Disability Experience

The Participants’ Description Of The Personal Adjustment Process To
The Disability Experience – A Summary

Copyright 1992, 1995, 2005
By: Gary W. Kelly

This research describes the process of adjustment to a disability as
persons having disabilities – the participants – view it.  The
descriptions differ from those in the literature, which are written
by observers.

A total of 40 adults, 22 women and 18 men, with disabilities, all
living in Hawaii, constituted the sample for this research. The
population ranged from persons in their early twenties, to persons in
their early seventies.  Some have congenital disorders, while many
have acquired their disabilities.  The disabilities ranged from
sensory impairments (14 respondents) to quite severe physical
disabilities, including traumatic head injury, spinal injury,
muscular dystrophy, and post-polio syndrome (26 respondents).  The
length of time that the subjects have experienced a disability ranges
from 5 to 64 years.  The educational levels of the subjects ranged
from 9 to 22 years, with a mean of 15.3 years.   Of the respondents,
50% are Caucasian, leaving 50% of diverse ethnicities.

In analyzing the interviews, a cultural sciences model of
participants and observers was used.  Participants are those having
the actual disability experience personally.  Other members of
community are observers to that experience.  Observers have a view of
disability, which differs from the views of participants in many
instances.

It is ultimately the connotations of disability residing in the minds
of members of community with which persons experiencing disabilities
must interact.  It is these definitions which persons having the
disability experience, must personally re-define in coming to terms
with their individual disability experience.  Each person must
conceptualize new meanings for the term “disability.”

Our Western culture represents its word definitions of the English
language in its dictionaries.  These instruments become the standard
for interpreting the meaning of the words we use every day.  In that
dictionaries reflect word usage, they also reflect the perceptions
and beliefs of the culture they represent in terms of a dominant
perspective.  The Random House Dictionary of the English language,
2nd edition, unabridged states the following definitions:

disability – (1) Lack of power, strength, or physical or mental
ability; incapacity. (2) A physical or mental handicap especially one
that prevents a person from living a full, normal life or from
holding a gainful job.  (3) Anything that disables or puts one at a
disadvantage.

disable – To make unable or unfit; weaken or destroy the capability
of; cripple; incapacitate.  Example:  He was disabled by blindness.

Webster’s New World Dictionary, 3rd College Edition defines the term as:

disability – (1) A disabled condition. (2) That which disables, as an
illness, injury or physical handicap. (3) Something that restricts;
limitation; disadvantage.

disable – To make unable, unfit, or ineffective; cripple; incapacitate.

These definitions are similar to those found in still other
dictionaries.  Participants come to know that these definitions are
inadequate, and do not represent actual experience.  In fact, these
definitions describe what disability is not.  They fail to describe
what it is.  The author’s analogy is that they describe the hole in
the doughnut only.  We know already that the hole is not the doughnut.

It is these definitions that establish the perspective from which
most persons begin their experiences upon the onset of a disability.
Others, born to the experience of a disability, must come to
understand this perspective as being held by most other persons whom
they will know during their lives.  Each must learn to conceptualize
his/her own experiences in his/her own frame of reference outside
that used by community.  It is this process of developing such new
conceptualizations that begins the personal adjustment process to a
disability.

The unstructured ethnographic interviews are a rich source of data.
These data clearly demonstrate the concerns of respondents with
respect to personal factors, interpersonal factors, and community
factors.  The personal factors constitute the discussion of the
Individual Level.  These personal factors can be summarized as follows:

1. conceptualizations of the respondents experiences after the onset
of a disability,
2. the compensatory behaviors which concern the respondents as a
consequence of their disabilities after onset,
3. the respondents awareness of values and changed values after the
onset of a disability,
4. and the respondents adjusted frame of reference for their
experiences with a disability.

One definition of the personal adjustment process to a disability
might well be the development of one’s own definition of what a
disability is, and of what the disability experience consists.  The
respondents describe their own evolution from ignorant observers of
the disability to full participants of that experience.  Many report
the evolution as one of moving from insecurity and ignorance to the
experience of value fulfillment -the living of a richer and fuller
life.  The understanding of this process can perhaps only be
understood by viewing it as the participants do-from within.

