Please use this week’s material to address the following prompt:
If disability is an important part of a person’s identity, should we conserve disability rather than try to “fix” or “cure” it? Think of the implications of your answer here.
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I would think that the question of “fixing” or “curing” a person of a physical or mental difference depends entirely on the person in question, and speaks to the question from this week’s Voicethread of who enables or disables. Certainly a person may choose to accept their differences as part of their identity, but how far do they accept the interference to their daily easy of functioning? Do they wish, as Dr. Garland-Thomson said, to take advantages of the resources available to them. This begets the question of what constitutes “fixing” or “curing”? Do prosthetics count as “fixing” an amputee’s loss or lack of limb? If a person, such as Mahmoud who needed prosthetics accept that he was “fixing” himself then?
I personally don’t view accepting help as a form of “fixing” or “curing”; people do what is best for them. I think that if a person saw their disability as a part of their identity then it is without question; you cannot force a “fix” or “cure”. And I completely disagree with the whole idea behind needing to “fix” or “cure” that which society does not deem “normal”. The concept of “normal” is subjective even on the person to person level. As Dr. Moore mentioned, we tend to fixate on perfection. But this fixation can lead to horrific consequences such as the loss of millions of people during the Holocaust who the Nazis did not see as fit for their “perfect” view of society.
Rather than calling it a matter of conserving disability, I think society as a whole needs to first and foremost address ableism and the stigma associated with having a mental or physical disadvantage. Education and communication are key to breaking down ignorance and stereotypes. A major issue lies in the limitations of language, and we have already mentioned how the term “disability” itself holds negative connotations. By asking people with mental or physical differences how they would like to be addressed, including them in the discourse of ongoing education measures, and giving them the chance to be a part of society to contribute in the way that they wish, we restore dignity as Alberto Cairo discussed in his talk. Rather than conserving disability, we have the capability to view differences as just aspects of a person’s life that they may or may not need help for. Removing stigma and empowering people enables; people should be able to feel that their own lives are meaningful without this view that they are “wondrous” or “exotic” for functioning with their differences.
Yes and No. However, I do believe the bigger issue is more about how does society prevent exclusive sentiments toward people with disability. Certainly, the answer to the prompt lies in a gray area, as people integrate disability into their identities differently. The integration can be positive, negative, or a mix of both.
Dr. Garland-Thomson profoundly comments, “Disability is a category that people do not embrace or willingly enter. Instead, people are identified as disabled.” Though this does not necessarily mean they wish to be identified by disability, the nature of identity is still inherently uncertain.
Bass-baritone Quasthoff, for example, changes his attitude about the media referencing his success to his disability only after when the media stopped referencing it. “Now they never mentioned it and now I “want” them to”(85). In this case, disability is embraced in the music industry—though mix feelings are often evoked in musicians with disability. Particularly in the arts, a message of deep appreciation for the different is powerfully emphasized. From a socioeconomics perspective, I however assert that disability becomes easily embraced and therefore “maintain” when the “disabling” quality affords economic stability and resources. This brings into light a greater social justice issue.
The issue of ethics also comes in when society is challenged to decide what worth fixing and not. In the classics, the Greeks warn about the dangerous downfall of hubris, as science continues to further advance in profound proportions. From this weeks theme lecture, my perceptual understanding of the social issue and disability has significantly expanded and challenged many assumptions.
I say neither, we need to move towards a world view that disability is a fact of life. By “curing” disability we remove a place for the disabled in society and tell them that they are not good enough to live full lives and this could lead to the scary road of genetic engineering fuels eugenics. And if we choose to preserve disability it is possible to only see people as the condition rather than.
As Dr. Garland-Thomson continually told us, it is all about how society constructs its views of the disabled. In this past this has consistently meant viewing a person as overcoming some impairment, while what is truly necessary is a realistic world view of the disabled. Yes there will be some difficulties performing everyday task, but as Dr. Alberto Cairo said, “There are no scraps of men.” Removing the stigma of being identified as disabled is inherently the most effective way to help the disabled “integrating” into society.
Dealing with disability is certainly an issue of dignity and human rights, and by denying that right to live and lead a full/meaningful life is a violation of a person’s liberty and civil rights. This past week has greatly expanded my views to remove the medicalization of disability and view it as the social issue that it truly is
I believe that the two possibilities posed by this question are both too extreme to be effectively implemented. Disability should be neither conserved nor fixed; rather it is important that we as a society encourage the humanization of those with disability while keeping in mind it is important to do all in our power to make sure these individuals do not face hindrances in their daily life. Disability carries with it a story; each individual associates a different meaning with his ailment. Hence by implementing one standard protocol for moving forward in regards to disability we fail to take into account the interests of the individual. If we were to take definitive action one way or the other we would be guilty of doing what we would want if we were in the shoes of the individual and not necessarily what is best for him.
