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.
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?
Shakespeare raises an important issue regarding the social "acceptability" of individuals who are born with a genetic mutation or variation. Our society labels these individuals as "disabled" however a large majority of them are completely healthy and have no associated medical problems. The culture in which we live encourages negative thoughts and feelings towards people who do not appear "normal" or can't function "normally". This social construct has led to the belief that individuals with a genetic mutation are not living a "happy" life and the medical professionals must work towards creating a way to identify these situations before birth so they can be avoided and our world will be a genetic utopia.
Note —> I will not use the term genetic defect in this response…I am replacing it with genetic variation/mutation.
There are definitely salient elements for the multiple sides of the genetics arguement. It is difficult to define the genetics arguement as having two sides, I believe there are various levels of agreement or disagreement with genetic screening and the termination of a fetus who has been diagnosed with a genetic defect or variation. In my opinon, the process of genetic screening, genetic counseling, and the process of terminating a fetus are three completely different issues and should not be discussed as one arguement. Individuals could agree with the genetic screening of all "at risk" pregnancies but could be "pro-life" and disagree with the termination of a fetus. Another side of the arguement would be disagreement with the processes of genetic screening and counseling. I have met individuals who have strong religous affiliations and do not agree with any medical influence on a fetus before it has been delivered. On the other side of that arguement lies the individuals who are in favor of genetic screening and believe that individuals should be provided with the choice to terminate their pregnancy if a genetic variation or mutation is found.
I am still struggling with where my opinion lies within this debate, but as a scientist I believe that it is the responsiblity of medical professionals to provide our society with the highest quality of life when possible. I am very conflicted with what "a high quality of life" is at this point because I know what society has made me believe what a "perfect" life is, but I don't think I agree with that idea anymore. At this point in my life I do not necessarily agree with the termination of pregnancies if a genetic mutation is found but if it becomes possible, I would agree with gene therapy or the "fixing" of a genetic mutation/variation. For example, if it was discovered that a fetus had Down's Syndrome and doctors could successful "fix" the genetic mutation I would agree with that process, but only with certain diseases. Wow, this is a really touchy issue and I feel like it is really difficult to define a set opinion. The reason I feel this is so difficult is because everyone in our society has a different opinion about what the term disability means, what conditions should be considered disabilities, and whether or not disabilities should be considered impairments. One of the most disturbing issues regarding genetic conditions which has caused me to be so conficted over the issue was discussed in Shakespeare's paper. Shakespeare talks about screening individuals for the genetic predispostion for homosexuality, however I do not agree that homosexuality should ever be considered a "condition" or "disability". When we are discussing issues that ultimately affect a life, it becomes extremely complicated to make medical norms, laws, or rules. Should our society continue to let individuals choose whether or not they terminate a pregnancy based on their idea of what a life with genetic variation/mutation would be like?
Emily, Thanks for starting up a discussion on a topic that can be quite difficult to approach. You brought up a lot of great points as well as did a nice job summarizing some of the central debates in the article.
I just finished reading Pearl Buck's "The Child that Never Grew," and as a result read this article through slightly different eyes than I might have a few weeks ago. For those who have not read it yet, the book tells the story of Pearl Buck's experience raising her mentally retarded child—central to the story is her eventual decision to institutionalize her daughter. After several years of working with her daughter, attempting to stretch her daughter's mental capabilities to their absolute limit, Buck had the time and financial means to thoroughly research institutions and eventually place her daughter in the one she felt was the absolute best (this one was not the most expensive). Although her daughter added valuable contributions to the life of Pearl Buck herself, her mother recognized that her daughter would never contribute anything to greater society. I felt this was a healthy and realistic outlook given her daughter's condition. This is why I initially felt many of Shakespeare's accusations that the public must learn to view those with disabilities to be valuable/productive members of society to be overly naive and idealistic.
As I read further, however, I realized that Shakespeare's arguments were more nuanced than I initially assumed. Ultimately, I think he presents a well balanced argument. He draws the line well between impairment and disability, as well as brings up the unique argument that people with disabilities should be central to the debates. He also does a good job explaining the difference between abortion rights and disability rights. One area, however, that I feel he could have focused on more are the realities parents with disabled children face. There are enormous financial and psychological burdens that go along with giving birth to a disabled child. I would have like to know more about the details of these, and how this may or may not affect Shakespeare's opinions.
I'm not sure a yes/no answer would be an appropriate response to the question you pose, Emily G, but I do think it’s important to address the implications of such a society.
First of all, Emily B touches on an important issue regarding the financial obstacles that certain members of our society have. While it’s certainly very expensive to raise a child with such a severe impairment as Pearle Buck’s daughter, a financial burden is also placed on those parents who go through with testing and “fixing” (in whatever form that may take) these genetic variations. Because of such costs, what we will see— at least in America where health care is still a private industry—is a Gattaca-esque society, where the distinction between the upper and lower classes is not only financial and social, but now also genetic. The upper class will be enabled now not only by their financial and social superiority, but by their health and mental agility. The poor will remain without adequate resources and social position, compounded now with genetic inferiority. The whole idea of equal opportunity in America would be under attack.
Secondly, I think the disability movement presents an important duality in the discussion of persons with disability, in that it is both a social construct and a biological disease equated with a poor quality of life. Whichever perception of disability is more in line with one’s thinking, there is value in the dual nature of the disability. In a sense, it offers us a variety of solutions for improving the quality of life for people with disabilities. If we approach the question of “repairing” the disability, thereby focusing our attention on the biological aspect of the disease, we run the risk of neglecting the social forces that impair a person. If we have the ability to genetically alter -say- a disease that renders people wheelchair-bound, would we still find the need for elevators and wheelchair ramps? In this very basic example, of course we’d make the accommodation, because there are other ways to lose the use of your legs. But would we be less likely to? Would it create moral questions, such as, If you’re too overweight to use the stairs, lose some weight? Or, If you broke your leg playing soccer, tough luck? I’m posing the question: would these types of solutions create a less accommodating society? Consider differentiated instruction. If we weren’t forced, by law, to make accommodations for students with special needs, would we? Would everybody?
