Please read the article at http://www.aladin.wrlc.org/Z-WEB/Aladin?req=db&key=ALADINPROXY&url=http://proquest.umi.com/pqdweb?did=36517535&Fmt=7&clientId=31806&RQT=309&VName=PQD to discuss the ethical implications of medical interventions with related to disabilities. The PDF of the paper is attached below as a file. When you read the paper, think about the concepts that the author presents in terms of "disability" and "impairments". What do you think the cultural implications of the concept of disability? What do you think the salient elements of the genetics arguments are? What might be the "sides" that people take here in this debate?
Feel free to use this discussion space to think about the degree to which disability and impairment impact society, and classrooms in particular.
Wow I am a little bumed out because I guess my written response timed out and it would not let me post stating that it was a private site for members only. Anyway I guess I will have to recall my response from memory :(. This article was extremely intriguing to me. When I was a high school student, I worked for an organization called the National Council on Disability. I was at the NCD when the ADA (Americans with Disabilities Act) was passed. While working there I got to know a lot of the members personally. The chairperson at that time has a son who is a quadriplegic. Her son and I became very good friends. She and her son became involve in advocating for rights for persons with disabilities in the 1970's when my friend was not allowed to attend public schools. Well I should say that the public school system was not really accepting of him and his disability and did not want to provide the necessary equipment such as ramps, assistance, etc, for him to attend school. His parents were always encouraged to put him in a home for 'special people' where he could be provided with proper assistance. The only problem at this time was that most institutions were for people who were mentally and physically challenged. My friend is simply a brilliant individual. According to his mother he has always been above grade level. So she knew that an institution was not a place for him. To give a little background on him, he has very few motor skills. He requires a wheelchair, and a attendant to help him eat, drink, put on clothes, etc. He really has very little use of his hands. He can hit the knob on his motorized wheelchair to get around. According to him, he struggled a lot throughout his childhood with the medical community accepting him and the school administration system accepting him. His mother has said that everyone always had recommendations for them to accept that he would only end up being basically a detriment to society. She has told me numerous stories/accounts on how so many so called 'specialist' have recommended for her and her family to go to counseling on how to deal with his disability as he matures since he will be so dependent, etc. The point that I am making here is that my friend finished high school with honors, graduated Columbia University with honors, has two masters and a Ph.D in Theology. Yes he does require an attendant to help him with daily needs but he is self sufficient. He is currently a professor and counselor at a seminary in New York and is well respected in his field. He is also finacially secure based on his educational background and good investments. He is definitely one of the people this article debates. While I was reading this article I instantly thought of him and many of the other wonderful, progressive people I had the pleasure of working with at NCD. Most of the people I got aquainted with were children that were diagnosed during prenatal testing and recommended for termination. I think some of the salient elements of the genetics are one sided and downright destructive and discriminative. Yes there may be a lot of financial responsibility but I can't help but to think about how much pride some parents of children with physical disabilities must have when their child does exceed beyond an expectation. I think that the author of this article makes a interesting argument that people who are living with physical/genetic disabilities should be included in opinions on whether or not a pregnancy should be terminated based on genetic factors and/or prenatal testing results. Families need to know both sides of the situation and that can only be achieved when both sides have representation.
Andy's story above shares a story of how one person with a disability was treated by the schools systems in ways that seem to be clearly discriminatory, yet he has be able to achieve — and potentially contribute to society. I wonder if others have similar stories to share, or responses to Andy's suggestion about the ethics of information sharing in prenatal care.
A technical suggestion: When you log in each time, but sure to click the "Do not timeout my session" box. Also, many students compose their posts in Microsoft Word or another offline word-processing application, and then paste their replies.
This article discusses an extremely controversial issue. Beyond just women’s right to choose life, now, she has to choose whether to keep a disabled child. In the article it mentions that obstetricians are the largest proponents of eugenics, and however science fiction it may sound it actually does happen. In fact, a member of my extended family had an experience like this. My family member (who will remain nameless) lived already with his wife and healthy child. After a few years, they decided to try for a second child, and were excited to find out that they were pregnant again. However, as the pregnancy progressed the doctors were hesitant. After some testing, they discovered that this child would not be normal. The doctors insisted that they should terminate the fetus, but my family members would not budge. They ended up having a baby boy. Although I know that they love their son, he is a handful (especially as he gets older). Once not too long ago, I heard them refer to him as the cross they had to bear. And I have heard this sentiment repeated among other families I know that have disabled children, as well as, in Buck’s book on raising a mentally handicapped child.
