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Carol J Gill. Journal
of Palliative Care.
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Abstract (Summary)
In my work as a disability studies
researcher, I am accustomed to excavating the hidden social dynamics of
phenomena that seem simply physiological to the average observer. We know that
scholars of race and gender have produced a huge body of work to disentangle
"biology" from the social determinants of "destiny" for
women and people of colour.
Because people with disabilities
have had to fight tenaciously to counter stereotypes of weakness and
incompetence, discussions of our vulnerability feel risky from the outset. One
way to offset the damage of conventional thinking about disability and
vulnerability is to pursue a more complex understanding grounded in disabled
people's experience. Conversations with my fellow members of the disability
community over the last few years have taught me a new way to look at
vulnerability. I do not take issue with the idea that many people with
disabilities are vulnerable, but I am struck by how much that vulnerability is
socially constructed rather than inherent in our physical or cognitive
conditions.
SOCIAL CONSTRUCTION OF DISABLED
PEOPLE'S VULNERABILITY
In my work as a disability studies
researcher, I am accustomed to excavating the hidden social dynamics of
phenomena that seem simply physiological to the average observer. We know that
scholars of race and gender have produced a huge body of work to disentangle
"biology" from the social determinants of "destiny" for
women and people of colour. In the last two decades, disability studies scholars
and disability rights advocates have built upon these efforts to show that
disability, too, is a socially constructed category (and a relatively modern
one, at that), and that key disadvantages faced by disabled people emanate from
social treatment rather than from deficiencies in their constitution (1). This
social analysis has been warmly welcomed by people with disabilities, who
appreciate how well it documents what they have experienced. To paraphrase a
common response, "All my life I've been told that I can't get into my
neighbourhood restaurant because my legs won't take me up stairs. Now I know
it's because the restaurant owner won't build a ramp." In his classic
analysis of society's power to shape and constrain the lives of people who
function outside the norm, sociologist Robert A. Scott declared, "Blind
men are not born, they are made" (2, p.121). In humble homage to Scott, I
assert that disabled people are not innately vulnerable but are made so by a
social environment that devalues human difference.
Vulnerability concerns power and
lack of power. Many people with long-term impairments confront society's power
over their lives each day as they struggle with abridged choices and blocked
access to resources. They know that, regardless of their value and competence, they
are less likely than nondisabled counterparts to get an adequate education, a
job, an organ transplant, a ride to where they need to go, or a date (3). They
are more likely to be socially isolated and under the poverty line. These
inequities constitute the foundation of disabled people's status as a
vulnerable group. People with disabilities may be particularly vulnerable
during periods of economic stress. As cost-cutting measures take effect,
community values prescribing charitable care of disabled citizens can give way
to questions about prudent distribution of resources (4). Although most people
with disabilities hate being objects of charity, we realize that we are not
likely to fare any better when the discussion moves from charity to measures of
social utility!
Vulnerability in the Medical System
Unfortunately, many people with
disabilities feel particularly vulnerable in medical settings. Medical
classification, emphasizing abnormality and deficiency, permeates the public's
understanding of life with disability. Doctors and other Healthcare
professionals have served as the primary authorities in public policy affecting
us, as well as in our personal life histories. Whether we remember them as
kindly paternal or frighteningly austere, medical experts have diagnosed our
problems, predicted our potential, and prescribed measures to alter our bodies
and our futures. That is a lot of power.
Now, managed care has inserted
issues of social utility into this dynamic. Although managed care policies may
decentralize some of the authority formerly vested solely in the physician,
they have failed to transfer more control to people with disabilities who
require substantial assistance to live. In an atmosphere where words like
"extraordinary" and even "futile" get attached to the
supports we use each day, we feel caught between the power of the medical
expert to decide what we need, and the power of the healthcare funding system
to judge our needs as excessive. For example, in August 2005, the St. Louis
Post-Dispatch reported that Missouri Medicaid would no longer pay for such
resources as ventilators, feeding tubes, crutches, and wheelchair batteries
needed by an estimated 340,000 adult Missourians with disabilities. These
services are deemed "optional" under Medicaid rules, and the Missouri
In this context, disabled people's
distrust of the healthcare system has only intensified, impelling them toward
hard decisions. Several years ago, I talked with a disabled man who has an
important job, many friends, and an impressive list of accomplishments. He told
me emphatically that he would never again enter a hospital no matter how
critically ill he becomes. I hardly knew how to interpret such a declaration. I
found it drastic and disturbing. I wondered if he was severely depressed.
