National Study of Women with Physical Disabilities--Final Report
Final Report 1992-1996
Margaret A. Nosek, Ph.D., Principal Investigator
Center for Research on Women with Disabilities
Department of Physical Medicine and Rehabilitation
Baylor College of Medicine
Table of Contents
- Major Findings
- Description of the Sample
- I. Sense of Self
- II. Relationships
- III. Sexuality Information
- IV. Sexual Functioning
- V. Pregnancy
- VI. Sexually Transmitted Diseases
- VII. Abuse
- VIII. Chronic Conditions
- IX. Health Maintenance Behaviors
- X. Gynecologic Health
- XI. Health Care Utilization
I always felt like a neutral sex. It's like I'm not a woman, not a man. I don't know what I am because I was never approached like a woman and I guess that as I grow older and mature more, I have begun to proclaim that identity as a woman and thinking even if no man approached me, I am still a woman, I am still attractive.
36-year-old polio survivor with scoliosis
I know the feeling well--anxious to form relationships, but no one approaches you for a date; raised to expect that you will never marry; given little information on reproduction except that it should be avoided at all costs. I am a woman and only discovered that a few years ago. Until then, disability was a much larger presence in my life. I am also a rehabilitation researcher, and I leaped at the opportunity that arose in 1992 through the National Institutes of Health to investigate why this discovery takes so long for some women like me who have physical disabilities. What my colleagues and I at the Center for Research on Women with Disabilities found is that many women around the country have also experienced negative stereotypes and barriers to understanding and nurturing their womanhood. What we also found is that many women with disabilities have overcome the effect of those stereotypes and have had wonderful success in developing relationships, families, and satisfying lives. In this report, we will explain some factors we identified that seem to make the difference.
Many of us weren't supposed to live this long or this well. Those of us with severe physical disabilities have beat all the odds. From the time we were born or acquired our disability, we were told or we assumed that life would be short. The fact that we have survived, that we are having children, and that we are even living with gusto astounds the medical profession. In so doing, however, we are presenting medical science with a number of anomalies, mysterious conditions that defy diagnosis and treatment. Special disability-related needs during pregnancy, premature aging, unexpected responses to standard courses of treatment, and masking of symptoms by disability, frustrate those who are trying to deliver good health care to us. We are a population that medicine does not understand very well.
In 1992, we were awarded a three-year grant by the National Center for Medical Rehabilitation Research within the National Institutes of Health to examine the "Psychosocial Behaviors of Women with Physical Disabilities." Our enthusiasm for this topic, and the enthusiasm that greeted us from around the country in response to the announcement that we were about to begin this study, prompted us to establish the Center for Research on Women with Disabilities (CROWD) to conduct research on issues of concern to women with disabilities and disseminate the findings nationally.
Our study examined a broad range of issues facing women with physical disabilities. It consisted of two phases. Phase I was a qualitative interview study of 31 women with physical disabilities which helped us understand all the various aspects of sexuality from the point of view of the woman with a disability. You will see quotes from these women scattered throughout this report. The themes we identified in these interviews fell into six basic domains:
- sense of self,
- relationship issues,
- information about sexuality,
- sexual functioning,
- abuse, and
- general and reproductive health.
With the assistance of national and local advisors, including consumers, researchers, medical professionals, social workers, and educators, the research team developed a questionnaire that represented all the primary themes from the qualitative study and issues raised in the literature. In Phase II, we identified 1,150 women with physical disabilities around the country who volunteered to participate in the study or who were recruited through independent living centers in each federal region. We sent each of them two copies of this questionnaire, one for her to complete and one for her to give to an able-bodied female friend to complete. We received responses from 45% of this sample, or a total of 946 women, 504 of whom had physical disabilities and 442 who did not have disabilities.
We collected an enormous volume of information in this study. The survey included 311 questions with more than a thousand variables, yielding more than a million bits of data. For the last few years, we've been analyzing these data in each of the six domains we identified early in the study. Thanks to supplemental funding through the Centers for Disease Control and Prevention, we were able to spend an additional year conducting further analysis of our data on health issues for women with physical disabilities.
The findings of this study will, we hope, lay the foundation for further research on issues of concern to women with disabilities, and empower advocates to press for change in service systems so that they can more effectively assist women with disabilities to achieve independence, equality, and quality of life. If this report peaks your interest, we invite you to contact our office or dial up our World Wide Web page for more detailed information.
Margaret A. Nosek, Ph.D.
1. Women with disabilities have limited opportunities to establish romantic relationships.
Compared to women without disabilities, women with disabilities were less satisfied with how often they date and perceived more constraints on attracting dating partners.
Even when women with disabilities were outgoing with strong social skills and many friends, their friendships were less likely to evolve into romantic relationships than for able-bodied women.
The large majority (87 percent) of the women with disabilities had had at least one serious romantic relationship or marriage. Fifty-two percent were involved in a serious relationship at the time of the study versus 64 percent of the women without disabilities.
Among the women with disabilities who were not married or in a serious relationship at the time of the study, 42 percent said it was because no one had asked them. Only 27 percent of women without disabilities listed that as a reason for not being in a relationship.
More than half of the women with disabilities believed that disability was not a major cause of the ending of a marriage or other serious relationship.
Only 38 percent of the women with disabilities in this sample had borne children compared to 51percent of women without disabilities.
Women with disabilities were significantly more likely than those without disabilities to stay in a bad marriage for fear of losing custody of their children.
2. Self-esteem in women with physical disabilities is more strongly influenced by social and environmental factors than by the fact of having a disability.
More than three-quarters of the women with disabilities had high self-esteem and a positive body image. Whether the woman had a severe disability or a mild disability, incurred disability earlier or later in life, or had ever been in special education didn't make much difference in self-esteem.
Women who were working, who were in a serious romantic relationship, or who had never experienced physical or sexual abuse reported high self-esteem, whether or not they had a disability. Among women who were not working, not in a serious romantic relationship, or who had experienced physical or sexual abuse, the women with disabilities had much lower self-esteem than the women without disabilities.
3. Abuse is a very serious problem for women with disabilities. They have even fewer options for escaping or resolving the abuse than women in general.
The same percentage (62 percent) of women with and without disabilities had experienced emotional, physical, or sexual abuse, but women with disabilities experienced abuse for longer periods of time.
In addition to the types of abuse experienced by all women, women with disabilities were sometimes abused by withholding needed orthotic equipment (wheelchairs, braces), medications, transportation, or essential assistance with personal tasks, such as dressing or getting out of bed. Women with disabilities face serious barriers to accessing existing programs to help women remove violence from their lives.
4. Women with physical disabilities have as much sexual desire as women in general; however, they do not have as much opportunity for sexual activity.
Ninety-four percent of the women with disabilities had had sexual activity with a partner in their lifetime. Forty-nine percent were sexually active at the time of the study, compared to 61 percent of women without disabilities.
Forty-one percent of the women with disabilities believed that they did not have adequate information about how their disability affects their sexual functioning.
Women with disabilities reported significantly lower levels of sexual activity, sexual response, and satisfaction with their sex lives.
Level of sexual activity was not significantly related to severity of disability.
5. Women with physical disabilities encounter serious barriers to receiving general and reproductive health care.
Thirty-one percent of the women with physical disabilities who participated in this study were refused care by a physician because of their disability.
Women with physical disabilities reported considerable difficulty locating physicians who were knowledgeable about their disability to help them manage their pregnancy.
More women with physical disabilities reported chronic urinary tract infections, heart disease, depression, and osteoporosis at younger ages than the comparison group of women without disabilities.
There was a much higher rate of use of public health clinics, specialists, and emergency departments among women with disabilities compared to women without disabilities.
A total of 946 surveys were returned to us; however, some were not completely filled out. Also, some were completed by women who did not meet all the eligibility criteria for the study, that is, they were not between the ages of 18 and 65, or they had a disability that was not mobility-related, such as blindness or deafness. One survey had to be eliminated because it was completed by a man! Analyses were conducted on 881 questionnaires received from 475 women with disabilities and 406 able-bodied women who made up the comparison group.
The women who participated in this study represent every part of the United States and a wide variety of personal, social, and demographic characteristics. The women with and without disabilities in this sample were of similar racial background and socioeconomic status. The women without disabilities, however, were slightly younger, with an average age of 39 years compared to 42 years for the sample of women with disabilities.
