Aloha Means Hello and Goodbye

Editorial

Aloha Means Hello and Goodbye

Megan A. Conway, PhD

Editor 

In the summer of 2001 I was a new faculty member at the Center on Disability Studies (CDS), University of Hawaii, literally fresh off the boat from Berkeley, California and still calling myself “Dr. Conway” with awe and pride after years of pursuing my doctorate-or-die. I was chipper, passionate and dumb. I landed in Hawaii as all Haoles do with preconceived and completely wrong ideas about life in Paradise and an irrational fear of giant cockroaches. And as a disabled white woman from the land of Crip Freedom and Pride, I was also in for an additional shock when confronted by prejudice and inaccessibility. Complaining about my rights under the Americans with Disabilities Act got me nothing but mute stares, mulish put offs and a muttered “show some Aloha.” You think?

I came onboard CDS to coordinate a federal grant focused on transition, but my somewhat (at the time) hidden passion was Disability Studies. I had nabbed the job at CDS partly via a connection between my Berkeley mentor Susan O’Hara and longtime Disability Studies Quarterly (DSQ) Editor David Pfeiffer, who was settling into semi-retirement in Hawaii and was pleased to have me increase the number of faculty with disabilities at CDS from 1 to 2. We were soon joined by fellow Cripstar Steven Brown, and felt ourselves almost overrepresented at our center then comprised of 100 faculty and staff. 

By 2003 David had been forced (by his account) to relinquish his editorship of DSQ and had decided to start a new journal, the Review of Disability Studies: An International Journal, with me and Steve as Assistant Editors. I was excited by the prospect of learning about academic publishing and the wild world of Disability Studies under David’s tutelage. And then David died. I did not know David well personally, just had a great deal of respect for him professionally, but I do remember watching the canoes paddle out with his ashes on board thinking, quite selfishly, “now what”? 

Now what was the inaugural issue of RDS, published in December of 2004, conceived of and assembled by David and executed with great enthusiasm and limited experience by Steve and me. It was a gargantium issue, with 27 articles, essays, creative works, book reviews and notes from the field. Contributors (in addition to the three noble editors) included legends and novices, the now living and the now passed: Mark Sherry, Reiko Hyashi & Mariko Kimura, Mary Fleming & William Ross, Adam Corrico & Leonard Jason, Jennifer Coles, Janice Dewey & Megan OHare, David Connor, Beth Omansky, Alex Lubet , Steven Gilson & Elizabeth DePoy, Mark Medoff, Jillian Weise, Tanis Doe, Ottmar Paul, Jean Johnson and Steven Taylor. I really have no idea how or why we put together such a big baby, but it was a good baby and the beginning of a creative project that has sustained me through professional hardships and joys for the past 15 years. 

As you may have guessed by now, I am leading up to a goodbye. After 18 years with the University of Hawaii and 15 years in various editorial roles with RDS culminating with Editor-In-Chief, I am heading back to California and handing over the reins of RDS to someone new. The baby is now a teenager and ready to try new things. I know that our wonderful Editorial Board, Review Board, Editorial Assistant, and new leadership will keep a steady course and maintain RDS’ relevance in the ever growing field of Disability Studies. I leave the particulars of the “now what” for the new Editor. 

If you have made it this far in my monologue about the humanization of an academic journal, you might be curious to know what I am doing next. I am leaving academia for a bit, or forever, time will tell, to work in the “real world”. Sometimes we have to move back to move forward. Sometimes we have to say goodbye to say hello. 

An Entry for the Irish Sporting Pages: Remembering Susan O'Hara

Editorial

An Entry for the Irish Sporting Pages: Remembering Susan O’Hara

Megan A. Conway, PhD

RDS Editor-In-Chief

I sat down to coffee with one of my students the other day, started dishing out advice, and realized that I was her mentor. And the scary thing was, she was actually listening to me. Throughout my life I have had the good fortune to know other people with disabilities who I have looked up to and who have given me the strength to persevere when things seemed impossible. Realizing that I have come of an age where I can and should do the same for others is sobering.

Photo below is of Megan and Susan at the DSP Graduation in 1992.

