Author: Katarina Zulak

Hi there! I am a health writer, health advocate and all-around health nerd. Eight years ago I was diagnosed with chronic pain & illness. On my health journey, I've learned the power of self-care skills to improve my health and well-being. As a Chronic Illness Blogger I am excited to educate and inspire others to be skillfully well, even if they have a chronic condition!

Is Your Disability Your Personal Problem, a Social Problem, or Both?

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So you have a chronic illness. Is that a disability? If it means significant restrictions to your daily activities, then, according to medical and government guidelines, yes, you have a disability. This may challenge the abilist stereotypes you might have absorbed from the media, where disability is usually linked to the need to use a wheelchair because of a spinal cord injury or limb impairment.

This might get you wondering about what exactly the definition of disability is, how do we usually understand it and what does that mean for how we value ability/disability. Mainstream medical models say the problem lies within individual bodies. Disability advocates say the problem lies in our inaccessible and abelist society. I wanted to post an excerpt from my instructor on disability studies to clarify these models and meanings:

 The medical model of disability positions disability as an individual physical problem.

The charity model sees disability as an individual personal tragedy that should elicit our sympathy. Dossa (2005) refers to this as the “personal tragedy model” of disability. The “supercrip” model positions disability as an individual challenge over which someone can triumph by dint of hard work and elicits our admiration. In the moral model, the inherently negative stereotype of disabled people, which as Kumari Campbell (2008) points out links to self‐hatred, is something to be borne solely by disabled individuals. What all these models have in common is that they individualize disability, problematize disability and locate disability in individual bodies that are defined as wrong (Wendell, 1996, p. 360). These all serve to “other” disabled people.

Wendell believes that none of these models serve disabled people. She explores and explains the social model of disability as a more useful alternative. This model, which came out of the disability rights movement turns the focus away from disabled people and disability and onto the able‐bodied and ableism. Framing disability as a social justice issue means that the difficulties that face disabled people are located within disabling social structures and attitudes.

The social model arose through the disability movement’s critique of responses to the care needs of disabled individuals. Through rejecting the medicalised or therapeutic model of disability in which power lies with professionals and disability is pathologised and individualized, the category ‘disabled’ was transformed into a collective political identity. Disability is understood as being constructed not through physical or mental impairment but through social, cultural and environmental barriers such as inaccessible education, housing, public spaces and employment environments; discriminatory health and social service systems; absent or inadequate benefits; and negative cultural representations. The social model requires us to engage with the marginalization and exclusion that disabled people are forced to face in disabling environments and challenge medical and social responses that enforce dependency.

What does it mean for our practice and for us as people, if we understand disability as individual rather than social? How is our practice impacted if we see most disabilities as resulting from individual failure to properly manage one’s life and avoid risks – including the relatively new requirement that parents/ mothers use genetic testing or amniocentesis to avoid having a disabled child? Alternatively, if we work from the social disability model and “value the differences of people with disabilities…what implications does that have” (Wendell, 1996, p.8) for our practice?

Most commonly, doctors are given the right and the authority to decide whether or not someone is disabled and to define the nature of the disability. What a doctor decides can and does determine access to benefits and entitlements. As Wendell points out, defining disability serves a larger political purpose. It reinforces the idea that disability is located in individual bodies (or brains); it makes disability into a problem of the disabled person; and it reinforces the power of doctors to pronounce on disability. But what then happens for people with unrecognized, undiagnosed or undefined problems? Where does illness, especially chronic illness, fit into disability definitions?

 Macias, Teresa. (2015). Unit 3: Disability theories and models. Accessed online Jan 26, 2015.

On being a Supercrip and Overcoming Disability in the Media

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This is an assignment for my disability studies course in my social work program. The purpose of the assignment is to identify different models of disability in the media by reviewing a news article. This one looks at the construction of the ‘supercrip’ (super cripple) who ‘overcomes his/her disability. Let me know what you think of this image – inspiring or unrealistic?