Women with disabilities in this sample had the following characteristics. The most common primary disability type was spinal cord injury (26 percent), followed by polio (18 percent), neuromuscular disorders (12 percent), cerebral palsy (10 percent), multiple sclerosis (10 percent), joint and connective tissue disease (8 percent), and skeletal abnormalities (5 percent). Nearly half of the sample (49 percent) had disabilities since childhood (0-11 years old), 10 percent since adolescence (12-17 years old), and 41 percent since adulthood (18 years and over). Twenty-two percent had severe functional limitations, 52 percent had moderate disabilities, and 26 percent had mild disabilities.
Eighty-two percent were white, 9 percent African-American, 4 percent Hispanic, 2 percent Native American, and 2 percent Asian. Those living in urban or suburban areas comprised 89 percent of the sample, with 11% living in small towns or rural areas.
The sample was well educated, with 53 percent of the women with disabilities and 42 percent of the women without disabilities having college degrees. Fifty-nine percent were working for a salary part time or full time, compared to 86 percent of women without disabilities. The median annual personal income of the sample of women with disabilities was $15,000, with a household income of $25,000, compared to personal income for women without disabilities of $18,500 and household income of $32,000.
And as I get to know more and more of my self-worth, it sort of helps me to identify myself, thinking I am a woman created by God and I am so precious and I am so loved and I have so much beauty inside of me. I should let it come out. I should not hide it.
36-year-old polio survivor with scoliosis
I always felt that my body didn't belong to me.
26-year-old polio survivor
There is a long journey of discovery that many women with physical disabilities go through to acknowledge their value and their womanhood. That journey is fraught with assaults from every sector. For women disabled at birth or early in childhood, parents often expected that they will be dependent all of their lives, they must be protected from a cruel society, and they should never hope for much in life. For women disabled in adulthood, it is often a realization of their worst nightmare. They have grown up absorbing the social stereotype that women with disabilities are asexual and are a burden to their families, and they feel that this type of life has now been thrust upon them. One of the most powerful findings of this study was that the majority of women with physical disabilities were triumphant over these assaults. They are living lives of fulfillment and are active, contributing members of their community. We entered the study with questions about what factors made some women more resilient against social stereotypes that they should be asexual and dependent, why some women had a generally positive perception of themselves and others were more negative, and what role family and environment played in their development of sense of self.
The women with disabilities we interviewed who had a strongly positive sense of self tended to appreciate their own value, asserted their right to make choices that would improve their lives, felt ownership of their bodies, avoided allowing their sense of sexual self to be diminished by negative images associated with their disability, were accepting, not ashamed of their bodies, and took action to enhance their attractiveness.
In the national survey, we found that 78 percent of the women who had disabilities reported high or moderately high self-esteem. On average, however, they reported lower self-esteem than women without disabilities. Interestingly, this did not seem to be related only to having a disability. Whether the woman had a severe disability or a mild disability, incurred disability earlier or later in life, or had ever been in special education didn't make much difference in self-esteem. It was a combination of factors that seemed to make the difference. For example, women with disabilities who were in a serious relationship, worked, or were satisfied with their activities tended to have higher levels of self-esteem, about equal to that of women without disabilities. For women without disabilities, whether they worked or not was unrelated to their level of self-esteem. There was also an association between family expectations and self-esteem. Women with disabilities whose families never expected them to marry or live on their own were more likely to have lower self-esteem.
Abuse had a strong effect on lowering self-esteem. All women who reported any incident of physical or sexual abuse in their lives had significantly lower self-esteem than women who had never experienced abuse. Those women who had disabilities had even lower levels of self-esteem than women without disabilities who had been abused. When women with and without disabilities who had never been abused were compared, their levels of self-esteem were about the same.
Women with disabilities, on average, do indeed express stronger feelings of being asexual than women without disabilities. The percentage who had these feelings, however, was only a fraction of the sample as a whole (16 percent of women with disabilities compared to 8 percent of women without disabilities). Feelings of being asexual were about the same for women who had more severe or less severe disabilities, and women who had disabilities early in life compared to later in life.
There was also a difference in body image, with women with disabilities expressing, on average, more negative feelings. Women with disabilities face all the issues that women in general face in terms of body image (such as size, weight, breast size and shape, and physical fitness), but this is complicated by disability related issues. These issues include scars, deformities, disfigurement, abnormal expressions and gestures, the presence of devices such as wheelchairs, crutches, artificial limbs, and braces, devices for bowel and bladder management, and the possibility of public bowel and bladder accidents. Many women use clothing and grooming to draw attention away from parts of their body that are affected by their disability.
We identified three important factors that affect the sense of self of women with physical disabilities even more strongly than women without disabilities: 1) work, 2) relationships, and 3) abuse. Noticeably absent are factors related to the disability itself. Women with disabilities must deal with the combination of barriers and disincentives to employment faced by all people with disabilities and barriers to employment faced by women in our society. Findings from this study confirm census reports that they are much less likely to be employed than women without disabilities, even though on average they had a higher educational level in this sample, and that they have a lower personal and household income. Women with disabilities have significantly less opportunity to benefit from the positive effect on self-esteem that comes with economic independence. Similarly, as will be described in the next section, they have significantly less opportunity to benefit from the positive effects of establishing romantic relationships. Although abuse is seriously damaging to all women, it is associated with lower levels of self-esteem in women with disabilities.
The question remains whether women with disabilities have high self-esteem because they work, have romantic relationships, and have not experienced abuse, or whether they work, have romantic relationships, and have not experienced abuse as adults because they have high self-esteem. There is certainly need for further analysis of these data and additional studies to answer this question; however, the results obtained so far clearly indicate the importance of esteem building activities and programming for girls and women with disabilities, be they within families, in schools, in churches, incorporated in medical and vocational rehabilitation services, or in the community at large.
The only reason why it went into an intimate relationship was the fact that I felt trust again, and that I felt this person was caring enough that I could address these [disability] issues with him. I found myself the second time I met this person, discussing my disability. And the guy didn't run.
43-year-old woman with rheumatoid arthritis
The establishment of romantic relationships ranks very high in life's priorities for most women. Although considerable literature in various psychological and sociological disciplines examines the dynamics of interpersonal relationships, very little attention has been paid to the effect of disability on those relationships from the woman's perspective. The importance of socialization experiences in adolescence is generally acknowledged, but the fact that many girls with disabilities have limited access to those experiences due to attitudinal and environmental barriers has not gotten the attention it deserves from families, educators, and service providers. Studies that examine the various aspects of partner selection, factors that contribute to successful marriage, and factors that lead to the dissolution of relationships have also been well represented in the literature, but rarely has disability in women been included as a variable.
Our study offered the unprecedented opportunity to examine many unanswered questions about the relationship experiences of women with a variety of physical disabilities. We looked at personal factors, such as attitudes toward dating and marriage, sexual orientation, and disability type and severity; behavioral factors, such as dating patterns, number of marriages, and the effect of disability on the partner's behavior; and environmental factors, such as social attitudes and family expectations. In these analyses, we paid close attention to differences in the experiences of women who had acquired disability earlier versus later in life.
I seem to attract men who want to take care of me. My basic feeling was that they wanted me to be their doll.
46-year-old woman with bilateral upper extremity amputations since birth
I have never dated a man that has been as close as what I'd want him to be because I think it's the wheelchair that scares him away. They're afraid to get too close for some reason or other. I don't really know why that is. It's not that I hadn't tried.
37-year-old polio survivor
Women with disabilities were less satisfied with their dating frequency, perceived more constraints on attracting dating partners, and perceived more societal and personal barriers to dating than women without disabilities. Women with disabilities who were less satisfied with dating tended to have certain types of disabilities, such as stroke, cerebral palsy, muscular dystrophy, or traumatic brain injury; acquired their disability earlier in life; had more severe functional limitations; and had hearing and speech problems in addition to physical limitations. These women also tended to have higher educational levels and lower self-esteem.
More than half (58 percent) of the women with disabilities were single, compared to 45 percent of the women without disabilities. Regarding sexual orientation, 87 percent of the women with disabilities were attracted to men, 4 percent to women, 7 percent to both genders, and 2 percent to neither gender. The majority have been sexually active; 92 percent have had sex with a man, 16 percent with a woman, but 6 percent had never had sex with anyone. Women without disabilities were slightly more likely to have had sex with a man (94 percent), but were significantly more likely to have had sex with a woman (23 percent), or with both men and women (21percent).
Women who were disabled earlier in life tended to begin dating later than women who were disabled later in life or who were not disabled. Women with disabilities also tended to move away from home later than did women without disabilities. When the woman lived with her mother and her disability began in childhood, she was particularly susceptible to being overprotected. The women with disabilities whose parents encouraged dating and going out with friends tended to have more effective social skills.
