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Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being.



Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being. Edited by Danuta M. Krotoski, Margaret A. Nosek, and Margaret A. Turk. Baltimore; Paul H. Brookes Publishing Co., 1996, 482 pages. Paper, $42.95.

In recent years, academicians, clinicians, and educators have increasingly studied and discussed the factors affecting the sexual self-perceptions and sexual expression of person's with physical disabilities. However, in general, less attention has been focused upon the sexual lives of women with disabilities. Because historically female sexuality has been explored less often than has male sexuality, and because disability status has often carried the stigma of asexuality a·sex·u·al  
adj.
1. Having no evident sex or sex organs; sexless.

2. Relating to, produced by, or involving reproduction that occurs without the union of male and female gametes, as in binary fission or budding.

3.
, little is known about the sexual expression of women with disabilities. An impressive and comprehensive book on women with physical disabilities edited by Krotoski, Nosek, and Turk (1996), however, includes a section devoted to sexuality and reproductive health Within the framework of WHO's definition of health[1] as a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity, reproductive health, or sexual health/hygiene . Although this portion constitutes only one fifth of the book, a variety of authors throughout the book cover issues pertaining per·tain  
intr.v. per·tained, per·tain·ing, per·tains
1. To have reference; relate: evidence that pertains to the accident.

2.
 to sexuality. In view of the primary focus of past empirical and theoretical work upon the sexual functioning among persons with disabilities, this section is unique in that it contains information not only about sexual health functioning but also about the psychosocial psychosocial /psy·cho·so·cial/ (si?ko-so´shul) pertaining to or involving both psychic and social aspects.

psy·cho·so·cial
adj.
Involving aspects of both social and psychological behavior.
, sociocultural so·ci·o·cul·tur·al  
adj.
Of or involving both social and cultural factors.



soci·o·cul
, historical, and political influences on the sexual self-definition and sexual expression of individuals within the disabled community. This shift from a more narrow view of sexuality and disability to a broader understanding is evident throughout the book. The authors and editors clearly show great understanding of the bio-psycho-social influences on the sexual lives of women with physical disabilities.

Often times, after one has experienced a spinal cord injury Spinal Cord Injury Definition

Spinal cord injury is damage to the spinal cord that causes loss of sensation and motor control.
Description

Approximately 10,000 new spinal cord injuries (SCIs) occur each year in the United States.
 (SCI (Scalable Coherent Interface) An IEEE standard for a high-speed bus that uses wire or fiber-optic cable. It can transfer data up to 1GBytes/sec.

(hardware) SCI - 1. Scalable Coherent Interface.

2. UART.
), the physical ability to engage in sexual activity and to experience pleasure is questioned. Beverly Whipple and colleagues discuss the physiological response of women with complete SCI. The study presented consists of both quantitative and qualitative explorations of sexual expression. The quantitative portion examined the effect of self-stimulation by women with complete SCI on activating sexual response, suppressing neurogenic neurogenic /neu·ro·gen·ic/ (-jen´ik)
1. forming nervous tissue.

2. originating in the nervous system or from a lesion in the nervous system.
 or experimental pain, and suppressing spasticity spasticity /spas·tic·i·ty/ (spas-tis´i-te) the state of being spastic; see spastic (2).

spas·tic·i·ty
n.
1. A spastic state or condition.

2. Spastic paralysis.
. Preliminary results point toward participants reporting a significant increase in pain-detection threshold, recognition of perceived cervical and vaginal pressure, and a significant increase in arousal under each stimulus condition (i.e., vaginal, cervical, or hypersensitive hy·per·sen·si·tive
adj.
Responding excessively to the stimulus of a foreign agent, such as an allergen; abnormally sensitive.



hy
 self-stimulation). The qualitative part of this study consisted of interviews with eight women with complete SCI. Data were clustered in phases (i.e., preinjury, immediately postinjury, and from the rehabilitation rehabilitation: see physical therapy.  process onward) according to according to
prep.
1. As stated or indicated by; on the authority of: according to historians.

