Pain, shame, blood, and doctors

Women’s Studies International Forum, Vol. 24, No. 5, pp. 523–539, 2001 Copyright © 2001 Elsevier Science Ltd Printed in the USA. All rights reserved 0277-5395/01/$–see front matter

Pergamon

PII S0277-5395(01)00195-9

PAIN, SHAME, BLOOD, AND DOCTORS: HOW WOMEN WITH LEARNING DIFFICULTIES EXPERIENCE MENSTRUATION Jackie Rodgers Norah Fry Research Centre, 3 Priory Rd., Cifton, Bristol, BS8 1TX, UK

Synopsis — The concerns of women with learning difficulties are rarely addressed in feminist or disability rights analyses, or indeed in most areas of public debate. It is important that we recognise that women with learning difficulties have unique experiences, and also that they share much in common with other disadvantaged women. This paper addresses the issue of menstruation, an experience common to many women. It describes the findings of a qualitative study of women with learning difficulties’ experiences of menstruation. In doing so, it not only provides insights into how they experience this important aspect of their lives, but also reveals something about how they experience being a woman. © 2001 Elsevier Science Ltd. All rights reserved.

INTRODUCTION Feminism and women with learning difficulties To understand women’s health we need to understand women’s lives, not just our body interiors (Doyal, 1995). This statement applies equally to women with learning difficulties, but too often they are seen as somehow different to other women. There is little literature that looks at the relationship between oppression and health as it relates to women with learning difficulties (Williams, 2000). While feminist theory and practice has increasingly addressed the issue of diversity between women (Doyal, 1995), some women still feel marginalised (Sheldon, 1999). This feeling has been expressed by disabled women, who also argue that insufficient attention is paid to their concerns within the disability rights movement (Kallianes & Rubenfield, 1997; Sheldon, 1999; Williams & Nind, 1999). Women with learning difficulties are particularly conspicuous in their absence from both feminist and disability rights analyses (Scior 2000), as they are from other I thank the women who took part in this study, and my advisors. The Medical Research Council funded the research as part of a post doctoral training fellowship in health service research.

areas of public debate. It is important that we recognise that women with learning difficulties have unique experiences, but also that they share much in common with other disadvantaged women (Baum & Burns, 2000). Menstruation and women with learning difficulties As Doyal (1995) argues, it is as important to reject crude difference theories as it is to reject crude universalism. This is particularly true when thinking about a group of women who have been seen as inherently unlike other women. Women share broadly similar bodily experiences, although they may attach very different meanings to them (Doyal, 1995). This paper addresses an experience common to many women, menstruation. Indeed since menstruation is only experienced by women, it can be an important marker of femaleness. The way menstruation is understood can reflect the way women are situated in any social structure (Laws, 1990). By looking at women with learning difficulties’ experience of menstruation we can learn more, not only about how they experience this important aspect of their lives, but also something about how they experience being women.

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Women’s experience of menstruation is influenced by the way it is understood in the society they live in. Many cultures have particular ways of responding to menstruation, often referred to as “taboos.” This paper makes use of Sophie Laws (1990) term of “menstrual etiquette,” which is more appropriate for the white, largely secular culture that dominates in Britain, where the study was based. This term allows recognition of the particular responses and unwritten rules, which exist in relation to menstruation, but does not imply belief in any supernatural consequence if such rules are breached. Social rules of this nature express and reinforce the distinctions between people of different social status, in this case between men and women. Laws (1990) argues that the dominant feature of menstrual etiquette in white British culture is that menstruation should remain hidden, especially from men. Laws (1990) finds evidence that responses to menstruation relate to what anthropologists term “pollution beliefs.” Menstrual blood is perceived as dirty and dangerous, despite the failure of scientific study to provide any evidence to support this view. There is evidence that the specific health needs of women with learning difficulties, for example, in relation to breast and cervical screening, are neglected (Brown, 1996). Similarly, discussions in informal settings such as women’s groups (see Clark, Fry, & Rodgers, 1998) and more formal venues, such as conferences, suggested that menstruation may not always be adequately or sensitively managed for this group of women. Literature relating to menstrual management for women with learning difficulties focuses on the elimination or suppression of menstruation, through drugs or surgery, sometimes used in anticipation of problems for pre pubescent girls. Carlson and Wilson (1994), in their study of 30 Australian mothers of women with learning difficulties, found that more than half were given initial advice about menstrual elimination without it being sought. Such an approach is unsupported by evidence of its long-term effects or its acceptability to the women themselves. Other literature focuses on the possibility of training women to manage menstrual hygiene independently. Elkins, Gafford, Wilks, Muram, & Golden (1986) described referrals to a specialist gynaecological clinic for women with

learning difficulties. Eight of 16 women referred for hysterectomy came because of “menstrual hygiene problems.” The women concerned had no gynaecological problems, and no attempts had been made to offer educational programmes to teach menstrual self care, before referral for surgery. Instead, the clinic referred the women for “behaviour modification training” to learn menstrual self-care, which they found to be “remarkably successful.” More detailed attempts at evaluating training programmes have indicated encouraging levels of success (Demetral, Driessen, & Goff, 1983; Epps, Stern, & Horner, 1990; Fraser & Ross, 1986; Richman, Porticas, Page, & Epps, 1986). Appropriate management of menstruation will necessarily be informed by subjective experiences. None of the available literature looked at how women with learning difficulties experience menstruation, the terms they use to discuss it, their feelings about the actions and attitudes of others in their social settings or their thoughts on different approaches to menstrual management. This study was planned to address this gap. METHODS Until recently, people with learning difficulties were rarely seen as having anything to offer as direct respondents in research. Carers and professionals would be interviewed, and expected to represent the person with learning difficulties’ perspective and experiences. Previous work, and a growing body of literature (see Rodgers, 1999) reassured me that I could successfully ask women directly about their experiences of menstruation. In addition, my approach was sympathetic to both feminist and disability rights critiques of research (Harding, 1987; Sigsworth, 1995; Zarb, 1992). I, therefore, wanted to ensure that women with learning difficulties played a part in the research process as a whole, not just as respondents. An important aspect of this was that the idea for research about this topic came from discussions with women with learning difficulties themselves. I set up a formal research advisory group to advise on methodological issues, but was also advised throughout the research by two women with learning difficulties. They were able to use their experiences to suggest approaches and to advise me if my plans would be appropriate and successful.

