By:
Frederick
M. Maynard, M.D.
Sunny Roller, M.A.
Post-Polio Research and Training Program
Department of Physical Medicine and Rehabilitation
University of Michigan Medical Center
NI2A09 300 N. Ingalls Building
Ann Arbor, MI 48109-0491
Telephone: 313-763-4485
During the past
ten years many polio survivors in the U.S. have actively been seeking
professional
help for a wide range of new physical problems, commonly referred to as
the late effects of polio. Often, these persons require
re-rehabilitation
in order to continue their accustomed social roles. [1] In our
experience
at the Post-Polio Program of the University of Michigan Medical Center,
we have come to recognize among polio survivors three distinct patterns
of emotional reaction to the need for re-rehabilitation. These patterns
appear to result from characteristic styles of living with a chronic
disability.
We propose a model for categorizing polio survivors that is based on
our
observations. Although it is limited by over-generalization, we have
found
that polio survivors themselves have verbally validated our proposed
categories
at many post- polio conferences. A 1963 study of children with polio
and
their families also describes early coping behaviors that are
compatible
with our model. [2]
The model designates
polio survivors as Passers, Minimizers and Identifiers. These labels
characterize
typical attitudes and behaviors that were adopted in order to cope with
long-term mild, moderate, or severe disability. Passers had a
disability
that was so mild it could be easily hidden in casual social
interactions.
They could pass for non-disabled. Minimizers had a moderate disability
that was readily recognized by other people. They often used visible
adaptive
equipment or had to do physical tasks differently in order to optimally
function. They typically minimized the importance of their physical
differences.
Identifiers were severely disabled by acute polio. They generally
needed
wheelchairs for independent mobility. Some also used respiratory
equipment.
They needed to fully identify with their disability in order to make
major
lifestyle adaptations and successfully cope. A closer look at each
group's
coping style is presented in order to clarify the typical patterns of
emotional
reaction that occur when polio survivors experience disabling late
effects.
Passers worked
diligently to hide their long-term disability. Many of their
acquaintances
probably did not know they were disabled in any way. Although intimate
family members and friends may have known, on the whole Passers became
psychologically invested in hiding their disability from other people.
Even today, they do not like to have to explain it or to talk about it.
They don't want to think of themselves as having a disability. By using
denial, they have been able to put their disability out of existence
mentally
and physically and create an image that completely fools the casual
onlooker.
Passers may hide a paralyzed hand by keeping it constantly in a pants
pocket
or cover slightly imperfect body parts with stylistically camouflaging
clothing. Passing is a coping style that requires constant vigilance
and
attention to the non-disabled disguise. Good Passers believe they
cannot
"blow their cover" or they might get stigmatized as part of society's
disabled
minority.
We administered
an attitude survey to 100 polio survivors and discovered that Passers
were
the group who were most distressed in having to adjust to the late
effects
of polio. They were more likely to be emotionally overwhelmed by the
physical
changes from the late effects than any of their post-polio
counterparts.
It is important for helping professionals to know that among post-polio
people, it is the Passers who have the greatest resistance to making,
and
the most emotional difficulty in accepting, some of the relatively
minor
lifestyle adaptations that are needed to cope with the late effects of
polio. Passers who are confronted with post-polio sequelae often have
their
self-image threatened because they cannot pass any longer. Their
disability
has become undeniable and suddenly they must give in to it. They may
become
frightened because they do not know how far it will progress. Typical
thoughts
may include: "Wearing a brace could lead to using two crutches, and a
year
later to a wheelchair, or who knows what after that... and now that the
disability is obvious, what will other people think ... ?"
When confronted
with polio's late effects, Passers often must alter their
self-perceptions
and life-style in order to continue successful coping. Their former
coping
style may no longer be effective and new attitudes and behaviors must
be
learned. Clinically, Passers can often be fully rehabilitated because
their
new disabilities are less severe. They can be reassured that modern
orthotics,
such as plastic braces, can be nicely worn under clothing and
completely
hidden under shoes. Passers may require an unexpected amount of
understanding,
patience and empathetic support from health care professionals because
of strong emotional reactions that are not only triggered by the
impending
public nature of their new disability, but also by memories of past
polio-related
experiences. [3] When their disability progresses from mild to
moderate,
they become undeniably disabled for the first time. This can be a harsh
reality for them to finally face, accept, and adapt to.
Minimizers are
post-polio people who have had a moderate disability that was always
apparent
to themselves and to others. They have coped with polio's first effects
by minimizing the negative and accentuating the positive. Minimizers
may
say, "So what if I use braces and crutches and I can't walk in a normal
fashion, look at all the other things I can do." Minimizers have
adapted
by de-emphasizing physical pain, deformity, and functional
shortcomings.
Many have pursued intellectual vocations and
avocations in place of more physical or athletic activities. They often
have been high achievers who have pushed themselves to their limits.
Minimizers
have learned how to tune out their bodies in order to ignore physical
imperfections,
a process called "devaluing physique". [4] This practical approach to
living
with an obvious physical disability has often been helpful for
effective
coping in a society which emphasizes physical beauty and prowess.
However,
Minimizers are often so adept at this form of denial that they
recognize
polio's late effects only when physical symptoms become unbearable and
insurmountable. In order to survive and function at peak capacity they
may have learned to use minimizing as a defense mechanism to such an
extent
that they are quire insensitive to their own pain, sadness, weakness,
and
anger. This perception can occasionally generalize to become an
insensitivity
to similar conditions and feelings in other people, including persons
with
a more severe disability.
