With the toll of daily living it is becoming increasingly important to look after one’s health and to strive for healthy living. Persons with disabilities should continue to strive to live healthy as this will contribute to increased quality of life.
The UN Convention on the Rights of Persons with Disabilities – Article 25 – mentions that …”States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation…”
The 2013 World Report on Disability published by the World Health Organization and the World Bank states that ….”Increasing evidence suggests that people with disabilities experience poorer levels of health than the general population. ..”
“Women with Disabilities, of all ages often have difficulty with physical access to health services”.
(Committee on the Elimination of Discrimination against Women General Recommendation 24) Women and Health, in relation to the Convention on the Elimination of All Forms of Discrimination against Women (Article 12) (Twentieth session, 1999, paragraph 25).
This is the case for women with disabilities as it is often a challenge to find an accessible clinic that can endeavour that physically disabled women have successful medical check-ups and mammograms. For women in wheelchairs and on crutches who is unable to climb stairs, it is also important to find a clinic/health care facility that strive to be accessible, e.g has designated disabled parking, an accessible entrance and inside the venue, equipment that is flexible and also medical staff with a positive attitude that has an understanding of your disability and will do their utmost to ensure a successful examination.
Having a disability does not mean that you are exempted from getting breast cancer. The South African National Cancer Registry states that one in 29 women in South Africa will be diagnosed with breast cancer. According to the National Cancer Registry breast cancer is the most common cancer amongst women.
“Studies also show higher rates of death related to breast cancer among women with a disability, even when diagnosed at the same stage as women without a disability. Having regular mammograms can lower the risk of dying from breast cancer”. (Susan G Komen for the Cure)
Breast cancer is treatable when detected early. It is also important for all women to examine their breasts regularly, to undergo medical check-ups and have mammograms done. http://www.cansa.org.za/womens-health/
BARRIERS TO SCREENING
Susan G Komen for the Cure provides the following information on women with disabilities and breast cancer:
Research has shown there are some reasons why women with disabilities may not receive breast cancer screening:
1. It is hard to get to the right place where the screening is offered:
- Women may have a hard time making and keeping medical appointments. For example, a woman who is deaf may not be able to easily contact a clinic that does not have a telephone system for the deaf.
- Facilities for breast cancer screening are not always easy to get to for some women, such as those who use a wheelchair. For example, there may not be a ramp or dressing room that is large enough to fit her wheelchair.
- The mammography equipment may not be easy to get to for women who have trouble walking or standing still in one position. For example, mobile mammography vans are not always wheelchair accessible. Mammography equipment may not adjust enough to allow some women to easily position themselves or sit while being screened.
2. Some disabled women believe that they are less likely to get breast cancer than other women, since they are already coping with one disability. They may believe that “lightning doesn’t strike twice.”
3. Health care workers may not know how to make sure that disabled patients get the breast cancer screening they need. They may focus on the disability and not screening for breast cancer.
SUCCESSFUL SCREENING FOR WOMEN WITH DISABILITIES
Susan G Komen for the Cure provides further information on how to ensure that you may have a successful breast screening:
- Find a doctor who is sensitive to your needs. Ask friends who they recommend.
- When scheduling a mammogram, tell the clinic about your disability. Let them know how they can help you get screened. It’s important to talk about this up front, since some clinics may not be right for you. For example, if you find it hard to stand during a mammogram, ask if you can sit instead.
- Ask your doctor to perform a clinical breast exam.
- If you are able, get to know the way your breasts look and feel. This will help you to know when something has changed.
- If you are not pleased with the services you receive, speak up. Too often, clinics don’t know how they need to improve their services to meet their patients’ needs.
- Bring a friend or someone you trust with you. They can assist you and support you, when needed.
More information provided by CANSA on what cancer is, what causes cancer and preventative measures that can be taken.
Creating Awareness Among Disabled Women to Reduce Cancer Risk
Many women with disabilities are diagnosed with cancer. There is a big risk of late diagnosis of Breast Cancer among disabled women, as this group of women is not always targeted during information sharing campaigns, as the focus remains on their particular disability.
MULTIDISCIPLINARY BREAST HEALTH CENTRE
Based in Panorama Cape Town, the centre is off-road with disabled parking available directly in front of the door. If you require parking at the front door, please request this when making the appointment. We will then reserve the parking space for you at the time of your appointment, and/or do the necessary to accommodate your needs.
