority groups have fought for throughout the history of the United States.  The interaction between disability rights and other things that we consider civil rights is important.  I believe it is vital to understand that the struggles many individuals with disabilities have gone through mimic the struggles of other minority groups throughout our history.  In recognizing that other groups have been successful in taking a civil rights approach, I think that those fighting for disability rights might also be successful in taking a civil rights approach.  Therefore, a human rights approach might not be the most appropriate approach to disability in the United States.

Another thing that we can arguably learn from other countries is to broaden the definition of disability and not speak in terms of a reasonable accommodation.  It would be ideal to have the rights of any person who identifies as a person with a disability protected and to have any accommodations necessary to make access equal.  However, the more I think about this in terms of the United States, the more I recognize that this might be too idealistic and not very realistic.  While I do think that we should attempt to broaden the definition of disability and not speak in terms of a reasonable accommodation, I recognize that it is very unlikely that would be possible considering our current political system.  In order to have a bill passed, a majority of the Senate and House of Representative must agree.  To assuage concerns of representatives and their constituents, certain concessions needed to be made.  These concessions included limiting the definition of disability and limiting the required actions to only those that would be “reasonable accommodations.”  While it might be ideal to change our approach to disability in the law, I do not think it is possible at this point, considering our political system.  Prior to changing the law, I believe we must change attitudes about disability.

I think we could learn from other countries in some ways and other countries can learn from us in some ways how to change attitudes around disability.  In my opinion, education around disability is the most important part about recognizing disability in the law and in society generally.  We should recognize that people with disabilities are people who deserve equal treatment.  We should work towards inclusion in the same way that we would for people of different races, of different ethnicities, and with different socio-economic statuses.  We should recognize that ideas around disability will forever be changing as our understanding of medicine and social dynamics change.  We should ultimately work to enlighten ourselves.  We can acknowledge where other countries have succeeded and where they have failed in their approach to disability.  This is how we will change attitudes, and ultimately change the law to reflect an equal and inclusive society.

Race and Disability

Just wanted to share the title of a good book on race and disability, since this came up last class:

"Blackness and Disability: Critical Examinations and Cultural Interventions" (2012)

It's edited by Christopher Bell, who was the former president of the Society for Disability Studies and was studying at Syracuse from 2008 until his death in 2009.

Post 4/16 class post

I was particularly interested in the conversations we had this week as they related to performance and identity.  We discussed how some of the author's we've read identify as "Crip," which can be very powerful.  While someone might be surprised with the adoption of what can be considered a pejorative term, this is not all that uncommon.

There are various groups of individuals who have been marginalized in one way or another, who re-claim and take ownership of terms that are highly charged.  Claiming and representing a culture, perhaps in the way it "should" or "deserves" to be represented is a bold move.  To me it kind of says, "we're tired of the BS" we are taking control of the ways in which we are defined, viewed, and represented.

On a related note, we spoke about whether or not it matters if the authors of the essays we read were or were not part of the culture.  To me is extremely important.  I've found the academic culture, especially in the law school, to be very problematic when it comes to disability.  We have some people who need accommodations for testing or for class, and generally, I've found that there is a certain quiet disrespect for individuals who are in that situation.  This is yet another attitudinal barrier.

So, having this book that all PWD wrote makes a difference because PWD in any context shouldn’t have to feel any less or feel as though they have to hide this portion of his/her identity.  Shouldn’t have to conceal, or not report, etc.  We need to acknowledge and accept how people self-identify and respect that.  

As Prof. Peace alluded to in class, the BODY really comes out of this.  How does the body identify, it is any person with an atypical body.  This isn't just about disability it is about difference.  It’s about the different body.  And the book we read this week, Criptiques, really pushed the envelope about disability and identity.

We shouldn't all be expected to fit into one type of performance.

Self-Publishing

In class, we discussed the importance of having the book “Criptiques” self-published and the effect that would have on the reception of the book.  While I agree with much that was said during class, I thought I would voice my opinion in a blog post this week. 