Before long, however, I heard other disabled persons take up this theme. Most
are individuals commonly described as "severely" disabled. They
appear and function in ways judged extraordinary. Some use ventilators and most
require technological and human assistance to accomplish the tasks of daily
living. In the context of their extensive physical impairments, some observers
might read their avoidance of hospitalization as a rational advance directive.
But that would be a misinterpretation. Rather than forego life support, they
have resolved to protect their lives by bunkering themselves in familiar
surroundings until the end. The medical system, they say, is a dangerous place
for them.
When I shared these stories with a
physician friend, she seemed dispirited. Surely, something could be done and
must be done to help these individuals feel supported in medical settings. Her
view of hospitals was very different from theirs. She hospitalized her patients
to increase their safety, to surround them with care. At that time, I had no
reason to take sides in this difference of opinion. My own sense of hospitals
was vague because I had had little recent experience of them.
My perceptions have changed
dramatically since then. In the last four years, I have been hospitalized twice
for respiratory problems and once for surgery. I am still traumatized by those
experiences.
PERSONAL REFLECTIONS ON
VULNERABILITY AND DISABILITY
As background, I should mention that
I contracted polio the year before the Salk vaccine was approved for public
distribution. Since then, I have spent most of my life using a wheelchair for
mobility and dealing with respiratory problems. Fifteen years ago, I developed
severe sleep apnea and began using a positive pressure mechanical ventilator
noninvasively via nasal mask each night. Initially, I was hesitant to accept
this remedy for my restless nights, shortness of breath, and soaring blood
pressure. But I was fortunate. I was in touch with a community of people with
neuromuscular disorders. Many used ventilators, some part time and others full
time. They were wonderful role models in that they claimed the right to live
fully but in nonnormative ways. In fact, they incorporated assistive technology
and human assistance into their daily routines so matter-of-factly, so
gracefully, that these supports became a "normal," almost trivial,
part of their lives. These friends understood that I had been conditioned by
popular cultural images to equate ventilator use with dying, suffering, entrapment.
The ubiquitous phrase "hooked up to a machine" haunted me. My friends
deprogrammed me and helped me view ventilators as the benign, useful devices
they are. They gave me information and encouragement. They introduced me to
doctors who were familiar with people like us, and the doctors provided
additional information and encouragement. Together, this network allowed me to
see that, in the greater scheme of things, noninvasive ventilator use is not a
big deal. Their reasonable stance saved my life.
A very different reception greeted
me when I was hospitalized with my first bout of pneumonia four years ago.
Arriving with my own ventilator, I was immediately treated as if I were a
hopeless case. Hospital staff came in and out of my room, inspecting my
ventilator, sometimes riddling with its controls without explanation and
without addressing me personally in any way. One nurse threw back my blanket,
lifted my hospital gown, and shouted into the hallway, "Why isn't she
catheterized?" Apparently, she thought anyone with limited mobility also
had impaired sensation and lack of bladder control, neither of which is true
for most people who have had polio. Sometimes, in self-defence, I tried
actively to engage staff in conversation, to signal my conscious humanity before
they did something demeaning to me. Although this strategy helped in some
cases, a few of the conversations that ensued were more unnerving than being
ignored. In one instance, a pulmonary specialist seemed startled to find me
capable of intelligent conversation. A look of pity swept across his face. He
patted my shoulder and said he would do his best to help me get through this,
but.... He did not complete the sentence and, by that point, I did not want to
hear its conclusion. As it turned out, my chest X-ray and other tests revealed
that my condition actually was not critical. The doctor who had been taken off
guard by my intelligence was equally surprised by my viability.
Other conversations I had with
healthcare professionals during that hospitalization and subsequent ones
conveyed their disturbing lack of familiarity with living long-term with
extensive impairments, as well as scepticism about the value of such a life.
