Over the past 30 years, women’s health advocates have been working hard to obtain publicly funded health services for women, such as breast cancer screening programs, sexual assault and violence prevention programs, and sexual health centres. While the creation of these services is often celebrated as a historic achievement during events such as International Women’s Day, a significant number of women still face barriers when they try to access the services.
Maria Barile, one of the founders of the DisAbled Women’s Network (DAWN) Canada, recently produced a report entitled Access to Breast Cancer Screening Programs for Women with Disabilities. Describing the purpose of the study, she states that women with disabilities are often “denied services provided to women simply because these services are ‘unintentionally’ geared to non-disabled women.”
In a separate but equally important publication titled Individual-Systemic Violence: Disabled Women’s Standpoint, Barile states that “it is not surprising that non-disabled women have not always been aware of the life experiences lived by women with disabilities.” Day-to-day living within our current social structures separates women who live with disabilities from women who do not.
In the spring issue of ABILITIES, the Council of Canadians with Disabilities and the Canadian Association for Community Living called upon the federal government to commit to a “disability framework” in new policy initiatives, such as caregivers, child care, and cities and communities. Public consultation processes to develop our neighbourhoods, public spaces and transportation systems and to provide health and social services have more often than not excluded people with disabilities.
By the year 2007, more than half of the world’s population will live in urban environments. While cities and larger centres can offer individuals greater health and community service options, women with disabilities face significant barriers. They are more likely to be unemployed or live in poverty, and experience a higher level of violence, abuse and neglect than their non-disabled sisters. They are also more likely to face discrimination and attitudinal barriers due to the impact of multiple oppressions related to disability, gender, ethnicity and culture, language, age or sexual identity. Access to services and public events are hampered even further by inaccessible transit, inadequate numbers of parking spots, inaccessible public entrances and washrooms, and communication mechanisms solely designed for people without disabilities.
The Government of Canada will invest more than $9 billion in a “New Deal for Canada’s Cities and Communities” over the next five years, through a combined gas tax rebate, GST rebate and Green Municipal Funds. As city councillors and planners get ready to tackle housing shortages, poverty, gridlock, pollution and green spaces challenges, increasing the participation of women with disabilities in municipal consultation processes will be an important initiative. As our sisters, partners, mothers, service providers and volunteers, women with disabilities make immense contributions and deserve full participation in Canadian society.
Today, many Canadian women are crossing cultural, geographical and other boundaries of identity to ensure that the social and physical infrastructure needed for health is inclusive of women with disabilities.
In this article, Fran Odette from Education Wife Assault (EWA) and Gail Lush from the National Network on Environments and Women’s Health (NNEWH) interviewed women with and without disabilities to identify some of the barriers and supports around the many access issues related to health services. These women are fostering networks with organizations, community health centres, service providers and friends to create environments in which women with disabilities are empowered to obtain the services they require. While these women probably would not consider their efforts extraordinary, we see them as leaders in their communities.
Barriers to Wellness: Stereotypes and Attitudes
Women with disabilities experience discrimination, which limits their ability to receive appropriate health information and care and the respect they deserve. Rafia Haniff-Cleofas is a member of the Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO) who speaks out against racism and the stress and health problems it creates for ethno-racial women with disabilities.
“A lack of awareness on the part of health service providers about cultural issues can translate into racist incidents,” explains Haniff-Cleofas. She uses an excerpt from We are Visible: Ethno Racial Women with Disabilities Speak out about Health Care Issues (1996) to illustrate this point. In this situation, an ethno-racial woman with a disability was having a routine ultrasound. Afterwards, she searched for a bathroom. In the woman’s words: The bathroom, needless to say, was not accessible, and the attending nurse could not lift me, so she brought a man into the facility. At first I thought he was a male attendant. However, when he saw my panties on the floor, he became extremely embarrassed and didn’t know what to do... It turned out that this man was just a man the nurse picked out of the people in the waiting room... Consequently, I was in a state of undress with a strange man... When I complained, the nurse said, “Oh, it’s just because of your culture. Women in your culture are too inhibited. A white woman wouldn’t have complained.” I told her that was not so and I complained to her supervisor, but I don’t think anything was done to reprimand her.