When asked to
respond to the survey statement, "I feel uncomfortable around other
disabled
people," Minimizers endorsed it more than the other groups. We found
that
they often had negative attitudes about severely disabled individuals
as
a group, particularly
wheelchair-users. Therefore, they may feel that to personally begin
using
a wheelchair signals joining a social group that they have previously
devalued
and/or implies defeat, helplessness, and not fighting vigorously enough
against polio's disabling effects. Minimizers sometimes admit to
difficulty
being socially linked with someone in a wheelchair because the very
association
might somehow generate their own need to use one. It is useful for
professionals
to recognize these phobic-like reactions when they occur and employ
techniques
for helping Minimizers change their perceptions of wheelchairs and
wheelchair-users.
Indeed, these post-polio patients are the most likely to physically
benefit
from beginning to use a wheelchair.
Minimizers may
have difficulty verbally describing new physical symptoms because they
are skilled at ignoring and/or denying such problems. They need
coaching
and encouragement to fully focus on their body sensations and reactions
and to become what might be called "wise hypochondriacs." Health care
providers
must listen closely to Minimizers for the slightest mention of new
medical
problems and give them permission to elaborate. Minimizers most
commonly
feel guilty about causing others, including health care professionals,
inconvenience related to their new disabilities. Additionally, they are
likely to have intense angry feelings about having to deal with new
disabilities
and re-rehabilitation. [5]
In spite of many
negative emotional reactions, Minimizers know how to set goals and
achieve
them with persistence and determination. The astute health care
professional
will encourage and help empower the Minimizer to use these qualities to
re-focus on what is important in life; to take another look at how to
be
successful; to set new goals and achieve them in new ways. Health care
professionals must be patient in helping Minimizers work through
understandable
resistance, fears, and anger with re-rehabilitation. They must respect,
remember, and sometimes remind Minimizers that they are experienced
copers
who have a well-proven capacity to adapt effectively.
Identifiers are
post-polio people who have usually been sufficiently disabled since
their
acute polio to require wheelchairs for mobility. They have needed to
more
fully integrate their disability into their self- image in order to
create
successful and meaningful
lives. Through identifying with others having physical disabilities,
they
have gained the strength to tolerate social prejudices and
architectural
barriers. Not suprisingly, many became disabled rights activists and
helped
start the independent living movement. Among the three groups sampled
through
the attitudes survey, Identifiers most strongly endorse the statement,
"high achievement is a requirement for survival as a disabled person."
They also most intensely believed that taking an active role in the
disabled
rights movement was necessary to their future well-being in society,
and
that fully acknowledging their disability will help them cope with it
more
effectively.
With the onset
of polio's late effects many Identifiers confront the loss of their
independence.
The smallest functional forfeiture can be extremely distressing to a
person
who has been chronically severely disabled. If breathing function
becomes
significantly impaired, death may be a realistic threat. For
Identifiers
who have had to work diligently to learn too feed themselves and
perform
other simple self- care activities, independence in daily living
activities
may be one of the most important accomplishments
of their lives. Therefore, if post- polio sequelae threaten a decline
in
strength, they can be expected to appear extremely distressed.
Effective
helping professionals need to anticipate the Identifier's concerns and
recognize that their intense interest in autonomy and control of their
environment is not pathologic. Identifiers have needed to develop a
heightened
concern about physical independence and about personal choice with how
required help is given in order to attain high self-esteem and survive
with their severe disability. When their freedom to control their life
activities is threatened by new physical limitation or even by
temporary
dependency imposed by a hospital setting, Identifiers may experience a
threat to their whole life and purpose for living. This reaction often
leaves Identifiers vulnerable to other's false perceptions of them as
being
overly controlling,
difficult, and demanding people. In reality, they simply know what they
need and are not too timid to ask for it. The informed health care
professional
will accept this and will do everything possible to let them continue
too
feel, and actually be, in charge of what happens to them.
Passers, Minimizers
and Identifiers each adopted a characteristic coping style in the past
that worked to create some of our generation's most successful and
resilient
survivors of physically disabling illness. The onset of new post-polio
problems can present a challenge to their previously successful methods
of coping and create significant emotional distress and pain. Health
care
professionals need to be aware of polio survivors' typical past coping
styles and of their need to employ different tactics for coping during
the re- rehabilitation process. They can point out to polio survivors
that
it is possible to find opportunity in their time of change. Passers can
"come out of the closet", relax and enjoy a little more freedom with
their
very acceptable natural physiques and identities. Minimizers can also
be
empowered to live life with a greater sense of wholeness through more
fully
recognizing, accepting, and integrating all aspects of their bodies. By
relinquishing their struggle for physical independence and accepting
new
personal and technological assistance, Identifiers can gain the time
and
energy to develop new pursuits and cultivate
other realms of interest. It is in this honest and supportive spirit of
healthy transition that successful re-rehabilitation can occur for the
ever-adapting group of polio survivors.
REFERENCES
Maynard F: Late Effects of Polio Create Large Demand for Re-rehabilitation. Rehabil Rep 1986;2:2-3.
Davis F: Passage Through Crisis. Indianapolis, The Bobbs-Merrill Co., Inc. 1963.
Backman M: The Post-Polio Patient: Psychological Issues. J Rehabil 1987;53:4:23-26.
Frick N, Bruno R: Post-Polio Sequelae: Physiological and Psychological Overview. Rehabil Lit 1986;47 (5&6):106-111.
Roller S: Post Polio Memorandum. Polio Perspectives 1987;2:3:1-2. (Available through The Brandon Township Public Library, Post-Polio Collection, 476 Mill Street, P.O. Box 489, Ortonville, MI 48462)