Re-Presenting Disability: Section Three

I particularly enjoyed this final section of Re-Presenting Disability. At first, I was confused by the editor’s decision to title this section Unsettling Practices. The stories in this section are far from unsettling; rather, they are some of the most inspiring and motivational of all the case studies because they present some way to negotiate the crisis of representation surrounding people with disabilities and museum work. Perhaps what the editors really mean is that these are all examples of museums re-evaluating and changing their practices rather than remaining “settled” in the their old ways.

I found Chapter 15 “Transforming Practice: disability perspectives and the museum,” to be a revealing look at how the decision by the National Holocaust Memorial Museum to discuss issues of disability rights led to other important changes. I found it interesting that the museum was forced, for the first time, to look deeply into issues of accessibility when they invited the activist and lawyer Harriet McBryde Johnson to speak about disability rights. People in many departments had to prepare space and staff for a diverse audience including many people with various disabilities. While this scramble to make the museum accessible may not be an ideal scenario, it is important to recognize that if this exhibit and symposium had not happened, the museum would likely still not be as physically accessible as it is today. In addition, the museum forged relationships with individuals from communities of people with disabilities who can act as advocates for continued attention to these issues.

Chapter 16, “Reciprocity, Accountability and Empowerment: emancipatory principles and practices in the museum,” carried on the theme of the importance of involving people with disabilities in the planning of museum exhibits, elements and programs. The author, Heather Hollins, frames her discussion with the ideas of emancipatory research, wherein people with disabilities are involved in the development and implementation of museum exhibits and policies. Emancipatory research is different from other forms of partnership or consultation. There is an expectation of accountability and action on the part of the museum to improve in the areas identified as problematic by the researchers, and the relationship between researcher and museum is reciprocal and mutually beneficial. I am left wondering about local museums that use contractors to carry out accessibility analysis and research. Is the museum expected to act on the recommendations of the consultants? What is a museum’s ethical responsibility in this case?

I was also pleasantly surprised to learn about the existence of a program like the Pioneers Forum, a group encouraging young people with disabilities to stand up for their rights and advocate for accessibility. Their participation in emancipatory research for the Holocust Center in England got me thinking; are there programs like this in Indianapolis, or in other cities? I couldn’t find information on any. What a great opportunity for improving the lives of these young people and making the museum more inclusive at the same time! Do you think a museum could implement and lead a program like the Pioneers Forum?

I am glad the editors chose to make “Collective Bodies: What museums do for disability studies,” by Katherine Ott the final chapter. Ott presents some ideas on how museums can truly become places of healing and social change. She makes many excellent points, but my favorite is her discussion of the power of words. In several places in this book, words have played an integral role. They can cause anger when used improperly, in the case of the Museum of Sex and the Intimate Encounters exhibit, and there is always much deliberation by museum workers when determining what words to use in an exhibit. Ott suggests that this is the inherent problem with words; they are by their nature generalizing, and disability studies eschews the general in favor of an individual person’s concept of their disability. Museums have the power to turn the general into the particular through the use of objects. An object is, imbued with the story of the individual who owned and used it. By displaying, for instance, a wheelchair and the story of the person who used it, we can focus on the importance of individual people instead of generalizing and compartmentalizing with words.

The Final Book Discussion—Live and In-Person (or perhaps on Skype)

Greetings one and all.  I hope that you’ve all been enjoying the book discussions thus far. I’m excited and impressed with all of the comments everyone has put out there so far. 

As you have no doubt noticed, we’ve come to the end of the books! It’s time for the final discussion. You are all invited—so here’s the deal,

Wednesday, November 16, 2011, 7:15 pm at The Children’s Museum of Indianapolis.  You MUST rsvp if you would like to attend in person, or if you want to try to participate on-line. 

If you plan to attend, please post your response here or call 317-274-7332 and leave a message.

Hope to see you there in some form!

