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Thursday, December 4, 2008

Moving Forward with Disability Studies

In May, 2009 we will once again host a disability studies strand at the Pacific Rim conference in Honolulu. Now if contributing to the further development of the disability studies field doesn't grab you, how about sitting on the beach in 80 degree weather with a Mai Tai? The 2008 conference was a great start to our new strand. You can read several papers that emerged from that strand by checking out our latest issue of RDS. It's a good mix of articles, covering the development of disability studies programs, sexuality, media representations, and a thought provoking keynote by Steven Gilson and Elizabeth DePoy from the University of Maine on disjuncture/juncture theory (wow!)

In 2009, we're hoping to build on the success of 2008 by encouraging innovative papers that help to futher the theoretical foundations of DS as a discipline. Not only that, but we want to continue to draw in people from all over the world so that DS is truly an international, multidimensional field of study.

So how is the Pacific Rim conference different from other disability/disability studies conferences (besides being in Paradise)? Well, for one thing, it is a "disability general" conference with a number of strands that appeal to different kinds of people - not only people with disabilities and DS folks but teachers, support service-types, parents of children with disabilities, the independent living crowd, international disability rights people - you've got it, it's broad. Being out here in the middle of the Pacific Ocean, we also tend to get a good group of attendees from the outer pacific, Asia, Australia and New Zealand.

So, enjoy the latest issue of RDS, and see you at Pac Rim 2009!

Monday, November 24, 2008

Normals and Crazies

David, a student in the Disability and Diversity Certificate Program, writes:

The essay “Normals, Crazies, Insiders and Outsiders: The Relevance of Sue Estroff's Medical Anthropology to Disability Studies,” (Vol. 1 Issue 3, 2005) by Diane R. Wiener lauds the promising interdisciplinary study of medical anthropology and disability studies in relation to the amount of growth both disciplines could achieve together in relation to the continuing development and redefining in areas of discipline for people with mental health disabilities.
The essay is a summary of an in depth review of medical anthropologist Sue Estroff and her view of people that have cognitive disabilities with emphasis placed on the classification, institutionalization, rehabilitation, and socialization of people referred to as “crazy.”
Craziness, madness, or whatever the term we in society choose to label individuals with schizophrenia and other mental health disorders can and have been devastating to the community not only for the people most affected by the terms used to classify them but also by the stigma that is attached to those words. For example the medical classification of schizophrenia would in a street conversation be equated with some being called “crazy.” “He is crazy, she is crazy”, are ways people simply dust off their shoulders, so to speak, when a quick, lay term is needed. The terminology is in question for both Wiener and Estroff. The 1970's is discussed as not only a time that receives heavy criticism for the methods used to treat mental illness but is not demonized by Estroff because, per se, she is viewing the positive and negative of both sides. The 1970's, to sum up, is not as bad as it is right now.
So the question for me is how can medical anthropology and disability studies merge to become a bigger and stronger entity in the changing American view of mental illness? Well I believe it has to start at the institutional level. College curriculum needs to be created and have a test run to find if there are indeed individuals who are interested in the the merger of these two disciplines.
I think it is an excellent venture to pursue because anthropology can be made very complimentary to the individual. Like Estroff's research with life narratives of individuals that have mental illnesses we can begin the change of helping this segment of the community by including people that have mental illness into the research. It is surprising to read in the essay that people with mental illness are not nearly as included in their research, care, aid, etc. as persons with a visual, auditory, or learning disabilities.
The combination of both these fields can create a new field like Social Psychology, I think it is definitely worth investigating and more medical anthropologists should be invited into the realm of disability studies. It is after all another area that people have in all cultures and deserves as much attention now as it ever has because of the changing attitudes of people and the new change that we have decided to take as a nation since November 4th 2008.

Youth Suicide

Tiffany, a student in the Disability and Diversity Certificate, writes:

Youth suicide is a major public health problem in the United States today. Youth between the ages of 15 to 24 are more likely to die from committing suicide than from all natural causes combined (National Center for Health Statistics, 2000). Suicide is the third leading cause of death in children and youths. A review of the literature suggests that students with disabilities may be at higher risk for suicidal ideation, especially students with depression, mood disorders or undiagnosed disabilities (McBride & Siegel, 1997).
Very little information is available regarding the prevalence of depression or suicide in students who receive special education services, although relationships between cognitive disabilities and depression and between diminished problem solving abilities and suicidal behavior have been noted. Medical problems have also been associated with depression and suicide. Estimates of the prevalence of depression or symptoms of depression among children and youth with learning or behavior problems tend to be higher than those for the general population (Guetzloe, 1991).
The research literature in the area of suicide reveals that there are two important interrelated factors that correlate with suicide rates: being young and being disabled. Being physically disabled has an effect on the tendency towards committing suicide. Young people who are disabled have the desire to build social relationships w/ others, but sometimes, their physical condition may be a deterring factor in creating and maintaining relationships and may create obstacles. In turn, young people with disability may not involved themselves in relationships with others or others may not want to have a relationships with them, which can lead to social isolation and thoughts of suicide (Burcu, 2007).
Guetzloe (1991) wrote that evidence of a specific psychiatric disorder and other disabilities may contribute to suicidal ideation and possibly be overlooked by educators. Educators should have the responsibility to increase awareness, prevention and intervention activities at their schools and should know how to access local resources and expertise should they encounter a student who has expressed suicidal thoughts or feelings.

