Health of Women with Disabilities: An interview with Jane Maxwell of the Hesperian Foundation

MDG #5: Improve maternal health

Health care for people with disabilities in most countries often focuses on rehabilitation and therapy methods and does not address more day-to-day concerns.  Women with disabilities are particularly affected because they are often denied access to basic reproductive health treatment and information.  The Hesperian Foundation, who brought the simplicity of Where There is No Doctor to the world of public health, will publish A Health Handbook for Women with Disabilities in November 2006.

The Hesperian Foundation is a small non-profit organization in Berkeley, California whose best-known book is Where There Is No Doctor, a medical primer for rural communities and health programs in developing countries.  The book was a success for its practical strategies, cultural sensitivity, and readability and has been translated into more than 80 languages.  According to the World Health Organization, it may be the most widely used public health manual in the world. 

The Hesperian Foundation’s new book is: A Health Handbook for Women with Disabilities.  According to Jane Maxwell, co-author of Where there is no Doctor and editor of the new manual, the idea for the new book grew out of a chapter on disabled women’s health issues in Where Women Have no Doctor (another Hesperian title). ”We decided one chapter wasn’t adequate.  This needs to be a whole book.’”

Inclusive Process

Opinions on the necessity of such a book fell into two camps, noted Maxwell. Some felt that all of this information should be mainstreamed into women’s health manuals, but others felt that women with disabilities would have little chance of finding that information, having never had any reason to believe that the information in those manuals is relevant to them. Funding to produce the book was a challenge for Hesperian, because both funders and health providers had doubts and misconceptions about the relevance of an entire book on the health care needs of women with disabilities. 

Hesperian involved women with disabilities heavily in creating the book. “Over time I’ve gotten to know a lot of women with disabilities and through personal conversations I learned a lot. Many of the women who have been my best advisors are women I met through MIUSA. :  Tina Bregvadze from Georgia, Naomy Esiaba from Kenya, Beatriz Satizabal from Colombia, Silvina Casey, a doctor in Argentina, Kanika Nguon from Cambodia, Andrea Shettle, who lives in Washington, DC, and Lin Thuy from Thailand.  One of my very best advisors was Ekaete Umoh from Nigeria.  We made a poster together with quotes from several women about their experiences with health care.”

Hesperian sent chapters to various communities in different countries for review.  They involved the people who would be users of this book—disabled women in [rural] communities, and incorporated their suggestions into the editing process.

“We asked women with disabilities if they were satisfied with their care; the one response we heard over and over is that disabled women wish that their caregivers would do only what is asked of them.  We [also] asked our community contacts to ask their women’s groups:  What is your image of a community in which a woman with a disability can have a good life?  Some of the answers we heard were:  a place where a woman is not stared at;
an accessible place, where services and buildings can be accessed by everyone; a place where a woman with a disability can participate fully; a supportive place that respects human rights for all; and a place where she can have friends.”

The Health Handbook for Women with Disabilities will include chapters on reproductive health, pregnancy and delivery, and HIV/AIDS prevention and treatment for women with disabilities.  It will be available in various languages and uses pictures and simple language so as to be accessible to people with low literacy.  While mostly targeted mostly at women with disabilities themselves, the book will also be useful for caregivers, health workers and doctors. 

The new book will come out in November 2006 and will be available to order from the Hesperian Foundation website. “I think this book will fill a real niche for a lot of people.  We’ve had a lot of positive responses already and people can’t wait to have it,” said Maxwell.

Contact:

The Hesperian Foundation
1919 Addison Street, Suite 304
Berkeley, CA 94704 
Tel: (510) 845-1447
Fax: (510) 845-9141
Email: hesperian@hesperian.org
Web: www.hesperian.org