‘Waiting to be Included – Breast and Cervical Cancer Screening, Where are the Women with Disabilities?’
A paper presented by Jenny Bridge-Wright on behalf of Women With Disabilities Australia (WWDA) to the Inaugural Conference on Social Aspects of Disease, Disability and Disablement, Melbourne 1 July 2004. Copyright 2004.
Women With Disabilities Australia (WWDA) acknowledges the traditional owners of the land on which we hold this forum.
Breast and Cervical Cancer Screening – when we talk about breast and cervical cancer screening, the majority of us immediately think of well known preventative health care programs, that are fundamental to women’s health, and even more specifically would say, fundamental to women’s reproductive health. Healthcare professionals are strong proponents of the programs because to be able to reduce morbidity and mortality, it’s vital to detect these diseases in their early stages. Also women have successfully advocated and achieved recognition of these women specific health risks. The outcome being that breast and cervical cancers are recognised within the priority group of eight cancers being targeted in the Australian cancer control strategy.
But what if I were to tell you that 20% of our female population are being ignored. Their needs and their health not considered important enough to even measure if they are benefiting from these cancer screening programs. What if I were to tell you that these women are not only at greater risk of being under-screened than other women, but that a significant proportion of them are more likely in fact to develop these cancers. Critical analysis of available research seems to indicate that this is exactly the situation facing women with disabilities in Australia today. But the fact is there has been so little research undertaken that we really don’t know. However because of what we do know about women with disabilities, and their interaction in the health care system and with other social structures this statement is likely to be true. The likelihood of this statement’s truth is principally because of how these social structures respond to the dynamic interactions between women’s disabilities and their other socio-demographic characteristics of race, ethnicity, age, sexuality and socio-economic status.
In talking with you today I’ll be exploring the reasons why it’s likely that women with disabilities are at greater risk of being under-screened for breast and cervical cancer . And further, why it is feasible that women with certain disabilities may in fact be at greater risk of developing these cancers, than non-disabled women. I’ll be discussing present healthcare policy in the areas of breast and cervical cancer screening, and presenting reasons why it’s imperative that specific research is undertaken in this field in respect of women with disabilities. I’ll also be emphasising why this research is central to the delivery of informed healthcare strategies that educate, include and measure, the participation of women with disabilities, in the breast and cervical cancer preventative screening programs.
What We Know
The fact is that the up-take by women with disabilities of these preventative health care strategies is not clearly known. However there are many indicators that tell us it is probable that women with disabilities are not accessing cervical and breast cancer screening at rates comparable to women without disabilities.
There is some anecdotal information, though there is with very little empirical research which has been undertaken in Australia or even overseas. Though on considering this available information, in light of research findings on the marginalisation of women with disabilities from housing, sex education, literacy, employment support and transport; a picture of exclusion begins to form.
Having said there is very little specific research I would like to now build a picture using known facts and what little research is available, to make clear why further work needs to be undertaken in respect of this issue.
Firslty I’m going to briefly outline the empirical research that has been done in Australia on this issue. Interlaced with this will be discussion on the development of Australian public health policy on breast and cervical cancer screening.
Australian Empirical Research
The Australian Longitudinal Study on Women’s Health offers the opportunity for some limited analysis and insight into the access of women with disabilities to breast cancer screening. This study showed that despite the fact that the risk of developing breast cancer and dying as a consequence, increases with age, with the highest risk being for women aged over 70yrs, 41% of women aged 70-75 with core activity restrictions had never had a mammogram. This data set also identified that almost 30% of women in this cohort had never had a pap smear, and 39% have not had regular pap smears (Rutnam et al 1999, in Frohmader 2002).
This finding clearly created some initial concern within the public policy arena as in 1999, the Commonwealth Office of Disability (Department of Family & Community Services) commenced analysis of the 70-75 yr old cohort of the ALSWH survey to determine whether it could provide reliable data on which to base future policies, plans or programs for older women with disabilities. Unfortunately this concern appears to have dissipated rather rapidly, as in the year 2000 this analysis was abandoned by the Commonwealth Office of Disability, apparently no longer being considered ‘a priority’.
Papscreen Victoria, have now, as a result of research conducted in Australia and overseas, identified that women with sensory, physical, intellectual or psychiatric disabilities are less likely to have the regular two yearly Pap test than other women.(PapScreen Victoria 2003) Though it is understood that much of the evidence relied upon for this finding is anecdotal in nature.
These two examples given are valuable pieces of research in their own right, but they are not the necessary, large scale and specific empirical analysis of the access and utilisation of these screening programs by disabled women. However they do establish research findings that are consistent with the little international research that has been undertaken; and further, they do serve to reinforce that there is a need for further investigation to be undertaken on this issue in Australia.