One of my dearest mentors and friends, Susan O’Hara, just passed away this summer at the age of 80. I first got to know Susan thirty years ago when she was Director of the Disabled Students Program (DSP) at UC Berkeley and I was an enthusiastic and overwhelmed Freshman. Susan, a polio survivor, gathered a group of disabled students together on a regular basis to discuss disability issues on campus and offer advice on how to address them. The advice I remember most is, “What are YOU going to do about it?” She encouraged us to identify specific problems that we all shared, think through solutions, and act collectively on those solutions. It seems cheezey to say this, but Susan “empowered” us. She made us feel like whatever life dished up, we could do something about it.

Susan saw the funny side of things that were also unfair or exasperating. A favorite story of mine was her description of first coming to UC Berkeley and visiting the “dorm” for students with severe physical disabilities. Instead of being housed with other students, their dorm was literally a wing of the campus hospital. “When I rolled in there I expected to see a bunch of sick people,” said Susan, “But the first thing that happened was somebody handed me a paper cup of Scotch and I thought to myself, ‘hmmmm, these folks are definitely not sick!’” She was soon to direct Berkeley’s first residential program for disabled students, which moved out of the hospital and into an actual dorm, but she recognized the wonderful irony of the sense of autonomy that students felt from having their own space even if it was in a hospital wing. 

I last saw Susan a year before she died after she had been confined to her bed for several years due to illness. I will be honest, when I walked into her room I did expect to see a sick person. “Guess what?” she bubbled conspiratorially as I poured tea and selected from an assortment of cookies on the table next to her bed, “Word has it that Queen Elizabeth is going to step down and pass over Charles to make William King!” “Umm, are you sure about that?” I scrolled through the internet looking for a reputable source for this information. “Yes, my attendant told me so this morning. Can you imagine? What does Charles think about THAT?” “I’m sorry Susan but I can’t find anything that confirms that story is true.” “Oh no,” she crowed, “It looks like I have been the victim of fake news!”

Susan, of unabashed nosy Irish stock,  used to call the obituaries the “Irish Sporting Pages.” She loved to read the stories of other people’s lives, or rather what their friends and loved ones thought were the stories of their lives.  She was always modest about her own accomplishments; her leadership in establishing one of the first supported living university residential programs for students with severe disabilities, her years working to advocate for (and exemplifying) independent living, her travels abroad, her volunteer work for a Bay Area philanthropic Foundation, her passion for and contribution to the UC Berkeley Disability Rights and Independent Living Movement Oral History Project, and of course the many dozens of young (and old) people like me who she mentored and encouraged. 

I bid you “adieu” Susan. If any one of us can contribute half as much material to the Irish Sporting Pages as you did, we will have accomplished much. But we still have time to work on our entry.

RDS Commitment to Honoring Diversity

Editorial: RDS Commitment to Honoring Diversity

Megan A. Conway, PhD

RDS Editor-In-Chief

In March, 2017, I authored an RDS Editorial titled Disabled Lives Matter. The Editorial was inspired by a 2017 report released by the Southern Poverty Law Center on how the 2016 Presidential Election impacted school climate for marginalized people including people of color, religious minorities, women and LGBTQ people. The survey revealed that a shocking 90% of respondents saw a negative impact on school climate, but neglected to offer up “disability” as a possible reason for marginalization. The larger point of my editorial was to emphasize that disability – like race, religion, gender, and sexuality – is a critical category to consider when pondering such questions, yet it is often overlooked as the very framing of this survey revealed. However, when the editorial was recently re-released it received a slew of criticism on social media. Especially given the title of my editorial, critics argued that it seemed to rank these various social categories as if some mattered more than others and also seemed to ignore simultaneously experienced disability, race, gender, sexuality, etc. RDS Editorial Board member Jenifer Barclay summed up this criticism pointedly when she wrote:

“[It is] problematic to appropriate the phrase ‘Black Lives Matter,’ especially given the significant backlash and actual violence that people who use that phrase have experienced in recent years. For instance, people peacefully protesting against police violence who invoke the phrase ‘Black Lives Matter’ have been met with militarized police, SWAT forces, tear gas, and physical abuse (e.g. Ferguson, Baltimore). Others, like Colin Kaepernick, are blackballed from their professional livelihoods. Conservative news outlets and neo-Nazis/white supremacists alike routinely frame ‘Black Lives Matter activists’ as angry, lawless, irrational people of color who ‘hate’ white people. Given these realities, I can understand - and agree with - the frustration of those who criticized the editorial and interpreted the (mis)use and distortion of that phrase as insensitive.”  