The most troublesome problem for women with disabilities was attracting partners to date. Factors that were associated with problems in attracting partners were having low self-esteem, less education, communication impairments, and societal barriers to dating, such as someone being interested but not asking her out because of what others might say. Women who reported societal barriers to dating were those who had communication problems, a high level of functional impairment, and personal barriers to dating, such as rarely getting out of the house to meet people. Women with cerebral palsy, low self-esteem, or a high level of functional impairment perceived that they had personal barriers to dating. Even when women with disabilities were socially outgoing, with strong social skills and many friends, friendships were less likely to evolve into romantic relationships than they were for able-bodied women.
The timing of onset of disability, and the response to disability of family, friends, and society in general, were critical in establishing patterns of dating behaviors for women with physical disabilities. Parents who encouraged their teenager daughter to go out and meet people, who gave her the expectation that she could marry someday if she wished, who equipped her with the information and social skills she needed to attract dates, and most importantly, who made her feel valued and attractive, set the stage for having positive dating relationships. Laying a strong foundation for future adult relationships gave the woman with a disability the strength to deal with social prejudice against her dating as an adult. Conversely, parents who overprotected their daughter, who told her not to expect to date or to get married, or who were neglectful or abusive set the stage for unsuccessful attempts to establish dating relationships, repetitive exploitative relationships, or unplanned pregnancy.
Acquiring a disability during or immediately before adolescence disrupts dating, a crucial time for sexual rehearsal. In some cases, dealing with disability during this time period postponed dating or ended it altogether. In others, the girl strove to date anyone she could get, regardless of how badly he treated her, in an attempt to disprove her fears that she would never again be worthy of love.
Women who were injured or acquired a chronic disabling condition as an adult were faced with the challenge of learning how to date all over again with an often severely altered appearance and new functional limitations. They feel as though they have been thrown back to a situation akin to first dating as an adolescent. Women reported having no experience in how to interpret and deal with unexpected responses to their disability from potential dates. They must learn again to take risks, knowing that potential dates may reject them outright when faced with visible signs of disability, such as a wheelchair. Some women with disabilities who became involved in a relationship were overly agreeable to the partner's desires in an attempt to hold onto the relationship at any cost, even the loss of their identity, economic security, or safety.
For those who are already involved in a romantic relationship, the partner may not be able to deal with her disability and break off the relationship. Not knowing whom to trust or how to approach dating as a person with a disability, some women gave up and eschewed romantic relationships. Others adopted the societal view that they are no longer eligible for dating, that they have become asexual and should no longer expect anyone to be attracted to them.
The woman who is able to successfully master the challenge of dating with a disability achieves a new stage of personal growth. Despite such obstacles, many women reported eventually forming a long-term relationship with a partner who accepted their disability while cherishing the unique characteristics they had to offer.
I have considered getting one of those electric carts, but every time I bring it up, my husband says, oh, you don't need that, just stay home. If this ever gets worse, maybe he'll consider it, but right now, he wants to deny still that there's any disability.
38-year-old woman with lupus
I felt the rejection from my spouse, and as I got worse physically, the rejection was even more, in the sense that he wouldn't touch me, we didn't hold hands, there was no hugging.
43-year-old woman with rapidly progressing rheumatoid arthritis
Although significantly more women without disabilities had been married or lived with someone in a serious relationship, the majority of women with disabilities had also experienced a serious romantic relationship at some time. Women without disabilities were more likely to be married (38 percent versus 33 percent), divorced (22 percent versus 18 percent), or currently separated (4 percent versus 2 percent) than were women with disabilities. Age at first marriage for women with disabilities (24 years) did not differ significantly from the age at which able-bodied women first married (22 years). More women with disabilities were widows (4 percent versus 2 percent). Marital status was not related to severity of functional impairment. Of the reasons given for not being married or in a serious relationship currently, the most frequently selected reason regardless of disability status was, "I haven't found the right person." For women with disabilities, the second most frequently selected reason (42 percent), "No one has asked me," was chosen by 27 percent of women without disabilities. This reason was followed in frequency by "I am concentrating on other areas of my life," and "My disability makes it unlikely." Other reasons chosen, but less frequently, were, "I would lose too much of my independence" and "I would lose some benefits such as SSI or SSDI." The vast majority of women with disabilities believed that they had enough privacy for intimate relationships, even if they needed help with daily activities. Twenty-five percent said that their spouse was providing all of their personal assistance.
Women who have been disabled since birth or during childhood often had the same desires as non-disabled girls to get married when they grew up. Their families, however, often told them not to expect to get married, to get an education instead. Some were told that they're incapable of being a housewife or taking care of a baby, so no one would want to marry them.
A woman with a disability may blame herself for everything that goes wrong in a relationship, believing that having a disability is causing all the problems, and constantly apologize for events that were not her fault. Her husband may take advantage of her self-blame and collude in blaming all marital problems on her disability. Nearly half of women with disabilities sometimes felt like a burden to their partners.
Acquiring a disability or a marked increase in physical impairment while involved in a serious relationship can have a great impact on the relationship or marriage, as noted by three-quarters of women with disabilities. Nearly half indicated that the relationship suffered when they could no longer do as much housework or when they had to give up doing a lot of activities that the couple enjoyed together. If the relationship was based primarily on participating in sports together that the woman with a disability is no longer able to do, the husband may stop doing anything with his wife and seek companionship with other women. Survival of the marriage may depend on the two of them finding other activities that they can enjoy together. Nearly three-quarters of women with disabilities said that their partner did understand the nature of their physical limitations.
When a disability was acquired or worsened during marriage, 42 percent of the women felt that their partner became emotionally distant, they were no longer compatible (35 percent), the partner stopped treating them with respect (31 percent), or the partner stopped wanting them sexually (30 percent). Some of the partners became overprotective and tried to do too much for them when they became disabled or more disabled (18 percent). Nevertheless, more than half of the women with disabilities believed that disability was not a major cause of the end of their marriage or other serious relationship. Women without disabilities (52 percent) were as likely as those with disabilities (49 percent) to have stayed in a marriage or serious relationship that they wanted to leave. Among women who had children, women with disabilities were significantly more likely (23 percent) than those without disabilities (16 percent) to have stayed in a bad marriage for fear of losing custody of their children.
Women with physical disabilities face limited opportunities to establish romantic relationships. Many women were raised in overprotective families that discouraged involvement in activities where they could learn social skills. Those who depend on parents for personal care often have few opportunities to live on their own and establish independent social lives. Environmental barriers, such as lack of transportation or accessible recreational facilities, also inhibit social activities. Most damaging are the attitudes and assumptions of society about women and women with disabilities that create many barriers in the minds of the general public about the romantic potential of women whose bodies do not meet the social norm. We see the effects of these attitudes in the many reports of women with disabilities about struggling to attract a partner and the low rates of marriage. These findings point to the need for encouraging and expanding socialization opportunities in integrated settings for girls and women with disabilities.
Part of the reason why I didn't see a gynecologist until I was 28 years old was because I was scared to go because I was afraid of what she would tell me. I was afraid that she would say you can't have sexual relations. And in my early twenties, that wasn't a problem because I didn't have a boyfriend. I blocked it out is basically what I did. I just didn't want to find out. Another scary thing for me is going to the gynecologist and finding out that I may not possibly be able to carry a child.
33-year-old woman with cerebral palsy
Studies that have been done on women in the general population show that they learned about sex primarily from their friends. For younger generations, more and more information is gained from school and parents. The social isolation experienced by women with disabilities, combined with the stereotype that they have no interest in sexuality, are serious barriers to obtaining information. Some girls with disabilities have fewer opportunities to interact with their peers. Older women with disabilities were raised in a time when the stereotype was even stronger about sex, and sexuality was considered inappropriate for persons with disabilities. In the public schools of that time, even if girls with disabilities were in classes with their able-bodied peers, they may have been excused from health and physical education classes where important basic information on reproductive health may have been taught. With the establishment of integrated educational systems mandated by legislation first enacted in the mid 1970s, we are seeing more opportunities for girls with disabilities to learn about health and sexuality, both from classes and from peer interaction. In the national survey, we were interested in finding out when and from whom women with disabilities learned about sex and sexuality, and whether or not they believed they had received adequate information about how their disability affected their ability to maintain good reproductive health and bear children.
The women with disabilities we interviewed told us about numerous frustrations in getting information about sexuality and reproductive health. Like women in general, most learned very little from their families or schools. Some did receive information, but thought that because they had a disability, it didn't apply to them. Many had no idea growing up how their disability would affect their ability to have sex or bear children. They reported learning the most in answer to their questions from friends, books, romantic partners, and, unfortunately, violent experience. Those who received formal rehabilitation reported that sexuality classes predominantly dealt with issues of men and were offered too early during recovery when they had other, more pressing concerns. Many women who received information about sexuality and disability decades ago believe that they have not had the opportunity to gain more current and correct information.
