Women’s health and disability


The health concerns of women with a disability are no different to those of all women. This includes the need for general information about nutrition, weight, mental health and health screening services (Welner & Temple 2004), as well as matters specifically pertinent to women’s health including reproduction, contraception, cervical and breast screening. At the same time physical access to services must be ensured. Once there, appropriate equipment needs to be available to enable examinations to be undertaken as comfortably as possible and with privacy and dignity. Additional time is commonly needed for history taking and to enable preparation for examination when mobility is limited. For women with sensory impairment this latter aspect will need additional thought, for example guidance to an examination couch may be needed, and the practitioner must be in a position to ensure that communication with women who are hard of hearing is possible during the examination. Furthermore, when health services are offered to women with a disability other medical issues and challenges with physical and cognitive ability may need to be taken into consideration.


The health needs of women with a disability related to specific ‘women’s’ issues are increasingly being acknowledged as not being adequately met, for example Jackson & Wadley (1999) report that women with spinal cord injury were less likely to have a routine mammogram. This discrimination goes against the ‘equal opportunities for all’ ethos and legislation of a civilised society (for example in the UK the Disability Discrimination Act 1995, in the USA the Americans with Disabilities Act 1990 and the Manifesto by Disabled Women in Europe (UK Disability Forum 1999)) that stipulates that all public services should be available to everyone, which of course includes health services.

Factors influencing women’s experiences of accessing health services were clearly demonstrated in two American studies (Becker et al 1997, Nosek et al 1995). These included the women’s previous encounters with medical care, their own knowledge about reproductive health, and inaccessibility to reproductive health services. This latter factor not only included physical access to facilities but related to service policies, and the attitudes of the professionals providing those services. Insensitive practitioners often appeared surprised that the women were sexually active. As a result of all of these factors, women tended to avoid gynaecological visits.

Women’s disability studies and discourse have done much to bring the inadequacy of women’s health services to the forefront of understanding. Lonsdale (1990) presented a feminist perspective on the experiences of women with disabilities related to issues of gender and sexuality. She identified the key points as those concerning the lack of information about sexual activity, contraception and childbirth. Murphy & Young’s (2005) review of American literature and research from the late 1990s and early 2000 found that young people with disabilities continued to be less likely to have received information about reproduction and contraception.

Morris (1995) had earlier identified these themes from her study of questionnaires from 205 women paralysed by spinal cord injuries. In her chapter on sexuality and child-bearing she highlighted the prejudice women experienced towards their sexuality, and the lack of research and advice on contraception. Additionally, the deficit of information on sexually transmitted infections (STIs) has been highlighted (for example Becker et al 1997, Kallianes & Rubenfeld 1997). Much of this may be associated with the opinion of professionals and society that people with a disability are asexual (Becker et al 1997, Kallianes & Rubenfeld 1997, Lonsdale 1990). But women and adolescents with a disability are just as likely to have sexual desires and needs as their non-disabled peers as Choquet et al’s French study (1997) and Sawin et al’s American study (2002) revealed.

However, historically the stigma of disability and the common misconception that disability is hereditary fuelled the belief in the past (and possibly still today) that women with a disability should not have children. Demonstration of society’s disapproval has come from the lived experiences of the women. Campion (1990) and Shackle (1994) reported the negative attitudes women had received had related to their sexuality and parenthood, often manifested as distaste and overt discussed towards them. This, it could be argued, had occurred because of society’s attraction to individuals they perceive as beautiful, and the belief that anyone ‘less than normal’ is unattractive.

