Disability World
A bimonthly web-zine of international disability news and views • Issue no. 24 June-August 2004


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Book Review: Welner's Guide to the Care of Women with Disabilities: A Comprehensive Guide to Care

Welner's Guide to the Care of Women with Disabilities: A Comprehensive Guide to Care. Sandra L. Welner, M.D. and Florence Haseltine, M.D., Ph.D. (Eds.)
2003: Lippincott Williams & Wilkins Publishers, 396 pages, $59

Review by Corbett Joan O'Toole (Corbett@disabledwomen.net)

READ THE WELNER GUIDE:

  • it is the most amazing, single resource on health for women with disabilities
  • you and your health care providers will learn important information
  • you can use it to "double-check" your health provider's recommendations
  • even though it was written for a U.S. audience, the health care information is important and useable around the world

Let me begin by saying: you NEED this book. Yes, I know that $59 USD is a lot of money. And I know that you didn't wake up this morning telling yourself that you HAVE to buy a medical textbook today.

But trust me when I tell you that this book has information never collected before. Information that you never even knew existed. Information that you need to assist women with disabilities to become healthy and stay healthy.

A few years ago, the Director of the U.S. Office on Women's Health, added a section on disabled women to their health website. The thirst for information about health care issues for women with disabilities is so great that:

"The Women with Disabilities section of the National Women's Health Information Center ( www.4woman.gov ) receives more than 3,000 visitors a month, consistently placing it among the top-ten pages (out of 3,500 [pages]) on the site." (pg. 3)

The Welner Guide was designed by Dr. Sandra Welner to be a comprehensive resource on health care issues for women with disabilities. Unfortunately Dr. Welner died at age 41 before the book was finished, so Dr. Florence Haseltine stepped in to guide it to completion.

Dr. Welner was an amazing woman. She was a disabled woman (stroke), a medical doctor, a researcher, an author and, most of all, a friendly medical guide for thousands of women with disabilities in the U.S. Her book reflects all aspects of her work.

The Welner Guide is thoroughly researched and very specific. It covers a range of topics including infertility, substance abuse, incontinence, parenting and sexuality. Although it was written for medical professionals, I was able to understand most of the book even though I don't have any medical training (except as a patient). The sections that were too medical-jargon for me, I brought to my doctor so we could go over it together to find solutions for my health care.

A few weaknesses

Although Welner's Guide has many strengths, it does have a few weaknesses. It was written by and for the U.S. audience. Some of the beginning chapters are on very specific aspects of U.S. law (like employment and the Americans with Disabilities Act). Feel free to skip these chapters if you don't live in the U.S. Also the book sometimes feels too medical - like we, women with disabilities, are being discussed only as patients and not people. Finally all of the medications and procedure names are the ones used in the U.S. so you may need to translate these to their more generic names to match what is available in your area.

Scope of the book

Some chapters focus almost exclusively on women with physical disabilities while others explore a wide range of women's disabilities. If you are looking for excellent information for women with physical disabilities or chronic conditions, this book is an amazing resource. For women with sensory disabilities, this book maybe less useful. In part this is due to the tendency of medicine to look at everything through a very narrow lens (i.e. one medical problem at a time). So there is very little medical information that matches the experiences of disabled women's bodies.

Welner's Guide is an amazing resource on all women's health. In most chapters, the authors describe the "typical" procedures and treatment, and then discuss how the "typical" ways might impact women with different disabilities. So even if you don't have the disabilities mentioned, you will learn an amazing amount from the basic information on women's health.

"'Providers are often not sure what to do with people with disabilities,' Welner told a Washington Post interviewer last year. 'They're afraid to do the wrong thing so they do nothing, which is also the wrong thing.'"

It's an ongoing problem that very few women with disabilities are involved in health care. This means that disabled women are getting all their health care information from nondisabled practitioners who may or may not know about the specific care of women with disabilities. Carry this book with you and you can become an informed consumer on your health care (and help a provider get educated too!).

I cannot do this informative book justice in one article so I've selected a range of topics to highlight. They will give you a taste of the book.

