Although I come from a very conservative family, I do not share any of my parents political viewpoints. Indeed, when it comes to politics I keep my mouth shut at all family events. I never express my political views because I know they would be upsetting if not shocking to my siblings. What separates me from my family is political and personal. None of my siblings or extended family members encounter the stigma associated with disability. As many people with a disability can tell you, especially those with an obvious physical disability, disability is the perfect cure for a big ego. Just when my ego becomes over inflated a stranger will come up to me and applaud me for being able to get in and out of the car or even more remarkable being able to read. Wow, these strangers will say, you people are amazing. Ugh, talk about one's humanity being reduced to nothing.
The only family member I shared my political views with was my father. We were an odd pair when discussing politics. He was deeply and passionately conservative. He also knew exactly how much I deeply resented people seeing my disability first and humanity second. This, I told him, made my political views change radically. He respected my views but despised my politics. I felt the same way about his political views. I respected him but could not understand why he felt a man like Reagan was great. Reagan was great at giving speeches I told my father and deflecting the real aim of his politics: make the rich richer and the poor poorer. In reply my father would laugh and ask how this differed from any other man in a position of great power. In the end I learned how to respect political conservatives through my father. Since his death and the rise of the religious right this has become increasingly difficult. Thanks in large part to the influence of George Bush our country, always a conservative place, has morphed into a country where complexity is perceived to be bad and science is somehow not to be trusted. How we got to this state of affairs is way beyond my ability to explain. But here we are, a country of extremes where we seek out evil doers, George Bush's words not mine, and conservatives talk about compassion and love. This sort of talk makes my blood boil and sends my blood pressure through the roof. Thus I have taken a few days to calm down so I can write about an essay I just read by Helen Rittelmeyer entitled "Towards a Bioethics of Love: What Conservativism Can offer Disability Activism". The essay in question appeared in Doublethink Online and was discussed beyond the usual conservative avenues--in other words I did not go out of my way to get pissed off.
I do not know anything about the author. One article by her was more than enough for me to bear and I shudder to think of what else she has written. Based on her article and its tone her expertise in disability is restricted to the fact her sister has a genetic disorder. Her sister is as a result prone to seizures, non verbal with severe to profound mental retardation. In layman's terms, Rittelmeyer writes, her sister is a "10 month old mind trapped in a 20 year old body". I know of no one that thinks this way except for a few extreme transhumanists and thoughtless people that fail to acknowledge the humanity of all humans, those with and those without a cognitive deficit. It is clear the author loves her sister very much and unlike many sees no need to search out a cure for her sister's condition. I respect these viewpoints and wish they were shared by all. But we diverge when the author mixes the love she has for her sister with disability politics. According to Rittelmeyer bioethics and questions of disability are pressing and that she can "offer a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity". Such sentiments mixed with politics are in my estimation nothing short of dangerous in large part because they conspicuously ignore the fact that disability rights are identical to civil rights.
The essay by Rittelmeyer does not begin to acknowledge must less accept a disability rights point of view. Disability is inherently bad, people with a disability needlessly suffer, are assumed to be in pain, physical and psychic, encounter endless adversity, and a diminished life. Moreover, disability is the defining aspect of an individual's life. There is no escape from disability. She writes "We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" Wow, no wonder disability rights remains grossly misunderstood by most people I encounter. At issue for the Rittelmeyer is dignity, human dignity, but what sort of dignity? Clearly, she and sadly many others cannot look past a wheelchair and see the human sitting in it for instance. This is the case despite the fact a disability such as quadriplegia is "less fundamental". What it is less fundamental from is not clear--perhaps her sister's condition? So what are people with a disability to do? In Rittelmeyer's opinion embrace conservative bioethics that require "the disabled and their families to show real heroism by accepting their suffering with some measure of grace and by swallowing their pride and accepting an unusual measure of dependence". Thus she goes on to note that "those who have had hardship thrust upon them have found some nobility in it"
Wow, civil rights and disability rights have been perverted in the name of love and conservative bioethics. The last thirty years of legislative initiatives, the independent living movement, and decades of activism have been replaced with an expectation that we people with disabilities need to "swallow our pride" and be "heroes". I see nothing heroic in having my civil rights stomped on. I see not reason to "swallow my pride" when treated like I am anything less than fully human. This is outrageous until I realized that some how "reasonable accommodations" have been transformed into charity and choice. The good person with a disability, the one with honor, accepts their stature in life: dependent, in need of hand out and happy for any societal largesse. The bad disabled person is one who demands equality: the right to get on and off a bus or airplane. Worse yet, expects to be able to vote, get into governmental offices and actually enjoy the fundamental rights all Americans take for granted. What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc.