I appreciate kholtschlag 's recognition of the role of economics within the medical and social debate, arguing that, "The upper class will be enabled now not only by their financial and social superiority, but by their health and mental agility. The poor will remain without adequate resources and social position, compounded now with genetic inferiority." I feel that Shakespeare avoids the obvious implications that socio-economic status must hold for the issues he raises. For example, I do not imagine my 15 year old Hispanic students who are parents being offered the types of screenings or choices discussed in the article.
However, I did find that Shakespeare's description of Hubbard's comparison of impairment with ethnicity resonated with my experiences and understanding of discrimination. Hubbard says that to eliminate ethnic diversity because of the problems it may cause for minorities is similar to eliminating individuals with impairments. Shakespeare objects by distinguishing between social and physical impairment, and calls Hubbard's fallacy: "She argues against lumping all disabled people together 'as though all disabilities were the same and always devastating and as though all people who have one were alike,' yet this is exactly what she has done herself."
At this point in the reading I was first able to really challenge my assumptions of disabled individuals, by comparing the perceptions of their "group" to other "groups" with whom I am more familiar though my teaching and personal experience - specifically minority populations. I am Asian American, and my grandparents were interned during WWII because of their ethnicity, a condition that while socially constructed certainly presented both physical and social impairments. I also teach a mostly Hispanic population, yet would never "lump" the social experiences of my students entirely together, as Hubbard describes. To make my point, while I recognized the complex perceptions of some groups, I had not previously paid significant attention to the complexity of groups not ethnically defined - namely, disabled individuals.
In application to my teaching, this text holds greater philosophical implications, rather than direct relevance, based on my student populations. The choices that Shakespeare describes are made by parents, not teachers, and yet teachers must be able to consider the distinctions between socially perceived disability and physical impairment in order to truely hold high expectations for every student. At first I didn't believe I was particularly affected, as I am not a special ed teacher, but my students have included individuals who are homosexual, have sickle cell disease and diabetes, and have been diagnosed with mild autism - all conditions described in the text.
I would imagine that most teachers in this course will argue passionately for the need to teach our students empowerment and tolerance - isn't this what culturally relevant pedagogy is about? Now we must also be able to expand our recognition of social biases to include the distinctions Shakespeare makes here.
I also agree with KHoltshlag about the SES component of this debate. But lack of access to the "benefits" of genetic screening is only one side of the problem. In the "Gattaca" version of this story, the disabled/poor would also be assured less help from society and government. With fewer and fewer wealthy/powerful people having a personal stake in the plight of the disabled, social services and research dollars would be less and less available to help those who are born with the genetic variations. Think of the progress and public awareness that powerful people like Christopher Reeves or Michael J. Fox or Jerry Lewis have brought to their communities. Now imagine a world where the only parents who cared for disabled children or the only people living with disabilities were those too poor to access the technology.
And this is not just some dystopic vision of the future. Seeds of it are happening now. I encourage you all to check out this New York Times article detailing the effect of advances in screening for Downs Syndrome. One of the many interesting points is that parents of Downs kids are concerned that the screening will dry up resources for their children. It's a very real concern and has to be a part of our discussion here, as complicated and multi-layered as it already is…
As I read (or skimmed) all the other responses to this article I found that your response was the one that I connected with the most.
Shakespeare's article brings up a lot of different points. Most of his points seemed redundant especially in his case against as you said, "the line between impairment and disability."
I was very interested in the area of Choice and Consent, where Shakespeare references, (Farrant, 1985, p.110). “There is evidence that the choice to have ante-natal tests, and the freedom to decide whether or not to proceed pregnancy, is not free and open as the medical establishment would suggest.”
Being the mother of a 3 year old and a 2 month old I remember when I went for prenatal care not really knowing exactly the full details of the genetics tests that I had to take. And I still can’t say that I do. I was never given the option of speaking to an actual geneticists and I never asked because I automatically assumed that the obstetrician is knowledgeable about genetic conditions that could possibly occur. Plus there is always the disclaimer, “More likely in women over 35.” I am only 29. So I felt as though these genetic disorders did not apply to me based on my age and my (as well as my husbands) family biological history. The obstetrician would also make it clear that this would only be a screening, but if there was some evidence that showed up in the screening then the option to take the tests was there if I wanted to take it. Doctors are required to inform their patients of the reasons for these screenings, but to me it feels like a scare tactic.
But as a new parent I know that I did not want to take any chances and possibly carry a child who was Down Syndrome or developed spinal bifida. Just as Shakespeare’s’ article said, “Women who gave birth to people with Downs Syndrome, having declined the opportunity to have prenatal screening, they were consequently more like to be blamed for their situation Marteau & Drake (1995).” My cousin, also a doctor, who just had her first child at 37 declined to have the actual test where a needle is inserted into the uterus and amniotic fluid is withdrawn to test for Down Syndrome. Her choice to not have this test was because she knew that one of the possible downsides to having this tests done is a miscarriage. She delivered a perfectly healthy child.
Another thing that I agreed with within the article was where it discussed that the decision for many women to terminate a pregnancy because of some impairment or disability was not due to eugenics, but the because women felt that children within this group have more complex needs with major implications for both cost and care.
Having children who are healthy is a lot to care for so I could not even imagine what parents of disabled children go through.
The decision to terminate a pregnancy based on impairments and disablities is a hard moral decision. Policy makers, scientists, and doctors should take in account the disables thoughts on the decisions that are made for them. Until I myslef is in this situation it is hard for me to say what is right or not.
