Snapshots from the Margin

By Patricia Pardo-Demiantschuk

(Pat is the Executive Director of the Independent Living Resource Centre in Calgary. In October of 1992, she visited El Salvador as COPOH’s consultant for a women and literacy project. Her report is as bleak as it is insightful. This story begins with some profiles of life as those living in the margins all too typically experience it firsthand; all names are fictitious.)

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 sterilized shortly after the premature termination of the pregnancy. It is common practice (and easily accessible) to obtain sterilization for women with disabilities.

Betty is now 27. 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 invite more blows from 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 lived with her mother for the first 27 years of her life in a small rural village just outside San Salvador. Her only lifeline to existence was the support, care and love given by her mother.

Miriam’s home was not accessible. Every time Miriam needed to leave her room -- to use the outhouse facility, for example -- her mother would lift her out of her chair and carry her. The village where Miriam and her mother lived was very poor and inaccessible. Miriam spent most of her days sitting alone in the house, a prisoner of her disability. Her literacy level was quite low; about grade two.

At 27, Miriam heard of a ceramic co-operative run by people with disabilities in San Salvador. When she finally went there to work, the only place she found which was both economical and physically accessible was a residential institution for persons with cerebral palsy. Since life there was totally controlled, 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. Then her mother began harassing her, filling her with guilt for having abandoned her, blaming her daughter for lost opportunities and the loss of her husband until, finally, overwhelmed with guilt, Miriam left her job and apartment to go back to the village and care for her mother.

CECILIA
At the age of 17, Cecilia had both legs amputated, the result of an industrial accident. Her family was poor, with limited accommodation and support options. Somehow Cecilia would have to continue to work. Through hospital contacts, Cecilia gained a spot in a sheltered workshop controlled by a residential institution for persons with cerebral palsy.

There, Cecilia found work and the loan of a wheelchair (only available to her during the day). She received only a small portion of the money received from the sale of her work, the remainder going into the family coffers.

One night, shortly after Cecilia started working, one of her cousins raped her, leaving her pregnant. Her mother, upon discovering Cecilia’s condition, beat her with such severity that Cecilia lost her baby. The same sequence of events occurred twice more before Cecilia’s mother had her sterilized. The sexual abuse continued after Cecilia’s sterilization. It is not known if this situation has ever been resolved.

Although women who acquire disabilities later in life face many of the same barriers as women who are born with a disability, some other issues arise. Almost always, women who acquire disabilities later in life are abandoned by their husbands -- usually with no financial support -- and left to care for the children. A corresponding loss in social and economic status occurs. Few ever remarry. Women with disabilities are perceived as "unfeminine", thus undesirable and non-marriage material.

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 may be limited. Children leave school to find work to support the family. Few rehabilitation options exist, so without a husband and with limited work options, the woman who has acquired a disability later in life is left destitute, stripped of whatever status and security her past life held.

And then there is the situation of El Salvador in the 1990s.

Like the phoenix rising from the ashes, El Salvador is a country in the throes 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 state investments and business, but also in the decimation of its youth. The country is racked by the legacy of war. Of the seven million citizens of El Salvador, it is estimated that close to fifty thousand, including soldiers from both sides and civilian casualties, were left with disabilities. Many thousands more were left homeless and traumatized in the course of the civil strife.

Government and non-government rehabilitation resources were minimal at best. Naturally, they were dedicated to the rehabilitation of the disability community as it is comprised of accident, illness, malnutrition and genetics. Such organizations were left fragmented, underfunded and unable to meet the demand of veterans and other war victims with disabilities.

Issues and concerns of people with disabilities are given a very low priority in El Salvador. No financial support (as in a disability pension) exists for those who are injured or become ill while employed. A small disability pension ($35.00 per month) is available during the time of rehabilitation. Persons born with disabilities receive no government support whatsoever. Government and non-government service-providing agencies work with limited funds and with outdated and limited technology and systems.

The average education of persons with a physical disability is Grade Five. On the average, children who are deaf or blind manage to complete Grade One; overwhelmed teachers, operating in already overtaxed conditions, find themselves completely unprepared to integrate children with sensory impairments into the classroom. Special education resources are close to non-existent. Children who are deaf or blind attend the few available centres of rehabilitation, then leave them after Grade Three to become lost in the overcrowded public school system. Children who are deaf experience particular discrimination because sign language is totally unaccepted as an alternate form of communication. These children are forced, with blows, to vocalize and mimic spoken language. There is little concern as to their level of conceptual understanding.

Although more than half of the disability community (excluding 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 family and in accordance with its economic, emotional and physical resources. Unwanted pregnancies resulting from rape occur often. Commonplace are intentional abortions brought on by beatings. In law, children can be removed from the care of women who are deaf solely on the grounds of their mothers’ disability. People I spoke to thought that women with developmental disabilities, any type of learning disability, epilepsy and cerebral palsy, experience the most extreme forms of victimization.