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.

New post, a bit behind schedule.

I had a big star in my notes this week next to something that was said in class this week.  I'm not sure if I wrote it down exactly as it was said, but it was something like, "We need to shove this stuff down kindergartners' throats."  I had a big star next to it because I agree, and I liked the line.

Now my question / curiosity is how does one accomplish such a task for a group of individuals who are so young?  Beyond some of the obvious changes, like getting rid of the short buses, or having working lifts on all school buses, is there another way to actually teach about ableism?  Or is this really something that needs to be done subtly when it comes to younger children?

I recall some discussion about inclusive education where we discussed some of the benefits and downsides to the approach.  I was thinking about this because other than using this approach to create an environment where everyone has access to the same space, I have no idea where I would think to begin combating ableism.  My first inclination is to look at the educational environment at an early age- the time during which young individuals are learning and developing their attitudes.

But as we discussed, inclusive education isn't always "inclusive" for everyone, and some people prefer to be in different spaces at certain times.  But this approach to education seems to be taught heavily in this program.  Unfortunately, I haven't really been taught about anything other than our current system, or this inclusive system.  So I guess I'm looking for something else if anyone can recommend something (maybe something I haven't read & should?).

cartoon

Just saw this and wanted to share :)

Now, we only have to change "to-may-to" and "to-mah-to" to "disabled person" and "person with a disability" and we have a great little thought... or maybe give the tomato a physical disability?