Most expressed surprise that I had a job, let alone a job as a professor who
could teach people things. They were also surprised to learn that I lived in my
own home, was married, and had young grandchildren. On their own, they could
not conceive of my life being ordinary or lived outside of a healthcare
facility. As we discussed these facts of my existence, I noticed that theirs
eyes would dart to my ventilator and back again repeatedly. They were trying to
fit both my physical condition and the fullness of my world into their narrow
conception of life with a disability. Most could not reconcile the two domains.
Although my needs for physical
assistance in activities of daily living (ADL) sometimes elicited pity and
other negative reactions (such as irritation from overworked nursing staff over
the extra time it took me to eat, bathe, transfer in and out of bed, and use
the bathroom), it was my ventilator that prompted the most comment during my
hospitalizations. A sweet young medical resident sympathetically exclaimed that
it "must be awful to be dependent on that." I told her, in my best upbeat
conversational tone, that, actually, it was not. Rather, it was quite
comfortable and helpful, and, furthermore, I did not think of myself as
dependent on it but saw myself as simply using it. Her fixed expression told me
that this last point about my agency was lost on her. Nor did she seem
persuaded that the ventilator was not an instrument of torture. She left my
room with her prejudgments intact.
In addition to sympathy,
conversations with health professionals about my ventilator revealed a
frightening lack of knowledge. Many physicians and nurses thought that my
ventilator pumped oxygen into my lungs, when, in fact, it just gives me breaths
of room air. Actually, polio specialists have warned me that breathing
substantial amounts of oxygen can possibly be dangerous for me, decreasing my
respiratory drive. My primary problem is underventilation. If I am adequately
ventilated, my oxygen saturations are fine. Yet, during each of my last three
hospitalizations, professionals have tried to give me oxygen "to help me
out." Some respiratory therapists thought my ventilator was a CPAP device,
a machine that uses a constant stream of air to keep breathing passages open.
Others thought that my ventilator was set to deliver breaths only when I
triggered them by my own breathing. Neither is the case. I have central apnea
as well as the obstructive type. To avoid hypoventilation, my ventilator pushes
air into my lungs at regular intervals. Although I can breathe well during the
day, I let the ventilator breathe for me at night. When I tried to correct
misperceptions about my respiratory set-up, some therapists insisted they knew
best and argued with me about how my ventilator functioned. One therapist
allowed that I might be right about the current set up, but that the ventilator
settings should be changed to withhold breaths unless I triggered them first.
This therapist's response stands out in my mind because I realized, part way
through the conversation, that he was underestimating my respiratory
insufficiency because he thought I was too "with it" to need full
cycled ventilation. Again, it was difficult for his imagination to encompass
both facts at the same time-that I was a fully engaged, competent agent and
that I needed to use a ventilator each night to stay alive.
ALIENATION, DEVALUATION, AND
BURDENSOMENESS
I offer this level of detail about
my personal experiences to flesh out what vulnerability means for many people
with disabilities in healthcare settings. Several factors construct our
vulnerability. One is the "alien" factor. When people with
disabilities enter the medical system, we often feel like unexpected aliens
whom no one understands. Our efforts to communicate who we are and what we need
are unsuccessful, and we experience a disquieting sense of isolation. During
all three of my recent hospitalizations, I met only a couple of hospital
professionals who had any familiarity with people who live with disability.
They were the only ones who seemed to expect me to have a life.
A related factor concerns judgments
about quality of life. As medical and public discourse expands about
"death with dignity," it seems increasingly permissible to question
whether some forms of living are too burdensome, too hopeless, or too
unaesthetic to merit support. This rush to judgment about "how awful"
it is to have incurable impairments, in a society with decreasing tolerance for
human limitations and imperfections in general, sends a message that our lives
are untenable. Media stories of nonsentient or suffering people helplessly
tethered to tubes and machines are the horror tales of our age. Although no one
pities the scuba diver or astronaut who uses a breathing device, ventilators
used quite comfortably by people with respiratory insufficiency are viewed as
the definitive mark of a subhuman existence. If only Nike or Apple would launch
an advertising campaign to rehabilitate that image!
