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.
If this article had been written by a pro-lifer, I think I would have been left in a really bad mood. I strongly agree with many other authors points, that prenatal testing and “Nazi style” eugenics are not at all the same, that free choice promotes eugenic outcomes, and that the parents of the child, in particular the mother who is carrying the child, should be entitled to the right to decide if they would be able to take on such as responsibility as raising a disabled child. Likewise, the disabled should be engaged in these decisions. More often than not, laws are made by people who have no connections to the community they are advocating laws for.
Often times those who seek to restrict abortion, are the very same who choose to cut public funding for institutions and programs that support people in need. My personal belief is that unless you have adopted disabled children or donate big bucks to institutions that care for the disabled, you need to cease and desist with your argument. To suggest that allowing a mother to choose if her child was going to be born disabled or be born at all, does not mean that in our society, that we will begin selecting for sex or any other frivolous matter in order to have the perfect baby. Likewise the argument is not for impaired persons for example the deaf or blind because no physical pain and suffering are inflicted on these affected. Being female or black as some have suggested are not even impairments, though they sometimes may have certain obstacles associated with them. Those who do not agree with this argument need to realize is that although life is a beautiful thing, we may not really be creating a life for someone just because they are born.
Yah..this was an interesting article to think about. I also agree with Liz on letting mothers (and hopefully fathers) decide on the fate of their child. I think it would be a very difficult and personal decision to make whether to terminate a birth because of a disability, but that is not for me to decide for someone else. Its also hard to know where the line is with terminating a pregnancy - its such a grey area…like you wouldn't want to have a child that suffers through his or her whole life, but you wouldn't want to deprive a child from living just because he or she has a disability. Plus the kicker is that you don't know 100% what that situation will be like until you go through with the birth and raising the child - it could be a blessing in disguise. I think our society in general views disabilities or impairments as bad things and is quick to figure out ways to fix them. However, some disabilities or impairments aren't a bad thing! Like in Leah Cohen's book, Train Go Sorry: Inside a Deaf World , the author speaks about how many deaf persons do not view their impairment as a disability - but they celebrate how they are in a different culture, while many of those in the hearing world don't understand and would be quick to "fix" the problem with cochlear implants. I also think that just because we can alter genetics a little, we don't have to get all freaked out, because like Liz mentioned it doesn't mean that we are going to chose the sex of our baby or abort a child that doesn't have the "right" eye color. It just enables us with more choices and eliminates having children who may be suffering or die at a very early age.
While I agree with Liz and Hillary that we are a long way from people aborting their babies because they don't have a blue eye gene or other such things, I do think that this article makes a salient point when it touches upon parents who, after deciding to have their child despite the fact that prenatal tests were positive for conditions such as spina bifida and cystic fibrosis, received negative reactions from health care practitioners.
Could it be possible that, as genetic testing becomes more reliable and widespread, our society's tolerance for disabled individuals will diminish? In classrooms, will we start looking at children with "avoidable" disabilities as taking away from the resources that could be spent on the children that have disabilities that could not have been detected in utero? Could classroom and healthcare funding diminish for kids with "detectable" disabilities as a result?
It's a little out there, and extremely scary, but something I think we at least need to consider, even if only to give voice to a refutation.
great questions Jessica! what do others think? is there some societial benefit to disability? that is, have members of the society with "disabilties"?
A society benefit to disability? Great question…I think that Pearl Buck, author of The Child Who Never Grew would definitely say that disabilities contribute to society in a positive way. For instance, because of her daughters situation, she worked diligently to help inform parents of their options, which were not nearly enough at the time, and sparked an awareness into the lives of people with disabilities – eventually, providing funds for The Training School at Vineland - for their facilities & research, which resulted in a number of tests used today during the special ed referral process. Further, from a strictly business and economic standpoint, some big corporations have benefited greatly from hiring disabled persons or persons with developmental delays – they hold their jobs for a longer period of time, saving some businesses millions of dollars on recruitment, new staff training, and so on.
