What’s your Handicap? Reflections on the Word and the Week

[Un essai écrit par Aimee Louw. Une traduction française est disponible dans le Collectif pour la Semaine Québécoise des Personnes Handicapées (SQPH) 2014 préparé par Marie-Eve Veilleux.]

I’m sitting on a terrasse, the wind blowing on my back, no cars to be found. I’m thinking to myself as I sip a suspiciously cheap beer that summer in Montreal is amazing. Festivals, celebrations of seemingly every possible culture and subculture; every type of music and type of person. We’re into la Semaine des personnes handicappe now.

I never considered myself disabled growing up. Never identified myself as a person with a disability.  Never did awareness-raising walks or fundraisers based on my medical diagnosis. Was never, to my knowledge, the subject of an official government-sponsored week of recognition or celebration.
Now I am.
And now I do identify as living with a disability.

Perhaps its because chronic pain is more of a fixture in my daily life. Perhaps its part of my growing up and a deepening sense of self. Or perhaps it’s something about living in Quebec.

I feel that I’ve been squeezed to a point where I either wear my disability like a badge with pride, or I get written on by the prejudicial words of our Quebec society.

Don’t get me wrong, I am proud. I love my body, my mind and my way of being in the world. I’m proud that I can get through tough moments in life, and that I am learning to be accepting of an ever-changing physical condition. I learn so much from my experiences of pain and self-care and all the frustration – and take-out on an almost maxed credit card – in between.

I am proud to see Accessibilize Montreal stickers on my walker, my front door, and on storefronts and metro entrances and RAPLIQ buttons on my jacket. I feel pride when I come together with my crip friends in demonstration, to play music, and to hang out, sharing laughs about stressed out STM drivers and how much faster our motorized devices go than ‘mere bipeds’.

But I’ll tell you the truth: when I think of myself privately, in my room with the door closed and away from the risk of misinterpretation, I am not a ‘crip’. I am not disabled. I do not have a handicap. I am  someone who writes and wonders who reads it; someone who lives with chronic pain and uncertainty; someone who is looking for answers to her early-diagnosed, later-forgotten by doctors muscle and joint condition; someone who is trying to get on the bus.

So what has brought me to the point where I wear my disability like a badge with pride?

Well, I have been discriminated against by a former boss, who ran out of money for her organization so turned to state-funded ‘integration’ funding for me, even though I had already been working there for months.

I have experienced a drastic diminishment of public transit options as my mobility has changed.

I’ve communicated with city and transit officials who placate me but do not listen to my claims of equal access to transit and commerce as human rights.

I have navigated hospital systems and buildings, where there were no accessible washrooms, but many discriminatory remarks to be found.

Mostly though, I have bolstered my crip identity while taking daily precautions. It is in the considerations I, like many people with disabilities, and to varying degrees, are forced to take because of barriers and prejudice in our daily lives that my ‘handicapped’ identity has solidified. Searching out which banks, buses, grocery stores, bars and conversations are accessible. A pressing example? Right now, I desperately have to relieve my bladder. I cannot do so in this bar. People without mobility aids can. This staircase contributes to segregated experiences of the city. While frustrating, I have a catalogue of the nearest washroom I can use in my mind.

All my crip friends do it: take precautions for the pervasive barriers they know they are going to face when going… anywhere.
We plan our trips, our habits, our schedules, our extra travel time, decline events or parties, all because of barriers in transit, personal care and infrastructure. It is not because we want to, its because we have to sandbag for potential storms we may encounter. And while today I found a pub I could access, in other instances many of my brothers and sisters, myself included, did not and could not find access to much more crucial things.

Handicap as a concept is much more at the forefront of my mind now. It has to be. But at its base, ‘handicap’ is an umbrella term not a description; a concept that, like the staircase leading to the washroom in this bar, is a way of distinguishing between the expected or ‘normal’ body or mind, and the unexpected or ‘abnormal’.

Reflecting on this, and the quickly warming drink in my hand, I consider stairs into buildings or condescending comments to be the handicaps, not my sore body parts or tired muscles. Because of constraints in our city, our province, I have been lead to identify as a person ‘living with a handicap’.

But handicap is a political identity for me, a tactic, a common voice for common barriers and discrimination faced.

So call me a party pooper, but I’m not that excited by a week for people with ‘handicaps’. I am not looking forward to a state-organized opportunity to fraternize with my brethren. I appreciate the intent: to increase inclusion of people with diverse bodily and neurological and emotional experiences into Quebec society. However, there’s something the Office for people with handicaps is forgetting or ignoring: every week is handicap week for us. Pretty much every day is. Not because we necessarily feel like being perceived as crips in the public, wearing that badge of pride and resistance, but because the barriers and discrimination we face daily are our handicaps.

Not only are we handicapped by the need to take precautions in daily activities, we are also handicapped by being in the position where we need to fight discrimination.

Imagine what we could be doing. What thoughts and artistry could capture our imaginations if we weren’t occupied by questions of, ‘can I get in there?’ or if we weren’t on hold with transport adapté.  Imagine the policy issues we could tackle, the leadership we could exhibit if we weren’t too busy communicating with city or STM officials, or filing complaints based on individual and group discrimination. Imagine the time we’d have if we weren’t on someone else’s schedule for administering basic needs as though they’re just another pill in the cabinet. Imagine the people we’d meet and the conversations we’d have if we weren’t on the phone with bars and cafes to ask exactly what the step looks like, how high, how wide? Imagine living in a society that values all work, where no one goes without dinner because they don’t have an income. Imagine the closure of the last program for integration into the workplace because there were no more discriminatory hiring practices, expectations of a certain type of productivity, or workplaces with a million stairs and a lack of accessible technology. Imagine one day going by without being confronted by a barrier in your daily life, without taking precautions for a missing ramp or event without sign language interpretation. Imagine the sensations we’d be experiencing if we weren’t caged in, waiting, waiting, preaching patience to ourselves and expecting none from our society.

Where and how I grew up there were practical solutions to things I struggled with like heavy doors at school and finding a musical instrument I could play. And there were loved ones and representatives of the state such as teachers and doctors around me who accustomed me to being treated with respect. Occasionally I would experience a prejudicial remark or inaccessible activity, I don’t want to romanticize my youth, but these were rare occurrences and not entrenched into the fabric of my daily experiences or fundamental to the culture and infrastructure of the society I was a part of.

I believe the day can come when we hammer in the last piece of plywood into the city’s last inaccessible spot, hear ourselves be referred to as ‘un handicapé’ for the last time, experience the last words of prejudice spoken by an employer, bus driver, educator or doctor, and we finally say, we’re moving on. I believe that day can come. But we need more. Let’s build on the momentum of celebrating diversity. Let’s support each other to act as empowered individuals and communities. Let’s engage in a diversity of tactics. Let’s rename the barriers we face in our daily lives ‘handicaps’ and remind our society to take responsibility for having erected them. And let’s spend our weeks breaking those barriers down, not reinforcing them. So that whether we associate or not with the term, ‘handicap’ its a choice, not a necessity.

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Aimee Louw is a member of Accessibilize Montreal (https://www.facebook.com/access4mtl?ref=hl)
And the founder of the Underwater City Project (http://underwatercityproject.tumblr.com/)
She is currently working on the Underwater City Zine I: a comparative look at accessibility across Canada’s cities.