Australian National Policy
Despite these research findings, at a national policy level:
- the Commonwealth funded National Breast Cancer Centre (NBCC) identifies ‘the need to reduce inequity in access to information and services for breast cancer’ but limits it’s mission in this area to Aboriginal and Torres Strait Islander women, women from non-English speaking backgrounds, and women in rural and remote areas of Australia (NBCC 2000 in Frohmader 2002).
- The Commonwealth funded National Cervical Cancer Screening Program identifies as one of it’s key elements: ‘special initiatives to promote high participation levels among under-screened groups including older women, women from culturally and linguistically diverse backgrounds, women from Aboriginal and Torres Strait Islander backgrounds, women of low socio-economic status and women who live in rural and remote areas’ (AIHW 2000).
As you can see, women with disabilities are omitted as a group from the categories of women, identified as receiving inequitable access to both information and screening services for breast and cervical cancers. The only way to change the status-quo it seems is for specific research to be undertaken on the availability of information and the access by disabled women to these screening services.
Known Factors for Under-screening
There are known factors which can inform policy makers and health professionals. These facts relate to those we know are under-screened and how their socio demographic characteristics correlate with the socio demographic characteristics of disabled women. As we continue to build the picture, this is what we find. There are particular groups of women that are under-screened for breast and cervical cancers. Those found to under-screen include older women, single women, women from lower socio-economic backgrounds, non-English speaking women, less educated women, rural women and lesbians (Orbell & Sheeran, 1993; Springs & Friedrich, 1992; Fylan, 1998; Marrazzo et al, 2000; Riain et al, 2001).
Another factor which impacts on the willingness of women to present for these screening programs is whether or not a woman has been a victim /survivor of sexual assault. The CASA which is a health service provider for such women, in Melbourne, undertook research on this issue which not surprisingly indicated that women who are the victims of sexual assault are less likely to present for cervical screening tests. On combining this knowledge with that gained from additional research undertaken that identifies that victims/survivors of sexual violence:
- Experience alterations in health behaviour which can increase their susceptibility to disease years later. (Koss, 1993);
- Experience increased general health and gynaecological problems (Springs & Friedrich, 1992);
- Engage in lower levels of preventative healthcare:and
- exhibit an increased incidence of risk behaviours, and experience higher rates of sexually transmitted infections and cervical cancer. (Astbury & Cabral, 2000; Resnick, Acierno & Kilpatrick, 1997)
We have should now have in mind a clear picture of the women who are under-screened for these cancers. Now let’s consider all of these known identified facts regarding those who are under-screened for cervical and breast cancers, and contrast these, to factors which are known about women with disabilities.
- consistently have a low socio economic status. In Australia 50% of disabled women earn less than $200 per week and only 16% earn more than $400 per week. (Australian Bureau of Statistics 1999) (Women with Disabilities Australia 2000) (Women with Disabilities 2001).
- Are more likely to be institutionalized
- are less educated (WWDA 2002);
- at least twice as likely as non disabled women to be raped or sexually assaulted. In addition to this it is estimated that 90 per cent of women with intellectual impairments will be sexually assaulted (Sobsey 1988, Sobsey 1994; Disabled Women’s Network 1994 Strahan 1997 in Meekosha 2001)
- less likely than men with disabilities, and women without disabilities, to marry. If we do marry we are more likely to divorce. (Asch &Fine 1988, Hannaford 1989, Simon 1988 in Frohmader 2002)
The correlation is clear. From this information alone I suggest it is not unreasonable to draw the conclusion that disabled women are over-represented, as compared with non-disabled women, as constituents of the group of women at risk of under-screening for cervical cancer. We are more likely to be poor; more likely to be less educated; more likely to be single, and more likely to be victims of sexual assault, and of course we too may: live in be rural areas; come from non-English speaking backgrounds; be Aboriginal; and be lesbians.
Now if you consider all that has been inferred regarding the reasons we think under-screening for cervical cancer of disabled women occurs. These reasons can legitimately be applied to the issue these of disabled women and their access to breast cancer screening. Add to this reasoning, there are also a number of common sense grounds why it is reasonable to assume that we are at greater risk of developing breast cancer. These reasons for increased risk include we have more frequent x-rays, differences in exercise and nutrition, prolonged use of certain medications and experience late childbearing or nulliparity. Women with disabilities are as likely to develop cervical cancer as women without disabilities (Temby 1996), and as such this rationale must surely apply equally as a minimum, in respect of our likelihood to develop breast cancer.
All of these differences in the lifestyles of disabled women should create a sense of urgency with policy makers, health professionals and women ourselves, that disabled women must be included as a target group for mammography and cervical cancer screening. Frankly however, and disappointingly, it doesn’t.
I feel somewhat like a bad infomercial as I have to say “but wait there’s more”. Having identified these lifestyle differences, it is important to note that there are other determinants impeding the access of disabled women to these preventative health care services. It is well documented that disabled women experience structural inequality, that precludes us from equal social, political and economic participation in society. Structural inequality thereby influences our health and health care. In focusing on the status of women with disabilities we can see how this affects our health, particularly in the context of access to the screening services for breast and cervical screening.