The arguments provided in this article were extremely eye opening, but didn’t leave me feeling like I felt incredibly strongly one way or another. For example, the belief that disabled lives are not worth living. What do you all think? I keep thinking about Carol, Pearl Buck’s daughter, and her situation. I think Carol, to an extent, was aware of some aspects of her life, but what about those persons born with such severe developmental delays where they truly do not know what is going on, don’t seem to have emotions, and so on. Are their lives worth living? I cannot answer that – like the author of this article kept stating, I would have to ask the parent of a severely developmentally disabled child. What is their belief?
The article presents the medical science definitions of the terms impairment and disability. Impairment is biological whereas a disability is socially created. The disabled movement argues that “it is the social barriers which create disability and that the difficulties of living as a disabled person are due to discrimination and prejudice rather than impairment”. To me, this says, get rid of the discrimination and prejudices, and then we have not so much to worry about. If people can deal with their impairments, perhaps that’s half the battle? Again, we need to hear from the people who know firsthand.
In terms of the aspects of the genetics argument, Geneticists believe that they can offer more to prospective parents of disabled children through and because of gene therapy; which Shakespeare reveals does not provide prospective parents with the desirable information regarding social issues versus medical facts. What stuck with me most though was the following statement: “As genetics develops, the potential use of “eugenic misuse of genetic testing will clearly increase”. Further, and perhaps even more alarming “Research has shown that some genetics professionals hold clearly eugenicist views”.
The sides I see people being torn between here would be the following: Should a woman give birth to a child knowing that the child will have a more difficult life than most others? Knowing that it will be challenging, more time consuming, expensive, stressful, stigmatizing; constantly worrying about their well being, their education, and so on. Or, should a woman decide that this life is not worth living; perpetuating the belief that those with impairments don’t count in our society. I would have to or like to hear directly from women and parents that have raised children with major impairments.
Disabilities are impacting our society and our classrooms. Children with disabilities continually challenge teachers as to how they can best serve these children to learn what’s best, appropriate, and most meaningful in THEIR lives. No one child learns the same and incorporating and including children with impairments into our classrooms is differentiation at its best.
I can't get Brave New World and Gattaca out of my head when I think about these last few posts. I think both of these stories make an argument for the necessity of variation in society, and this isn't a new argument. In terms of a societal benefit to having individuals with "disabilities," I'd just quickly refer to that. All individuals in society have certain strengths and weaknesses, and one measure of an individual's "maturity" is the extent to which he or she is aware of these strengths and weaknesses. Often, it's easier to notice one's own qualities when they're highlighted by differences in others around them. So, in a society without "disabled" individuals, the other individuals in the rest of society may suffer from the loss of perspective on their own lives that this lack of difference causes. (This is not to mention the strengths the individuals with disabilities would bring to the table as well).
I so agree with Jimmy on how this whole topic reminds me of the GATTACA movie (I have never seen Brave New World). But Jimmy did bring up a good point about variation. If we are more in control of what kind of babies will be born, then our variation is not just based on nature and I am not so sure that is a good thing. While I am all for people making their own decisions on having babies with disabilities or not - I would never want to make that decsision for someone else…it does bring up the point of a natural birth vs a gene selected one. I know I am kind of getting over into the sci-fi arena, but it is something to consider……becasue in the movie GATTACA, the parents were able to pick their babies traits/genes/characteristics (if they had the means) and it really did produce a almost machine-like society, where there were no surprises really. where everyone's life was mapped out for them…there is one scene where the main character (Jerome) is listening to a wonderful pianist and then at the end of his playing Jerome finds out that the pianist has 12 fingers…..his parents picked this out so that he could be a pianist. So while its a little far-fetched, it does bring up some issues on whether or not it would be a benefit to society to be able to have control over genes and what traits are passed along.
I definitely do think there are benefits to having disabilities within a community - the diversity of others adds richness and teaches lessons of tolerance within our society. As a Biology teacher, I took my students on a field trip to see the NIH and Liz Lerhman Dance Exchange's performance of "Genes In Motion," where one of the dancers was a woman who had a genetic mutation that warped her body - she had overly long arms and legs, a barrel chest, and a twisted figure - I don't remember the name of the genetic mutation. She spoke to the students afterwards, though, and said that she did not feel like a "mutation." Instead, she listed her qualities as an amazing poet, a dancer, and I might add, an admirably eloquent and clear speaker. Would she have been all of these things if she did not have her disability, or would she have just been… normal?