The national survey showed that women with and without disabilities learned about sex and sexuality from generally the same sources, but in a different order of frequency. Women with disabilities listed their sources as books and printed materials first, then their partner, friends, and having sex. Women without disabilities listed having sex first, then their partner, books and printed material, and friends. On average, both groups learned about the physical aspects of sex at about the same age, 13 years old. Only 59 percent of the women with disabilities believed that they had received adequate information about how their disability affects their sexual functioning.
When given a list of professionals who give information and/or advice about sexuality, both groups indicated with the same order of frequency those who had helped them. Gynecologists were selected the most often, then family physicians, and psychologists. For women with disabilities, the fourth most frequently checked category was rehabilitation counselors, but for women without disabilities, it was members of the clergy.
Women with disabilities are able to obtain information about sexuality, but in different ways and often after more of a struggle than women without disabilities. Whereas most women learn about sex more from direct experience with romantic partners, women with disabilities have limited opportunities to have such experiences and to gain sexual knowledge through such means. Women with disabilities who were growing up before the integrated education laws of the 1970s faced even more serious barriers to obtaining information on reproductive health and sexuality. A large portion of this sample of women believed that they had never received the information they needed to understand how their disability affects their sexual functioning and their ability to bear children. There is a strong need for sex education programs offered through the public schools, community organizations, churches, or other resources to be equally available to women with disabilities and to include the message that disability need not be a barrier to a healthy, satisfying sex life. Programs offered in medical rehabilitation settings must offer equal time and information on the sexuality issues of women. Parents must overcome the fears and overprotectiveness that prevent them from imparting sexuality information to their daughters with disabilities. They must communicate the attitude that their daughters will grow up to be valuable, sexual, and marriageable women.
In the movies, the woman can go and she can jump on the guy's lap and do all these gymnastic things, but I have to get him to put me in bed. That takes out some of the spontaneity, but it doesn't take out the thrill.
37-year-old married polio survivor
I think my disability has affected my response to sex and this happens with a lot of MS people. I am not easily aroused. It takes a lot of patience and I'm very grateful that my husband has had a lot of patience. I do not probably respond as fast as most females do to sexual stimulation.
51-year-old married woman with multiple sclerosis and post-polio syndrome
I still pee sometimes during sex. It's just one of those things where you just have to lay a towel down. Or get the mat out. That's what we do, get the mat and the towel. It's no big deal to him.
26-year-old married woman with paraplegia
One of our investigators who has a severe physical disability was overheard saying, "I'm sure I could function just fine sexually, if I could only find a man!" This illustrates one of the main dilemmas facing women with disabilities. Social attitudes constitute a significant, if not insurmountable, barrier to realizing sexual potential. For this reason, many of the questionnaires that have been developed and validated for assessing sexual functioning for women in the general population are not relevant when applied to women with disabilities. They tend to focus on frequency of sexual activities of various sorts. For women with physical disabilities, frequency is more often a reflection of opportunity rather than interest or ability. To circumvent this problem, we let the assessment of sexual functioning in this study generate from the comments of the women themselves. In the interviews that preceded the national survey, the participants spoke about intimate touch as much as sexual intercourse. Sexual functioning for them included a broad range of activities. Throughout the survey, we were very careful to use the term "partner" as opposed to "boyfriend" or "husband" to allow accurate responses from homosexual or bisexual participants. We assessed sexual functioning in terms of desire, both fulfilled and unfulfilled, frequency of sexual activities, satisfaction with sexual activities, and physical problems encountered. We also examined the influence of various psychological, social, and environmental factors on level of sexual activity and degree of satisfaction with sex life.
Almost all of the women with and without disabilities in this study reported having had sexual activity at some time in their lives. Only 3 percent of the able-bodied women and 6 percent of women with disabilities had never had sexual intercourse. About half of women with disabilities are currently sexually active, compared to about two-thirds of women without disabilities. There were, however, significantly lower rates among women with disabilities of having intimate touch (58 percent versus 68 percent) and sexual intercourse (49% versus 61%) within the past month. Most problems with sexual activity reported by women with disabilities were different from those reported by women without disabilities. Women with disabilities reported that problems with sexual activity often related to weakness (40 percent), vaginal dryness (39 percent), lack of balance (38 percent), hip or knee pain (32 percent), and spasticity of legs (28 percent).
The women with disabilities we interviewed for this study talked about sexuality in terms of desire, activity, response, and satisfaction with their sex lives. We first investigated whether or not there were differences between women with and without disabilities on these four dimensions. We found significant differences in level of sexual activity, response, and satisfaction, with women with disabilities reporting much lower levels. There were no differences, however, between the groups on sexual desire.
Next, we wanted to know if age at onset of disability made any difference in sexual functioning. There were no differences in levels of sexual activity, response, or overall satisfaction with sex life. Women who had childhood onset of disability reported higher levels of sexual desire than women with adolescent or adult onset of disability.
Finally, we examined how psychological factors and factors related to disability, social status, social attitudes, or environmental barriers affected sexual functioning among women with physical disabilities. Sexual desire was most related to social status variables, including work status and age. Women who were younger expressed more sexual desire. Women who perceived more negative stereotypes in society's attitude toward sexuality and disability experienced higher levels of sexual desire.
The strongest predictor of sexual activity was, not surprisingly, whether or not the woman lived with a significant other. Secondary predictors were in the psychological domain. Women with disabilities who had a more positive sexual self image and who perceived themselves to be approachable by potential romantic partners also had higher levels of sexual activity. It is very notable that severity of disability was not significantly related to level of sexual activity.
We were not successful in predicting sexual response. The only factors that had some relationship were more positive attitudes toward the use of assistive devices, less concern about stereotypes, and higher household income. It is difficult to interpret the meaning of this finding. Women with spinal cord injury and stroke reported the lowest scores.
Social status and psychological variables were the best predictors of sexual satisfaction. Women with disabilities who lived together with a significant other, and therefore had a higher level of sexual activity, also reported greater sexual satisfaction. Interestingly, lower household income was positively associated with sexual satisfaction. Women who felt more positive about their use of assistive devices and who had never experienced sexual abuse reported higher levels of sexual satisfaction.
Most of the differences in sexual functioning between women with and without disabilities can be accounted for by the difficulties women with disabilities experience in finding a romantic partner. Level of sexual desire was the same, but level of activity was less because significantly fewer women with disabilities had partners, and, therefore, level of satisfaction was less. For women who had a partner, levels of sexual activity were about the same, regardless of disability, but level of satisfaction with sex life was still lower for women with disabilities. It was interesting to note that severity of disability was not related to level of sexual functioning or satisfaction with sex life. It must be acknowledged, however, that in some cases problems related to disability, such as weakness, pain, or spasticity, can affect the physical aspects of sexual functioning; and problems associated with certain types of disabilities, such as the neurologic effects of spinal cord injury, stroke, or multiple sclerosis, can affect sexual response. There is a need for more medical research and collaboration with physicians and physical therapists on ways that weakness, pain, and spasticity can be managed to allow for more satisfaction from sexual activity. In previous sections, we have discussed the importance of expanding opportunities for self-esteem building and socialization activities for women with physical disabilities. If significant progress can be made in those areas, improvements in sexual functioning will follow.
Could you believe that all through my pregnancy so far they don't know how much weight I've gained, because they don't have a wheelchair or sitting scale or nothing. They don't monitor my weight at all.
33-year-old woman with cerebral palsy
Special concerns during pregnancy vary for women with different types of disabilities. We know from this study that women with disabilities are less likely to become pregnant than women in general; therefore, it is difficult to find enough women with a particular type of disability to participate in a survey, even one as large as this, so that we can draw valid conclusions. We chose to examine the pregnancy experiences of the 120 women with spinal cord injury who participated in this study because it was the largest subgroup in the sample.
Few clinicians are informed about the pregnancy outcomes of women with spinal cord injury, or SCI. Yet the majority of women who acquire a SCI are of childbearing age. Recent ten-year hospital studies indicate an increasing number of births among women with traumatic spinal cord injury. However, few clinicians have experience managing pregnancy, labor, and delivery in women with SCI. Therefore, clinical guidelines for this population are often based on case reports or small case series, which tend to report the most unusual and serious problems rather than uncomplicated cases. Unfounded assumptions of poor outcomes may influence clinicians to behave as though risks are greater than they actually are for most women with SCI and practice defensive medicine. If the chance for a positive pregnancy outcome is considered slim, or threat to the mother's life too high, clinicians may encourage women who want to have their babies to have unnecessary or undesired therapeutic abortions.