Kai's very personal posting here is valuable to our discussion. In what ways do others feel comfortable sharing their own opinions about raising a child with an exceptionality? How might this attitude impact your relationship with the parents of children with exceptionalities you work with?
I think Pearl S. Buck's account of what it was like to raise a child with a mental disability helped me to really understand the pathos of and endurance required in such a situation. Even in the first page of the book, when she responds to the question of "bearing the sorrow of having such a child", saying, "endurance of inescapable sorrow is something which has to be learned alone…" It shocked me that she would speak so openly about the devastation of having such a child. I was shocked mostly because in my naively liberal mindset, I expected that all mothers love their children with equal strength. Her admission made me somewhat uncomfortable because it turned my ideas about unconditional love on its head.
But as I read through the the book, I realized that the sorrow over her daughter was for her daughter, not for Buck as a mother. She did not grieve for her own world made more difficult and costly, but for her child's inability to lead a normal life.
In this context, and now especially in light of recent genetic discoveries making it possible to reduce the chance of this happening, I have a deep respect for those raising children who are disabled. The frustration we feel for 84 minutes a day dealing with these students must be multiplied when our students go home.
I don't think I've ever been cursed out like I've been cursed out by the parents of my students with special needs. That type of treatment makes it hard - emotionally - to help their kids. But Buck helped me understand that this lashing out is only a manifestation of their frustration and their sadness at their child's inability to function normally in their own world. In a sense, in that anger we as educators and parents can find a common ground: the child's success in and out of school. It's important to establish that common ground, then, and work together from there.
I completely agree with your very last sentence, which is the exact point of my discussion. People are different…
Kholtschlag, you ask a very interesting question about our society becoming a less accomodating one if solutions such as "repairing" a disease or disability by altering an individuals genetic make-up become possible. I believe that if we begin to use such techniques, we definitely run the risk of creating a culture or world where pefection is the only thing that is excepted. I fear that a society bent on perfection may lead to the shunning or even worse…extermination of individuals with disabilities and impairments. Although, maybe our society is already beginning this extermination… through the termination of pregnancies where gentic variations and mutations have been found. In terms of providing students with differentiated instruction…I think that even if not forced by law, I would continue to differentiate my instruction. I don't know how any teacher would be successful in their profession without differentiating…in my experience when I neglect to differentiate a specific activity, my students demand it of me. They ask for alternative assignments or they show me that they are not even remotely engaged in the content I am discussing. When this happens, I quickly realize where I have lacked in preparation, and alter my plans…otherwise I would lose complete control and my classroom would become chaotic. My students' behavior relies on their level of engagement in the material or activity I have provided…I would think that is the case for the majority of teachers…except maybe those who have phenominal classroom management skills.
It seems we are in danger of becoming a society where making oneself into a "perfect person" is the only acceptable option. We may have a tier of society where everyone is rich, beautiful, and smart, and if one is born (or about to be born) into that society, one must measure up or get "fixed", through genetic manipulation, plastic surgery, etc. Parents no doubt make abortion decisions based on shocking criteria, but it is not clear to me who could be trusted to make better decisions. I feel it is important for the genetics and obstetrics communities to do their part to ensure their members follow best practices that meet the needs of perspective parents in a compassionate and ethical manner. When we find that counseling from various practitioners yields different outcomes (as T. Shakespeare describes on p. 668), medical associations need to be intervene to improve consistency.
One might also envision a society for the rest of us, who either do not fit in or choose not to bother. We might strive for more modest goals like quality relationships, health care, affordable housing, and meaningful work. Perhaps we will see a social movement where non-surface traits (for example, service) become more highly valued. I used to think my teaching was mostly about empowerment through math content, and that I generally needed to keep my value opinions to myself. But after teaching for two years, I feel it is important that teachers take care to expose students to values alternative to those presented on television and other media.
I think it's important that you share some of your views on values. I do the same with my students. This whole notion of being perfect is ridiculous and is pushed into the media frenzy. I couldn't believe the preview for the movie coming out: http://www.rottentomatoes.com/m/bratz_the_movie/
I was horrified to see this preview and think of all the parents raising teenagers these days. Is this really how teenagers want themselves to be? Two thumbs up for the actual movie I was seeing though: http://www.rottentomatoes.com/m/ratatouille/
I just wanted to add a bit of a lighter sentiment in this deeply sensitive topic.
Emily's comment about her students demanding differentiation is interesting. I often feel like I’m trying to “sell” biology to my students rather than “teach” them about biology. At what point are we no longer differentiating to meet the needs of various learning styles and intelligences, but rather we’re negotiating with our students in order to get them to complete assignments. When I was in high school there was just a general sense that school was important. Teaching in a setting where education is not valued or seen as something that is unimportant is like selling refrigerators in the South Pole. Last year one of my colleagues had a sign on her door that read, “Teachers open doors, but you have to walk through.” (or something like that) Maybe that’s why we always had so many students in the hallways? Not because of her sign, but because education is seen as optional.
Don't you think we are already living in a society based on perfection?
I found the Shakespeare article to be comprehensive and well balanced. It outlines opposing viewpoints (I liked the enumeration of the various combinations of positions in the abortion and testing debates on page 666). It also acknowledges the required nuance and personal realities and the fact we are discussing actual lives. He states that absolutes will not serve us well, and he quotes Kerr: “engaging with the complexities of the problem is essential if a just outcome is to be achieved.”
There are several guiding principles that guide my framing of this debate, and I feel I must disclose a political position regarding abortion in general, for this view largely shapes my view on abortion as it relates to genetics testing and counseling. I am from the Clintonian “safe, legal, and rare” school of abortion policy, and I support the position that the final decision must always reside with the mother. I also believe all policies regarding the beginning and end of life should preserve life by default. Our society must strengthen supports for families, particularly those with members in need of extra services. Such supports, including adoption, will help minimize abortion for impaired and non-impaired fetuses alike. But since fetal condition is a factor in the abortion decision for so many parents, the disability community must be included in the debate, as they have unique insight and experience. Ethical medical communities must adopt best practices that automatically provide them several seats at the table. As Shakespeare shares his belief that “society should value disabled people, alongside all human life” (p. 679), one is reminded of the Chinese philosophy described in Buck’s The Child Who Never Grew: so-called “impairments” are valued as part of the normal variation in humanity.