Pearl Buck's book was an interesting piece of literature for me, because I felt like she was having an internal conflict of loving her child and wanting her child to not live anymore, reminiscent of the topic Liz pulled out from the article. I inferred from Buck that while she loved her daughter tremendously, this was a novel that explained her pain and 100% that her child had been born differently. In some parts of the book, I really felt she was being harsh - like when she was saying that if Chinese soldiers attacked them, she would want them to kill her daughter first because she could not care for herself under them - but then again, I have never had a disabled child and I have never been faced with the eugenic/ethical decision of whether or not I would want to continue to carry one to full term if I knew. At the end of the novel, she speaks about our need to research how to prevent disabilities in the future - this says to me that Buck does not have a positive impression on what disabilities add to our society; it makes me sad, but I wonder if she is just being rational? This is my own internal conflict that I would like to discuss - to what severity is a disability really not a benefit to society? Even the mental retarded, like Buck concentrates on as the disability to prevent, she also states can still maintain a job if they have the mental capacity of a six-year old.
When my eldest cousin first got pregnant, the doctor told her half-way through the pregnancy that the child would be severely disabled (due to a severe illness she had had at the beginning of the pregnancy), to the point of institutionalization. She decided, with great pain, to abort the pregnancy. Since then she has had two healthy children. I agree with her decision - she saved her family and the child a great deal of agony, as described in Buck's portrayal. But, it still feels wrong, as if we are choosing not to embrace the diversity we say we appreciate. I think sometimes that this issue is a double-edge sword, and only intuition and personal belief can be our guiding forces.
I have a few comments on the last few posts.
First I am not sure that Pearl Buck would argue that disabilities help society in a positive ways. Often in her book, I felt like and she said that life would have been better for her if her child was not born. As a result of her having a disabled child, Pearl set up and donated money to research for those that are disabled. And as she said, life and research was improving for those with disabilities….. but does that mean that they are a benefit to society?
The challenging part to these questions is that there are so many layers that it is impossible to have one decisive answer. Every question, like mine above, depends on many factors or require further questions to gain an answer. For example, for my question above, follow up questions might be…
what sort of disability? to what degree are their symptoms? what is their long term prognosis? are they in pain?, and on and on…. clearly some will be a benefit and others will be a greater hindrance to society…. but where is the line between the two?
These are really critical philosophical issues, that really get to the heart of what our society is like and what the point is of us being here. Shakespeare's claim that impairment is part of the human condition is true and irrefutable, but what we should do about impairment is not so clear. Death is also a part of the human condition, but no one would argue would should try to save lives, just as mistakes are part of life and we try to avoid making them, why should we try to improve "impairments." We fight a war against drugs both by going after those that produce the drugs and trying to cut off the supply, at the same time we focus on treatment or other disincentives for those already afflicted.
What I don't understand is how the author frames the argument to try and create such a unique space for disability rights. The suggestion that disability equality = people should be treated equally and not excluded from society is off on a few levels.
1) no one wants to be treated equally, people want to be treated fairly, the difference being that if I treat everyone equally I'm going to have a tough time teaching different ages or levels of students.
2) Also, even accepting the premise of being treated equally, the opposite is unequal treatment, not exclusion from society.
Thus, getting back to the question of the benenfit to society of disability, I think it DOES fall in the same category of race (unlike the author suggesting that there is nothing inherently difficult about being black but there is about disabilities and the difference between social treatment), in that all of our conditions are subject to social influence. Addressing how we treat people with disabilities challenges us in the same way that fighting racism or any other difference: it teaches us more about ourselves, about how to work with others and provides a more enriching and diverse society. There's no easy "solution" or middle ground compromise for a lot of issues like this one, but continuing to fight injustice is a worthwhile cause for anyone.