2. In keeping with: according to instructions.

3.
 sexuality and relationship experiences. Results indicated a sexual trajectory that included, in sequence, the subjective experiences of (1) cognitive dissociation dissociation, in chemistry, separation of a substance into atoms or ions. Thermal dissociation occurs at high temperatures. For example, hydrogen molecules (H2 , (2) sexual disenfranchisement dis·en·fran·chise  
tr.v. dis·en·fran·chised, dis·en·fran·chis·ing, dis·en·fran·chis·es
To disfranchise.



dis
, and (3) sexual rediscovery Noun 1. rediscovery - the act of discovering again
discovery, find, uncovering - the act of discovering something

rediscovery nredescubrimiento 
. This line of research is among the first to assess directly the physical and psychological components of the sexual lives of women with SCI, and draws much-needed attention to this area.

Also concerned with issues pertaining to sexual health, Sandra Welner explores gynecological gynecological /gy·ne·co·log·i·cal/ (-kah-loj´i-k'l) gynecologic.  concerns of women with disabilities. She covers topics such as contraceptive choices, diagnoses of sexually transmitted diseases Sexually transmitted diseases

Infections that are acquired and transmitted by sexual contact. Although virtually any infection may be transmitted during intimate contact, the term sexually transmitted disease is restricted to conditions that are largely
 (STDs), and menopause in terms of both objective information and subjective experiences that may arise for disabled women and health care professionals. A common assumption often made when discussing disability is that all disabled people have mobility impairments. Welner makes a critical distinction between the gynecological issues that face two groups of disabled women: women with mobility impairments and women with chronic illnesses (e.g., diabetes). Making this distinction within this chapter is particularly relevant given the importance of recognizing potential harmful effects of using oral contraceptives Oral Contraceptives Definition

Oral contraceptives are medicines taken by mouth to help prevent pregnancy. They are also known as the Pill, OCs, or birth control pills.
 with certain medically based populations. Another important topic Welner covers is the possible alteration of STD (Subscriber Trunk Dialing) Long distance dialing outside of the U.S. that does not require operator intervention. STD prefix codes are required and billing is based on call units, which are a fixed amount of money in the currency of that country.  symptoms (i.e., the difficulties in recognizing the covert symptoms of STDs among those who have loss of sensation or an inability to self-examine). She also addresses menopausal issues and points to the lack of information about potential problems that may be associated with decreased weight-bearing and infrequent aerobic activity among women with mobility impairments.

Given that the subject of sexuality and disability has received little attention, it is no surprise that pregnancy and childbirth among women with disabilities have also been understudied. Two essays in this book, however, attempt to address these issues. First, Amie Jackson discusses a study in which she examined preinjury and postinjury pregnancy and delivery among 472 women with SCI. Specifically, certain pregnancy complications, including urinary tract infections urinary tract infection (UTI),
n infection in one or more of the structures that make up the urinary system. Occurs more often in women and is most commonly caused by bacteria.
, disability-related difficulties (e.g., development of pressure sores pressure sore
n.
See bedsore.
), labor symptoms (e.g., abnormal Pains and increased spasticity), and issues surrounding the method of delivery (i.e., increased incidence of cesarean sections cesarean section (sĭzâr`ēən), delivery of an infant by surgical removal from the uterus through an abdominal incision. The operation is of ancient origin: indeed, the name derives from the legend that Julius Caesar was born in this  in post injury pregnancies, higher frequency of vacuum or forceps delivery forceps delivery
n.
The birth of a child assisted by extraction with a forceps designed to grasp the head.
, and fewer spontaneous vaginal deliveries A spontaneous vaginal delivery (SVD) occurs when a pregnant woman goes into labor without use of drugs or techniques to induce labor, and delivers her baby in the normal manner, without a cesarean section. ), were found to be more common among women with disabilities. Jackson concludes with a discussion of postpartum postpartum /post·par·tum/ (post-pahr´tum) occurring after childbirth, with reference to the mother.

post·par·tum
adj.
Of or occurring in the period shortly after childbirth.
 issues and breast-feeding breast-feeding /breast-feed·ing/ (brest´fed?ing) nursing; the feeding of an infant at the mother's breast.  habits among women with SCI.