I contend that abortion policy and fetal impairment are intellectually largely “orthogonal”, in that abortion policies should be “impairment neutral.” Laws similar to the British one that provides for “terminations beyond a 24-week time limit in case of ‘severely handicapping’ physical and mental abnormalities” clearly discriminate against those with impairments and should be overturned.
Additionally, information is not policy. To provide parents genetics information is not the same as coercing then into a decision. I would propose that testing be mandatory unless explicitly waived (as for religious reasons), but the right to carry a pregnancy to term be explicitly protected, both legally and culturally. Education and support services, including adoption, must be part of mandatory and uniform counseling. Materials should be uniform (think of a more humane “Miranda warning”) and include the voices of the disabled. Some people’s concern that “disabled people’s testimonies, arguing that their stake in these decisions undermines their capacity to make objective judgments” would be laughable if not so sad. Objectivity is not always the ideal when discussing matters of the human condition. Advocates and families will also need to be included, since “just because a person is unable to communicate or articulate their views clearly, it does not mean their life is not worth living.”
Finally, policies may need to be revised if individual decisions aggregate into undesirable social outcomes (as in India’s sex selection problem, where they may need to consider restriction or prohibition of sex disclosure at some point).
I think Shakespeare has learned something from W. Shakespeare who reminds us that "Love's not love which alters when it alteration finds…" (Sonnet 116). We have to get over alteration at some point, as Emily reminded us, because (pg 71) "new genetics tells us that everyone carries several mutated genes and, consequently could be said to be implicity 'genetically diseased.'" Where would it stop? Whe and what would we decide a normal, acceptable, desireable set of genes would be, and once we drew the line, how would we define the relative baseness of deviations from this norm?
Shakespeare points out three schools of thought: one in which it's a moral responsibility NOT to bring alterations into teh world, one in which we can't seek to censor alterations, and one in which we shouldn't seek to censor alterations, but some would be good to center depending on how bad they are: who they hurt, and how dysfunctional or draining their presence may be. Ranking alternations on a spectrum of mild to worthy-of-extermination (eek!) requires a discussion of the very purpose of life.
If human life is about being productive, about loving, about communicating, about growing, about making someone happy, about serving god, about taking care of the planet, or about being part of a family, there are a wide variety of mutations that would get left out by one scale, but would be protected by another. If we try to weigh a cost-benefit analysis of having a baby with a mutation, you would have to be able to pin down what you believe the essential benefit of life really is. As Shakespeare pointed out by interviewing patients and their families about whether they are in favor of prenatal screening, even within immediate families there is disagreement on these fundamental issues of philosophy.
Shakespeare goes on to advocate for a voice for people with disabilities in this discussion to the extent that it is possible, relevant and reliable. It reminds me of the first few pages of Sally Smith's book "No Easy Answers," where she details exactly how special it can be to work and live with someone who's learning difference make them extremely challenging to work and live with. The very children that can cut through your worst mood and deepest despair about human goodness and hopefullness are sometimes themselves the clearest examples of struggle and unfair circumstances. Smith points out that sometimes "problem children" have a light in them that makes that even more dear and special than their typically developing peers.
Having worked with Autistic children I have heard (and said) over and over how calming and reaffirming it can be to spend time with a calm nonverbal child who is soothed by something simple and stedfast in his predictable routine. Getting a nonverbal child to hold your hand and trust you can be a feeling greater than having 50 typically developing students do the same. In other words, our understanding of the costs and benefits of altered lives is incompltet if our exeriences are incomplete. By the same token, kids who were special and inspiring to work with as children, grow up and suddenly their ways aren't cute, and their lack of independence isn't endearing, convenient, or safe. At this point, the special things about them are sometimes overshadowed by the disparity between what we expect of an adult and what they are equipped to do. When training counselors to work with special needs middle schoolers at a camp I would always remind them to stick to behavior modification plans because what is a cute behavior on a pre-pubescent, cheery, 8 or 9 year old, is not going to be cute, or nearly as functional if they're still doing it as teenagers. In other words, experience is the only way to gain real insight into the cost-benefit relationship of having a child with alteratoins, but these costs and benefits change when our expectations of that persons life change as they age.
This sentiment was echoed in Pearl S. Buck's memoir when she noted how easy and pleasant it was to have her daughter stay at a cheery toddler phase for longer than normal…but how the despair for her daughter's differences grew as the disparity between age-related expectations and actual growth grew. The impact these messages must have on classrooms is to develop an understanding that there is beauty and something to love in any being, but that our ability to percieve it changes when our expectations of that being's role in the world changes. Therefore we do have to do all we can to encourage people to be as functional as possible sothat their strengths and their specialties can remain perceptable even when their dis-abilities threaten to overshadow them in magnitude. This very simply means that we celebrate the beauty in every student and hope that it grows and stretches our appreciation for the uniqueness of the individual before we get bogged down in trying to fit them into an economics equation of worth in the world.
One of the interesting things this discussion stirs up in my mind is the nature of altruism and whether or not altruism is indeed a selfless act. If you receive joy or happiness, or a sense of purpose from helping others, is that truly selfless. When I meet people and tell them I teach in DC I get responses like, “Wow that’s amazing,”and “that’s so good of you.” I always think to myself, well, after all, I am getting paid for it so I might not be as noble as you think. Undeniably the pride I feel when I help a student is part of why I enjoy teaching, so to me that makes it even less of a selfless act. I guess the question, as it relates to this discussion is to what extent might the self interests of the non disabled be served by protecting the disabled? Before teaching I worked in a lot hospitals as both a researcher and a care provider. I’ve too often seen life and death decisions made based on how they affect the decision marker, rather than the individual affect by the decision.