These sentiments have led me to wonder what I would do if a doctor suggested to me to abort, because my fetus was impaired, would I do it? Or would I continue with the pregnancy? I have concluded with the discussion of disability and impairment. I truly think that if my child would have a biological impairment such as PKU or Downs Syndrome that abortion could be an option, because the child would never be able to lead a normal life. I question not only what kind of life I would lead, but also what kind of life would the child lead? As for the disability side of the coin, a child with a disability (defined as social barriers that are created due to discrimination and prejudice [669]), I would be more likely to continue through the pregnancy, because they would be able to lead a normal life and existence. A friend of mine was born with a few handicaps mainly no actual hands, only two stubs of fingers and a thumb on each arm. When I met him, I had all of these preconceived notions. However, he never has once asked for help, can draw portraits and things I will never be able to do, and is extremely capable in many other things that I find amazing. As Buck mentioned in her book though, her daughter Carol never felt the stares and the prejudices of people. My friend, feels them everyday. Although he would ever say it, I feel at times socially he feels left behind.
This again leads me full circle to what is right and wrong in a situation like this. Although I agree that the decision should be left up to the parents, this issue has a multitude of perspectives. On the far end, people could say any genetic disabled child should be aborted creating true eugenics. Closer to the middle would be the 1992 Human Fertilization and Embryology Act which allows termination beyond 24-weeks for severely mentally or physically handicapped. Near the middle would be parent’s or mother’s right to choose. Also near the middle, allowing for impairment abortions but not disability abortions. Finally, on the other side of the spectrum, all abortion is wrong. The most salient element in all of this is who has the right to decide what is sufficient and appropriate for abortion, or is there never a point where this is acceptable?
I found Shakespeare’s article on eugenics to be totally fascinating. Unfortunately, as a result of reading the article I have a thousand little thoughts swimming around in my head, many of which are contradictory. First and foremost, I found myself thinking of Carol Buck…on page 86 of The Child Who Never Grew, Pearl Buck made the statement that, “We must fight for the right of our children to be born sound and whole. There must not be children who cannot grow.” Having just read the article on eugenics, this statement really caught my attention. As I read on I found that Buck was referring to discovering methods to prevent children from being born disabled, as Carol was. Still, I wonder if in some small way Pearl Buck was referring to eugenics or if she ever thought of her life without Carol. The overt sadness in her writing suggests to me that she had a hard time believing in the value of her own child’s life.
There is another voice in my head: my father’s. A man of science, he is always ready to discuss and defend the finer points of Darwinism. The process of natural selection is a beautiful thing to him and admittedly, I agree. The fact that we now possess the technology to hurry along the process of natural selection is frankly too Orwellian for my sensibilities. Still, I believe in a woman’s right to choose in this situation. Ideally, the choice to terminate a fetus based on a thoughtful process of consultation with medical professionals and genetic counselors who are qualified and reliable as sources of knowledge about the disorder in question. Each termination should be determined on a case-by-case basis because just as we cannot make generalizations in the classroom, we cannot generalize in this context either. That being said, I do believe that some general rules should be laid out that identify situations where it is and is not acceptable to terminate a pregnancy based on the presence of a disability or disease. For example, I believe that there should be a time limit, the decision should be based on the characteristics of the disorder and the quality of life that the child is likely to have, and socio-economic status and the ability to care for the child should be taken into consideration. Finally, this decision making process should never be made available on the basis of gender or sexuality.
The recommendations that I just mentioned make this process more palatable for me yet this is in no way a black and white issue. For example, I wonder if it is possible for doctors to accurately predict the severity of the various disorders that might, under my previously stated “regulations.” Once, in my college years, I wrote a paper on Jewish medical ethics as it pertains to life and death situations. I found it fascinating how thin the line that determined whether care should continue or cease was drawn. Jewish doctors believe that any quality of life, no matter how small it may seem, is worth preserving and care must not be discontinued. Conversely, once there is no longer a quality of life and pain is present care must not be continued unless is can create a quality of life. Such a delicate balance may seem impossible to sustain but it is necessary. In the case of eugenics I believe that the only way to maintain this balance is through articles like Shakespeare’s: articles that question, authors that question, humans who constantly examine the gravity of this highly sensitive issue.