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The study was qualitative, and used grounded theory methodology (Strauss & Corbin, 1990). Twenty-one women with learning difficulties were interviewed. They were women who were able to relate their own experiences, and therefore, might be assumed to have mild or moderate learning difficulties. I wanted to talk to women in a range of geographical areas (eight in all, in the South West of England) since women’s experiences might be affected by local health and social services practices. Access was gained through intermediaries. Typically, I would telephone services in the area that I wished to include and ask who I might contact to find out if women were interested in taking part in the research. They would give me details of someone working more directly with service users, who was willing to introduce me to women who might be interested. If the woman was willing to hear more about the research I visited her, either individually or in a small group with other interested women. There was a great deal of interest in the research, I think because it was a topic raised by women with learning difficulties themselves. I explained what the research was about, what would be involved if she took part and what would happen to the information she gave me. It was important to gear this explanation to the needs of the woman, taking into account the fact that she had learning difficulties. I created a leaflet with a clear and simple explanation of the research and what was involved, with accompanying pictures, to facilitate the explanation and to give the woman something to refer to after my visit. If the woman agreed to take part I visited her again so she could sign or mark a consent form. Again, this was produced in easy English, and read out if this was appropriate for the woman concerned. The forms had a clearly defined choice of yes or no, accompanied by a “thumbs up” and a “thumbs down” graphic. It can be problematic to gain access to respondents through an intermediary; for example, it may inhibit respondents’ ability to voice their experiences, or encourage them to give a “good” public account of the gatekeeper who introduced them (see Miller, 1998). However, in this study there were positive aspects of women being introduced through another, sympathetic person. It meant that the idea of taking part in the research was originally raised by someone with fewer vested interests

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than myself. It also meant that the women interviewed had someone local to them, who understood the research and could answer questions about it. A trusted intermediary could also be available to address any longer term issues or questions about menstruation that arose after the interviews. It was important for me to recognise that many women with learning difficulties spend their lives complying with the wishes of powerful others. Whatever their relationship with the intermediary, they might perceive me in this way. I was partly reassured that women did not feel obliged to take part, since two decided not to. I interviewed each woman two or three times, at the place of her choice. The repeat interviews, along with the introductory meetings, meant that we got to know each other a little, and could more comfortably discuss this potentially sensitive area. It also allowed theoretical sampling on issues identified as the analysis progressed. In the interviews, as in the earlier explanations, I used strategies to allow the woman every chance to express herself. I avoided complex language and gave explanations for any terms that were new to respondents. As often as possible, I used the words used by the respondent in relation to menstruation. I gave brief verbal encouragement, and where relevant this is recorded in brackets. I took examples of sanitary protection products, and pictures posed by a model, of a woman changing her pad. By discussing the pictures and products, the women could talk about their experiences, without being too closely led by my questions. While I could make various attempts to involve women with learning difficulties in the research process, this should not disguise my powerful role as a researcher. This is most obviously represented by the way that I had ultimate responsibility for the analysis of the data, and for representing the women’s experiences in writing. As Brigham (1998, p. 147) reflected, “the power to represent was now in my hands.” The data was analysed using largely conventional grounded theory methods. With the respondent’s permission, interviews were tape recorded and transcribed, and analysed using a computerised data analysis package. (Where women are quoted, their real names are not used). In keeping with grounded theory, analysis was concurrent with data collection. Transcripts were coded, and themes and

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categories were developed and tested on the data. I did hold a meeting, attended by most of the women interviewed, to discuss my emerging analysis and check if it made sense to them. However, the major decisions about the way that the data was presented were mine. In research involving people with learning difficulties, the role of the researcher in representing people’s lives is particularly emphasised. While some people with learning difficulties, given the right circumstances, can participate very fully in the whole research process, the analysis of data calls for particular intellectual demands, and can be the place in the process where people are most excluded. The meeting with respondents also allowed women to compare their experiences, and to get suggestions on how these experiences could be improved. I produced an easy English leaflet, with accompanying pictures, on “having an easier time with your periods” to give to respondents. The leaflet shared ideas for dealing with the problems commonly experienced by women taking part in the study. By providing suggestions for overcoming some of the difficulties described by the women, I could try and ensure the research findings had some practical relevance to them. For individual women this might be as important as more abstract accounts of their experiences. FINDINGS Negativity The overwhelming feature of the respondents’ experience of menstruation was one of negativity. This was emphasised very strongly by some women, and many wished they did not have periods. Women described a range of ways in which their periods were experienced negatively, and explained this in some detail. Some women were off their food or felt sick, or felt generally tired. Some experienced headaches or dizziness. Of most concern, however, were pain, dealing with the menstrual flow and embarrassment. Pain Laws (1990) found that menstrual pain is rarely discussed in academic literature. She argues that it may be understood as the result of a “curse” upon women, associated with religious

beliefs. It may be portrayed as a symptom of neurotic maladjustment, being “all in the mind,” and she shows how medical researchers have gone to considerable trouble to try and “prove” this theory. It may also be portrayed as something which women “put on” to try and exert power, specifically over men. Laws (1990) quotes Illich (1976), who identifies that one person cannot experience or truly know the pain of another. She also quotes Szasz (1957), who suggests that the expression of pain is so closely associated with asking for help that pain which is unrelieved may be perceived as punishment. Menstrual pain was an important issue for many of the women interviewed in this study. R. I wish I didn’t have (periods) really. You can get some pains in your tummy. Like a stabbing pain, sometimes, but not all time I don’t get it. It’s not very nice. It’s like a migraine like that (gestures a stabbing motion) . . . It’s horrible. You can’t move then—when you’ve got it in your tummy. (Josie) R. But I don’t like them [periods]. I’m dreading it now cos’ they’re all very, very painful. Cos’ it’s really like you’ve got strucked [sic] in the stomach. Pinched hard in it. It really does. (Stella)

