Progress

Editorial from Volume 10, Issue 3,4 by Megan A. Conway, PhD, RDS Editor-in-Chief

Image of grinning man in Aloha shirt pointing to data chart while volcano explodes in the background.

I was recently asked to write a forward to a book about the portrayal of disability in literature. When I asked what the author would like me to highlight, he suggested something about progress that has been made and progress that has yet to come about attitudes towards people with disabilities. Progress. We are always striving forward towards progress, measuring our progress and the progress we have yet to achieve. Always talking about the way it used to be and always hoping for something better for the future.

Image of empty bed in State Hospital labeled "The Lives They Left Behind
Suitcases from a State Hospital Attic"

In a recent class discussion for my Introduction to Disability and Diversity course, we talked about the institutionalization of people with disabilities. The students had been asked to view a video called "When the Moon Comes Up" by Norman Kunc, who talks about how his parents made the choice to raise him at home rather than have him institutionalized as the doctors suggested. The film shows Kunc with his wife and children, on the job, sailing his sailboat, and then transitions to photos from the 1960s of inmates at a residential institution for people with developmental disabilities accompanied by a haunting lyric, "When the moon comes up, it shines on them too, cut them and they bleed..." The film ends with Kunc saying, "It is sobering to realize how much the course of a life can be altered by a single decision."

"That was a really powerful video we watched," commented one of my students, "I'm so glad we don't have institutions like that anymore. It's so good that people with disabilities can now receive services instead of being stuck in a place like that." And so I had to explain that no indeed, there were still institutions where people with disabilities were stuck. Maybe, at least in the United States, they are not quite like they used to be. You don't see images of naked starving people covered in feces wandering the halls like the images that we saw in the film, but there are still people who could easily tell you how other people's misperceptions and power has adversely affected their lives. Can we pat ourselves for making progress in this area? Not really.

Photo of protesters crawling up the Capitol steps

But then I read the article in this issue of RDS that compares the experiences of visually impaired people in Peru and Jordan, an article that celebrates the progress that these two countries have made in access for people with disabilities, but also highlights the inequities that still exist, especially when compared to my own experiences as a visually impaired person in the United States. As I sit here typing on my new computer with the latest enlargement software, listening to the tap of the keys with my spiffy Bluetooth-enabled, state-of-the art hearing aids, pondering life as a college faculty member, I am reminded of what progress can do. Progress is possible, and progress is something to aim for.

As we celebrate and conclude our tenth volume of RDS, we also conclude the end of our print edition. We have been proud to be one of the only disability studies journals still offering a print edition, but progress, it seems, has caught up with us. Onward into the exciting world of web-based products and multimedia possibilities. May we look back ten years from now and see where we made progress too!

An Interview with Ann Millett-Gallant

Ann Millet-Gallant is one of the guest editors for the forum section of the current issue of the Review of Disability Studies, Volume 10, Issue 3,4. We asked Ann to talk a little bit about herself and her experience as an artist.

Ann Millet-Gallant

1. Tell us a little bit about yourself.

I am a professor of art history and liberal studies for the University of North Carolina at Greensboro. I am the author of two books, The Disabled Body in Contemporary Art and Re-Membering: Putting Mind and Body Back Together Following Traumatic Brain Injury, as well as essays and art reviews for journals. I have chaired several panels at academic conferences on the intersections between art history and disability studies and am currently co-editing a volume of such essays titled Disability and Art History. I am also an artist who paints, draws, and makes collages about the experiences of her disabled body, and I do portraits of pets and still life compositions.

Ann Millet-Gallant

2. What role does the artist have in disability culture?

The artist can express a number of experiences of being disabled in culture. They can utilize their disabled bodies as the subject and creator of new, liberated, and multifaceted images of disability.

3. Why do you feel this forum is a critical topic?

Art history has not been as engaged with disability studies as have other disciplines of the humanities.  Visual art contributes greatly to images of disability in visual culture.  I believe exploring the intersections between art history and disability studies fosters a new area of research and new understandings of representations of disability in visual culture.

 

Ann Millet-Gallant

4. What work do you most enjoying doing?

In terms of artwork, I most enjoy painting. I like mixing and layering color.

5. What’s your favorite art work or artist?

Frida Kahlo is my favorite artist. She was a disabled artist who painted self portraits in which she portrayed a number of her life experiences. Her work is often considered expressions of her “suffering,” and they may have been cathartic, yet they are also bold, brilliantly colorful, and spectacularly dramatic.

6. Describe a real-life situation that inspired you?

I am congenitally physically disabled, and in 2007, I had an accident that resulted in traumatic brain injury. One of the many forms of therapy that contributed to my recovery was art therapy. My artwork and writing have been greatly influenced by these experiences.