Similarly, Judith Rogers examines the topic within a more qualitative, experiential context. This author interviewed 14 women with various types of physical disabilities and identified three fundamental problem areas with pregnancy: (1) difficulties with physicians' attitudes, (2) quality of communication between physicians or other health care providers and patients, and (3) lack of information about the effect of disability on pregnancy. Rogers concludes with clear recommendations for future research aimed at common obstacles faced by pregnant women with disabilities.

The second half of the section on sexual and reproductive health focuses on the psychological, social, and familial influences of the sexual self and sexual activity of women with disabilities. Harilyn Roussou discusses the effect of disability on perceptions of the sexual self and the factors that contribute to self-definition among young disabled women. Roussou has written about the sexual self-development of adolescent women with disabilities for over 20 years and eloquently presents this material. She also discusses her personal experience of living with a disability. This self-disclosure is presented in an appropriate fashion and paints a realistic picture of issues faced by young women growing up with a disability. Roussou discusses her own project that involved interviewing women who had acquired disabilities before and after adolescence. Results indicated that women with preadolescent pre·ad·o·les·cence  
n.
The period of childhood just before the onset of puberty, often designated as between the ages of 10 and 12 in girls and 11 and 13 in boys.



pre
 disabilities had their first date, kiss, sexual contact, experience with intercourse, and steady relationship later than those with postadolescence disabilities. The two groups showed no differences in the age at which they began to masturbate mas·tur·bate
v.
To perform an act of masturbation.
, suggesting similar levels of sexual desire among both groups. Roussou also discusses parental expectations and their effect on the development of a positive sense of self among young disabled women.

Similarly, Carol Gill explores dating and relationships among women with disabilities. Gill, widely known for her work in the areas of disability identity, community, and culture, clearly presents theories accounting for romantic disadvantages among women with disabilities. These arguments center around the importance of aesthetics and "normal" functioning as desirable characteristics in attracting sexual and romantic partners. Thus, given that women with disabilities typically do not meet these societal norms, it is more difficult for this population to develop and to maintain sexual and romantic relationships. Gill also notes, based upon her clinical experiences, that women with disabilities who have experienced unsuccessful relationships with partners deemed acceptable by societal standards are often drawn to future partners of minority cultures (e.g., other disabled people, individuals belonging to minority races or ethnicities): The shared minority experience may enhance physical and emotional intimacy Emotional intimacy is a dimension of interpersonal intimacy that varies in degree and over time, much like physical intimacy. Affect, emotion and feeling may refer to different phenomena. Emotional intimacy may refer to any or all of those in both a lay or a professional context. . Furthermore, Gill discusses the likelihood of physical and emotional abuse of women with disabilities, which inevitably takes power from this community. Similar to Roussou, Gill discusses these issues by citing relevant literature as well as by sharing personal experiences. This piece is comprehensive in its attempts to answer some of the long-standing questions about the sources of difficulties for women with disabilities establishing romantic and sexual relationships.

Megan Kirshbaum explores the assumptions about the capabilities of mothers with disabilities to parent, as well as the influence of a mother's disability on her children. Kirshbaum has conducted a variety of studies on parents with disabilities and indicates that physical and emotional abuse serve as key variables that interfere with a disabled mother's ability to fulfill her role. She discusses the need to design research methodologies appropriate for this population and asserts the importance of observational studies observational studies,
n.pl an investigational method involving description of the associations be-tween interventions and outcomes. Outcomes research and practice audits are examples of this investigational method.
 and research on service and equipment needs of mothers with disabilities.