Learning Activity 3.1

The article I chose for this Learning Activity describes how a disabled man named Luke Anderson started an initiative called STOPGAP which works to improve the accessibility of Toronto’s built environment by providing ramps to local businesses for free. The primary model of disability employed in the article is the charity model, specifically the construction of a ‘supercrip’. The narrative describes how Luke Anderson was once a star athlete, when a tragic accident left him with a spinal cord injury. Fortunately, “Luke Anderson showed that what he has inside is the tenacity to tackle problems of getting around the big city, for himself and others, when you are physically challenged” (Fatah, 2011). The author initially invites the reader’s pity, by, for example, noting how Anderson is now dependent on help to get dressed in the morning. As Withers (2012) describes, the construction of a supercrip is complete when pity is transformed into inspiration (p. 71). Fatah (2011) accomplishes this when she describes how Anderson has not only overcome the challenges of his own disability, but is also working to help overcome “the environment of ordinary life itself”.

Anderson’s disability is constructed in the article as a physical impairment resulting from an accident. His disability is understood to be a medical problem located in his individual body, which is consistent with the medical model of disability, rather than the result of societal oppression and marginalization, as in the social model of disability (Withers, 2012). Although the author focuses on urban accessibility, the solution is framed in terms of the charity model. The author describes the nonprofit STOPGAP’s ramp project in laudatory tones, with no mention of government’s failure to implement the Accessibility for Ontarians with Disability Act, which is meant to make Toronto “barrier free” for disabled people.

Luke Anderson is a white man with an excellent education. His relative privilege is not discussed in the context of the author’s description of him as a supercrip. No other structural factors are mentioned in the discussion of accessibility of the built environment. I would have thought that a discussion of poverty and class would have been incorporated, as it is well-known that exclusion from workplaces and educational institutions because of their inaccessibility affects the economic security of people with disabilities. Overall I found this to be a light and superficial discussion of the issues.

 

The Ramp Project: tackling access for the disabled one storefront at a time

By Natasha Fatah, CBC News Posted: Dec 01, 2011 6:19 PM ET

 

It has become a mantra of our progressive, polite society to insist that appearance doesn’t matter, that it’s what inside that counts.

But, fair or not, our physicality affects not only the way we live and what we are able to do, but how others perceive us.

Luke Anderson has been on the extreme ends of the physical spectrum, the ability one as well.

As a child and young adult, he defined himself primarily as an athlete. If an activity involved a ball, a chase, a run, a ski, a dive or a bike — Luke was interested, and he excelled.

His physical strength and love of activity dominated so much of his life that upon graduating from university, he moved from the Toronto area to Rossland, B.C., to, as he puts it, “do nothing but mountain bike.”

 

Luke Anderson, speaking at the Canadian Urban Institute forum in November 2011. (Marlena Rogowska)

But one day in 2002, a biking accident resulted in a massive spinal cord injury that changed his whole life as he knew it.

Anderson lost the ability to walk, as well as most of the control of his hands.

He went from being a popular, all-around star athlete, and a pillar of strength, to a young man who needed help getting dressed in the morning and must use a wheelchair.

It was challenging to say the least. But these are the times when it is what’s inside that counts.

And Luke Anderson showed that what he has inside is the tenacity to tackle the problems of getting around the big city, for himself and others, when you are physically challenged.  

Just getting around

At a recent Canadian Urban Institute forum on accessibility and cities, Anderson gave a presentation to a group of about 100 people, who were charmed by his easy, surfer speak and intrigued by his message.

He talked about the obvious things involving the physically disabled, like wheelchair ramps and push-button door openers.

But he also opened our eyes to the things most of us don’t necessarily think about — like how difficult it can be to navigate a narrow apartment elevator when you are in a wheelchair.

Most elevators are big enough to allow a wheelchair to get in, but not to turn around. So if you are in a wheelchair by yourself, you don’t always know if you have reached your floor because your back is towards the numbers and the door.

Then there is the problem of getting out of an elevator. You either back out and risk running into someone or something because you can’t see clearly where you are going; or you try to manoeuvre a challenging three-point-turn within the confines of the elevator itself.

Redesigning the city

For the physically disabled, there are also issues with those everyday things that “seemingly” have nothing to do with accessibility — like air conditioning.

 

Former British PM Tony Blair places a temporary ramp in front of 10 Downing St., the official residence, for a visitor in 2005.

Anderson told his audience that because of his physical status and the fact that some of his muscles don’t get used enough, he has really bad circulation.

So the extra-cool air conditioning in most of our big office buildings and retailers actually affects his health directly by slowing his circulation even more and causing numbness.

