03 Must Disability be Invisable
Description
This article is from the Essays on the topic of Women and Disability.
03 Must Disability be Invisable
The Meaning of Disability for Women
by Sharon Dale Stone
Those who cannot conceal their disabilities are encouraged to
remain out of sight.
I once complained to my mother about how different I felt on
account of my (largely invisible) disabilities, and she pointed
out to me that practically everyone has something wrong with
them. As a case in point, she drew attention to the large number
of people suffering from poor eyesight. That silenced me for a
while, but lately I have begun to ponder what it means to
identify as disabled. If disability is so widespread that it is
the individual with the perfectly functioning body who is truly
remarkable, then why is it that we speak of people with
disabilities as though they constitute a minority?
For some time now I have been grappling with the question of what
it means for a woman to identify as disabled; I still find that
the questions are more numerous and come more easily than the
answers. I don't pretend to have definitive answers to the
question of what disability means for women, but I do think that
the following ideas suggest a way into the problem and bear
serious consideration.
References to physical or mental disabilities call attention to
the body. This is because no matter how diligently our culture 1
works to convince us that mind and body are separate, they are
not separate. Indeed, the intimate relationship between mind and
body was explicitly recognized in the nineteenth century as
compulsory schooling for children was being promoted (Prentice,
29-30). At the time, the school promoters argued that one must
train the body in order to train the mind. It is for this reason
that physical education was introduced into the curriculum and
has remained there to this day. In the nineteenth century, these
men did not argue that the mind and body were of equal value;
they were quite adamant that the body was inferior. Moreover,
their recognition of the intimate relationship between mind and
body was used primarily to justify the assumption that someone
with a feeble body must therefore have a feeble mind.
Contemporary culture has retained this noxious assumption, yet
seems to have forgotten the premise upon which it was once
based: that mind and body are not separate.
When thinking about disability, it is useful to notice that in
our culture, notwithstanding the fleeting recognition of
mind/body unity that appears every now and then, the theoretical
separation of mind and body is very old. Equally old is the idea
that the mind is more valuable than the body. Today these ideas
are increasingly being questioned, yet our culture continues to
assume that mind and body may be regarded as separate and
unequal. As Lois McNay says:
This [mind/body] dualism privileges an abstract, prediscursive
subject at the center of thought and, accordingly, derogates the
body as the site of all that is understood to be opposed to the
spirit and rational thought, such as the emotions, passions,
needs (126).
Thus, our culture encourages us to "rise above" and transcend the
body, to pretend that it does not really exist. Much of this, of
course, is at bottom tied to a fear of death, and can be seen as
an attempt to deny the inevitability of death.
Nevertheless, we are not encouraged by our culture to pay
attention to whatever aches and pains we may suffer. Rather, we
are encouraged to ignore them and go about our business as
though our bodies had nothing to teach us. Indeed, it is because
our culture holds the body in such contempt that we are able to
find ourselves living in a world that is structured, as Susan
Wendell has pointed out, "as though everyone can work and play at
a pace that is not compatible with any kind of illness or pain"
(111). Those who are best at denying the limitations of the body
reap monetary rewards (e.g., the workaholic executive, the super
mom, the sports athlete), while those who either
refuse to ignore or are unable to ignore their bodily
limitations reap no rewards from our culture.
Our culture does not pretend that no one ever suffers. Everyone
is allowed, on occasion, to have a headache, an upset stomach, or
the common cold. But no one is allowed to let such ailments
interfere with daily tasks. Our culture admires those
hardworking individuals who, despite sniffles, bleary eyes and a
temperature of 101 degrees Fahrenheit, go to work and get things
done. Similarly, our culture admires the individual who has, for
example, a persistent pain somewhere in the body yet refuses to
go to a doctor. Such individuals, our culture
implicitly asserts, are to be valued for an ability to rise above
the body and indeed, ignore it. Our culture teaches us that "a
pain in the neck" may be felt physically as well as recognized
metaphorically, but "a pain in the neck" ought to be regarded as
a minor inconvenience to be overcome, not something that puts a
stop to the achievement of goals.