Without steering this discussion to far off track I would like to make one comment on the issue of abortion. I cringe whenever I hear people debating the issue of when life ‘begins.’ Is it at conception, at birth, at 15 weeks, 20 weeks, etc? I cringe not because I’m “pro-choice” or “anti-choice” but because the question of when life begins (a question I realize no one has raised here) implies that a man and a woman unite nonliving material during procreation. Eggs cells (oocytes) and sperm cells are “living” cells, so there is no point during conception, fertilization or gestation when life begins because “life” has always been present. The question, as I see it, then becomes one of personal reproductive rights. I personally am pro-choice but more specifically I’m pro- “supporting and educating individuals so that these difficult decision need to be made less frequently.”
This is sort of off the topic of the morality of eugenics vs. genetics debate of this paper and the discussion above, but what I kept wondering while reading through the article was what is the financial impact of having a child with a disability? I know the amount of financial support required depends on the level of support needed for the disability, but this also has to have a profound impact on decisions that parents must making in having a child with a known disability.
Here is an article I found on MSN.com regarding raising kids with disabilities:
With the state of our health care system, most of us are just one catastrophic illness from being bankrupt as it is. How does this impact a family raising a child with a disability? I think about this a lot because as an avid gravity mountain biker, there are so many cases of life threatening and paralyzing injuries that have happened to some people close to me. They are struggling to make ends meet and pay off the hospital expenses even after health coverage (which is usually limited for mountain biking). It's a choice I make to be involved in such a dangerous sport. Should I be liable for injuries that might occur while I'm riding? I could suffer from a financially devastating injury just as easily stepping off a curb wrong on the street. A child that I have by choice could also be born into a world with a disability that is just as financially devastating. Who should pay for all this and how much should I be liable for? I know these are more politically driven questions regarding our health care system, but money is a big driving force behind many of the decisions we make within our society and our lives.
I have a friend who works as a therapist/teacher for an organization in fairfax county with autistic children. Next time I see him, I'll have to ask him where his paychecks come from and how (and how much) parents are paying for him to visit their households once a week for his 2-3 hour sessions.
As a special education teacher, I deal daily between the intersection of nature and nurture. Although it is certainly true that knowledge and social norms are constructed we do need to acknowledge the existence of real biological and cultural difference among individuals and between groups.
I have a difficult time thinking about my students in the context of biological mistakes that might have been prevented. In fact, I think it is important for educators to separate the debates over the existence of learning disabilities and the need to assist students who have them from the debate over eugenics and genetics. I agree with the author that the role of biology in the existence of learning disabilities has important implications for disability equality, but as a teacher I can’t be overly concerned with why my students are the way they are and need to focus instead on recognizing their unique needs and meeting them.
It is not enough for teachers to recognize the reality of learning disabilities, regardless of their causes, teachers must also engage parents in an ongoing discussion about the multiple intelligences which their children possess and the need to embrace their children’s learning abilities as differences and not deficits. This struggle will become more and more difficult and important as our society continuous to experiment with scientific ways of pre-determining our intelligential destinies.
It’s funny that a couple of you have mentioned Pearl Buck's account of raising Carol. I immediately thought of another of the assigned texts. Mark Haddon’s The Curious Incident of the Dog in the Night-time. Christopher has forever changed my perception of children with disabilities. Without getting too off track and summarizing the entire book, I just wanted to mention the relationship he had with the adults in the text. Christopher was very straight forward and physical when angered, two of the many reasons why it was extremely hard for the adults to deal with him. His mother so distraught, decided to give up completely and move on with her life, not including him. His father expressed continued frustration with the simplest things with his son. Christopher was a handful, to say the least. This was just a fictional example of dealing with an autistic child, but many of the aggravations are faced by parents everyday.
In light of the Shakespeare article, like bankse, I wish he would have focused more on the realities parents with disabled children face. As teachers we deal with these children and the parents of these children. Parents who too often feel teachers have certain obligations because of their child’s disability. The lashing out that kholtschlag brings up is undeniably a ‘manifestation of their frustration’. Should we as teachers be in favor of this process of genetic screening, genetic counseling, or the process of terminating a fetus to make our jobs easier? Of course this issue is bigger than the ease of teaching; just wanted to point out one result of the ‘trickle down’ effect.