Haniff-Cleofas says this is “a clear example of the complexity of issues faced by ethno-racial women with disabilities. The situation started out being an issue of accessibility, but ended up being one of violation of her privacy and of racism.
“Racism causes health problems and is a major source of stress for ethnoracial women with disabilities,” says Haniff-Cleofas. “Like abuse, racism can be internalized as a source of shame, with the result that the woman blames herself. As women with disabilities might already be socially isolated, the additional burden of racism can be overwhelming.”
Haniff-Cleofas devotes countless volunteer hours to ERDCO. Founded in 1993, ERDCO is a non-profit, consumer-run organization that works within an anti-racist framework. The coalition operates on the conviction that all people with disabilities want to be respected, live with dignity and enjoy full participation and citizenship.
As a member of ERDCO, Haniff-Cleofas works with Women’s Health in Women’s Hands (WHIWH) Community Health Centre in Toronto. She believes that WHIWH has been incredibly supportive of the issues of ethnoracial women with disabilities for the past 15 years.
“The staff at Women’s Health in Women’s Hands understands that women are the experts in their own health care, and that health incorporates the biological, socio-cultural, psychological and spiritual dimensions of our lives,” says Haniff-Cleofas, who highly recommends WHIWH to ethno-racial women with disabilities. “It is physically and culturally accessible and delivers programs that include an anti-racist and anti-oppression analysis of the needs of Black women and other women of colour.”
Haniff-Cleofas is also co-author, with Rabia Khedr, of a paper entitled “Women with Disabilities in the Urban Environment,” prepared for the National Network on Environments and Women’s Health. (Please see the Resources section for more contact information about these organizations and publications.)
Women with disabilities also experience many stereotypes that can often have lifelong consequences on their health. One stereotype is not being regarded as sexual beings in need of human touch, self love and companionship. Adult women with disabilities often say that these attitudes can be fostered during preadolescence due to the lack of inclusive sexual health education in the schools. As well, their health care providers seldom offered them information about healthy sexuality and sexual health, especially when they were younger.
“Youth with disabilities are often taken out of sexual health education classes and are not taught the things that affect them,” says Alessia Di Virgilio, a recent graduate of Toronto’s York University and creator of a zine called Sex on Wheels and a video entitled The 411 on Sex and Disability. She says they also find that “some health professionals share confidential information with parents and guardians.” The lack of privacy experienced within these settings limits young women’s ability to ask for important information, because they are afraid their caregivers will find out.
Di Virgilio is a peer facilitator for a community-based program in Toronto called SexAbility, which offers comprehensive sexual health information to youth aged 16 to 29 with mobility disabilities through peer-to-peer education. The program is operated by the Anne Johnston Health Station (AJHS), where peer facilitators offer workshops on sexuality, and sexual health and disability to schools, community centres and service providers.
Susan Ralph, an Individual Advocate at the Independent Living Resource Centre in St. John’s, Newfoundland, has provided many educational seminars to community organizations and women’s groups about how sexual and reproductive health issues affect her as a woman living with a mobility disability. The proud mother of a toddler, Ralph recalls that there were many questions that she wanted answered regarding her ability to have sex and to have children.
“As a teenager, I had a steady boyfriend and decided that I should use some birth control along with condoms, because at the time pregnancy was my biggest concern,” Ralph says. “So, like all my peers, I went to the doctor to ask for the birth control pill, and was basically told I didn’t need it. I guess with my insecurities, I did not ask why not. Today, when I think back about that conversation, I know that I wasn’t taken seriously because chances are he perceived me as having a lack of sexual desire. I am certain that the doctor thought [my request] was an attempt to be part of the norm – to fit in with the rest of the girls.”
Ralph believes these stereotypes contribute to women with disabilities having unwanted pregnancies or sexually transmitted infections, and that health educators need to recognize that women with all kinds of disabilities need to be fully informed about risks and prevention techniques.
“While disability can affect sexuality,” says Ralph, “through creative problem solving, communication and building on the definition of what sex needs to be, every woman, regardless of disability, can create ways to express herself sexually.”
Barriers to Wellness: Access to Women's Health Services
Having worked within the disability rights movement for more than 30 years, Maria Barile has committed herself to making women’s organizations and women’s health services accessible. Having accessible women’s health services related to gynecology, birthing, breast screening and traditional and alternative medicines is particularly important to her.
