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Celebrating Women By Maryanne B. Hunsberger Celebrating Women, a forum about social issues, relationships and sexual health regarding women with disabilities, took place on Saturday, June 3, 2006, at the Hyatt Regency in Jersey City. The Women with Disabilities Health Care Task Force of the New Jersey Council on Developmental Disabilities and Speicher-Rubin Women’s Center, New Jersey City University, jointly sponsored the event. Holly Wetscher welcomed the group of 30 women. She debunked myths about women with disabilities not being social beings and not having sexual relationships. She said the task force wants to break these stereotypes. Kate Blisard, director of the People Support Network, gave the keynote speech, recounting how physicians told her mother to institutionalize her because she has cerebral palsy. Her mother refused, and Blisard eventually married an able-bodied man whose family was skeptical when he brought her home. They thought she would be unable to conceive or would deliver babies with disabilities. Physicians told her this, also. However, she bore and successfully raised two able-bodied children and has a new granddaughter. Blisard said many women with disabilities her age didn’t have these opportunities, since they were in institutions. "Yet, they survived. They came out of the institutions and made a life for themselves. We are stronger than society and we think we are. It has been a privilege to know women with disabilities who have kept their dignity despite being seen as useless, helpless, sexless human beings." A panel discussion followed with Colleen Roche moderating. Paulette Eberle, a disability activist and journalist, said society looks down on women with disabilities. She paraphrased Freud who said that the two important things for a healthy life are sex and work, yet society often denies both to women with disabilities. Eberle lost her sight at age 30 and was unprepared for people’s attitudes, particularly those of physicians, who saw her as an asexual being and did not encourage her to be a whole human being. Her marriage broke up because her husband didn’t want a wife with a disability. She said that women with and without disabilities coming together for the day was a step in the direction of equality. Suzanne Smeltzer, RN, EdD, a professor at Villanova University College of Nursing and director of the Health Promotion for Women with Disabilities project, shared information that Harvard Medical School faculty members have written a grant to obtain funding to educate future physicians about the medical needs of women with disabilities. Dr. Smeltzer is serving on a sub task force that will get the information out to health care providers. Dr. Smeltzer also co-authored a revision of A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Health Conditions. This book, published in 2005, was developed by the North Carolina Office on Disability and Health in collaboration with Villanova University College of Nursing. Gail Russell, a Montclair resident who has multiple sclerosis, is legally blind and worked in the field of vocational rehabilitation for 20 years, said when doctors diagnosed her, they incorrectly told her she’d never be able to have sex again. After her diagnosis, Russell became depressed and developed an alcohol dependency, but got sober due to working with women with disabilities. After losing partners due to her disability, she has learned to surround herself with people who can handle disability. "We are women of dignity and honor." Kathy Wood, a social worker for HIP (Heightened Independence and Progress) explained that women with disabilities need encouragement to live life to the fullest. Wood began dating at age 18, but had some disastrous relationships. After a divorce at age 37, she finally understood that her dream of riding into the sunset with a man on a white horse was not realistic. She realized that she could be an independent, capable woman. "We are the strongest people on the planet. If we can survive what we have survived, we can do anything. Be happy. Be strong. Be who you are. Find what makes us fulfilled. Tell doctors that they don’t run our lives; we just need their support." Chrissy Barker, who is employed by the Department of Children and Families, went to college, had a career and married. She thought she had it all until her marriage fell apart. To get through that, she worked, volunteered and dated through two online dating services for people with disabilities. She said that Internet dating was a good way to meet friends with disabilities, and introduced her to someone with whom she is compatible. She has been in a committed dating relationship for two years and is hopeful she will marry again. After lunch, Blisard moderated a round table discussion. Diane Purnell, office manager at the Essex County Office for Disabled, ended the discussion by summing up the day’s theme. "Just because you’re a woman with a disability doesn’t mean you can’t be a sensuous, sexy, vivacious woman. It’s all in the matter of how you see yourself. Your attitude and self-image plays a great deal in that. In the end, if you see yourself as a sexual woman, then you will be." The forum left a strong impression on the attendees. Margaret Vas of Totowa, said, "So much of what they said hit home and described how I feel. I left with the feeling that I am not alone." Time for women to speak out by Marilyn Lukach Editor’s note: This article first appeared on June 27, 2006, in the Daily Record and is reprinted here with permission There is nothing like a room full of dynamic women to get an exciting program off the ground. That’s what happened at a recent forum I attended concerning, according to the brochure, "social issues, relationships and sexual health regarding women with disabilities." Sponsored by The Women with Disabilities Health Care Task Force, the New Jersey Council on Developmental Disabilities, and the Speicher-Rubin Women’s Center at New Jersey City University, this program was titled "Celebrating Women ... where we’ve been, where we are, where we’re going." The topics ranged from lack of fundamental health care for women with disabilities to their social life, the need for understanding from the public, and governmental issues. The keynote speaker was Kate Blisard, an energetic advocate for women’s concerns. Her forthright nature made her a natural to discuss subjects that are personal and intimate to all women. She used the word "mosaic" to describe the many women in the room. We were of all nationalities and all ages. We had different physical and mental challenges and were at different stages of life, but she said, "We have the same hopes and dreams like any other woman." Blisard spoke about the sad truth of finding an understanding physician who truly understands women with disabilities. Most of the time, their general health is ignored and preventive medicine is almost nonexistent. The Dark Ages are alive and well in the medical profession, and doctors, therapists, and caregivers must realize that ignorance and prejudice can no longer be accepted. Every woman in the room was on an individual journey, and Blisard used the words "hard-earned wisdom, empathy and humor" to describe the everyday challenges faced in a world that has a tendency to see physically and mentally challenged women as "helpless, useless and sexless human beings." Nothing could be further from the truth. A lively panel discussion brought up a variety of subjects, including intimacy and privacy in respect to relationships, the underserved disabled lesbian population, and mental health issues. Panelist Paulette Eberle is a freelance journalist who writes and works as a strong advocate for equal rights for all people with disabilities. She just happens to be blind. With her guide dog Prudy at her side, she described herself as an "old war horse" that has been through just about everything. Eberle discussed what she saw as a fact: that female children with disabilities are seen as having little value to society, and their wants and needs are secondary to their nondisabled sisters. They are not encouraged to be whole persons but asexual individuals. I found her to be a thought-provoking presenter. Other panelists discussed self image and self esteem and finding a life partner who can adjust and understand the disability as well as the individual. One of the conclusions reached was that women must become more politically active to foster change, especially when it comes to our health. It may have been a small group, but we agreed that it had been a mighty one. Blisard finished by talking about the small miracles she has seen for challenged women over the years. We do have better education, more acknowledgement and recognition, meaningful jobs and value, which comes as we value ourselves more. We do have a contribution to make to this world, and remember, "equality is never achieved alone."
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WOMEN'S HEALTH CARE