In addition to our alienation and
devaluation in medical settings, we are now dealing with managed care fallout.
When medical care is rushed and rationed, disabled people become exceedingly
inconvenient. We need help, we need equipment, and we need time. It is so much
easier to move in and out of our hospital rooms if there is no conversation. It
is easier to deal with our daily needs if we can either care for ourselves or
stay in bed immobile. It is the in-between nature of disability that is so
troublesome. We aren't independent but we aren't passive. We aren't getting
well but we aren't getting on with dying. We require engagement; we need
assistance and respect at the same time. We are too demanding. From a purely
pragmatic standpoint, we don't fit in.
This is not to imply that disabled
people are alien, devalued, and resented only in the medical setting. We feel
this in the larger world, too, but in healthcare environments, the dynamics
intensify. When we seek health services, we enter a highly structured system
with established protocols and power hierarchies that can strike vulnerability
into the hearts of most consumers. This milieu can be especially daunting for
people with disabilities because we have struggled so hard to control our lives
despite all the social barriers we encounter. In other words, we have more to
lose than most people when we enter dominating systems, especially when those
systems are insensitive to our delicately balanced strategies for
self-determination. For example, another disabled man I know was forced by
hospital staff to stay in bed during mealtimes. Although he could eat on his
own when seated at a table, in bed he had no way of positioning his partially
paralyzed arm so he could feed himself. When he asked for help, the nursing
staff reported that he was becoming more dependent and might need nursing home
care. Fortunately, his wife was an occupational therapist and could clearly
perceive the cycle of his iatrogenic disempowerment.
Experiences such as these illustrate
not only that disabled people may feel vulnerable in medical settings, but that
they are vulnerable. This man might have ended up in an institution rather than
going home, were it not for the intervention of his wife. I could have had my
ventilator wrongly reconfigured by health professionals who did not understand
my condition, were it not for my vigilance and ability to argue my case. Those
are close calls. It is not much comfort to know that mistakes like this usually
flow from the best intentions. They still threaten our bodily and psychological
integrity.
Even when the threats are not so
concrete, they can be potent. My family and friends know me to be an assertive,
even powerful person. I have written and presented work on positive identity
for people with disabilities. Moreover, I have conducted research on health
professionals' attitudes toward people with disabilities and have offered
recommendations to disabled people about how to navigate health systems. Yet,
even with all of this fortifying me, I still feel completely demoralized within
hours of entering most healthcare environments. The attitudes and actions
surrounding me there tell me that I am too disabled to live. Although I feel
robust and even fairly healthy around people who are familiar with my way of
life, in the hospital I am made to feel fragile, critical.
VULNERABILITY IN THE CONTEXT OF
END-OF-LIFE CARE
Against this backdrop, it makes
sense that many people with disabilities are leery of endof-life discussions.
When I was in training as a clinical psychologist, I was taught that there is a
difference between fear and anxiety. Supposedly, fear is based on an
identifiable source of perceived danger, whereas anxiety has no clear source
and is, therefore, diffuse and difficult to contain. When ethicists and others
analyze disabled people's opposition to the right-to-die movement, they seem to
reduce that opposition to a matter of anxiety. They recommend working on ways
to reassure disabled people, and to build trust between them and their health
professionals, as though the problem is a diffuse concern with no direct link
to real danger. This analysis fails to acknowledge that disabled people are in
fact fearful, not anxious. It glosses over the identifiable threats to our
lives that we stare down daily in the medical system and in greater society.
Palliative care specialists who wish
to address the needs of people with disabilities at the end of life, can begin
by learning more about the socially created hazards of disability that instill
realistic fears. There is a disability studies literature and a body of work
from the disability rights resistance to "death with dignity" that
describes and analyzes the basis of these fears (e.g.,4-10). This information
is a primer in cultural competency in disability and should be required reading
in health professional training. Unless doctors know more about the social
context of our lives, they will not have the necessary tools to decrease our
vulnerability and to interpret, in context, the stated end-of-life wishes of
their patients with disabilities.
