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
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.
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.
Comments
Person centered care? No, that's not what we see.
Did you talk to the Ontario Breast Screening Program too?
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?
Breast cancer screening
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!