Women who were otherwise not able to describe their experiences in great detail were clear that period pains were a problem and returned to the subject several times throughout the interviews. Some took painkillers and found they helped. However, for other women, period pains were more of a problem because they did not have access to common painkillers. Some women were obliged to ask a parent or carer for painkillers. If this was a man, she might be reluctant to tell him she had period pains. Also, as Laws (1990) suggests, one person cannot know how severe another person’s pain is, and might decide not to give painkillers: R. Well, my carer doesn’t like me taking too many tablets like that. But when I’m at home my mum will give me one or a couple of them. But my carer won’t give me one. (Josie)

Some women had gained the impression that staff were not permitted to give painkillers. This was mentioned in relation to both the home and the day centre:

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R. No they can’t give you [a pain killer] here, not really. No I don’t think they’re allowed, I don’t think. Cos I have one when I get home sometimes. (Ruth)

Taking too many painkillers is harmful. Paracetamol, in particular, can cause liver damage in relatively small doses. However, painkillers were sometimes discussed as if they were inherently harmful or even addictive. R. I don’t take no [painkillers] at all. If you rely on pills all the time, you end up taking them constantly. Then it becomes a constant drug to your body. But the only way you cope with that is to rest and just have hot water bottles or a sip of warm drink or something. (Gillian)

People with learning difficulties have been over prescribed medications, especially mindaltering drugs (Hubert, 1991), but it is important that any reaction to this should not bar women from getting appropriate pain relief. Some women who said they would be able to take their own painkillers if they wished, were unsure how many they should take. This led to them erring on the side of caution. R. [I take] one. One a day. If it’s very very painful, I’ll take two. Q. And do they work? R. Yes, sometimes it does. (Denise)

Various other strategies were used to try and overcome period pains. Women tried warm drinks, hot water bottles, warm baths, massage and resting. Some tried exercise, taking their mind off the pain, for example by looking at a book or doing some colouring, or simply “put up with it.” This approach was not necessarily effective: R. I just do something else and forget about it . . . it’s what I’ve been taught now.

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on the idea that the cause of the pain is “all in the mind” or is being over emphasised. In the same way that Weisenberg (1977) suggests, this sort of approach helps women to bear pain better, but not to relieve it. Bleeding Another area, which was problematic, was dealing with the menstrual flow. This was difficult for women who had an additional physical impairment, which hampered the physical process of pad changing. For some women managing the menstrual flow was more difficult because they seemed to be having heavy periods. R. And they get really heavy mine. And I have to wear plastic pants because I get it on my bed and it’s not very nice. I get it all over the place. And it’s not very nice. It’s really heavy. (Josie) R. It’s stupid having periods. You get messed up. You bleed on your pants, and you get it on your clothes, and you get it on your blankets, heavy. And, it like, smells. You run a bath. You’ve got to have a bath. And you bath and you get liver coming out a bit. (Rita)

Since the literature emphasises medical interventions, it is important to differentiate between responses for abnormally heavy menstruation, which might appropriately involve medical interventions, and the management of normal menstruation. Menstrual flow need not be heavy to be a problem. Women were concerned about blood leaking on to their bed, underwear or sheets. R. I don’t want the blood on my knickers. Fill my . . . Everywhere—on my bed. I think “Oh, no.” (Samantha)

Women with learning difficulties tend to have little money (Davis, Eley, Flynn, Flynn, & Roberts, 1995). As well as the expense of buying pads, bleeding on underwear could be a source of extra expense if it ruined garments. It could also be a source of potential embarrassment.

Q. Does that work? R. Yes . . . Sometimes. (Alex)

As Laws (1990) suggests, the idea that pain can be relieved by taking the mind off it, relies

R. Well, I’d rather that (wear thick pads) than marking your clothes and your underwear. That’s embarrassing. (Gillian)

While thick pads could help cope with a

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heavier menstrual flow, there might be potential for embarrassment if they showed: Q. You were saying last week that you were worried sometimes that people would know that you’ve got your period. R. Well, I don’t know if they would know but, I mean, if you wear these big fat things (fat pads?) . . . Yes, sticking out your backside, I’m not surprised. It depends on what you wear, basically. You know, if you wear like tight trousers or something, it’s going to be pretty obvious, isn’t it? You wouldn’t say “Oh, it’s a flippin’ nappy,” would you? [Groans]. (Stella)

Bleeding heavily at night time could be unpleasant for the women if she woke up covered in blood, or had to get up in the night to change sheets and put them into soak. Some women mentioned that this would mean a carer having to change the sheets. While some respondents said that they did not think the carer minded if this happened, others were not so happy, and might “tell off” the woman. Cleanliness and pad disposal Some of the concerns expressed by women seemed to relate to the idea of “pollution” described by Laws (1990), as well as the need to follow menstrual etiquette. There was concern that periods would lead to unpleasant odours: R. It smells—periods do. (Rita)

Many women saw keeping clean as important. They described how they washed, bathed or showered during their period to keep clean and to prevent odours. One woman, who was a Muslim, described how she had a shower after her period stopped, then she could pray again. Women discussed hygienic and appropriate disposal of pads. While most women had access to designated bins in the home and in the place they carried out their daytime activities, maintaining privacy during pad disposal could present difficulties, especially if women lived in a house shared with men. One woman described how she tried to avoid embarrassment:

R. You just throw it out and put it in the bin like you’re throwing a bit of rubbish away [Laughs] and, you know, “I’m just throwing a bit of rubbish away.” You know, I’ve got to be a bit discrete if you don’t want people to know what you’ve got in your hand. (Gillian)