In her lecture Dr. Garland-Thompson noted how disability was highly stigmatized; most people are not willing to embrace the label or identify as disabled. In theory this stigmatization could make it appealing to eliminate disability; after if it does not exists it cannot serve as a stigma. Though the danger in this rests within its implications for human individuality. If we eliminate disability we eliminate difference and beauty, greatly homogenizing the world and taking away the story of the individual. Trying to “fix” or “cure” disability suggests that it is an ailment independent from the afflicted individual. This language implies that disability is something to be overcome and dehumanizes the individual who has the disability. Use of language such as “cure” or “fix” moves away from the people first language crucial for allowing the individual to maintain a sense of personhood. Therefore I maintain that disability should not be eliminated as by doing so we would eliminate a great part of a person’s world and compromise who they are.
While I maintain that disability is not something to be fixed I understand the toll that disability can have on an individual and assert that it is our responsibility to provide the appropriate amount of aid. Despite the fact that disability is an important part of an individual’s identity it can provide for a variety of challenges in daily life. It is important to note that disability is not medically defined and is established by different cultures in respect to physical being and environment. Often what debilitates the most is the physical environment – people’s environment makes it impossible for them to effectively maneuver without aid and they are seen as lesser. This stigmatization makes it impossible for them to be seen as equals to people without disability and must be eliminated. Human beings ultimately desire love and compassion, which is difficult to attain if they are seen as a victim of circumstances and not as a fully functioning person. Ultimately I propose that we must find an intermediate between the two given options; we must focus on eradicating the psychological, social and economic hardship associated with disability without taking away part of a person’s identity.
I agree with what Akanksha says in her response. It is entirely up to the person in question whether they would like to get “fixed” or “cured”. I believe this is a difficult question to answer because although their disability could be a big part of their identity, having it “cured” could go a long way to facilitate their life. As humans we strive to fix and facilitate our lives and if those are the reasons for “curing” them then I feel that it should be done. Although the definition of a disabled person varies with each society, I feel that if it can be “fixed” or “cured” then it should be (if the disabled person wants to of course).
I understand the concerns of my classmates when they say that by “fixing” or “curing” someone it’s as if it’s being implied that the individual is being seen as less of a person with their disability and as not normal, but in the end its about helping to facilitate someone’s life. I understand though that there are a variety of conditions that are considered disabilities and no matter how hard we try I feel that “fixing” all of them is not very likely to happen. Because of that we have to make sure that although we are trying to “fix” disabilities, we need to incorporate and invite disability into society and not give the people who are disabled the feel that they are not normal. Although with disability there comes hardship, there also comes beauty and individualism and that is what shouldn’t be changed.
I think this is a difficult question for us to answer because we are aware of the most assumed privilege: ableism (I am assuming for our class, and if not please do not take offense and clarify for me). And this topic this week, even for a brief moment in our lives has shown us how the world isn’t made for everyone, just the majority. I believe that because we don’t mean to exclude, it feels natural and helpful to bring those in the minority to the majority. But by using our methods to bring the disabled to “normal” isn’t beneficial, because like we all have addressed, it sounds like we are trying to “fix” them as if there is something uncomfortably wrong with them.
Sorry. All of my word document didn’t fully copy and paste.
I think this is a difficult question for us to answer because we are aware of the most assumed privilege: ableism (I am assuming for our class, and if not please do not take offense and clarify for me). And this topic this week, even for a brief moment in our lives has shown us how the world isn’t made for everyone, just the majority. I believe that because we don’t mean to exclude, it feels natural and helpful to bring those in the minority to the majority. But by using our methods to bring the disabled to “normal” isn’t beneficial, because like we all have addressed, it sounds like we are trying to “fix” them as if there is something uncomfortably wrong with them.
I agree that we should do things to overall accommodate the disabled, such as ramps and braille on things, as well as continue to advance technology to make lives easier for those who want it. But we shouldn’t impose them onto the disabled community, but have it available such as Alberto Cairo did for Mahmood and the local community. I feel that also people should listen with the disabled community, as they listen to other underrepresented communities such as the LGBTQ, racial minorities, and feminists to know to how to make a more holistically represented community. I believe that its absolutely ok for people to make the choice to embrace or change their disabled identity, because its a label that is placed on them by others.
