Hesperian Health Guides

Chapter 2: Organizing for disability-friendly health care

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HealthWiki > A Health Handbook for Women with Disabilities > Chapter 2: Organizing for disability-friendly health care


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a woman on crutches speaking.
We can make our voices heard by advocating for our rights and ensuring that disability issues become a priority.

Women with disabilities have a right to be healthy and to have access to good care. But few health centers, clinics, and hospitals are designed to be used by women with disabilities. Also, they may be too expensive, or too far away, and you may not have a way to get there, pay for the medicines or for treatment, or be able to communicate with the health workers.

In this chapter we tell the story of one woman, Delphine, and how she worked with other women in her community to solve a health problem she had. Delphine and her friends discovered that a lasting solution to her problem involved looking beyond Delphine's situation. The health problems of a woman with a disability, like most health problems of all women, are almost never her problems alone—her health problems are a community issue.

Like Delphine and her friends, you and other disabled women you know can work together to have access to good health care, to identify the root causes of the problems in your community, and work to change them.

Delphine's story

Delphine has cerebral palsy. She uses a wheelchair to get around. She has a boyfriend who does not want anyone in the community to know he is having a sexual relationship with a woman with a disability. He is a "midnight husband," who comes to see her only when it is dark at night, and leaves before it gets light in the morning.

a woman whispering to another while Delphine speaks with health workers at a clinic.
Why is she asking for information about safer sex?


One day Delphine realizes she has an unusual discharge from her vagina. She tries local remedies to cure it, but nothing helps. The discharge starts to get worse, and she also gets a pain in her belly. Finally, Delphine goes to a clinic. They do not want to believe her when she says she has sexual intercourse, and she does not want to give them the name of her boyfriend because she fears he will not see her any more.

At the clinic they insist her disability must have caused her problem and try stretching her arms and legs, which makes her muscle spasms worse, and they try giving her medicines to relax her muscles. The medicines do nothing to help the pain in her belly, which gets worse and worse. She also starts sweating and gets a high fever, and has pain when she passes urine.

Delphine remembers a friend telling her about a group of disabled women who meet together and she goes to them to tell them her problem. They have recently been studying a book someone gave them called Where Women Have No Doctor and they read about how infections can be passed from one person to another during sex.

Two of the women in the group volunteer to go with Delphine to the clinic again. Together they are able to convince the doctor that she has had sex. So the doctor does the proper tests and discovers Delphine has a serious sexually transmitted infection in her womb caused by gonorrhea and chlamydia. He gives her the proper medicine. He also tells her that her boyfriend will also need to take the medicine, and that he should use condoms when they have sex so he does not pass an infection to her again.

Looking for the root causes of problems

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After Delphine had taken the medicine and was feeling better, she wanted to believe her health problem was over.

But after reading the book, she knew this was not true. The next time her boyfriend came to see her, she would get infected again if he did not also take the medicine and use condoms.

Delphine discussed the problem with the other disabled women in the group, and together they decided to play a game called "But why..." to help everyone identify all the conditions that created the problem.

Delphine and other disabled women playing the "But Why" game.
WHY did Delphine get sick from gonorrhea and chlamydia?
Because she was infected by her boyfriend.
BUT WHY did the health workers at the clinic stretch my arms and legs instead of treating my discharge.
Because they believed your disability was the health problem. They did not believe it was possible for you to have sex.
BUT WHY did they not believe it was possible for me to have sex?
Because many health workers do not see a person with a disability as a normal person with normal feelings. They do not understand that disability is not a barrier to sex.


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BUT WHY wouldn't Delphine tell the health workers the name of her boyfriend?
Because she was afraid he wouldn't come to see her any more.
BUT WHY wouldn't he come to see her any more?
Because he would be ashamed. People in the village would laugh at him for having sex with a woman with disability.
BUT WHY would they laugh at him?
Because they do not think of us as real women. People would think there was something wrong with him because he had sex with a disabled woman.

When the women had named a long list of causes, they decided to put the causes in groups.

This way it was easier to see the different kinds of conditions that cause health problems and the different areas in which solutions had to be found.


the group of disabled women listing the root causes of Delphine's problem.
PHYSICAL CAUSES
  • Gonorrhea germs
  • Chlamydia germs
  • Women's bodies are more susceptible to STIs than men's bodies especially if there are cuts or sores in the vagina or on the cervix.
  • Poor nutrition and many pregnancies can make women weak and less able to fight disease.
WRONG IDEAS ABOUT DISABILITIES
  • Disabled women are not seen as "real" women.
  • Disabled women can't have sex.
  • Doctors believe most health problems disabled women have are caused by disability.
GENERAL SOCIAL CAUSES
  • Men often have other sex partners.
  • Men won't use condoms because it's "unmanly" and spoils sexual pleasure.
  • Lack of education about STIs.
  • Female condoms are expensive and not easy to get at.
  • Men are ashamed of disabled partners.