Women were concerned that pads should be disposed of correctly, and this had apparently been emphasised to them: R. You must never take your towel out and show it to anybody. Never take your towel out and throw it in the cupboard. Never throw it where the dirty linens are. You must never take it out and show anybody the towel in case they caught you. Never chuck it in a toilet. Just chuck it in the dustbin . . . If they found out you was doing something dirty, they’d report you. (Rita)

Embarrassment and privacy As has been suggested, respondents seemed very aware of the unspoken rules of menstrual etiquette. Menstruation was seen as a private affair, which women should keep to themselves. They described feeling embarrassment, or worrying about the potential for embarrassment. This was not only in relation to men, but also sometimes to women: R. It’s like, you know, when I’ve got periods at the doctor’s I can’t kind of let her see cos’ I get embarrassed . . .You know, she’d notice. I never used to but now if I’m due and that day I go to the doctor’s, I go “Oh, I can’t.” I can’t let her see anything . . . I do eventually but I don’t like it when I have to see the doctor with a monthly really . . . I’d rather do it without than having it . . . Cos’ I find it too embarrassing. I know she’s used to it, like she said, but I still don’t . . . I find it disgusting. I don’t like it. I don’t like anyone to see it at all . . . So I’m keeping it private— between myself. (Stella)

Women identified the people they would feel comfortable to discuss menstruation with. Most felt they could talk to their mother or sister, and to women staff in day centres, work or at home. Many women did not feel comfortable talking to their women friends about menstruation. It may be that the importance of not

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talking inappropriately (publicly) about menstruation had been emphasised and left some women without the peer support that can be helpful to women around health issues. The importance of privacy, and the potential for embarrassment, was most strongly emphasised in relation to men, in keeping with the menstrual etiquette described by Laws (1990). Almost all the women interviewed felt strongly about not taking to men about periods. Q. And what do you think about talking about periods, do you think its embarrassing to talk about periods? R. Especially in front of men. Not with, in front of men it’s wrong. (Joyce) Q. What do you think about talking to men about periods?

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R. I think it’s horrible to talk to men about that. Q. Do you? Why’s that? R. Might get embarrassed. Q. Who would get embarrassed? You or the men? R. Me. Us. I’d be too frightened to tell them. (Brenda)

Weideger (1978), takes this sense of threat of one step further and links it with the threat of rape, or “reprisals” against women who break menstrual taboos. Two respondents did make similar links to bad experiences with men: Q. What do you think about talking to men about periods?

R. No way!! R. I don’t talk to them. Q. No way. Why’s that? Q. No? Why is that? R. Ladies not men. Q. No? Why wouldn’t you talk to men about it? R. Embarrassing. (Samantha)

R. Cos’ I got raped one night and I’m not interested now. (Alex)

(I checked that this respondent had received counselling and support about this incident).

Laws (1990) argues that women feel a “sense of threat” about menstruation in relation to men. Some of the women in this study certainly expressed their feelings particularly strongly in terms of fear:

R. Ooh, don’t tell men (about periods). They might do something to you. Tell the lady privately only. Go in the room and tell her privately that you’ve got something the matter with yourself. (Rita)

Q. How about the men staff, are there any of the men staff you would ask?

Later in the interview this woman made a similar association, while looking at the photographs of a woman changing her pad, in which the pads were placed on a towel rail:

R. No, only the female staff. Q. No. Why is that then? R. Because I get scared. Q. You get scared to ask the men. Yes, why is that?

R. Don’t put your towels hanging up there. That’s not very nice where she put her towels up there to show everybody. It’s not nice . . . That’s rude. Yes, it is. Yes, I don’t do that to my towels—to let everyone know what you’ve got. If they find out that you’ve got a towel up then they might rape you.

R. I don’t want to. (Laura) Q. Do you think that’s what would happen? Q. What do you think about talking to men about periods, generally?

R. Yes.

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Q. Why do you think that? R. Yes. It will. I don’t hang mine up there. I put mine in the plastic bag—in the handbag. (Rita)

R. I prefer these because they’re more absorbent. Because they hold in place and they take a lot. You know? I can get on with thin ones for a little bit but, once I start to come on heavy, I got to keep changing. (Gillian)

It may be that women with learning difficulties, who particularly frequently experience sexual assault, are more wary of drawing attention to their womanhood in any way. Women with learning difficulties are also in a different situation to many women in that they may need help with menstruation. This may be because of their impairment, or because they had not had the chance to learn to manage menstruation independently. This meant that menstruation could not remain entirely private from men.

They could also choose the pads they found easiest to use:

R. Some—they’ve got to ask for help if they can’t do it themselves.

R. The staff buy them all from [the supermarket] and keep them in the cabinet. (Laura)

Q. Who do they ask then? Do they ask the women staff? R. Female. Females . . . They wouldn’t ask the men. They’d be a bit frightened. Embarrassed. It’s all the females they’ve got to talk to about it. They don’t like talking to men about it. (Brenda)

R. (I chose them) Because they’re comfortable. I was able to take them out straightaway. Just take the strip off, put them in my pants and take them out. (Zarina)

Carers often bought sanitary pads, even if the woman concerned felt she could manage this herself. Several women described having to ask for pads:

R. I usually ask my mum. I ask my mum sometimes. Q. You ask your mum. And does she give you a whole packet to keep in your room then, or does she give you one pad to use? R. She just gives me one pad. (Ruth)

Q. So when you’re here in the day time, or in the night time, when your period starts, is there always a woman here, or is there sometimes a man? R. Sometimes a woman, sometimes a man. I can’t ask the men. Q. You don’t ask them for a pad. R. No. It’s embarrassing. (Laura)

Women were trying to maintain menstrual etiquette in circumstances which made it more difficult to do so. Sometimes, privacy seemed to be unnecessarily compromised, when carers purchased and distributed sanitary pads to women rather than helping them to buy and store their own. Some women did choose and buy their own pads. Some had given careful thought to which towels suited them best, and the availability of choice helped them to manage their menstrual flow:

Needing to ask for help, especially if it meant asking male carers, meant menstrual etiquette was breached, which may contribute to women’s negative views of menstruation. Some women had developed strategies to deal with some of the difficulties described. Patterson and Hale (1985) describe how women create a self care process of “making sure.” This process enables a culturally appropriate response to menstruation while minimising the time and effort need to deal with it. Women are therefore able to continue their everyday lives knowing they have effective strategies in place. Some of the women interviewed for this study had developed such strategies. For example, women might carry a sanitary pad and clean underwear with them in case a period should arrive unexpectedly. Others wore a pad in readiness, if they knew approximately when their period was due. However, women tended not to have comprehensive responses to all possible difficulties.

