Refusal of Care: Women with Disabilities and Breast Cancer Screening

“Breast cancer is the most frequent type of cancer among women, yet women with a disability are less likely to have obtained a mammogram within the previous two years.”
-       - Centers for Disease Control and Prevention

      ( Copyright: serezniy / 123RF Stock Photo

I have never had a mammogram. 

Rheumatoid arthritis (RA) has given me a disability. I can’t stand and have limited mobility in my arms and shoulders. This means I can’t assume the positions required for a mammogram.

Several years ago, I had an ultrasound instead. The gel that was used was scented — I assume in an attempt to make the experience as pleasant as possible. Instead, it triggered an asthma attack that lasted for days. The next year, I asked if they had fragrance-free ultrasound gel. After an exhaustive search in the entire hospital, the answer was no. So I did not have an ultrasound.

These days, I have my own ultrasound machine that has done wonders for the pain in my shoulders. I decided to bring my own gel and called to book an appointment. At which point I was told they no longer use ultrasound for screening. I tried to explain my situation, but met a brick wall. My doctor is going to try to work the system, which apparently requires speaking nicely with them in order to not to alienate the clinic. I find it astonishing that this is necessary. Surely, all that should be required would be to say “my patient has a disability. Find a way to screen her that doesn’t involve a mammogram”? But maybe I’m being unreasonable...

Hospitals are generally fairly accessible, albeit in a rudimentary way. When it comes to doctors’ offices and clinics in the community, this is often not the case. Linda Gauthier from Québec has a disability. She also needed a mammogram. When calling ahead to check whether mammogram clinics were accessible — a necessity when you use a wheelchair — 18 clinics refused to give her mammogram. That is, they told her they did not serve women in wheelchairs because either the clinic was not accessible or technicians had not been trained in how to lower the mammogram machine. She filed in human rights complaint and the story blew up from there. The Québec Minister of Health got involved and has stated that in future, any clinics that are not accessible will not get a permit to perform mammograms. 

Women with disabilities often experience health disparity. For instance, in a 2010 study of the barriers preventing women with disabilities from getting screened for breast cancer as often as is recommended, is, believe it or not, lack of physician recommendation. In other words, doctors don’t talk to women with disabilities about getting screened for breast cancer. This is often also the case for pap tests. In a Canadian study (PDF), women with disabilities reported often only receiving healthcare in the narrow area of what is directly related to their disability.

This narrow focus is not a surprise to those of us who live with RA. We actually have a mortality gap, lower life expectancy in part due to lack of adequate primary care (before you hyperventilate, it’s getting much better). When there is a significant health issue, such as a chronic illness or disability, doctors tend to develop blinders in their approach to treatment. 

But it’s not just about that. It’s also about other types of preventative healthcare being affected by the attitudes of medical staff. Such as “ill-informed medical staff, who assume that women with disabilities are not sexually active and don’t need Pap tests.” I wonder if this is also part of the mammogram issue.

One of the stereotypes that women with disabilities face is the belief that we are asexual creatures. This belief is reflected in the lack of role models for women with disabilities, the lack of disabled women in media, movies and on TV as anything other than a poor unfortunate. It’s reflected in the fact that anyone attracted to a woman with a disability is perceived as either a saint or a pervert (because only perverts are attracted to women in wheelchairs). And it’s reflected in the common inquiry whether The Boy is my brother and the stares when we hold hands in public. 

And it is of course not just as women that women with disabilities are nonentities. It is in the world in general where there is we are not present in the workplace, in the media, in politics.

Women with disabilities are invisible. As the medical world exist in and is a product of our society, our social invisibility carries over to become a medical invisibility. When dealing with health care disparity, the focus tends to be on race and ethnicity, with very little mention of disability.  And this brings me back to mammograms. 

Not being able (or willing) to accommodate someone with a disability isn’t just discrimination (as if there is anything ‘just’ about that). In a healthcare environment it equals refusal of care. And I’m pretty sure that none of the various medical professions thought of it that way. Because people don’t like thinking about discrimination in the context of people with disabilities. I wonder what healthcare professionals would say if told they are refusing care to people who are entitled to it.