References

Burcu, E. (2007). Disability and youth suicide: A focus group study of disabled university students. The Review of Disability Studies: An International Journal, 3(1), 33-48. Retrieved November 10, 2008 from www.rds.hawaii.edu/downloads.

Guetzloe, E.C. (1991). Suicide and the exceptional child (Report No. E508). Reston, VI: ERIC Clearinghouse on Disabilities and Gifted Education. (ERIC Document Reproduction Service No. ED340152)

McBride, H.E.A., & Siegel, L.S. (1997). Learning disabilities and adolescent suicide. Journal of Learning Disabilites, 30, 650-659.

National Center for Health Statistics. (2000). Deaths from 282 selected causes by 5-year age Groups, race, sex: Each state and the District of Columbia, 1995-1998. Retrieved on November 10, 2008 from http://www.cdc.gov.hchs/data/98gms.

Monday, October 6, 2008

Access to Education

Here's what Tiffany, a student in the Disability and Diversity Certificate Program, had to say about Special Education:

Students with disabilities need access to education. Thirty-five years ago, the educational rights of students with disabilities were dramatically and firmly established in law and practice. Prior to that time, many students were refused enrollment or special education services. Only since a federal court case in 1972 and the passage of federal legislation in 1975, have all states been mandated to provide a free, appropriate public education to all students with disabilities. In 1975, the Individuals with Disabilities Education Act (IDEA) were passed. Under the IDEA, states and local districts were given a mandate to provide specialized educational programs for students with special needs, and students and parents were given a mechanism for enforcement of their rights (Weber, 2007).

Special education is a large and expensive system currently serving one in ten students in public school. Many students are placed in special education because of the inability of regular education to accommodate their needs. Research has shown that regular education, if properly modified, can meet the needs of many more students with disabilities, but doing so is challenging (Hocutt, 1996). Of students found to be eligible for special services under the IDEA, only a small percentage (about 5%) are now served in locations entirely separated from the regular school building. Of the remaining students, about one-third spend most of their day in a regular classroom, one-third in the regular school building but in separate classroom and one-third spend roughly half the day in each setting (Hocutt, 1996).

When we talk about education for children with disabilities, the topic of inclusion often comes up. Inclusion remains a controversial concept in education because it relates to educational and social values, as well as to our sense of individual worth (Weber, 2007). Not everyone is excited about bringing students with disabilities into the mainstream classroom setting. Tornillo (1994), president of the Florida Education Association United, is concerned that inclusion, as it all too frequently is being implemented, leaves classroom teachers without the resources, training, and other supports necessary to teach students with disabilities in their classrooms. Consequently, these students are not getting appropriate, specialized attention and care, and the regular students’ education is disrupted constantly. For inclusion to work, educational practices must be child-centered. This means that teachers must discover where each of their students are academically, socially and culturally to determine how best to facilitate learning. Indeed, child-centered teachers view their role more as being facilitators of learning rather than simply transmitters of knowledge (Hocutt, 1996).

Lieberman (1992) points out that many advocates (primarily parents) for those with learning disabilities also have significant concerns about the wholesale move toward inclusion. Their concerns stem from the fact that they have had to fight long and hard for appropriate services and programs for their children. They recognize that students with learning disabilities do not progress academically without individualized attention to their educational needs. These services have evolved primarily through a specialized teacher working with these students individually or in small groups, usually in a resource room setting. Students with disabilities need an education that is appropriate to their needs. It is not enough to just include students with disabilities in a regular classroom if their disabilities prevent them from obtaining education. Appropriateness must be individually determined. Differences in disabilities, severity, and individual strengths means that the federal government and states cannot legislate specific services for students by category alone.

References

Hocutt, A.M. (1996). Effectiveness of special education: Is placement the critical factor? Special Education for Students with Disabilities, 6 (1), 78-102. Retrieved September 20, 2008 from www.futureofchildren.org.

Lieberman, L. M. (1992). Preserving special education for those who need it. In W. Stainback, & S. Stainback (Eds.), Controversial issues confronting special education: Divergent perspectives. Boston: Allyn and Bacon.

