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09 Women, Disability, El Salvador




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This article is from the Essays on the topic of Women and Disability.

09 Women, Disability, El Salvador

Snapshots from the Margin Women With Disabilities in El Salvador

by Patricia Pardo-Demiantschuk

Women born with disabilities are shunned, imprisoned in their
homes, sexually and physically abused, and left to live their
lives at the discretion of the economic resources of the family.

Right from the beginning of my trip to El Salvador I felt fear,
not so much of the destination but of the journey itself. It has
been my experience that, as a person with a visual impairment,
travelling on my own has always required a great deal of
patience and a willingness to educate. Retaining my sense of
independence and autonomy while requesting "special assistance"
has always been a real struggle for me. l shudder as l recall my
conversation with the airline porter who met my flight in Miami.
It was his responsibility to assist passengers who require
"special assistance" and so it took me ten minutes to convince
him that, as a blind person,I did not need the wheelchair, but
simply a guide to the next gate! Ultimately, the most important
lesson I learned was that facing my fears, challenging them, and
finally embracing them is the only way to move beyond them.

Certainly, fear played a major role in the lives of many of the
consumers I met. I remember feeling incredibly helpless as
consumer after consumer told of their life experience with
disability. People with disabilities were struggling to stay
alive, and as their country wrestled with the overwhelming
problems experienced by most "third world" countries, it was
blatantly apparent that the issues and concerns of people with
disabilities would not soon become top priority. My helplessness
soon turned to anger, and then confusion. What right did I have
to make judgements ? How could I discuss and share the
philosophies of consumer control, cross-disability, advocacy, and
empowerment when most of the consumers I spoke to were
struggling to stay alive? What could l know about being disabled
in comparison?

Under my confusion, however, was pride and joy. Pride in the
knowledge that all of the people with disabilities were finding
their own solutions and making a difference for themselves and
for their communities. Joy in the realization that peer support
and consumer control transcends social, cultural, economic, and
linguistic barriers. Despite fear, consumers came together to
share themselves, their knowledge, their experiences, their
concerns, and their solutions. And so l had come full circle. I
saw my own struggle as a person with a disability mirroring the
struggle of other consumers. I had gone to El Salvador expecting
to meet strangers and instead found friends.

Like a pheonix rising from the ashes, El Salvador is a country in
the midst of rebirth and reconstruction. The years of war,
violence, and terrorism have taken their toll not only
economically in the loss of millions of dollars worth of real
estate investments and business, but also in the decimation of
its youth. The country is racked by the legacy of war. Of the
seven million Salvadorean citizens, the Associacion Cooperativa
Del Gruppo Independente Rehabilitacion Integral (ACGIR)
estimates that close to fifty thousand people, including the
soldiers from both sides and civilian casualties, were rendered
disabled.1 Many thousands more were left homeless and
traumatized by the extreme violence which was the civil strife in
El Salvador.

Government and non-government rehabilitation resources, minimal
at best and dedicated to the rehabilitation of the disabled
community comprised of accident, illness, malnutrition, and
genetics, were left fragmented, underfunded, and unable to meet
the demand of the disabled veterans.

Issues and concerns of people with disabilities take a very low
priority. No financial support (as in disability pension) exists
for those who are injured or become ill while employed. A small
disability pension ($35 per month) is available during the time
of rehabilitation. Persons born with disabilities have received
no government support whatsoever. Government and non-government
service providing agencies work with limited funds and with
outdated technology. The average level of education completed by
persons with a physical disability is grade five. Blind and deaf
children manage to complete, on average, grade one, as
overwhelmed teachers operating in already overtaxed conditions
find themselves completely unprepared or indeed unable to
integrate sensory impaired children into the classroom. Special
education resources are close to non-existent. Blind and deaf
children who attend the few available centres of rehabilitation
leave them after grade three to become lost in the overcrowded
public school system. Deaf children suffer particular
discrimination as sign language is totally unaccepted as an
alternate form of communication. Deaf children are forced, with
physical blows, to vocalize and mimic spoken language with
little concern as to the level of conceptual understanding.

In the midst of this disability dynamic, women with disabilities
face four levels of discrimination. The first is discrimination
on the basis of gender. The second is the barrier of poverty and
illiteracy. The third is discrimination on the basis of
disability. The fourth is the discrimination of machismo.

Although more than half the disabled community (not veterans of
war) are women, few are represented in consumer and service
providing organizations. Fewer still have any direct input into
the development of options and services. Women born with
disabilities are shunned, imprisoned in their homes, sexually and
physically abused, and generally left to live their lives at the
discretion of the economic, emotional, and physical
resources of the family. Unwanted pregnancies as a result of rape
occur often. Intentional abortions brought on by beatings and
easily accessible sterilizations are commonplace. In law, deaf
women can have their children removed from their care
solely as a result of their disability. Women with developmental
disabilities, any type of learning disability, epilepsy, and
cerebral palsy experience the most extreme forms of abusive
discrimination.

