Gregor Wolbring on Human Security

By Gregor Wolbring

When I was asked to look for co-editors to guide an issue for RDS on human security I jumped on it!!! Really this is an area that is underserved in the disability studies discourse. Not that we do not cover it but we rarely use the term “human security.” And the discourse around human security rarely covers disabled people. When you read the RDS forum on human security you will see how underserved we are in the human security discourse. Kirk Allison and Anita Ghai are long time friends and people knowledgeable on the topic of human security and the equally important social cohesion. A society cannot function without social cohesion and disabled people cannot feel equal if they are not part of this social cohesion, if they do not belong. So I hope this issue offers you a lot of insight and entices you to push the envelope in your work and your advocacy. The articles of the issue on human security are a tool for you academically or otherwise to further the situation of disabled people and in the end society at large. So enjoy the issue and use it to the benefit of disabled people .And thanks to Kirk and Anita and all of the contributors. Cheers Gregor

Lost and Found?

Lost. And Found?
By Ann Millett-Gallant

**Megan's Note: Check out Ann's latest article in RDS about the photography of Ricardo Gil at www.rds.hawaii.edu

A few years ago, my existence may best be characterized as lost. I had lost weight, lost hair, lost part of my skull, lost much muscular movement and fluidity, and lost my mobility. I had lost my memory, my history, my sense of security, and my identity. I had lost my mind.
Backing up….In May of 2007, I was vacationing in San Francisco with my friend, Anna. We were exiting a café and for some unknown reason, I shot ahead on my travel scooter and fell off the high curb of the sidewalk into the street. According to Anna, I was not drunk, sick, excessively tired, or otherwise impaired before this. It was unexplainable. I hit my head, began to bleed, and an ambulance was called.
This was all told to me later, as I have no recollection of the accident, any of the trip, or even planning it. I have blocked the whole experience out. I have blocked a lot of experiences out. Even as my memory congeals, much of my life takes place in stories and photographs, but not in the sensations of BEING there. I don’t have any flashes of being in the San Francisco hospital for 6 weeks, much of the time in a coma, and I recall very little of my time spent in a rehab hospital in Columbus, OH (where I grew up and my family lives). I only remember grueling therapy sessions there and one kind nurse, who let me have the whole container of chocolate pudding, which was used to help me swallow medications. I moved in with my mother at the end of the summer, in a place she had rented, but that I thought was her home I didn’t remember. Slowly, my strength and endurance came back. I exercised, read, wrote in a journal, drew in a sketchbook, and began to re-member – to put mind and body back together. I was content to rarely leave my sanctuary.
In a couple of months, I had surgery on my skull to reconstruct the amputation, after which, I had been told, I would improve drastically. Unfortunately, I had to endure a week in the hospital before I had the surgery, after an anesthesiologist punctured my lungs trying to put an IV in my chest. But I digress. I did feel better after my skull was intact, and in just a few weeks, I began teaching an online class, one of which I was supposed to be teaching full time that Fall. My knowledge of art history, the humanities, and how to teach came right back and, likely, got stronger. I was able to concentrate and exert authority, more and more over time. I soon moved back to my home in North Carolina and to my boyfriend, whose name I could now remember. As 2008 progressed, so did I, and I was determined to no longer put anything off. I proposed to the man I love and got married, taught full time, and began to write scholarly articles and to paint again. But I was still lost.
Backing up further….I have been physically disabled since birth, and I have incorporated disability studies as a discipline, as well as my identity as a disabled woman, into my teaching and writing. I know how to teach myself to do things and how to adapt to do anything I want to do. I am (was?) independent. I have traveled internationally, lived in 3 cities, and gotten my PhD. I was, for better or worse, fearless. Now I feel anxious taking my scooter to the grocery store. But the anxiety about injury lessens over time. The anxiety over being lost is still, and may always be, unbearable. I can’t sleep through the night, my moods oscillate from high to low without warning, and I can’t remember people, places, and personal things. I sometimes have to laugh, as, for example, I realize that not everyone looks oddly familiar because I have forgotten them, but that people just look alike. I can laugh at my loss, at times, while at other times I am consumed by feelings of emptiness and the desire to know what happened, and why.
I have learned many, countless things from my accident, about myself and the world I live in. But the main thing I have learned is that “lost” and “found” are not absolutes. They are states of being, always in flux. They collide, overlap, and intertwine. Sometimes, they make it a chore to get up in the morning. And sometimes, they produce accidental masterpieces.
I draw the term “accidental masterpiece” from a volume of essays by The New York Times art critic and columnist Michael Kimmelman (2005). The readings explore the many intersections between art and everyday life, with the theme of art as the ultimate accident. Accidents in literal and figurative forms catalyze discovery, insight, creative production, and indeed, often “accidental” (unexpected and fortuitous) masterpieces. I center one of my courses on this text, and the students have a writing assignment based on tales of loss and discovery. I was inspired to write this essay by the course. My collage predated this essay and proves to embody and personify many themes of my experiences during my accident and its legacy. The title of the collage, “Re-Membering,” refers to the ongoing process of synthesizing the past and present, as well as processes of emotional, intellectual, and corporeal metamorphosis?
The collage format embodies my accident and recovery both visually and viscerally; these visual fragments “collide, overlap, and intertwine,” as do my states of mind. I describe my memory as a random collage of stories and pictures, relating part-to-part without an overarching narrative. It is both a jumble and a medley.
Framing the canvas is a selection of get well cards, chosen from a countless stack that shows the range of people who thought of and reached out to me. Indeed, the support of friends and family got me through my ordeals. The cards strategically range from sentimental to humorous and arrived from close relatives to distant acquaintances. Visually, this frame juxtaposes elephants and kittens, a cartoon image of Dr. Phil, a crayon-drawn “You Go Girl,” designed by my 5 and 3 year old nieces, fields with soaring clouds, gilded lily pads, and magical fairies.
Within the frame are photographs of me in a coma from the San Francisco hospital, as well business cards for my doctor and prescriptions. These medical images are juxtaposed with more happy photographs, especially of my wedding, which was my symbol of moving on and celebrating my life. At the rehearsal dinner, my father presented to me a drawing of my imagined wedding, created by me as a child, a copy of which stands amongst the photographs of that reality in the collage. There are also sketches that I did from magazine pictures when I existed in “my own private world” and drawings I later created on top of printed photographs, when the idea of creating a new, original drawing seemed overwhelming. In one such example, I sketched in pink pen over a printed photograph I took of my feet at the beach. I call this photograph “There’s No Place Like the Beach,” with reference to the Wizard of Oz (because of my Dorothy-esque sparkling red shoes). The placement of this image in the collage recalls the wounded and bleeding feet in Frida Kahlo’s surrealistic self portrait What the Water Gave Me 1938, in which fragmented images from her memory, history, and fantasy assemble and float in the water surrounding her body. Frida Kahlo has always been my favorite artist - my idol of sorts - and now I find yet another connection to her because of my accident. Additional body images in my collage include “finger paintings” of my finger free hands, which I smeared on the canvas. One red hand sits on the edge of a page from my journal, in which I typed out Elizabeth Bishop’s poem “Insomnia.” My many sleepless nights now bring new meaning for me to an old favorite.
The collage is hardly a masterpiece in the conventional sense. But that is its strength. I put energy and frustration and confusion into it. It composes a lot of raw, imperfect, random, and impulsive feelings. In this way, it is therapeutic.