Corbett O'Toole focuses on psychosocial issues affecting the sexuality of lesbians with disabilities. She argues that, given their double minority status, disabled lesbians are culturally invisible to society in general and to those with disabilities. She notes that difficulties arise for this population because of perceived family-related shame that may stem from both disability status and a lesbian sexual orientation sexual orientation
n.
The direction of one's sexual interest toward members of the same, opposite, or both sexes, especially a direction seen to be dictated by physiologic rather than sociologic forces.
. O'Toole further notes that the stereotype of asexuality carried by the disability community affects lesbians in a different manner in that they tend not to receive appropriate sexual health and reproductive care. Ideas for generating better health care for lesbians with disabilities are described, and the importance of including disabled lesbians within discussions of disabled women's issues and agendas for health care for this community are stressed. This chapter is unique in that it addresses an issue still relatively unexplored by disability-focused researchers. It provides empirical findings and theoretical explanations that help the reader to understand better the psychosocial influences on the lives of disabled lesbians.

Although many of this book's authors acknowledge the topic of emotional and physical abuse, Margaret Nosek specifically addresses abuse among women with disabilities. She presents a comprehensive literature review on the sexual abuse of girls and women with disabilities. Subsequently, she provides a description of her qualitative study of 31 women with disabilities in addition to summaries of the sexual abuse experiences reported by 11 of the participants. Furthermore, she discusses issues surrounding the ways in which disability status affects a woman's vulnerability for abuse, and provides recommendations regarding how to identify and prevent abuse. This piece presents a comprehensive look at past research in this area and relays the realistic accounts of abuse these women reported.

Marsha Saxton discusses useful strategies to teach health care providers to become allies of women with disabilities. Saxton explains that health care providers have often ignored important health-related issues for women with disabilities or have not known how to work with this population. Saxton describes methods to raise the health care professionals' awareness of disability issues (e.g., devising curriculum on disability issues to educate individuals in medical school). She also explores the subjective experiences of women with disabilities who have been marginalized by health care systems.

The concluding commentary on sexual and reproductive health is written by Barbara Waxman. Waxman, a nationally recognized theorist and advocate of disabled women's reproductive health rights, describes four facts that underlie the historical scientific indifference to the reproductive health needs of women with disabilities: (1) disability research has been gender-nonspecific; (2) sexuality and reproductive research has, for the most part, focused on men with SCI; (3) research has focused on disability as a defect and has paid little attention to the individual as a whole; and (4) there is a eugenic eu·gen·ic
adj.
1. Of or relating to eugenics.

2. Relating or adapted to the production of good or improved offspring.
 basis underlying efforts to control the fertility of women with disabilities. Waxman explores these themes within the context of the chapters in this section and provides an enlightening en·light·en  
tr.v. en·light·ened, en·light·en·ing, en·light·ens
1. To give spiritual or intellectual insight to:
 perspective on the sexual and reproductive health of women with disabilities.

Overall, the section of Women With Physical Disabilities: Achieving and Maintaining Health and Well-Being that focuses on sexual and reproductive health is fascinating in that it is the first attempt to present and discuss thoroughly the factors influencing the sexual lives of disabled women. This entire book presents the results of a conference entitled The Health of Women with Physical Disabilities: Setting a Research Agenda for the 90's, held in 1994 and organized by the advisory board of the National Center for Medical Rehabilitation Research and researchers and clinicians with and without disabilities. This book was designed for women with disabilities, health care providers, researchers, and family and friends of disabled women. The authors and editors have done an admirable job of making this book appropriate and useful for all of these audiences.

Stanley H. Ducharme and Kathleen M. Gill's Sexuality After Spinal Cord Injury: Answers to Your Questions is another example of a recent book that focuses specifically on sexuality and disability issues. Unlike Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being, however, this book is devoted exclusively to answering questions about sexual activity and sexual self-perception of persons with SCI. The two books serve as excellent companion resources, with Ducharme and Gill taking a more layperson's, practical approach to a specific topic covered only briefly in Women with Physical Disabilities: Achieving and Maintaining Health and Well-Being.

