The Individual’s Experience of Acquired Disability

"Although the [hospital people] were very kind, they did not feel it was essential for me to walk or talk as I had before. Their goal was a very limited recovery. If I wanted a full recovery, I could do it in my own time and at my own expense."
Donal O’Kelly, Stroke Survivor, age 40

"Everything can be taken from a man or a woman but one thing: the last of human freedoms, to choose one's attitude in any given set of circumstances, to choose one's own way." Viktor Frankl, Austrian Psychologist and Death Camp Survivor

An acquired disability, either with a sudden onset like stroke, or the immediate shock of an unexpected diagnosis, generates a level and kind of stress that is unimaginable to any but those who have experienced such an event. However, it is vital that the impact of such events and, in particular the long term impacts, be understood and accounted for both in and out of medical and research settings.

Fortunately, there has been in the past few years an increasing interest in the psycho-social aspects of disability and disease. Yet, in our culture much greater legitimacy and funding are afforded to medical, surgical and pharmacological areas of research. Slowly, however, real people leading real lives are creating and/or commanding the attention and support they need.

The Center was founded based on the stated needs of such people. The 30 years of its growth and development have been driven by individual student’s experiences of their acquired disabilities.

Every individual experiences disease and/or impairment uniquely. Factors such as genetic characteristics, psychological defenses, general state of health, family environment, economic resources, standard of living, social support, and religious faith influence how fully people regain their quality of life.

However, despite the individual differences that are observable in our teaching/learning interactions at the Stroke Center, many commonalities are evident. A summary of the stages of the post-stroke journey described in by Kristen Easton in her article, "The poststroke journey: from agonizing to owning." mirrors our experience at the Center as well as the experiences of others first person accounts found in the scientific literature.

The stages are: agonizing, fantasizing, realizing, blending, framing, and owning. The initial stage, agonizing, which is usually experienced immediately after the stroke event, is characterized by shock, fear, a sense of loss and a sense of impending death. Following this first stage, patients appear to enter a stage that is characterized by illusion. The illusion is that the impairments will magically disappear and full health will be restored. Reality re-emerges with the third stage, when patients begin to accept and acknowledge that the impairments resulting from the stroke are, to a great extent, permanent. This stage is defined by depression, anger and exhaustion.

A full experience and acceptance of this difficult stage appears to be a necessary precursor to the transition toward hope and healing. The last three stages, blending, framing and owning describe the positive aspects of the post-stroke journey. In the blending stage the patient begins to learn to cope with residual stroke effects blending their pre-stroke life experience with their new reality. This process is taken further in the framing stage where the patient uses past experiences to bring meaning to their stroke experience. Joy reenters life and leads the way toward the final stage characterized by acceptance, determination, control and self-help.

Medical treatment often comes to an end at the stage where the permanence of the disability becomes apparent. Individuals are left alone to try to find their way from depression, anger and exhaustion to a place where hope and healing are possible. Those that are fortunate to find the right kind of support or to create a support system of their own make their way to the last three stages. At the Center, most students find their way to the place where joy, acceptance, determination, control and self-help make up their new reality.

In their quest at the Center, eleven factors have emerged as critical to success.  In over 75 interviews of students and caregivers at the Center and the Center’s sister program, the REACH Program these factors continually emerged in the interviews are listed below. They are listed in priority order according to the number of times they appeared in the interview transcripts.

  1. The need to feel valued.
  2. The need to communicate and affiliate with individuals who were experiencing similar impairments, disabilities and environmentally caused handicaps.
  3. The need for accessible cognitive stimulation.
  4. Assistance with depression.
  5. The need to overcome embarrassment about being disabled.
  6. Renewal of hope.
  7. Not to be patronized.
  8. Knowledge and information about resources.
  9. Safe stress and anger release.
  10. To experience humor, fun and pleasure.
  11. Escape from loneliness and isolation.

The Center strives in all of its classes and activities to assure that these factors are addressed.  These factors are taken into account when any new curriculum is designed. 

Personal Narrative References

Cohn S. "Reinventing myself." Be Stroke Smart 1994;11:17-18.

Dahlberg CC, Jaffe J. Stroke: a doctor's personal story of his recovery. New York: W.W. Norton & Company; 1977.

Easton KL. "The poststroke journey: from agonizing to owning." Geriatr Nurs 1999;20:70-76.

Frankl, Viktor. Man's Search for Meaning. Boston: Beacon, 1959.

Josephs A. Stroke: an owner's manual: the invaluable guide to life after stroke. Long Beach (CA): Amadeus Press; 1992.

Lerner, Michael. Choices In Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. Boston: MIT Press, 1996.

Moss CS. Recovery with aphasia: the aftermath of my stroke. Urbana (IL): University of Illinois Press; 10972.

O’Kelly, Donal. “Experience and perspective of the patient.” Age and Ageing 2002:31-S3: 21-23.

Petschulat N. "My life, the second time around." Be Stroke Smart 1994:11:20.

Veith I. Can you hear the clapping of one hand? Learning to live with a stroke. Berkeley (CA): University of California Press; 1988.

Context—Aging Population and Health Care Crisis

We are grateful to Congressman Sam Farr and the US Department of Education,
Office of Special Education and Rehabilitation for the funding support that made this website possible.