In these analyses, we examined whether women with SCI are at higher risk of specific pregnancy-related complications than are women without disabilities.
Thirty-seven percent of the women with disabilities had natural children compared to half of the able-bodied comparison group. No significant difference was found between the groups in the rate of miscarriages, abortions, or stillbirths.
Among 120 women with spinal cord injury, 52 (43 percent) had been pregnant, and 21 had pregnancies diagnosed after onset of injury. Pregnancy was impossible for 31 percent due to tubal ligation (11percent) or hysterectomy (15 percent). Significantly more women without disabilities (50 percent) had live births compared to 18 percent of women after spinal cord injury, a frequency that is consistent with the 10-20 percent rate of births found in other studies. Fewer women with SCI had miscarriages (11 percent) compared with 17 percent of women without disabilities, whereas the number of reported induced abortions and stillbirths was about equal in both groups.
Certain prenatal complications were more prevalent among women with SCI than among women without disabilities. Ten percent of women with SCI, and 5.47 percent of women without disabilities, had gestational diabetes, but this difference was not significant. Significantly more women with SCI had bladder and kidney infections during pregnancy, with 52 percent and 29 percent of SCI women having had bladder and kidney infections, respectively, compared to 17 percent and 8 percent of non-disabled women.
Both autonomic hyperreflexia (32 percent) and preeclampsia (38 percent) were found at relatively high rates among women with SCI; only 13 percent of women without disabilities had preeclampsia. Yet there was no significant difference between the two groups for frequency of pre-term labor (33 percent versus 22 percent); pre-term delivery (29 percent versus 18 percent); or low birth weight (14 percent versus 15 percent), despite a typical increased risk of these complications in association with autonomic hyperreflexia and preeclampsia. Frequency of failure to progress during labor was also similar between the two groups (24 percent versus 18 percent).
Other studies have found a higher prevalence of these complications among women with spinal cord injury. The lack of significant differences in complication frequency between our two groups may reflect limitations in the research design. The sample size of women with SCI who had been pregnant after injury is extremely small (21) compared to the size of the group of women without disabilities who had been pregnant (220). Objective hospital data to corroborate self-report data were not available with our written questionnaire method. Also, women who gave birth many years ago may not recall some details of their pregnancy and birth experience.
Physicians and women with spinal cord injuries themselves often operate under the misconception that pregnancy following spinal cord injury should be avoided. Consequently, women with disabilities report difficulty in finding obstetricians or midwives willing to assist them with their "high risk" pregnancies. However, the results of our study confirm findings from other studies that normal labor and delivery are possible, even routine, and generally pose little or no added risk to the mother or baby. Physicians do need to be alerted to possible complications associated with spinal cord injury such as severe autonomic hyperreflexia in women with lesions at or above the T6 level, respiratory compromise, skin breakdown, increased risk of urinary tract infections, increased spasticity, and medications commonly used in SCI that could be toxic to the fetus.
When I was going through my separation, I realized that my ex-spouse at the time was involved in other relationships and he ended up giving me a venereal disease in the process. It was venereal warts. I was miserable. They (gynecologists) said this (treatment) will take care of it, and you'll never have it again. I did not know that it (warts) was continuous. They did not say that this you would have for the rest of your life and that it could flare up again and that you could pass it on. When I began to read current information about it, that's when I totally got upset. I wanted to make sure I was safe, and not only safe, but my (next) partner was safe.
43-year-old woman with rheumatoid arthritis
Health care providers may mistakenly assume that women with disabilities are not sexually active, especially if their disability is disfiguring or severe, and neglect to screen for sexually transmitted diseases, or STDs. Women with disabilities may be less likely to complain of symptoms suggesting an STD because mobility and sensory impairments may prevent them from noticing a rash or vaginal discharge, or from feeling pain and itching. Therefore, STDs are less likely to be detected and treated in women with disabilities, which could put them in jeopardy of getting pelvic inflammatory disease, or PID and increasing their risk of cervical cancer, contracting HIV, ectopic pregnancy, and infertility. We asked women who participated in this study to indicate whether or not they had experienced sexually transmitted disease at any time in their lives, and if so, the type of STD.
Our study dispelled this myth of asexuality in that most of the women with disabilities had been sexually active (94 percent), making them as susceptible as women without disabilities to getting STDs. In fact, the prevalence of STDs overall was similar in the two groups, slightly more than one-fifth of the sample. Women with and without disabilities were about equally likely to have had syphilis (.4 percent vs. .5 percent), gonorrhea (4 percent vs. 5 percent), chlamydia (7 percent each), Trichomonas (11 percent each), genital warts (8 percent vs. 10 percent), or pubic lice (11 percent each). However, women with disabilities were significantly less likely to have had genital herpes (3 percent vs. 7 percent) or a non-specific STD (3 percent vs. 5 percent). No one in either group reported being HIV positive. These rates may be higher in both groups, since STDs tend to be under-reported and medical records were not available to corroborate the self-reported data. It is also possible that fewer cases have been detected among women with disabilities because they may be less likely to report symptoms, and physicians who perceive a lack of risk for STD's may not test for them.
Our findings indicate that getting information about STDs and safe sex practices is as important for women with disabilities as it is for any sexually active woman. Health care providers should not wait until the woman brings up the subject because some women with early-onset disabilities may have been sheltered from getting sexually related information, or may have grown up believing that their bodies are so different from able bodies that they are not susceptible to getting the same diseases. Also, because of lack of sensation or the inability to notice unusual vaginal discharge or sores, women may not be prompted to seek medical attention until symptoms have reached an advanced stage, when complications are much more likely. Illustrations in consumer literature about STDs should include women with disabilities to help dispel misconceptions and lack of awareness.
My mother wasn't around much, and I always felt in my sisters' way, like I held them back from things they wanted because they had to help care for me. My sisters would slap me and shut me in my room.
32-year-old woman with congenital osteogenesis imperfecta
After my child was born, my husband became jealous and didn't want me to get up and take care of her. He would take my chair away from me and tied me up when I pulled myself out of bed. I left him the first chance I had.
49-year-old woman with spinal cord injury since age 17
The issue of abuse emerged from this study with unexpected force. We were unprepared and found we had a lot of homework to do. On examining the literature on abuse of both women in general and women with disabilities, we found very little crossover. Although there has been a wealth of research on domestic violence and sexual assault against women, with clearly defined variables and strong scientific methodology, it almost never incorporates the element of disability. The literature in the disability arena has focused mostly on abuse of developmentally disabled children. A few studies have looked at the situation of women with disabilities; however, concepts are not well defined and the samples mix children and adults, and include the full spectrum of mental, sensory, and physical disabilities. Further, we found that the system of programs for battered women was only beginning to incorporate the need for accessibility for women with disabilities, and the system of disability-related services was almost totally unprepared to deal with issues of abuse. This is indeed new territory.
In the national survey we defined emotional abuse as being threatened, terrorized, corrupted, or severely rejected, isolated, ignored, or verbally attacked. Physical abuse is any form of violence against the body, such as being hit, kicked, restrained, or deprived of food or water. Sexual abuse was defined as being forced, threatened, or deceived into sexual activities ranging from looking or touching to intercourse or rape. In the survey, we included questions about which of these three types of abuse the women had experienced, and, for each experience, the age at which the abuse began and ended and their relationship to the perpetrator. Analyses we have conducted so far examined differences in the rates and types of abuse experienced by women with and without disabilities
Twenty-five of the 31 women with disabilities we interviewed in the first part of this study told us about 55 separate experiences of abuse. In many cases, these experiences strongly affected the way the women felt about themselves and their ability to engage in satisfying romantic relationships. Although most incidents of abuse were similar to those women in general experience, such as verbally abusive parents or partners, battering, and rape, some types of abuse were specifically disability related, such as withholding needed orthotic equipment (wheelchairs, braces), medications, transportation, or essential assistance with personal tasks, such as dressing or getting out of bed. Some factors that increase the vulnerability to abuse among women with disabilities are their physical difficulty in escaping dangerous or abusive situations, a need for assistance with personal tasks from the perpetrator, their higher rate of exposure to institutional facilities (including hospitals), and the stereotype that they are dependent, passive, and easy prey.
The national survey showed, however, that overall, women with disabilities appear to be at risk for emotional, physical, and sexual abuse to the same extent as women without disabilities. The prevalence of any abuse (including emotional, physical or sexual abuse) for women with and without disabilities was 62 percent for both. About the same proportion of women with disabilities compared to women without disabilities reported emotional abuse (52 percent versus 48 percent), physical abuse (36 percent for both), or sexual abuse (40 percent vs. 37 percent). When the categories of physical and sexual abuse were combined, 52 percent of women with disabilities and 51 percent of women without disabilities responded positively. None of these types of abuse was significantly different for women with or without disabilities.