Ann Millett-Gallant

Don't miss the current issue of RDS that includes a wide range of perspectives on art history and contemporary art with a disability studies focus. This issue also includes research articles on topics such as Dyslexia, the Paralympics, and accessibility in Jordan and Peru. You can find the current issue here. Stay tuned for the launch of RDS' new open access website. Coming soon!

 

An Interview with Tammy Bernasky

Tammy Bernasky

      We met Tammy at the Pacific Rim International Conference on Disability and Diversity in Honolulu. Her passion for her work is so vibrant that we couldn't wait to share it with you.

1.    Could you please tell us a little bit about yourself?

I was born and raised in a small town in Nova Scotia, Canada. I have a fantastic family back home who are incredibly important to me. I’m very close to them (my parents, sister, niece and two nephews, as well as lots of extended family). As an extrovert, I love learning about people and getting to know them and hearing their stories. I’d say I’m a very curious, optimistic and philosophical person. I love to laugh and smile a lot!

I have a passion for learning. I received a master’s degree in political science in 2004 and immediately jumped into my first overseas volunteer placement in The Gambia.  I subsequently did two other placements in Sierra Leone and Tanzania. I spent a little over five incredibly rewarding years working with the Coady International Institute – a leadership education institute for development professionals with a focus on community driven initiatives. Part of my role was to bring attention to disability issues in the development context. I worked with the most genuine, kind and dedicated people a person could ask for.

Toronto Skyline at night.

I moved to Toronto last year to  follow my passion - to build my life’s work around disability rights and inclusion and working on creating positive perceptions of disability. This led me to the master’s program at York University. 

2.      You are currently a MA student of Critical Disability Studies at York University in Toronto. How do you like the program?

This program has really deepened my understanding of disability rights.  I appreciate the range of experiences and interests of the professors in the program.  I’ve really enjoyed the course work and getting to know my classmates.  We’re a dynamic group with different opinions and experiences and I’ve benefited greatly from the diversity in the classroom. This program has really pushed me to think more critically about disability rights and inclusion. I’m incredibly happy to be part of it.

3.      Could you please tell us about your passion in regards to the perception of disability and how perceptions are shaped?

My priority is  to challenge misleading and false perceptions of disability. I live with cerebral palsy and as such I have a visible, physical disability. My parents always encouraged me to do the things I wanted to do. It never occurred to me that I wasn’t capable of something and so I approached life with a positive perspective.  I have never really faced extreme barriers. I have had many opportunities in life and have made the most of them.  All children should have that same experience of being supported in who they are – to be treated with dignity and respect.  I think it is equally important to challenge societal perceptions of people with disabilities. When people have limited experience with something they tend to jump to conclusions and this is what leads to inappropriate perceptions of disability.

4.      Why are you interested in working with women and children in particular on changing perceptions toward disability ?

I am interested particularly in working with children because I feel that changing perceptions must start early in life.  Children must learn from a young age that they are valuable, contributing members of society who deserve equal access to things like education, public spaces, community events, etc. If children learn this from a young age, they will grow up to be the ones who drive change in their own communities, rather than have external influences trying to create change for people with disabilities.  Empowerment must come from within the community and within the individual.                               

I am interested in working with women, particularly mothers, because mothers are often responsible for many essential aspects of a child’s life and in some contexts mothers are ‘blamed’ or treated differently if their child has a disability.  They too must be empowered to create change in their own lives and to understand that having a child with disability does not mean that she or her family are being punished or cursed.  Women with disabilities also face additional challenges simply for being women. For example, they are more likely to experience abuse and violence than women without disabilities, are more likely to be unemployed and have fewer educational opportunities than men with a disability and women without a disability.

5.      What would you like to see in terms of disability inclusion in international development?

Disability inclusion within international development is a difficult ideal to unpack because it is often defined and influenced by international development organizations. The thing about disability is that it is diverse. The disability community is not a homogenous group. Disability intersects with many other factors such as culture, race, gender, class, age, and where one sits on that diverse spectrum influences his or her needs and experiences.  My ideal for disability inclusive development would be that people with disabilities are fully involved in the development of their communities. This means identifying development needs from within rather than having external players influencing the development agenda.  At the same time, I think we are still at a stage in the disability movement where a twin track approach to inclusion is most effective. That is, development programs must mainstream disability policies in order to create long term change, but I also think that disability-specific programs need to be developed and implemented in communities (by people with disabilities themselves) to address unique needs and concerns in order to ensure more swift and effective progress in the meantime. 

6.      We heard that you are the creator of "Telling People Good Things Day" on September 17. Please tell us more about it!