I really like the way the author calls for a nuanced view of impairments and disabilities, recognizing that there is a spectrum. Some conditions are only “disabilities” only because of social barriers, some conditions are clearly impairments because of the pain and suffering caused by them, and many conditions fall somewhere in between.
Suppose 100 years into the future, we are able to screen a 4-week old fetus for any “impairments” the child will suffer from and any qualities that have the potential to make child’s life difficult because of the society they live in (including things like homosexuality). Suppose lawmakers decided that if parents discovered their fetus/child would suffer from one or more impairments from a designated list of those deemed painful enough, they could choose to abort the child on those grounds. Unless the law says, “otherwise, no abortions” right after its list of designated impairments, there would be no point in creating that list at all. Shakespeare recognizes that “If we accept that women may wish to not have babies because of the impact on their careers or financial situation, then we must also accept that women may not wish to have babies with impairment” Going a bit further, we would also have to accept their wish to abort fetuses because of qualities like homosexuality… because we would have no control over it. If in the hypothetical future the law still allows for abortions as it does today, people could get their screening done, see that a child is going to be homosexual, and then abort the fetus claiming different grounds. This puts us in a race against the future to overcome prejudices before we have the power to genetically root them out.
I think the future, assuming it will bring advancements in genetic screening, will force us into more extreme views on abortion. Either people will be against it all together, against it with a handful of impairment exceptions, or we will have to let the floodgates open, letting in all the fears regarding eugenics. These fears might also sway us in the pro-life direction - perhaps it already has?
The part of the article that defined disabilities as sociologically created while it is impairments that are biologically produced spoke to me too. The more I thought about that idea, the more I realized how correct it really is. Disabilities are created by a society in which non-disabled people pass judgment about the limitations of biologically impaired individuals. It made me think that with more dialogue, acceptance and education around disabilities, the lives of the biologically impaired could be improved drastically.
I also wanted to speak a little bit to the idea of parental choice when it comes to whether or not to have a child who will be disabled. In many ways I think that the tests are good, because if parents decides to have a disabled child and there are special preparations that should be made in advance, including the parents learning more about the disability, then those can take place before the child is born. On the other hand, I do not agree with the way testing is currently done. First of all, I believe their should be stricter regulation about physicians informing expectant parents about the tests before they are done. The advantages and DISADVANTAGES of the testing should be discussed before anything is done. Also, when a test comes back informing parents and doctors that a child will be disabled, doctors should refer parents to organizations that support individuals with that disability so that parents can make decisions with a accurate picture of the disability in mind. Decisions should not be made by doctors and patients alone - those will be biased and unbalanced decisions.
Finally I want to share some writing by Emily Pearl Kingsly, the mother of a disabled child who wrote this in response to requests from others to describe her experience raising a child with a disability. I think it fits well here because it helped me to better understand what a parent who find out their child has a disability must feel and how they have to cope. Warning: It might make you cry a little, I did, but then again, as most of you know, I cry very easily.
Welcome to Holland
When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo "David", the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".
"Holland? you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
"But there has been a change in the flight plan. They've landed in Holland, and there you must stay."
The important thing is that they haven't taken you to a horrible, filthy place, full of famine and disease. It's just a different place. So you must buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a little while, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
I think you bring up a valid question, Jessica, when you asked if it was possible for society’s tolerance for disabled persons to diminish. This would be a nightmare if it ever happened. Just as Shakespeare says, “Society should value disabled people, alongside all human life.” (p.679) According to the article, we are no where near developing means to control the genetic make-up of unborn babies. We can use tests to show their make-up, but not decide the outcome. Because of this, there will always be a disabled community. I understand the weight of the decision that is put on the parents of the unborn child. Just like Hillary said, you have to choose whether you want to have a child that suffers from some sort of impairment or disability throughout the entirety of its life, or if you choose to deny your child a chance to live. That puts the parents in a position to define the value of life. Society needs to be better educated by individuals with impairments and disabilities, as well as parents of those individuals, in order for parents to make a more informed decision.