First, I think it is important to talk about access to the book.  By self-publishing the book, the authors were not only able to keep the cost of purchasing a physical copy of the book down, but were also able to offer the book for free online.  By offering the book for free or for a very low price, the authors are allowing so many people to access the book that wouldn’t have otherwise been able to access the book.  Many individuals with disabilities, because of some of the institutional biases discussed in the book, cannot afford to purchase a pricey book.  If the authors had approached a publisher in order to have their book published, it is likely that the price in printing and selling the book would be much more expensive, and many individuals with disabilities would not be able to purchase the book.  The stories in the book are about people with disabilities, by people with disabilities, and in many ways, for people with disabilities.  Many of the stories are empowering for individuals with disabilities and show individuals with disabilities that they have a community of support that involves individuals who experience the same types of discrimination.  For those reasons, it is very important that individuals with disabilities be able to access the book.  However, individuals with disabilities are just one target audience for the book.  The book is also important for individuals without disabilities.  This book challenges many of the ableist notions that individuals without disabilities hold, yet does it in a way that is interesting to read.  Individuals without disabilities would benefit from reading this book by understanding the effect that actions taken by everyone within society have on individuals with disabilities.  I think that individuals without disabilities, especially those that would benefit from the type of education this book provides, would be more likely to read the book if it is offered for free online.  Therefore, the entire society benefits from self-publishing this book.

As we had discussed in class, there is one downside to self-publishing.  Often times, people don’t see the book as being as legitimate as a book from a reputable publisher would be seen as being.  This can become a substantial barrier particularly in the education context, where many academics would be hesitant to use a book that did not go through the standard publishing process in teaching students.  There is almost an assumption, which is unfounded in my opinion, that a self-published book is less important or less informative.  However, the stories in this book are informative about issues facing individuals with disabilities and are important in spreading a message regarding disability discrimination.  However, in my opinion, the benefits of self-publishing outweigh the costs.  Ultimately, I think that self-publishing the book sends a message outside of the book’s content:  the authors aren’t interested in making money off of the book but are instead interested in educating society on the experiences and issues for people with disabilities.

Design opportunities in bicycles for people with disability- from Xiaoyu QI and Xuanmu Yan

thought after class

  In fact, I have lots of things I want to say after the class. About the suicide, about the life and about the death. We have discussed about the commit suicide before and I said that it is an irresponsible behavior. Because I believe people will never be alone in the world, there must be someone care about you, no matter your parents, your brothers, your lovers or someone else. Therefore, before the commit suicide, people should consider about those people who really worried about them.

  We know sometimes life is going difficult, I believe everyone had faced the disappointment somehow. However, as a human, people should control the emotion and be brave. As I heard from the class, lots of people choose to end their lives in April and May because after the winter, they still do not see any hopes, therefore they decided to do the suicide. I kind of agree of this idea and I think we need to pay more attention to take care of those people. I do not mean take care of their live, I mean to do more talking with them, show those people the positive in their lives. As I know, lots of people end their live just because a suddenly thought. They may just fall into that thought and cannot come out.

  Hope will be one of the most important things in our lives, it can push us moving forward and make people enjoy this beautiful world. Every bad thing will be changed if people always keep the positive emotion. After talk about it in the class, I think about how to help those people facing their problems. However, one big problem is we will not believe those people want to end their lives until they really do it. How can we talk with those people before the commit suicide happened. How can we be on guard against these suicide. These may be the important thing to reduce the commit suicide.

Just Ask

“. . . it would have been better, all things considered, to have given my parents the option of killing the baby I once was . . .  “ (201)

That’s what Peter Singer explained to Harriet McBryde Johnson.  It’s very revealing, I think, to directly proclaim to someone that you can imagine her parents killing her as an infant, since they should not have expected her to have a fulfilling life, or because she would have been such a relentless burden to them, or because they might have preferred a kid who could do cartwheels, and then maintain that it’s not really about her.  Also telling that since he’d invited Johnson to Princeton to debate him, that decision would have been wrong even according to his framework:  She had a productive life.  But there is no sense that he recanted, or even qualified his dogma in the face (literally) of so powerful a counterexample when they debated that day.