Her research study Access to Breast Cancer Screening Programs for Women with Disabilities (2003) was intended to determine the universal accessibility level of nearly 20 radiology clinics in Montreal. The women involved in the study assessed service barriers, such as the degree to which mammography equipment adequately lowered to accommodate a woman who uses a wheelchair, whether the examination rooms were accessible, whether the medical forms were accessible for women with various types of disabilities, and how well the staff was informed of disability issues.
“Our goal,” says Barile, “was to report our experiences of the environmental barriers and/or facilitators at the centres in hope that this aids women with disabilities to choose centres that best suit their needs.” Barile adds that as a direct result of the research, these centres are preparing to be more accessible.
Barile is one of the founders of Action des femmes handicapées de Montréal (AFHM), in addition to DAWN. To find out more about these organizations or to get a copy of Barile’s report, please see the Resources section.
Michelle Hurtubise, Executive Director of the London Intercommunity Health Centre, is no stranger to issues surrounding access for women with disabilities. In the late 1990s, Hurtubise was the second employee hired with the Barrier Free Health Zone at the Anne Johnston Health Station in Toronto. The AJHS is a not-for-profit community health centre providing a range of programs and services for seniors, youth and people with physical disabilities requiring a barrier-free environment.
When the Barrier Free Program first started, the AJHS staff put a lot of care into finding an accessible examination table. “One of the biggest barriers for women getting good, comprehensive physical care,” says Hurtubise, “is the positions you have to lie in for your Pap exam. The wonderful thing about the height-adjustable table we purchased was that it was open underneath and on wheels, so that you could transfer from a wheelchair on any side of the room.”
She adds that the table’s height-adjustable stirrups allow women to move in a variety of positions, and also support the knees. Hurtubise says these features make it possible for a physical exam to be done without extra people in the room, allowing for “a really high level of privacy and comfort.”
The Health Station was originally a health centre serving seniors and youth. “When it went through an expansion to a barrier-free program, the staff renovated to create accessible rooms, offices and washrooms for about $150,000.” She points out that, if accessibility is incorporated into a building plan from the beginning, it costs very little extra. “It can be expensive to retrofit. But there are people who are building plans right now who have an opportunity to create an environment that is more accessible. Good design just makes sense. It’s easier for all kinds of people to move – women with young children, seniors and people with back problems. So many people can benefit.”
Hurtubise sees firsthand that quality care and improved accessibility mean universal access for everyone.
Barriers to Wellness: Transportation
Affordable and accessible transportation is another key concern for women with disabilities. “Access to health services means more than being able to make an appointment,” says Susan Ralph. “It means being able to go to an appointment and have accessible transportation to get there. It means being able to get into a doctor’s office. It can also mean bringing an advocate with you, without being questioned. It means having accessible examining tables, accessibility within hospitals, and receiving whatever disability-related supports that one might require in order to access services.”
Para-transit systems are often more expensive than generic public transportation, says Ralph. “While five dollars to get to and from your doctor’s appointment may not seem like a lot of money, it can create a huge barrier for women with disabilities who are on a limited income.” Ralph notes that there are women living in municipalities just outside of St. John’s who do not have accessible transportation to take them to hospitals in the city.
Furthermore, many women living in rural communities in Newfoundland and Labrador must travel hundreds of kilometres to a city or centrally located town to see a specialist. “I know of women who have had to literally move to St. John’s... haul the oldest child out of school, pack it all in, and find an apartment...in order to have accessible transportation to and from the hospital to see the high-risk pregnancy doctor.”
Depending on individual circumstances, Ralph says women might need a home support worker to travel with them, accessible housing for a couple of nights, or money to cover child care expenses. “If women don’t have the money to pay for supports, costs are a huge barrier.”
In Newfoundland and Labrador, the Department of Health and Community Services and the Department of Human Resources, Labour and Employment will provide medical transportation and housing for those who qualify for income support. Ralph believes this program is good, but also adds that “it’s a tangled web, because it takes a couple of months to navigate through it. It’s not easily done, and unless women have supportive advocates or are empowered to do this stuff, it becomes a nightmare, and oftentimes they give up on it.” As an Individual Advocate, Ralph helps people who self-identify as having a disability to obtain the supports and services they require to become self-reliant.