Several years ago I learned of the passing of a friend from school. I remember thinking how nice he was. Then I realized I never took the time to tell him that. I thought it would be neat to create an event on Facebook.  It would be a day where people could tell each other good things and  it would be a good reason to say all those nice things to people that you might not say otherwise. I started posting the event in 2008. Last year we had 1,041 people join the event. I really just wanted people to tell each other good things, as simple as that sounds. We all feel good when people share positive thoughts with us and so why not make a day of it?  So, that is what I did. You can join the event on Facebook and not even have to go anywhere special to participate.  It is sort of just a commitment to make it a point to tell people good things wherever you are on September 17. Thanks so much for asking me about it.    

You can find the Facebook page at: https://www.facebook.com/events/201397276701358/?source=1

Thanks, Tammy!

 

An Interview with Dr. Susan Gabel

Salam Jalal

The current issue of RDS, Volume 10, Issue 3 & 4, includes an article authored by Salam Jalal and co-authored by Susan Gabel. We are honored to present the following interview with Dr. Gabel on this insightful article that highlights physical disability, marriage, family, and gender in modern Jordanian society.

Dr. Susan Gabel

1. Why was the subject important for you to research?

The idea for this research emerged when Salam was a doctoral student and was thinking about his own marriage options. He realized that as a physically impaired man, he did not want to marry a disabled woman while at the same time his proposals to non-disabled women had been rejected.

Most studies about disability and marriage are conducted through a medical model and tend to explore whether people with physical impairments can perform sexually. We were interested in marriage as a social relationship because in Jordan and conservative Arabic culture in general, marriage is a vital relationship that establishes one as a full member of society. In addition, without marriage, in Islam it can be difficult to experience intimacy.

2. How did you choose the men you interviewed?

Salam was acquainted with the men through his relationships in Jordan. He selected these particular participants because they offered a variety of perspectives.

3. Were you surprised by the participant’s responses?

Salam was surprised because despite the fact that all three participants and Salam are physically impaired, their reasons for refusing to marry disabled women were different.

Susan was not surprised that they refused to marry disabled women but was interested by some of their pragmatic reasons for why they needed non-disabled wives.

4. How do the people of Jordan typically define disability?

Jordan is surrounded by Isreal, Syria, Iraq, and Saudi Arabia

The formal definition is similar to the definition upheld by global organizations like the UN, UNESCO, and WHO. People in Jordan usually view disability as a visible condition.

5. In Jordan, how big is the role that a woman’s family plays in the decision of who she will marry?

In Jordan, it is very hard for males and females, disabled and non-disabled, to marry unless the parents, brothers, and sometimes the extended family endorse the marriage. Marriage will generally not take place unless the woman agrees to it. In very rare situations, parents force their daughters or sisters to marry someone the women do not want to marry.

6. Why are the three men expecting rejection when they seek a wife?

One participant is married and had been rejected many times before marrying his wife. Another participant was in the process of finding a wife and was struggling to convince the parents of the woman he wanted to marry but during Salam’s research, the proposal was dismissed by her family even though the participant and the woman wanted to be married. All three men know that being a disabled man is not desirable in Jordanian culture.

7. How important is physical appearance in Jordan when a man is choosing a wife?

Physical appearance is one of the most important criteria in proposing marriage. Beauty and physical appearance are highly valued, as you can see in what the men have to say.

8. Do you feel the participants are unwilling to marry a disabled woman due to finding her unattractive or more that they find it impractical?

They are not willing to engage with a disabled woman for many reasons. As they say, they find disabled women unattractive, dependent, and unable to carry out the role assigned to them in Jordanian culture (e.g., bearing children). Further, the men expect their wives to provide them with the physical support they need as physically disabled men.

9. Sami talks about oppression…Do you think women with disabilities in Jordan feel the same? Are they resigned to the way they are treated and stigmatized?

Answering this question is outside the parameters of our study but through Salam’s interaction with disabled women in Jordan, he thinks they are even more oppressed than disabled men. They are deprived of marriage, family, and intimacy because men, even disabled men, ignore them.

10. What do you hope to achieve by spotlighting the perspectives of these three men?

We hope to provide a better understanding of the contradictions in the lives of these stigmatized men who reproduce stigmatizing by refusing to marry disabled women. We also hope to illustrate that the men have practical reasons for refusing to marry disabled women, since they view such a marriage as further stigmatizing themselves. In addition, they worry that a disabled woman wouldn’t be able to provide the physical support they need.  The men’s decisions are formed by the social and cultural barriers of Jordanian society and need to be understood within that context.

Be sure to check out this article entitled, "Physical Disability, Gender, and Marriage in Jordanian Society" by Salam Jalal, EDD & Susan Gabel, PhD, as well as the rest of the current issue online at: http://www.rds.hawaii.edu/downloads/