In this manner, disability becomes unspeakable. Those who dare to
call attention to their bodily "imperfections" are shunned. Their
demonstrated inability or refusal to "rise above" the body is
taken as evidence of their inferiority, and they are not taken
seriously. Those who cannot conceal their disabilities are
encouraged to remain out of sight--whether in an institution or
in a private home matters not, so long as the general population
does not have to deal with their presence.
Those who can conceal their disabilities, however, are welcome to
mingle with the general population, but only to the extent that
they are successful in concealing their disabilities. Thus, the
old woman with arthritis is allowed on the street, but she is
assumed, because of her advanced age and the difficulty she may
have with walking, to be incompetent. She can be easily dismissed
because of her inability/refusal to conceal her bodily
"imperfections." Her age alone is enough to make her "other"
(Posner) and so, whatever disabilities she might have acquired in
the process of living may also be considered "other." To the
extent that young women take notice of her, they may comfort
themselves that arthritis is a disease of the old, and this
thought prevents them from identifying with the old woman.
Arthritis, however, is not a disease exclusive to the old, and is
often present in the bodies of children. What happens when it is
a young woman who has arthritis? If a young woman complains of
not being able to walk far because of arthritis, she too is
looked down upon. No one can use her age to dismiss her, but she
is looked down upon because she is seen to be giving in to the
infirmities of the body. She is regarded as inferior in her
inability to withstand pain. She may be told that she must keep
moving, for it is only with continual movement that the joints
may stay oiled and supple, she may be told by someone else that
she is not exercising properly, and she may be told by still
another person that if she pays too much attention to her body,
she'll never get anything done.
In this manner, the young woman with arthritis is encouraged to
"normalize" her suffering (Abberley, 17). She is asked to
participate in maintaining the huge silence surrounding the
existence of disabilities in young bodies. Suffering is part of
the human condition, she may be told philosophically, and so
there is nothing unusual about her pain. From this perspective,
she has no cause for drawing attention to her "imperfect" body.
She should get on with life, grin and bear it. Above all, she is
not encouraged to identify herself as disabled.
In our culture, disability is equated with incompetence and
inferiority. The woman (or, for that matter, the man) who says
she is disabled is understood to be announcing her own
incompetence and inferiority. It is on this basis that well-
meaning friends may counter her announcement of disability with
the statement, "But I don't think of you as disabled." Intended
as a compliment, the statement is meant as an affirmation of her
ability to participate in social life. Sometimes, the statement
is uttered in an attempt to deny that the woman who says she has
disabilities has any limitations beyond those that are
considered normal, and thus the statement is meant to deny her
ability to define her own reality. At other times, the statement
is uttered as an affirmation of the essential incompetence and
inferiority of disabled people.
The body is not something with which women are trained to feel
comfortable. In our culture, women learn that their value
resides in the attractiveness of their bodies. It is small
wonder, then, that even women who are conventionally attractive
are continually alert to the slightest of bodily
"imperfections." And it is small wonder that we have a huge
cosmetics industry that caters to women who are terrified of
drawing attention to the imperfections which they perceive in
their bodies. In our culture, women learn at an early age that it
is incumbent upon them to do their utmost to conceal their
"imperfections." Women learn that there is nothing about an
"imperfect" body to celebrate, such a body is cause for shame.
Perhaps the lengths to which women in our culture will go to deny
the widespread existence of disabilities can be illustrated with
the following anecdote.
Several years ago, I read an article about a lesbian
organization in which I used to be active. Written by Becki Ross,
the article was based on interviews with a number of
lesbians who had been involved in the organization. Of
everything that was said in the article, one particular line has
stuck in my mind. That is, Ross discussed the kinds of women who
used to attend events there, and stated that: "No one that I
interviewed remembers ever seeing a disabled lesbian" there
(Ross, 81). Had I been interviewed, Ross would not have been able
to write that line, but what is more interesting to me is that I
was not the only lesbian there who was disabled.