Having worked for several years as a contractor for the US Department of Special Education, my perspective on persons with disabilities has been mostly informed by a disability rights point of view. This article was the first I have read about the issue of eugenics and pre-natal screening; and admittedly, given my strong support of women’s rights to choose, posed quite a complicated argument about an issue with extreme complexity.
I have never personally been in a situation where I have had to make a choice about keeping or aborting a child based on provided medical knowledge or testing. In fact, I have never known someone who has had to make this decision either. It is hard to know how I may feel mid current in such a situation. However, what I do know is that without freedom of choice, powerlessness would predominate. Given that choice, without proper knowledge and understanding of medical facts and social biases, as well as narrative perspectives from many different points of view, I may make a decision based on the emotion of fear, rather than the combination of love and rational understanding and analysis.
To me, it seems that education about medical facts and social biases would be the easiest problem to solve. Whether through legal mandates or disability rights groups, providing pamphlets of information and increasing the availability of genetic counseling seems feasible. The main difficulty, based on the facts presented in this article, is breaking through those social biases entrenched within our culture and scientific community to provide potential parents with a more diverse and multifaceted point of view to make a truly informed and personal decision. It almost seems like a silent and acceptable collusion now exists between parents and doctors to accept whatever facts are presented without asking the tough questions, because this makes the heartbreaking decision somehow less personal, and thus less painful. In other words, doctors who have biases about the term “disability” will pass this bias along to their patients in the process of screening if the patients are not aware and advocate for themselves. (Admittedly, I would imagine that in the classroom teachers would have this same power) So – how do we encourage parents to recognize the importance of self-advocacy and seeking knowledge outside the medical community? How do we inspire people faced with such a painful and complex decision to ask persons living with those disabilities, or parents of those children, about their experiences? In what other ways could we help those parents reach out until they feel ready to make a decision based in love and understanding, rather than fear?
As a person recently diagnosed with a serious food allergy, I’ve experienced firsthand medical bias and the necessity for self-advocating. Unfortunately, as I’d love to think of doctors (ahem - and teachers? =) as geniuses who rarely misdiagnose or miss important information, they are, in fact, human and fallible – not only to mistakes, but to their own personal biases. The author addresses this problem, noting that “the main eugenic attitudes stem from obstetricians, who have been reported to be more directive in their advice to pregnant women, and more inclined to advocate termination of foetus’ with a range of genetic conditions” and the “role of science in contributing to this state of affairs.” While it seems commonly accepted to take doctor’s opinions at face value, there has been a recent movement towards self-advocating and knowledge. Online medical resources allow patients to research their symptoms and provide more educated perspectives on their conditions when they seek medical diagnosis and advice. My friend in medical school told me how there is a new trend in schools to teach medical students how to listen to their patients’ stories, because this allows for a more accurate diagnosis. In the meantime, until this movement catches on, there are still many doctors who hold to their own views and perspectives as most important – and any input from patient experience as being biased, and thus immaterial to diagnosis. From a patient point of view, again speaking from experience, this can feel threatening, intimidating, dismissive and condescending. For me, it was support within a community of people sharing similar symptoms and validation of my experience which gave me the strength to self-advocate despite feeling embarrassed and shrugged off by doctors. I would hope that in a similarly difficult situation of making a choice to keep a child based on pre-natal screening results, I could find an equally supportive community to navigate this process. The article suggests that while some such communities do exist, there is a lack and definite need for more education and more support.
So, I strongly agree with the author’s suggestion of increasing the knowledge of those making these difficult decisions from many different perspectives and points of view – allowing them to make an informed personal decision. The author suggests “to listen to those people directly affected by genetic conditions” as a way to learn the value of life with significant impairment – a powerful suggestion, indeed. I would like to take that insight further and offer suggestions of other communities and perspectives in which potential parents can seek and experience firsthand. As presented in the article, any one point of view taken to an extreme can be too simplified, although the clarity may seem inviting, albeit contradictory. Such a complex issue demands a complexity in the process of information gathering and decision making.
