Narratives of Life with Paraplegia
or Tetraplegia:
It's Not What You Think
A Literature Review by Alicia Fuhrman
Introduction
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Over one billion people in the world live with disabilities
Estimated number of persons in US living with paraplegia or tetraplegia from spinal cord
injury (SCI) is around 270,000--countless more are paralyzed from other debilitating
illnesses such as multiple sclerosis (MS), polio, and Guillain-Barre syndrome
Able-bodied persons tend to perceive persons who are para- or tetraplegic as being
limited in their daily functions and thus to have a lower quality of life (QoL) overall
– Physicians may be particularly susceptible to this, since they most often see the
illness side of disability
– One study compared hand surgeons’ and physiatrists’ opinions of tetraplegics’ QoL
– Hand surgeons rated QoL 38 out of 100 and physiatrists rated QoL 55 out of 100
– Surgeons generally only work with paralyzed patients for a short time; physiatrists
are the physicians who work most closely with para- and tetraplegic patients
– Even the physicians who are intimately involved in the rehabilitation phases of
disabled patients are poor at evaluating their qualities of life
“I simply cannot say—have never been able to say, even at my most depressed, when I have easily enough wished myself dead—
that I wish I had never been born. Nor do I believe that MS has poisoned my existence.” – Nancy Mairs
The Disability Paradox
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Disability paradox: a remarkable number of physically disabled persons report having
an excellent quality of life, much better than nondisabled persons would predict
Why is this important?
– As a whole, the disabled community is diminished if policy-makers and
government leaders do not understand their need for an ample quality of life
– In the community, interpersonal interactions and relationships are hindered if
able-bodied community members do not recognize that the goals and desires of
their disabled neighbors are the same as their own
– In the hospital and clinic setting, patients may not be fully understood or receive
the best possible care if their physicians are not aware of what life is like in an
unfamiliar health state
Thesis: demonstrate through the use of personal
narratives that people with para- and tetraplegia can
have equally good qualities of life as their nondisabled
counterparts, and that, contrary to popular belief,
physical disability does not automatically mean a lower
quality of life.
“Quality of life is what you make it. My quality of life is as good or better than it was before my injury.” – Chuck Stebbins
Excerpts
Self-pity is simply one of those sentiments more likely to
be projected onto one from the outside than generated
within. [emphasis added] That is, because nondisabled
people pity us, they presume that we must also pity
ourselves. This supposition may actually function as a
powerful antidote, inasmuch as almost every cripple I
know, sensing it every day, resents and actively
repudiates it. –Lee Goldstein
To the nondisabled, despondency and
desperation may seem the natural, indeed the
necessary, response to pain, fatigue, and
debility[…] this attitude contributes to neglect
of the needs of people with disabilities. After
all, if you believe we’re supposed to be
miserable, why should you undertake to
alleviate our misery? […] Disabled people with
adequate physical and emotional support,
proper medication for pain and depression,
and ample activity that seems meaningful to
them do not—and ought not—take less
pleasure in their lives than anyone else. Nancy Mairs
Everybody, well or ill, disabled or not, imagines a
boundary of suffering and loss beyond which,
she or he is certain, life will no longer be worth
living. I know that I do. I also know that my line,
far from being scored in stone, has inched
across the sands of my life: at various times, I
could not possibly do without long walks on the
beach or rambles through the woods; use a
cane, a brace, a wheelchair; stop teaching; give
up driving; let someone else put on and take off
my underwear. One at a time, with the
encouragement of others, I have taken each of
these (highly figurative) steps. Now I believe my
limit to lie at [my husband’s] death, but I am
prepared to let it move if it will. When I reach the
wall, I think I’ll know. Meanwhile, I go on being,
now more than ever, the woman I once thought I
could never bear to be. -Nancy Mairs
Much the way the distance we are from two objects affects
our ability to judge the distance between them, people’s
current health affects their evaluations of the severity of
other health states. […]The pleasure of good events and the
pain of bad ones are moderated by contrast effects. –
Brickman et al.