Wow, where to start here. First of all, I found this argument simultaneously fascinating and maddening for a multitude of reasons. Rather than rehash them all here, as many of you have pointed to the same material in your posts, I will comment on a few new things here. there are many cultural implications to dealing with members of society that are disabled, just as there are when dealing with children and old people. There are ALWAYS adjustments to be made, accommodations to meet, alterations to occur. This is the nature of difference in our world, and thank god for it! In reading this article, all I can say is: BRAVE NEW WORLD. When we stop celebrating difference — pure, natural, caused by factors beyond our control, we as a society enter a slippery slope to pure, unadulterated, forced selection done by humans for the “sake” of humanity. Arguments on eugenics fell by the wayside decades ago because they are purely WRONG!!! It is amazing to me that these same scientists advocating for prenatal testing are also closet eugenicists, who I believe possess shoddy morals and values that have no place in science. The closer we move to selecting which individuals should be born into our society, the closer we come to validating “normal” at the expense of “abnormal”, the closer we get to eliminating those “rotten apples” spoiling our PURE ARYAN RACE (do you see the Nazi Germany connections here???) After Hitler’s concentration camps that slaughtered anyone seen unfit for life (the old, the young, the infirm, the mentally challenged, the physically deformed), the world said NEVER AGAIN. Well, I ask you, how is the process of prenatal diagnosis and the abortion of fetuses deemed “unfit” for life any different??? simply because you are destroying a life because it will be different from a normal life (and who defines normal/abnormal anyway?) does not mean you are not participating in the same system of selection of those committing atrocious selection processes in the past. Let me say here that I am ADAMENDTLY pro-choice, and it is ALWAYS the woman’s right to choose. What is good for one female is not necessarily good for the next, and vice versa. Yet, there is something to be said for the fantastic good those deemed “disabled’ bring to our world. The old give the gift of experience and wisdom, the young the gift of surprise and pleasure at exploring the world for the first time. Pearl Buck’s daughter’s life gave hope to thousands of people struggling with how to deal with and help their mentally challenged children. In short, no life is a waste, no matter how hard it may be to live it. Having and working with children with mental and physical disabilities is a challenge and a blessing. I spent three years working summers at a camp for kids and adults with mental, emotional, and physical disabilities, and those are some of the fondest memories I have. The sheer joy, laugher, and pleasure the campers derived from things like swimming, arts and crafts, karokie, and talent shows are indelibly carved into my memories. I have never experienced such a shower of pure joy and love and devotion as these individuals possess and administer with ease to those around them. Not that there were not hard and frustrating times, and that each individual was always perfectly this way. They are people, and have moods and good and bad days (re: our boy with autism describes it best!!). BUT, the invaluable contribution of these individuals to society, the respect they deserve, the love they need, should never be forgotten or diminished. Like Shakespeare argues, our society “views disabled people as an unnecessary social cost.” Whose cost is it, really? We spend money on porn, on entertainment, on destructive war. The fraction that we spend on disability education, on building ramps and elevators pales in comparison to this!! When actors are paid 30 million to make a movie, how can we not justify a few million put toward supportive services for people with disabilities??? It is crazy, and we have our morals lopsided, to say the least. Who are we to place value on one life over the next (obviously you can see I don’t believe in the death penalty either)? Who are we to judge? The point for us here is to teach TOLERANCE AND ACCEPTANCE to both our kids and those we encounter in our daily lives. Working with and learning from the elderly, from children, from those with disabilities is a gift, and like Shakespeare argues, we should spend resources on “creating an inclusive and barrier-free society, and promoting the civil rights and independent living of disabled people. Society should value disabled people, alongside all human life.” Instead of spending all of this money on testing of people, on the exclusion of some members of society before and after they are born, why not spend it on educating people to be humane, to embrace and accept difference for the beauty that it is. The world would be boring if we were all the same, and if we start selecting who should and should not be granted membership in this world, it will not be long before variation will be a thing of the past. And, if we do push for the testing and consequent elimination of people not deemed “normal,” what will happen to our kids who become disabled later in life and need care, what will happen to kids born even though a disability was detected? Will they be marginalized and not given a chance, simply because they were born when they were not “supposed” to be? Will programs for them not be created and funded? This is a serious argument to take up in the classroom in regard to the information in this article, and an issue we need to examine as educators today. First, though, the more we can do to encourage the teaching of tolerance in our classrooms, the better, as then, in some small way, we are doing a bit of our part. For some great tools and lessons on teaching diversity and tolerance, check out the Southern Poverty Law Center, I use these lessons all the time in my class, and they are a hit with my kids!!!
really, check them out!!!
Tori, I appreciate the passion of your post and it is certainly a hard one to follow. I just went back and read my previous post (some agreed with this it sounds as though you disagreed). I wrote…
"Although her daughter added valuable contributions to the life of Pearl Buck herself, her mother recognized that her daughter would never contribute anything to greater society. I felt this was a healthy and realistic outlook given her daughter's condition. This is why I initially felt many of Shakespeare's accusations that the public must learn to view those with disabilities to be valuable/productive members of society to be overly naive and idealistic."
After reading your and several others' postings, I feel the need to refine this a bit. There is an enormous difference between pushing your mentally disabled child to do things outside of their biological capacities (after attempting this Pearl Buck eventually realized this was unfair route for her daughter) and not allowing them to live at all (eugenics). I think Buck believes more than most that the severe mentally retarded are capable of leading fulfilling, happy lives, but we should never expect them to make the same contributions to society that we might expect of others. What makes one person's life valuable is not the same for all. The unfortuante situation, however, is that properly raising a severely disabled child takes an enormous amount of time and money (exponentially more than that of a healthy child). As many others have since mentioned, I think Shakespeare's failure to acknowledge this is where his argument falls short of the mark. If you are pro-choice, it generally means that you recognize it is a woman's right to determine whether she is prepared to have a child or not. Is it fair to say that some women may not be ready to have a severely handicapped child? I think this is a fair judgment for women to make. What do others believe?
Here I am, a 27 year old white woman who recently got married and who will likely try to have a baby in the next two years. No one in my immediate family is “impaired” in terms of having life altering diseases or abnormalities, unless you believe that being legally blind, having dyslexia, and having a serious history of depression is a disorder. It’s a matter of opinion, as T. Shakespeare writes on page 669 of his article Eugenics, Genetics and Disability Equality, “It is increasingly common for clinicians to promote the blanket term ‘genetic disease’, to refer to genetic conditions such as cystic fibrosis, achondroplasma, etc. Yet the disability movement, and many others, would contest this labeling of all human genetic variation as ‘disease’”. I am unsure of whether I view my predisposed genetic attributes as a disease or not, but I do know I want to have babies (preferably three). I also relate to Shakespeare conclusion that, “impairment is a part of the human condition”. Who is perfect? Even if humanity is somehow rid of all impairments, I bet humanity would develop another one.
After reading the heated, personal and interesting posts, I came away with a few thoughts I thought were important:
1. Abortion is absolutely tied to this debate between eugenics, genetics and disabilities. I don’t want to go any further than this statement because I am still not sure how I feel about this issue. What a loaded topic!