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Medical interventions Despite efforts made to cope with menstruation in their particular circumstances, medical interventions relating to menstruation were common in the group of women interviewed. Eleven women of the 21 women had been given a medical intervention of some kind: (a) contraceptive pill: five women; (b) depo provera: three women (1 recently changed to coil); (c) hysterectomy: two women; (d) “tablets for heavy periods”: one woman. Two of the five women who were taking the contraceptive pill said they were taking it to prevent pregnancy. Both women had boyfriends. Neither woman knew anything about the pill or any possible side effects, and both were given it by staff. The other three women taking the pill were given it to help with period pains or to stop heavy bleeding. Again, all three women were given the pill by a carer and knew nothing about it. None of the three knew that the pill had a contraceptive effect. In every case the decision to ask for the pill had been initiated by someone other than the woman herself. The respondents were either neutral or supportive of taking the pill. One said that she felt much better since taking it: R. I am on the pill now. It’s helped me a lot . . . I feel great now I’m taking that . . . I feel great. Happy and that. (Justine)

Nevertheless, the woman quoted described continuing problems with her periods. One of the three women who had been given depo provera for contraceptive purposes had difficulty remembering to go for the injection, and had recently changed to the coil. Another was given it to help with her periods, which were subsequently lighter, but knew it had a contraceptive effect. Staff had taken on the job of reminding her to go for her injection by recording it in their office diary. The woman concerned liked having the injection to make her period lighter, her only complaint being that she would like her periods to stop altogether. However, she appeared to know nothing of any possible side effects or alternatives, and the original idea had come from a member of staff. The third woman said she had the injection “to stop having babies,” but it also had the effect of stopping her period. This fact was mentioned as a positive thing by staff when I first

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enquired about the woman concerned participating in the study. This third woman disliked having her depo provera injection, because she hates needles and the injection hurt. She seemed to have little choice in the matter: R. Yes. I don’t want an injection. Look. Not there. Not there. There. It hurts. I don’t like needles. (Carer) had me going for an injection. I don’t want to anymore. (Samantha)

Two women reported having hysterectomies. One of the women was unclear about her operation, which seemed to have taken place some years before, but told me that she had an operation where they took away her womb because of very bad period pains. I could not be sure that she had not confused this with a gall bladder operation. The second woman had a hysterectomy for heavy periods, also done some years previously. She was able to give a detailed account of her experience. She seemed to have had considerable problems with her periods, having had iron tablets and eventually a blood transfusion for the anaemia caused by the heavy bleeding, and a D&C before the hysterectomy was considered. This participant felt she understood about the operation and its consequences. The doctor had not asked about any plans to have children at first, but when she went into hospital they told her that it would mean that she could get married but not have children. She did not, however, know what her ovaries were, whether they had been removed or anything about the consequences of this. Both the women who talked of having hysterectomies supported the procedure and said they would advocate it for other women. R. Yes. That’s what I’d say. It’ll be good for you. No more pain, no more headache, no more stomach ache, no more backache and you’ll feel better for it. (Brenda)

One of the women advocated the operation without knowing it would prevent child bearing: Q. What if she wanted to have children what do you think then? If she thought she might want to have children in the future. What do you think, what would you say to her then about having the operation?

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R. I reckon I think that she got to go ahead. (Joyce)

Another participant had not had a hysterectomy but felt very strongly that she should be able to have one: R. But she won’t do it cos’ I’m too young. I’m only in my twenties. Q. Yes. So why do you think she wouldn’t want to do it for you when you’re young? R. Cos’ I’m too young.

that this is less likely to occur without proper consideration of the woman’s interests. However, it would be much easier to offer the contraceptive pill or injection without such full consideration. It would be easier to do this since the majority of women disliked their periods so much they liked the idea of stopping them. However, this opinion was formed in the light of little knowledge about the relevant medical interventions, and a lack of awareness of other ways of improving the experience of menstruation. This meant that women were not giving informed consent to contraception, and were not in control of their menstrual management.

Q. Do you know why?

KNOWLEDGE AND UNDERSTANDING R. I just want it done, that’s all. I just want it done then it’s out of my way. And I won’t have periods any more. Cos’ I’m sick to death of it! I don’t want kids. (No, you said to me you didn’t want them). I don’t mind looking after them but I don’t want any . . . I can’t understand what the difference . . . What’s age got to do with it? You’re either a young woman or you’re old. Q. She might think, if you’re young, you might change your mind when you get older. R. Oh, yes! If I did, I wouldn’t even have mentioned it would I? That’s what I’m saying. Q. You feel very strongly about it? R. If she thinks I’m that stupid, why would I’ve come up there in the first place? (Stella)

The frequency with which women experienced medical interventions raises questions. We know that health care decisions relating to people with learning difficulties may frequently be made by carers and professionals, with little reference to the person concerned (Keywood, Fovargue, & Flynn, 1999). We should not generalise in a quantitative way from a qualitative study, but the experience of this group of women does raise the issue of fertility control “by the back door.” That is, sterilisation and contraception offered in the name of managing normal menstruation. It may be that in England there is sufficient sensitivity around hysterectomy, following high profile court cases,