To play devil's advocate a bit here — do you think that some groups (define the word "groups" as you wish) would be more or less likely to make different types of decisions when it comes to terminating a pregnancy?
Also, Allison mentions the fact that online medical resources might provide benefits to patients. I would like to have you all think about that idea within the context of taking a wikicourse. Do you think that online resources benefit patients because the information might be vetted by more doctors, researchers and patients? Do you think the process of doing research about medical diagnoses might give patients an advantage because of multiple sources? I ask this, because we should discuss the accuracy of information in a place like a wiki (where multiple authors can edit an entry) and if that improves the quality of the information. What do you think?
Online resources (as any type of resource) needs to be "taken with a grain of salt." I think online resources can be an asset for individuals to learn more and develop a general understanding about a certain topic, however, in places such as the wiki, ideas and "facts" can be posted that are not true. As Allison mentioned, there was a study about Wikipedia with Encyclopedia Brittanica that showed little difference, but I have also heard of people posting off-the-wall "facts" on Wikipedia as well. Medical Diagnosis should be understood and researched, but it is a dangerous reality when people try to self-diagnose or go against doctor's orders (without another doctor's opinion). While there is an advantage to having multiple sources, there is a huge disadvantage when there is no proof of credibility of the source. Perhaps in some cases these multiple sources can improve the content on the wiki such as politics, history, etc. to have different perspectives since everything has bias. However, in medicine I cannot say enough that I feel it is so important to use the internet solely as a base and multiple doctors as the real resources.
Hmmmmmmm… this is a very interesting question about the accuracy of online resources. In some ways, using online resources can be a way to think critically and question the sometimes abused authority of medical experts - self-empowerment through knowledge. On the other hand, you are empowering yourself with knowledge that is coming from various different sources, some of which may not be reliable.
I'm not sure, however, that just because online sites are written by multiple authors that this necessarily makes them less accurate than an objective source. In my opinion, no sources are ever really purely objective. You can argue that history textbooks, which are supposed to be objective and present the "facts", are written from the perspective and bias of the majority in power (one of the reasons why I love the book Lies My Teacher Told Me: Everything Your American History Textbook Got Wrong by James Loewen). While facts are facts, the interpretation of facts can be infinite and quite biased. Even within the medical community, science articles are published every day that spur arguments defending two ore more sides about the interpretation of what the findings mean. I've worked for several years in education research and have seen firsthand how objective research findings can be interpreted in many different ways; and, in fact, how the bias of the researcher can actually impact the resulting "facts" of the research findings. Interestingly enough, research conducted that compared the accuracy of Wikipedia to the Encyclopedia Brittanica showed very little difference between the two, despite Wikipedia being written by multiple, anonymous authors: http://news.bbc.co.uk/1/hi/technology/4530930.stm
I would argue that the value of online medical resources is the fact that you are actually empowering yourself to seek knowledge. Using critical thinking skills, one can gather information from multiple sources and sift through the various opinions and perspectives. Some of these sources may be shoddy, others may be great - but it's your responsibility to dig through them and decide. Ultimately I think it's the process of digging that can be so helpful for people. Additionally, while your doctor may not take your self-diagnosis or opinions as seriously as you would like, you can feel empowered to take an educated stand for yourself and your view. Being informed gives you confidence and power to stand up for yourself. While you may ultimately decide your doctor's opinion is the best choice for you - at least it's that - a choice.
I found this one of the most interesting articles that I have read thus far for this course. I appreciated the fact that Shakespeare included so many different points of view and arguments throughout, although I must say, taking into consideration the complexity of the issue, the amount of opinions were almost overwhelming! This article takes a close and intimate look at two issues that I am extremely passionate about: abortion and disability.
