WHAT is IMPORTANT ABOUT MENSTRUATION?

When I first began researching how women with learning disabilities experience menstruation, it was suggested that I was taking an unwarranted interest in matters that should remain private. However, the small body of work on menstruation that includes women's own perspectives shows how important menstruation is, with profound private impacts and consequences that should be of public concern. Ditchfield and Burns' paper situates the issues in the context of women's more general mental and physical health and well-being. Menstrual symptoms can affect women's well-being very directly. Barnard et a/'s (2003) work in the United States found that women who report one or more menstrual symptom had significantly lower scores for all but one domain of a health status measurement (the SF-36). These associations remained after controlling for coexisting illness and for sociodemographic and psychosocial factors.

SHOULD MENSTRUATION BE SUPPRESSED?

Clearly, many women with learning disabilities have unhappy experiences in relation to menstruation. Does this mean that the menstrual suppression and elimination emphasised in much of the (especially older) literature might be welcomed by the women concerned? Since the introduction of oral contraception that aims to reduce the number of menstrual cycles each year, there has been more interest in the subject of menstrual suppression for women in the general population. Studies have found variation in women's attitudes and beliefs about menstrual suppression. Wiegratz et al (2004) found that between 37% and 46% of German women in their survey wished to suppress menstruation by taking the contraceptive pill without a break. The reasons they gave were to reduce severe menstrual problems, to maintain better hygiene, to increase their quality of life and to reduce blood loss. Women who preferred to have regular withdrawal bleeding gave their reasons as fear of pregnancy, infertility, adverse side effects and a belief that menstruation was 'natural'.

Barnard and colleagues (2003) undertook a study to describe how American women feel about monthly menstruation and about menstrual suppression. They found that negative feelings about menstruation did lead to an interest in menstrual suppression. However, other women were not interested in changing their menstrual pattern and felt anxious about the idea of not having a menstrual flow, feeling it would 'not be normal'. They conclude that women need to be educated about the pros and cons of menstrual suppression to make a decision about whether it is right for them. Women with learning disabilities equally need to make an informed decision about whether menstruation should be suppressed. Health service providers have to be aware of the particular needs of women with learning disabilities in relation to the communication of such information. Accessible information about the interventions available can be helpful (for example the leaflet on Depo Provera produced by the organisation CHANGE, see below).

The presentation of such information should be geared to the needs and preferences of the individual woman and, where appropriate, be accompanied with support from people she trusts.

MENSTRUATION AND WOAAANHOOD

The impact of menstruation is not confined to specific symptoms. Exploration of the topic raises a range of fundamental issues and debates. Menstruation is a marker of femaleness and adulthood. The connection between menstruation, sexuality and fertility means that its discussion opens to scrutiny areas of life that are uncomfortable for many to consider in relation to both men and women with learning disabilities. As Ditchfield and Burns and others highlight, the very identification of women with learning disabilities as female has been problematic.

The strong sense of their identity as women, felt by participants as a result of menstruation, is illustrated in Ditchfield and Burns' paper. While this is one of the potentially positive aspects of menstruation, there may be tensions in appreciating this positive connection. Some of the participants in their study found difficulty in assuming the identity of an adult woman because of the restrictions imposed by their living circumstances. Rodgers (200Ia) describes the expression of ways that women with learning disabilities are seen as 'not like other women'. Menstrual symptoms are portrayed as 'part of having a learning disability' and there is an expectation that women with learning disabilities would not experience embarrassment in the same way as other women, that they would not have relationships and would not have children. Rodgers (200Ib) reports the negative aspects of being an adult woman described by women with learning disabilities when they were invited to consider what it meant to them. They described their experience of having an unfair domestic burden and of experiencing or fearing arguments or violence from men. They described their experience or fear of sexual assault. They also described ways in which they felt men had more freedom than women, in their social and work opportunities.

There is diversity, as well as similarity, among experiences of being a woman and experiences of menstruation. Religion and culture can influence menstrual beliefs and experiences. Severy et al (1993), in a study of more than 5,000 women from 14 cultural groups, found that women vary in their beliefs in a number of ways. They found differences in beliefs about appropriate bathing behaviour in menstruation, fertility and femininity, interpretations and implications of menstruation and whether or not to wash the hair or body during menstruation. Such religious and cultural influences on menstrual beliefs and experiences cannot be ignored if the diversity of the experiences of women with learning disabilities is to be properly understood. This reinforces Ditchfield and Burns' argument about the importance of including women from a range of backgrounds and circumstances in research. For example, Rodgers (200Ia) reports the distinctive experiences of a family carer who had emigrated from Pakistan. She also describes (Rodgers, 200Ib) the opinions of a young Muslim woman about menstruation, which were very different from those of many of the women in the study. She saw menstruation in a much more positive way, feeling it was 'exciting' and 'good' because of its association with the ability to have children.

CREATING CHANGE

Understanding more about women's experiences, especially from their perspective, is important, but only a starting point. We need to think what can be done to improve the situation. As Ditchfield and Burns suggest, more information about menstruation, that is produced in collaboration with women with learning disabilities and presented in ways that are accessible, is important. Some organisations have begun this work. For example, Hollins and Sinason (2001) have produced, in partnership with women with learning disabilities, a 'book without words', on a young woman's experience of beginning menstruation. The voluntary organisation Women's Health has also worked with women with learning disabilities to produce leaflets on period pain and on considering hysterectomy (details below).

Such initiatives can be reinforced by strategic approaches to supporting the health and well-being of both women and men with learning disabilities. Carlson (2002) describes an Australian initiative to address health and well-being for people with learning disabilities. A network was formed, initially to focus on girls and women and later broadening to include boys and men. People in the network work with people with learning disabilities and share knowledge through an inter-agency forum and an email group. They have formed working groups to develop resources about health and well-being, including a booklet and kit on managing menstruation. They have produced resources for people with high support needs, and suggestions for carers on how to provide health and well-being information for this group of people. They have also developed staff training for disability support workers.

As Ditchfield and Burns recognise, menstruation means that sexuality and fertility cannot be ignored. Tackling women's negative experiences of menstruation may assume wider reproductive freedom for women with learning disabilities. This in turn cannot be separated from tackling more generalised oppression and from the need for women to have more control over their lives (Rodgers, 200Ib). Individual actions and interventions can do much to ameliorate women's negative experiences. However, more profound change can only occur through the empowerment of women with learning disabilities through the actions of the self-advocacy, disability rights and women's movements.

References

Barnard K3 Frayne SM, Skinner KM & Sullivan LM (2003) Health status among women with menstrual symptoms. Journal of Women 's Health 12 (9) 911-9.