Throughout the semester, I have been interested in pursuing the disability studies perspective in medical decision making. At the beginning of the semester, I had focused my thoughts on how medical technology impacts the disability community. As the semester progressed, I became interested in topics related to how our perception of disability shapes our decisions when faced with questions regarding informed consent or physician-assisted suicide. Through exploring these topics, I developed the idea that the relationship between disability and health is largely responsible for the stigma related to disability. My understanding of both medicine and disability expanded as a result of these reflections.  

There are inherent connections between disease and disability. These connections lead many individuals to associate a lack of health with disability due to the nature of certain diseases to produce disability. However, most people in the disability community do not want to be considered ill and most people who suffer from chronic diseases do not want to be considered disabled (“Disability: Health, Well-Being, and Personal Relationships”). In considering issues of disability in relation to medicine, it is important to understand the ways in which society defines disability in the context of health.

I'm so grateful for every minute I was able to spend at CCW and for its art-studio applications of our disability theory discussions.  CCW was eye-opening for me in many ways, but most striking to me was realizing it was a space for the celebration and creativity of artists who are not typically celebrated as such outside of the studio.  (Let alone celebrated without any mention of 'despite' or 'outsider'.)

"You Don't Really Need to See This"

Review of the exhibition "The Senses: Design Beyond Vision"
at the Cooper Hewitt, Smithsonian Design Museum in NYC through Oct. 28, 2018
by Michael Kimmelman, NY Times, April 20, 2018

Last time I was in the VCAM I was checking out the current exhibition on the first floor and noticed it has some pretty interesting interactive elements. The exhibition is about melancholy in different art. The first thing I noticed was the art hung on the walls which seemed pretty standard as far as accessibility is concerned. What struck me as an interesting addition to the exhibition was the inclusion of head phones playing melancholy music as an additional form of art that fits in with the exhibition's theme. The musical element added a lot to the theme and offers another medium for people to enjoy the exhibit, expecially if they cannot enjoy the visual art due to a visual impairment.

In my final project, I aim to explore the connection between health and disability. Health and disability are often linked due to the fact that disease can often result in disability. I will begin my proposal by exploring how this association impacts medical decision making in the context of informed consent and physician-assisted suicide. In both scenarios, there is evidence that societal beliefs in regards to disability often negatively impact the way people view disability or individuals with disability. For example, people often view a disabled life as a life that is not worth living. Thus, when individuals are faced with a decision regarding living with disability, people often opt to eliminate disability due to this preconceived notion. 

The CCW partnership enabled us to apply the concepts of disability theory in the classroom. The opportunity allowed us to learn more about a unique population of artists and gave them the opportunity to get to know other members of the community. I think in the future it would be great for students to work with artist on an artistic project over the course of the semester. I think this would give artists and students an additional way of communicating with one another. I really enjoyed the partnership especially the unstructured sessions where we were able to take the lead in working with the artist to establish goals to help design our visits. However, it was helpful in the beginning to have structured sessions until we got to know the artist better.

The Metropolitan Museum of Art has been under a lot of scrutiny lately for eliminating their Pay-As-You-Wish policy for folks visiting from outside NYC - it's really inaccessible! I just saw this post about a new initiative that the Met is undertaking, highlighting their first ASL tour via Facebook live. This is a great way to see the collection without having to pay to see it in person (or travel to New York), and is accessible to deaf and hard-of-hearing folks! Yay!

https://hyperallergic.com/436294/metropolitan-museum-accessibility-asl-facebook-live/

In reading Carmen Papalia's essay on museum access, I was thinking a lot about the effectiveness of verbal discriptions of visual art and art spaces. Papalia mentioned that the way he experiences a museum and understands a piece of artwork depends heavily on the person he is with. In any situation, the things that stand out to a person as particularly interesting or important are not necessarily the same as the things that will stand out to the next person. Furthermore, a piece of art will likely evoke different thoughts, memories, or emotions for differnt people. This may make it difficult for a person describing a piece to be completely non-biased in their description without staying true to the way that the art makes them feel or think about.

Chris Kaposy, "The Ethical Case for Having a Baby with Down Syndrome"
NY Times, April 16, 2018