I consider myself 100% against abortion in all cases, but I really enjoy hearing opposing opinions. Obviously, I disagreed with a lot of what Shakespeare had to say, but while this article did not change my opinion, I thought it had some wonderful points. Firstly, the article brings to light the fact that pre-natal screenings open a whole new barrel of problems for pregnant couples. There is a huge difference between finding out nine months later that your child has some sort of disability or impairment, and between being told right at the beginning, at the height of excitement, that your child will be disabled—so do you want the child or not? The author brings up a point of view that compares eliminating disabilities through terminating pregnancies to eliminating ethnic diversity “on the basis that racism can cause problems for black people” (4). Doesn’t it seem hypocritical to say that I, as a potential parent, have a right to decide that life will be too difficult if I give birth to a child with Down Syndrome, but I do not have a right to decide that life will be too hard if my child is born Hispanic, or female? Maybe I live in an area where racism runs rampant, and I realize that my child will probably risk being injured or killed many times throughout his life. Or perhaps I live in a country that does not value females as rightful members of society, and my child’s life will be in danger. Where does it stop? It is my opinion that all life is sacred, and every child (no matter what potential they have or don’t have) has the right to live. Just because there is technology available to give us more choice doesn’t mean we have to act on that choice, and it doesn’t even mean the choices or opportunities it gives us are even right to take.
Shakespeare says that “a common time limit should be adopted for all pregnancies…there are various reasons why a termination might be appropriate:…family circumstances, age, economic situation” (5), etc. What an incredible power doctors and scientists are giving human beings. Pre-natal testing is giving normal people, who (and I include myself in this) have the habit of being very selfish and materialistic, the power to give and take away life. I completely understand that having a child takes a toll on those who suffer with low incomes and different circumstances. Conversely, is it right for someone to decide, because they want to get farther in their career, or because their family lives too far away to help, or because they are too young and inexperienced, that a child that is physically disabled will affect his or her life negatively, or will not have a good life itself?
As I read this article, I found myself wondering if Shakespeare had ever seen A Christmas Carol. Tiny Tim’s grateful attitude toward life, even as a “cripple,” is an inspiration to the rest of the characters. Tiny Tim once told his father that he was thankful for being a cripple, so that those around him might see that life can still be worthwhile even though he was disabled. Similarly, such humility and acceptance brings to mind another inspirational child. I had the privilege of working for the Muscular Dystrophy Association for a short time. A recent representative for the Greater D.C. area was a young boy who had MD. He has since past away, but was in a wheelchair, with very little motor skills, and had great difficulty even speaking, let alone performing every day functions that I take for granted. His mother was told, when pregnant with him, that she should terminate the fetus because he would not have a good or long life. She declined, and her son became the youth representative for an amazing organization. This boy was quoted as saying, “I thank God that I am disabled, because I can show people that you can have a disability and still help people and love life.” What an amazing inspiration to anyone, with or without impairments, as well as to couples who have the hardship of deciding whether or not to terminate a pregnancy.
Although I respect Shakespeare’s opinion that parents should make an educated and dependent choice, and that a woman should still have the right to choose, I have to courteously disagree. I have no idea what the right opinion is; mine might be completely wrong. I do, however, absolutely agree that “impairment is a part of the human condition…inevitably we shall be born and die…inevitably we shall become ill and some of us will be disabled…[but] society should value disabled people, alongside all human life” (9).
great questions Lauren! what about appreciating the disabilities we have?
a point i thought i'd share — in the "regular semester" i teach a class called "The Arts and Special Education" and we bring in a number of speakers who talk about their work as artists, and how their "exceptionalities" impact their work and lives. i find, in this small sample, that those with acquired conditions seem to more negatively effected by their conditions, rather than those born with them. for example, Ed Walker (http://www.thejoyboys.com/) seems much more comfortable with himself, whereas Brenda Gilmore (http://www.gazette.net/stories/101305/uppenew224031_31892.shtml) talks about the fact that she'd rather be able to walk again, above all other things. now, this is a small sample (maybe not as many contributors as we might get if we set up a wiki to discuss this topic), but i thought i'd share.
Dr. Sarah brings up an interesting point—there's probably a huge difference in attitudes toward living with disabilities between those who were born with such disabilities and those who acquired disabilities after an injury or sickness. A man such as Ed Walker, who's parents chose to accept and "keep" him, might have an entirely different opinion about eugenics than a woman like Brenda Gilmore, who was born "normal" but then lost the use of her legs later in life and who's parents never had to chose.
Something else, a little off the point—speaking of disabled artists, I receive EasterSeal and Mouth and Foot Painting calendars, full of drawings and paintings by artists who have some sort of physical or mental disability. Loving art, I am always awed by how people with no hands, or paralyzed arms, or mental delays, are able to adapt and not only survive but thrive, producing art rival to Rembrandt or Monet!