I agree with Kristine that the language limits the ideal that society is open to embracing disabled people. It holds very strong undertones of an us vs. them dichotomy in societal mindset, and its up to the individuals from both abled and disabled to change the culture from looking at disabled as a burden to regular people with regular issues. Especially when people hold many labels, intersectioned with sexual orientation, race, gender, and ability and what privileges are ascribed to what label.
Going back to one of our discussions from Thursday’s class, there is something unsettling about the idea of fixing and possibly perfecting people. It seems to take away what makes us human- the fact that we are imperfect, different, and may not be considered “normal”. However, I will say I agree with Akanksha and Jennifer. While I am also a bit put off by this idea of “fixing” people, it’s up to the person with the disability to decide whether or not they want to be fixed. Some people reach a point where they are completely comfortable with their disability; others have a harder time reaching that point. If they choose to seek a “cure”, then that is a choice they must make for themselves. With that being said, there is the danger of having a less diverse and natural society if the fixing option is overused. Also, this may cause greater stigmatization and stratification. Even if this “fixing” becomes a common procedure, it is not likely that everyone will have access to the cure. This could exacerbate the stigmatization of those without access, and the social views of people with disabilities may get worse.
As some of my colleagues alluded to above, while I believe people with disabilities should have the right to choose, the main goal should be to fix society. As Dr. Garland-Thompson mention during her lecture, disability is something that is highly stigmatized in our society. Such stigma makes it seem as if it is something that needs to be fixed, versus something that it a part of life and our society. I believe we can “fix” society by providing more information about disabilities. For example, the Music and Disabilities section of the Health Humanities Reader discusses how people with disabilities experience music, even without the ability to hear move, etc. This provides a different image of disability. While their experiences are different, it doesn’t seem nearly as foreign because they are experiencing the same stimuli “normal” people do, just in different ways. This changes the focus from how we are different, to how we are similar; decreasing the othering effect of society we see on the disabled today.
Today at church, a lady gave her testimony. She spoke on being born deaf and the things she overcame and how she has grown to love herself the way she is and value her lot in life as a gift and an opportunity. As many of my classmates have stated, I believe the need for a cure of disability should be in the hands of those living with disability and that will vary case by case. A person has a right to make disability as much or as little of a part in their identity as they wish. Who are we to define or label and who are we to decide for others? What we as a society should be focusing on is how to accept, love, include, facilitate, and value differences in others. We must learn to appreciate diversity in nature and integrate those living with disability into society as equal members. We need to facilitate environments that foster equality, functionality, and ability for those living with disability. This means transportation, resources, counselling services, etc. Whether one decides to seek a cure or treatment is up to them and we should be supportive either way.
As a person of privilege in that I am able-bodied, I am not sure how to address this question in a way that would provide the most helpful, well-rounded or beneficial answer. I think it’s important, as others have pointed out, to try to be more inclusive and accommodating to everyone, no matter their sex, gender, sexuality, SES and other aspects of their identity, but I honestly think that this question should be left up to those who identify as “disabled”, which really involves those of us in privileged positions to listen, rather than supply an answer.
What I do know and what I can supply to this question though, is that, with privilege, it comes with really deconstructing what is “normalized”, while also advocating, but moreso listening to those who are marginalized as someone who is privileged as a means for more equal footing. I think that privilege also comes with the responsibility of deconstructing language and de-stigmatization of what its means to embody a category that both the individual chooses and what society brings to that particular label.
Hence why I’m not sure if the question should be whether or not to conserve disability – I think that opening the world by making it more equal would change the reality of even asking a question of whether or not it should be fixed at all means. This is not to say that devastating or straining conditions shouldn’t be treated if the individual truly feels like they are more than their situation or conditions, but curing or treating someone of their so called “troubles” when it may not be that can be problematic in itself. Plus, humans are diverse and some things can’t be controlled for, so shouldn’t we aim to move toward a society that welcomes diversity, humanity and equality, rather than being fascinated, but afraid of adversity and contrast? Therefore, I’m more approving of conserving someone’s dignity and identity, rather than a reality or society that doesn’t do that.
I would say that instead of focusing on whether or not to “cure” or “conserve” disability, we should instead try to accept people for who they are. As Matthew said, society must learn to integrate disability into everyday life. By trying to eliminate disability or conversely try to conserve it, people will be labeled with the stigmatizing “disabled” term and be viewed in terms of their condition. An important point that Dr. Garland-Thompson mentioned a few times was that disability is constructed. As a society, we decide who is disabled and who is “abled” by stigmatizing certain individuals who fall into our predetermined disabled boxes. The power to integrate disability into everyday life lies in our hands. Dr. Cairo’s Ted Talk carried a powerful message about attempting to “cure” disability. Simply eliminating disabling conditions in the pursuit of making people more “abled” and “normal” was ineffective for allowing these people to live better lives by society’s standards. If someone wishes to fix their disability, then it is necessary to both cure their condition and teach them how to use their new abilities to reintegrate into society.