Used to having defined himself by what he could achieve against the toughest of physical environments, Anderson now has given himself a new challenge — to change the environment of ordinary life itself.

An engineer, with a job in a successful Toronto firm, Anderson is also the founder of  STOPGAP, a group of artists, design professionals and architects that wants to transform Toronto’s built-up urban environment into “a place where everyone has access to what they desire through art, design, discourse and community action.” 

The first place he started in on was his own neighbourhood.

The Ramp Project

Despite all the progress, technology and social will that is out there, Anderson still found it difficult, if not impossible, to access many of the local businesses, shops, restaurants, cafes and bars nearby, primarily because most storefronts have a single step.

 

A brightly coloured Ramp Project ramp in a Toronto neighbourhood. (Stopgap)

That is one small step for someone who can walk. But it can be a giant obstacle for someone in a wheelchair.

So Anderson and STOPGAP began what they called The Ramp Project, a simple but effective plan to build and provide temporary, weatherproof, slip-resistant ramps to local businesses at no charge.

The materials and money are donated by sponsors and the labour is provided by volunteers. And because the ramps are viewed as “temporary,” they don’t have to fall within the strictures of the building code. 

STOPGAP hopes that their colourful ramps will become a staple throughout the city, and maybe even other Canadian cities, until permanent accessibility solutions can be found.

The result has been a dozen or so brightly painted, cheerful and useful ramps along a West-end neighbourhood, to help not only people with physical disabilities, but the elderly, parents with strollers, pregnant women, people carrying heavy packages. The list goes on.

That’s the thing about improving our built environment to make it more accessible. It doesn’t just help those with disabilities, it improves the standard of living for all of us

 

First evidence of neuroinflammation in brains of chronic pain patients – Medical News Today

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Research shows a new marker for the intensity of pain, as well as a new area for the target of pain medications – in the glial cells that surround nerves and provide structure and support.
http://www.medicalnewstoday.com/releases/287918.php?tw

Learning about Disability

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I’m taking a disability studies class this term as part of my social work program. I study part-time, online. I thought I would post some of my reflections on reading articles for the class. People living with FM and CFS/ME don’t always think of themselves as ‘disabled’, but the way the world is organized and the way these conditions affect our bodies certainly mean we do live with disability.

Reflections on Eli Clare’s (2001) Stolen bodies, reclaimed bodies:

I found that this poetic article illuminated the physicality of the experience of living with a disability in a way that I had never encountered before. Weaving the author’s personal experiences along with disability theory was incredibly effective in making the central point of the article. Clare argues that the disability rights movement identifies the social and material conditions that oppress disabled people as the locus of change, rather than the individual ‘impairments’of the body. However, in so doing, the body and somatic experience often gets lost in progressive disability discourse (p. 360). Clare makes the point that our bodies are a key part of our identities, and mediate our engagement with the external world (p. 364).
I have never thought about the social model of disability in these terms before. It makes sense to me, though, both intellectually and viscerally. I identify as a person living with a disability, and one component of my experience is chronic pain. Chronic pain, from my perspective, never fit neatly with the assertion by the social model of disability that the only location of problem and change is society. My relationship with my body, the pain that I feel every day, is also a site of struggle, and a challenge in my life, alongside the social oppression that I face as a disabled person. Disability, then, for me, is about both a relationship with myself and the external world. This article provided me with the new ways understand the internal and external realities of disability. Clare connects one with the other, as part of the disability rights movement; “without our bodies, without the lived bodily experience of identity and oppression, we will not truly be able to reconfigure the world” (p. 364).

Clare, E. (2001). Stolen bodies, reclaimed bodies: Disability and queerness. Public Culture 13(3), 359-365

The benefits of managing oxidative stress in fibromyalgia syndrome – Igennus Healthcare Nutrition

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http://igennus.com/nutrition-blog/the-benefits-of-managing-oxidative-stress-in-fibromyalgia-syndrome/

The role of oxidative stress in fibromyalgia and CFS is important to understand if you live with either condition. It points to the importance of antioxidants (especially through the diet) and other measures to counteract free radical damage. Think organic food, which has higher concentrations of antioxidants, Omega-3, and green smoothies everyday!