My gosh reading Lauren's response to the article and Dr. Sarah's questions really go me thinking about how precious life is. Also reading two of the books for this class The Child Who Never Grew and Train Go Sorry helped develop a new prepective that I have or relize that I had. I never really thought about it but I have been around special needs individuals all my life. When I was younger, before it was closed, my father use to be a supervisor for an institution in the Washington area. I always participated in the Special Olympics as a helper and around the holidays, I remember, we would have some the residents to our house for dinner. My father would mention how some of the children were from extremely wealthy families who never came to visit. One family who owns an upscale retail chain supplied their relative and the rest of the residents of the institution with coats for the winter with a nice letter informing my father well really the institution to please refrain form ever contacting them. I remember this incident because I remember my father's face when he was telling my mom. How disappointed and sad he looked, when talking about families just leaving their family members behind. Anyway, once my dad left we really did not have people from the institution over because it was closed and most were placed in group homes. That was around 1978-79 and still today occassionally my dad will run into some of the residents at places like Wal Mart, Gas stations, or Giant and they light up. They are always like "Mr. Spann, Mr. Spann", they are so happy to see him and talk about their jobs with pride. How they come to work on time, how they have been working for 25 years, how this one and that one is doing,etc. It is humbling to see their expressions because it speaks truth with an innocence. Something that we don't possess. Pearl S. Buck speaks about it in her book. The more and more I think about it, who does have the right to say that person should not be in existance. We all have a purpose.
After reading the article and many responses, I thought back to an article I had read in The New York Times. It states, "About 90 percent of pregnant women who are given a Down Syndrome diagnosis have choosen to have an abortion".
Here is the article: http://www.nytimes.com/2007/05/09/us/09down.html?ex=1336363200&en=ccf8eef18ff478e4&ei=5088&partner=r
I was shocked to learn that the percentage was so high and to learn the true significance of prenatal testing. Even though I feel shocked at the high percentage I do not feel that I am in a place to judge women or couples who make the choice of abortion. I do not know the specifics of each case. Due to this high percentage, there is a probability that the number of individuals with genetic disabilities will decrease over the next few generations. Because of the decrease, I wonder what changes are in our future in terms of educational funding and research.
While I agree that the number is high of women decide to abort if their unborn fetus is diagnosed with Down Syndrome. I think that we have to recognize how often abortion is actually performed in society. The Center for Bio-ethical Reform states that in 1996 there were 1.37 million abortions performed in the United States. Then, compare that to the number of actual births in U.S., which is a little more than 4 million. That’s essentially, 1 out of every five children conceived will be aborted. I am not debating whether it is appropriate or not. I just think that it’s important to recognize that the high number of fetuses that are aborted due to abnormalities is not nearly as astronomical or shocking when you consider how common the practice has become, and the fact that women are aborting fetuses for (arguably) much less valid reasons.
Footnotes:
http://www.abortionno.org/Resources/fastfacts.html
After reading the article on “Eugenics, Genetics and Disability Equality” I came away with some very, very mixed, but strong feelings. Here are a few of my thoughts from what I have read and thought about:
1. A physician should NEVER require a woman to commit to termination of pregnancy before the test is given.
2. A woman should be given as much choice as possible about the situation, in every way. This is an extremely personal issue that the government ought to have no role in. It is not only about personal and moral values but practical concerns, as Tom Shakespeare points out many woman may be too unstable financially to be able to raise a disabled child, or may have other complicating factors. That’s not to say adoption should not be an option there.
3. Those that actually have disabilities certainly ought to be given more of a voice in the debate over eugenics. Ultimately it is only them who will be able to enlighten us as whether they think it would be wise to knowingly bring someone into that sort of life. Were they able to find meaning and happiness in life? What was necessary from their parents in order to make it work? What sort of parents do they think would have trouble raising a child with their disability? Even then, do they think it is worth considering terminating?
4. I don’t think we can stop scientists from being scientists. They are going to do experiments and continue to push the limits. But we can set personal and social boundaries to what we do with the science. That shouldn’t let scientists off the hook completely, I do think they have an obligation to consider the implications of their work. What we can do however, is put their knowledge to better use. The more that couples can find out ahead of time if one of the partners is a carrier or if there is a good chance their child might be born disabled, a better choice could be made at that time rather than after the women is pregnant. The couple could consider adoption or if they know one partner is a carrier for sure they could consider either having a sperm donor or invetro. Either way, it would make more sense to put more scientific effort into being able to figure this out ahead of time.
