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Friday, September 2, 2016

Old and Disabled: Disabled and Old

Old and Disabled - Disabled and Old

Megan A. Conway, Ph.D.
RDS Editor

I was born old, or so I sometimes tell myself. Bad eyes. Bad ears. Bad hips. Creaky joints. When faced with people who don’t seem to comprehend the meaning of the words, “Please speak up, I am hard of hearing,” I find myself explaining, “It’s just like with your grandmother. Pretend I am your hard of hearing grandmother and you’ll be fine.” “Ooooooh,” the light dawns and, yes, they do speak louder, and also treat me like I am feeble minded. You know. Old.

A generation of once boogying Baby Boomers is getting old and they don’t want the music to stop. The little reading glasses are popping out of pockets with an apologetic cough and a dismissive, “You know how it is.” Advertisements are everywhere for “invisible hearing aids” with photos of smiling sort of older looking people playing golf or laughing with their sort of older looking spouse over a bottle of wine. Don’t call it a “disability” because it can be fixed. I wish I could go back to school and become an orthopedic surgeon specializing in hip replacement surgery. Or plastic surgery. Or any field designed to make old people look/feel/act younger. Fund my active retirement, you know?

The irony of the anti-aging movement is that in some ways it has benefited people with disabilities. Those state-of-the-art hearing aids, large smart phone screens and “mainstream” surgeries benefit us too.  But in other ways this movement has hurt us deeply. The stigma of disability grows more pervasive by the day. Trying to forge an alliance with an older generation who spends its time running from the inevitable ravages of time seems fruitless. Our only hope is that the generation who gave us the Free Love movement and the Civil Rights movement will also give us the Love Your Age Movement. Let your grey hair flow and your hearing aids show...

But we are getting older too. People who have lived with a disability for years now find that age and its new crop of disabilities demand a new examination of their strategies for living and self-identity. As a born-disabled I am quite comfortable with my identity as a disabled person. You wouldn’t have to pay me to get me to stand up in a crowded room and shout, “Disabled people rule!” But a couple of years ago my husband, god knows he regrets it now, took a photo of the top of my head because I wouldn’t believe him when he told me my hair was going grey. Let us just say that a significant amount of our family’s income is now going to a very expensive hair salon. No way am I going grey. That would make me look old.

Friday, August 26, 2016

An Interview with Upcoming RDS Author, Forum on Aging: Gregor Wolbring

Gregor Wolbring is known for his contribution to the disability studies field focusing on media, science and technology. He is an Associate Professor in the Cumming School of Medicine, Dept. of Community Health Sciences, Stream of Community Rehabilitation and Disability Studies in Canada. Wolbring will be published in the next Review of Disability Studies: An International Journal Volume 12, Issue 3. Along with author Bushra Abdullah, Wolbring’s “Coverage of aging well of individuals aging with a disability in Canadian newspapers: A content analysis” article seeks to ascertain how disability and disabled people were framed in Canadian newspapers.
Learn more about Wolbring, common misconceptions and the future of aging:
Q. How did you become involved with disability studies?
A. I am working on advocacy issues related to disabled people since I am a child given that I am a wheelchair user. And given my academic career in science and technology (biochemist) I eventually focused a lot on emerging science and technology issues including as it relates to disabled people in my advocacy. And it was then a logical extension to apply for a disability studies academic position to do this work full time
Q. What projects are you working on at the present? What are your plans for future projects?
A. and (students) Future projects depend on interest of students. I mostly have undergraduates as my research students and I try to have the students work on issues they find relevant (within the boundaries of my appointment).
Q. What is the biggest thing that people THINK they know about your subject, that isn't so?
A. I think that people often think that the problem is solved (such as access to water and sanitation) which is not the case.
Q. What is the most important thing that people DON'T know about your subject, that they need to know?
A. For a variety of topics I work on people do not even realize the problems yet as they relate to disabled people; for example potential negative impact of robots on the employment situation of disabled people, I recently published.
Q. What do you think is the future of Aging?
A. As to aging it will be interesting to see whether the area of extreme life extension will come to pass, and what that might mean for disabled people (something I also published on). Another question is how one stays occupied as one ages, being bored is a totally underappreciated problem with aging
Q. What advice would you give to aspiring researchers focusing on media and disability?
A. Our research group published many paper on how newspapers cover topics and the newspapers were falling short every single time. I am not sure that will change. It seems it might become worse given that people are less and less willing to learn about the nuances. One can do a lot of research around media and disability however there is no easy fix without the society wanting to learn again about the grey shades and society moving away from wanting only to learn about soundbites.
Q. How can readers discover more about you and your work?
Q. Do you have a funny or motivational story you want to share about your experience with your research?
A. My students, the WolbPack, are my inspiration.