IMPROVING HEALTH CARE FOR WOMEN WITH DISABILITIES

"[W]omen with disabilities experience all of the health concerns that nondisabled women do in the areas of reproductive health, mental health, nutrition and weight management, cancer screening, cardiac screening, and so on. These issues may interact with disability issues in ways that are unique to each individual, but the disability does not take them away. Viewing health care for women with disabilities in this context emphasizes similarities between these individuals and other women without ignoring differences that must be taken into account when delivering comprehensive services to women with challenging medical conditions." (p. 95)

As Dr. Welner and Ms. Temple describe above, disabled women need a lot of different types of health care. They need general as well as specialized health care. They need health care practitioners who are open to designing an individualized health care program since a disabled women will not easily fit into pre-defined health care strategies. As Dr. Welner says, "there are no "roadmaps" to follow. Communication and involving the disabled woman is the key."

In the U.S. there are 30 million women with disabilities (21% of the U.S. population). Of these women, 65% (19.5 million) have "severe functional limitations" and 21% (6.3 million) use personal assistance. Yet, as the Welner Guide repeatedly documents, these women do not receive regular or effective health care. As researchers from the Centers for Disease Control and Prevention found:

"Research indicates that women with disabilities encounter many of the same problems as women who are not disabled, yet they report overall poorer health. Many also face substantial physical, economic, social and attitudinal barriers to accessing care and have the extra responsibility of dealing with the health concerns related to their disability." (p. 373)

While there are many sources that document the problems facing disabled women in health care, Welner's Guide is one of the only sources that presents information and solutions to those problems. In the opening chapter, Wanda Jones, Director of the U.S. Office on Women's Health, reminds medical professionals:

"Whether is it gynecologic exam, pap test, contraceptive or sexually transmitted disease (STD) discussion, colon or breast cancer screening, or immunization, providers should make NO assumptions about the woman's health needs based solely on the nature and extent of her disability." (p. 1)

Welner's Guide adds to the limited information on diverse women with disabilities. Even though the majority of health care information on women with disabilities was done on European-American women with physical disabilities, particularly spinal cord injuries, authors include little-known research on women with other disabilities and from other racial and ethnic groups.

Disability has a disproportionate impact on women. Economics, racial barriers, age, and even specific diseases create different pools of women with disabilities. In the U.S. "indigenous women (21.8%) and African-American women (21.7%) have the highest rates of disability among women with disabilities." (p. 271) Systemic Lupus Erythematosus (often called 'lupus' or 'SLE') impacts women 12 times more than men (1 man for every 12 women with lupus). African-American women are diagnosed with SLE 3 to 4 times more frequently than European-American women and have increased disability and death rates from it.

SPECIFIC HEALTH CARE SUGGESTIONS FOR MEDICAL PROFESSIONALS

Welner's Guide offers many specific suggestions for both health care workers and women with disabilities. Dr. Welner's multiple points-of-view as disabled woman and doctor infuse the book with details that are impossible to find in literature written by people who are not connected to the disability community. For example, she urges practitioners to avoid using latex (common in examination gloves) when seeing patients with spina bifida as many people with spina bifida are allergic to latex.

Her expertise in gynecological care provides valuable information for positioning patients and performing internal examinations. For example, she advises that t o open a woman's spastic legs for an examination adjust her legs with slow, gentle movements because moving quickly can trigger increased rigidity. Also make sure that whatever her naked skin touches is warm and not cold. She suggests putting a towel or blanket over the metal parts of a table and put an oven-mitt over the metal foot holders.

Before a pelvic exam, she recommends having women with neurogenic bladders and/or bowel evacuate (i.e. empty their bowel and bladder) to avoid embarrassing accidents and time-consuming clean-up.

She even has advice for managing patient loads in an office. In the U.S. it is common for doctor's offices to refuse to see a patient who is more than 15 minutes late for their appointment (even though it is common for patients to wait even longer than that for a doctor to see them).

"Whenever possible, it is helpful to be more lenient with cancellation and late-arrival policies to accommodate women with disabilities using public transportation because they have no control over broken elevators, late buses, and broken lifts."

Welner's Guide also suggests that medical staff plan to provide assistance to patients who have difficulty filling in forms and offer them a confidential way to get help. It also suggests that doctors should assume that women with disabilities have not had access to health education materials and provide them.

