Times-a-Changing

An Anthropologist on Mars: Seven Paradoxical Tales, a book by then practicing physician and author Oliver Sacks, has been an interesting read. Sacks examines the lives of seven fascinating, extremely talented, and creative individuals living with neurological disorders. The book begins with the story of Jonathan I., a painter who lost his ability to perceive colors after a tragic accident and ends with the story of Temple Grandin, a scientist, professor, and entrepreneur living with autism. Sacks takes it upon himself to visit each of these individuals to essentially ‘observe them in their natural habitat,’ almost as though they are subjects of a scientific study rather than human beings. I found the style and language he uses when speaking about the people he is observing to be the most bothersome about his approach.

Because this book was first published in 1995, some of the words he uses are terms, such as ‘retarded,’ that are unacceptable today. Beyond that, I find that Sacks’ tone and style is filled with condescension when he attempts to explain his interactions with the people he is interviewing. For example, Sacks is surprised by the abilities of the people he observes, almost as if he goes into the interaction with a bias that the person is a distant entity incapable of performing normal functions. In this way, his approach reflects his background as a physician, as it is very clinical and diagnostic in nature. I find that with this book, he is trying to move away from the medical examination tactic, toward a more progressive approach where one seeks to relate on a human level. However, he is only somewhat successful in achieving this goal.

Sacks generally seems to care about the seven individuals he is interviewing, but it comes across as pity rather than empathy. What Sacks does is separate the individual and the disability, failing to see how the disabilities somewhat inhibit their personalities. A better approach would be to focus on the person as a whole and not on what is wrong with them. In other words, focus on the abilities not the disabilities because doing the latter is limiting. At the time, Sacks’ book would have been considered revolutionary; today there are many organizations and institutions that continue to revolutionize how we think about disabilities.

Art Beyond Sight (ABS) is a model organization that “is dedicated to making the visual arts play a vital role in the lives of people who are blind and visually impaired.” [1] What they do is provide resources and materials to museum professionals, schools, community groups and art enthusiast on how to create greater accessibility, ability and diversity at cultural institutions. On the topic of institutional thinking on disability and ability, ABS advises that accessibility should not only be for the general public of museum visitors, rather for everyone that enters the door. This includes employees, board of directors, volunteers, artists, funders etc. There are many more resources that one will find helpful on the organization’s website,http://ww.artbeyondsight.org. Increasingly today, museums have been rethinking accessibility in their institution and how they approach ability. What are some examples you know of?

 

 

[1] Art Beyond Sight, “Why Create Access to the Arts?” Art Beyond Sight, http://www.artbeyondsight.org/handbook/dat-access-to-arts.shtml#institutional

18 thoughts on “Times-a-Changing

  1. Araya I actually thought the same thing in regards to the way that Sacks described the people and their respective disabilities. As you note this book was first published over fifty years ago but it makes me wonder how much has changed since? I would like to think that attitudes towards mental disabilities have changed but it has only been ten years since the Black Eyed Peas released “Lets get Retarded” (More well known for the edited version of “Lets get it Started.”) A quick YouTube search for “retarded”sadly proves that we have a long way to go as a society.

    1. I’m glad you asked that question Michelle. I think part of the problem of how psychologists treat individuals with neurological disabilities is the field’s emphasis on category criteria. Last year the American Psychiatric Association published the DSM-V (Diagnostic and Statistical Manual of Mental Disorders), which is the official handbook for classifying mental disorders in the U.S. The previous DSM (to be fair I have not read enough about the DSM-V) had a list of criterion that needed to be observed in a patient for each particular diagnosis to be given. Many of the disorders required that symptoms cause patients “clinically significant distress or impairment in social, occupational, or other important areas of functioning.” The DSM-V has eliminated the requirement that certain disorders require patients to be distressed by their symptoms, but the inclusion of this qualifier places the emphasis on the disorder as something “bad” and not normal.

      If anyone is interested in how the DSM-V classifies autism spectrum disorders: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

      1. This newest version of the DSM is the 5th version published, and it takes forever and a day to put each new one out (by the time one comes out, it soon becomes obsolete and they start working on the next one). Though each version has been criticized, it is good to know that they eliminated that requirement you talked about, Keith. Though the DSM can be helpful for some people in making sense of symptoms, and for use with prescribing medications and getting medication covered by health insurance, I wonder if we will someday get to the point where it is not needed– where everyone will truly be appreciated for their differences.

  2. I think you bring up a great point, Araya, when you write “What Sacks does is separate the individual and the disability, failing to see how the disabilities somewhat inhibit their personalities.” I think it is important that we recognize that differences can shape who we are, but that this is not necessarily a negative thing. I also think the fact that we are all so sensitive to Sack’s language and approach mean that his book probably has made us all a little more aware, and even more progress has been made since its publishing. Although, as Michelle aptly points out, there is still much work to be done.