Barriers to Wellness: Impact of Health Reform
Many community organizations that serve the needs of women (shelters, sexual assault and crisis prevention centres, sexual health clinics and women’s centres) are feeling stretched for resources as our governments continue to “accelerate” health reform.
We know that violence impacts women’s health and, oftentimes, disability is the direct result of violence/abuse. Yet shelters in the province of Ontario are under-resourced but still expected to meet the growing needs of women in the community. As a result, they are often not physically accessible, as they’ve had to find real estate that is affordable and will meet the needs of the shelter. When accessibility is not incorporated into the planning process, a woman living with a disability may find herself having to go outside her community to find an accessible shelter. This relocation may leave her with very few social supports. Services for Deaf women are also impacted as, many times, Deaf women will not go to a shelter because of communication barriers.
If all orders of government recognize the need for stable, predictable resources to address challenges related to health disparities, then they must act to remove inequities by consulting with those whose opportunities for health have been most affected. Barriers to health services are created by the social and physical barriers constructed within our communities and not by individual disabilities. Improving access to health services, as explained by the women themselves, means paying closer attention to health delivery models and practices, and also to broader social needs related to income, safety, peer support, caregiving, housing and transportation.
Since 1996, the National Network on Environments and Women’s Health (NNEWH), housed at Toronto’s York University, has been developing projects between community representatives and researchers that promote equitable access to health information and services for women. Over the next three years it will continue to work for change by collaborating with women with disabilities, including social science researchers, policy makers and disability activists, on a three-phase project entitled Urban Women’s Health and Disabilities.
This project will provide women with disabilities across Canada with a clear, strong voice in the strategies, supports and policy responses needed to remove health barriers in urban environments. The authors of this article are pleased to be a part of this initiative, which begins this fall, and invite all women with disabilities to get in touch with the NNEWH staff this summer to learn more about the project.
About the Authors
Fran Odette is a program coordinator of the Women with Disabilities and Deaf Women’s Program of Education Wife Assault (EWA), now Springtide Resources. Springtide Resources provides training,
resources and material development on all forms of woman abuse.
The Women with Disabilities and Deaf Women’s Program provides training and consultation support to service providers on issues of inclusion and accommodations for women living with disabilities and Deaf women fleeing violence.
Gail Lush is the communications coordinator for NNEWH.
This article was produced by the National Network on Environments and Women’s Health (NNEWH) through its Women and Urban Environments program. NNEWH is supported financially through a contribution agreement with the Bureau of Women’s Health and Gender Analysis, Health Canada. The views herein do not necessarily represent the views of NNEWH or the official policy of Health Canada. For further information about NNEWH and its initiatives, please contact us at [email protected], or call (416) 736-2100, ext. 20715.
Heath Tips for Women with Disabilities
“During my pregnancy the best information I got was from other women with disabilities who had children. I also did my own research and found two great chat groups on the Internet: www.scoliosislife.net and www.disabledparents.net.” — Susan Ralph
“Don’t be afraid to complain and speak out when services are not accessible. If you find health services that are accessible and meet your needs, tell the world about it – promote them as much as possible!” — Rafia Haniff-Cleofas
“Do not be afraid to ask a million questions – to get a second and third opinion – to ask for all the accommodations you need.” — Alessia Di Virgilio
Tips for Women's Health Advocates
“Accessibility benefits all women, acknowledging that disability and physical difference is a human experience. Accommodation is part of all women’s rights to fully participate in their own health care.” — Fran Odette
“Be educated. Know that women with disabilities have specific issues that cannot be overlooked. Support them in their decisions about their own bodies.” — Alessia Di Virgilio
“Information must be accessible. Women need to be supported. Women with disabilities need to be empowered to make decisions around their own health.” — Susan Ralph
“Promote awareness and education on cultural diversity, disability and accommodation issues for women with disabilities.” — Rafia Haniff-Cleofas
Resources
If you know of any additional health resources for women with disabilities, please let NNEWH know by contacting Gail Lush at (416) 736-2100, ext. 20713, or by e-mail at [email protected].