This question ultimately comes back to Dr. Labrecque’s question of “Is their value in limitation?”. Disability is defined differently by each person. Society tends to fixate on the idea that everyone must be perfect, both in physical and mental being. However everyone has their own unique views on what constitutes “perfection”. Someone with a disability may not view their condition as severely disabling as another “more able” bodied person. I think that through educating individuals about disabilities, society will be able to remove the stigmas about disability and recognize that each person is of equal value in society. Instead of trying to remove disability, we should focus on enabling every member of society by understanding that all lives are meaningful regardless of ability.
I think to say we need to fix disability is limited thinking. Dr. Garland-Thomson pointed out that disability is a social construct. Laws, societal norms, etc. all goes into a social construct. “Fixing” disability is just a band-aid on larger problem. When I think of other social constructs (race and gender obviously come to mind), we cannot just “fix” certain aspects of these constructs. Just because black people can vote does not mean they are being treated fairly. Just because a woman makes as much money as a man does not mean she is being treated fairly. These are symptoms, not the problem. And it is very unfair to put the onus on those affected. Black people, women, and disabled persons are not the problem, the society that subjugates them is (I apologize for the limited examples, just for brevity’s sake).
“Fixing” a disability would imply that the individual becomes “normal”. However, society constructs both the terms “disability” and “normal”. Therefore, in order to free an individual of his or her disability, then a change in the beliefs of a society must occur. As taught in many sociology courses, one cannot simply change the mentality of a society. Thus, the question of whether or not people should conserve disability or try to “fix” or “cure” it does not have a simple yes or no answer.
Nonetheless, as many of my classmates have articulated, the individual with the disability should have the autonomy to choose treatment, technology, or other methods for “fixing” the disability. If the individual desires to change a part of his or her identity to fit a social norm, then others can offer assistance. For example, Dr. Cairo provides Mahmoud with a prosthetic, and Mahmoud benefits from the ability to integrate into societal practices. On the other hand, however, Bethany Hamilton, the surfer presented in Dr. Garland-Thomson’s lecture, received a prosthetic arm to “fix” her disability, but she refused to use it. As a professional surfer, Bethany could not perform with the prosthetic arm, so she felt excluded from her “society” of surfers. As Dr. Cairo explained, social integration plays an important role in treating disabilities. Thus, an individual’s society may influence his or her desires for assistance. Furthermore, I came across a video that highlighted Gregor Wolbring, a scientist and bioethicist with double amputations. In the film, the director showed Wolbring driving and working in his laboratory. He then states, “He is happy […] he is a disabled person based on the definition that we use, but he does not see himself as an impaired person.” Therefore, one must differentiate between a person with a disability and a person with an impairment, for neither Wolbring or Hamilton felt impaired from their disability.
Although I believe that individual autonomy should guide the decision on treatment of a disability, I find one exception. For instance, modern science has reached a point that it can alter genetics to prevent a disease or disability from occurring. As a result, the individual who would have had the disease will not experience the physical or emotional harm associated with the disability. Thus, based on the principles of nonmaleficence and beneficence, physicians, in consultation with the parents, should intervene to prevent a “severe” disability for the child.
Video link: https://www.newday.com/film/fixed
I don’t believe that either of the options as listed in the prompt are correct ways of approaching disability. While it is important to keep the identities of the individual person, regardless of their disability, it is also sometimes necessary to “fix” disability. For example, what if someone is hit by a car and breaks their leg. If we take the extreme of conserving their disability, they will not go to the doctor, will not have surgery to fix the bone, and they will most likely have a physical disability and severe pain for the rest of their lives. I do not believe that anyone would take the idea of conserving risibility to that kind of extreme, but it is something to think about. Today, we have the medical technologies needed to fix the leg. With surgery and a cast, the leg can be healed, and the disability can be “fixed.”
On the other side of the prompt, we have the need to “fix” or “cure” all disabilities. Again, I do not believe that this is the correct way to approach disability. As we learned in the lecture, disability can be an integral part of someone’s identity. Who are we to take away someone’s identity? We begin to step into dangerous territory if we fix or cure all disability – think Nazi Germany. Also mentioned in the lecture was the beauty of disability. Before this week, I hadn’t thought all that much about disability. But, after hearing the story of the work being done in Afghanistan and the beautiful arts being done by people with disabilities, it seems less important to me to fix someone’s disability if they don’t want it to be fixed. It is certainly the individual’s choice!