“If a cure came along tomorrow, would I sign up for it? I honestly don’t know. Without my disability I would be different, and I have
no desire to be different. In most ways, I’ve already been cured.” – Vickie Baker
Conclusions and Significance
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The narratives studied demonstrate that physical disability does not have to
mean a lower quality of life
The lives of people with para- and tetraplegia are fulfilling and deserving of
all the same rights and opportunities as their nondisabled counterparts
“Disability does not dictate my quality of life. The way I
see myself and how I live with my disability
determines my quality of life.” – Miki Matheson, threetime gold medalist Paralympian
References
1. Baker, V. (2004). A dark path to God. In G. Karp, S.D. Klein (Eds.), From There to Here: Stories of Adjustment to Spinal Cord Injury. No
Limits Communications.
2. Brickman, P., Coates, D., Janoff-Bulman, R. (1978). Lottery winners and accident victims: Is happiness relative? Journal of Personality and
Social Psychology, 36(8):917-927.
3. Curtin, C.M., Wagner, J.P., Gater, D.R., Chung, K.C. (2007) Opinions on the treatment of people with tetraplegia: contrasting perceptions of
physiatrists and hand surgeons. The Journal of Spinal Cord Medicine, 30(3):256-262.
4. Fellinghauer, B., Reinhardt, J.D., Stucki, G., Bickenbach, J. (2012). Explaining the disability paradox: a cross-sectional analysis of the Swiss
general population. BioMed Central, 12:655.
5. Gurcay, E., Bal, A., Eksioglu, E., Cakci, A. (2010). Quality of life in patients with spinal cord injury. International Journal of Rehabilitation
Research, 33:356-358.
6. Leduc, B.E., Lepage, Y. (2002). Health-related quality of life after spinal cord injury. Disability and Rehabilitation, 24(4):196-202.
7. Mairs, N. (1986). On Being a Cripple. Tucson: University of Arizona Press.
8. Mairs, N. (2000). Waist-High in the World: A Life Among the Nondisabled. Boston: Beacon Press.
9. Manns, P. J., Chad, K. E. (2001). Components of quality of life for persons with a quadriplegic and paraplegic spinal cord injury. Qualitative
Health Research, 11(6):795-811.
10. Matheson, M. (2004). Capable Shogaisha. In G. Karp, S.D. Klein (Eds.), From There to Here: Stories of Adjustment to Spinal Cord Injury.
No Limits Communications.
11. National Spinal Cord Injury Statistical Center. (2012). Spinal Cord Injury Facts and Figures at a Glance. Retrieved from
https://www.nscisc.uab.edu/P ublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf
12. Sale, P., Mazzarella, F., Pagliacci, M. C., Aito, S., Agosti, M., Francheschini, M. (2012). Sport, free time and hobbies in people with spinal
cord injury. Spinal Cord, 50:452-456.
13. Stebbins, C. (2004). Life after a run at the river. In G. Karp, S.D. Klein (Eds.), From There to Here: Stories of Adjustment to Spinal Cord
Injury. No Limits Communications.
14. Ubel, P.A., Loewenstein, G., Jepson, C. (2003). Whose quality of life? A commentary exploring discrepancies between health state
evaluations of patients and the general public. Quality of Life Research, 12:599-607.
15. Westgren, N., Levi, R. (1998). Quality of life and traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 79(11):14331439.
16. WHO and The World Bank. (2011). World Report on Disability. Geneva: WHO Press.
“MS is as much the essence of my ‘I’ as my father’s death and my mother’s remarriage, my Yankee girlhood, my conversion to
Roman Catholicism, my doctorate in English literature – some of these elements chosen, some arbitrarily handed to me. It can’t be
stripped away without mutilating the being who bears it.” –Nancy Mairs