In the survey, husbands and live-in partners were included in the same category. More husbands abused women (both with and without disabilities) emotionally (26 percent) and physically (17 percent and 19 percent) than other perpetrators. Parents were the next most common perpetrators of emotional and physical abuse for both groups of women. Strangers were the most often cited perpetrators of sexual abuse for both groups (11 percent for women with disabilities and 12 percent for women without disabilities).
Women with disabilities were significantly more likely to experience emotional abuse by attendants, strangers, or health care providers than women without disabilities. There was a trend for more women with disabilities to experience emotional abuse by mothers, brothers, and other family members, as well. Two percent of women with disabilities were physically or sexually abused by attendants. There was a trend for women with disabilities to be more likely to experience sexual abuse by health care providers.
Women who had experienced abuse that lasted longer than a single incident were examined to determine differences in the duration of abuse. Women with disabilities experienced all types of abuse (emotional, physical, or sexual) for significantly longer periods of time than women without disabilities.
Women with disabilities face the same risks of abuse that all women face, plus additional risks specifically related to their disability. Rates of abuse were extremely high in both groups of women in this study. It is notable that women with disabilities tended to experience abuse for longer periods of time, reflecting the reduced number of escape options open to them due to more severe economic dependence, the need for assistance with personal care, environmental barriers, and social isolation. It is difficult to separate the effect of disability from the effects of poverty, low self esteem, and family background in identifying the precursors to violence against this population. There is much more that we need to know about how women with disabilities escape or resolve abusive situations. This study has shown the critical magnitude of this problem. Steps must be taken to train girls and women with disabilities to understand inappropriate touch, including in medical settings, and to learn how to recognize and avoid or resolve abusive situations in the family and in the community. Important elements in this training are informing women that they do not need to tolerate abuse and linking them to community resources that could help them expand their options for removing violence from their lives. Consider this a loud call for advocacy to make all programs for battered women fully accessible, and all disability service programs equipped to identify abused women and refer them appropriately.
I've had a disability for 45 years and I'm dealing with it just fine. But what's with all this new stuff, all these aches and pains? Breathing is getting worse, circulation is getting worse, bladder is giving me problems now. I'm too young to be feeling so old!
45-year-old woman with a neuromuscular disorder
The Centers for Disease Control and Prevention has funded a cadre of researchers to study the onset of new health problems among people with physical disabilities. These studies have begun to shed some light on the types of conditions people with disabilities experience as they age and on secondary prevention, that is, ways in which people with disabilities can get information on their options for medications, therapies, or lifestyle changes that could help them avoid acquiring new health problems that may or may not be directly related to their primary disability. Not much is known, however, about how the course of disability can lead to chronic conditions among women. In our survey, we gave a list of 15 chronic health problems that have been discussed in the literature and asked the participants to indicate which ones they have experienced. We analyzed the prevalence of each condition among the women with disabilities compared to the women without disabilities. For some of the conditions that were significantly more prevalent among women with disabilities, we examined factors that may distinguish those who have the condition from those who do not.
Women with physical disabilities reported chronic conditions more often than the comparison group without disabilities, and at younger ages. As women with disabilities age, a greater number of them report having chronic conditions than women without disabilities. Significantly more women with disabilities reported having chronic urinary tract infections (18 percent), major depression (17 percent), osteoporosis (12 percent), restrictive lung disease (6 percent), inflammatory bowel disease (6 percent), heart disease (5 percent), seizure disorder (5 percent), and kidney disease (3 percent) than the able bodied comparison group.
Urinary Tract Infection
Although chronic urinary tract infection was more prevalent among women with disabilities than women without disabilities, it was associated primarily with disorders characterized by neurogenic bladder, such as spinal cord injury (35 percent), multiple sclerosis (30 percent), and cerebral palsy (17 percent). However, 6 percent of women with polio had chronic UTI despite a presumably neurologically intact bladder. Factors that promote urinary tract infection in women with mobility impairment need further investigation, but may include difficulty in maintaining adequate cleanliness, restricting fluid intake to reduce the number of trips to the rest room or avoid searching for accessible rest rooms, contaminated catheterization, infrequent urination, and excess sweating with prolonged sitting in a wheelchair.
The rate of diagnosed major depression was significantly higher for women with disabilities between the ages of 18 and 49 compared to younger women without disabilities. Among women age 50 or older, there was no difference between the two groups. The rate of depression was significantly different by disability type. The highest rate was in women with spina bifida (39 percent), with 25 percent or more in women with amputation, traumatic brain injury, and multiple sclerosis. The lowest rate was in women with spinal cord injury. There is a need for a more thorough investigation of depression in this population. Previous studies have used measures of depression that contain questions about fatigue and weakness, symptoms that, for women with physical disabilities, may be more reflective of the disability itself than of depression. We need to gain a better understanding of the role social support, social attitudes, and environmental barriers might play in engendering feelings of being devalued and overwhelmed by life that can lead to clinical depression.
Lack of weight-bearing is a known risk factor for osteoporosis. Therefore, we predicted that women with mobility impairments would be at increased risk of getting osteoporosis at an earlier age. Most women are unaware that they have osteoporosis until spinal fractures are detected or they acquire fractures during a fall or while conducting ordinary daily activities. Therefore, it is remarkable that osteoporosis had already been diagnosed in women in their 30's with disabilities in our study. In this study, the women with disabilities had seven times the risk of getting osteoporosis as the women without disabilities. Research is needed on treatment that would delay the onset of osteoporosis among susceptible women with disabilities as well as on the most efficacious treatment to arrest its progress in the early stages in this population. Information on the osteoporosis experienced by younger women with mobility impairments may emerge from the medical experiments done by NASA's space program. Researchers have observed that immobilization produces a similar pattern of bone density loss as micro-gravity.
The leading cause of death in women, like men, is coronary artery disease. Having a primary disability such as spinal cord injury, cerebral palsy, muscular dystrophy, or amputation does not exempt women from also acquiring heart disease. However, physicians are more likely to attribute symptoms suggesting angina in women to non-cardiac causes. When a woman also has a disability, the physician may be more likely to assume that chest pain and other symptoms are related to her underlying disabling condition. If the woman has impairment of sensation, she may experience silent ischemia, a phenomenon also noted in advanced diabetes. Other women with disabilities have atypical, nonspecific symptoms like indigestion. The disabling effects of heart disease may compound those from the primary disability, increasing total functional disability. The few studies of heart disease in people with disabilities have used primarily male subjects. Is cardiovascular disease as rare in premenopausal women with disabilities as it is in premenopausal women without disabilities?
Among the 881 respondents, 33 women self-reported having heart disease, including 23 of the 475 (5 percent) women with physical disabilities and 10 of the 406 (2.5 percent) of those without disabilities. The difference in prevalence of heart disease between these two groups approached significance when examined for all age groups. As age increased, both groups experienced an increase in risk of having heart disease. There was no difference in prevalence of heart disease when post-menopausal women with and without disabilities were compared. However, among pre-menopausal women aged 18-49 years, the number of cases of heart disease was significantly higher among women with disabilities; 17 (5 percent) of women with disabilities reported heart disease compared to 4 (1 percent) of the able-bodied comparison group.
Further studies are needed to investigate the association of known risk factors for heart disease among women with disabilities. Several factors are known to increase the risk for acquiring or accelerating the onset of coronary heart disease, but with worse outcomes in women. These risk factors include diabetes mellitus, smoking, hypertension, physical inactivity, obesity, high cholesterol, low levels of high density lipoproteins, or HDL and post-menopausal status. Although these same risk factors can be expected to promote heart disease in women with disabilities, there has been no examination of the extent to which the additional presence of disability and limitations in the ability to exercise effectively may increase the degree of risk. Does having other chronic conditions also increase or change the risk profile of women with disabilities? Do women with disabilities have other risk factors for heart disease that are not found among women without disabilities?
Urinary tract infection, depression, osteoporosis, and heart disease are health problems that are faced more often by women with certain physical disabilities than by women without disabilities. It would not be fair to say that these conditions are entirely preventable; however, it is very possible that rates could be reduced by informing women with disabilities about their increased risk and offering suggestions on what they could do to reduce their risk or delay the onset of diseases of aging. When we presented our findings on chronic conditions to a group of physicians, the response was essentially a lack of surprise. The medical profession has, for many years, understood that these conditions are an inevitable consequence of physical disability and not enough is known about how to alter the course. The message we received from our participants was that they are not content to live with such resignation. They want information and they want solutions. Much more research is needed before we can make specific recommendations on how chronic conditions can be prevented in women with physical disabilities. The Center for Research on Women with Disabilities was fortunate to receive new funding in 1996 from the National Institutes of Health to pursue some of this research, particularly as it relates to strategies used by women with physical disabilities to avoid chronic conditions and maintain good health. It is our hope that other researchers, clinicians, and health educators will take an increased interest in some of these questions and assist in expanding the body of health information available to women with disabilities.
