NBS seminar - "broken brains"?

After last week’s discussion, I started to think about what I consider the definition of disability how we were using it in class. To me, a disorder is not something that is intrinsically“less good” but instead something that hampers someone’s ability to participate in a society as a whole. While we were saying that we see people with autism as“less good”, we label it a disorder because they are unable to participate in the dominant culture, not because their ways of communicating are less good. In that sense, the man in the story “in the land of the blind, the one eyed man is king” was suffering from a disability in terms of what society he was in. He could have adapted to their way of life and been able to function in the community even if he still had his eyes. In that community however as it was, having eyes was a disability since he was not able to participate and (maybe?) to do so successfully he had to lose eyes.

I think the line that needs to be drawn between a difference and a disability is when the person, for physical or social reasons, is no longer able to take care of themselves. Severely autistic people, for example, are usually unable to take care of their own daily needs.  Perhaps the autism spectrum needs to be re-evaluated to separate those who simply participate in society with a different view point and different way from those who seem completely isolated from society.

Someone made a comment on Tuesday that maybe what is needed for everyone to function best is for us all to be in our own societies. While I’m not sure if the person truly meant this, if this were to happen there would be no culture and no society, just isolated individuals. We need culture to survive and all are making some adaptations to participate to our utmost ability in the one that we live in.

I also believe that the dominant culture has a responsibility to not ‘correct’ someone with autism (or other disorders) but to let them reach their highest ability of functioning in the society while adapting to their uniqueness and needs.  Many children with autism are now given typewriters, or picture books where they can point to what they need or want, in an attempt to communicate with the dominant culture. While it might be best for us all to just understand them as they are, as of now we are not yet there and these are huge steps being made by the dominant culture to adapt for the minority.

I feel like people were arguing that we aren’t making adaptations for people with autism, but I see  such attempts to give them the most opportunities to reach their highest ‘functioning’ within the society. Also, many people who work with autistic individuals are aware of things that bother them (such as being touched) and avoid doing so. This is an example of an adaptation made by the ‘dominants’ to the minority.

Furthermore, in terms of schools and having special classrooms to help ‘disordered children to reach baseline’ (in which I think it is more of an attempt to have everyone reach their highest potential), we must remember that gifted children are also given extra support and I see this as an example of this attempt. While the main classroom may work for the baseline students, extra classes are needed for those either above or below baseline not to make them baseline, but to have them reach their potential.

There are a few things from the last class that really struck me. In terms of a disability as being seen by the dominant forces as “less good,” I do think that our culture is reaching a point where autism can be seen as a difference that is good in different ways. That’s not to say that it’s a shared belief by most, but just that we’re at a point where our culture is ready for it thanks to claims makers that initiate the identification of our current thoughts as problematic. The one example that kept coming to mind was a girl on the most recent season of America’s Next Top Model. Heather has a mild form of autism and because of the way that she uses her eyes (she doesn’t shy away from direct, intense eye contact) she produced some really amazing photographs with intensity that the other girls just couldn’t pull off. She made it really far in the competition because of her unique abilities as a person with autism and she’s the new face for the “disease.”

At the same time, she didn’t win the competition because she couldn’t perform in other areas that are necessary to be a “top model”; she was unable to read lines for commercials or interact well with designers in interviews, and she also didn’t really have to focus necessary for runway. I think she’s a good example of how you can be different with autism and be better at some things and a designer would be wise to book her for photographs and book someone else for runway. The combination of autistic and non-autistic abilities is greater than either can be alone.

Heather’s autism also brings up the idea of treatment with medicine. She would not have been able to go as far as she did in the competition (and as far as she will go in the field of modeling) without some form of intervention aimed at making her fit into our culture better. I do think that we shouldn’t medicate someone just to make them who we want to be, but I think it’s also important to recognize that it takes a lot of time to change a culture, and that an individual will likely have a better experience within the culture if they’re able to adapt somewhat. I completely agree with Stephanie that there’s nothing wrong with a two step approach of working to change the minds of people about how they think about those with a “disability” but in the mean time helping those with the “disabilities” to function well within a rigid society.

The only other thing that I want to say about whether or not to treat someone is that I think that questions of the physical and mental health and safety of an individual and the others around them should be the priority. I have no problem with letting an adult with bipolar disorder decide whether or not to medicate as long as they’re not a risk to themselves or others. Britney Spears may be a successful artist because of her mental state, but that doesn’t mean that I think her children should be subjected to an unstable environment. If she wants to be a mother she needs to choose the treatment options that will make her a stable mother. And we should help people to feel that their best option isn’t killing themselves, because then their “differences” can’t contribute anything to our society. Suicide is not a Darwinian advantage, it’s just a loss.