Although the sexual functioning of persons with SCI has been investigated over the past 20 years in academic literature, there has been little material available for individuals in the community. This book is a comprehensive, easy-to-understand sexuality handbook for persons with SCI. Most of the book is organized in terms of brief, focused questions followed by concise, informative answers. The questions focus on the most commonly asked questions garnered from the authors' conversations with persons with SCI. Even though this book is aimed at persons in the SCI community, it contains helpful information for professionals working with people with SCI and their families.

In the introduction, Ducharme and Gill discuss information about the anatomy of SCI and physically related consequences of injury (i.e., motor involvement, sensory involvement, bladder and bowel involvement, other related medical conditions See carpal tunnel syndrome, computer vision syndrome, dry eyes and deep vein thrombosis. , male and female sexual health, and Masters and Johnson Masters and Johnson, pioneering research team in the field of human sexuality, consisting of the gynecologist

William Howell Masters, 1915–2001, b. Cleveland, and the psychologist

Virginia Eshelman Johnson, 1925–, b.
 phases of sexual arousal sexual arousal Horny/horniness, randy/randiness Physiology A state of sexual 'yellow alert' which has a mental component–↑ cortical responsiveness to sensory stimulation, and physical component–↑ penile sensitivity, neural response to stimuli, ). Relevant drawings and diagrams accompany these sections and help to facilitate a better understanding of the material presented. This section provides a solid foundation for understanding subsequent material.

Rehabilitation and community integration is the theme of Chapter 1. This section appears to be oriented toward individuals who are newly injured. For example, most of the questions are related to general postinjury and rehabilitation concerns such as (1) Do all people get depressed after SCI?; (2) As time passes, will my sexual functioning get back to where it was before I got hurt?; (3) Is it okay to be sexual in the rehabilitation center?; and (4) Whom do I ask questions about sex? The answers to these questions are short, but are educational and provide suitable recommendations.

Emotional and social concerns are the focus of Chapter 2. The main themes that appear in this section include concerns about self-esteem, sexual expression, dating, relationships, and marriage. A sample of the questions covered include (1) 1 don't like my body. How will other people react?; (2) How do I meet potential partners?; and (3) I have not engaged in sex for years. Can I be sexually active now? Again, this section presents helpful information and answers to many personal issues. Although responses acknowledge a level of commonality com·mon·al·i·ty  
n. pl. com·mon·al·i·ties
1.
a. The possession, along with another or others, of a certain attribute or set of attributes: a political movement's commonality of purpose.
 to experiencing particular emotions, little attention is paid to the societal and media-related messages regarding sexuality and disability. For example, one question posed is "How could anyone ever be interested in me?" The response adequately acknowledges the validity of this type of question, but then states that there is really no reason to believe that a person with an SCI is unattractive or has nothing to offer. Yet, based upon society's normative standards of beauty and sexual attractiveness equating with physical perfection, it is not surprising that people with disabilities may feel unattractive. Even though recognition of an individual's experience is essential, acknowledgment of external factors that influence self-perceptions of disabled people is equally important. Therefore, health care professionals using this book as part of treatment with clients or patients may need to include supplementary materials about the psychosocial influences on the sexual self-perception of people with SCI.