Re-presenting Disability Discussion Questions: #17-19

Reading #17 is about the struggle to preserve both the physical location and the legacy of the Losheng Sanatorium in Taiwan, which was a segregated residential and medical facility for people with Leprosy, now called Hansen’s disease. People infected with leprosy were removed from society and forced to live in this and similar institutions before a successful treatment was discovered. A very heavy stigma has always been attached to leprosy, and even after patients were treated and allowed to return to their homes and families, manyb opted to continue to live at the sanatorium because they had developed a strong familial relationship and support group with other patients. Added to that is the fact that some of them had been completely isolated from society and had no way of successfully rejoining it. When the government gave notice that the sanatorium would be leveled for transit development, a grass roots campaign exploded into a major issue of saving that place and preserving the story of the people who lived there. The site was eventually designated an historic landmark, which bought some time for students to work with the Losheng patients to establish a museum honoring them. The museum incorporates the voices of the patients in delivering their history to visitors, and patients also interact on-site with people to connect their past to the history of Taiwan. At the time this book went to press, there were plans for the museum to be moved and re-organized to highlight Taiwan medical history. How do you think this change
will affect the Losheng patients’ authority as stakeholders?

News article with more background information:

http://www.taipeitimes.com/News/taiwan/archives/2011/09/18/2003513573/1

Reading #18 is about the Norwegian Museum of Deaf History and Culture. The theme of this chapter is inclusion—whom to included in exhibits as part of Deaf Culture and how to include hearing people as part of the target audience. Deaf Culture is not just centered around people who can’t hear, and hearing loss doesn’t automatically make you part of the Deaf community. The use of sign language is the connecting factor. Anyone who uses sign language to communicate can be considered part of Deaf Culture. To create a museum that is inclusive of hearing visitors, the choice was made to focus on Deaf Culture and its relationship to mainstream culture, in order to challenge prejudice, in general, as well as to spotlight controversial causes related to deafness. Should museums stick to what the author calls the ‘neutral truth’ and report historical information, as has been a topic in previous chapters, should museums take the risk of promoting social change?

Reading #19 discusses how museum professionals and disability scholars can mutually benefit from collaborative efforts to explore the nature and history of disability.
Disability scholars have much more knowledge of topics related to disability, but museums have the ‘stuff’ related to disability. In what ways can they work together to deliver their combined experience to the public via museum exhibition?

The author, Katherine Ott, is a museum professional specializing in disability and medical history. The following links refer to a past exhibition on disability, which was curated by her.
http://www.adaaccessnow.org/struggle.htm
http://americanhistory.si.edu/disabilityrights/exhibit_menu.html

Re-presenting Disability Discussion Quesrtions: #14-16

Reading #14 “Out from Under” gives us a close look at the development of an exhibit created by Disability Studies faculty and students at Ryerson University in Toronto, Canada. The exhibit was created to be part of the Abilities Arts Festival, which celebrates disability art and culture. The faculty and students all come from
backgrounds in community organizations and working with disabled people. They developed strong communication ties with disability groups throughout the planning process. Their goal from the start was to make the exhibit progressive and activist, pushing visitors to reconsider their views of disability. A key point to make is that the exhibit was developed in isolation of historians and museum professionals, and it was a huge success. Do you think that involving museum professionals would have hindered the creative efforts of Ryerson’s team, by imposing too many concerns over controversy or political correctness?

You can view a virtual recreation of the exhibit HERE.

Reading #15, “Transforming Practice” focuses on the United States Holocaust Memorial Museum and an exhibit about Nazi treatment of people with physical and mental disabilities. They were either killed or sterilized to prevent them from adding ‘defective’children to society. As part of programming to supplement this exhibit, the museum hosted a series of talks under the title INSIGHTS. Harriet McBryde Johnson, a disabled lawyer and activist, was invited to participate, and the museum made a major push to increase its accessibility in preparation for her visit. Many physical features of the museum were updated for better access, and staff also received much informative training on serving visitors with disabilities. I’m speculating that the museum would not necessarily have taken such initiative, if Johnson were not slated to be a guest for the INSIGHTS series. Using this example as ‘food for thought’, should high profile disability activists pursue
museums as venues to spotlight causes, and subsequently bring accessibility into the consciousness of more museum professionals, who have much power and authority to set high standards of accessibility?