In the wake of criticism about the Editorial, I issued an apology for any offense that it may have caused some readers, including the following statement:

“These are very difficult times for all of us who are personally and professionally impacted by social justice issues. I as much as anybody understand the power of language to convey meaning, and the importance of maintaining the sanctity of the meaning that words convey. My goal as Editor of an academic disability studies journal is to further understandings of diversity.”

With these words in mind, I would like to take the time to reaffirm my commitment, and RDS’s commitment, to representing and respecting through the promotion of Disability Studies, the richly diverse community of individuals with disabilities and their allies.

First, a reminder about ways RDS has already demonstrated our commitment to diversity:

• RDS was founded in 2003 with a mission to “provide an international forum for people with disabilities, academics, professionals, artists and creators from all backgrounds and expertise to express ideas relevant to disability studies and people with disabilities.”  
• The RDS Editorial Board, Manuscript Review Board and core staff hail from  multiple countries and disciplines and have diverse cultural identities.
• RDS has published over 530 authors from 43 countries around the world.
• RDS publishes articles on a wide range of topics. Some examples of past titles around topics of diversity include Unsettling the Resettled: An Intersectional Analysis of Autism in the Somali Diaspora (v14i1), Changing Disability Status of Immigrants in Australia - Three Cases (v132), Strategies to Create a Culturally Responsive Learning Environment (v11i4), Precarious Inclusions; Re-Imagining Disability, Race, Masculinity and Nation in My Name Is Khan (v10i2), Performing the Pain: Opening the (Crip) Body for (Queer) Pleasures (v6i3) and Physical Disability, Gender, and Marriage in Jordanian Society (v10i1&2).

But of course, we can do better! Here are some of the ways RDS is seeking to remain on the cutting edge of Disability Studies by improving our commitment to diversity now and in the future:

• The RDS Editorial Board is working on a permanent statement and revised author guidelines reaffirming our commitment to language that respects diverse identities, including gender neutral language, and established and evolving understandings of respectful language.
• Led by Forums Editor Jenifer Barclay and Research Editor Mary Jean Hande, RDS will publish 2 forums focused on intersections between disability, diversity and marginalization (target publication dates v15i3, Sept 2019, and v16i1, March 2020). One forum will be focused on these themes within academia and the other within social justice movements.
• RDS is launching a student internship program, to be pilot tested this summer, with a particular focus on recruiting a variety of individuals with disabilities who are interested in gaining experience in academic publishing.
• In order to ensure that work published in RDS is accessible to all, RDS will transition to entirely Open Access in September, 2018.

We look forward to your contributions to RDS as authors, reviewers, readers, and yes, critics.  It is essential that those of us involved in Disability Studies think deeply about the complex relationship between power and injustice and embrace a diversity of experiences and perspectives even if they contradict our own.  This will ensure that Disability Studies remains vibrant and relevant for years to come.

Let's Get Aware

Let’s Get “AWARE” of Preventing Violence through Good Mental Health Promotion

David Leake, PhD

University of Hawaii at Manoa

In February 2018, the United States experienced yet another devastating mass shooting, this time at a high school in Florida with a total of 17 people left dead. Once again, many politicians who are opposed to stricter gun control shifted the blame to “mental illness” despite themselves having records of seeking cuts to programs that promote good mental health and/or opposing parity between physical and mental health coverage in health insurance.

In fact, people with serious mental health challenges are much more likely to be the victims of violence rather than the perpetrators. There are relatively few with a psychosis or highly distorted thinking that might lead to a deadly shooting.  Of course keeping guns out of their hands should be a priority, but real solutions would focus on reducing factors that make some students feel unwanted and alienated, which is true of nearly all students who perpetrate violent acts in their schools.

It is notable that there are evidence-based practices that can be used in schools to promote good mental health and greatly reduce the likelihood of violence. Many of these practices are being promoted through the US government’s Advancing Wellness and Resilience in Education (AWARE) grant program for states and school districts. This program was part of the Obama administration’s response to the notorious 2012 mass shooting at Sandy Hook Elementary School in Connecticut, which remains the United States’ most deadly school shooting with 26 victims. As with the recent Florida shooting, the Sandy Hook perpetrator had a serious emotional disturbance.