Although women who are disabled later in life face many of the
same barriers as women who are born with a disability, some other
issues arise. Almost always, women disabled later in life are
abandoned by their husbands, and left with the care of the
children. A corresponding loss in social and economic status
occurs. Few ever remarry, as women with disabilities are
perceived as "un-feminine" and thus undesirable.

As no financial assistance exists, most women are left to fend
for themselves with whatever family support is available. Often
the entire family moves into the woman's parents' home where
accommodation is often limited. Children leave school to find
work to support the family. Few rehabilitation options exist and
so, without a husband and limited options for work, the woman
disabled later in life is left destitute, and stripped of
whatever status and security her past life held.

Betty

Betty has epilepsy. Early in her life, with the onset of her
first seizure, she found herself imprisoned in her house. She was
not allowed to leave except to attend school to the fifth grade.
At the age of 16, her stepfather raped her and left her pregnant.
Her mother, not knowing who the father was, blamed her daughter
for the pregnancy. In her anger, embarrassment, and frustration,
she pelted her daughter with blows so severe that they instigated
the termination of the pregnancy. Betty's
mother, wishing to control her daughter's "promiscuity" had her
daughter sterilized shortly after the premature termination of
the pregnancy.

Betty is now twenty-seven. She does not realize that she has been
sterilized. She is engaged to be married and is under
constant fear and anxiety that once married she will again
become pregnant and so invite the blows of her mother. So she
postpones the date of her marriage, living with her mother and
working in a sheltered workshop which caters primarily to
persons with cerebral palsy.

Miriam

Miriam was affected by the polio virus when she was quite young.
She has lived almost all her life in a small rural village with
her mother, just outside San Salvador. Miriam's home is not
accessible. Every time Miriam needs to leave her room, for
example to use the outhouse facility, her mother must lift her
out of her chair and carry her to the washroom. Miriam spends
most of her days sitting alone in the house, a prisoner of her
disability.

At twenty-seven, Miriam heard of a ceramic cooperative in San
Salvador run by people with disabilities. The only place in San
Salvador she could find to live in which was both economically
and physically accessible was a residential institution for
persons with cerebral palsy. Life in the institution was totally
controlled and it was not long before she was desperately
looking for another place to live. She finally found reasonable
work and a more-or-less accessible apartment. Shortly
afterwards, her mother began to harass her for having abandoned
her until finally, overwhelmed with guilt, Miriam left her job
and apartment to go back to her village to care for her mother.

Cecilia

Cecilia had both legs amputated as a result of an industrial
accident at the age of 17. Her family was poor and had limited
options with respect to accommodation and support. Somehow
Cecilia would have to work. She was able to find a spot in a
sheltered workshop run for persons with cerebral palsy. Cecilia
was allowed to keep only a small portion of her earnings, the
rest went into the family coffers.

One night, shortly after Cecilia started working, one of her
cousins raped her, and left her pregnant. Upon discovering
Cecilia's condition, her mother beat her with such severity that
Cecilia lost her baby. The same sequence of events occurred twice
before Cecilia's mother had her sterilized. The sexual abuse
continued after Cecilia's sterilization.

Ruth

Ruth has lived all her life with arthritis, but she has managed
to cope, supporting her family by working both outside and
inside the home. Three years ago, her arthritis deteriorated to
the point where a hip replacement was required. Three months
after her operation, her husband was gone, leaving her with the
responsibility of three children. Her disability now made work
impossible, and without support from her husband, she was forced
to sell all her possessions and move in with her seventy-four
year old mother. At that point her life changed totally. The
whole family laboured under great stress, packed into two rooms,
accommodating a new disability and the needs of an older woman.
As the stress mounted, animosity grew towards Ruth, as the
instigator of the family's changed state.

Two of the three children left their studies to earn income for
family expenses. Ruth found herself falling deeper and deeper
into depression. Her disability, the loss of her economic
position, her change in status, and most of all, the guilt she
felt for all that had befallen herself and her family, caused her
to believe that her husband had every right to abandon her.

With increasing despair, Ruth began the slow process of
physiotherapy subsidized by small disability pension. She
finally had the opportunity, through her physiotherapy program,
to attend a functional literacy seminar for women with
disabilities. This was Ruth's first encounter with other women
with disabilities. Here she met women, who despite their
disabilities, were living their lives to the fullest. These
observations had a great impact on Ruth. By simply knowing other
women with disabilities and being able to share experiences, Ruth
received the support she needed.

Patricia Pardo-Demuantschuk was born with a visual condition
known as macular dystrophy. She is currently the Executive
Director of the Independent Living Resource Centre of Calgary and
a member of the Board of Directors for the Alberta Committee of
Citizens with Disabilities and the Alberta Advisory Council on
Women's Issues. She has an MA. in Educational Psychology from the
University of Calgary.

1 Statistics cited throughout this article were obtained in
personal interviews with representatives from the ACGIR in El
Salvador.

 

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