After class, I kept wondering how it was possible that knowing Johnson hadn’t changed Singer’s mind, or at least planted some doubt about predicting the value of a life with disability.  I looked up anything he might have written about her, and found an obit he wrote for the New York Times.  I have to say that it’s very nice, if plagiarized and a little patronizing.  (It appears to be very closely based on, and not attributed to, Johnson’s writings about their meetings, but I won’t talk about that at the moment.  See for yourself: www.nytimes.com/2008/12/28/magazine/28mcbryde-t.html?_r=1&) He acknowledged the usefulness of Johnson’s life, as well as his regard for her, though without commenting in any way on how her existence might contradict his belief system. The title of the piece is “Harriet McBryde Johnson | b. 1957 | Happy Nevertheless.” It confirmed an impression I had, that Singer is so situated inside his own head, his own experience, that he cannot imagine the view from another perspective or an understanding outside of his own.  I don’t think I mean this in a psychological way, but more ontologically.  His reality is reality.  He had to qualify Johnson’s life - she was happy even though she was disabled - because that was how he saw things, not how she did.

In the obit, he wrote:

I know that surveys have found that people living with disabilities show a level of satisfaction with their lives that is not very different from that of people who are not disabled. Have people with long-term disabilities adjusted their expectations downward, so that they are satisfied with less? Or do even severe disabilities really make no difference to our happiness, once we get used to them?

Again, telling.  There’s an answer to this question IF YOU JUST ASK SOMEONE!  But apparently he hasn’t, and because he hasn’t experienced first hand (yet) what it’s like to have a disability, and because he understands in so objectifying a way, he doesn’t know the answer to this most fundamental question.  If you’re promoting such a nocuous idea, that certain lives are not worth living, you should probably make sure you have the information you need to know if your assumptions are correct.

Another quote from the obit:

I tried to persuade Johnson that her attribution of rights to humans with severe intellectual disabilities had implications for how we should think about animals too, since they could enjoy their lives as much as, or more than, the people whose right to life she was defending.

I wonder how he knows this.  Is there research comparing the life enjoyment of, say, nondisabled chickens to intellectually disabled humans?  Or is his assumption, that the nondisabled chicken enjoys life more, based on his own prejudices? 

Singer is interesting to me because he makes so reasonable such a horrifying proposition: Murdering people is acceptable as long as you possess the knowledge of whether their lives are worth living.  Looking at his ideas in a broader context, as the radical outgrowth of the medical model that has for so long been so damaging to people with disabilities, I can see their evolution.  It’s Eugenics, and though it always seems like a cheap shot, it’s the same idea that supported the Nazis’ Final Solution:  Some people have valued lives and some do not, and the people in power get to make that determination.

How can the baby you once were be separated from the adult you are now?  For the individual, it can’t.  The person you were then grew in a distinct and unpredictable environment, with distinct and unpredictable experiences into the person you are now.  But for the person objectifying you, that continuum doesn’t really exist.  After all, he didn’t observe it.  Singer’s economic, positivist, cognitively dissonant, dispassionate, clinical, eugenic (pick your adjective, I can’t decide) dictum reveals his world view: He is a scientist who does not accept the uncertainty principle, a humanitarian who only recognizes some people’s humanity.  He has faith that his unexamined tenets allow him to know what’s best for others, and he doesn’t even need to ask them.  It’s the definition of ableism.

Johnson, H. (2005). Too late to die young: Nearly true tales from a life. New York: Henry Holt and Co.

Singer, P. (2008, December 28). HARRIET MCBRYDE JOHNSON | B. 1957 Happy         Nevertheless. New York Times. Retrieved April 9, 2015.