The AWARE approach seeks to head off such events through prevention and early identification and treatment. A guiding principle congruent with the disability studies perspective is that students of all abilities need to feel socially valued and accepted if they are to reach their best possible mental and physical health status and gain the most possible benefit from their educations. Social inclusion and mutual respect are therefore strongly promoted.

Key AWARE elements being demonstrated and tested include:

• Raise awareness and conduct program planning through collaboration among families, schools, and communities.
• Establish school teams that collect and use data to identify and address high priority behavioral challenges on campus.
• Increase school and community early intervention capacity.
• Identify and attend to symptoms of trauma.
• Promote social-emotional learning, thereby enhancing overall social skills and mutual acceptance.
• Ensure mental health services are culturally relevant and developmentally appropriate.
• Implement positive behavioral interventions and supports (PBIS), which consist of rules, routines, and physical arrangements that channel students away from negative behaviors without the use of alienating punishments.

When effectively implemented, these practices are known to lead to more welcoming school climates, as reflected in reduced bullying and fighting, fewer students thinking about or attempting suicide, greater mutual respect and acceptance, fewer suspensions and expulsions, and improved academic performance.

Another notable aspect of the AWARE initiative is a focus on increasing interpersonal contacts between students who may be seriously troubled and caring adults. To this end, a required component of all AWARE projects is to train school personnel and community members in Youth Mental Health First Aid (YMHFA), which is modeled on the CPR training approach for cardiopulmonary resuscitation. The eight-hour course enhances the capacity of people to recognize symptoms of distress in youth and to know when and where to make referrals or otherwise provide support.

Mental health first aid courses were developed for the adult population in Australia beginning in 2000, with a youth version added later. Courses are now offered in at least 23 countries. We can all contribute to this movement by completing either or both the youth and adult courses, or even the more intensive train-the-trainer courses. In the United States, you can find courses scheduled near you at www.mentalhealthfirstaid.org/take-a-course/find-a-course/.

CFP Forum on Shame

Deadline Extended: Call for Papers: Forum on Shame

Anticipated publication date: June 1, 2019 (Volume 15, issue 2)

The Review of Disability Studies: An International Journal is issuing a Call for Papers for a special forum on the subject of shame and disability, broadly conceived. It is hoped that through critical discourse addressing the historical and current contexts, contributing factors, effects, and responses to shame, greater understanding of this phenomena will diminish discrimination and violence.

Full papers should be submitted directly to RDS online at http://bit.ly/RDS_AuthorGuidelines no later than June 1, 2018. Please submit to the category “Forum - Disability and Shame”.

For questions about the content of the Forum, please contact the guest editors John Jones, jjones@truman.edu, Dana Lee Baker, bakerdl@wsu.edu, or Stephanie Patterson, stephanie.patterson@stonybrook.edu.

For questions about the submissions process, please contact rdsj@hawaii.edu

Submissions to this special issue will undergo a process of peer-review. Authors will be notified of whether their papers will be invited for consideration in the forum by August 1, 2018. Prospective authors are encouraged to consult the RDS website at www.rdsjournal.org for more information about the journal and its formatting guidelines. Authors are encouraged to review previous issues of RDS in preparing their paper. Please note that initial acceptance of an article does not guarantee publication in RDS. RDS is a peer-reviewed, multidisciplinary, international journal published by the Center on Disability Studies at the University of Hawai‘i at Manoa. The journal contains research articles, essays, creative works and multimedia relating to the culture of disability and people with disabilities.

Disability and Shame Forum Overview

Shame plays a powerful role in social interactions, beliefs, and institutions. Shame and shaming take varied and quite diversely motivated forms. Shame exists as both a cultural and psychological construct, stimuli for and reactions to which are heavily context-dependent. For much of history and across varied cultural contexts, disability provoked shame. Whether understood as the result of personal failings, sins of a family, misapplication of scientific findings, or empirical evidence of an unhappy deity, experiencing disability involved largely unquestioned shaming. During the last decades of the twentieth century, progress much attributed to disability rights movements finally created expanding space between disability and shame.  

