National AccessAbility Week 2019: "Access to care" by Bára Hladík
During National AccessAbility week 2019, we are organizing a blogathon:daily blogs/vlogs on topics of accessibility.
Check out this blog by Bára Hladík on physical, financial and bureaucratic inaccessibility of medical spaces.
Bára Hladík is a queer disabled interdisciplinary artist, writer, and researcher born to Czechoslovak migrants in Ktunaxa Territory. She has performed and published her work across Canada and in the US and her book Behind the Curtain was recently published by Publication Studio. She is now based in Tiohtiá:ke, Montréal and is part of the communications team at DAWN Canada.
Access to care
by Bára Hladík
Is care accessible? And for whom?Accessing medical spaces is integral to our well-being and survival as disabled people, yet we are often confronted with barriers to access in the very spaces that are built for us.
I have an appointment with a rheumatologist every three months or more. On my last visit to Montreal General Hospital, I got off the 144 bus and craned my neck up to see the impressive yet imposing hospital tower above me. I wondered why a hospital was built near the top of the mountain, up steep hills from every direction. As I approached the entrance, I realized that in front of me were three flights of stairs to get to the front doors of the hospital. I was not the only one getting off at this stop using a cane. I saw three other cane-users attempting the arduous climb of 47-plus stairs, pausing every four stairs or so to catch a breath. One of the women cane-users, who appeared to be well into her seventy, nearly collapse into a chair at the main entrance, huffing and puffing to catch her breath. And people who arrive by cab or car, either drive up to the entrance or pay to park in the car lot, which is convenient and accessible.
It is not uncommon for bus-users to struggle to get hospital appointments because bus stops are absurdly inaccessible. I have been to many hospitals where the bus stop is two blocks from the hospital entrance. The difference of a couple blocks for someone with limited mobility or significant pain can mean saving us pain, exhaustion, recuperation, and time.
Making it to the door is only the beginning of the journey. Usually, medical and governmental spaces are complex labyrinths. For those of us who are disabled, unable to afford private transportation, and/or needing to be at various appointments in various locations at specific times, it is difficult to navigate and arrive in spaces that are intended to support our health but often proliferate our symptoms.
On top of being physically inaccessible, medical spaces can also be bureaucratically impervious.
At 18, I became chronically ill, but I was not diagnosed with Ankylosing Spondylitis, a degenerative form of arthritis, and several other comorbidities, until I was 25. Why? I spent much of those 7 years attempting to describe what I was experiencing to various doctors. I said things like I am losing my ability to walk, I am in severe pain everyday. I was met with responses from medical professionals like: a healthy young lady visited me today, try these antidepressants, exercise regularly, and come see me in a year. I was denied adequate testing for over five years because my experience wasn’t taken seriously. Almost immediately after transferring to a new specialist, I received proper testing and was swiftly diagnosed.
What did this diagnosis change? Access.
Diagnosis in hand, I soon obtained paperwork for disability benefits, a social worker, an occupational therapist, medication, education, and validation. My experience in doctor-patient interactions went from skepticism to this is a very serious disease.
Pre-diagnosis, I had no information, care, or access. I was ineligible for disability income assistance, and I did not have access to medication or treatment, which has since significantly increased my ability to function. I was also unable to communicate what was happening to me to those around me as I did not have access to the language attributed to my body. The underdiagnosis of women’s pain is unfortunately a common medical practice.
Bureaucratic inaccessibility runs deep, often limiting disabled bodies from receiving adequate care and support or bettering our situation. Yet, paperwork often dictates our access, replacing conversations with professionals that would more effectively and efficiently address our needs.
When I moved to Quebec from British Columbia, I was eager to improve my situation by moving somewhere with more opportunities, but was very anxious about transferring my doctor, income assistance, and medical coverage. And for good reason, it turns out. I was told that it would take about three months to transfer everything. It took much longer, leaving me in a precarious situation. I eventually found a nurse who worked with a doctor, a specialist, and completed the proper paperwork for basic health coverage. But when it came to my medication funding from the Quebec government, I was denied on the basis that I “hadn’t improved enough” on the 1-to-10 pain scale document while on the medication that I have been taking for nearly two years. This medication took me from being often housebound to being able to work part-time. If there had been a conversation between la Régie de l'Assurance Maladie du Québec and I, this would have been clear. Instead, I was told to fill out a single sheet of numbers with no guidance as to the implications of what I put on the document.
As a disabled person, your intimate life is under the gaze of three institutions: the medical institution, the government, and pharmaceutical companies. Navigating the bureaucracy, interrogations, appointments, economics, and symptoms as a disabled person is a full-time, invisible and unpaid job. Meanwhile, we are fighting for the right to not only live our lives but to flourish, and we are faced with assumptions that we are ‘lazy,’ passive, and do not ‘contribute to society.’
In order for something to be accessible, it must consider the intersections of our daily lives: the ways in which we navigate public spaces, the real, lived circumstances and intersections of our identities and disabilities, and the ways in which we are confronted with the bureaucracy of several complex institutions. Access must prioritize the multi-faceted reality of disabled people as individuals, who are likely already over-saturated with navigating the ins and outs of the complex systems that govern our lives.