Reading #16, “Reciprocity, Accountability, Empowerment” describes emancipatory disability research practices. People with disabilities have often been the subjects of research, but have not had the power to participate in shaping and guiding it. That power has always been in the hands of the researchers, as the true ‘experts’ on disability, but emancipatory practices push to empower disabled people as experts on their own lives and experiences. Involving disabled people in
the research process enables their questions and concerns to be addressed, not just the specific objectives of non-disabled participants who tend to fact-gather and analyze results without input from the disabled subjects of their research. In what ways can museum professionals use these emancipatory practices to increase accessibility and responsibly represent disability in museums?

The following link is a brief overview of emancipatory
disability research in use at the Museum of Science in Boston: http://informalscience.org/research/show/3084

Re-presenting Disability Discussion Questions: #11-13

Reading #11 This chapter describes a photo exhibition hosted by NYC’s Museum of Sex. Its focus was disability and sexuality, and the photographs represent disabled people ‘s views of their own sexuality. In general, the topics of sex and disability can stand alone as controversial subject matter, and together, they can work to make the public very uncomfortable. An unexpected reaction to the exhibition actually came from local disability groups that were very upset with the use of the word ‘handicapped’ in marketing materials. They were also offended by
the labels in the exhibit which identified each person’s disability, even though the people portrayed in the photos all agreed that it was important to provide that information because many of their disabilities are not apparent. Disability groups threatened a boycott of the exhibit and museum. According to the author, disability organizations were contacted during the planning stages, but communication between the museum and organizations slowed, eventually dropping off completely. The museum assumed that the organizations were not interested in being consultants. Did the disability community react too harshly, especially since the museum tried to include them in the planning process? In a situation like this, whose responsibility was it to keep the line of communication open?

This link is to the photographer’s website, and a sampling of photos used in the exhibition is available under “Intimate Encounters.” Please be advised that some images contain full male or female nudity. http://www.belindamason.com/

Reading #12 is about an exhibit highlighting the life and work of activist and cartoonist Everett Soop, who was also disabled and confined to a wheelchair. Soop was a very straightforward kind of guy, and very deliberate and direct in voicing his ideals. His quotes supplement this chapter. One in particular grabbed my attention: “Self-determination requires healing, and healing means no longer pushing unpleasant realities under the carpet.”

How does this quote relate to museum professionals’ potential to act as active agents of social change in developing new ways of viewing and perceiving disability?

Reading #13 “Face to Face” describes using portraiture to document before, during and after images of patients undergoing reconstructive facial surgery. Paintings were made during a two year project and exhibited at the National Portrait Gallery in London, and a few other regional art galleries. Facial disfigurement is not an anonymous disability, and staring is often a sensitive subject for people with disfigurements. By separating the image of disfigured individuals from the living person using the medium of oil on canvas, do you think this is an effective approach to make it acceptable to stare? Do you think that providing a comfortable context in which visitors are allowed to truly look and reflect on the differences in visual appearance serves to change their perception of disability?

You can read more about the exhibition and see some of the
paintings HERE.

Re-Presenting Disability: Section Two

I found Chapter 7, titled “Disability Reframed,” a useful case study in analyzing the success of using the social model of disability as a theoretical framework for exhibits. While I think it is essential to reframe disability in this way, I am afraid that these representations may get lost among the other, more prevalent representations of people with disabilities as either victims or heroes. When I consider the most common contexts where I see disabled people in the media, it is usually in commercials or advertisements either showing a person with disabilities “heroically” performing some act despite their disability, or in advertisements for charities that paint people with disabilities as pitiful or helpless. It is therefore understandable that many visitors’ comments framed people with disabilities in this way. As mentioned in this chapter, reframing these kinds of stereotypes is also more difficult because a medicalized or individualized understanding of disability is not viewed as harmful, and it is generally understood that no one wishes harm on people with disabilities. In your opinion, are these kinds of stereotypes harder to change than more negative ones?