Publications
- Access to Breast Cancer Screening Programs for Women with DisabilitiesBy Maria Barile
Available from DisAbled Women’s Network (DAWN) Ontario
http://dawn.thot.net/afhm.html
- Breast Health and Beyond for Women with Disabilities: A Provider’s Guide to the Examination and Screening of Women with Disabilities
Visit the website of Breast Health Access for Women with Disabilities for information.
www.bhawd.org
- Breast Self-Examination: A Handbook for Women with disAbilities
Read this informative guide at the website of DisAbled Women’s Network Ontario.
http://dawn.thot.net/BSE_Handbook.html
- Challenges of Change: The Midlife Health Needs of Women With Disabilities
Download this study from the website of the British Columbia Centre of Excellence for Women’s Health.
www.bccewh.bc.ca/PDFs/challengesofchange.pdf
- Individual-Systemic Violence: Disabled Women’s Standpoint
By Maria Barile
Available from the Journal of International Women’s Studies, Vol. 4, November 2002
www.bridgew.edu/SoAS/jiws
- Pregnancy and Women with SCI
Online brochure from the Spinal Cord Injury Information Network.
www.spinalcord.uab.edu/show.asp?durki=22442
- Reproductive Health Care For Women With Disabilities: A Guide from the Center for Research on Women with Disabilities
www.bcm.edu/crowd/reprod/modules/home.html
- We are Visible: Ethno Racial Women with Disabilities Speak out about Healthcare Issues
Available from the Ethno-Racial People with Disabilities Coalition of Ontario (ERDCO)
E-mail: [email protected]
Toll-free: 1-888-988-3999
www.ryerson.ca/erdco
- We’re Women, Too: Identifying Barriers to Gynecologic and Breast Health Care for Women with Disabilities
The book is available from the British Columbia Centre of Excellence for Women’s Health or can be downloaded in PDF format.
www.bccewh.bc.ca/PDFs/
werewomentoo.pdf
- Women with Disabilities in the Urban Environment (2005)
By Rafia Haniff-Cleofas and Rabia Khedr
Available from the National Network on Environments and Women’s Health (NNEWH) and Toronto Women’s Call to Action (TWCA).
www.twca.ca or
www.yorku.ca/nnewh
Videos
- Reproductive Health for Women with Spinal Cord Injury Part I: The Gynecological Examination
For more information about this video for medical professionals working with women with spinal cord injury and other mobility impairments, call (205) 934-3283.
- The 411 on Sex and Disability
For a copy of the video or zines, e-mail Alessia Di Virgilio at [email protected].
Accessibility Guide
- To find a growing list of accessible medical offices and clinics in communities across Canada, check out Access Guide Canada at www.abilities.ca/agc.
Organization Websites
- Action des femmes handicapées de Montréal
www.afhm.org
- Anne Johnston Health Station
www.ajhs.ca
- DisAbled Women’s Network (DAWN) Canada
www.dawncanada.net
- Education Wife Assault (EWA)
www.womanabuseprevention.com
- Ethno-Racial People with Disabilities Coalition of Ontario
www.ryerson.ca/erdco
- Independent Living Resource Centre, St. John’s, Newfoundland
www.ilrc.nf.ca
- London Intercommunity Health Centre
www.lihc.on.ca
- National Network on Environments and Women’s Health
www.yorku.ca/nnewh
- Women’s Health in Women’s Hands
www.whiwh.com
- Sunnybrook & Women’s College Health Sciences Centre and the Centre for Research in Women’s Health
www.womenshealthmatters.ca
Many community organizations that serve the needs of women (shelters, sexual assault and crisis prevention centres, sexual health clinics and women’s centres) are feeling stretched for resources as our governments continue to “accelerate” health reform.Resource details:
Originally published in the Health Department of Abilities, Issue 63
Resource URL: http://www.enablelink.org/women/women_view_article.php?showwomen=1
Type/Format of Resource: Article
Category/Topic of interest: Woman Abuse; Deaf and Disability
Population Group: Health Care Service Providers; Social Service Providers; Women with Disabilities/Deaf Women
Language of Resource: English
Year of Publication: 2005
Contact Information:
Program Manager
Springtide Resources
t- 416-968-3422
f- 416-968-2026
tty- 1-866-863-7868
[email protected]
http://www.springtideresources.com
Relates to Current Project: Breaking New Ground; Supporting Female Trauma Survivors Living with Disabilities