COMPLEXITIES OF PALLIATIVE CARE FOR
PEOPLE WITH DISABILITIES
The complexities of this endeavour
are undeniable. For example, whom do we include in the category "people
with disabilities" when considering end-of-life care? Some right-to-die
advocates feel that people who have been disabled most of their lives have
little in common with people who acquire disabilities only at the end of life
as the result of aging or terminal illness. In fact, some argue that the
physical limitations brought on by terminal conditions should not be considered
disabilities at all. However, if you understand the social dynamics of
disability, the common ground shared by these two groups becomes clearer.
The Americans with Disabilities Act
defines disability as a physical or mental impairment that substantially limits
one or more major life activities, such as caring for one's self, performing
manual tasks, walking, seeing, hearing, speaking, breathing, learning, and
working. This definition applies to many formerly nondisabled people as they
reach the end of life. Because of pain, weakness, sensory impairment,
coordination problems, and other physical changes associated with terminal
illnesses, many dying people will experience the kind of limitations that
constitute disability. It is at this point that many will become concerned
about needing help and burdening others, social abandonment, lack of access to
gratifying activities, loss of important roles and status, and living in an
aesthetically unacceptable state. These concerns, grounded in social relations
and cultural values, are similar to the concerns of others who acquire
disabilities at any point in the lifespan, including the teenage athlete who
loses his leg in an accident and feels devoid of value, the young mother who
learns she has multiple sclerosis and worries that she will lose her husband
and children, and the older man who is diagnosed with progressive blindness and
anticipates a life of social and sensory isolation. All must confront both
their physical limitations and the negative social responses to those
limitations that can turn them into hopeless losses. In fact, many people with
disabilities find that, rather than distinguishing disability from terminal
conditions, the public often conflates "incurable" and
"terminal," associating disability with dying or a fate worse than
death. This perception underlies such common public commentary as, "If I
were like you (blind, paralyzed, reliant on a wheelchair or ventilator), my
life would be over."
There is no denying, however, that
despite commonalities across various experiences of disability in our society,
including disability caused by terminal illness, there are also qualities that
distinguish them. Certainly, when disability is experienced for the first time
at the end of life, there is less time to adapt, more concurrent losses to
process and, arguably, fewer options to offset limitations than when disability
occurs earlier in life. On the other hand, the intensity of interpersonal
connection and transformation of values that may emerge in the dying process
can contribute significantly to a more positive and meaningful disability
experience. The important point is that many of the concerns expressed by
individuals at the end of life are disability-related and, like most problems
of disability, they have a strong social aspect that can moderate or exacerbate
the experience of physiological loss.
In Oregon
Palliative care specialists can help
their patients address these practical and existential concerns by recognizing
them as disability-related concerns. The next step is learning about the
options available to address these concerns, because until health professionals
know that there are meaningful alternatives, they will not be able to help
their patients believe there are alternatives to hastened death. Disability
rights advocacy groups can link physicians to a wealth of information to share
with patients and their families. Meaningful options increase power and
decrease the unnecessary vulnerability that may lead to desperate decisions.
Another complexity that palliative
care specialists will confront in working with people with disabilities is the
question: when is it appropriate for people with disabilities to receive
palliative care services? If people with extensive disabilities are viewed
prima facie as suffering and tenuously viable, the next step may be premature
withdrawal of measures that extend their lives. Some disability advocates are
concerned that palliative care services, such as hospice, may become the new
dumping ground for persons with brain injuries, developmental disabilities,
high-level quadriplegia, progressive neuromuscular disease, and other
supportintensive disabilities. With adequate support, individuals with such
conditions can live a long time-too long, in the opinion of a significant
sector of the public. Without adequate support; they will die. The idea that
such conditions can be framed as terminal or hopeless is ominous. Although many
people with disabilities oppose aggressive treatments imposed on them to fix or
cure their impairments with little hope of success, most want access to a full
array of healthcare options and other supports to enhance and extend their
lives. If palliative care becomes associated with a narrowing of those options
for people with disabilities, it will increase disabled people's distrust of
end-of-life care. More important, such practices will increase disabled
people's vulnerability to further devaluation and discriminatory treatment.