For the exhibit mentioned in Chapter 7, curators and exhibit developers chose to use comment cards at the end of the exhibits to collect visitors’ reactions and opinions of their experiences. These comments helped museum staff measure if people felt their views had been changed or influenced by the exhibits. Are publicly-viewed comment cards an ideal method of recording visitor reactions? How could they be problematic? For instance, I think visitors are less likely to post negative comments or admit their opinions hadn’t changed if the cards are visible to all visitors. If the comment cards are more private and turned into a staff member at the end of the exhibit, how do you think the visitor responses would change? Are there problems with this approach as well? I also found it intriguing that the museums asked visitors to provide demographic information on the back of the card, as I have never seen that approach. If you were implementing a comment card program, would you ask for such information? If you were a visitor, would you provide it?

Chapter 11, “Revealing Moments” was an open and honest account of the challenges and triumphs of putting on an exhibit about disability and sexuality. I found the controversy surrounding the Museum of Sex’s choice to include information on the medical definitions of the participants’ disabilities to be particularly revelatory. While some disability activists thought the inclusion of this information only served to further “medicalize” perceptions of disability, many participants approved of the museum’s choice. If you brought the exhibit to your museum, would you include that information?

Elizabeth Mariko Murray and Sarah Helaine Jacobs, the authors of this chapter, mentioned how the Museum of Sex is in a unique position as a for-profit, private museum; there is a degree of freedom that other museums receiving public funds do not have, yet there is a constant struggle to make enough money to stay open. In fact, they are the only authors I have read in this book who openly admit that they must always consider the money-making potential of their exhibitions. Is having the freedom to take on more controversial issues and exhibits worth worrying about losing your job or keeping the lights on? Given that many government-supported museums are struggling as well, does it even matter?

FYI--Technical Issues

Hi all,

In preparing to post the discussion questions for this week's readings, I discovered that my last two posts have mysteriously disappeared. Of course, I didn't save the posts as Word docs (shame on me, right?), so I have to go through my notes to recreate them. I'll get those two re-posted and add this week's post in the next day or two. I apologize for the inconvenience.

Thanks!

Kris

Re-Presenting Disability: Section One

There is a lot of material for discussion in the first section of Re-Presenting Disability, and not enough time or space to devote to all of it. I will touch on just a few of the many topics presented by the case studies in section one.

The works of public art discussed in the first chapter, “Activist Practice” by Richard Sandell and Jocelyn Dodd, are very intriguing, particularly because of the highly charged debates these works stirred up among disabled activists, politicians, artists and viewers. A similar controversy has arisen right here in Indianapolis, but dealing with issues of race. A proposed statue of a freed slave by the artist Fred Wilson to be displayed on Monument Circle has drawn vocal commentary and heated discussions about the appropriateness of such an image in a public space (http://www.wishtv.com/dpp/news/local/marion_county/art-of-slave-draws-vocal-critics). Do you think the decision to display these works in public spaces is generally beneficial, or is the message obscured by the controversy? By displaying art and objects that generate debate and emotions, museums can act as forums for the healthy discussion of painful topics. By placing controversial art in public places, can we open up the discussion to a wider audience, or the entire community?

I found Chapter 4, “See No Evil” by Victoria Phiri, to be particularly interesting. What struck me was how this case study on the struggle for representation in Zambia so closely reflects the same issues disabled individuals deal with in the United States. While Phiri seems to blame Zambian beliefs relating disability to witchcraft or punishment for the lack of representation in museums, are American museums any different? She notes that the only representation of a disabled individual in the Livingstone Museum is a wood statue titled “the diviner,” showing the close association between disability and the supernatural in Zambian cultural beliefs. However, Sandell and Dodd argue that Western representations of disability are often framed the same way; is a painting like The Blind Men of Jericho as damaging and dehumanizing as “the diviner?” Phiri says that the lack of representations of disabled individuals in Zambia’s National Museums is analogous to the cultural practice of literally hiding away severely disabled individuals from society. While our country no longer believes in institutionalizing or secluding the disabled, we share Zambia’s problem of a lack of adequate representation; and if honest and accurate portrayals of disability are absent from museums and the media, are disabled people truly “seen” in our country?