Most troubling to me about Rittelmeyer's views is that she is familiar with disability issues. For instance, she raises a good point that some disability activists insist that disability is solely a social problem. That is disability activists are too closely tied to a rigid social model of disability. This point has been made by many within and outside the disability rights community. It is an issue, one that has not as yet been resolved. But this does not mean the social model of disability can be ignored just as the medical model cannot be dismissed. This nuanced point however is not going to be picked up on by the vast majority of her conservative readers who will think: "finally a person that makes sense and by extension gives us the power to turn down all those expensive things disabled people want like special education and elevators in school". The bottom line is that a bioethics of love or conservative view of disability is a giant step backward, pun intended. Disabled people have rights and when they assert them are disliked. Rittelmeyer wants to undermine hard won civil rights earned by people with a disability that are largely ignored and replace them with an expectation that we should "swallow our pride" and accept social dependency. I think not. In fact I can think of much more colorful language to express myself that would fit quit well within a locker room. But that is exactly what Rittelmeyer wants and I refuse to accept the bait and act the part of the uppity cripple. You see I have dignity. I have civil rights. Ain't America great that someone like me that has not walked in thirty years can wield a pen. I am feeling the power today.
16 comments:
The insistence that the subjected group accept a status based on the ephemeral good will of the dominant group is the traditional approach of conservative thinking. I remember constant teaching from conservative religious leaders that the problems of America were essentially that too many groups were improperly concerned about their rights. Even the language about the subordinate group members needing to be "heroes" who "swallow their pride" and accept their position in life "with grace" is the same. The groups improperly concerned about rights curiously never included able-bodied white men.
Yanub, You make an astute observation about conservatives and the rights of the disenfranchised. The logic of the argument does not change but rather the words used over the years. Amazing how able bodied white men never acknowledge the inherent inequality of the accepted power structure. Perhaps this is what separates me from my conservative siblings. I encounter bigotry and ignorance while they do not.
The author is a woman who wrote a piece and expects respect because women before her insisted that women are people first--citizens with rights, not property or lesser beings who must rely on the whims of the powerful... yet she does not see the importance of these things for the people SHE deems as less.
The trouble with having your status, privileges, etc being given to you by others is, of course that others can then take them away. Citizenship and its rights are inherent in each person--with and without disabilities.
That a conservative author believes and presents without embarrassment that conservatism means that the power to assign or withhold value belongs to the powerful--and everyone else's job is to accept their assignment--explains everything.
Unacceptable.
Terris, Thanks for your thoughtful comments especially as they relate to women's rights. I wonder if I am the only one but I worry about an unacknowledged divide that may or may not exist. Here I refer to parents and siblings that care for children/adults with a profound cognitive and physical disabilities and disability rights activists. I have found these two groups see disability from a different perspective and that some tension exists. This is something I want ot write about at some point in the future.
I think I see more points of agreement between you and the writer than points of disagreement as I read the article, and this is important and offers some hope. But the points of disagreement are strong and crucial. She needs to talk to wheelchair users before making some of her statements--I do think people are teachable. What is not occuring to her is very obvious to us--someone's help is still not going to get us into a building if there's no ramp and a 200-700 pound chair, plus someone risks injuring us. Plus themselves--does worker's comp include moving an employee?