One more complexity has to do with
the primary focus of palliative care: the alleviation of suffering. Some might
say that suffering is a highly personal matter, but in another sense,
suffering, like disability, is a highly social matter. The public generally
equates disability with suffering. Because I have physical limitations, need
help from others, and use devices such as a wheelchair and ventilator, many
observers perceive me as a sufferer. I do not draw the same conclusion.
Ironically, their prejudgments cause me more suffering than my impairments do.
Having suffering incorrectly attributed to us when we are simply living our
lives differently is a quintessential disability experience. A related
experience is being harmed by people who think they know what we need and are
trying to help. Sometimes I think disabled people have been harmed much more by
well-intentioned individuals than by malicious ones. Unfortunately, that list
may include family members, counsellors, teachers, health professionals, and
others in our support system. Even our loved ones often pity and misunderstand
disability.
It is important for palliative care
specialists to develop sophistication about suffering in the context of
disability. This starts by challenging the assumed link between bodily
impairment and suffering. After all, disabled people's impairments are rarely
curable. If suffering always followed from impairments, disability would be a
hopeless state indeed. Despite public opinion to the contrary, however, most
people with disabilities report as much satisfaction with life as anyone else
(6). When they are dissatisfied, the reasons are often social rather than
impairmentrelated. As already suggested, socially induced suffering calls for
improvements in social arrangements and relationships.
There is no denying that some
impairments cause physical and emotional suffering. Fatigue, pain, weakness,
and functional limitation can be intrinsically difficult. These experiences
call for compassionate and informed medical care, and this is where palliative
care can shine, potentially. However, acknowledging disabled people's right to
treatment for impairment-related suffering does not imply that suffering
necessarily diminishes the value or quality of one's life. Nor does it imply
that remedies for physical suffering must be always medical. People with
disabilities often embrace a range of nonmedical modalities, including work,
intimacy, activism, expressive arts, and peer support. All available options to
improve life should be considered.
CONCLUSION
It is difficult for most people to
believe that life with an extensive disability can be anything but suffering,
and that suffering can be anything but dehumanizing. Perhaps, along with
tolerance for imperfection, the public spirit has lost some of that
down-to-earth courage in the face of human difficulties that carried previous
generations through very hard times. I have also noticed how narrow the public imagination
has become about what makes life valuable-so unimaginatively narrow that it
cannot seem to encompass those two realities-disability and full
humanity-simultaneously.
Physicians are members of society
who occupy a powerful place in the lives of people with disabilities.
Hopefully, they can shed the dangerous misconceptions about disability that
permeate society and create disabled people's vulnerability. To address
disabled people's suffering in a responsive and responsible manner, palliative
care specialists must understand and address the social side of disability. The
ideal of palliative care at its life-affirming best has potential for
partnership between physicians and people with disabilities who face end-oflife
decision making. Perhaps, under the right circumstances, individuals with
disabilities, whose conditions have eluded cure, could be well served by
physicians for whom cure is not the goal. For this potential to be realized,
however, palliative care specialists will need to develop a wide imagination
about the fullness of living with disability, and then convey that view to
their patients through the end of life.
Date received, April 19, 2006; date
accepted, June 29, 2006.
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[Reference]
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REFERENCES
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2. Scott RA. The Making of Blind Men.
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3. Shapiro JP. No Pity: People with
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4. Russell M. Beyond Ramps : Disability
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5. Coleman D. Withdrawing life-sustaining
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6. Gill CJ. (2000). Health professionals,
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8. Marks D. Disability: Controversial
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9. Michalko R. The Difference That
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10. Morris J. Pride Against Prejudice:
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11. Gill CJ. The false autonomy of forced
choice: rationalizing suicide for persons with disabilities. In: Werth JL
(ed). Contemporary Perspectives on Rational Suicide. Series in Death, Dying,
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[Author Affiliation]
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CAROL J. GILL, Department of Disability
and Human Development,
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[Author Affiliation]
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Gill, Carol J., PHD
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Department of Disability and
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Human Development
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(MC 626)
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