While reading the case studies highlighted in the first section of Re-Presenting Disability, a question has been at the back of my mind: How does the push for rights and representation of the disabled echo similar movements among other marginalized and under-represented communities? Just lumping together individuals and calling them “the disabled” is problematic. The hearing impaired, the visually impaired, the physically disabled, individuals with developmental disabilities, learning disabilities, and mental illnesses are best served with very different and distinct forms of representation and diverse strategies for improved access. Aren’t the same challenges inherent in our attempts to be more inclusive of marginalized racial and ethnic groups? Pan-ethnic “multiculturalism” is not a substitute for understanding the particular needs of individual communities in museums, just like a desire to be inclusive of “the disabled” is not a substitute for truly equal access and representation for the diverse communities of disabled individuals.

Re-presenting Disability Discussion Questions #8-10

Reading #8, ‘To label the label?’, has left me utterly confused and irritated because I just can’t make any sense of it. I read it three times and have no idea what point the author is trying to make. Sorry, but at least I’m honest, right? If you’re reading along with this book and can explain this chapter to me, I will be eternally grateful.

Reading #9 describes the potential for museums to become places where people who have experienced trauma can initiate or continue the healing process. The example used to highlight this concept is an exhibition about a mental hospital, which like many similar institutions, has a past that is marred by patient abuse, neglect and questionable ethics. The story is told through the voice of former patients and staff members. The end result was overwhelmingly positive, in that many participants felt it was a cathartic experience, but there were also former patients and staff who refused the invitation to participate out of fear of reliving the trauma. How much of a responsibility do you think the curators have in being sensitive to those who don’t want to re-live that past?

Reading #10 is a discussion of tensions between medical historians and disability activists when struggling with finding the ‘best’ way to interpret medical related objects that can be associated with disability, such as photos of disfigurement, prosthetics and other medical devices used by people with disabilities. The biggest problem is that many believe that a strictly scientific interpretation only contributes to continued stigmatization of disability and dehumanization of people, making the disability the primary defining characteristic of the individual. But there is also the argument that ignoring the medical history is detrimental to the process of understanding the evolution of the way disability has been treated by doctors and perceived in society. Is there a ‘common ground’ that can be established to encourage more of a partnership between the medical community and disability activists that will help museum professionals interpret disability responsibly and accurately?

Re-Presenting Disability: My Introduction!

Hello! My name is Allison Cosbey, and I am a first-year Museum Studies graduate student. I am excited about being part of the Re-Presenting Disability team. I really did agonize over which book to choose, as they all seemed to have something interesting to offer. I eventually landed on Re-Presenting Disability because I have been personally troubled by representations of the disabled not just in art, but in our lives. I have always thought that the diversity of people I see around me is not reflected in the images we see in art, in television or movies, or elsewhere in our daily lives. I thought the title was particularly interesting: I like the idea of RE-presenting disability, as images of the disabled have always been around us, but they have always either painted the disabled or different person as frail and pitiful or as a “freak.” I think this is a type of representation that needs to be changed, but it is not the only one. When we talk about inclusion and representation, the discussion often centers around people of different races and ethnicities. I am looking forward to reading about this topic in a different way.

Re-presenting Disability Discussion Questions: #6 Behind the Shadow of Merrick and #7 Disability reframed

Re-presenting Disability Discussion Questions: #6 Behind the Shadow of Merrick and #7 Disability reframed: challenging visitor perceptions in the museum

Reading #6 is an essay describing a film maker's motivation and process in creating a short documentary film for the Royal London Hospital Archives and Museum. The subject of the film is Joseph Merrick, better known as 'The Elephant Man'. The film was meant to depict Merrick as he saw himself, and the filmmaker used the method of showing Merrick's experience through the lens of modern day disabled people interacting with artifacts of Merrick's life. I tracked down the video online. Please click HERE to watch it, and consider the following question: How well do you think the film reaches two very distinct audiences--disabled people and people with no disabilities?

Deaf or Hard of Hearing viewers, click HERE to read the script.