Reference:

Michael Kimmelman, The Accidental Masterpiece: On the Art of Life and Vice Versa. New York: Penguin Press, 2005.

You Are Being Unruly

Our latest forum in RDS is titled, "Unruly Salon", and hails from a series of presentations at the University of British Columbia. The forum includes poetry, artwork, interviews, and general reflections on disability studies and "coming to pride."

The inclusion of the word "unruly" intrigues me. The word is used with pride (I believe) but it brings to my mind times when I am "unruly" because I am standing up for myself. And times when I am "unruly" because my perspective on disability diverges from the so-called mainstream of academics. And times when I am "unruly" because I am interupting by asking people to use my assistive listening device or asking them to describe something visual. The "you are being unruly" look (what my husband also terms "Troublemaker!") brings shivers to my spine, in fact it makes my spine shrink and my shoulders hunch. Until I remember I am not being unruly - I am just being me.

Perhaps it is the Obama-Rama, or just a certain time in my life (40 is just around the corner and my little child is growing up fast - no, not my inner child, my actual child), but I've had a hunger lately for readings, especially biographical, about other "unruly" people: women, Native Hawaiians, gays, African-Americans, techno-phobics, you name it. People who know what the spine shrinking thing looks like and who have had to stand up extra - tall as a result. Maybe that's what brings the pride to "unruly" - knowing about all those others who are so different from you and yet who are all the same.

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!

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.

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