Wednesday, April 13, 2016

Future of Disability Studies by Tim Lillie

I have been Associate Editor for Research and Essays for the Review of Disability Studies for over a year now. In that time I’ve been impressed and encouraged by the skill and commitment of the people at the University of Hawaii’s Center on Disability Studies who edit and publish the journal. I have enjoyed, tremendously, the opportunity to get to know them, and other new members of the Editorial Board.

The Editor in Chief, Megan Conway, has been particularly good at not only continuing the good work done by previous editors of RDS but in building understanding among a disparate group of Associate Editors and creating a vision for the future of the journal. During much of the time I’ve been associated with the journal, she, and others at the Institute, have done a tremendous amount of work in keeping the journal going and in helping us integrate into the operation of the journal.

The result, as you can see in this issue, is representative of work being done across the board in disability studies and rehabilitation, which is possible due to the excellent level of contributions from authors but importantly to the commitment of the editing staff.  I hope you will enjoy reading this journal and I encourage any of you not already subscribed to subscribe to it as well as to contribute to it.

I also would like to ask us all to think about the future of disability in our world through two older (but still capable of providing surprises) perspectives: technology and disability rights. Forty years ago, in the USA in particular, a number of advocates and organizations were consciously using the Declaration of Independence as a template for why disabled people’s rights were inalienable, even if rights were at the time not well-established in US law or practice. Their efforts have led to (in the USA) an environment where disability rights in education and the community are based on Federal and state or local laws. An unanticipated consequence of basing rights and services on government-created laws results in a situation in which rights granted by a government can, logically, be taken away by a government. At the same time, the United Nations has (since 1948, at least) issued several “declarations” identifying human rights, and  most recently the Declaration on the Rights of Individuals with Disabilities, based on a strong natural rights approach (that is, that certain rights are inalienable, even if not always exercisable, as in the Declaration of Independence). But, what happens to disabled people in an environment where technology, perhaps gene editing (currently occurring as CRISPR) or future genetic therapies can eliminate conditions like Down Syndrome, cystic fibrosis, and so on?  Should a majority in a political system be permitted to take away the right to be as one is, as (say) a person with Down Syndrome? Another way to put this is to think about uses for technology of this sort that many of us might not think of as desirable: for example, should parents be able to prune any genetic condition that they wish? 
The Deaf community is faced with technology that promises a “cure” for deafness, leading to a smaller and perhaps marginalized Deaf community. Why couldn’t parents be able to edit genes for height, or body type, or hair color – or even (should they be pinpointed) genes that might contribute to sexual orientation?
Many of these discussions have been going on for years, but they will become more common and more important over the next 5, 10, or 20 years, as the ability of human beings to direct the future of themselves and their offspring moves from fiction and speculation to reality. No doubt, the pages of the Review of Disability Studies will contribute to the debates.

Tuesday, January 12, 2016

Special Forum on "Deep Impact" the 2015 Pacific Rim International Conference on Disability and Diversity

Review of Disability Studies (RDS)
Deep Impact: Pacific Rim Forum
Katie Aubrecht, PhD, Associate Editor for Forums

The International Pacific Rim Conference (Pac Rim) on Disability & Diversity, held annually in Honolulu, Hawaii, has been widely recognized over the past 30 years as one of the most diverse gatherings in the world. The event encourages and respects voices from diverse perspective across numerous areas, including: voices from persons representing various disability areas; experiences of family members and supporters across various disability areas; responsiveness to diverse cultural and language differences; evidence of researchers and academics studying disability; stories of persons providing powerful lessons; examples of program providers, natural supports and allies of persons with disabilities; and, action plans to meet human and social needs in a globalized world.

This RDS Forum represents a sampling of outstanding disability studies presentations from the 2015 Pac Rim Conference, themed "Deep Impact." The 2016 conference, " From the Margins to the Center", will be held at the Hawaii Convention Center on April 25th and 26th (additional information on the conference can be found using the following web link: Across the four research articles, multimedia piece, and poem selected for inclusion in the Forum, a conception of disability as an identity juncture emerged as a common theme. Disability is imagined as a critical and decisive turning point that disrupts unexamined relations to self, other and society, and conditions the possibility of new ways of relating. Each of the works takes up the ‘deep impact’, the social and symbolic significance of this juncture in different ways.