Yet, shame remains a powerful and often-accepted tool of social control, an incorporated pillar of our social infrastructures along with cultural norms, popular culture, and public policy. For example, in September 2016, Satoshi Uematsu killed 19 patients at a center for disabled people outside Tokyo. In the aftermath, many family members of the deceased declined to speak to the media and asked not to be identified out of shame that others would know that their family members had a disability (Ha & Sieg, 2016). Such a tragic outcome in Japan in response to fear of disgrace signifies a decided need to examine the role of personal and societal shame and how it affects the lives of people with disabilities.

Topics to be Explored (suggested, but not limited to):

• Shame, disability, identity
• Labelling and shame
• Shame and relationships
• Shame and dependency/interdependency
• Shame and culture
• Shame and access to public programs
• Historical connection between disability and poverty
• Historical shame
• Diversity and shame
• Intersectional approaches to understanding shame
• Reclaiming shame
• Shame and employment
• Societal and family shame resulting in violence against disabled people

Is this a Marriage or a Carriage?

Editorial

Is this a Marriage or a Carriage?

Megan A. Conway, PhD

RDS Editor-in-Chief

Please forgive the pun in the title. Thoughts of “care” and “marriage” were floating around in my head as I was floating around in the pool.  I think about marriage a lot, partially because I am married (surprise, surprise), and partially because in my insecure moments (or when I am mad at my husband) I obsess over the role of care in my marriage. Who is taking care of who? What is “normal care” in our marriage, and what is “crip care”? I am deafblind so I don’t drive (not legally anyway). Am I asking too much when I ask my husband to do all of the driving for our family? My grandmother was not disabled and she didn’t drive. This was not atypical of her generation, as driving was often considered a “man’s job.” Was my grandfather a “carer” of my grandmother because he drove her everywhere? Or a chauffeur? Or a chauvinist?

Other things I have trouble doing independently include killing cockroaches, fixing leaky faucets, setting rat traps, scrubbing really dirty pots, barbecuing, cleaning the oven, climbing onto the roof, understanding the point of football, fixing my computer, and talking to my father-in-law. This is an impressive list of “man jobs” that somehow my liberal upbringing during the sexual revolution failed to teach me, so I do depend on my husband for these essential tasks. And no one would question his doing these tasks in his role as “husband.” Just as no one would question my doing the cooking, laundry, household management and primary childcare in my role as “wife.” I know plenty of women whose husbands do the cooking because hubby enjoys cooking. But if hubby does the cooking because his wife is disabled, that makes him a “carer” instead of “a guy who likes to cook.” If a wife does the cooking, whether her husband is disabled or not, she is just doing her job as a wife.

I recently met a couple where the wife has become significantly physically disabled during the past year. By all appearances the husband has taken on his new role as “carer” with grace, with caring, in fact. But it was also apparent that they still struggle with frustration at new barriers, with the things that the wife is no longer able to do. The “new normal” is hard to face, especially since society takes it for granted that a marriage is comprised of two people who will share equally in daily living tasks. That is an ideological view in a world where women still take on an unequal amount of household and childcare responsibilities even when they also take on an equal amount of financial responsibilities. Where is the help with childcare, transportation, cooking, bathing, and grocery shopping that this family with a single wage earner and a disabled family member needs? It does not exist. These duties are seen as the family’s responsibility, and if one member chooses to be a carer rather than dumping his useless wife off at the local multi-bed facility, that is his problem.

As I read the articles in this issue’s forum on “Cripping Care” I found myself stunned by the obvious but not-talked-about-enough parallels between feminist theory and disability theory. I hope the forum will also change your thinking about how we view care.

When A Hyphen Matters: Reflections on Disability and Language

Editorial

When A Hyphen Matters: Reflections on Disability and Language

Megan A. Conway, Ph.D.