First off, I'd like to just like apologize for my little "Bi-Polar Freak Out" in the middle of class. My family just experienced my younger sister's first manic episode not too long ago, and we've been living with bi-polar relatives our entire lives. Listening to my sister inform me that she has a profound understanding of our family’s greater purpose because she spoke to my recently demised grandmother and because there are four people in our immeduiate family, which means there are three recipients, which totals seven the holy number, which is all so clear to her now, and that she is divine and will not die, and it’s okay because I understand her words for two hours skewed my perspective and is apparently a sufficiently fresh wound that it can still send me in to a blind, unproductive tizzy.

Which brings me to the thrust of what I'd like my short, potentially counter-productive, point to concern itself with: these "broken brains,' regardless of how they're defined or handled, do not exist in a vacuum. There are people who love them, people who may be more “able” or less “ill” than they are watching them flounder. Fixing these brains doesn’t require an appeal to the evolutionary greater good or society at large, but simply a recognition of a family unit around them that suffers on account of another’s disorder. True, a bi-polar patient feels incredibly lucid during his/her manias, as though s/he really sees and understands, but a quick glance at his/her credit card bill or the state of their interpersonal relationships or their body weight may indicate that the individual isn’t capable of understanding consequences at all. To preserve an individual in this disordered state because they “want” their disorder is incredibly selfish and disregards the other potential victims of the disorder. Preserving the well being of a loved one for the sake of the family may read as selfish, especially when the disease is merely a construct of society, but the pain and suffering of those around the person should not be ignored either.

No one would in their right mind would allow a drunk man to consent to a sex change operation, so how can we allow people whose minds, whose reasoning, whose perception are clearly dysfunctional decide that they shouldn’t be treated? How selfish is it to allow an individual to exist in a pathological state in the hopes that they may turn out to be a great artist, or writer or thinker for the benefit of society? And if, hypothetically, we set about reconstructing our culture such that treatment of bi-polar disorder and autism becomes obsolete in a manner analogous to that which we are presumably attempting with homosexuality, what of those already inculcated with the views and values of the before? Are their sadnesses and experiences really so inconsequential? In closing I realize that this viewpoint is not popular and probably reads as very myopic and unenlightened. But listening to my sister’s broken and frightened voice when she asks me if she’s crazy and the subsequent duress I experienced gave me a profound sympathy for the deeply Catholic father of a homosexual son, the mother whose autistic baby won’t smile at her and the brother of a bi-polar patient who has been called to identify the body.

(Is the suffering of one party necessarily less than that of other? How did we come to recognize the pain of the gay child over the parent and inversely the mother over the autistic baby?)

Disability, as I have defined it, is a condition that has been deemed as "not normal" in our everyday society. Having a disability means that you may not be able to function "normally" or participate in even the simplest of routine activities, such as brushing your own teeth or feeding yourself without any help. I use the word "normal" in quotation marks and very loosely because I still question to myself and to others today, "what is normal?" With this question in mind, we begin to think about disability in our culture. Should we see disability and help those who we have labeled as disabled to become more acceptable in society, or should we instead change our ways/culture and not see disability as just that, a disability? Well, I say a little bit of both.

We should notice disability in our society, but not so much as a disability in the context that we use it today; instead, we should see it more as a difference. Those with disabilities such as autism, multiple personality syndrome, or schizophrenia will clearly be noticed in society and can perhaps be a danger to themselves and others. So yes, in these cases, we need to recognize these differences and lend our helping hands when needed. And let us be realistic as well; could you imagine a society without disability? How would the world change? As I mentioned in class last Tuesday, us scientists and researchers rely on the world’s disabilities to give us jobs! Are we not trying to cure cancer, find the gene for autism, and make better medicines for mentally ill patients? Face it, we need disability; for physicians and scientists, it brings purpose.

On the other hand it would be nice if culture as we know it today could change our views of disability. My goodness, the way things are going these days, everything is going to be a disability someday! I have IBS (irritable bowel syndrome) so does that make me disabled? My brother has frequent panic attacks; is he also disabled? Both of us take medication on occasion for our symptoms, but we both function well in society. This leads me to another question; if the answer is "no" to my above questions, than how do we label the severity of a condition and label it as a disability? Do we instead have degrees of disability that can be mapped on the disability spectrum? And while we are thinking about all of this, we must then ask yet another question; aren’t we all disabled? It seems as though everyone has at least one problem that can be medically treated/fixed, whether its something more serious like schizophrenia or something less serious like frequent headaches.