I note that in the article Ross did not conclude that there were
no disabled lesbians there, only that her informants do not
remember any. This gives me pause for thought, and prompts me to
wonder exactly what counts as being disabled. I wonder if one
must sit in a wheelchair in order to be recognized as disabled,
or at least use crutches for walking. If these highly visible
pieces of equipment are required in order to be recognized as
disabled, then it is not surprising that no one remembers seeing
lesbians with disabilities at that organization, because
meetings and social events were held in a very inaccessible
building. But as anyone with any knowledge about disabilities
knows, there are all kinds of disabilities and many of them are
not obvious. It would have been more correct for Ross's
informants to have stated that they did not see any lesbians with
disabilities that were so visible they could not be hidden.
Although I have been disabled since childhood, either my
disabilities are not usually apparent or else others assume that
any clumsiness on my part or any disinclination to do certain
things can be ascribed to some amorphous strangeness. For a very
long time, I was not inclined to enlighten others about my
disabilities and in fact, worked hard at trying to forget that
they are part of who I am. Certainly, I was not interested in
identifying as disabled during the period that Ross wrote about
in her article, and I have written about this elsewhere (Stone).
Yet, I have to wonder why the lesbians who Ross interviewed
assumed that disabilities are always visible, or at least that if
they had seen a disabled lesbian, they would have recognized her
as such.
Off the top of my head, I can think of two other lesbians with
invisible disabilities who were often present at that
organization's meetings and/or events. One had diabetes and
another was mobility impaired. These two were lesbians that I
personally knew about, and I did not know about them because they
went around announcing their disabilities to one and all.
Regarding the lesbian with diabetes, I only knew about her
because I heard her speak at a meeting for women with diabetes
which I had attended with my lover who was diabetic and by then,
blind as well (my lover had also been to the lesbian
organization in question, but was not actively involved).
Regarding the lesbian who was mobility impaired, I knew about her
because she told me one evening when the two of us were trading
personal stories that we did not usually talk about. Then, there
was also the lesbian who was epileptic and had a seizure in front
of a group of us. My point is that I am sure that there were all
kinds of lesbians who had disabilities that were not usually
apparent and which, like me and others I knew about, they did not
talk about.
This is not intended to blame those who don't remember seeing any
disabled lesbians for their lack of awareness, and it is not to
blame those of us who did not speak up about our
disabilities. All of us were doing nothing more than conforming
to and reinforcing the cultural myths about disability with which
we were familiar. By not noticing or denying the presence of
lesbians with disabilities, we were doing what women in our
culture are supposed to do (deny the existence of bodily
"imperfections").
We did not challenge the theoretical separation of mind and body,
and we did not challenge the belief that disability must always
be immediately visible. That we were unable to break out and
challenge cultural myths about disability is testament to the
strength of those myths. Ultimately, this points to one more area
where feminists need to do a lot of work.
Sharon Dale Stone, who teaches at the Simone de Beauvoir
Institute, is a member of Action des Femmes Handicapees de
Montreal.
1 Where the essay refers to "our culture," this should be read as
shorthand for the dominant culture of late twentieth century
North America.
References
Abberley, Paul. "The Concept of Oppression and the Development of
a Social Theory of Disability." Disability, Handicap &
Society 2 (1): 5-19.
McNay, Lois. "The Foucauldian Body and the Exclusion of
Experience." Hypatia 6 (3): 125-39.
Posner, Judith. "Old and Female: The Double Wham my." Aging in
Canada. Victor W. Marshall, ed. Toronto: Fitzhenry & Whiteside
Limited, 1980. 80-87.
Prentice, Alison. The School Promoters. Toronto: McClelland and
Stewart, 1977.
Ross, Becki. "The House That Jill Built: Lesbian Feminist
Organizing in Toronto, 1976-1980." Feminist Review 35 (Summer
1990): 75-91.
Stone, Sharon Dale. "Notes Toward a Unified Diversity." The More
We Get Together: Women & Disability. Houston Stewart, Beth
Percival and Elizabeth R. Epperly, eta. Charlotte town: synergy
books, 1992. 21-28.
Wendell, Susan. "Toward a Feminist Theory of Disability."
Hypatia 4 (2): 104-124.
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