RDS Editor-In-Chief

A colleague recently sent out an email titled, “Respect for My Community” in which he chastised a local service organization for distributing t-shirts that he believes misspelled the word “Deaf-Blind” (with hyphen) as “DeafBlind” (without hyphen). “Would YOU accept a T-shirt that said ‘dEAF’ [with improper capitalization]  or ‘Ward of Hearing’ [with spelling errors]?” he wrote, “Would YOU be proud to wear a T-shirt showing the public the WRONG spelling of YOUR community?” His point is well taken. He is proud of his identity as a Deaf-Blind person. He fought long and hard for recognition of language that would describe his unique disability in a way that also reflects his identity. For many Deaf-Blind people,  the hyphen is important because it signifies that “Deaf-Blind” is its own unique identity that is different from that of Deaf or Blind people. The capitalization of “D” and “B” are also important, because they signify cultural identity just as a capital “D” signifies Deaf cultural identity (as opposed to a lower case “d” which is understood to represent medical aspects of deafness).

Here is the difficulty though - one person’s identity as a hyphenated Deaf-Blind person does not reflect everyone’s identity. I personally am a deafblind (no hyphen) kind of gal. Some of this preference is aesthetic. I just like the way “deafblind” feels. It feels like one, clean, smooth word. For me, the hyphen medicalizes the word. And I am not alone. Outside of the United States, the term “deafblind”  has long been preferred, and it is catching on in the U.S. DeafBlind Citizens in Action (of which I am proud to be a member of the Board of Directors) uses the term “deafblind” (without a hyphen) to describe its membership. Even the American Association of the DeafBlind, once the champion of “Deaf-Blind” (with a hyphen), seems to have recently dropped it. According to one DeafBlind person, when asked about whether or not a hyphen is preferred:

"It is definitely DeafBlind... one word, capital D and capital B and NO hyphen.  It is true that it's always been hyphenated in the past.  When the word DeafBlind is hyphenated, it usually indicates that it is a problem and that it needs a solution.  As you know, DeafBlind people don't have problems that need solutions.... we have a language and culture!  What we need and deserve is a community of people who will learn and respect our ways.”

I personally do not identify with use of the capitol “D” and “B” because I have never quite seen myself as a part of a “culture” related to Deafness, Blindness, or DeafBlindness. This is mostly etiological - Although I am “legally” deafblind I do have some vision and hearing and use speech to communicate. I consider myself to have some degree of membership in all of these communities, they are my people. But for me personally, capitalization does not matter.

This conversation about hyphens and capitalizations will, if it has not done so already, eventually put you into a deep coma. Who cares? Why are we arguing about grammar when there is so much good work that needs to be done to support Deaf-Blind/deafblind/DeafBlind/D/deaf and B/blind people in the community? Well, the answer is that it does matter and it does not matter. We do need to recognize that a hyphen can matter. And then we do need to move on.

Language matters because language has the power to shape societal perceptions, and language also reflects societal perceptions. Those who used to be called “crippled”, “imbeciles”, “deaf and dumb”, and “retards” know how such language impacted how other people treated them and how they perceived themselves. “The Handicapped” fought long and hard for the word “disabled” because it feels more respectful and because “disabled” has become a signifier of identity and community membership that was claimed by disabled people themselves. But there is nothing to say that “disabled” will be a preferred term forever, nor that it is the preferred term for everyone who might be identified as such by others. Some people do not like the word “disabled” because they feel that it does not describe them. Similarly, at one time some members of the Deaf-Blind community decided that “Deaf-Blind” best described that community. But others then, and others now, do not agree.

Now for the moving on. The issue of language always comes up in my Disability Studies courses because students want to use language respectfully, but they sometimes just don’t know how. “Is it o.k. to say ‘handicapped’? What about ‘handicapable’? Anything is o.k. so long as I put the person first, right?” To this later question I want to say, “Oh yeah, sure, if you call me a ‘person who is an imbecile’ that will be just fine” (but I don’t, because I am the wise professor). What I DO tell my students, and what I say to you is, “Respect the person by respecting how they identify themselves.” If you see yourself as Deaf-Blind, and it matters to you that I use a hyphen when I refer to you as Deaf-Blind, I will call you Deaf-Blind.

That’s all very nice miss Pollyanna, but what do we do when we need to reach a consensus about the name of our organization,  or how our disability is cited in the law, or how other people should refer to our community? In my opinion we do our best to ensure that the language that we use reflects the preferences of a majority of our community, the rest of us grin and bear it, and we move on to helping each other make our lives better.

Though it is too bad we can’t all be like my grandfather who always said, “You can call me anything you want - just don’t call me late for dinner.”