Vulva Monologues: The Beginning

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Or, Barney the Vulvasaur

It’s 2010, and I’ve just started a teaching job in South Korea with my boyfriend. Sex has been painful on occasion, and I think I might have a chronic yeast infection or something. I have spent several hours looking up gynecologists who speak English in the nearby city of Busan. I contact one hospital and a nurse calls me back to set up an appointment. We take a bewildering trip into the shopping heart of Busan (think four stories of flashing neon lights on every block). It is a large hospital and it turns out that we have a nurse translator rather than a gynecologist who speaks English. She takes me into an examining room, where I lie down on the examining table, put my feet in the stirrups and spread my legs. (You know the drill). The strange part, for me, is that a curtain is drawn across my mid-section so that I cannot see the gynecologist examining me. The nurse explains that this is because Korean women are very shy about anyone looking at them ‘down there’. Well, I usually stare at the ceiling anyway, so it doesn’t make much of a difference. After a few minutes of probing, the gynecologist explains (through the nurse) that she cannot determine if anything is wrong. The reason she gives is that, because of her unfamiliarity with caucasian women’s vulvas (as opposed to Korean women’s), she cannot determine if the pink colour is normal or inflamed. Awesome. She takes some swabs anyway, and we take the bewildering trip home again. A couple of days later, they call me to say that the Dr. thinks I might have an STD called Trichomoniasis (even though the swab was negative, but this sometimes happens they say). Horrified, I rush to the pharmacy to fill my prescription, but when I get home to look it up, the symptoms look nothing like what I am experiencing, and it seems unlikely I could have contracted an STD anyway.

Back to the drawing board.

I find another gynecologist at a smaller hospital in Busan who does speak English. She is much more thorough and appears to think I have vulvar inflammation but no infection. She wonders if I might be allergic to my boyfriend’s semen or to something else. I am prescribed an antihistamine, and advised to take baths with propolis (a resin collected by honeybees for hives). I look it up and it seems to have some potential use as an anti-inflammatory and antioxidant. Unfortunately, I have no bathtub. Instead,  I have a shower-head in my bathroom. Not a shower stall, mind you. A shower-head coming out of one wall of my bathroom, beside the toilet and sink. One day we walk by a hardware type store and see a large, round, plastic bucket (maybe two and half feet in diameter). We buy it, take it home, wash it five times in scalding water, and I begin my daily routine of squatting in my bucket for about ten minutes with my bee resin. Upon visiting a local market, I realize these buckets are used to hold eels for purchase (to eat). I wash my bucket another five times.

However, my random pain with sex does not appear to be abating. I do more research and find an all-English gynecologist clinic in Seoul, catering to expatriates. We have been planning to visit this metropolis anyway, so I book an appointment. If privacy was the main concern in Busan, this is an all-exposure experience. During the exam, the doctor uses a camera and shows me my vulva, vagina and cervix on a tv! I’m a little overwhelmed. She swabs me for everything under the sun, and I am told to wait. I get a little tutorial on the menstrual cycle and how fertility works (memories of grade six puberty class come flooding back). I wait some more. I go back in and she explains that she will prescribe an immunomodulator cream, a new antihistamine, an anti-inflammatory, and anti-fungal that I should come back in a couple of months. For good measure, she swabs me with a dye called gentian violet. This is a traditional treatment for yeast infections, but for my vulva, it is the beginning of the end of normalcy. From now on, I will never have pain free sex. The pain is so much worse – it feels like acid has been poured on my vulvar vestibule every time we attempt penetration. Oh yeah, and my vulva is now purple for two weeks. Like Barney, the vulvosaur. The immunomodulator cream is horrendously painful, so I never use it again. I keep up with the other pills because it sort of makes sense that I might have some kind of reaction to something or some kind of low grade, symptomless infection.

I try to start trying to take control of the situation by following all that useless advice online that you get. I throw out all my underwear and buy all new, white, cotton-only underwear. I read about how it might be a low-grade yeast infection and that you can transmit it to yourself over and over again through your underwear unless you wash it with boiling water and dry it on high heat. I start boiling my underwear in a pot of water, and hanging it out to dry. I  don’t have a dryer in this country, so I start ironing it afterwards. I read about how you should only sleep in nightgowns, and that you should blowdry yourself down there on low heat after showers so that it is never damp. I do that too. I make sure that I shampoo and condition in a way so that none of it can touch my vulva. If I had allergic dermatitis or chronic yeast, some of this stuff might have helped. But that’s not what I have, and none of it is working.