This lack of control was compounded by another common theme in the women’s experiences; that of a lack of knowledge and understanding about menstruation and menstrual management. Women who could remember their first period often knew nothing about menstruation until it began. This meant that they described the experience as “shocking.” “frightening,” “worrying” or as a “big surprise”: R. No cos’ I didn’t know what the hell it was. I know it seems stupid but I was only a teenager then. And I went to my mum and said “I’m bleeding.” And she said “Oh, don’t worry that must be your period.” And I was panicking cos’ I didn’t know what the hell it was. (Stella)

Women were more likely to be taught about menstruation once their period began, but this was not true for all respondents. Some women managed as best they could when their period started, and only got more information as time passed by: R. Well, my mum didn’t tell me anything so I just learnt by me own way. (Alex)

The women in this study are far from unusual in their early lack of knowledge about menstruation (Abraham et al., 1985; Koff & Rierdan, 1995). However, it may be more difficult for women with learning difficulties to “pick up” information on an ad hoc basis, especially if it is mainly available in written form.

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Some information may be gained from television adverts, but research suggests these portray menstruation as an unclean matter, which must be concealed (Backe, 1997). Or they may offer an unrealistically dynamic and energetic picture of menstruating women, which may cause guilt among those not feeling that way (Swenson & Havens, 1987). Most women received some sort of explanation and instructions from their mother or a teacher once their period began. Women were more likely to be taught about the practical aspects of menstruation such as pad changing and disposal, than any understanding of why women have periods and the connection between menstruation and fertility. It could be argued that the former is more necessary and possible for women with learning difficulties. However, as can be seen from respondents’ knowledge of the medical interventions they were getting, a lack of understanding of the reason women get periods, could put them at a disadvantage in having some control over their menstrual management and fertility. It may also be more difficult to tolerate negative aspects of menstruation if there is no obvious reason for its occurrence. Learning about menstruation was often an on going process, with women learning more as they got older. Some did not have the chance to have the explanations they wanted, or a chance to learn the skills they needed, until they were older and found a sympathetic carer or had the opportunity to join a women’s group: R. I didn’t know anything when I was a teenager. I knew when I got a bit older. (Stella) R. I look after my own self now. I was taught how to look after myself in adult placements, so I do now. (Alex) R. We did have a women’s group at one time at the centre and it was anything that you wanted to talk about—it can be discussed within the centre not outside. It can be discussed privately between women. It’s not to be said openly, outside, to others. Yeah. It’s a good way to help people understand how they feel. And what’s good for them is good for others. (Gillian)

Respondents who had been to a women’s group tended to be the best informed of the

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women interviewed. Other women were actively seeking knowledge and used the interviews as an opportunity to ask about matters that they did not understand. In such situations I gave simple explanations and directed women to sources of help, which had been identified before the interviews. Some women were unaware of a cyclical pattern to their menstrual cycle, which made it more likely that they would experience the unexpected arrival of their period. This, in turn, made menstrual management more complicated, as women were not prepared to cope away from familiar environments. Two women tried to use a calendar or diary to note and predict their periods, but found it difficult to manage this, an exercise which requires a certain level of intellectual ability. Two other women were helped by a carer to monitor when their period was due, using a calendar and noting premenstrual symptoms. Two women were more able to predict their periods because they experienced the phenomenon of synchronicity of menstruation, which sometimes occurs when women spent a lot of time together (McClintock, 1971). This phenomenon is potentially particularly significant for women with learning difficulties, as they tend to spend a lot of time in the company of a limited number of people. In the same way that women did not necessarily understand the pattern of their menstruation over the year, they often did not understand its pattern over their lifetime. It was unusual for women to know about the menopause. Most had not heard of the terms “menopause” or “change of life” and did not know that older women do not get periods. In view of many respondents’ negative views of menstruation, it could be seen as especially unfortunate that they did not know that menstruation would one day come to an end.

Positive aspects of menstruation We can see then, that on the whole women had a negative and uninformed experience of menstruation, which was, in turn, connected with negative feelings about it. Most women could not think of anything good about menstruation even when asked specifically to try, and used the opportunity to reiterate their dislike of periods:

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Q. No. Do you think there’s anything good about having periods Rita?

changing nappies. Sending them to sleep and feeding them and clothing them. (Angela)

R. No, it’s not.

R. I wouldn’t like to have a baby cos’ I wouldn’t know how to look after it. That’s what my mum and sister said to me. You have to feed it, and clothe it, and all the rest of it, you know. And do all sorts of things for babies. (Josie)

Q. Nothing good about it? R. No, it’s not. Periods rubbish! (Rita)

However, a minority of women were able to express some positive opinions about menstruation. R. There is a happiness thing to having your periods . . . I think it’s exciting and good. (Zarina)

Positive comments fell into two categories. Women might associate menstruation with the ability to have children. R. I think periods are good things . . .It’s nice to have them because that’s the only way you can have a baby. (Zarina)

However, most respondents did not make this connection. They might not understand the relationship between menstruation and fertility. Or, they did not see having children as a possibility for themselves, a point of view sometimes reinforced by other family members. Q. What do you think about having babies and having children? R. I don’t want one. Q. You don’t want one. No? Not everybody does, do they? R. No. If I do that, my mum will snap. Q. If you do what? R. Having a baby. I can’t do that. She told me about everything. I can’t do that. I can’t get pregnant and everything. No. Q. She would snap, would she? R. Yes. If I did that, she would shout the wall tops. (Justine) R. [My mum] doesn’t want me to have babies . . . Cause it’s a lot of hard work . . . like

Women were more likely to think of themselves in relation to other people’s children, such as nieces and nephews, than their own, and to believe that caring for a child would be too difficult for them. A more positive feeling about menstruation could also result from an association between menstruation and womanhood, and therefore feeling “grown up.” This might be especially important for women who are treated as “eternal children.” R. I started my period last week and I was so pleased . . .Because it’s . . . Because it’s a part of growing up. (Valerie) R. When I have (a period), I know I’m definitely a woman. (Christine)

However, as respondents recognised, there are potentially negative aspects of being a woman, so even if women made an association between menstruation and womanhood, it would not necessarily be a positive thing. Women might have an unfair domestic burden: R. I help my mum dry up anyway. She cooks, she washes, I dry . . . People don’t do it. We do. My brothers don’t do it . . . It’s me and mum’s doing it. It’s not fair. My mum do it all. (Justine)

Women might experience arguments or violence from men: R. Well, you’re very vulnerable . . . When a woman goes out on her own late at night, she’s out to get attacked. She might get attacked. (Christine) Q. Can you think of anything that’s not good about being a man? What might not be good about being a man?