I think Shakespeare is definitely taking a step in the right direction when he suggests one measure for the future to include “public information and education about living with impairment, the achievements of disabled people, and the moral worth of all human beings.” As a society, we need to work toward achieving social equality for disabled persons. Educating society about disabilities and impairments will eliminate ignorance on the matter and open up discussions of how society can treat disabled persons with the same respect given to non-disabled persons. One of the best ways to educate people is to hear from disabled and impaired people themselves. To reiterate Shakespeare’s point, “Resources would be better spent on creating an inclusive and barrier-free society, and promoting the civil rights and independent living of disabled people.” (p.697)
Genetic testing has provided a large amount of controversy but what it has also done is given parents of future disabled children a warning - or a chance to begin researching what they can do to best help their child learn. I hope that there is enough information out there for parents to feel more confident upon knowing that they are bringing a child into the world whose life and learning will not be easy. But based on the articles, I do not think they are well informed. What can be done to change this?
To answer your question, I think that two things would have to change. First, parents would need to feel empowered to research and gain as much information as needed before making a decision. However, in order to feel truly confident about bringing a disabled child into the world, the parents would also need to know that there will be supportive systems in place for their child throughout the child's life. In other words, they need to see that their child can life a fulfilling life - that there are economic, educational, social and medical programs in place to ensure that the child will be well-supported into adulthood.
As someone who is currently expecting and will be going through these pre-natal genetic screening next week because of maternal age (yeah guys I’m old). This article is something that I have been going back and forth with for awhile. I would like to be forewarned if my child would have some sort of genetically detectable problem but I have no idea what I would actually do. I believe however that as a parent I have to right to know because ultimately it will be my family who deals with the issue.
I don’t believe that as people we will ever be able to rid ourselves from differences. Autism is not detectable through genetic testing but the rates of children born with different severities of this disease increases. Do believe that genetic testing does, however, test what we think we know about ourselves and that in itself makes it dangerous. There are some, myself included who thought that they would never do it until the are presented with the option and the need to know.
As a parent I believe I deserve the right to mentally prepared myself for a child that may have disabilities and to seek out options and resources for that child. Genetic Testing gives me time to do that and maybe to come to terms with what is in store for me. Genetic testing can also prepare a sense of relief that everythimg seems to be going well.
There's some actual legislation going through Congress that's relevant to all of this genetic screening discussion. This legislation protects individuals from losing their job or being denied health insurance because of a predictive genetic testing or family health history. The legislation has been around in different forms for about 10 years now. This year, the current version of the bill was passed in the House and is extremely close to getting through the Senate. It's called S.358, the Genetic Information Nondiscrimination Act, and you can read more about it here: http://www.geneticfairness.org.
Might some legislation protecting against screening for certain disabilities come up? What would that look like? Is this how we should moderate this ethical conundrum?
It must be very unnerving to be going through the different tests that are discussed in that article. I think that the author made an important point in the article when they worte "Clarke argues that the very idea of non-directive counseling is an illusion, a point proved by research". It would be very difficult as a doctor to not have a point of view on the matter, and then even more difficult to not direct your patient towards your desired outcome. The notion of testing for the sake of testing, because some sort of decision (passive or active) must be made from the results. The idea of giving patients enough information to make there own decision is powerful and enables women to make informed decisions. To me it does not seem as much like strong eugenics is all the information is available for the mother, agreements/disagreements?
ghughesstrange, I do agree that giving patients as much information as possible is clearly ideal. I think we could all agree that parents should have as much information as possible about all of the possible outcomes for their child. However, I think the point that Shakespeare emphasizes is that, no matter what, the doctor's personal biases will almost always come through - in what information they choose to present and in how they go about presenting it.
In addition, I think that - to bring education back into the picture - the education of the parents making the decision will play an extremely important role in the decision-making process. Parents who are well-educated can do research on their own that may allow them to make a more fully-formed decision about what is best for their own situation. Parents with poor literacy and research skills are pretty much left taking their own doctor's opinion as the answer.