Disabled women’s access and willingness to attend health care services, is influenced by our status within society. As I have said we are more likely to be poor, un-educated, institutionalised, to have suffered physical and sexual abuse, and additionally we are less likely to be employed. Consequently we are likely to have low self-esteem and there is a correlation between self esteem, general health and well being and access to health care. All of these factors are also compounded by gender inequality. In combination these reasons serve to impede our access and willingness to attend health care services.
Added to this complex interplay, is the differing nature of our disabilities. As how a disability is defined impacts on attitudes and beliefs about women with disabilities and influences the interaction between us as individuals and the health care system. [(Carty, 1998, in We’re women too- Canadian WWD breast and cervical screening research) In dealing with the health care system disabled women are often treated only in regard to their disability needs, as deemed by the health professional. This means that other aspect of general health care including reproductive health may not be given attention, or may perhaps not even be considered relevant for a woman with a disability. It is well documented that there is a widespread belief that women with are asexual and as such don’t have any reproductive health care needs. ( Hershey 1994 and many others at P. 19 Frohmader 2002) On reflection perhaps the strength of this belief within health care profession is a key reason why the needs of women with disabilities historically have not been adequately considered, with respect to breast and cervical cancer screening. Though having said this, it is clearly a much more complex issue, in that there are existing social structures that interact with the nature of the woman’s disability and her socio-demographic characteristics and act as compounding reasons disabled women are not given access to these programs. These include:
- reliance on carers to identify a need to undergo screening particularly, for those in institutional care;
- inaccessible venues;
- no available or accessible transport, or means to pay for transport;
- lack of attendant care support;
- lack of information or lack of information in alternative formats;
- inaccessible examination tables, lack of appropriate other equipment such as hoist and ramps; and,
- lack of accessible medical screening equipment;
Added to these physical barriers are factors such as the attitudes of doctors, health professionals and carers towards women with disabilities and their sexual health. These views reflect broader social attitudes, are complex and often reflect a medical model that pathologises disability, rather than viewing the holistic health needs of disabled and non-disabled women alike.
Other reasons that are impeding the access of women with disabilities to screening programs include:
- That women delay seeking medical attention until they are in a crisis situation. (Fairchild, 2000:20 in WWDA2002?);
- When they do see assistance from the Medical profession there may be ‘Diagnostic overshadowing’. This describes the phenomenon where symptoms or conditions are wrongly attributed to the person’s primary disability, rather than to a separate medical condition.
- Even when a separate diagnosis is made, the prescribed treatment often doesn’t take account of possible interference or interaction with existing treatments for our disabilities; and
- Unfortunately, women with disabilities may be labeled by health professionals as ‘chronic presenters’. As a consequence investigation of a new complaint is not taken seriously, or there may be active avoidance, bordering on paternalism in dealing with the complaint. (Butler 1975:79 in Cooper and Temby, 1995)
Having highlighted why it is likely that disabled women are not achieving equitable access to information and services for breast and cervical cancer screening:
- through a comparison with the characteristics of those women recognised as under-screened categories of women; and
- indication of some of the confronting barriers which face disabled women in accessing these screening services;
I believe it is now abundantly clear that there is a need for specific and large scaled empirical research to be undertaken.
We have some anecdotal information, but this is not sufficient to fully inform public health strategies. Empirical research is vital because this is such a complex dynamic issue affected by many determinants. Having a disability does not mean that we have homogenous needs. We require differing education, support, access and equipment, depending on the nature of our disability. To fail to develop strategies to firstly evaluate our access, then educate all parties, bringing about much needed social change, will ultimately increase our participation in these preventative cancer screening programs. To do this health professionals and society in general must accommodate our differences. This is vital to ensure that we do not unnecessarily experience higher rates of morbidity and mortality than women without disabilities, in respect of breast and cervical cancers.
To sum up within Australia there has been extremely little empirical research undertaken in respect of the access of women with disabilities to breast and cervical cancer screening. The majority of information that we do know is as a result anecdotal evidence. Within Australia there has been effectively no substantial empirical research specifically undertaken on: the access of women with disabilities to breast and cervical screening; nor, on whether women with certain disabilities may be at increased risk of these cancers, through considering for example, differing reproductive health in women with particular disabilities; or, assuming the hypothesis WWDA presents is correct, on the reasons why we have lesser participation rates than women who are not disabled.
It is imperative that specific research be undertaken to evaluate this issue. Disabled women and organizations such as WWDA that advocate for our needs need this evidence to support our calls; to develop strategies that educate, include and measure, the participation of women with disabilities in the breast and cervical cancer preventative screening programs. Whilst governments and health professionals do nothing, women with disabilities are waiting to be included in breast and cervical cancer screening programs. Whilst women with disabilities wait to be included, there are disabled women in Australia who will unnecessarily suffer pain and ill health, and will die.