At the same time as people with physical disability were perceived as asexual the potential sexuality of people with learning difficulties had been recognised and caused concern. Clarke & McCree (1986) and Whitman & Accardo (1990) pointed to the Eugenics Society in Britain and America during the late nineteenth and early twentieth centuries when it was believed that the nation’s intelligence would be diluted if people with learning difficulties were ‘allowed’ to reproduce. Institutionalisation and gender segregation became the accepted ‘remedy’ for this ‘problem’. Forced sterilisation (Whitman & Accardo 1990) and automatic termination of pregnancy (Gates 2001) have been other methods of denying women with disabilities the opportunity of motherhood. These actions may have resulted from family and professionals’ concerns about a woman’s ability to cope with pregnancy and a child, fears of producing a child with a disability, or an endeavour to protect the family and society from the burden of caring for a child.

In contrast, the feminist perspective of women with disability is the right to have children and not to have a pregnancy automatically terminated. However, this is a direct contradiction to traditional feminist thinking that women should have the right to abortion on demand (Kallianes & Rubenfeld 1997, Morris 1991). Indeed, Morris (1991) argued that ‘qualityof-life’ issues had not been addressed by these feminists and she contended that no one should make value judgements on another person’s life.



Disability activists advocate a social model of disability rather than a medical model although both models have been challenged with the more holistic model from the World Health Organisation (WHO): the International Classification of Functioning, Disability and Health (ICF). Tom Shakespeare (1996) expanded the social model of disability, by proposing that it should encompass sexuality and replace the predominant medical model that relates a lack of sexuality to physical incapacity. He also feels that society’s expectation of asexuality is linked to the perception of people with a disability as childlike because of their dependence on help. However, Blackburn (2003) postulates that asexuality may have been perpetuated by failure of researchers to publish study results that revealed the reality that refuted asexuality. She argues that this is either because they lacked solutions to identified issues or because of concerns about society’s response to their findings. Yet for some women, being viewed as asexual may be an advantage as the pressure to marry and have children as a ‘societal norm’ may be absent (Swain et al 2003).

Body image

Everyone is influenced by their life experiences, interactions with others and personal expectations. These help to build up an individual’s perception of self and ‘fit’ within society. The challenges of everyday life to fulfil personal expectations for someone with a physical or cognitive disability may need not only a positive attitude, but alternative solutions or different ways of thinking to overcome social, psychological and emotional barriers.

Body image has a powerful influence on an individual’s behaviour. People with a congenital disability who see the disability as part of who they are may or may not be happy with their body. A person with an acquired disability may have held strong negative attitudes towards people with a disability before becoming disabled. This may then lead to negative feelings about self and how others see them, including partner, family and friends. The resulting loss of self-esteem could affect their whole perception of self including body image and sexuality. Psychosexual consequences may result.

Psychosexual issues

Practically every chronic or debilitating condition has the potential to cause sexual dysfunction (Goodwin & Agronin 1997). Healthcare professionals do not often ask questions about sex during routine examinations; there is a stereotypical view that if you have a disability then you are not interested in sex and so the subject is not raised. However, this is not the case and sexual function is an important part of all our lives. Disability is a term encompassing a vast number of issues; people with disabilities are not a homogenous group any more than people without disabilities are and it is therefore difficult to say what sexual problems may be encountered.

One of the main aspects of physical disability/illness that are likely to cause problems is pain. The body shuts down thoughts of sexual desire if the person is feeling pain. Acute pain can also shut down the sexual response cycle and when an individual has pain that is chronic and debilitating, then desire and arousal shut down on a long-term basis (Goodwin & Agronin 1997). Normal sexual response is dependent on normal brain and peripheral nervous system function, intact genital nerve pathways and adequate supplies of sex hormones (Bancroft 1989). Depending on the type of disability, there may be a disturbance in the nerve pathways, endocrine function and blood supply to the reproductive tract which can have an adverse effect on sexual response. Add to these problems the negative effects of poor body image and low self-esteem, general lack of confidence and performance anxiety and it becomes obvious why some people with disabilities have psychosexual problems.