Dr. Margaret Turk advises physicians to expand their definition of their job. Working with disabled patients, counsels Dr. Turk, means expanding their medical knowledge base, learning the rules of health insurance companies (which in the U.S. tightly define what people with disabilities receive), create accessible environments and know the accessibility of the physicians they refer to, and create partnerships with patients to create workable plans for obtaining and maintaining optimal health.

The charts in this book are a goldmine. You can find out how birth control methods interact with different disabilities. Or evaluate the impact of pregnancy or medications on women with disabling rheumatologic conditions (like arthritis or lupus). You can see what percentage of disabled women are abusing drugs. Or see a list of foods most likely to trigger bowel incontinence.

HEALTHY BODY, HEALTHY MIND

There is a strong emphasis in Welner's Guide on the importance of having both a healthy body and health mind. Most research on disabled women's health focuses on specific medical problems to the exclusion of other, often concomitant, problems. Dr. Welner and Ms. Temple reminds us that the:

"Ultimate goal of health maintenance programs for women who are disabled is to maximize independence and well-being while minimizing deterioration and intercurrent illnesses." (p.95)

It is important to note that they neither state nor imply that the goal is to "heal" disabled women nor to remove their disabilities. Instead, they tell us that health care needs to focus on keeping women as healthy and independent as possible while limiting any additional health problems. To accomplish this, Welner's Guide advocates for an integrated, whole-body approach to health care for women with disabilities. They see nutrition and physical activity as important as bladder care and pain management.

Numerous authors document the intimate interrelationship between physical and mental states. Inability to be independent due to health problems creates depression and lack of physical activity which, in turn, creates pain and increasing barriers to independence.

Disabled women have an increased risk for heart disease and osteoporosis because they do not have enough weight bearing activities or aerobic exercise, which lead to, and are reinforced by a sedentary lifestyle and obesity. Prior to reading Welner's Guide, I wasn't too concerned about my heart's health until I read this statistic:

"Cardiovascular disease is the leading cause of mortality for women, claiming more than 500,000 lives annually, a twofold greater mortality than that attributed to all cancers." (p. 240)

Now, I am interested. Research shows that lack of exercise increases risk for heart disease. Pain also limits women's ability to exercise and also causes depression, anger and anxiety. Over time, most women with disabilities who do not exercise become "deconditioned", or "couch potatoes". It quickly becomes a cycle: lack of exercise increases fatigue and pain which increases lack of exercise. There are many reasons that people with disabilities do not exercise more, including "pain, fatigue, experience of stigma, uncertainty about disability progression, discrimination, prejudice, abuse and oppression." But without regular movement most women will experience increased disability and limitations. As Marya Santiago states:

"Only regular participation in moderate physical activity or exercise programs has the potential to break the "vicious cycle" caused and promoted by high levels of fatigue and physical deconditioning." (p.223)

IMPORTANT, AND OFTEN OVERLOOKED HEALTH CARE ISSUES

One of the best gifts of Welner's Guide is the amazing detail. It offers extensive thinking and research (when available) on a wide variety of health conditions for women with disabilities. Here is a brief taste of a few of them.

SEXUALITY

"A sense of humor can be the most valuable attribute in making flexible adjustments to physical limitations [during sex]." P.351

The best part of the sexuality parts of this book is that the writers expect that women with disabilities want to have a sex life. They do not expect any woman to look like a model or move with the flexibility of a gymnast. So they provide lots of concrete information about positions, exploration and contraception.

After a trauma, many disabled women go through a process of re-acquiring their sexuality. It might begin with a shutting down of sexuality. Slowly a woman may begin experimenting - perhaps during bathing. She will need to find her own way to pleasure again. It will certainly not be the same as it was before. Many women who are not disabled go through this also when they age. Their body is not reacting the same as when they were younger. With creativity, this can be a wonderful time for exploring and creating new pleasures for yourself. And, if she desires, she can share this new body with a caring partner.

Luckily, page 351 of Welner's Guide provides drawings of "suggested coital positions for people with a disability or chronic illness". These positions give readers lots of ideas for comfortable positions for sexual intimacy. Even though these positions demonstrate coital (i.e. male-to-female penetration) positions, they also give ideas for how to be positioned for non-penetration sexual intimacy. Although the authors use the term "partner," most of the information is written presuming heterosexual partnering. For women who prefer sex with women, there is still lots of valuable information throughout the sexuality sections.