The lack of steps provides easy access to the reception area where there is more than adequate space for anyone with limited movement or utilising a wheelchair. A ramp is available for wheelchair use in the imaging department.
Below is the story of Mrs M, a woman with a disability who was diagnosed with breast cancer. She describes how myths and misconceptions of her disability, down played the cancer and the impact it had on her life and her quest to survive. Losing a breast was not considered to be an issue by others, because after all she is a disabled woman – meaning she is considered not to be a complete woman.
Mrs M had to be “double” strong as she had to fight 2 battles simultaneously, namely having to deal with misconceptions and negative attitudes of her disability and womanhood, whilst at the same time having to fight the breast cancer.
She is not just a cancer survivor, but a remarkable tenacious woman (with a disability) who did not allow barriers and negative attitudes to ruin her life, however difficult it was at times.
We trust that her breast cancer story will raise awareness amongst health care professionals, women and all other persons. As women with disABILITIES, we celebrate our womanhood, our sexuality and sensuality. Breast cancer affects us as it does all other non-disabled women.
Me and the big “C” word……
Mrs M’s story
To be diagnosed with cancer was certainly no “walk in the park”, but I kept on motivating myself with the following:
- I am not the first or the only person who was ever diagnosed with cancer
- I knew of many women who travelled the cancer road WITH a smile
- And….. I overcame my acquired disability and “walked” out as a much stronger woman with a clear focus for the rest of my life.
Yes, the diagnosis, the abrupt operation (with absolute no comprehension of what to come), the treatments, the loss of energy and the grief was a huge challenge.
But my BIGGEST challenge was none of the above. It was people’ perceptions, words and actions regarding my disability that proofed to be the most devastating in the first 18 months after diagnosis….
At first NOT ONE PERSON (except the surgeon) discussed the cancer or the influence thereof on my life! Nobody mentioned my grief. It was as if the cancer did not exist. Everybody was emotional about the fact that I acquired a disability “and now this!....” Everybody had a perspective on why a person with a disability may not have cancer. It was often mentioned and in the process it felt as if my cancer became a secondary issue to my disability. I was grieving because of the cancer and absolutely fine with my disability!
On the other side of the coin: Some people could not understand that I grieved for the loss of a breast. Their perception was one of “but you overcame your disability, this must be a breeze….” I was often asked how I can “complain” about the loss of a body part (that have a HUGE impact on your sense of being a women and your sensuality) if I can’t walk.
My experience regarding this was that my disability was constantly used as a measurement of my allowable grief!
Another impact on my life and especially my emotional wellbeing at the time was that other women (able) could not understand that I saw my breasts as an expression of my womanhood and my sensuality. I was asked why I want breasts “if you can’t have sex”. Even if I disclosed that I am a married woman, the perception that women with disabilities are asexual weighed more.
This misconception really added to my grief, as I suddenly found myself in an environment where I was perceived as completely asexual, with absolute no right on womanhood. If you add to this a shattered self-esteem, feelings of inability, loss of a body part, severe nausea and exhaustion, insecurities regarding your sexuality and your ability to fight the cancer, it becomes a devastating and VERY disabling situation.
Another challenge was that I need BOTH arms to propel my wheelchair, and with the mastectomy it was impossible to use my right arm for 6 weeks. This left me dependent on other for everything. So in my case the cancer also caused a complete loss of independence. I think the hardest part was the fact that I needed assistance with everything, including bathing. When it was bathing time, I did not have the time to grief on my own, and worse, whoever assisted me saw my scars and my loss of a breast. This left me so vulnerable….. I was not ready to look at myself in a mirror, and I was in a situation where I HAD to allow someone else to see…..
Another challenge that I still experience: Only a very few medical centers has the medical equipment and technology to perform the necessary tests (Mammograms) on a woman with a mobility impairment and who cannot stand. (99% of the machines cannot move up and down, and if you cannot stand to enable the medical personnel to perform the mammogram, they simply pull and stretch you till your breasts can reach the machine….. I still belief that if the testing facilities for my mammogram that I had 4 months before my diagnosis were accessible, I would have been diagnosed earlier. How can a correct diagnosis being made if your breasts can’t reach the machines?
The aim of Cancer Buddies is to provide support to newly diagnosed cancer patients when treatment starts, to assist with the initial adjustment to the process. This service ensures that cancer patients and their caregivers have access to support services.
Cancer Buddies has established branches in the Western Cape, Pretoria Johannesburg and George. All their volunteers and caregivers are cancer survivors and have been through the cancer journey themselves.