Thinking about disability in today’s culture is tedious! There is so much to think about and so much to question; unfortunately, we do not have all the answers.

Jayme E. Hopkins, '08

After our discussion last week, it's very interesting to me to think about how hesitant I am to use the work "disabled" when describing a person; I'd rather think of "difference". And while I can't help but favor the use of difference over disability, in reality disability is difference (while maybe to an extreme). My hesitation is rooted in this negative connotation that seems to go with disability, that not being able makes one a lesser person. This makes me uneasy, largely because I think that identifying disability, as Stephanie said, can be very helpful. If we seemed to agree on anything during class it's that we aren't going to see a culture that is 100% inclusive to everyone all of the time. So, classifying disability as extreme difference can be helpful if not necessary to simply exist in any culture. The issue as I see it is the stigma that surrounds it.

It was brought up in class that perhaps we all just have our own different talents - those who can't see, for example, can hear exceptionally well. While I think that it is certainly true that we have our own specialties, I think it's silly to assume the magnitude of these strengths/weaknesses are the same. I can think of many people who seem to just be exceptionally skilled at most things they pursue, and others, not even those the DSM considers disabled, seem to lag behind in most areas. This is where it gets tricky, and I think some of this difference is attributable to genes and development (nature and nurture, if you will). Perhaps it is society that places preferences on some traits (intelligence/physical beauty) over others (empathy, ...) but I think that it would be great to first of all accept disability. If we (as a culture) can be okay with the fact that yes, we all have our strengths but some of us have weaknesses in some area that benefit from assistance... I guess I'm saying that by making our culture inclusive of disability we won't so much have to change society but instead the mindset that accompanies it. While any one society can't be totally inclusive, I think we should strive for a society that everyone benefits from. That starts with taking the stigma off of disability. (obviously also easier said than done)

Looking over my post it seems jumbled, it was much clearer in my head. I look forward to sorting through it with you all!

I was really surprised by the discussion we had in class about disability and culture, and at how many people seemed to agree that the responsibility lies with individuals and not the culture to correct or accommodate any deviations from the cultural norm. I definitely think the society as a whole should take on the responsibility for ensuring all of its members are equally valued within a culture, regardless of the differences among individuals. I agree that in extreme cases, such as individuals that engage in criminal or sexually deviant behavior, it is the individual that needs to change and not the culture, but I think that we can all agree that the term “disabled” as it is currently used applies to far more people than those that fit in either of these two categories.

I feel like I voiced my opinion a lot on this subject in class though, so I want to move on to the issue of the current conception of mental disorders, because I think it’s a really interesting one. I really agree with what some people have already said about the DSM model of mental disorders being fundamentally flawed. One of the main problems with it in my view is that for any particular disorder, a person can fit the diagnosis by displaying any combination of a varied assortment of symptoms. This means that two people who supposedly have the same disorder can look completely different from one another in terms of their behavior. Additionally, giving a name to a group of symptoms tell us nothing at all about the origins of these symptoms. For this reason, the diagnosis itself is not all that useful in determining a possible means of treatment for the patient. Neuroscientists like to think that we can match underlying neurological causes to particular mental disorders (for example, depression being caused by a deficit of serotonin). However, if this is the case, then why are there so many different types of antidepressants, some of which work for some patients and others not at all? It seems to me that labeling all people who exhibit the symptoms listed in the DSM under Major Depressive disorder as depressed does not really do much to help these people. I understand that most of these problems are due to limitations of our knowledge, but I think as a society we need to be careful about pretending we know more than we actually do. Until we know what actually causes the differences in behavior that are listed in the DSM as “disordered,” we as a society need to be more careful how we talk about, value, and treat these differences. I think in many cases it can do more harm than good to label someone as “disordered” (or, similarly,  “disabled”), especially in situations where neither the society nor the individual is equipped to do anything to remedy or accommodate the “disorder.”

Many people have been bringing up the idea of difference and whether or not we should (or can) make the kinds of interventions we have talked about in class and here in the forum. Stephanie metioned her belief that a child with a speech/language disorder should be helped to communicate so that they can thrive in this community. However this made me stop and think: how much is our desire to provide this help based on helping the child integrate into the community and how much is to help the community? It is very hard on a teacher to communicate with a child who is hard of hearing or speaks another language, and her job would be made vastly easier if all of her students could communicate in the same way as each other and as she does.

Professor Grobstein brought up the idea that teachers and schools should adapt to students who learn in different ways and that society should shift as much as possible to incorporate those who have a "disability" or a "difference." However, I still wonder to what extent that is possible. For example, if a hearing couple has a deaf child, one would anticipate that they would learn sign language to commuicate with their child. Perhaps the child's siblings would as well, and maybe even their grandparents. But as the connections get weaker, it is hard to know what else would happen. What about the mother's best friend, or the child's great-aunt, or his third cousin. Should we say that everyone should learn sign language just in case?