The responsibility for this gap in primary health care isn’t just located within the medical profession, but within the system as a whole. I was given a copy of a memo from a company that runs a number of diagnostic centres in Ontario (I am not specifying which company, as it may reveal my source). It states that mammography is currently the recommended primary screening tests for breast cancer for all women. Furthermore, that it is the only imaging technique licensed by Health Canada for breast cancer screening for the general population. Ultrasound is not recommended (which may be code for “not funded”). Why? According to the memo, studies have shown that ultrasound is not as effective in detecting a variety of cancers and may lead to a high number of false positives. This in turn can lead to an unacceptable high number of biopsies. 

Fair enough. In general. But not if it leads to a lack of flexibility in the system which can cause a disparity in the delivery of healthcare for certain populations in particular.

How do you fix it?

By starting the conversation about the consequences of this refusal of care. Consequences that mean people with disabilities may be sicker than they have to be. May in fact mean that women with disabilities are more likely to die from breast cancer or cervical cancer because they are not accommodated in screening tests and the cancer is therefore discovered later than it should be. 

Accommodating does not mean duct taping a disabled woman to a mammogram machine. No, I am not making that up. Accommodating means making equipment and tests universally accessible or providing alternatives. It means making adjustable exam tables the norm so women with disabilities can get pap tests. It means ensuring that all clinics and diagnostic centres are accessible, training  technicians in the simple act of lowering a mammogram machine, and finding a different way to screen women with disabilities. It means creating tests that are adaptable to a variety of levels of function, rather than expecting everyone to conform to one particular test.

To quote myself (?), it’s about throwing out the norm and finding another way to your goal. And when you’re talking about health screening, doing so could save lives.

If you have mobility limitations, you may want to read my Q&A with PJ Hamel from the HealthCentral Breast Cancer site about breast health, breast cancer screening, and alternative screening techniques


Annette said…
We ought to have a conference, or at least have this as a topic at a conference. You could do a dynamite speech. It's actually so bad that anyone with any chronic disease has to ignore their health problem to get care for another issue. So many doctors say, or their forms say "What is your ONE health issue for today?"
Person centered care? No, that's not what we see.
Did you talk to the Ontario Breast Screening Program too?

Helen Martin said…
Lene my friend must have an ultrasound each time she has a mammogram as she has had breast reduction surgery in the past which has left scar tissue throughout her breasts. Her clinic unfortunately is in Port Perry, which is too far for you to travel unless your doctor recommends it. The clinic is "Port Perry Imaging" right across the street from the hospital. Hope this helps. Gently cyber hugs going out to you. Helen.
Anonymous said…
I've said that I wouldn't post comments again because I hate BlogSpot's "prove you're not a robot" issues, but this is way too important not to express my outrage. Thank you for giving voice to this intolerable injustice.
AlisonH said…
I gasped probably loud enough for you to hear clear from there--DUCT TAPED someone?! Holy. Cow.

I know from experience that at Stanford Hospital they will, if need be, wheel a machine to your bedside to do a chest x-ray without the patient having to get up when they're too ill too. So why not a mammogram machine?
pacalaga said…
Mammograms are painful enough for me and I don't actually have a disability. I can't imagine coming at it with already-damaged shoulders and the inability to stand in a seriously unnatural position. The trend here is "mobile mammography", where they being a bus to a work site and so exams in the bus. Good luck if you can't walk up the stairs.
Nisha said…
Nice post dear.Thanks for sharing
Breast cancer screening
Anonymous said…
My wish is that the Mammogram equipment be re-designed for the comfort of the women, especially those of us with disabilities. I cannot contort my neck and upper body to get my breasts in the contraption without a faceplate in the area where my face should go, so I am twisted painfully to try to fit in it. Stupid design! Doubt it was designed by a woman.
So, I had to pay extra, get special approval thru my insurance & do the breast ultrasound instead , to get my HRT Rx from being held for ransom...and was lectured the entire time by the tech about how I needed a mammogram and that the ultrasound procedure didn't compare to the mammogram. Despite, my trying to explain that I am immobile in my neck and shoulders from fusion surgeries and degenerative bone disease. Please..push the manufactures for a redesign!
Extremely Informative

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