Well-being within Disability

Once, about 15 years ago, I went to a meeting on campus that was billed as a gathering of people interested in disability studies.  I expected to come into the meeting room and find a group of rehabilitation professionals.  Instead, I realized in very short order that all others who were there were disability advocates who were, themselves, “disabled.”  I clearly felt an aura of wariness directed toward me — subtly from some, more openly from others.  I was an outsider in the room

The experience of being considered the “other,” and an undesirable “other” at that, had a strong impact on me and my way of viewing myself, our profession, and the people with whom we work.  I think, for the first time, I understood the meaning of “disability” in a new non-medical, non-service oriented way. I also began to understand the role we health professionals inadvertently play as we hone in on assessing deficits and what’s missing, while paying little attention to the strengths that are present within the disability.

I have long thought that those of us who are occupational therapists often find ourselves in a sort of Catch-22 — we focus on existing deficits to clarify and define the treatment options we are trained to provide, while, at the same time, we may ignore existing strengths and abilities. In our practice, the focus on deficits generally outweighs attention to strengths.

I think the people at the meeting on disability studies were wary of me because of the authoritative positioning associated with medical personnel in general and the tendency for health workers to assume that people with disabilities need help — specifically, our help. These were people who were successfully advocating on their own behalf, and who, frankly, were very leery of having a health professional join the group.

These understandings about the tension that often exists between our therapeutic values and our therapeutic practice were sharpened for me a year ago when I first read Craig Schuff’s blog, “Broken Cord.”  In his blog, Craig shares the circumstances of his spinal cord injury and his subsequent experiences of hospitalization, rehabilitation, and, ultimately, return to his previous work as a graduate student in engineering physics.  Of his stay on the rehabilitation unit, Craig wrote this:  “Waking up on the rehab unit, all of my needs are met . . . But as time passes there, there is no realization of what I can do, only of what I can’t . . . Each day brings a new discovery that something else is missing . . . Any conversation, or phrase, or word can show me something new that I’m no longer capable of . . . ”   The focus on deficits embedded in Craig’s words fairly shouts at us.

Are there ways for us to be more fully aware of both the disabilities and the abilities of the people with whom we work?

I suggest that one way to make this shift is to redefine our cultural views of well-being.  When I was actively pursuing my research on caregiving for people with dementia, I came across literature on theories of dementia care, and the use of the term “relative well-being”  as it relates to the health of the person with dementia.  Thinking in terms of relative well-being can help a caregiver feel some satisfaction in his or her caregiving occupation in the face of this unrelenting and progressive illness.  Observable indicators of relative well-being may be small and fleeting, but nevertheless important: smiling, attentively sitting forward, making eye contact, showing affection, helping behaviors toward others, foot tapping to music, independently setting the table for lunch.  Of course, there will inevitably also be much that is “missing”, yet these small social behaviors are evidence of best practice and relative well-being in dementia care.  Can we think about how this concept of relative well-being translates to other situations of disability?

In the past year, I have come across two articles that take a hard look at the concept of disability in our lives.  The thrust of these articles — one on “what’s right with the autistic mind” and the other on living successfully with schizophrenia — is to encourage an approach to disability that focuses not on the deficits of an individual but, instead, on the co-existing strengths.  While both of these articles were written for the general public, the basic point also applies to us as professionals.

In the world of living with autism, Temple Grandin says, “People with autism are really good at seeing details.”  Alternatively, she could have said that people with autism tend to miss the big picture.  But Grandin and Panek suggest, instead, that people with autism need to be supported as they search out activities and careers that are characterized by detail — careers that build on their strengths.  Grandin describes one person with autism who finally found “a language that made sense to her:  computer coding.  By the time she was diagnosed with Asperger’s, at the age of 36, she was enjoying a long and lucrative career as a coder.”

As another example, Elyn Saks described her lifelong experiences with schizophrenia.  Saks was told, when in her late 20s, that she would never live independently, that she might be able to work part-time as a cashier making change, and then, if she was successful at that, she might be able to hold a more demanding position, “perhaps even something full-time.”  After some years fighting against it, Saks accepted her diagnosis of schizophrenia and the fact that she will be in treatment the rest of her life (“excellent psychoanalytic treatment and medication have been critical to my success”).  But what she refused to accept was the prognosis; she decided to create her own narrative . . . “Today I am a chaired professor at the University of Southern California Gould School of Law.”

And today, Craig Schuff has completed his Master’s Degree in nuclear engineering and is continuing on to work toward his doctorate.  Craig said very early in his blog that, at first, “it was assumed that I would be moving back home to do, well . . . nothing.”  Almost all that could be seen was what was missing.  But Craig, too, did not accept this prognosis.  Later, when in rehabilitation, Craig wrote, “As the physical pain reduced, and the medications were in turn reduced, the fog in my brain went on its way.  I started to see not just what I had lost, but also what still remained.  My family was still there,.  My friends were still there.  I still had my mind.  As I thought more about these things, I thought less about being broken. . . Hello anger.  Hello fear.  Out you go.  Hello love.  Hello compassion.  Make yourselves comfortable.  Stay a while.”     

____________________________________________________

http://www.Brokencord.blogspot.com

Grandin, T. and Panek, R. “What’s Right with the Autistic Mind.”  Time, October 7, 2013.

Hasselkus, B.R., “Occupation and Well-being in Dementia:  The Experience of Day-care Staff.”  American Journal of Occupational Therapy, 52 (6), 423-434, 1998

Kielhofner, G. “Rethinking disability and what to do about it:  Disability studies and its implications for occupational therapy.  American Journal of Occupational Therapy, 59, 487-496, 2005.

Kitwood, T., & Bredin, K. “Towards a theory of dementia care:  Personhood and well-being.” Aging and Society, 12, 269-287, 1992.

Saks, Elyn R.  “Successful and Schizophrenic.”  The New York Times, January 27, 2013.

3 thoughts on “Well-being within Disability

  1. Betty, I agree with your perspective and had a similar experience in 1996 at the Society for Disability Studies meeting in DC. It is the only conference that I’ve attended where nearly all scholars had some type of disability, and I was clearly viewed as an outsider, from the seemingly “evil world of medical providers.” I was sensitized to the concept and need for Participatory Action Research promoting “nothing about us without us.”

    Since that time, in collaborative projects with the local independent living centers and the Starkloff Disability Institute in St. Louis, I’ve developed an increasing awareness of these issues. This increased consciousness led me to believe that providers must emphasize personal advocacy and promote quality of life, working collaboratively with the individual with a disability and her/his family or other support system to achieve the individual’s goals. Thank you for this well articulated, sensitive commentary that offers refreshing perspectives on how we may best support our partners in service provision!!

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  2. HI Karen: That is so affirming to hear of your similar experience of being viewed as an outsider at a conference of disabilities scholars. I struggled with this posting — the wording, the concepts, the meanings. Thank you so much for sharing your experiences and thoughtfully linking your understandings of disability with the concepts of Participatory Action Research. I had not made that leap, but I saw the strong connections immediately. Betty

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  3. Another interesting post! Thanks for the perspective. About four years ago, when I was a resident in the CPE program at Meriter Hospital, I seriously crushed my ankle. It was a great opportunity for me to learn about disability, dependence and independence. Though I was not completely defined by the experience, or have lasting effects, it was useful for me to explore it as another learning opportunity.

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