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R. Umm, having arguments I think. Q. Who might they have arguments, do you think, with? R. A girlfriend or wife . . . I’d say they can get a bit angry as well . . . They sometimes go crazy and it’s not nice really. (Valerie)

And men might have more freedom than women: R. (men) can go out to the pub for a drink, that sort of thing. Or, I think they like to do football as well . . . And also, I think, most men like to go out to college or go to school. Q. Do you think women can do any of those things that you’ve just talked about or is it mainly men? R. Mainly men. (Valerie) R. (Women) go to work, but they don’t go out evenings much. My mum doesn’t go out much. She can’t leave me on my own, she can’t leave me on my own really, on my own when I’m in. Sometimes she take me, she takes me for coffee sometimes. Sometimes she does. (Ruth)

CONCLUSIONS When respondents thought and talked about being a woman it is striking that they raised issues—an unfair domestic burden, a lack of freedom and opportunities, and verbal and physical violence from men—which have been some of the key concerns of the women’s movement. Women with learning difficulties experience these issues in common with other women. They also experience menstruation in common with other women, but some of the negative ways they experience it are framed by their particular lives. It is thought provoking to consider what it would be like to experience menstruation as women with learning difficulties might do. To know very little about menstruation, to have unrelieved pain, the cause of which is perhaps not understood. To be embarrassed by messy bleeding, but to have to ask someone else, perhaps a man, each time you need a sanitary pad. To use the sort of pads you are given, even if they are inadequate

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to deal with the bleeding, and to “get in trouble” if blood leaked on your clothes or bed. To find it hard to dispose of your pads discreetly. To be very aware of the prevailing menstrual etiquette, but to be in a position where it is much harder to keep it. And to feel very uncomfortable about discussing menstruation with your female friends. Women with learning difficulties’ experiences of menstruation do seem to be singularly characterised by the power exerted over them by others. Other people, notably paid and family carers and doctors, are highly influential in many aspects of the women’s lives. This seems to be particularly evident in relation to menstruation. It would be especially difficult for women to resist this exercise of power, because of their limited access to knowledge about their own bodies. Their attainment of knowledge depends upon other people presenting sometimes complex information, in ways that they can understand. Why, then does the such power and control appear to be so evident in relation to menstruation? The fact that menstruation occurs means it is impossible to avoid acknowledging that a woman with learning difficulties is a woman, that she is a sexual being, and that she is fertile. This will be an uncomfortable acknowledgement for many, since it challenges some of the important stereotypes and ideologies applied to this group. It is difficult for women with learning difficulties to be acknowledged as women at all. There is little focus on women in the learning difficulties literature (Williams & Nind, 1999). People with learning difficulties are most often discussed without reference to gender. The term “learning difficulties” overshadows any other identity (Atkinson & Walmsley, 1995; Burns, 2000; Clements, Clare, & Ezelle, 1995; Williams & Nind, 1999). This denial of womanhood (Baum & Burns, 2000) may be influenced by a fear that taking on a sexual identities would lead to the expression of sexuality (Williams & Nind, 1999). Motherhood plays an important part of the expression of a gendered identity, it is assumed as women’s ultimate role, part of “proof” of femaleness (Doyal, 1995; Letherby, 1994). For women with learning difficulties this is the most proscribed expression of gender. This group, like other disabled women, only rarely has access to the adult status and acceptance into mainstream society that may

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come with motherhood (Barron, 1997; Edmonds, 2000; Kallianes & Rubenfeld, 1997). Women with learning difficulties have few opportunities to draw strength from their shared position as women (Williams & Nind, 1999). They may draw on dominant discourses (Scior, 2000) and be left with negative views of themselves, and little control over their lives and bodies (McCarthy, 1999). The sexuality of women with learning difficulties is seen as problematic. Services for people with learning difficulties in many countries have been influenced by a move to close large institutions and offer people “ordinary lives” in the community. This has not led to ordinary sexual lives, however. The sexuality of people with learning difficulties has often been characterised by stereotypes of this group as childlike and asexual, leading to a denial of their sociosexual maturity. Alternatively, they are portrayed as somehow dangerous sexually, with men seen as predatory and women as promiscuous and highly fertile (Brown, 1994; Clements et al, 1995; Craft, 1987; McCarthy, 1999; Williams & Nind, 1999). The effect of these stereotypes is that people’s sexuality is not acknowledged, or the expression of sexuality is censored (Clements et al., 1995). While the sexuality of people with learning difficulties has been more sympathetically addressed in academic literature in recent decades (McCarthy, 1999) this has not necessarily been reflected in people’s everyday lives. Brown (1994) argues that services act to implicitly regulate the sexuality of people with learning difficulties. It also seems especially hard for parents to acknowledge their adult children’s sexuality (McCarthy, 1999). The power of these stereotypical notions has influenced an “ignorance is bliss” approach. People with learning difficulties have limited opportunities to learn about their bodies, about sex and relationships (Howarth, 1995; Kallianes & Rubenfeld, 1997). Informal carers may curtail social activities to ensure that sexual activity is not possible, and not offer sex education (Heyman & Huckle, 1995). Ignorance certainly does not lead to bliss, however. There is a high incidence of sexual abuse of women with learning difficulties, including sexual assault by staff whose role it is to care for them (Brown, 1994; Brown, Stein, & Turk, 1995; Kallianes & Rubenfeld, 1997; McCarthy, 1999). Women with learning difficulties are experiencing sex-