Muscle spasm may be another area of concern; if there is some spasticity of the lower limbs then full penetration may be difficult. The couple need to experiment with different positions and aim to be as relaxed as possible. There is a lot more to sexual pleasure than just penetration, and caressing, kissing and mutual masturbation can produce orgasm and sexual satisfaction without full intercourse. Catherine Kalamis (2003) in her self-help book ‘Women without sex’ describes a variety of exercises including fantasizing which can improve love-making techniques.

If the partner is aware of the pain and anxiety suffered by the disabled person, he may also develop sexual dysfunction and put up barriers to sexual activity. Another issue is that he may be the disabled person’s main carer; if he is attending to the personal hygiene and toileting needs, he may not find that person ‘sexy’ or desirable. Sian Vasey (1996), a wheelchair user dependent on a ‘care package’ to enable her to live independently, describes the problems faced when trying to form employment relationships (her carers) and sexual relationships. One of the issues she highlights is how difficult it is to have a sexual relationship when there is often a ‘third party’ present as well, attending to other personal needs. She also emphasises the problems of determining what friendship is, how much help can friends be expected to give (like helping her to the toilet) and where does this fit in with paid carers? She concludes that forming close and intimate relationships can prove difficult and quite daunting. Despite some of these negative aspects, however, many disabled women have perfectly adequate/satisfactory sex lives and good relationships with their partners (Taleporos & McCabe 2003).

Whilst there has been little research into sexuality and women with disabilities generally, one area that has been investigated is sexual response in women with spinal cord injuries. Tepper et al (2001) and Whipple & Komisaruk (1997), researchers at the Kessler Institute for Rehabilitation in West Orange New Jersey, conducted a survey into the sexual responses of women with spinal cord injuries. Over half the women in the trial were able to achieve orgasm regardless of the pattern or degree of neurological injury. Those women who achieved orgasm also had a higher sex drive and a greater sexual knowledge. However, some women in another study said that they shut down all thoughts of sexual activity as they felt that they could not achieve orgasm due to loss of sensation in the genital area (Kalamis 2003, p 50). Research now shows that sexual activity can be resumed and enjoyed despite grave injury, as the vagus nerve, thought to be responsible for transmitting sexual pleasure sensations, can be stimulated from other parts of the body and not just from the genitalia (Whipple & Komisaruk 1997).

Loss of desire is a symptom of depression and some people with chronic and debilitating pain can become depressed. Sometimes the anti-depressants used for treatment can have an adverse effect on sexual function; they can suppress sexual desire and make the situation worse rather than better. Good management of the physical condition, prevention of anaemia and other conditions which may cause fatigue can help improve sexual function and alleviate the feelings of depression (Kalamis 2003).

Women with disabilities are as much at risk of gynaecological problems as any other woman. If dyspareunia (painful intercourse) is a problem, the assumption should not be that it is part of the disability; a woman needs a full pelvic examination to exclude pelvic pathology such as endometriosis. If there is gynaecological pathology, then appropriate treatment should be given, but add to that general advice about positions for love-making, taking into account mobility issues. Sometimes just changing the position to female superior can help alleviate deep dyspareunia. If superficial dyspareunia is the problem, advice about foreplay to increase arousal and lubrication or the use of added lubricants to ease penetration may help improve sexual function.

Women must be their own advocates regarding sexual activity. If they have pain which is interfering with their engagement in love-making, then they need to seek help and obtain more adequate pain control (Goodwin & Agronin 1997). There should be more easily accessible information about sexual function as knowledge about the normal sexual response can help the couple develop a more satisfactory sexual relationship. Support groups may be able to offer advice regarding sexual activity for people with specific disabilities such as multiple sclerosis or spina bifida.

Sexual awareness is important and it is helpful for a woman to know her own limitations, strengths and weaknesses. Couples should focus on sexual activities within these boundaries and avoid unrealistic expectations, for example if it is not physically possible then it should not be tried. Women can build up their physical strength with exercises so that sexual activity becomes a possibility. Prior to sexual activity, women should make sure that they are well rested and could try relaxation exercises, setting the scene, e.g. using candles or aromatherapy, and plan for the event by introducing some romance. Different positions could be tried and there is no need to rush; sensuous stroking and caressing and time spent on finding out what pleases each other can be beneficial to the couple (Heiman & LoPiccolo 1992). Attitude is very important; women need to remember that they are a person first, and disabled or physically compromised second. With a little preparation and planning, sexual activity can be very rewarding and a lot of fun.