The answer to this question is not simple, mostly because, as we’ve all come to understand throughout this week, the definition of disability is complicated and has many moving parts. Not all disability is created equal, and therefore the decision of whether to fix disability is a very subjective, ethical issue. It is up to the individual, and sometimes before the individual can make decisions, it is really up to his/her family. The problem I see with this question is with this juxtaposition of choice – it’s almost as if it’s an “either-or” scenario. Also, when we think of “fixing” or “conserving” I think we usually tend to think in terms of physical terms, the physical body. In my personal opinion, even if disability can be “fixed” it should not cease to be conserved. For example, the parents of a newborn with a serious congenital heart defect will most likely agree to surgery or catheter treatment if it means improving the quality of life for their child. However, when the defect (which may be seen as a disability) is “fixed,” that does not mean it is not conserved. In many ways, we conserve disability by the ways we talk about it; we enable it or disable it by our stories – the narratives shaped by the memories of our lives that we receive, tell ourselves, and retell to others. The parents of the newborn who once had the defect will at some point tell their child as he/she grows, that he/she had that defect, what they felt, how much they were worried, how much of a miracle it was that there were no complications, etc. Each of us is a story. Our stories define what we think about ourselves and how we view others. This fact has a very real implications on “the way we understand each other, treat each other, and share our shared world,” as Dr. Rosemarie Garland-Thomson said.
As I was reflecting on this past week, what I recalled finding most interesting is what Dr. Garland-Thomson briefly mentioned about slavery and civil rights. The more I thought about it and from the kinds of things I read, I realized how slavery enabled disability and because of that, it was an interesting concept. Abolitionists used disability to exhibit the evils and effects of slavery, while those who were for slavery, used African people who experienced disability as examples of how they are unfit for “normal” mainstream society. Dr. Labrecque has posed an important question during the last couple of weeks: is there value in limitation? I think there is. People who experience disability are valuable and often are often the most stable people in their communities. They conserve long memories and are available as listening ears, advice-givers, and sometimes the most dependable caretakers. For example, when I was a child, my regular babysitter was my wonderful Aunt Natalia, who had Downs syndrome. I was brought up with a belief that all cases of disability and all people experiencing disability have something to teach us. I think it’s not necessarily bad that most of us identify with the “wondrous” rhetoric of disability, because it can inform our realistic perception. For me, people experiencing disability are inspiring because all of them I’ve met have an undeniably strong will to live that influences my will. In my VoiceThread at the beginning of the week I mentioned my good friend and neighbor Bohdana, who is confined to a wheelchair, but has just finished law school. For example, this is a link to a video that has become popular in Eastern Europe: https://www.youtube.com/watch?v=i-S-EoAIXIw
From my training as a nurse assistant, I remember it being stressed not to “talk down” to patients. In class, Amy mentioned that because healthcare providers might be uncomfortable around people with disability, they might be more cautious. I can definitely relate to that feeling when I first started working in a long-term care facility. I made sure to focus that I was extra-gentle and reserved. I definitely had to grow into my role and by and by, learned to be more comfortable with people and caring for them. I can definitely agree with Akanksha that good/compassionate communication should be taught and exercised when relating with people experiencing disability. I also think that a lot more education is needed on disability studies and their place should be asserted in various histories, various disciplines.
We need to begin by acknowledging stigma and educating ourselves on disability studies before making such conclusions. If what society perceives as a disability exists, and the person who is considered disable feels as though they wish to improve their condition, then we shouldn’t feel the need to actively conserve disability. It is difficult to draw the line between conserving and fixing disability.
Reflecting on the past week’s group presentation on genetics, I thought about the introduction of inoculation and how it met with both positive and negative responses. Positively, inoculation was promising in that it served as a way to prevent against smallpox and other diseases. On the other hand, those who were inoculated were perhaps going against God’s will. This issue, I imagine, would be similar for people who struggle with a perceived disability. If it was God’s will for this to be part of a person’s identity, then why should it be fixed? On the other hand, if we are given the tools to improve the human condition, why not do so? Even if we do so, wouldn’t nature’s role be to conserve diversity in some way or another?
We can never eliminate disabilities of physical, mental, or spiritual health; we will always be presented with new challenges. As humans, we struggle in all aspects. And the most that we can do is educate ourselves and engage in dialogue to analyze and conquer the social issue of disability. I agree with Kristine: “Disability should be neither conserved nor fixed…it is important to do all in our power to make sure these individuals do not face hindrances in their daily lives.”To this I add that a person with a disability must first decide whether or not to take action towards his or her condition.