Motivation for maintaining good health practices has to come from within me. I can't let my family pressure me into trying to do some sport or activity that I know is physically impossible. They have to learn to accept my limitations. I only want to do those activities that I know I am capable of and am comfortable doing.
32-year-old woman with cerebral palsy
Maintaining good health as a woman with a physical disability demands essentially the same precautions and proactive measures as for all women, with a few extra challenges. Keeping a diet that is low in fat is always advisable, but women with severe functional limitations may have to rely on attendants or friends to cook for them, making it harder to control the nutritional content of the meal. Others may be forced to skip meals to divide limited attendant hours among eating, bathing, and other essential activities. We all know to avoid carcinogens like cigarette smoke, but might there be an even greater negative effect for women who are less mobile or already have impaired breathing? Exercise seems to be a universal recommendation for maintaining good health, but for women with physical disabilities, options for exercise may be seriously limited by a lack of accessible equipment and facilities, a lack of information about what type of exercise is best for them, or the severity of their physical impairment itself. In the literature there has been considerable analysis of how an individual's beliefs about her health affect her health maintenance behaviors. We are concerned that the common stereotype that people with disabilities are sick may promote "sick role" behaviors, that is, passivity and exemption from the responsibilities of life. In the interview phase of this study, we analyzed factors that were associated with wellness. We found that women who led active, healthy lives had high self-esteem, and proactively sought out and followed information about how they could maximize their health. In the national survey, we included questions about whether or not participants followed a list of health maintenance behaviors, as well as questions about their height and weight in order to calculate their body mass index.
We asked participants to indicate which health maintenance behaviors they practiced. No significant differences were found between women with disabilities and women without disabilities in eating a balanced diet (77 percent versus 73 percent), getting adequate rest (73 percent versus 73 percent), maintaining a healthy weight (61% versus 56%), moderation in alcohol consumption (81percent versus 81 percent), not smoking (68 percent versus 66 percent), and not using recreational drugs (69 percent versus 72 percent). Significantly fewer women with disabilities, however, reported that they exercised regularly (46 percent versus 73 percent).
Our finding that women with and without disabilities do not differ substantially on maintaining a healthy weight was based on a body mass index analysis (weight in kilograms divided by height in meters squared). The average body mass index of women with disabilities was 26 kg/m2 (the standard for normal is 20-25 kg/m2). About the same percentage of women with and without disabilities were in the various obesity categories (23 percent versus 28 percent); however, significantly more women with disabilities were in a lower BMI category (20 percent versus 11 percent). Little exists in the literature about appropriate goal BMI for women with specific disabilities. In our sample, women with spinal cord injury or neuromuscular disorders were more likely to fall into the <20 kg/m2 category than those with other disabilities, which is not surprising in light of the degree of loss of muscle mass in these disorders. More women with post-polio and multiple sclerosis were in the moderately obese category than women with other disabilities. We wanted to know if whether or not a woman smoked, maintained a healthy diet, exercised, or had hypertension was associated with obesity. For women without disabilities, there was an association with diet, exercise, and hypertension. For women with spinal cord injuries, obesity was associated with high blood pressure. For women with post-polio, obesity was associated with lack of exercise.
We now have evidence that women with disabilities practice about the same health maintenance behaviors as women without disabilities, with one important exception, exercise. Many factors may contribute to this difference, including a lack of accessible exercise equipment and facilities, fatigue, pain, and weakness that may be related to disability, a lack of time that may result from the increased effort needed to execute daily living tasks, warnings from physicians that exercise may aggravate the disability, or the assumption that there is little benefit to exercise if you have a disability. We heard from many women who struggle to obtain information about what type of exercise could benefit them and what regimes they could follow to maintain optimal health. Research is needed on how to determine ideal body weight for women with physical disabilities, what the health and functional impact of increased body weight is, and whether some disabling conditions increase the risk of obesity or malnourishment. We have only begun our investigation of health maintenance for women with physical disabilities. In the next three years, we will be examining in more depth factors that are associated with wellness in this population and strategies that could help women with disabilities strengthen their belief in their capacity for good health and increase their health maintenance behaviors.
Right before we got married, I went to a doctor that someone recommended and told him I wanted to know what form of birth control to take. He told me that I needed to have my uterus removed. He said, "Well, you should never have children because it's very dangerous."
37-year-old polio survivor
It seems like the default recommendation for women with severe physical disabilities is to have a hysterectomy. We received many reports that physicians assume women with disabilities would not be able to have children safely or that by removing the uterus, they could save them years of monthly trouble with menstruation. It is truly astounding how little information physicians are given about the effect of disability on reproductive capacity or the value women with disabilities ascribe to the ability to bear children. Few articles in the medical literature discuss the safety of oral contraceptives for women with various types of physical disabilities, alternative techniques for conducting pelvic exams, or the importance of breast cancer screening for women who have difficulty accessing mammography equipment. Our study was the first to ask a large sample of women with a variety of physical disabilities about their experiences with gynecologic health care. The national survey included numerous items about types of contraception used and problems encountered, reasons for having a hysterectomy, frequency of going for pelvic exams and mammograms, and reasons for not receiving cancer screening on a regular basis.
Birth Control. Little is known about the safety or convenience of various methods of contraception for women with disabilities. Thirty percent of women with disabilities in our study believed that they had been given inaccurate information about birth control by their physicians, in contrast to only 9 percent of the able-bodied comparison group. More than one-third of women with disabilities were using no method of birth control, compared with nearly one-fourth of women without disabilities. Although failure to use birth control could reflect lack of sexual activity or desire to get pregnant, it is possible that some women with disabilities are dissatisfied with the safety or convenience of the methods available to them. Use of oral contraceptives was uncommon in both groups, although it was more common among women without disabilities (16 percent) than women with disabilities (9 percent). Clinicians often believe that oral contraceptives are contraindicated for women with mobility impairments due to an increased risk of blood clots, but a paucity of literature specifically addresses this controversy. The relatively low rate of birth control pill use for able-bodied women may reflect the fact that nearly half of them were at least 40 years old; the age at which risk of thrombosis rises is 35 years. Condoms were used by partners of 11 percent of women with disabilities and 17 percent of able-bodied women, but other barrier methods were rarely used by women with disabilities, probably due to limitations in manual dexterity. The most popular methods of birth control for both groups were surgical; 16 percent of women in both groups had a tubal ligation and 7 percent and 8 percent of the partners of women with and without disabilities, respectively, had a vasectomy. Hysterectomy was a frequent option used by both groups, although more frequently among women with disabilities.
Hysterectomy. Members of the disability community are concerned that some women with disabilities, particularly early onset disabilities, are having medically unnecessary hysterectomies for the purpose of birth control. Some of the women interviewed in our qualitative study reported a physician recommending that they have a hysterectomy to make sure they would never get pregnant. Conversely, a woman with cerebral palsy reported pleading with her doctor to give her a hysterectomy because menstruation was so difficult for her to manage. Women with disabilities had a significantly higher rate of hysterectomy (22 percent versus 12 percent) than able-bodied women. This difference mainly reflects the large difference in rates between young women with and without disabilities, as there was no significant difference in hysterectomy rates between the two groups among women who were age 35 or older. Our findings indicate that women with disabilities are more likely to have a hysterectomy at a younger age than are women without disabilities. Women with disabilities were more likely than their able-bodied counterparts to have a hysterectomy for non-medically necessary reasons such as birth control, personal convenience, or at the request of a parent or guardian (22 percent versus 12 percent). Menstrual management is inadequately addressed in the rehabilitation setting.
Cancer Screening. Women with disabilities are no less susceptible than any other women to getting cervical cancer or breast cancer. Certain subpopulations of women, such as those with low income or low educational levels, Hispanics, Asians, are less likely than other women to have regular pelvic exams and mammograms to screen for cancer. We were concerned that access to pelvic exams and mammograms may also be limited for women with disabilities, leading to diagnosis of cancer at a later, less treatable stage.