Women who have congenital disabilities may have been segregated during childhood and have had a lack of opportunity to form relationships. If the disability occurred during adolescence, which is a major time of physical and psychological upheaval, the individual may have found it hard enough to come to terms with the disability without having to worry about sexual identity and forming relationships. Young people may not have been given sex education or adequate information about where to seek help and advice as they are considered ‘asexual’. There is an emphasis on sexual behaviour being all about penetration and there is not enough emphasis on sexual pleasure being gained through touching, caressing and warm, loving and intimate relationships. Young people are often under pressure from their peers to have full penetrative sex, but it is up to the individual and they need advice, counselling and support to empower them to make their own decisions.

Teenagers often meet parental disapproval and financial constraints when trying to meet others and initiate relationships. For the teenager with a disability, challenges with mobility, personal acceptability and incontinence may need solutions. A lack of self-identity and independence may be compounded by isolation from peers and an inability to develop relationships (Blackburn 2002). This limited social experience and any medical conditions may delay the acquisition of sexual knowledge. But this is not only true for the teenage years. For all people with disabilities inhibited access to leisure and social events or exclusion from the workforce due to physical, psychological and social barriers lessens opportunities to meet others, make friends and develop close and intimate relationships (Shakespeare 1996). Nevertheless, Murphy & Young (2005) found that young people were just as likely to experience sexual activity at a similar age as their non-disabled peers although generally on fewer occasions.

Blackburn (2002) found that people with spina bifida had normal sexual needs and drive. Ann Neville-Jan (2004) gives a graphic account of the problems she faced when trying to have a loving and satisfying sexual relationship with her husband. Normal sex drive was present, but pain and depression, treated with anti-depressants, meant that there was loss of pleasure as anorgasmia developed. As her husband commented: ‘It seems to me like selling your soul to the devil, trading relief of pain for loss of pleasure’ (p 113). Changing medication can sometimes improve the outlook by giving adequate pain relief, whilst still retaining the ability to achieve orgasm.

These topics cover the whole spectrum from the basic facts of life to reproduction and parenthood, the right to choose when and if to have relationships, contraception and STIs. This then increases the opportunity for individuals to embark on safe and fulfilling relationships. Therefore, it is not a question of if these issues are addressed, but how appropriate information can be effectively offered to aid leaning. However, equity of opportunity for sex education may not always be available.

Blackburn (2002) compared a group of young American people with spina bifida and/or hydrocephalus (SB/HC) with a matched non-disabled (control) group. She found that 80% of the SB/HC group had received some sex education whilst at school compared to 94% of the control group. Few had received any education outside of school. Of greater concern was the fact that only 18% of the SC/HC group had received any specific education about sex and disability. When asked, their main concerns related to sexuality were urinary and faecal incontinence.

Blackburn (2002) discovered that the participants in her study preferred educational media in video format and simple leaflets or magazines which enabled repeated review of the information. Whatever format is utilised it should readily aid and reinforce learning. Making use of appropriate and realistic models, audible and visual/tactile aids with active rather than passive learning will enhance the quality of the learning experience. This may be facilitated either individually or in a group setting depending on the individual’s comfort, inhibitions, and levels of perceived embarrassment, as with all people.


