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.

Life or Death: What really matters?

Humanity is obsessed with death.  Various religions provide different theories on what will happen after a person dies, people play games or go to fortune tellers that speculate when and how they will die, and people make plans for the end of life and what will happen with our loved ones after we die.  A few people even learned to profit from our obsession with death charging people money for coffins, urns, and funeral services.  Television show after television show presents the question of whether a person would want to know when and how he or she will die.  However, when we talk about death, we often discuss it in relation to the death of other people rather than our own deaths.

In a way, death controls our lives; however, we somehow find a way to overlook death and forget about it throughout most of our daily activities.  While death is on the backburner for many people within society, people with disabilities often have death forced to the forefront.  Whether individuals with disabilities like it or not, their families, their friends, and their doctors tend to focus on the death of the individual with a disability rather than the life of the individual.  There is an assumption that individuals with certain disabilities will die young, and their deaths become more important than their lives.

In Harriet McBride Johnson’s book, she discusses how her death was a focus from the beginning.  Some of her first memories include realizing that she was sick, that she was different, and that she would die much sooner than other children her age.  For many individuals with various disabilities, the first question that family and friends ask after the disability is discovered is whether the disability will affect the person’s life span.  It seems almost like, for a person with a disability, when he or she will die is more important than the life the person will live.

The expectation of life or the expectation of death becomes a self-fulfilling prophecy.  For example, Harriet McBride Johnson discussed how when she contracted pneumonia, she received much needed care from other people, but she also wondered how many other individuals with disabilities died because they didn’t receive the same standard of care because those who would have been providing the care expected the individual to die.  The expectation of death is not only acknowledged by the person with the disability but can also determine whether that person continues to live.  Harriet McBride Johnson discussed the fear that she had when she first realized that she might outlive her parents (that she might live long enough to feel the pain of losing a person she loves).  Realistically, this is a problem that every person has to face.  We do not know when we will die, and we do not know when the people we love will die.  Therefore, nobody knows when he or she will experience loss.  However, we often refuse to face it.  We refuse to think about those thoughts that we know will make us sad and depressed.  Instead, we tend to avoid the subject or when confronted with the subject of death, talk about it in terms of other people rather than ourselves and our loved ones. 

However, when it comes to individuals with disabilities, many people force the individual with the disability to talk about death.  Those with a “terminal disease” are often encouraged to enter therapy to talk about their deaths.  If we are all going to die, then why should only those people with disabilities be forced to confront the thought of death?  If we acknowledge that there is no way to know exactly when and how any person will die, then why do we force individuals with disabilities to think about the time and the manner in which they will die?  If we wouldn’t  want others to force us to confront our own immortality, then why do we force individuals with disabilities to do that?  I fear that by forcing individuals with disabilities to think about their deaths when many other people do not, we are sending the message that the lives of individuals with disabilities are not what matters, but rather the deaths are.

Thoughts after April.09's class

First, I am so surprised about why there are so many people want to commit suicide during April and May, and I am also shocked because of the reason that people need to pay the fee after they are saved. I heard a news about a women committed suicide because of her finical problem, and her neighbors took her to a hospital which her insurance cannot cover the cure fee, and then, this hospital saved her life, however, at same time, the high medical fare makes her life miserable. I do not really know too much about America’s policy, but sometimes, it seems so cruel, actually.

John Hockenberry’s situation is so familiar in my country, this is also a common issue in nowadays society. Their is a research in my country, researchers pick up 200 people on the street to ask the questions about people with disability, 63% people didn’t see the people with disability during this week on the street, downtown and 10% of people didn’t see the people with disability half month, others thought they already have half year without seeing any people with disability on the street.

About the reason why people are not always seeing people with disability, some people thought they might not like going outside, but, most of them thought the situation is caused by the fact that public environment and transportation are not accessible enough. In our country, few bus and taxi is accessible for the people with disability, and the guide dogs are not allowed to be taken to the bus. The train and metro are also not convenient at all, the ticket entrance is too narrow, there is no chance that wheelchair user can get through it. Taxi doesn’t like to take the people who use wheelchair because they are afraid to get tickets when they have to stop for a long time to help wheelchair user. Even there is just a small foot step, it could be a wall for people with disability.

Thoughts on class discussion

I want to start by clarifying a point I raised in our last class. In our discussion of Peter Singer, and utilitarian philosophy more broadly, someone raised the point that she felt troubled that in some ways, that line of reasoning made a lot of sense to her. I understand that sentiment when it comes to, for instance, thinking about spending the same amount of money to save one life versus ten. That’s why I raised the argument that utilitarian arguments that marginalize people with disabilities, who as Clara pointed out can be costly to support, only hold weight within our present economic system and the underlying ideologies that perpetuate it. I don’t think that can be taken for granted. In line with this argument, Johnson makes the poignant statement that she has “trouble with basing life-and-death decisions on market considerations when the market is structured by prejudice” (p. 207). I didn’t raise this point to suggest dogmatically that socialism or some other economic system will eradicate ableism, which I certainly don’t think is true. While a non-capitalist system would go far in addressing the material conditions that disproportionately disadvantage and disenfranchise people with disabilities, ableism is an ideology with deep social and cultural roots that will not disappear under an alternative economic system alone. However, I wanted to acknowledge the fruitlessness of utilitarian philosophy that’s rooted in economic arguments that take for granted the present economic system and which, in so doing, inherently circumscribe the policy prescriptions plausible. Capitalism is antithetical to a socially just society and I think, in imagining alternative, non-ableist visions of society that we want to work towards, as we were toward the end of class, we have to be thinking post-capitalism. 