Even this STILL has societal consequences however and I do not think that we should strive to create a society free of all disabilities. All of us have impairments, although certainly most of them will not lead to a short life span or life without happiness. I think that many good hearted people will still choose to have their child even if they know there is a chance they will be disabled. It should be obvious from the books that we have read this summer that students with disabilities can still be amazing people and contribute marvelously to the world and the people around them.
The first thing that is clear from Shakespeare's article is that this issue does not have two clear sides. In fact, the article contained a jumbled mess of different points of view, each with a different exception to the rule or definition of the problem. However, one of the most important points presented by Shakespeare was the fact that in judging the quality of life of people with impairments, people who have lived with these impairments are rarely consulted. That fact shocked me at first, although in retrospect, I should hardly have been surprised. But it is disturbing because how can anyone else make assumptions about the possible quality of life of an unborn child. As Shakespeare pointed out, counseling in these situations is almost always produces a negative image of life for that child, but usually this information comes from scientists describing the physical aspects of the impairment or family members of the impaired. We talk about offering women a choice to make for their own bodies and children, but are we really offering them a choice when some people think that women should have to agree to termination in case of impairment, before prenatal testing? Or when the counseling is so biased that they are being judged if they don't agree with their doctors? That doesn't sound like a choice to me.
Ethics versus moral judgment can cause serious issues when it comes to deciding what is a disability and what is an impairment. Ethics provides rules or guidelines to help sway your decision where morals can simply say what is right and what is wrong. Morals deal more with emotions than what is logical to most people. A person with an impairment is simply an infraction or minor thing that makes them different but doesn't necessarily porhibit his/her ability to learn. A mental disability might prohibit the way someone learns, which would make them different. A hearing or visual impairment is something that can be worked around and the person with the impairment can still learn the same amount as someone "normal", but maybe in a different way.
Because I have never had to make the decision to have an abortion with someone who might be have a serious disability, I cannot say which is right or wrong. It could depend on the circumstances of the person who's pregnant. She may not financially or emotionally be able to take care of someone who may need the special treatment. All people may want healthy babies, but that doesn't mean that that's what they are going to get. People may side that it is not fair to the baby to terminate it and some may side that it's not fair to have an unhealty baby if they can help it. Since eugenics refers to the since of "improving the population by control of inhereted qualities", it means that these people who are for eugenics want to make everyone equal so that there won't be any awkwardness between the normal and disabled and they want to rule out the disabled. So instead of trying to find cures for the diseases of the disabled, they want to get rid of them completely, which i don't necessarily agree with because it basically states that they are giving up on the disabled that are already born. Being someone who is against abortion, it might be nice to know whether your baby is healthy, but regardless of the outcome, its not fair to terminate the pregnancy. People with disabilities may make the "normal" people of society feel awkward but that's just being immature about it. We should accept everyone equally, sure it might be more work for some, and maybe someday to one of us, but each person is still a human being. I respect all sides… I just don't have to agree with them. The ones who accept people with disabilities, are the ones who love and them, care for them and teach them.