Why does she assume we wouldn't accept help where it's useful and we need it? I had to ask for help from a stranger going to a different part of a medical building yesterday because I forgot to take the dr's office # with me and with one doctor out that day, I'd have sat outside for 15 minutes waiting for someone to open the door.
*But what happens when no one is around?* I have this happen even in public places. A lot. Or other people aren't physically able to help because of their own back, knee, pregnancy, etc. issues. Very understandably!
People are willing to help occasionally, but all the time? Not most people. I found the office assistants wanting to get an automatic door opener so they didn't get interrupted as much and so I wouldn't have to wait. When I can't get into the bathroom and there are no female coworkers around at a very busy place (people have other places to be and meetings to go to), is it really appropriate for me to have to ask my male colleagues to take me? Or a teacher to ask her students? I could see the resentment on my direct supervisor's face when I asked coworkers a few times a week to move a chair for me or pick up something I dropped that I could not get--his attitude is that everyone should be 100% independent and talked about this one time. Unfortunately it takes 3+ years to get an assistance dog. So yes, while some coworkers act with love, unhesitatingly, as I would also do, others feel resentful, even when not themselves asked to help. With the bureaucracy of the workforce, people would want help formalized in job descriptions. The writer's ideas of what help and love mean, as Claire says, are pretty vague.
Love and autonomy--we need both. What if she replaced "the disabled" with women or black people? Whoa would that be an offensive article. Why do we always have to offer up such examples or substitutions for people to say, "oh"? Love sometimes won't come until we have autonomy. Civil rights came first for black people, then increasing social acceptance.
My parents were very conservative when I was growing up but have become pretty darn liberal and support universal health care and other initiatives since they've experienced the devastating financial consequences of illness under self-employment (and from my sister's and my hospitalizations growing up)--and have seen the same happen to many of their clients. They've become more liberal in other ways too and some of my friends say the same is happening to their parents. Severe illness can be pretty liberalizing.
Frida, Glad you were inspired to read the original article. The woman in question heart is in the right place and we do indeed share similar viewpoints. We differ significantly politically and her views are dangerous if ever enacted upon. I for one will never rely upon the kindness of others for a host of reasons. To me, and I sound like a worn out drum, disability rights are civil rights, a point that is held by too few. Trying to disentangle the views of the author would take a great deal of time and I am not sure the end result is worth the effort.
I think she has a lot of idealism and ignorance. Even when restroom assistance or nursing care is provided by friends and family, that has to be formalized and scheduled--and a lot of people will fail to uphold their commitment. She also doesn't understand how people are already suffering. For a disturbing religious perspective on her article:
http://www.firstthings.com/blogs/firstthoughts/2009/06/10/toward-a-bioethics-of-gods-love/
Gosh, William, I read this article in a totally different way than you do. (Not surprising, I guess, since our politics diverge sharply, but still.)
When she says "a conservative bioethics, one that sees love, not autonomy, as the basis of human dignity" I see her saying that your worth as a human is not measured by how autonomous you are; i.e., a disabled person who needs help is not less of a human because of it. I get that you wouldn't require some of the help that you do if people would do the right thing, and I agree completely, and in your place would probably be a bad cripple too, but I think you are missing her point here.
"We cannot reduce a man to his disability, but neither can we look past it. Look past it to what? An imaginary person minus that disability?" I read this as saying that, for instance, you are not defined by your wheelchair, but there's no point in trying to deal with your situation as though you didn't have it, or try to imagine you without it in order to imbue you with some dignity. It's the kind of thing I've come to expect you to say. You have your situation, and for good and ill, it's yours. Isn't that what she's saying?
"What Rittelmeyer wants is a return to an old era when people with a disability were trotted out a few times a year--Memorial Day, Veteran's Day, Mother's Day, etc." I don't see her saying that at all.