  3. I wanted to respond to this line from your blog post: Sacks is surprised by the abilities of the people he observes, almost as if he goes into the interaction with a bias that the person is a distant entity incapable of performing normal functions.” The tone he takes also makes me question whether his opinion on disability changes as a whole. For example, when he is surprised at an individual’s ability to perform every day tasks does it change his perception of living with a disability or does he rationalize that the person he is studying is an elite example of people with this form of disability? Like, so close to “normal” that everyone should aspire to be them?

  4. This reminded me of the Studio Museum in Harlem and its Arts & Minds program. Essentially the program focuses on individuals with Alzheimer’s and other forms of dementia and their caregivers. The program engages them through an art workshop where they create their own works of art. It is an interesting way of rethinking accessibility.

    1. I love learning about that program at the Studio Museum. Until that point, I had never seen Alzheimer’s as a disability or thought about how museums could provide programming for care givers and those they care for.

      1. I was thinking about that when I was going through the Art Beyond Sight. My uncle was recently diagnosed with Alzheimer’s. As my loved ones have grown older, they have faced limited mobility, vision, and hearing as wells as memory loss among other things. A disability is not something that you are necessarily born with. But I liked that this program included caregivers. While this work is rewarding, it can also be challenging.

  5. This reminded me of the campaign against using the term “retarded” as an insult. If you go to http://www.r-word.org, you can make pledge and tweet about it. Their aim is to get people to stop saying the r-word and get them to think about the language they are using and how it offends and excludes people.

  6. Thanks for your thoughtful post, Araya. I felt the same way when reading, particularly the essay about Temple Grandin. I think this book is a great example of how we word and say things means so much. In Applied Education, we listened to several museum professionals at MoMA speak about their programs for autistic audiences and also the teachers in Cooperstown schools who worked with students with autism. It was really interesting to hear the language used when speaking about the programs and participants. Being sensitive to these things is an easy change in everyday life and possibly the way to start when changing perceptions.

  7. I was also really surprised at the tone of Sacks’s book. The more I read though the more I wondered if what he was really reacting to was how varied the human experience is, how different people are, and how difficult it is for people who are considered outside the norm are able to achieve great success while having to work harder than the “average” person.

    1. I have a family member who had a similar experience while being diagnosed with a developmental disorder as an adult. The approach was somewhat cold, as if the psychiatrist had made the diagnosis the moment she walked in the door and treated her differently. What was worse was when the diagnosis was confirmed, the attitude didn’t change. With Sacks, however, his perspective comes from someone who has spent years studying the human brain, and I guess we would consider him one of the smartest people in society for it. Perhaps he didn’t write with an attitude towards these patients, but has that kind of distancing look at all people. It’s in the job description.

      After 20 years, though, would he use the same words today? I should hope not.

  8. This spring, I worked with the NYSHA exhibitions department and helped with the installation of many exhibits, including the new A.F. Tait Adirondack scenes show. While in the gallery one day, I had an opportunity to discuss arranging objects in a certain case with exhibit designers and curators. I was pleasantly surprised to hear that the designers and curators considered a docent, who uses a wheelchair, while arranging the display. Would he be able to see certain objects–and discuss them with visitors–if they were displayed a certain way? The docent and I work together on Saturdays at the Fenimore and (while at the front desk working with admissions) I’ve received comments from guests praising his friendly personality and expertise about the exhibits. So, to return to my experience with the exhibition department, it was great to hear NYSHA staff applying Art Beyond Sight’s approach–everyone who enters (not just visits) the museum must be considered–to the museum experience in the Fenimore’s galleries.

    1. This makes me wonder if museums ever dissuade people from volunteering at them without realizing it. We consider sometimes consider adapting to guests beyond ADA requirements, but I don’t know of any museum that tries to accommodate handicapped staff or volunteers unless they get someone on board who is disabled in some way. Then they’ll just adapt enough for that one individual. This places all the effort to reach out and adapt on the disabled people who want to work in museums. Some probably don’t want to put out that much effort, so they just don’t apply or volunteer like they otherwise might have.

  9. I’ve talked about this initiative before, so forgive me for sounding like a broken record. But the Please Touch Museum in Philadelphia has started a “Play Without Boundaries” initiative. You can read more about it on their website (http://www.pleasetouchmuseum.org/visit/accessibility/) or on the NPR article about it (http://www.npr.org/blogs/health/2013/06/18/193092510/how-to-make-museums-more-inviting-for-kids-with-autism). They have begun a training initiative for their staff that allows them to better help kids with autism- they now know how to get on a kid’s level, talk to her or him about the museum, and to use a VTS approach that is combined with awareness training. For example, the staff at the museum now know to wait a moment after asking something like, “what else can we find?” so that child has a minute to explore.

    If there’s anything to improve, it would be better training in the spectrum that is autism. However, the Play Without Boundaries Initiative seems to be highly successful.

    (Also, NPR, getting lost in a museum is not JUST a childhood pastime, ok?!)

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