ual activity which is not to their liking or choosing (McCarthy, 1999). Women with learning difficulties’ fertility is similarly regarded as a highly sensitive issue. The women’s movement has largely concentrated on women’s right to avoid unwanted pregnancy. Women’s lives have been constrained by a lack of choices around reproduction, and the availability of safe contraception and abortion has been an important issue (Doyal, 1995; Kallianes & Rubenfeld, 1997; Sheldon, 1999). Women with learning difficulties have more in common with other disabled women and black and minority ethnic women, in that reproductive freedom for them needs to include the right to bear children and to make informed choices about whether or not to use contraception, or have an abortion (Doyal, 1995; Sheldon, 1999). Women may have their fertility controlled by coercion, not choice, and women with learning difficulties are subject to eugenicist notions of who should and should not reproduce. People with learning difficulties, like other disabled people, have long been at the receiving end of such eugenicist attempts to develop “better human stock” (Kallianes & Rubenfeld, 1997; Kliewer & Drake, 1998). In countries throughout the world forced sterilisation is and has been commonplace, with the woman sometimes unaware of what has happened to her (Clements et al., 1995; Howarth, 1995; Marks, 1999; Park & Radford 1998; Rock, 1996). Sterilisation has occurred not only as a way of “improving the stock,” but as a means of solving social and behavioural difficulties experienced by people with learning difficulties (Park & Radford, 1998). The reproduction of people with learning difficulties has also been controlled by segregation, both away from mainstream society in institutions and by gender segregation within those institutions (McCarthy, 1999). These sensitivities and ideologies may help to explain why women with learning difficulties seem to be steered towards medical interventions that control their periods and at the same time control their fertility. Since women with learning difficulties are used to doing as they are told, and may know little about their bodies or the treatments suggested to them, little obvious coercion need be required. The woman may readily consent in view of her negative experiences of menstruation, but it may well not be informed consent. The experiences of the women in this study

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suggests that “reproductive freedom” does need to be expressed more fully for this group, as it has been for black and minority ethnic women and for women with physical impairments (Doyal, 1995; Kallianes & Rubenfeld, 1997). We need to consider what reproductive freedom for women with learning difficulties might look like. Women with learning difficulties themselves must primarily guide this mission. However, from the experiences of women in the study, and the literature that informs the interpretation of these experiences, reproductive rights for this group might address: 1. Identities. Women with learning difficulties need to have their identities as women acknowledged, as a starting point for being enabled to experience what it is to be a woman, with all the positive and negative aspects of that experience. They need opportunities to gain strength from their shared position as women (Williams & Nind, 1999). 2. Access to knowledge and understanding. Support and information must be provided in forms appropriate to the woman concerned, to enable her to have as full as possible an understanding of her body, of sex, reproduction and relationships. Women need support to make informed choices about whether to engage in sexual relationships, whether lesbian or heterosexual. 3. Control of menstruation. Women with learning difficulties should have more control over the non-medical aspects of menstrual management, so that their individual needs can be met. If attempts are made to offer sympathetic personal support around menstruation, this could not only have the effect of helping women in a practical way, but also to reinforce the similarities and connections between women with learning difficulties and the women who care for them. 4. Sexual health services. Women with learning difficulties should have contraception, abortion and other sexual health services such as breast and cervical screening available to them. They should be able to make informed choices about what is on offer. The subtle and easy ways in which these services can be used coercively with women with learning difficulties should be recognised. 5. Motherhood. Women with learning difficulties need support to make choices about

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whether to become mothers, and the issues that need to be considered when this choice is made. This aspect of reproductive freedom remains contentious for women with learning difficulties. However, if it is not expressed for this group of women, would we set an IQ at which women would be “allowed” to reproduce? What other criteria would be set up to judge suitable parents? Who would make such judgements? Clearly, any judgements of this nature lead quickly to the road to eugenics. It would be naive to think that policy makers and care providers will readily embrace the transformations that are needed. It is difficult, and probably unhelpful, to separate the reproductive freedom of women with learning difficulties and their freedom from more generalised oppression. As Finger (1984) argues, the right for women to control their bodies and the right for women to control their lives is strongly linked. If women with learning difficulties can be embraced by both the women’s movement and the disability rights movement, there will surely be more possibilities for such oppression to be addressed. REFERENCES Abraham, Suzanne, Fraser, Ian, Gebski, Val, Knight, Coral, Llewellyn-Jones, Derek, Mira, Michael, & McNeil, Don. (1985). Menstruation, menstrual protection and menstrual cycle problems. The knowledge, attitudes and practices of young Australian women. The Medical Journal of Australia, 142, 247–251. Atkinson, Dorothy, & Walmsley, Jan. (1995). A woman’s place? Issues of gender. In Terry Philpot & Linda Ward (Eds.), Values and visions: Changing ideas in services for people with learning difficulties (pp. 218–231). Oxford: Butterworth-Heinemann. Backe, Jael. (1997). Tainted femininity—Traces of traditional menstruation myths in product advertising of feminine hygiene products. Gynäkol Geburtshilfliche Rundsch, 37(1), 30–38. Barron, Karin. (1997). The bumpy road to womanhood. Disability & Society, 12(2), 223–239. Baum, Sandra, & Burns, Jan. (2000). Editorial. Waiting to be asked: Women with learning disabilities. Clinical Psychology Forum, 137( 4). Brigham, Lindsay. (1998). Representing the lives of women with learning difficulties: Ethical dilemmas in the research process. British Journal of Learning Disabilities, 26, 146–150. Brown, Hilary. (1994). “An ordinary sexual life?”: A review of the normalisation principle as it applies to the sexual options of people with learning disabilities. Disability & Society, 9(2), 123–144. Brown, Hilary. (1996). Ordinary women: Issues for women

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