The key factors for successful contraception for any woman or couple are availability, acceptability and suitability (see Table 2.1 for a summary). But barriers to obtaining contraception may exist for women with a disability because of the attitudes or a lack of knowledge of their helpers or health providers (Welner 1997). These involve inappropriate or negative viewpoints towards their desire or need for contraception and a lack of knowledge about women’s potential needs and methods suitable to meet their specific requirements (see Table 2.1). Nevertheless, women with a disability are entitled to access family planning and contraception services which form, as Drey & Darney state ‘…..part of providers’ responsibility to acknowledge the full lives and health needs of people who are disabled’ (2004, p 122). However, professionals do not always ask about contraception use; this is perhaps linked to their surprise that women are indeed often sexually active (Becker et al 1997).

Table 2.1 Contraceptive method availability, suitability and acceptability for women with disability
aFailure rate indicates the number of women out of 100 using the method correctly for 1 year who become pregnant.
bSTIs = sexually transmitted infections.
cSafety time—the number of hours after the time the normal daily tablet should have been taken in which the woman can still consider herself safe from pregnancy.
dDVT = Deep vein thrombosis i.e. a blood clot in the deep veins, commonly the calf, that may dislodge and travel to the heart, lungs or brain with the potential to cause collapse & death.
eMS = Multiple sclerosis.
fPID = Pelvic inflammatory disease—less common with IUCD or Mirena since screening/treatment for chlamydia prior to insertion.
Method Availability Failure ratea Ease of use Advantages Disadvantages/possible risks
Male condom Free at family planning clinics Readily available for purchase in varied retail outlets 2%

Application prior to intercourse or any genital contact Requires dexterity for application & removal by the male or his partner

Ease of acquisition

Can always have available

Some protection against STIsb& human papilloma virus that causes cervical cancer
No medical implications except latex allergy— polyurethane available
Requires considerable dexterity for correct insertion by woman or partner

May inhibit spontaneity in love-making Incorrect application/removal may lead to method failure e.g. from condom damage or semen spillage Polyurethane splits more easily

Damaged by oil-based creams e.g. petroleum jelly & Gyno-Daktarin
Female condom Purchased at pharmacies 5%

Insertion prior to intercourse or any genital contact

Leg abduction needed

No medical implications except latex allergy

Can always have available

Some protection against STIsb& human papilloma virus that causes cervical cancer

May inhibit spontaneity in love-making

The need to touch genitalia may be unacceptable

Poor perineal sensation e.g. due to spinal cord injury, inability to abduct legs, tremor or poor fine movement may inhibit correct insertion/removal

Rustles during use which may be ‘off putting’ Method failure due to penile penetration outside of the condom, or incorrect positioning or removal
Combined oral contraceptive pill (COC) (oestrogen & progesterone) Prescribed at family planning clinics or by GP Free of charge Less than 1%

Small & easily swallowed 12-hour safety timec

Cognitive ability & no chaotic lifestyle to ensure regular/timely use

Possibly some joint improvement in rheumatoid arthritis

No inhibition of spontaneity in love-making

Menstruation very regular

Blood loss light— less hygiene issues & anaemia

3 packs can be taken consecutively to avoid withdrawal bleeding

Reduced reliability with some medication e.g. carbamazepine (Tegretol) used in MS & epilepsy, St John’s Wort Increases effects of beta blockers, diazepam & corticosteroids

DVTd risk if circulation poor or higher coagulation potential due to immobility

Reliability diminishes with a bout of diarrhoea, or broad-spectrum antibiotics e.g. ampicillin (use additional method for at least 7 days after the episode/treatment)

Risk of pregnancy with delayed or missed pill Less suitable for women over 35, those obese & smokers

Unsuitable if breastfeeding
Progesterone only pill (POP) (‘Mini pill’) Prescribed at family planning clinics or by GP Free of charge 1%

Small and easily swallowed 3-hour safety timec (New Cerazette has a 12-hour safety time)

Cognitive ability & no chaotic life-style essential to ensure regular/timely use

No inhibition of spontaneity in love-making

Very reliable if taken promptly every day Suitable in many cases when COC not e.g. with certain conditions, for over 35s, when DVTd risk & when breast-feeding