2. Parents will never be able to give their disabled/impaired child the choice of deciding to go ahead with life or not.
3. Disabled people should be treated equally, should be heard, and should be included.
The second point is important to me because whether or not you have a child with a disability is essentially your choice. I do believe that. I don’t know if this is a slippery slope, but I think I believe in humanity too much to believe we will begin devalue certain life because some women/men/families do not think they can care for a disabled child. However, a disabled child who is born is just that, a disabled child. How can parents and teachers learn to help that child as much as possible? What will make that child grow to be happy? I think, the point is to focus on the child that is already living than judge what choices others will make.
My third take away is that I believe it essential that disabled people have a voice in this debate of genetics and eugenics. I read posts about Pearl Buck’s book and Mark Haddon’s book and both relate extremely well to this topic. I also thought about Train Go Home and the pride both the deaf community felt and how desperately Leah Hager Cohen wanted to be apart of that esteemed group. If asked would Sophia or James wish that they had the cochlear surgery or would they rather be who they were born to be? I don’t know, but they should be able to weigh in on their life experiences.
In further response to Tori's posting, I strenuously object to the conflation made between the genocidal eugenics as perpetrated by Hitler and the private decisions made by pregnant mothers (and partners) after learning of a genetic variation that will cause a specific medical condition.
Putting aside whether drawing analogies to the Holocaust is (ever?) appropriate or helpful — especially in as nuanced and complicated a discussion as this one — there is a fundamental difference between government-imposed intrusions on the individual's decision-making in this area and a government that allows individuals to make their own choices.
And speaking of Jews….there are a series of genetic disorder common to Ashkenazi Jews (mainly those from Eastern Europe), the most well-known of which is Tay-Sachs. It is a terrible disorder (disease? disability? variation? condition?) that, according to this source, results in death usually before the age of 4. Meanwhile, the following describes the child's expected life:
a relentless deterioration of mental and physical abilities occurs. The child becomes blind, deaf, and unable to swallow. Muscles begin to atrophy and paralysis sets in. Other neurological symptoms include dementia, seizures, and an increased startle reflex to noise.
Tay-Sachs is certainly not the only tragic condition I could pick as an example. But it is one that has been virtually wiped out through genetic screening. Testing is very common among Ashkenazi Jews, and since it is a recessive disease, it is fairly rare.
But testing is relatively new. In fact, my grandparents had a son (after my father was born) who died after 2 years of battling Tay-Sachs. I know my grandparents would have done anything to spare themselves and Uncle Dick the horror of those 2 years. I do not tell this story for sympathy or to make it harder to disagree with me…but rather to make clearer the problem with Tori's either/or position.
Like Emily and several other people, I find the overall subject to be touchy, which is why I neither condone nor condemn the “fixing” or termination of a pregnancy based on a genetic mutation. Ultimately, the decision rest solely on the parties involved… the parents. Right or wrong, society defines what it considered the “perfect” life. Sometimes people may not agree, but still aspire, either consciously and unconsciously, to live within the preset guidelines. In the end, it is a matter of choice. Some people are not strong enough to care for a disabled child. Thus, for the sake of the child and themselves they may elect to terminate the pregnancy. There are some people that realize they may not be able to love a mentally retarded child as much as they hope, thus may not feel comfortable delivering that child. Adoption can be cited as an alternative, but there is a possibility the child will endure pain when searching and finding birth parents, or enduring the pain of never knowing (depending on the functional level of the child).
I also see no problem with “fixing” a pre-delivery. If people have the financial means to do so then they should have the right. Shakespeare and several students commented that this will increase the gap between the “have” and “have-not’s,” but class is a system that will forever be in place. Those passionate enough about changing their social class will change their social class.
The right to fix or terminate a pregnancy based on a genetic mutation is extremely personal, and no one else has the right to pass judgment based on one’s personal decision. People are not alike. We all have different boundaries and limitations, we are in different financial situations, and come from different family backgrounds. Only I know what is good for me.
Oh man I am a huge genetics buff I must admit. The science nerd, educator, and future doctor in me certainly enjoyed reading the Shakespeare article. It reaised some of the major issures in the major genetics/eugenics debate. As part of my genetics unit in my Biology class, I would always have my students consider what they would do if they covered that their baby had a disease before it was born. I also have them read about the Buck Vs. Bell case and the "degeneracy" of the 1900s. (http://www.eugenicsarchive.org/eugenics/topics_fs.pl?theme=39&search=&matches=]) What I find most interesting is that the idea of "degeneracy" to a certain extent still exists today among many people in our country. The idea of raising a child who is mentally or physically impaired is seen as a nightmare.
I think there are many things we need to consider:
1. There are still many connections being discovered in the body. Can we really justify changing a gene that might make a child autistic if we don't know what else that gene does?
2. Having a mental or physical impairment is not a curse. I had a student who was born with a spinal and brain injuries resulting in her being paraplegic and she has said numerous times that she would never want to be born a different way because she has become an extremely strong person by overcoming her adversities.
3. If we do use technology to detect if a child will have a mental or physical impairment, it may help parents secure necessary resources earlier to help the child once he or she is born.
Wow, it is a heated discussion that draws from every ounce of our being. The classic question of whether one should play God or not? Bio-ethics, it is a minor at some colleges and a major at others. I myself am a former bio-major and there have been many heated discussions, such as the ones that I have read on this forum. However, I find it hard for anyone to make such a big decision unless that particular individual has been placed in that perdicament. But just to drop a little knowledge; say if it become a common practice for parents to disgard a fetus if it is known to them that the child would suffer from a learning disability or is mentally retarded. If this was the case we would be with great inventors, writers, poets and many other individuals who have contributed to our society. How about Hans Christian Anderson or Albert Einstein; both that with suffered from mild to high cases of dyslexia, a learning disability. Where would we be without these gentlemen. I don't think we really can debate genetics/eugenics unless we were truly in a situation that gave us the power to determine the future of a child that may carry a known learning disability.