Welner's Guide argues that for disabled women to feel comfortable about being sexual, they must think about their needs and put it in place before having sex. This "planned spontaneity" may include slippery sheets, medication management, incontinence management, or having extra cushions. They suggest that even if a woman doesn't return home with a partner, she can still "have a fun solo experience."

Dr. Beverly Whipple and Dr. Sandra Welner remind us that men and women's physiological sexual responses are very different. A woman's sexual response is circular and a man's is linear. A man's typical pattern is desire, arousal (erection), and orgasm. A woman's typical pattern is seduction, sensation, surrender, and reflection. It has even been documented that women can have orgasms from a fantasy - without being touched at all or touching themselves.

A significant health concern for many disabled women is contraception. Welner's Guide is full of facts, charts and opinions on contraceptive choices for women with disabilities - and even some creative disagreements. While Drs. Elizabeth Drey and Philip Darney strongly recommend a specific IUD (levonorgestrel intrauterine device or LNG IUD), Dr. Sandra Welner doesn't even mention it as useful in her chapter. I like to think of this as getting a second opinion for free.

The Drey/Darney chapter offers many useful charts on contraceptive choices for women with various disabilities and even offer useful websites for further contraceptive information.

In discussing genital infections, Dr. Sandra Welner points out that the most commonly prescribed medications for yeast infections can have significant interactions with the drugs that are often prescribed for women with disabilities including: antihistamines, warfarin, cyclosporin, digoxin, lovastatin, methylprednisolone, phyenytoin, and nortiptyline.

DEAF WOMEN

Dr. Welner was very concerned that Welner's Guide include as many women with different disabilities as possible. She actively recruited deaf women to write a chapter on health care for deaf women. The authors,

Dr. Teresa San Agustin, MD, Joy Atchison, M. Ed., and Bonnie Gracer, MSW are respectively a doctor, a professor and a social worker, all of whom are deaf. Their chapter is entitled Health Care and Deafness: Deaf Professionals Speak Out. It is written in a wonderfully accessible style. They educate both deaf and disabled women as well as health care professionals through specific real-life stories of deaf women in health care. They are careful to provide a balance of positive and negative experiences. They also provide important commentary after each example of what did and did not work. The stories cover everything from using interpreters in an Emergency Room to keeping on hearing aids until surgical sedation was completed to appropriate care during psychiatric crises. They end the chapter with great resources (based in the U.S. but most having websites).

INCONTINENCE

When I realized this book had two chapters on incontinence, I was less than thrilled. It's not an issue that I deal with personally and I thought the chapters would be dense and tedious. I was wrong. Much to my surprise, the chapter on bowel incontinence was fascinating.

They grabbed my attention right at the beginning by stating that: "Bowel and/or bladder incontinence is often single reason for institutionalization of women with disabilities." Suddenly the topic of incontinence became important to me.

The authors, Dr. Kirsten Wilkins and Dr. Kirk Ludwig, present the information in an easy-to-understand format. They, and the authors on bladder incontinence, offer specific medical and behavioral suggestions including dietary interactions, identifying medications that increase incontinence and if needed, surgical techniques. They note that alcohol, and liquids with caffeine such as coffee, tea and colas act as diuretics and cause the body to actually lose more water.

WOMEN WITH COGNITIVE IMPAIRMENTS

Women with cognitive impairments are rarely included in texts about women with disabilities. Yet Dr. Welner sought out specific information on gynecological care for women with cognitive disabilities. The chapter by Dr. Elisabeth Quint gives good, specific descriptions of what constitutes compassionate and effective care.

Unlike nearly everything else written about women with cognitive impairments. Dr. Quint argues for the need for physicians to assist the woman in keeping her physical integrity. She specifically challenges the needs of families to advocate medications or sterilizations to control a woman's menstruation. Instead, she argues, physicians should be assisting families to find solutions that maintain a woman's physical integrity and dignity.

In one small example of the value of this chapter, she recommends a long but narrow speculum (like the Huffman-Graves) for examining adult women, stating that the pediatric speculum is narrow but not long enough to examine an adult woman.