Boy do I have a lot to say about this article. When I got done reading it, I wasn't sure how I felt, but after I gave myself some time to think about it I was really upset. I think there is a lot to address here. When I first started to read this article I high lighted a little section that I agreed with, "I define disability equality as the political principle that people should be treated equally, should be included rather than excluded from society, and should have the right to be heard, regardless of physical or intellectual endowment." I think this statement pretty much sums up how I feel about this entire article. I feel like culture, dominant ideology is so caught up in being perfect, the best, and tied up with leaving the weak behind. I think it is an awful way of looking at the world. As I state now, and will be stating through our my response is that, we as humans do not have the right to play god, no one is perfect and if everyone was perfect that there would be no indviduality, people would not learn from their experiences. I think the thought of getting rid of the "learning disabled" or people who might have more severe complications to their health or cognitive capacity, is wrong. However, I do believe it is the right of the woman to decide whether or not she wants to keep her child regardless of any health complications. In addition, when I said earlier that we do not have the right to "play god", what I meant is that we have no right to eliminate certain people from society. The author, Tom Shakespeare, uses the term "Nazi eugenics", which I think pretty much sums of this whole article. Why would we want to get rid of children unborn who might have health problems or learning differences. Do they not have a right to live as well? I know many people feel, well then there would be no pain or sadness, bu without those feelings we have no compassion, and in turn I have gotten alot of responses, "well think about the people who suffer, is it fair to them?". I was born with a learning disability, and yes it was hard growing up with the constant one sided view of my disability, but because it was so hard for me it made me into the person I am today. I know that not everyone can say that, but that is why I am this road to helping students with learning disabilities. I want to empower them and tell them that they have every right and ability to earn a fair education, and that they can achieve any goal that they put their mind to. I think what really got to me aout this article was that, what happened if this article had come out before I was born, and what happened if they went through with it. Would I not be here today? I think my disability made me the person I am today, and even if I had to option to do my life all over again, by going through school without the hardships of sitting in a classroom and grasping the knowledge, I wouldn't change my life. Whether or not a woman wants to find out if there might be any complications with her baby then that is up to her, and then the decision to not have the baby is again up to her. However, I DO NOT think it should be a way of life, I do not think that it should become a regulation to have this test, and then act on the results. Shakespeare says "its an easy test, everybody gets it done nowadays, it's simple. But I don't think there is a choice, I think that we're pressured into taking as many of these tests are available." I think he's completely correct in this statement, because having this test isn't like finding out whether you are having a boy or girl, it is a test that might change a woman's vew on having children or whether or not she will keep her unborn child. The thought truthfully makes my stomach turn knots. Another statement in this article I found important was when Shakespeare says, "a must have the right to terminate a pregnancy whatever her reasons, but she must also feel empowered not to terminate it, confident that the society will do whate it can to enable her and her child to live fulfilling lives. To the extent that prenatal interventions implement social reproductive choices." I its a lot to swallow, but I completely agree, and I think more woman need to become more aware of this notion. So in conclusion I DO NOT support the pre-natal screening, nor do I personally believe in eliminating of unborn babies that might develop cognitive or health problems as they get older. I think every human has the right to live, and I think it is up to the mother and her free will to decide what she wants to do in regards to her body and unborn child. To think that there are people out there that might support this article and the idea of getting rid of the weak and to have this population of people with no problems is a little rediculus. I don't know, I think this article hit a little close to home and it made me upset to think that people might actually be considering this notion for the near future.
I agree with a lot that Danny1820 had to say. But I believe that prenatal screening is a good idea. Not because it is a tool to eliminate certain "undesirable" traits but because I think it is a good tool for education. If parents know further ahead of time that their child may have different needs than others, then they have time to learn more about it and prepare themselves. If anything, I think that this could help them to educate friends and family members about the differences that they might face, and also could help foster an environment where people are more comfortable with differences and able to understand them. However, there is no way to know how prenatal screening is used, and doctors that perform the tests have a responsibility to refrain from placing pressure on their patients and should only provide information, not opinions.
The concept of "learned disabilities" was an interesting notion to me. I recently read an article about "Codas"(sp), individuals who can hear and have the capability to speak but choose not to and function in sing language and in the norms of the Deaf community. The article spoke about a case that involved a hearing child born to two Deaf parents. The child could hear and had the ability to speak but responded only to those cues that her Deaf parents had taught her. For example, their house was equipped with special telephones, door bells, and fire alarm systems that worked on a system of lights. When someone called, rang the bell, or when the alarm systems went on, a corresponding set of lights would indicate this to the Deaf parents. At one point, the light system failed. When someone called, rang the bell, or the fire alarms went on, the light system would default back to the traditional sound and bell alert system. While the Deaf parents could not hear this, their child, a Coda, could and was very much aware that there were noises at different places in their household. The Coda did not however, respond to the ringing bell, phone, or blaring alarms. The Coda child had not been socialized to respond to those indicators. The child instead only responded to a boiling tea pot and it's spouting steam. The Coda child could not hear the steam whistle but was very much trained to respond to steam. This then prompted the child to check the alarm, phone, and bell light system. Socialization has a lot to do with the way we perceive that people are "supposed" to function. Sometimes these are based on narrow views of how society works and often people are held responsible to perform up to standards that might have little relevance to their condition.