This can definitely be a loaded conversation and it's clear that everyone has really be racking their brains to figure out where they stand on these issues. I was really drawn into the part of the article that debates under which conditions women should be having abortions. I think the die-hard "pro choice" in me is feeling that if we (or at least pro choice people) say it is ok for a woman to choose an abortion within a certain time frame for any reason, then isnt it also ok then for a woman to choose an abortion because of a genetic mutation? women decide all the time to end a pregnancy because of the social or economic costs of carrying that child to term. However, I also understand the real dangerous implications that if we as a society promote the norm that genetic mutations (which produce our wonderful kids!) are undesirable then arent we promoting prejudice? This point was made most clear when Shakespeare made the connection to homosexuality. It seems ludicrous to me to consider aborting a child because he/she might be homosexual?! BUT i'm sure not everybody feels that way and since the prejudices/challenges that exist against homosexuals and people with disabilities are all socially-constructed, then one can assume that there are people out there who think aborting a pregnacy because of sexual preference is justifiable. Does that mean that because I think it's ok to abort a pregnancy b/c of a genetic mutation that I"m just as "bad" or prejudice as someone who is homophobic? This is question does make me pause and change the way I think about the issue. I dont really know when it is "ok" to have abortions and when it is not, but in my steadfast desire to maintain a woman's right to choose, i still feel like if a woman wants to end a pregnancy b/c of a genetic mutation, then we have to let her?! Then again what if a woman wants to end a pregnancy b/c the baby is a girl, is that ok? This sure is a slippery slope…i'm torn.
Ok, so to turn things around a bit. I became interested in learning some of the history of eugenics in the US after reading this article, especially in regard to the Tuskegee Experiments in which poor black men with syphilis were studied and left untreated for the disease so doctor’s could witness the effects of it on humans. This is one of the most high profile instances of public knowledge of what happens when eugenics and race go totally wrong, but it offers an example of the slippery slope we ride when taking matters into our own hands and playing god with our future children.
Here is the link:
and the section on the Tuskegee experiments:
The Tuskegee Scandal
Racism and eugenics came together to produce odious laws, but also to create one of the worst scandals in the history of medicine. In 1929 researchers from New York decided to observe the course of a disease if it was not treated at all. They recruited hundreds of poor black men with syphilis, and watched them for 40 years — without treating them. Syphilis is a sexually transmitted disease; untreated, it can lead to tumors, blindness, deafness, paralysis and death.
In 1925, there was a meeting of the Advisory Council of the Milbank Fund, a philanthropic group that worked "for the promotion of health, the lowering of the death rate, the increasing of the efficiency rate and the lengthening of the average American life." The council discussed care of the elderly, and the meeting was downbeat. According to a report in Birth Control Review (January 1925, p. 22), they were asking questions like, "Is it really worthwhile to live long?" and "How much are we willing to pay, in cash, for added years of existence?"
One participant, Dr. William H. Welch, Director of the School of Hygiene of Johns Hopkins University, asked, "Aren't we just keeping the unfit alive at the expense of the fit instead of letting nature do the weeding?" While that meeting was about care of the elderly, a few years later, the Milbank Fund put up cash for a callous study of "letting nature do the weeding." Starting in 1929, Milbank provided the funds to recruit the victims of the Tuskegee Syphilis Study, by offering to pay $50 apiece for their burial expenses. In 1932, the federal government took over the study, but Milbank continued to pay for the burials. After treatment for syphilis became available in 1936, the men were still not told they had syphilis, still not treated. They were told only that they had "bad blood."
The governmental body that took charge of the study was the U. S. Public Health Service, which is led by the U. S. Surgeon General. The Surgeon General at that time was Dr. Hugh S. Cumming, who had been a member of the Advisory Council of the American Eugenics Society in its early days and lent his prestige to the organizers of the Second International Congress of Eugenics.
The purpose of the Public Health Service is to protect the health of society. When an epidemic is spreading, it is the PHS that has responded, by necessary but inconvenient means like imposing quarantines on ships that may be carrying infected passengers. A quarantine — isolating people who may be carrying a contagious disease — makes sense when you are fighting smallpox. But there is a danger of abusing quarantines. For example, many eugenicists wanted to impose a quarantine of the "feeble-minded," in order to keep them from breeding. When Robert Yerkes ran his intelligence tests that were used to justify laws restricting immigration, he was working for the Public Health Service. And the anti-immigration laws were understood at least in part as a public health measure.
Apparently, it was easy for public health concerns to blur the differences between contagious diseases, mental problems, and even unwanted ethnic groups. And syphilis among blacks seemed to combine these issues.
Also, a great book on the history of such in the US that I just finished reading, called Medical Apartheid talks at length about what happened in the past when we overstepped our bounds medically to test on humans….should we learn from events of the past? Should we just keep repeating them until we get it right? These are the questions I am left with at the end. Regardless, however, this book is a great read (see description below) so check it out if you have a chance!:
A new report by the American Cancer society shows that African-Americans are still more likely than any other group to develop and die of cancer. The study states that socio-economic factors play the largest role in this disparity - African Americans have less access to health care and information, and are less likely to get screening and medical treatment. Well, a new book offers one answer into why Black Americans deeply mistrust American medicine.
“Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present” is the first and only comprehensive history of medical experimentation, abuse and neglect of African Americans. The book reveals the hidden underbelly of scientific research and the roots of the African American health deficit. It begins with the earliest encounters of Blacks and the medical establishment during slavery, looks at how eugenics and social Darwinism was used to justify medical experiments conducted by the government and the military - and offers new details about the infamous Tuskegee Experiments that began in the 1930’s. “Medical Apartheid” also examines less well-known abuses and looks at unethical practices and mistreatment of Blacks that are still taking place in the medical establishment today.