This article was first puiblished in the November issue of Pink Magazine –  view it here

Late on purposeby Rosette Gatt

October is over but we’re about to talk about Breast Cancer Awareness again. We  waited for ‘the specific month’ to be over in order to purposely amplify what usually happens to women with disabilities – they tend to be forgotten, until it’s too late.

 Women with disability are not immune to Breast Cancer, but according to researcher Claire Azzopardi Lane “it is often misguided assumptions that frequently lead to consider breast screening for women with disabilities unnecessary.”

Ms. Azzopardi Lane added that “…growing evidence suggests that women with disability are more likely to experience a number of risk factors associated with breast cancer, thus placing them at an advanced threat of developing breast cancer when compared to women without disability. These risk factors include: leading a sedentary lifestyle, having low levels of physical exercise and consuming a high fat diet, all of which can contribute to obesity which is considered a significant risk factor for breast cancer. In addition, women with disability are reported to be more likely to develop breast cancer as a result of nulliparity (not giving birth).”

Azzopardi Lane’s findings are corroborated by international ones – “…women with intellectual disability are more likely to be diagnosed at a more advanced stage of the disease, as symptoms or conditions are often wrongly attributed to the women’s primary disability.  Furthermore women with severe intellectual disability have much less opportunity of being screened when compared to women with mild intellectual disability. Whilst women with additional mobility impairments are reported to have significantly lower odds of receiving breast screening.” US National Library of Medicine, National Institutes of Health (2010)

 Unfortunately, but perhaps expectantly, screening tests are described as an ‘upsetting experience’ by most women with Intellectual Disabilities.

They state that they feel confused on how and why they have to perform self-examination. They are embarrassed when a medical professional does this, they are self-conscious because of exposure and most do not understand the purpose of the test. When it comes to mammography, the experience is described as ‘distressing’ because their perception is informed by inadequate knowledge, anxiety, and insufficient preparation.

 Women with an Intellectual disability commented on:

  1. The lack of knowledge about the test procedure.
  2. Little understanding of cancer and the relationship between mammograms and cancer.
  3. Insensitivity of staff: Patients’ comprehension is sometimes underestimated and so comments are passed in front of them. Some comments made by the staff make them feel ridiculed or singled-out.
  4. Some may need visual cues, more time to understand, or physical support to actually be able to carry out instructions given.
  5. Pain during the procedure made them panic.
  6. Their height in relationship to the x-ray machine is not always taken into consideration and no provision is made for this.

Carers and practitioners are sometimes reluctant to propose the screening tests because of the belief that women with intellectual disability would not understand the procedure and would be anxious or afraid when undergoing one.

As a result the rate of screening of women with disability is lower than that for the general female population. Both the UNCRPD [United Nations Convention for the Rights of Persons with Disability] and the National Disability Policy underline the necessity to provide a structure that allows women with disability to access breast cancer awareness and education campaigns, together with the possibility of adequate breast cancer screening.

Inspire works with women with different disabilities on a daily basis. Research and experience, has taught us that when addressing cancer prevention intervention, it is essential that counseling these women in the clinical setting prior to the intervention itself will help minimize apprehension. Women should always be accompanied by family members, carers or best friends as this will lessen their anxiety. Below are some steps one can also refer to so as to make this experience less frightening.

  • Family or professionals should support the woman by discussing the procedure prior to this happening.
  • Watching a video or accessing a simple social book or a series of flashcards can help support her understanding in this.
  • Physicians or other professionals working with this population should focus their description of the breast examination and mammogram to include details about where it occurs, how long it takes and what the experience will be like, as well as a brief explanation of why it is necessary.
  • If a woman does not know what cancer or its consequences are, she should be instructed in this, using resources [such as a social story] that can help her understand.
  • When discussing self-examination, the use of a demonstration on a dummy or video clip may make the teaching and understanding easier.
  • Professionals performing the procedure may not understand the disability and the challenges that go with this, so they need to be informed beforehand so as to make any necessary preparations.
  • The woman may benefit by requesting the last appointment of the day thus reducing hurried procedures and explanations.

Inspire believes that everyone has a right to equality and inclusion. Our mission is to try to help everyone with a disability achieve this. We do this by providing individuals and their families with educational, therapeutic and leisure services. We also advocate for inclusion, educate the general public, raise awareness among peers, and hold the best knowledge base on disability on the island.