Reading #7 is a discussion of a research project designed to evaluate people's responses to nine representations of disability at various museums in England. The authors also describe the Individual Model and the Social Model of Disability. The former is based on the idea that disability belongs to the individual and is a result of a person's specific medical issues. The latter is based on the idea that disability is placed on individuals by society in the form of environmental and attitudinal barriers.

Click HERE for background information about Deafness on Martha's Vineyard in the late 19th-early 20th Centuries. Because of a very high percentage of Deaf residents, everyone used sign language. There were no communication barriers between hearing and Deaf residents. Did disability exist within that community?

Re-presenting Disability Discussion Questions: #4 'See no evil' and #5 Ghosts in the war museum

Reading #4 discusses the role of traditional Zambian beliefs and how they have shaped negative perceptions of disability. Zambians have deeply rooted ideas about the causes of disability, such as angry ancestors, evil spirits and witchcraft. The introduction of Christianity has worked to dilute some of these beliefs and has started to change public perception, but it seems that traditional beliefs continue to be more influential in the decision by museum operators to avoid interpreting disability. Religion can be a very volatile subject, so what do you think is the best way to approach interpreting disability when its causes are still so strongly attached to the supernatural?

Reading #5 focuses on the absence of war related disability in museums. We commemorate the dead, but ignore the living who have been maimed and psychologically scarred by war. The author uses the examples of genocide and war during the eras of the Holocaust in the 30s-40s, Vietnam and Cambodia in the 70s and Rwanda in the 90s. Consider the amount of time that has passed since these eras. How soon is 'too soon' for displaying exhibits of war related disability? Is it insensitive to confront survivors with graphic images of war in the very places where it occurred?

Re-presenting Disability Discussion Questions: #2 Picturing people with disabilities and #3 Agents at Angkor

Reading #2 discusses the use of Classical portraiture, which is a traditionally elite art form, to give 'social capital' to disabled persons and counteract the negative effects of past images of disability--freak show, charity marketing, and medical photographs. How affective do you think this strategy will be?

Reading #3 describes the Cambodian Landmine Museum and the efforts of its founder to bring attention to the collateral damage caused by landmines and to assist survivors. Click HERE to visit the website. Although the Museum serves its community well and also attracts tourist attention, thus increasing awareness, do you think that images of broken and impoverished landmine victims work to perpetuate the misconception that disabled persons are to be pitied and treated as charity cases?

Re-presenting Disability: Discussion Question #1 Active practice

Here are links to images of the three statues discussed in this week's scheduled reading. After learning about the controversy over these statues, what is your opinion of them? Are they helpful? Hurtful? Honest? Disrespectful?

FDR


Allison Lapper Pregnant


Churchill

Sandell and Garland-Thompson ~ Re-Presenting Disability: Activism and Agency in the Museum Reading Schedule

Sandell and Garland-Thompson ~ Re-Presenting Disability: Activism and Agency in the Museum
Reading Schedule

Week of Sept 12:
1. Active practice

Week of Sept 19:
2. Picturing people with disabilities: classical portraiture as reconstructive narrative
3. Agents at Angkor

Week of Sept 26:
4. 'See no evil'
5. Ghosts in the war museum

Week of Oct 3:
6. Behind the shadow of Merrick
7. Disability reframed: challenging visitor perceptions in the museum

Week of Oct 10:
8. To label the label? 'Learning disability' and exhibiting 'critical proximity'
9. Hurting and healing: reflections on representing experiences of mental illness in museums
10. Histories of disability and medicine: reconciling historical narratives and contemporary values

Week of Oct 17:
11. Revealing moments: representations of disability and sexuality
12. The red wheelchair in the white snowdrift
13. Face to face: representing disfigurement in a museum context

Week of Oct 24:
14. 'Out from Under': a brief history of everything
15. Transforming practice: disability perspectives and the museum
16. Reciprocity, accountability, empowerment: emancipatory principles and practices in the museum

Week of Oct 31:
17. Disability, human rights, and the public gaze: The Losheng Story Museum
18. A museum for all? The Norwegian Museum of Deaf History and Culture
19. Collective bodies: what museums do for disabilities studies