Tornillo, P. (1994). A lightweight fad bad for our schools? Orlando Sentinel.

Weber, M.C. (2007). Inclusive education in the united states and internationally: Challenges and response. The Review of Disability Studies: An International Journal, 3(1&2), 19-33. Retrieved September 20, 2008 from
http://www.rds.hawaii.edu/downloads/issues/pdf/RDSv03iss01.pdf

Parent Awareness

Duggal, a student in the Disability and Diversity Studies Certificate Program writes:

Lack of awareness about disability can lead to distress for many parents who have a child with a disability. In the twenty first century, one way to exercise equality of rights and bring about peace could be by creating awareness and educating people about disabilities. Guardians and parents of children with disabilities play an important role in safeguarding their child’s development.

Gregg Roger, an English Professor from Penn State University, learned about is soon to come baby through prenatal diagnosis. Although Roger and his wife were unsure about how they would raise their daughter, who was diagnosed with Down syndrome, they managed to pull it off. Not only did they learn to raise their daughter and take care of her needs but also found happiness for themselves as a family. Education and awareness about disability came about through support groups and other sources. However, the first and foremost step was acceptance. They accepted their child and did not fear for the challenges they might face in raising her.

Joanne Hill, in the United Kingdom, killed her daughter, Naomi. The reason given for why she killed Naomi, although uncertain, was that Naomi had mild cerebral palsy. Joanne had a history of depression and mental illness. Again, raising awareness and providing support to society through education and awareness campaigns can help change and often save lives.

In the RDS article
“Working and Caring for Children with Chronic Illness/Disability: Stories of Disconnection, Cruelty and Clayton’s Support” the parents of children with disabilities feel disconnected from family, friends, neighbors and community members. Parents cited in the article state that understanding and support from others about their child’s disability is a significant barrier for their families.

Sources that can help parents learn about Disability Culture, Education and Awareness:

http://www.patriciaebauer.com/2007/11/28/more-emails-two-prenatal-diagnosis-of-down-syndrome/

http://www.america.gov/st/health-english/2008/April/20080527003343SrenoD5.163211e-02.html

http://www.miusa.org/newsitems/matreq

Disability Studies Student Blogfest

Students in our Disability and Diversity Studies Certificate Program are trying their hand at blogging. So check out their postings over the next few posts and let them know what you think by posting comments!

Thursday, September 11, 2008

On Being Invisible

The lead article of Volume 4, Issue 3 of RDS talks about "virtually invisible women" - women with disabilities who are largely absent from mainstream psychological research. This is shocking. You would think that the combination of Woman + Disability + Psychological Issue would be fertile ground for researchers, but apparently not. People with disabilities are noticeably absent from research in just about any field of study you can think of. Its as if disability has no more significance then having brown hair. Yet when it comes to employing someone with a disability, or educating them, or talking to them, disability suddenly becomes their most important characteristic.

Unfortunately, being invisible is not just a metaphor. Just this week in my Introduction to Disability and Diversity Class we were discussing the protests surrounding implementation section 504 of the Rehab Act in the 1970's, specifically the takeover of the Federal Building in San Francisco. We asked, "Why do people with disabilities have to make such a big fuss when they want something?" Because they are invisible. If you don't make a "big fuss", no one will see you.

Post a comment and let us know what you think about the under-representation of people with disabilities in "mainstream" research. Should we be seen as distinct? How can we convince researchers to see us as a group worth considering?

Monday, June 23, 2008

Music Forum

This in from Alex Lubet:

I'm extremely proud to have had the privilege of editing /To Dance beneath the Diamond Sky with One Hand/, along with my Israeli colleague Na'ama Sheffi. We have a terrific group of contributors writing on a multitude of musical subjects. My own contribution is a brief essay/review of a performance by guitar great and genius inventor Les Paul, who turned 93 Monday, June 9, and is still playing a weekly gig at the Iridium in New York. In addition to both being arm-injured guitarists (and I'm just starting to develop the arthritis he's played with for years), Paul and I share that birthday. Happy Birthday, Les, and I hope you all enjoy the article and Volume Two of this forum.