In “Using the International Classification of Functioning, Disability and Health (ICF) to Improve Understanding of Disability and Functioning,” Patricia Welch Saleeby describes the global impact of a powerful way of identifying and responding to disability and disabled people. The ICF is a framework developed by the World Health Organization (WHO) to measure health and disability of individuals and populations that includes health domains and environmental factors (WHO, 2015). As Saleeby notes, problematic aspects of the ICF have been raised in disability studies. For example, Rob Imrie (2004) suggests that one of the limitations of the ICF is that is has been undertheorized, and that there are components of the ICF that require further conceptualization and clarification. In her descriptive analysis of the ICF, Saleeby suggests that components of the ICF align with a social model of disability and shows how the ICF can be used as a tool to understand the relational and contextual dimensions of disablement. Her reframing the ICF as a tool that directs attention to the social and environmental dimensions of health and disability has implications for how disability is identified within public health and social service perspectives. It also has the potential to ‘impact’ how the WHO is identified and understood within the field of disability studies – as a body that is both medical and oriented by a social model of disability.  

Keisha Rogers, Rahim Skinner and Brenda Cartwright engage the identity juncture via a critical examination of the systematic oppression of culturally diverse students and faculty within university environments in their paper, “Strategies to Create a Culturally Responsive Learning Environment.” The figure of disability as the product of a failure to recognize and respond to cultural difference animates in their analysis of a workshop titled, Keeping it Real: Illusions of Equality and Injustice on College Campuses. Their interest is in the impact that personal accounts of discrimination and exclusion that are shared within the context of culturally responsive education and training programs and practices can have on the treatment of culturally diverse and disabled students and faculty. They conclude their paper with a list of strategies for environmental and cultural change within universities that promote self-reflection and transformational learning in the interest of supporting equity and reciprocity of relationships.

In “The Spoken Word and Emotion in Communication,” Karen Roberts shares her understandings and experiences of the transformative, creative and generative potential of what she describes as spoken word, and which she defines broadly as a performative art form that includes storytelling, music, cabaret, and theatre. Roberts describes how she has used her art as a means of crossing boundaries between self and other. In doing so, she identifies spoken word as an art form that offers an outlet for emotion and self-expression, while at the same time evoking emotion and shared understanding in her audiences. 


This is a photograph of Karen Lee Roberts performing 

Douglas Kidd recollects and reflects on the significance of trauma as he experienced it in the form of a traumatic brain injury that resulted from a car accident in, “Disability Studies Influence on a Profoundly Altered Identity.” Through his moving narrative, Kidd recounts his experiences of survival and living with traumatic brain injury, and how they were shaped not simply by changes in functioning, but also by alterations in his awareness of his surroundings, his sense of self, and of time itself. Drawing on Alison Kafer’s (2013) understanding of how disability renders time queer, Kidd details the emotional affects of temporal dissonance as he experienced them within the context of sudden onset of impairment, and how at times this dissonance took the form of perceived disembodiment. He concludes with his understanding of having experienced a destabilization of identity and emotions as foundational to a transformation in his relations with others and his world, and the field of disability studies as a critical support that he used to negotiate this process.

Steven Brown’s poem “Devastate/Celebrate” depicts the violence and disenfranchisement, systematic exclusion and denigration of disabled persons in an ableist society. However, Brown also notes that even as oppressive social structures and environments shape how disability is experienced, they do not determine it. Through collective struggles for rights and recognition, disability communities have redefined disability and reclaimed disability history, creating space to live, to thrive and to dance. This is cause for celebration.

In “Towards Cultural Inclusion: Using Mobile Technology to Increase Access to Audio Description,” Thomas Conway, Brett Oppegaard, and Megan Conway discuss a mobile application for audio describing National Park Service print brochures in Hawaii. They suggest that this application provides a means of enhancing the experiences of visually impaired park visitors addressing the failure of normative approaches to accessibility that treat access to cultural and aesthetic experiences as a luxury, rather than a right.

One of the definitive characteristics of understanding disability as an identity juncture concerns the way it can turn us towards greater recognition of the power and possibility in turning, re-turning, and of having been turned towards how. The works in this Forum engage the profound impact that environment, culture, communication, contingency, technology and the law can have on social understandings of disability, and the experiences and self-perceptions of disabled people. They also suggest that what disability and disablement mean are routinely negotiated, challenged and redefined in varied and discontinuous ways, from multiple and even contradictory perspectives. The collective impact of these works is perhaps best understood in terms of their exemplification of Tanya Titchkosky’s notion of disability as an “activity of perception” that can provoke a sense of wonder about how disability is imagined in the ways that it is (2011, p. 59):

“Disability is the activity of perceiving and thus representing how we orient to, for example, certainty and ambiguity. As we perceive through disability, then, all of us are intimately a part of what disability becomes in our perception. Disability exists in the midst of this perception, in the midst of people, and in the perception that flows between them. To understand disability as created in the liminal space between self and other allows us to address the confines of contemporary representations of disability, including the oppressive ones.”

