Disabled Women and the Right to Health Care
By Theresia Degener (email@example.com)
Visiting Professor at UC Berkeley, School of Law
Professor of Law, Administration and Organization at University of Applied Sciences, Bochum, Germany
Presented at Hunter College, June 7th, 2000, New York
Disabled women are the largest majority among female population because disability is a category that crosses all other categories; gender, race, age, sexual orientation, religion, etc. But even though disabled persons constitute the world largest minority (encompassing more then 600 Million people) we are rarely recognized in the six major human rights treaties. Disabled women find themselves at an even greater disadvantage: we are invisible in all human rights treaties and in most so called "soft laws" that exist for the protection of human rights of disabled people. The International Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW ) doesn't mention disabled women at all. And while the CEDAW committee has passed General Recommendation 18 which requests State Parties to include disabled women in their country reports, very few have done so. At the 1995 UN Conference in Beijing disabled women around the world experienced a major breakthrough. For the first time the international women's movement recognized us as being part of their movement and disabled women were mentioned in more than 300 paragraphs of the Platform of Action document. If we all agree that there shall be "NO GOING BACK" in the Beijing+5 document we need to ensure that disabled women are not rendered invisible again.
The Right to health has been recognized in a number of human rights treaties by now, such as CEDAW , and the International Covenant on Economic, Social and Cultural Rights (CESCR) or the International Convention of the Rights of the Child (CRC). However, there is hardly any jurisprudence on what the right to health means for disabled women. The CEDAW committee has recently adopted General Recommendation 24 on the Right to Health. While disabled women are briefly mentioned as a "vulnerable group" the document falls short of giving a clear statement about government's responsibilities with respect to disabled women's right to health.
Danger of the DALYs
Within other intergovernmental organizations, such as the World Bank, disability is defined in a way that is strikingly at odds with the human rights gains that have been made by the disability community around the world. The World Bank created a new measurement term, called DALY (Disability Adjusted Live Years) which assumes a reduced value of lives lived with a disability. This old fashioned medical model of disability demotes disabled persons to "burdens of society" and conveys a distorted conception of what constitutes a disability. DALY is dangerous in that it will eventually be used as a measurement for allocating public health resources and in that it denies disabled people the status of citizens with equal human rights.
2. Disabled women's access to health care and delivery
Our situation with respect
to access to health care and delivery can be summarized into two points
(1) disabled women have either no access to health care or (2) disabled
women's human rights are violated in the context of health care.
Discrimination and barriers
Let me first say a couple of words with regard to the first point. Studies on the quality of health care services available to disabled women are rare. Some 2/3 of disabled women in this world live in developing countries. In many of these countries women are at a much a higher risk to become disabled because of malnutrition due to male preference. Because of male preference, disabled women receive less immunization and are less often taken to the doctor. Because of gender discrimination women with disabilities receive only 1/5th of the world's rehabilitation services.
In those countries where health care facilities exist, they are often inaccessible to women in wheelchairs, women who are deaf or blind, women with intellectual disabilities.
Why don't women with disabilities have access to appropriate health care services? It's because of barriers which take many forms. Most health care facilities are not accessible because of architectural or communicative barriers. Even in the USA where health care facilities have to comply with anti- discrimination legislation for disabled persons and thus have to take steps to accommodate disabled persons' needs, studies show that most don't. We believe they do not open their doors to disabled persons because disabled persons are not the desired patients. They often don't fit into the economically based concept of managed health care according to which time is money and expertise in rare health conditions is less profitable. Many doctors and health practitioners, frankly, refuse to treat disabled persons. Let me give you a few example of what disabled women experience:
Examples of experiences
A US woman who uses a wheelchair and who needed to see a general practitioner called several offices. She was usually offered an appointment but when she asked about wheelchair accessibility the nurse told her that she had to talk to the doctor first. She would call her back. This woman tried six or seven doctors, no one ever called back.
A German woman with cerebral palsy went to see a gynecologist. She was asked to undress and because it took her fifteen minutes to undress she was sent home and asked to bring an attendant to help her undress more quickly. The doctor refused to see her.
A disabled woman from UK, who lived in an institution asked for an appointment with a doctor outside the institution. She was told that she only had access to the medical personnel of that institution. When she finally went to see the institution-based doctor he refused to give her the treatment she wanted. She wanted contraceptives. He told her to go back to her ward and be ashamed of herself.
An Italian woman who survived polio was in her first term of pregnancy when she saw her doctor. He refused to manage her pregnancy, instead he offered abortion. When the woman refused to undergo abortion, the doctor yelled at her that she was selfish and negligent and that he would inform the custody agency that the child should be taken away from her.
Reproductive health care
Disabled women do not get the appropriate information and treatment regarding reproductive health care. Disabled women rarely get information about sexuality, birth control, sexually transmitted diseases or pregnancy and motherhood from mainstream health care facilities. If disabled women get these services at all, they get them from friends and from the disability community. (A notable exception in the US is the project on Breast Health Access for Women With Disabilities at Alta Bates Medical Center in Berkeley, California, USA.)
Abuse and assault
Another major problem is the lack of medical services for women with disabilities who have been sexually abused or assaulted. Studies from various countries tell us that disabled women are at a higher risk of being sexually exploited or assaulted. Rarely do these women receive adequate medical or psychological help to recover. More often disabled women felt that subsequent medical treatment was like "undergoing a second rape".
Human rights violations
Now I will close my presentation with a few words on the second point: Human rights violations in the context of health care delivery. Medical practitioners are often the human rights violators because they render degrading and humiliating treatment to disabled women. The aim of mainstream medicine is to cure and fix the body and mind of the patients. Disability as a permanent deviant condition is thus a constant challenge to medical practitioners. As a result disabled persons are often victimized as objects of medical experimentation and degrading treatment. These human rights violations take different forms. One is what we call " public stripping". Disabled women and especially disabled girls have to stand naked in front of a number of doctors in order to get "diagnosed" and examined. Another form is forced medical treatment which often collides with medical experimentation. For example, girls who are born without or with impaired limbs are forced to wear prostheses when they are still infants, while reliable research has proved that this is detrimental to their identity development and results in more harm than help. Often these children are amputated in order to fit into the prostheses.
Other forms of human rights violations undertaken by medical practitioners are compulsory sterilization, abortion and hysterectomies, and physical or emotional abuse. Often doctors have no respect for disabled women's right to privacy. As a result many women with disabilities who live independently choose not to see a doctor at all. This in turn contributes to the lack of health services due to architectural and other barriers. Disabled women need to be protected against both forms of human rights violations regarding their right to health: disabled women need access to health care and the health care services need to be respectful and non-discriminating. Governments bear the ultimate responsibility that doctors and other health care providers begin to respect the human rights of disabled women.
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