Tuesday, October 21, 2014

Refusal of Care: Women with Disabilities and Breast Cancer Screening

“Breast cancer is the most frequent type of cancer among women can’t 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

Wednesday, October 15, 2014

Fashion for Real Life: Clothes for People with Disabilities

Living well with a disability has a lot to do with finding new ways to do things. Likewise, accessibility is about throwing out the norm and finding another way to your goal.

“Izzy Camilleri has seamlessly united fashion, form, and comfort by defying centuries of design and pattern-making conventions. Most fashions are designed for a standing or walking ‘I’ body, and become distorted when sitting. IZ Adaptive are radical because they are cut to the form of a sitting ‘L’ body, making them classics when seated and avant-garde and unconventional when standing. IZ Adaptive is a fashion revolution and revelation.” 

This is some of the introductory text for the exhibit Fashion Follows Form: Designs for Sitting currently at the Royal Ontario Museum (aka the ROM). This exhibit explores the fashion of IZ Adaptive, fashion designer Izzy Camilleri’s line for people who use wheelchairs.

Yes. Accessible clothing. More than that, it’s accessible clothing that looks damn good.

Last week, I attended Fashion for Real Life, a panel discussion about the IZ Adaptive fashion line at the ROM to hear more about how it started and the difference it’s made in the lives of people with disabilities.

Before we got started, Alexandra Palmer, the curator of the exhibit, talked a little about how she discovered IZ Adaptive and how the exhibit came about

The panel discussion itself was moderated by Jeanne Beker, iconic fashion reporter and influencer.

I have to mention that Dini Petty, equally iconic reporter, was at the event, too. They have both been a huge part of my life and television habits over the years. I was completely starstruck. I recently saw in an article that Dini Petty has moved to my neighbourhood and very badly wanted to say hi and welcome to my neck of the woods. I moved towards her and backed off several times, overwhelmed by shyness. It was completely ridiculous, but The Boy and his sister thought it was hilarious. When I finally got up the nerve, she was gone.

Moving on.

On the panel was Izzy Camilleri, Barbara Turnbull, journalist and the person who sparked the idea, and Luke Andersen, engineer, creator of  Stopgap (a brilliant way to reduce barriers and raise) awareness  and IZ Adaptive customer.

Barbara Turnbull is a bit of a legend in Canada (before and after the panel, she was surrounded by people. Didn’t get to say hi to her either). Barbara deserves her status. She’s created a life and a career as a journalist (among many other things) after becoming a quadriplegic as a result of a shooting when she was 18 (you can see her story here). About 10 years ago, she was looking for a cape that could keep her warm while also being fashionable. Shouldn’t be too difficult, right? Actually, finding good outerwear is near impossible when you use a wheelchair. So she called Izzy Camilleri and asked if she’d make one. And that was the beginning of IZ Adaptive.

At the panel, Barbara told a story of how Izzy then had an idea about a line of clothing for people who use wheelchairs. Barbara also mentioned how she thought this was absolutely crazy and “would never happen.” It took a while, but IZ Adaptive was launched in 2009. I remember when this happened — I have friends who live in the area of the store. I also remember seeing the mannequin used in the store. Or rather, the mannequal. Extraordinary.

I was really excited. The idea that someone would design clothes specific to the needs of people who travel seated all day, every day, was revolutionary. Why?

Well, clothes for people who sit need to be different. Pants are normally made for standing. Think about when you sit down wearing a pair of pants. All of a sudden the material bunches at the front (so not attractive) and the waistline goes down at the back (very undignified). Capes need to be long enough to cover your lap, because what with being horizontal, it otherwise gets soaked in rain or snow. Izzy also designs coats, long in the front and cut in the back so those who are seated can wear a classic trench coat or, new this year, parkas. Imagine parkas for wheelchair users!

Then there are jackets. When you’re sitting, they need to be shorter. As well, when you need help putting on a jacket, it can be very difficult. Some of Izzy’s are perfectly designed for this, being open at the back with a strap across to keep the jacket looking perfect. More than that, this also makes it easy to ask someone to help you take off or put on the jacket. Luke summed it up neatly, saying “before, I always kept my jacket on. Now I can ask someone to help me take it off.”

I relate to that. I’m usually cold when I go out because I can’t put on a jacket or coat myself and I’m not about to ask a stranger to help me. When you have a disability, there is often a special way to help you put on your clothes. Unless someone’s been trained in how to do it, they don’t do it well or accidentally hurt you. So you end up dressing for somewhere in between, leaving you too cold when you’re outside and too warm when you’re inside (or the reverse in summer).

Another issue is wrinkles. When designing for people in wheelchairs, it was important to know where there can’t be wrinkles and why. Why? For people who are paralyzed, a wrinkle in the wrong place can lead to a pressure sore in one day, a sore that can take months or years to heal.

Getting back to the pants, because they illustrate brilliantly the revolution that is IZ Adaptive. Izzy told us that the current style of pants has actually only been in existence for a couple of hundred years. Prior to that, there was a lot of extra material in the butt, which was normally covered by a coat. A similar approach was used in the bustle dresses, fashionable in Edwardian times.

Izzy threw out conventions about cut and construction and adopted a style with less fabric at the front and a butt that is structured with more material. It’s uniquely designed for the L-shaped body.

Luke explained how the fact that these pants don’t ride down in the back has made a tremendous difference in his life. “When transferring out of the chair on e.g., a plane, you’re not exposing yourself to a stranger.” This design is not only functional, but gives you back your dignity.

The exhibit included plaques with the photos and stories of real people who use IZ Adaptive clothes. One of these included the quote “whether standing or sitting you want clothes that make you look good and feel great.” And that’s what it’s all about.

I’ve recently become one of those real people. IZ Adaptive has a great sale at the moment and I bought two blouses. This is the first time in over a decade that I’ve been able to wear a blouse and the first time ever that I've been able to button it all the way down. Sitting down makes the latter impossible. As well, the Humira-related weight gain of the last several years has made me a bit more generous around the middle, exacerbated by sitting down. Normally, I can’t wear a button-down anything because the bottom buttons can’t close. My new blouses are A-line and there is plenty of room for all of me (lots of room. Next time, I’m buying a smaller size). More than that, the sleeves are three-quarter, designed to make sure they don’t get into the wheels of manual chairs. For me, it means something else. My arms are shorter than normal, due to the steroids that saved my life when I was 12. Normally, all my sleeves are rolled up, but on these blouses, they look like they were custom-made for me. And the last really nifty feature is the magnetic closures. Because of the fusions and deformities in my fingers, my manual dexterity isn’t great. I can do buttons, but it’s difficult. The magnets make it easy.

You may have noticed that there is one person missing from the photos in this post, namely the designer herself. That’s because I was completely dorky and asked if she would pose for photo with me. So here we are, me, my new blouse, and the amazing woman who designed it.

IZ Adaptive has a store in the west end of Toronto, but their website is open 24 hours a day and ships internationally. The Fashion Follows Form exhibit is that the ROM until January 25, 2015. If you’re in Toronto, go see it. It will blow your mind.