Well ok, so now everyone knows sign language, but a child is now born deaf and blind, and so all of the rules change again. There are millions of conditions and "differences" that would need to be adjusted for in order for society to be accessible to everyone.

So let's get rid of difference. Has anyone read The Giver? In this culture, everything has shifted to "sameness" and there is no color, no difference. Everyone wears the same clothes as their yearmates, everyone is assigned a job, a spouse, and even children so that there are no "poor choices" being made, and anything that would mess this up (such as identical twins) is eliminated by "being released," or killed, essentially, without being brought into the community. Additionally, there are strict rules that try to prevent any kind of embarassment or acknowledgement of any difference that still remains, in order to reduce any sense of someone being "better" or "more able" than another.

Anyways, this is a vision of a society that seems in many ways to embody the conditions of total acceptance we have been talking about. However difference has reduced, and instead of celebrating (or discriminating against) difference, it is totally ignored. Is this the only viable alternative to the way our society is? Or is it somehow actually possible to build the kind of world that Professor Grobstein envisions.

Another little thought--is it possible for it to be in a nationwide (or even global) community? The Giver takes place in a small town--are smaller "cultures" easier to control? Just a thought...

Disability as a label is controversial topic, as evidenced by our class discussion last week. However, I personally feel that these labels can sometimes (not always) be beneficial. I think their benefits outweigh their negatives. I agree with Emily when she wrote, "Brains that cannot function by themselves within a culture (which consists of more than one person) and are at risk for lower chance of survival should be labeled "disabled" (or "different", labels don't matter to me as long as action takes place) so that the rest of the community knows that they must take part in helping this individual survive." I also believe that sometimes by giving people a label of disability, other individuals in the community pay special attention to that individual and attempt to help that individual in beneficial ways.

One instance of this beneficial labeling that I have witnessed is in a special speech & language enrichment program I work in with preschools who have speech & language disorders. By labeling these children with these disorders, they are now recognized and eligible for the help they are currently receiving in this special classroom. In this classroom, we tailor the curriculum and activities to improve their speech & language skills. If I were a child with a speech disorder, personally, I would want as much as help as possible to help me thrive in the community and culture where I live. And in our society, speech & language play an integral part of daily life. I feel that not helping a child with their speech & language disorder and letting them carry on life in our world would be letting the child suffer, which I think would be unjust because currently have the tools and ability to help these children. If someone truly did not want to receive any help, then I do not think we should force them to get help, especially because they are not harming others with their choice not to get help. However, when a child is so young (3 and 4 years old) they cannot make that decision, and it is up to their parents to decide in their best interest. If I were a parent, I would most certainly decide to help my child in any way possible.

In class people mentioned, "changing our culture" so that speech & language disorders are no longer a label, disability, or disorder. I do believe cultures can change, but I believe this change will occur more slowly than the time it takes for a child to improve their speech & language skills with speech therapy. Therefore, maybe in the future we will not need the term speech & language disordered or disabled, however, right now, I believe these labels are necessary to provide certain individuals with the help they need to function and succeed in our society today.

I look forward to hearing everyone else's comments. See you in class on Tuesday!

As I was the person in class who kept striving for the "answer" to this issue of the 'broken brain' in society, I wanted to share what I came up with after class. I think what we really discovered is that there probably isn't one right answer (somewhat expected, but I think the process of looking for one sparks interesting debate), but that there are some things that need to change about our society today. I think philosophically we all agree that it would be nice to live in a culture that is completely accepting and open to others-- but again, this can create a problem in itself (take pedophilia-- should we be open and accepting? I think the issue of hurt, either to ones self or another comes in here).

I do however, think the point mentioned above is valuable: " that we all potentially have something to contribute to as well as something to gain from everyone else. Difference, in these terms, is not "disability" but the potential for mutual empowerment, for gaining things by interaction with others that one might not be capable of alone." We are in fact dependent on society and culture, and I think what really came out of the discussion was that we should take what we can from culture and discard the things we do not like (ex. the medical model of disability and overprescription/treatment).

How this actually would play out is hard to say, as I still believe that there will always be some sort of majority that imposes their culture on others and some sort of marginalized minority. I know that we have these grand ideals for a society in the future-- and as was brought up in class, it is possible for the norms to change and the groups in power to recognize unfair treatment. But the realist in me doesnt see that society could ever completely give up this power structure, I cant picture what such a culture would look like. This utopian ideal would be great, with no one creating a "baseline" and everyone accepting that some are good at some things and others are good at others, but I just don't see exactly how this would come about.