Imrie, R. (2004). Demystifying disability: A review of the International Classification of Functioning, Disability and Health. Sociology of Health & Illness, 26(3), 287-305.  

Kafer, A. (2013). Feminist, queer, crip. Bloomington: Indiana University Press.

Titchkosky, T. (2011). The question of access: Disability, space, meaning. Toronto: University of Toronto Press.

World Health Organization (WHO). (2015). International classification of functioning, disability and health (ICF). Retrieved from

Tuesday, September 22, 2015

Inclusion and the Gifts of Art: Editorial by Maria Timberlake, RDS Associate Editor for Creative Works

On an early spring day in March 2015, I received the gift of song at the Museum of Fine Arts in Boston Massachusetts. The gift was offered as part of Sonic Blossom, an exhibit created by internationally acclaimed artist Lee Mingwei[i].   The concept is that an opera singer wanders in the galleries and approaches random visitors asking, “May I give you the gift of song?”  If the museum go-er accepts, they take the prepared seat in the gallery and the song is sung.  In the photo below I am receiving the gift of song from Abby Krawson[ii]

Figure 1 Photograph of the author receiving the gift of song from Abby Krawson
Mingwei refers to the song as “a transformative gift”[iii] and I can attest to the magical nature of this art. I was deeply affected by the beauty and intimacy of sitting in a majestic space and for a few minutes, being the singular focus of the singer and the song.  Three months later, I was back in Boston on a sunny June afternoon to host Mingwei’s Living Room exhibit at the Isabella Stewart Gardner Museum.  The exhibit invites the guest host to select objects of their own, with personal or aesthetic significance and bring them in to the museum.  The host then shares her or his artifacts, telling the stories and engaging visitors in dialogues about the items.  I received another unforgettable gift by being the “artist” for a day.

Figure 2 Photograph of the author hosting Mingwei's Living Room exhibit
Both of these experiences immersed my academic researcher-teacher self into a world of imagination, color, texture, music, and history.  While Mingwei’s art is not about disability per se, his works are about human connection, paying sincere attention to others, and dissolving barriers between strangers.  Mingwei’s work has been described as “a way to engage interaction and nurture participation”[iv] and these themes resonate deeply because I came to disability studies via inclusive education.  For me, inclusion has always been an intuitive response to other human beings and cannot be reduced to an educational philosophy or placement decision based on evaluation results and classroom variables. Many disabled individuals, family members, advocates, and scholars have written eloquently about inclusion and the principles of openness and acceptance.   I have been delighted to discover an individual who gives expression to the spirit of inclusion in visual and performance art. 

The gifts I received at these exhibits continue to accrue and readers of RDS who have been inspired by music, literature or visual arts may understand the significance. Absorbing Mingwei’s art and reflecting on his unabashed desire to connect with his fellow human beings persuaded me to be more explicit about connection and love in my research and teaching.  Mingwei has mended clothes and cooked meals for strangers in his performance exhibits.  I saw how he dissolves barriers, deliberately reverses roles and undoes everyday structures of power and authority with beauty and gentleness.  This vision of social barriers and social positions as malleable is vital to creating an inclusive world. Without any professional claim to the disability field, Lee Mingwei illustrated a counternarrative to the need for separation and I am still thinking about his honesty in seeking connection and his confidence in offering his time and service to strangers.  Many educators have been conditioned to assess and evaluate people before offering participation but Mingwei did not stop to determine whether I possessed the prerequisite skills to be involved nor did he need to be assured that I would “benefit” in some practical way from being included. 

The gifts of art I received strengthened my conviction that creative works and scholarly papers are a unique and vital combination here at RDS.  One artist’s inclusive spirit provided me with an extraordinary experience that I treasure, and a deep thinking about my work that has remained long after the song was sung.  If you know of an artist that you believe our readers might appreciate, consider crafting your own story.   Or perhaps you have art to share? We publish visual images of paintings and sculpture, drawings and photographs as well as poetry and short story. Please join me and the editorial team here at RDS in bringing more gifts of art to our international readership.  

Maria T. Timberlake

[ii] Abigail R. Krawson, Soprano
4 Gross, J. R. & Hyde, L. (2000).. Lee Mingwei: The living room.  Published by the Trustees of the Isabella Stewart Gardner Museum. Two Palace Road Boston, MA 02115.