The respondents struggled, and often still struggle, to understand
and come to terms with their circumstances – with their
disabilities.  Most respondents report that they just did not
understand their disability at first.  Those born to their
disabilities report that they also had to learn about their
disability separately from simply growing up.  Most begin their
experience with a disability by interpreting their world in terms of
only what they know.  Often this information is inaccurate,
misleading, or based on complete ignorance.

Three characteristic features emerge from the many statements
respondents made which are concerned with compensatory behaviors –
those behaviors, which try to compensate for the disability.

1. Some statements reflect concerns with physical factors in the
lives of respondents.  These statements are discussed as control.

2. Many statements reflect the respondents’ concerns over their
emotions and feelings.  These statements, discussed as coping
behaviors (planning and setting priorities), are arguably a subset of
compensatory behaviors.  They are established in a separate category
because of one additional aspect: organizational compensatory
behaviors appear to be based on situations only.  The process of
prioritization requires value awareness.  Planning behaviors based
upon prioritization require the person to make value-related
decisions in living.

3. Respondents report behaviors associated with alleviation of
frustration, depression, and anger that they experience.  These
behaviors are often self evolved, and sometimes taught.  They are
discussed as coping therapies.

This research describes how respondents sometimes become aware of
their values and change them.  The changes in values are often
required because of the disability.  Values of other people not
having disabilities just don’t work in many instances, and often, new
values are required. Examples of new values are valuing one’s health,
physical access, or the processes of living versus material products.

Many respondents report that the constant demand to make decisions
concerning, “What to do, when to do it, deciding what can be done,
and is it really worth the effort?” etc., brings about a greater
consciousness of their real values.

Further, many of the respondents express that a change in their
values occurred with the experience of a disability.  This change may
be termed as value reformation.  This value reformation permits them
to choose other alternative experiences in which they realize
satisfaction.  This sense of satisfaction as a result of living
according to changed values is termed value fulfillment.  Decisions
begin to be made which are based upon values independent from a
context or situation. The person making such decisions may feel
relatively more secure, or in control, due to an internal certainty
of making a good decision regardless of the complexity of the
situation or context.

This process is not automatic or inevitable.  Not all persons
experiencing a disability make the adjustment.  Many have difficulty
forming concepts of what the disability experience is – defining the
hole in the doughnut.  Many become caught up in compensating for the
disability without changing their values. Many never change their
values due to any combination of these seven factors:

1. A moderate disability that can permit them to “pass” as not having
a “real” disability.

2. Over-protective families who help them avoid the planning and
prioritization that can heighten value awareness.

3. Institutionalization, which may also help too much, and remove the
planning and prioritization from the individual, thus inhibiting
value awareness.

4. An over abundance of finance inhibits value reformation.  Money
can buy services and assist the person in avoiding the planning and
prioritization process by having others do those tasks.

5. A conviction, belief, or values which make the experience of a
disability as it is seem right may inhibit value reformation.  An
example is a belief that the disability is a just punishment for
wrong-doing.

6. Rewards from community for controlling behaviors that justify ones
present level of coping sufficiently as to negate the need for value
awareness, or value reformation.

7. A small peer group, cult, club, or other group, official or not,
that confirms the current status of the person.  This group itself
may be at odds with community, and differs from the previous
statement, in that the group provides its own verification of
experience, and does not depend on a community context for validation.

It appears that any combination of these above factors can inhibit
the process of value reformation.  If this occurs, no meaningful
adjustment to the experience of a disability takes place.  Such a
person may remain convinced that control of others, and control of
circumstances is the best approach to living with a disability.

A seldom seen outcome of the experience of a disability may be
adjustment.  Participants achieve an adjustment of reference frame in
which most paradoxes simply no longer exist in personal experience.
The most difficult barrier in this phase is that participants cannot
expect to have verification of experience from any other human
being.  Each participant must reach the perspective that he/she knows
his/her reality is sane – the observer’s may not be.  “I am not crazy
– the rest of the world may well be” becomes the perceptual context
of experience.  The emotional difficulty of such a transition should
not be minimized.  It may be described as living in the eye of the
hurricane, and like such an experience, it requires constant personal
vigilance of one’s own behavior.  Such participants utilize
retrospection, values, and rigid self-honesty, as routine.