That being said, I also realize that thinking more toward revolution than reform is probably a testament to my able-bodied privilege (although I think there’s also white, class, and other forms of privilege at play in focusing on legal reforms that sometimes require privilege to even be able to access/appeal to). However, feminists have a long history of imagining alternative visions of society and I think this is a worthwhile endeavor in struggling against all forms of oppression, and doing so certainly doesn’t preclude working toward reform in the interim.

I also want to discuss some of the really interesting points raised about education. I agree with Dani that “education-for-all,” or the idea that education is the ultimate aim/panacea for social problems, is hugely problematic. We see this all the time in the “college-for-all” discourse that inherently devalues the lives of many people with disabilities and also perpetuates the hierarchical valuation of different forms of labor. That being said, I think this debate comes down to how we’re defining education, which for me is way more than schooling/learning and is instead something that takes place in all realms of life. So in the example Talina raised of a person who’s “severely disabled” and the way in which “education-for-all” devalues and marginalizes that life, I think the meaningful connections that form in relation with folks with severe disabilities absolutely qualify as education. Conceptualizing education in that broad sense, then, I think education can be viewed as a worthwhile aim for everyone.

I also want to push back against the idea that human nature is to be selfish and that we have to learn to be altruistic. I think that idea is too often and too easily taken for granted and to suggest that we can know human nature seems really presumptuous to me. I don’t think there is any essential human nature that exists outside of the social, cultural, historical, and economic conditions that shape us. A hegemonic conception of human nature that pervades much thinking in the U.S. today has absolutely not persisted across time and space and, rather, is deeply culturally rooted. I just wanted to raise this to suggest that we don’t have to teach people out of selfishness in order to foster a more just, non-ableist society, but, instead, we have to change the social, cultural, and economic systems that teach people to be individualistic/selfish/self-centered in the first place.

Re: Our 4/9 Class

I was thinking more about "situated autonomy" after our last class.  We talked a bit about how anyone can be autonomous with the right support system, and within reason.

They way that each individual leans one, relies on, depends on [or whatever you want to call it] can be very different depending on the circumstances.  For this reason, among others, I agree that we need (society in general) re-think and/or critique our perception / understanding of what it means to be autonomous.  It is not uncommon, as we discussed, for people to conceptualize autonomy as success that is associated with money and "things."

I think it would be very difficult to change people's (in general) desires and wants away from valuing material things.

On another note, one thing I would like to mention when it comes to autonomy reminds me of something I experienced last summer.  I was fortunate enough to visit the Facilitated Communication (FC) Center in Venice.  The use of FC is pretty controversial and many people are skeptical about it.

At the same time, the form of communication is either de-valued, not respected, or not accepted by many people in the general public because it isn't spoken verbal communication.  What I find interesting is that many people who are neuro-typical probably consider themselves to be autonomous and view "normal" spoken verbal communication as superior– and this is silly in many ways.

Think about how many times people need advice, ask questions, or just don't know what to say or do without leaning on or confiding in another person.  Most times after these interactions take place, an "ordinary" person would consider themselves to be completely autonomous in expressing or communicating the very thought  that developed throughout those exchanges.

Many people probably wouldn't consider how that interaction could be considered a support.  Most people, if not everyone, needs some support in some way.  There is continual interdependence between human beings, but I don't think many people acknowledge that.  Or maybe they do and don't want to accept that- I'm not sure.  But we are not as individual as we might want to believe.

So, it really is just silly to perceive someone who needs a particular support, as any less of a person when we all generally need some type of support depending on the situation.

Since I joined the orange ability even, we found several issues of those sport tools, and I think this activity is a pretty nice opportunity to make designers obtain inspirations. As a design student, I tried to find out those problems, so that we might have a chance to improve it. Here are some examples for those issues which we realized based on our personal user experience and the info from our orange volunteer interviewees.

The bicycle for people with disability is a pretty cool design, it is really easy to use when people only go straight, and it’s saving power. However, when people want to turn around, issues will come out. The front wheel will conflict with the knee joint, and it also becomes hard to use. Another issue we need to think about is how to find a way to develop a bicycle that can go backward, because we have such experience when we sit in this bicycle and went to a conner, if there is no one helping us, we won’t know how to go back to the main road.