This: "It is fair to ask whether casting people with disabilities as moral heroes can be meaningfully distinguished from treating them as talismans, drive-time radio stories who happen, rather inconveniently, to have their own desires apart from what we desire of them. Don’t we cringe when the local news imputes great heroism to a handicapped person simply for moving on with his life?" is something you say all the time, and I get you. So one might ask what she's talking about when she says what she does about accepting dependence. There is a blog I read about a woman who went through all kinds of horrifying experiences in dealing with infertility and eventually had twins through IVF. To her shock and surprise, she became pregnant the old-fashioned way when her twins were toddlers. During the second trimester, due to being 40 years old, she did amnio b/c if the baby were not perfect she was going to abort it. She said that she knew she couldn't deal with the complications that would come with a special-needs child. I don't know what your views are about abortion. I thought it was pretty dreadful that her poor unborn child was going to have to go through this trial by ordeal, as it were, to be acceptable to his mommy, and I wondered how she would cope if either of her other children became disabled.
I think Rittelmeyer's main point is that needing help or being dependent doesn't take away from a person's value as a human. All of the disability rights in the world would not enable her sister Martha to be autonomous. Regardless, Martha is a person and her family loves her. If Rittelmeyer were to write an article about disability rights, it wouldn't be this one, b/c that's not what it's about.
Laura, Thanks for your interesting comment. Rittelmeyer makes a number of good points in her article. Yes, she decries casting disabled people as heroes, a popular media penchant. I share this point but am all too well aware this is a minority view point. The vast majority of people in America love this sort of story--a disabled person overcoming a devastating disability. This sort of imagery is used daily and forms the core of charity fund raising. Never do I see an a story about an average middle class man who happens to be paralyzed, has two kids, a wife, dog, and a house but cannot afford a mono ski because they cost $4,000. This story critical of the adaptive sport business does not exist.
As for the point that Rittelmeyer makes on needing help and dependence, such help and dependence need not be necessary if we as a society were committed to making our environment accessible for all. Instead, we need hopelessly compromised legislation such as the ADA to insure a token effort is made to to include access. More to the point, when a person with a disability asks for help or needs help it places the individual in a position of dependence. I for one hate to do this and will go to great lengths to avoid ever asking for help. Why inconvenience myself this way if help is readily available? Because I know asking for help reinforces negative assumption many if not most make about disability. In short, Rittelmeyer is preaching to the choir, those that have an open minded view of disability. This does not reflect reality as I know it where bigotry and ignorance abound. This point was reinforced to me the other night when my son and I went out to eat dinner. We were eating at a place we had never been to. When we were seated the served gave my son two menus while I received none. Annoyed, we said nothing. When we ordered the server asked my son "what will he have" meaning me. I stated that I would order for myself and the server looked shocked and stated "I didn't think you could read". Even by the end of the meal the server did not learn as he placed the check in front of my son as if a teenager would pay for the meal. Do you think the server in question, not out of the ordinary in any way, assumed I was equal to a patron that walked into the restaurant? This experience, not uncommon at all, is why Rittelmeyer and a conservative bioethics is doomed to failure. I know as does my son exactly what prejudice and ignorance feels like. We do not search for it, it is everywhere.
It's funny, as I had just written an article on disability rights in the liberal and conservative intellectual traditions which also posits the potential for an alliance between disability rights advocates and conservatives in the bioethics arena, except on disability rights terms instead of on conservative ones. I'd be curious for your thoughts. http://www.thenewatlantis.com/publications/disability-politics
There were some subtleties that got edited out for space reasons - the original article was more critical of both liberalism and conservatism, but I hope it will serve to educate conservatives a bit more about the disability rights framework. A friend of mine sent me this quote which I think captures my perspective fairly well:
"Liberalism is unable to articulate or demonstrate the kind of moral values that must undergird any serious movement of social transformation; the critical link between personal responsibility and societal change is missing on the left. Conservatism, on the other hand, still denies the reality of structural injustice and social oppression; to call for individual self-improvement and return to family values while ignoring the pernicious effects of poverty, racism, and sexism is to continue blaming the victim." - Jim Wallis
William, I think Rittelmeyer's point actually addresses your stupid server. [I think that if I were you I would have had a stroke by now from sheer aggravation.]