Thursday, March 6, 2008

Stories

By Steve Brown

I like stories. I like reading stories, telling stories, and encouraging others to tell stories. This is one of the reasons I first got involved with disability culture. The first workshop I did related to disability culture was titled "Speakers of Movement" and encouraged both panelists and audience members to talk about stories. The first poem I consciously wrote about disability culture was called, "Tell Your Story." I've edited two forums in the first three volumes of RDS. The first, in the first RDS issue was called "Disability Culture – A Decade of Change," and included a multitude of stories. One of the reasons I think it is so vital for us to tell our stories is our unfortunate high mortality rate. David Pfeiffer, our colleague, co-editor, renowned disability studies scholar, and one of the inspirations for beginning RDS, died before we could publish the first issue. Tanis Doe, one of the contributors to that forum, and a wonderful artist, advocate and scholar, passed on not long afterward. So it is probably no surprise that the other forum I edited, in the last issue of Volume 2 contained a forum was called, "Sharing Stories, Autobiography and Disability." It included articles and poetry from three countries. That issue also saw our first published article in another language, French. We just posted the first of two issues about disability and music. This is another way for us to tell our stories and my contribution in one of these issues is about artists with disabilities (mostly) talking about life experiences in an art form that connects with lots of people.

Monday, February 25, 2008

RDS Forums

Note from Alex Lubet on RDS Forums

Greetings from Minnesota! As one of the more senior members of the RDS editorial team, I'm excited to be making my blog debut.

2008 begins with a two-issue forum entitled To Dance Beneath the Diamond Sky with One Hand… devoted to disability and music. Some of the highlights are a study of a remarkable inclusive music program in Scotland by Peggy Duesenberry and Raymond MacDonald, a discussion of professional musicians dealing with breast cancer and recovery by Sarah Schmalenberger, Isaac Stein's touching, personal essay on Neil Young, a person with disabilities, father of sons with disabilities, and prominent disability activist, and Ray Pence's remarkable chronicle of soul-funk legend Curtis Mayfield's years as an artist with quadriplegia. For this forum, I was joined as co-editor by my dear friend Na'ama Sheffi, Chair of the School of Communication, Sapir Academic College, Israel.

Prior to assuming my current position as Associate Editor for Forums, where I recruit and assist guest editors to work on theme issues of RDS, I served as guest co-editor (with my U of M colleague Christopher Johnstone) of the forum Parting the Waters: Disability and Deliverance in the Wake of Disaster. Inspired by Hurricane Katrina and the great Asian/African tsunami, contributions also included essays on such topics as the Montreal ice storm, the Israel-Palestine conflict, 9/11, and the AIDS in Africa. Contributors' fields included English literature, landscape architecture, social work, international education, and music. This was a particularly timely, provocative, and popular forum.
We've got several more forums in press or in progress that we think will be similarly interesting.

I'd just as soon not spoil the surprise of what's to come in the way of RDS forums, except to say that the sky's the limit. Please consider submitting a proposal for a cfp yourself. All topics will be considered, with preference given to editorial teams with at least one partner from beyond the US. We are, after all, An International Journal.

Finally, I want to share a news flash not (yet!) related to RDS. One of my all-time favorite music students at the U of M, Monthian Buntan, recently head of his native Thailand's Association of the Blind, has just been elected a Senator in that country. How cool is that?

Wednesday, February 20, 2008

About the RDS Blogspot

The Review of Disability Studies an International Journal: Blogspot

Welcome to our new RDS Blogspot! It's an opportunity to talk about the latest international Disability Studies topics and get feedback from our readers about articles and hot topics in DS.

The Review of Disability Studies: An International Journal (RDS) was founded in 2003 by the late David Pfeiffer and the Center on Disability Studies at the University of Hawaii. Our purpose was to address the need for an internationally-focused academic journal in the field of Disability Studies. The journal contains research articles, essays, and bibliographies relating to the culture of disability and people with disabilities. It also publishes forums on disability topics brought together by forum editors of international stature. Poetry, short stories, creative essays, photographs, and art work related to disability are also welcome. The journal is published four times a year, and each issue runs approximately 50 pages.

We would like to invite you and people from around the world to participate in our new BLOG, subscribe to the journal, advertise with us, serve as anonymous peer reviewers, and contribute manuscripts. The Journal is open to all perspectives, approaches, views, and paradigms relevant to the study and experience of disability.

Special Stuff

My co-editor, Steve Brown, gets pretty riled up when anyone uses the word "special." It doesn't matter that the word "special" has been around far longer than "special education" or the media's love of "special features" about "special people." Don't you dare propose a "special forum" or talk about how you have "special feelings" or order the "weekly special." Unfortunately, for people with disabilities, special things have lost their meaning because of over-use by the special people specialists. A couple of years ago we published a, yes, special forum on, yes, Special Education Meets Disability Studies. To view the issue click here . Check out the two articles by Johnson and Kellner in another issue as well. These are preliminary explorations of how disability studies might inform special education research and practice. Since the issue was published, I 've done a lot more scholarly reading in this area and am convinced that disability studies scholars have much to contribute to improving educational practices for kids with disabilities. What we need now is to conduct more empirical research about how to turn disability studies theory into classroom practice.