Menstrual flow may lessen/cease—less hygiene issues & anaemia

Reliability may be reduced by some medication (see COC above) & body weight over 70 kg

Short safety time—high risk of pregnancy with delayed or missed pill

Some side effects such as headache & fluid retention may be unacceptable

Irregular menstruation possible

Long-term use unclear about affects on bone density
Depo Provera (long-acting progesterone injection in an oily preparation)

Prescribed & injected at family planning clinics or by GP

Free of charge
Less than 1%

One intramuscular injection regularly every 11–12 weeks into buttock/large muscle as more painful in smaller muscle

Cognitive ability or guidance from helper to ensure effective uptake

No inhibition of spontaneity in love-making

Suitable in many cases when COC not (see POP above)

Menstruation may cease after initial irregularity/heavy loss—less hygiene issues & anaemia

Reliability may be reduced by some medication (see COC above)

Injections may be unacceptable or large muscle not available/accessible

Side effects as with POP—weight gain—may affect mobility

Irregular menstruation possible Return of fertility may be delayed after discontinuation
Skin implants (slow-release progesterone) e.g. Implanon

Prescribed & inserted/removed at family planning clinics (some GPs) under local anaesthetic

Free of charge
Less than 1%

Single ‘rod’ inserted under skin of the underside of upper arm

Changed every 3 years (see Fig. 2.2)

No inhibition of spontaneity in love-making Infrequent attendance at clinics needed

Small but constant daily dose released = less side effects

Fertility may return more readily after removal than with Depo Provera Suitable when COC not (see POP above) Menstruation benefits (see Depo Provera above)

Reliability may be reduced by some medication (see COC above) Insertion procedure may be unacceptable

Removal may be difficult

Skin may initially be uncomfortable

Side effects as with POP above Long-term use possible loss of bone density
Combined patch (Evra) progesterone & oestrogen Some family planning clinics & GPs 1%

5 cm × 5 cm skin patch

3 patches in total—1 patch lasts 7 days then changed

These 21 days followed by 7 days patch-free

Withdrawal bleed in this time

Repeat cycle (see Fig. 2.1)

Lower overall dose than COC

Steady blood levels of hormones

Useful in a chaotic life-style/difficulty remembering a daily pill/reminder from a helper

Reliable when broad spectrum antibiotics taken

3 cycles can be used without a break to avoid withdrawal bleeds

See COC above Reliability reduced if weight over 90 kg

Skin sensitivity in some women

Spotting during first 1–3 cycles
Emergency contraception (high dose of progesterone) (see intrauterine system & IUCD below for alternative method) Free at family planning & STIb clinics Prescribed by GP (free) Purchased from some prescribing pharmacists at approximately £26 5% within 24 hours 15% 25–48 hours 42% 49–72 hours 1 pill taken within 72 hours of unprotected intercourse or failed method e.g. condom split

Prevention of fertilization & implantation

Can have a supply in as back-up for failure of method— more effective with minimal time delay
See POP above
Intrauterine system e.g.
Mirena (a coil with progesterone) (see Fig. 2.3)
Prescribed & inserted/removed at family planning clinics (few GPs) with local anaesthetic often to cervix
Free of charge
Minimal Chlamydia screening prior to insertion

Replaced every 5 years

Leg abduction needed for insertion
No inhibition of spontaneity in love-making Infrequent attendance at clinics needed

2 contraceptives in one raises reliability

Small but constant daily progesterone released—less side effects Fertility may return more readily after removal than with Depo Provera Suitable in many cases when COC not (see POP above) Menstruation benefits (see Depo Provera above) Used as emergency contraception within 5 days of unprotected intercourse/failed method
Progesterone efficiency may be reduced by some medication (see COC above) Insertion may be unacceptable to woman Leg abduction needed for fitting—may be difficult with arthritis/leg spasms with MSe or cerebral palsy Less easy/more painful to fit if woman not had a child
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