PROBLEMS WITH MEDICATION INTERACTIONS

Throughout Welner's Guide authors identify how medications commonly prescribed for disability conditions interact negatively with medicines commonly prescribed for women's health problems (like yeast infections, etc).

The chapter on the interactions between commonly used psychiatric medications and commonly prescribed medications for disability conditions is outstanding in its thoroughness. Although most publications on disability and health routinely ignore the issues of mental health, there are numerous documented studies that show that people with disabilities have a high incidence of mental health challenges often due to living under the stress of being a marginalized and underserved population.

Before you take any medications you should read this chapter. It documents the many negative interactions between commonly prescribed psychiatric medications and commonly prescribed disability medications which could "1) exacerbate a patient's medical symptoms; 2) mimic or worsen the side effects of other drugs, and 3) interact with other (disability) meds with untoward consequences." (p.301)

SEXUALLY TRANSMITTED DISEASES

Unlike societal stereotypes, disabled women do have sex and sometimes do get sexually transmitted diseases. Dr. Welner wrote an entire chapter on genital infections and sexually transmitted diseases (STDs).

Dr. Welner's writing offers the specific "insider" advice that comes from treating hundreds of women with disabilities. For example, in discussing the treatment of herpes simplex complex, she notes that many women and their physicians may misdiagnose a herpes ulcer for a decubitus ulcer (pressure sore), preventing the woman from getting appropriate treatment. She suggests that since healing the herpes ulcer in a genital area would require a wheelchair-riding woman to lay down for an extended period of time, a more efficient strategy would be to use heat lamps and other approaches to accelerate the ulcer's healing.

DRUG AND ALCOHOL ABUSE

Professionals in the field of substance abuse are concerned that people with disabilities are not identified as potential abusers even though studies show that they have significantly higher numbers than nondisabled people. In the United States problems related to alcohol and other drugs are considered to be the number one public health problem. Disabled women may abuse illegal (street) drugs, alcohol, prescription medications or a combination of these.

The authors suggest that all new rehabilitation patients are checked for substance abuse and hepatitis. They are concerned that family, friends or professionals of women with disabilities do not see them as having a substance abuse problem. Too often, problems related to substance abuse are incorrectly attributed to disability, inaccessibility or medications. So even though a woman is acting outrageously, it will be attributed to a "natural frustration" at not being able to participate in an event instead of the drugs that she took.

ABUSE

Numerous studies have documented that people with disabilities are at a higher risk for physical, sexual and emotional abuse. The statistics most frequently used in Welner's Guide are from a CROWD study that found that the overall level of abuse was the same between disabled and nondisabled women (62% for all kinds of abuse and 30% for sexual abuse, for both groups). One important notation on this research is that it was conducted on white (i.e. dominant culture), college-educated women - a group that is not representative of disabled women in the U.S. Other researchers have found significant differences between the abuse rates for disabled and nondisabled women.

But even in the CROWD study, disabled women were victims of violence by more perpetrators, for a much longer duration, and abused by intimate partners, family members, personal care attendants, and health care providers. Comparing disabled women to nondisabled women using only types of abuse that nondisabled women experience masks the types of abuse experienced only by women with disabilities such as, removal of mobility devices, refusal to administer medications, refusal to provide basic access, etc.

The authors note that when screening for abuse, it is important for health care providers to realize that the disabled women may not feel safe disclosing abuse with a family member or attendant in the room, because the majority of women with disabilities are abused by people in their everyday life. One positive change is that many U.S. professional health care organizations, particularly those for Obstetricians and Gynecologists, encourage their members to screen for domestic violence.

DISABLED MOTHERS

The chapter on "Baby Care Preparation: Pregnancy and Postpartum" by Judith Rogers and other Occupational Therapists from Through the Looking Glass in Berkeley, California, USA is wonderfully informative. As they state the problem:

"some women are pressured to terminate their pregnancies or relinquish their children by uninformed individuals unable to imagine how women with disabilities can care for their babies." (p. 169)

How refreshing to read health care professionals identifying the barriers to raising children as based in the lack of imagination of health care and social worker professionals and not in a disabled women's lack of parenting skills.