 Looking forward to hearing everyone else's thoughts.

I mentioned in my post last week that I'm really interested in how the topics we discuss pertain to issues of education, so I'd like to take this opportunity to pose some questions about how "disabilities" are handled in schools. While I realize that people generally disagreed on how to define a "disability," it seemed that the some of the class was comfortable with the idea of a disability as a difference that a person shows in comparison to other people from their culture, and that is debilitating in some aspect of their life. For the sake of this post, I'll use that as my definition of a disability. The first example that comes to mind that must be handled in educational settings is an attention disorder.

Schools consider this a disability because it impairs a student's ability to learn in a classroom (it would also qualify as a disability with the definition I gave above). Thus, students with attention disorders are frequently placed in "Special Education" classes once/a few times a day that provide them with more one-on-one guidance. But if a student begins taking stimulant medication, they may be able to focus better in their mainstream classroom.

Since the attention disorder is no longer creating a debilitating problem, technically this renders the student no longer disabled. But, in school settings, these students are still treated as disabled, and are usually kept in their special ed classrooms. This seems pretty illogical to me, and I was wondering what you guys thought. What if these students were to be removed from special ed, since medication meant they no longer needed it, and had to spend all of their time in mainstream classrooms? Would this be unfair to the student? Or, would keeping the student in special ed be unfair to the other mainstreamed students because they wouldn't get the additional attention and guidance? Going a little further back, does medicating someone so that they perform at a "baseline/standardized" level (whatever that means) essentially remove the disability, or are they still somehow inherently disabled?

A topic that came to mind when I thought of fixing brains was early diagnosis. Though I do not know too much about research on this topic, from experience I know that anything is easier to learn or get accustomed to when we are younger.  In other words, the brain is more plastic and easier to be “fixed” when we are younger.  I think this is one reason why early diagnosis is stressed so much these days for children with autism.  If we can diagnose autism sooner, we can “fix” their brains better.  Going back to the example that I brought up in class, I truly felt that it was important for me to help him learn (or perhaps to “fix” his brain) that it is inappropriate to touch people all over their bodies , when he was younger than when he is a grown up man.  When he was five, it was easy to say, “Look, that girl didn’t like it when you put your hands up her T-shirt, can you say sorry?” and children can make up even after such an incident.  On the other hand, if he still continued such behavior as a 25 year old man, he would probably become ostracized by the society.  While I agree that the culture can change to be more accepting of differences, people also have the right to have different beliefs.  For people with different ideas to live together, they must compensate for and work to understand their differences, and these efforts must occur on both sides.  When I was working with this boy, we tried hard to teach him that he could hold people’s hands if he did so gently and if he asked first, but that touching people’s butt in the classroom was not allowed.  At the same time, we talked to the girls in the class about how he likes to hold their hand, but that if he touches them in places that make them uncomfortable, they can and should tell him in words that he can understand instead of running away or trying to bear it because he has “a disorder”.

Just to clarify though, I did not mean to say that Japanese people will feel offended about the idea of shaking hands.  I just brought up the fact that we do not even shake hands to illustrate how much touching is an unnatural thing to do in the Japanese culture (which I guess may not have been clear, given Emily’s post).  Also, the touching behavior that this boy presented was extreme and would probably make anybody uncomfortable, but I wanted to say that it would be especially inappropriate in a culture like Japan. 

One reason I brought up this example was because there seemed to be several comments on the ideas of superiority and adaptability and how that relates to culture and disability, and I wanted to bring up that there are some aspects of culture that develop for neither of these reasons.  In Japan, do we decide not to hug , kiss or shake hands when we greet people like one might do in western countries because we think that not doing so is a more superior or a more adaptive way to survive in our country?  Of course not.  If asked why we don’t, I think all we can say is that we don’t because that is our culture, not because it is better to do so.  To answer Emily’s question about what culture is, I would say that to me, these common beliefs or customs that develop for reasons that have nothing to do with adaptability or survival is what culture is really about.

I definitely agree with Emily that “a culture must consist of more than one individual”, which is why cultural beliefs can be so distinguished from personal beliefs.  For instance, today when I am at Bryn Mawr, I feel that it is very natural to hug my friends because my friends and I share the Bryn Mawr culture.  Yet, I could not possibly imagine hugging my own father and I know I would feel extremely uncomfortable if somebody forced me to do so, because we share the Japanese culture.  I find it intriguing that the brain can accept one thing when in one culture and but not when in another culture.