An observer may conclude that such a person has “accepted” his/her
disability.  In fact, the participant distinguishes her/his
experience with disability from her/his experience with community.

The participant who is closest to conceptualization articulates the
circumstances of his/her disability almost exclusively. The
participant who is closest to adjustment rarely discusses
circumstances without values. Thus, it appears that participants move
from being circumstance oriented to becoming value oriented in their
adjustment process.

Those respondents who articulate values most clearly, and attest to
their personal adjustment also profess to have more harmonious
relationships with partners, family, friends, and community.  The
orientation to values appears to promote satisfaction in the
interactions with others.

Like community interactions, institutional interactions are often
characterized as being highly discriminatory by the respondents. And
again, there is a sense that institutions do not understand or
appreciate the experiences, values, or needs of persons having
disabilities.

Virtually all respondents confused social integration with access.
Most respondents believe that improved access promotes social
integration. Few have ever analyzed their thinking to realize that
this is unlikely.

Many respondents voice feelings of responsibility for their
disabilities.  Many feel that they have, and should have, the
dominant portion of the responsibility for their respective
disabilities.  Zola (1981) provides an example of how far this
responsibility can extend in the following quotations:

“We can still learn, be happy, be lovers, spouses, parents, and
even achieve great deeds. It is the 2nd message that I have recently
begun to abhor.  It states that if a Franklin Delano Roosevelt or a
Wilma Rudolph could OVER-COME their handicap, so could and should all
the disabled.  And if we fail, it’s our problem, our personality, our
weakness.”

“Now, this great achievement syndrome blinds not only the
general public but also the achievers.  We are paid the greatest of
compliments when someone tells us, ‘You know, I never think of you as
handicapped.’  And we gladly accept it.”

Zola goes further to grasp the relationship of this socialized
phenomena in terms of its evolution.

“. . . while most minority groups grow up in some special
subculture and, thus, form a series of norms and expectations, the
physically handicapped are not similarly prepared.  Born for the most
part into normal families, we are socialized into that world.  The
world of sickness is one we enter only later – poorly prepared, and
with all the prejudices of the normal. . . . For all these reasons,
whatever world the physically handicapped and chronically ill
inhabit, it is fragmentary in structure and content.  It is, thus,
difficult enough to integrate into one’s own experience, let alone
communicate to others.”

The cultural expectation that an individual has the majority of the
responsibility for the experience of a disability establishes a
system of values and behaviors in conflict to the personal
experience.  The dominance of one perspective on the reality of a
disability has colonized the population with that experience so
thoroughly that their own conflicts with personal experience versus
the dominant view largely remain unresolved.

The values of individualism: personal responsibility, independence
and freedom, constitute the core of Western culture.  The same
culture defines the experience of disability, and controls the
application of the definition.  Inherent in the equation is the
conflict inevitably arising in the person who, having those values,
comes also to experience a disability – a state defined as
restricted, limited, and incapacitated.  So too, are the conflicts
between those having the experience and community apparent when the
application of the definition, and the intervention as a result of
that application, are conducted in ignorance of the experience.

In conclusion, the disability experience is what people with a mental
or physical diversity have when they encounter the definitions of
disability resulting from the values held by the dominant culture.
American culture defines the disability experience in the manner that
the doughnut defines the hole. Persons having a mental or physical
diversity are socialized to believe in the ultimate superiority of
that doughnut over the hole.  The very language is lacking in
concepts with which to discuss the experience from the viewpoint of
the participant.  Disability is a cultural phenomenon then, not an
individual characteristic.

References

Zola, I. K.  (1981).  Communication barriers between the able-bodied
and the handicapped.  Archives of Physical Medicine and
Rehabilitation, 62, 355-359.

The author welcomes your comments and contributions.
More information is available upon request.

The author may be contacted here

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