Their chapter continues by offering multiple strategies for professionals, disabled mothers, their partners and families. They begin by discussing what has come to be the most radical theory of their work: "Visual History". As they describe it, "visual history is the accumulation of images of the various ways in which mothers with physical disabilities successfully perform baby care activities." Nondisabled people provide a visual history of how they perform babycare activities every day. All women can describe how a nondisabled woman holds a baby to feed, or to bathe.

Yet almost no woman has seen a woman with a disability performing the same tasks. So when a disabled woman wants to have a baby, she is blocked by her own, and others, lack of any images of how a woman with a similar movement pattern would accomplish basic baby care activities such as feeding, changing, carrying and bathing.

Through the Looking Glass has created numerous ways for people to get strategies and ideas: they videotape parents with disabilities performing baby care activities; they have written numerous professional articles; they host international conferences on parenting with a disability; and they publish Idea Books for adaptive parenting equipment.

SUMMARY

As I've said often in this review, you need to own this book. It has information you won't find anywhere else. It's a great way to be informed about your own health care and to help women with disabilities become informed about theirs. This book is so packed with information that it took me 15 hours to read through the 382 pages. Luckily for you, it has a great index so you can find specific information quickly.

Tribute to Dr. Welner

The problem with great women is that when they are gone, the world has a great, big hole in it. Dr. Sandra Welner, who died at age 41, was a great woman, a great physician and a great teacher. She wasn't planning on being any of those things when she went to medical school. She was just going to be a doctor like her father and brothers. But she had a stroke before she finished her medical training.

When Dr. Welner saw medicine from the patient side of the exam table, that changed everything. She watched as her status as a competent person was constantly questioned after she became disabled. She became determined to change medical care for women with disabilities for the better.

One of the amazing things about Dr. Welner was her commitment to changing all the aspects of medicine. She was a primary care physician who specialized in gynecological care for women with disabilities. [Primary Care Women's Health Physician in her own medical offices]

She was a professor of medicine who trained new medical students. [Assistant Professor of Obstetrics and Gynecology at both Georgetown University Medical Center and University of Maryland School of Medicine]

She wrote numerous articles in professional journals to educate doctors and nurses. [see Resources] And just because the world needed it, she invented an examination table that was accessible to both disabled patients and disabled health care providers. [Welner's Universally Accessible Examination Table]

She saw herself as an important bridge between medical patients and health care providers. She worked on just as many community-based disability health projects as she did on professional medical projects. She was the kind of doctor that you could call up (even if she didn't know you) and ask her a question.

She helped start primary care programs for women with disabilities at Washington Hospital Center and the National Rehabilitation Hospital.

She was a soprano in the Keshet Chorale of the Washington, D.C., Jewish Community Chorus.

Dr. Welner was also a consultant to state public health departments, the Centers for Disease Control and Prevention and the Department of Health and Human Services. As Georgetown University wrote in her obituary:

"Welner, above all, wanted patients to feel more independent in seeking medical care. She invented an adjustable pelvic-examination table that could be lowered to 20 inches above the floor, easing a patient's access to and from a wheelchair. According to The Washington Post, she called the device, now used nationwide, the Universally Accessible Examination Table." http://www.thehoya.com/news/103001/news3.cfm

She knew that one person could only do so much. So she decided to gather the best minds in the U.S. on health care for women and people with disabilities and put it all in one book. Her book, " Welner's Guide to the Care of Women with Disabilities: A Comprehensive Guide to Care" is a powerful tool for women with disabilities around the world.

Dr. Welner died in an accident in 2001. When I first heard the news, I was bereft. In the U.S. there is no one else who can do even half of what Dr. Welner was doing. She was a once-in-a-generation gift to us. Thanks to her ongoing dedication to writing down critical health care information on women with disabilities, she left a library of articles and a significant book behind.

Take her book and change the world of health care for the women with disabilities in your part of the world. When people ask how you learned so much, tell them that you are now part of Dr. Sandra Welner's legacy.