I think that education also plays an important role in terms of educating individuals with disabilities to articulately advocate their own positions in the genetic testing debate. In his conclusion, Shakespeare listed "inclusive education for disabled people" as one of the steps needed to move forward. I think that inclusive education helps in a variety of ways. First, it potentially decreases social stigma surrounding people with disabilities, an important first step toward valuing individuals with disabilities. Secondly, it gives disabled people the skills they need to articulate their position on genetic testing, which can then be presented along with a doctor's during genetic testing counseling in the future.
Well put on the education of the parents effecting the outcome of the results. Low-educated parents are more likely to take the doctors results/motivations without making a researched decision. Well-educated parents will be less trustful of the doctors and like to make their own decision based on their own research.
I think the issue of giving parents complete information is a personal one, similar to knowing the sex of the baby. However, as anyone who has read Freakonomics can attest, the issue of abortion and the impact it has on society is not so personal. The book argues (quite convincingly in my opinion) that because of the Roe V. Wade decision, the number of kids who would have been born into families that did not support them for whatever reason stopped being born, and crime in the 1990's declined. I am not suggesting that abortion is a desired form of crime fighting, but I do believe that if a parent feels he/she is unable to care for a child that we as a society shouldn't force them to have the child. Seeing what happens to unloved and uncared for kids in DC and the life chances they have, I simply don't think it's fair. I agree with others who have suggested that we need to rid society of the stigma about disabilities and the lack of quality social services for those affected, but since that's not likely to happen any time in the near future, why force children into a world we know is unable to care for them? Is that any less cruel or inhumane than an abortion?
(account deleted) 01 Aug 2007 18:29
I also concur that often the literacy and education level of the parents plays a strong role in how much value is placed on the views, as perceived by the patient, of the doctor. However you must also consider the role of religion in the making of such decisions. In a world where the debate against abortion is strongly backed by religious groups of all denominations, we cannot discount the advice and pressures that organized religions place on expectant families. However I would like to get back to the article's discussion of whether or not medical interventions constitute an example of eugenics in our society, Shakespeare takes a very strong stand that it is not since expectant mothers have clear power of choice in whether or not to have a medical intervention. Yet what about the test themselves that necessitates parents to make a choice? In the article it states that while parents technically do have a choice as to whether their child is tested for disabilities prenatally, many of these tests are included as routine procedure during prenatal visits. I agree with Aaron above when he stated that knowing whether or not your child has the potential for disability should be similar to knowing the sex of your child. It should be a choice.
Last year my aunt and uncle had a baby girl. Throughout their pregnancy the child tested negative for all disabilities or genetic abnormalities, however when their daughter was born she tested positive initially for mental retardation. As she continued to be monitored, mental retardation due to a chromosome mutation was ruled out, and her development continued normally however the doctors have made it very clear to my aunt and uncle that they will not know if she has any of a spectrum of disabilities until she surpasses the age of three. My point in sharing this story is simply that the tests that we have created are not perfect and the possibility of false positives or negatives exist, just like in any other test. With this knowledge in mind parents absolutely deserve to have a choice as to whether or not their child is tested. The responsibility of raising a child is monumental and when that child has a disability, additional strain can be placed on the family. Parents deserve to have the choice to know and plan for that eventuality if they wish to. How does the rest of the class feel about doctors who run these tests without parental consent? Is this just a case of "oh well now we know" or is it something that should be illegal? I do not believe that it would be considered an instance of eugenics if doctors tested for disabilities during the normal course of testing. The choice to be given the test is more of a courtesy, like knowing the sex of your child. In no way does knowing that your child is disabled pressure you to medically intervene, it simply presents you with a choice and knowledge of what you need to do to be prepared for your child when he or she is born.
(account deleted), 01 Aug 2007 18:29
Congratulations, Angela! It is nice to have someone in the discussion who is deeply and personally involved in this topic. I like to think that if I was expecting I would have similar feelings. I would want to know so that I could be prepared if I needed to be. Thanks!
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.
Another interesting question to consider related to the topics of genetic screening and eugenics… More affluent people are already more informed about birth control, are having children later when they are better prepared to handle the responsibility financially, and are therefore able to afford better pre and post natal care for their children (including genetic screening… if you want to call that care). Even if a rich girl slips up and gets pregnant at 15, her parents (and their health insurance) can help pay for the best care available. NOW, affluent people can make informed decisions about whether or not they want to have their child based on how health and normal it’s going to be.