Chapter 3 explores the physical aspects of sexual activity, including the effects of nicotine, alcohol, and drugs on sexual functioning. This chapter also includes detailed information about the influence of SCI on sexual arousal, erectile and orgasmic capacity, masturbation masturbation

Erotic stimulation of one's own genital organs, usually to achieve orgasm. Masturbatory behavior is common in infants and adolescents, and is indulged in by many adults as well. Studies indicate that over 90% of U.S. males and 60–80% of U.S.
, sexual positions, and bowel and bladder accidents within the context of sexual activity. Furthermore, this section presents suggestions concerning how to improve one's ability to experience his or her sexual self. Sample questions presented within this section include (1) Does cigarette smoking affect erections?; (2) How can I use a vacuum device when I have limited use of my hands?; (3) Can I masturbate after injury?; and (4) How do I explain my bladder and bowel to a new partner? This chapter is particularly helpful in that it provides answers to questions that are the least often discussed. Readers are able to take away useful information and subsequently seek to discover new ways of relating to relating to relate prepconcernant

relating to relate prepbezüglich +gen, mit Bezug auf +acc 
 themselves and partners on a sexual level.

Contraception, fertility, feminine hygiene Feminine hygiene is a general term used to describe products used by women during menstruation, vaginal discharge, and other bodily functions related to the vulva. Sanitary Towels (also known as maxi-pads or napkins), pantiliners, tampons, and feminine wipes are the major , and parenting for both men and women are discussed in Chapter 4. Examples of the questions in this chapter include (1) What are the chances of getting a woman pregnant?; (2) Can menstrual menstrual /men·stru·al/ (men´stroo-al) pertaining to the menses or to menstruation.

men·stru·al or men·stru·ous
adj.
Of or relating to menstruation.
 pads cause skin break down?; (3) Do I still need a pelvic exam Pelvic Exam Definition

A pelvic examination is a routine procedure used to assess the well being of the female patients' lower genito-urinary tract.
 each year?; and (4) Can my kids adjust to me being in a wheelchair? As mentioned previously, there has been a tendency to ignore the sexual health care of women with disabilities and parenting concerns of people with disabilities. This chapter directly addresses some of the common issues that arise in these two areas, and offers forthright responses.

STDs and future research are the focus of Chapter 5. A large portion of this chapter presents information about human immunodeficiency virus human immunodeficiency virus
n.
HIV.


Human immunodeficiency virus (HIV)
A transmissible retrovirus that causes AIDS in humans.
 (HIV HIV (Human Immunodeficiency Virus), either of two closely related retroviruses that invade T-helper lymphocytes and are responsible for AIDS. There are two types of HIV: HIV-1 and HIV-2. HIV-1 is responsible for the vast majority of AIDS in the United States. ) and acquired immunodeficiency syndrome acquired immunodeficiency syndrome, see AIDS.  (AIDS). Sample questions include (1) Can I still get AIDS and other STDs?; (2) Sometimes I want a relationship so much I don't worry about AIDS. Is that so unusual?; (3) Is research being done on the sexuality of women with SCI?; and (4) Is there any new research on men and sexuality? Given that HIV and AIDS have been addressed extensively over the past 15 years, but with little attention given to factors of specific importance to individuals with disabilities, it is appropriate that these topics are covered in this book. This chapter is comprehensive, easy to understand, and answers questions that are imperative to one's sexual health.

Four appendices provide useful information for all individuals with disabilities and for individuals working with this population. Included in the appendices are a detailed glossary of the terms used within the text; a list of resources including organizations that focus upon SCI, rehabilitation issues, or sexuality; a list of the independent living centers in the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area.  and Canada; and information about the statewide independent living councils. This compilation of information is invaluable because it is often difficult for people to obtain information about these organizations once they are no longer in a rehabilitation facility.

These two books address a severely neglected area of study in the sexological literature. They clearly acknowledge the importance of addressing the sexual rights and sexual health care needs of persons with disabilities and create a solid framework for understanding the sexual lives of the members of this community. In addition, they offer specific ideas, strategies, and intervention tools with regard to working with this population. Now that the groundwork has been laid for future exploration in this area, I hope that materials such as these will continue to appear for both professionals and individuals with disabilities.
COPYRIGHT 1998 Society for the Scientific Study of Sexuality, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1998, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Author:Mona, Linda R.
Publication:The Journal of Sex Research
Article Type:Book Review
Date:May 1, 1998
Words:3202
Previous Article:How I Got Into Sex.
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