Contents of the Welner Guide:

  • Health care challenges for clinicians and clinical researchers
  • Employment issues for women with disabilities: opportunities, programs and outreach efforts
  • Americans with Disabilities Act and the women's health provider: what the women's health provider needs to know about the ADA, case law ramification of noncompliance, and the like
  • The blind or visually impaired patient seeking health care
  • Health care and deafness: deaf professionals speak out
  • Disabling rheumatological conditions affecting women
  • Management of urinary incontinence in women with disabling conditions
  • Management of fecal incontinence
  • General health concerns and the physical examination
  • Contraceptive choices for women with disabilities
  • Genital infections - diagnostic and therapeutic challenges
  • Chronic neurological diseases and disabling conditions in pregnancy
  • Obstetric anesthesia
  • Baby care preparation: pregnancy and postpartum
  • Infertility diagnosis and treatment for the disabled woman
  • Osteoporosis: unique aspects of pathophysiology, evaluation and treatment
  • Exercise and physical activity options
  • Nutritional considerations
  • New perspectives on hormonal management of the menopausal woman with disabilities or chronic disease states
  • Gynecological health care for developmentally disabled women
  • Secondary conditions: physical deconditioning, fatigue and spasticity
  • Disability and depression
  • Special considerations for using psychiatric medications
  • Substance abuse and women with disabilities
  • Violence against women with disabilities: the role of physicians in filling the treatment gap
  • Sexuality issues
  • Pain: gender differences, psychosocial factors and medical management

Additional Resources on Health & Women with Disabilities

Aging with a Developmental Disability by Allison Brown and Leone Murphy
http://www.thearc.org/faqs/whealth.html

Aging/DD Listserve: WOMHLTHAGING-DD@LISTSERV.UIC.EDU (Women, health and aging with a developmental disability)
To join: http://listserv.uic.edu/htbin/wa

American Association on Health and Disability
http://www.aahd.us/aahd_cdc.htm

Breast Health Access for Women with Disabilities
www.bhawd.org

Breast Self-Exams: Modified for Women with Physical and Sensory Disabilities
http://www.bhawd.org/sitefiles/bse/bse_broc.html
Informative guidebook with pictures and very detailed instructions.

Center for Research on Women with Disabilities
http://www.bcm.tmc.edu/crowd/index.htm
Multiple publications on health, abuse, wellness and community and women with disabilities.

DisAbled Women's Network Ontario, Canada
http://dawn.thot.net/
Thousands of webpages of resources on women with disabilities.

June Isaacson Kailes' resource page on Health, Wellness and Women with Disabilities: http://www.jik.com/hwawd.html#Women%27s

Magee Comprehensive Healthcare Center for Women with Physical Disabilities at Magee-Womens Hospital of UPMC Health System
http://www.magee.edu/ClinicalServices/wwpd/wwpd1.html

North Carolina Office on Health and Disability
http://www.fpg.unc.edu/~ncodh/pubs.htm
Many publications are free online (in pdf format or html) from their website including: Removing Barriers to Health Care: A Guide for Health Professionals; Partners in Health Care:
Women with Disabilities & Their Health Care Providers

IF YOU CANNOT WAIT TO GET THE BOOK, THEN READ THIS EARLIER (AND SHORTER) WORK BY Dr. Welner: A Provider's Guide for the Care of Women with Physical Disabilities & Chronic Medical Conditions
http://www.fpg.unc.edu/~ncodh/Providerhtml.html

Parents with Disabilities Online http://www.disabledparents.net/index.html
Great Resources including medical information, adaptive equipment for carrying a baby, as well as networking resources.

Table Manners and Beyond
http://www.bhawd.org/sitefiles/TblMrs/cover.html
"The Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations", by Katherine Simpson (Ed) and Kathleen Lankasky (Producer)

State Projects on Disability and Health
http://www.aahd.us/sindex.htm#slinks
15 states are partnered with the national government to identify barriers to health care for people with disabilities and to make improvements. See this webpage to find research and resources from these projects.

Sexual Health website
www.sexualhealth.com

Susan's Sex Support Site: Resources on Women, Disability and Sexuality
http://sexsupport.org/WomensResources.html

Welner, Sandra; Simon, James & Welner, Barbara
"Maximizing Health in Menopausal Women with Disabilities," Sandra Welner, MD, was published in the May-June 2002 edition of Menopause , the Journal of the North American Menopause Society
http://www.menopause.org/abstract/93208.html

Women with Disabilities: Access to Health Care website
http://www.4women.gov/wwd/wwd.cfm?page=25

Women with Disabilities Australia
http://www.wwda.org.au/contents.htm
Fabulous links and information for women around the world

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