By contrast, poorer people, like many of the students we teach, are more uninformed about birth control and are having children at younger and younger ages when they are not prepared for the responsibility and cannot afford the same kind of care or the genetic screenings. In many cases, young girls do not know they are pregnant until the bulge gets big enough and will then go on trying to hide it, all while the child is receiving no care whatsoever. This population is not going to be making the decision to abort fetuses that are likely to suffer from disability x, y, or z because they’re not going to know about it. Talk about a reason why we might see an overrepresentation of children from lower socioeconomic groups in special education!
Is this fair?! Doesn’t this disparity in health care and in the ability to make the decision to have an abortion if you wanted to have frightening implications for a widening gap in society? For the rich to stay rich and struggle free, while the poor and burdened?
I think there are benefits to disabilities. For example, many people who are blind are gifted musicians; the thinking is that their sense of hearing is particularly keen because they have to rely on their ears so much to negotiate the world. Also, they have a keener sense of smell than the rest of us. There's been some research that links manic depressive illness with good writing. Would anyone who suffers from such an illness choose to have it just so they could become a celebrated writer? That's doubtful. I think there are benefits to society in other ways, too. For example, when a very wealthy family has a member afflicted by a disease, they're likely to become great fund raisers for the cause and to promote other activities related to it. Would the Kennedys have started Special Olympics if daughter Kathleen had not been mentally retarded?
A key problem, which some have mentioned, is that medical science is not perfect. There are still people surprised by the birth of twins. Or sonograms that supposedly showed a girl, but a boy was born, etc. I know of a woman who was told her baby would most likely be mentally retarded and she wasn't. I know a woman who had a normal pregnancy and everything was thought to be fine until the baby was DOA. No explanation. It just happened. So I get really agitated when I read articles like this that make it seem like science is perfect and that these are easy choices.
Right, I think that is a leading problem with science arguing for the abortion of a pregnancy… it is not perfect. This also becomes fodder for pro-life advocates who say that the science is often wrong and you could be ending the pregnancy of a perfectly healthy child. This is even more of a reason for parents to research the science behind the results so that they can weight all the possibilities and understand whether or not the possible prognosis is likely or unlikely.
http://special-needs.families.com/blog/if-only-we-had-known
This link will take you to a story that was in the news not too long ago about a California couple who is suing their doctor because their genetic screening was incorrect and they now have a daughter who has spina bifida. (This is from a web page geared for Families of Children with Special needs so there is extreme bias, just to be clear).
The article we were assigned reminded me of an assignment I actually had my students do in class this year. At the end of our genetics unit, they were to debate the biological, social, ethical and policy issues surrounding genetic screening and choice. We watched the movie GATTACA to set the tone of what a world would be like if all imperfect (or as the movie referred to it as "God births") babies were terminated and only genetically chosen, superior children entered the Earth. I bring this up because while it may be extreme (something the article spoke often of), it brings up many societal issues that are still present today.
Who is to say what is normal? What does it mean to be normal? If we acquire a genetic disease later in life should we be terminated upon onset? What would happen (culturally, socially) to a child born deaf when there aren't many born-deaf people for whom they can identify and relate? In the novel we read "Train Go Sorry" the author was clear that there are different cultural meanings to being deaf and being a part of the deaf community- how would these relationships and identities change if we were to screen out all deaf children before birth?
I would have liked it if the article addressed the number of children in foster care (or awaiting adoption) who were given up at birth (or after) because of their disabilities (or parents not being able to care for them due to their conditions). I wonder if those numbers would justify aborting and screening for disabilities, or combat the idea.
I referenced an interesting article which shows the opposite side of this kind of screening (Actually screening FOR a disability as a desirable trait) in one of my Wikipedia assignments. A deaf lesbian couple wanted a deaf sperm donor in order to increase their chances of having a deaf child. In light of this article, I recommend checking it out!
Designing Deaf Babies and the Question of Disability
http://jdsde.oxfordjournals.org/cgi/content/full/10/3/311