At this point I am really starting to feel frantic. My fiance and I cannot be intimate at all. We keep trying after I begin one of these new treatments or practices, it doesn’t work, I pull away, I start crying, I wonder what is wrong with me, I feel like less of a woman, he feels guilty for hurting me, he feels powerless to help…What am I going to do?

To be continued…

The Vulva Monologues

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It’s time to put this outrageous story of one vulva’s experience with vulvodynia into words. I started my blog over a year ago, but I have found it easier to talk about my fibromyalgia and chronic pain instead of the ‘pelvic pain’ – the pain in my vulva and vagina. Putting it ‘out there’ is scary because it is such a private part (yes, pun intended) of my life. But that’s exactly why people like me need to write about it. There is so much stigma and shame, along with ignorance and misinformation. Vulvodynia means chronic pain of the vulva, which is the outer part of women’s genitals, and includes the outer labia, inner labia, vestibule (opening to the vagina), clitoris, and urethra. The vulvar pain does not come from an infection, allergic reaction, skin condition or other identifiable cause, and there is often no visible change in appearance to the vulva. Vulvodynia can be generalized (cause pain everywhere in the vulva) or localized (to a specific area of the vulva, often the vestibule, which is the vaginal opening). The pain can be constant or intermittent. One specific sub-group of women have vestibulodynia (pain of the vestibule), which is usually felt when pressure is applied to the area, such as when trying to have sex, when sitting down or wearing tight pants. How does it feel? Raw, burning, irritated, throbbing, aching, tingling… there are many different sensations. The condition is common and affects up to one in four women at some point in their lives, according to the National Vulvodynia Association. For some women the condition spontaneously resolves, but many other women have to manage it throughout their lives. I fit into this second group, and this new blog section will describe the five year process of coming to terms with my vulvodynia and the ongoing process of learning to manage it.

Great Sources of Information:

When Sex Hurts: A Woman’s Guide to Banishing Sexual Pain by Dr. Andrew Goldstein et. al.

The Vulvodynia Survival Guide by Howard Glazer

National Vulvodynia Association

Tramadol associated with increased risk of hospitalization for hypoglycemia – Medical News Today

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Wow… Maybe this explains my low blood sugar crashes! Good thing to know about if you are on tramadol (otherwise I find it the most effective pain reliever).
http://www.medicalnewstoday.com/releases/286590.php?tw

Exercise DVDs for FM You Can Actually Do!

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If you have fibromyalgia, you may be tired of reading all about how exercise will improve your quality of life.

There are zillions of articles on the internet citing studies that demonstrate how moderate exercise reduces pain and improves other FM symptoms. I don’t know about you, but the last time I went to try a yoga class, I spent the next three days in bed from a major flare up. Or the last time I jogged to catch a bus, walked in the snow, or did anything else remotely aerobic – it didn’t turn out so well.

So how exactly are we supposed to get this exercise, in a way that improves our FM, instead of triggering it? Previously I wrote about a tai chi dvd for arthritis with Dr. Lam, which is very gentle, yet therapeutic. However, sometimes you need several options to entice you into a work-out! Recently, I came across an excellent resource for FM exercise DVDS at www.myalgia.com. They are produced by the Fibromyalgia Information Foundation, a non-profit run by doctors and researchers at the Oregon Health and Science University. This means that all the exercise routines are designed by reputable instructors and approved by FM medical specialists from the University.

There are 4 DVDs in total: Yoga and Pilates, Stretching and Relaxation, Strength and Balance, and Aerobic Exercises. Here is the best part – along with the instructor, each video includes three FM patients demonstrating the movements. Each patient follows a program at a different level of difficulty, with modifications for more severely affected patients, to ‘medium’, to ‘advanced’ movements. I have tried the Yoga and Pilates DVD and really enjoyed it. 1 can pick which ‘level’ to do based on how I feel. Over time, I can feel myself improving and following the more ‘advanced’ level program more often. I hope to move up to the strength DVD. I previewed it – it is older than the Yoga DVD and has awesomely cheesy music! If you are looking for an at-home exercise routine (maybe to fulfill your New Year’s Resolution for 2015), I highly recommend these DVDS. They are reasonably priced and thoughtfully produced for FM patients.

* Please note this is an independent review, and I have no affiliation with the organization.