The server equated ability, autonomy, with personhood, which is what Rittelmeyer would like to change. And again, her sister will never be able to read a menu, but she's a person nonetheless. The viewpoint that you aren't like everyone else and thus aren't entirely human makes people like her extremely vulnerable because at least you can holler and scream, and she is at the total mercy of other people's good will.
I've not ever been in a wheelchair, even briefly, except leaving the hospital two or three times. But I'm constantly seeing "accomodations" that strike me as entirely stupid, and I think that the person who designed them never physically went through the process of walking up the ramp and thinking, "if I were in a wheelchair I would have to open that door" or whatever. The public library in Memphis, before the nice structure they have now, did have access - it was through the door into the children's section, which was kept locked so that the kids could be left in there while the parents were elsewhere. To gain entry, you had to ring the doorbell and wait for the staff to let you in ... in rain, blistery heat, whatever. There were other doors, but they were not wheelchair accessible. I saw this and was appalled that no one apparently had thought it through. I know you must have to deal with crap like this all the time. The thing is, that library door most likely met the letter of the law, so for people who had a checklist of disability rights and who didn't look any farther, it would have appeared just fine. For things to get better, we'll have to get past the letter of the law and actually think about people as people - it's kind of like what I said earlier about Obama's Special Olympics comment revealing his shallowness. I think Rittelmeyer's focus on the disabled person as a human rather than as an accessibility problem is on the path to a solution here.
Ari, I will be sure to read the article you mention. While my politics can only be described as radical, I have no allegiance to any political party or point of view, conservative or liberal. Anything that puts forth a disability rights viewpoint is okay with me. Sadly, every politician I have ever liked has proven to be a bitter disappointment and I can no longer be a true believer at any level.
Laura, Yes, Rittelmeyer and I agree that all people with a disability are human first and foremost. The difference between us is that she assumes this to be true. I know in fact it is a cultural fiction. I also agree that unlike her sister I can and do defend my civil rights. Her sisters inability to care for herself independently makes he among the most vulnerable citizens in this country. The way those with cognitive and physical disability are treated in this country is a national disgrace.
For real practical change to happen we need people with first hand experience with disability to be present when decisions are being made. I encounter obstacles such as you point out daily. It is a lack of interest, care, and value placed on access. With a person that has a vested interest present things are much harder to gloss over.
Finally, I appreciate your comments. You always make me think and refine my views. We may disagree politically but I suspect our ultimate aim, equality, is the same.
Ari, I just read you article "Disability Politics" on the New Atlantis. I could not have written a better more insightful article myself. I agree with all the important issues you raise. Personally, I find disability rights advocates and conservatives to be strange bedfellows. I for prefer Leftist politics but not to the exclusion of innovative ideas. Really, superb writing in your essay.
I'm glad you enjoyed it, William. Thanks for the kind words! I'm writing another right now for the same publication about how media representations of disability have always fed the eugenics movement - then and now - and that it is important for the disability rights movement to be supported in responding and debunking this sort of thing. I will send you a copy when it's out in a few months. In the meantime, think about blogging this article, if you are so inclined. :) I'd certainly appreciate your feedback.
Ari, In the next day or two I will indeed write about your article in conjunction with an article that appeared on Sunday in the NY Times on gay rights.
As for media representations and Eugenics, today and in the past the media was a major player. Amazingly, few people really know much about the Eugenics Movement. I suspect the horror of the Nazi Holocaust dwarfs anything that took place in this country. But the Eugenics Movement was important and should be studied in far more detail. I assume you know the book War Against the Weak.
I do - it is a very informative text.
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