There was a tendency for women with disabilities to be less likely to received pelvic exams within the recommended guidelines (once every two years) (67 percent) compared to women without disabilities (73 percent). It had been hypothesized that women with disabilities would be more likely never to have had a pelvic exam; however, the small percentage of women who indicated such was not significantly different between the groups. Women with more severe functional limitations were much less likely to have regular pelvic exams. Minority women with disabilities were less likely to have regular pelvic exams.
Among the women with disabilities who did not have regular pelvic exams, the most frequently selected reason was difficulty getting onto the exam table (37 percent), followed by being too busy (31 percent), and inability to find a doctor who suited them (29 percent).Other disability-specific reasons selected were don't need pelvic exams because of their disability, and can't find a doctor who is knowledgeable about their disability. Women with disabilities were significantly more likely than women without disabilities to select reasons of difficulty finding an accessible doctor's office or clinic, difficulty finding transportation, difficulty getting onto an exam table.
We found that women with disabilities who were at least 40 received mammograms at about the same rate as women without disabilities (55 percent versus 50 percent). Women who had higher education levels were more likely to have a mammogram. Women who perceived that they had more control over their lives were less likely to have a mammogram; some believed they would be able to detect breast cancer by self-exam alone. Women with disabilities who had not had a mammogram cited different reasons for not going than able-bodied women. Among women with disabilities who had not had a mammogram within the past two years, the most frequently given reason was inability to get into the required position (34 percent), followed by no doctor recommending the screening (25 percent), then the belief that their cancer risk was too low to warrant getting a mammogram (24 percent).
Women with severe disabilities have reported that physicians are unable to give them a complete pelvic exam or that mammograms are unable to screen all of their breast tissue for abnormal masses. Further research is needed using registries of women with disabilities who have had breast cancer to see if inadequate or no cancer screening is leading to diagnosis of cancer at a later, less treatable stage. There are also reports that treatment options for women with disabilities who get cancer are more limited.
The findings of this study lead us to believe that women with physical disabilities, particularly those with more severe functional impairments, are not receiving the same quality of gynecologic health care as their able-bodied counterparts. It is more difficult for them to receive information about methods of birth control that would be safe and effective options in light of special considerations related to their disability. They are more likely to have hysterectomies for reasons that are not related to medical necessity. Though they may have intended to have regular pelvic exams, they are discouraged by inaccessibility in physicians' offices. We have received reports from many physicians that they do not conduct a pelvic exam on a woman with a disability if having staff lift her onto the exam table is perceived as being too difficult or is not allowed under the facility's policies, or if spasticity, contractures, or pain create positioning problems. In contrast, women with disabilities were in some cases more likely to receive mammograms than women without disabilities. Even so, positioning difficulties caused some women to believe that they were not receiving a complete examination. To remedy these inequities, we recommend education and training for both women with disabilities and clinicians. There is a need for programs and materials to inform women about how disability can affect their reproductive health, and how they can work with health care providers to ensure that they are receiving the same quality of service as all women. There is also a critical need for information to be available at undergraduate and post-graduate levels to physicians, physician assistants, nurse practitioners, nurse midwives, and nurses in general, about the reproductive health care needs of women with disabilities. The Center for Research on Women with Disabilities has begun developing materials and training curricula for these purposes.
When I used to go to my doctor, my sister who spoke English went, my mother, who didn't speak English, went and myself. And when the doctor would ask a question, my sister would ask my mom, and then my mom would tell my sister, and then she would translate it to the doctor. So it's like I was just there for the physical thing, and -- and they had their little conversation. So this is how I saw the medical profession, as somebody that you really don't speak to directly.
36-year-old polio survivor with scoliosis
I had a discharge and I didn't know what it was from and I told my doctor and she told me to find an OB/GYN doctor. When I called the doctor's office they would say O.K. but when you said something about being in a wheelchair the nurse would say let me talk to the doctor and we will get back with you. I called about four doctors and none of them would see me because I was in a wheelchair. When they called back they said no. They preferred not to deal with patients in wheelchairs.
22-year-old woman with paraplegia
According to the literature, women and persons with disabilities consume a larger share of health care services than the general population. We wanted to know more about the experience of women with disabilities in accessing health care services. In the interviews that began this study, we found our participants very eager to talk about these experiences; indeed, many used the opportunity to vent some very long held frustrations and deep negative feelings. They complained bitterly about inaccessibility in health care settings, lack of knowledge among health care providers about their disability, and a perception that they were not getting the same quality of health care, particularly reproductive health care, as women in general. In the national survey, we focused our questions on the types of health care providers used within the past year, as well as the types of health care facilities used. We analyzed differences in utilization patterns between women with and without disabilities. We also asked some general questions about how well their physicians were able to deal with their disability as it might affect an ordinary health problem.
Women with physical disabilities who participated in this study were more likely to have used every major category of health care provider within the past 12 months than women without disabilities. Significantly more women with disabilities had seen general practitioners, rehabilitation specialists, obstetricians/gynecologists, and other specialists. Ninety-one percent of women with disabilities had seen specialists of some type within the past year. Women with disabilities who lived alone were five times more likely to see specialists during the past year. Women who worked full- or part-time were less likely to see specialists. There was a slight trend for women with lower levels of functional impairment and women who work to be less likely to see specialists. Age, household income, duration of disability, self-esteem, perceived control of life, urban or rural residence, or education level did not increase the odds of seeing specialists. It is interesting to note that 24 percent of women with disabilities and 20 percent of women without disabilities used alternative health care providers, such as curanderos, homeopathists, and acupuncturists.
Women with physical disabilities were also more likely to have used every major category of health care facility within the past 12 months than women without disabilities. Significantly more women with disabilities used public health clinics, rehabilitation hospitals, and emergency rooms. We were curious about the high rate of emergency room use, and tried to identify factors that were associated with it. Various disability and socioeconomic factors did not seem to be related; however, we found that women who perceived more control over their lives were less likely to use emergency rooms. Although more women with disabilities (54 percent) reported seeing private physicians than women without disabilities (45 percent), this difference was not significant.
Five items in the national survey asked specifically about the ability of health care providers and facilities to accommodate disability-related needs. These items were grounded in statements made by women with disabilities who participated in the qualitative interviews that preceded the national survey. Thirty-nine percent reported that their physicians do not speak directly to them if a family member or other person accompanies them. Thirty-one percent have had a physician refuse to see them because of their disability. Twenty-six percent believed their physicians were not well-informed about how their disability affects their reproductive health. Thirty-six percent had difficulty finding a physician who was willing or able to manage their pregnancy. More than half of women with spinal cord injury had this problem. Fifty-six percent reported that the hospital could not accommodate their disability-related needs when they gave birth.
Serious barriers exist that reduce the quality of health care available to women with physical disabilities. Architectural barriers in physicians' offices and hospitals still exist, despite the requirements of the Americans with Disabilities Act. There are invisible barriers as well, such as policies that deny service to women who cannot independently mount an examination table, and the refusal of physicians to see women solely on the basis of their disability, also in violation of the Americans with Disabilities Act. Advocacy is needed to inform persons in charge of medical facilities and clinical practices about their obligation to comply with legal requirements for physical and policy accessibility.
Our finding that women with disabilities make significantly greater use of services from specialists and emergency rooms has strong implications. With the advent of managed care, there are more stringent regulations on the use of specialists. For women whose health depends on timely access to physicians who have the specialized knowledge they need, these regulations could seriously affect their ability to maintain good health and prevent minor conditions from escalating into major ones that require more involved and more expensive treatment. Many of the complications of immobility and disability-related diagnoses are not taught in primary care training programs. A specialist may be the most appropriate primary care provider for some women with disabilities. This may also be an insight into the disproportionately high use of emergency rooms we found among women with disabilities. The many barriers to accessing health care, both within medical systems and in the community (such as lack of accessible transportation and attendant services) contribute to delayed treatment. When knowledgeable providers are not available or when systems barriers prevent them from delivering services in a timely manner, otherwise controllable health problems become ones that can only be handled in an emergency room. When we see the use of emergency room services declining, we will know that health care systems have made progress in removing some of these barriers to quality health care service.
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Sexuality, Reproductive Health
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Margaret A. Nosek, Ph.D., Principal Investigator
Diana H. Rintala, Ph.D., Co-principal Investigator
Mary Ellen Young, Ph.D.
Catherine C. Foley, Ph.D.
Gail F. Chanpong, M.S.
Don Rossi, M.S.
Jama Bennett, M.Ed.
Kathy Meroney, B.A.
Adjunct Research Team Members:
Mary Ann Board, MSW
Fae Garden, M,D.
Karen Hart, Ph.D.
Lila Laux, Ph.D.
This work was supported by a grant from The National Institutes of Health, National Center for Medical Rehabilitation Research, Grant HD30166-01.