Dear Mayor and Council,
I am writing to express my opposition to the Rezoning Application for 500-650 W 57th Ave (Pearson Dogwood) in its current form.
We need social housing, specifically individual private apartments, for all disabled people – with attendant care as required – integrated into the community.
Vancouver should follow best practice and the group home model for disabled people is not best practice and it most definitely is not world class.
Disabled people want and have a right to independence – not oversight.
Group homes, like other institutions, operate based on the convenience of those working in them. They have shift changes, designated rooms for ‘soiled laundry’ and medications – they are workplaces not homes.
Having your own bedroom with your own bathroom is great if you are 16 and living with your parents, it is not independent living for a disabled adult.
As a disabled woman who had, and likely will have again, complicated medical needs, I want my own apartment, not a mini-institution with better decor.
Thus, unlike many discussions about development in Vancouver, the issue here is not density it’s history.
Far too much of the history of disability is one of grave harm in the name of help. Institutions are a large part of why and that history and that harm continues to this day.
Most people would agree that in 2017 we should not be building institutions for disabled people. But perhaps what is less clearly understood and agreed upon is what is an institution?
For many people the word institution conjures up an image of a large building set back from the road, fronted by corporate landscaping and surrounded by a fence. There is visitor parking, staff parking but no resident parking. For reasons they can’t quite explain, it feels foreboding.
But is an institution just a matter of landscaping, parking and architecture or is it something more?
For me as a disabled woman, institution means passivity and powerlessness. It means safety and liability overrule and eliminate spontaneity, lazy, silly, risky and ‘probably going to regret it but sometimes it’s fun to live dangerously so what the heck’ moments of recklessness that lead to bursts of laughter when you look back on them and sometimes, if you’re lucky glimpses of the exhilaration of freedom.
Institution means paternalistic concern, infantilization and teams of people discussing you without you – or ‘involving’ you by talking over and explaining you to you.
Institution means hanging out with people who are paid to spend time with you, or who do so for free hoping it will favourably reflect on their application to medical school.
Their dream is to be a doctor.
They have dreams; you have a care plan.
Whatever else happens to my body, I will stop dreaming when I stop breathing and not one second before.
The one thing everyone agrees on is an institution is NOT is a home.
The question that has to be asked about this application is are we building homes or just smaller institutions?
Does an institution stop being an institution when we change its shape and size and call it a group home?
I think the insights of withasmoothroundstone.tumblr.com a disabled blogger are worth quoting here.
“Group homes are institutions. They’re just tiny ones with only a few people living there. Size and location doesn’t make an institution, power does…
Larger institutions aren’t necessarily worse than group homes. Sometimes group homes are worse…
I always tell people I can never count how long I was in institutions because it’s all a matter of definition…institutions aren’t about size…or shape of the building…but about power and who has it and who doesn’t.”
There is one other thing about institutions I wish Mayor and Council to understand. They erase the boundaries of you until you can’t tell the institution’s ideas from your own. The lesson you learn, sometimes subtly, sometimes directly, is you don’t know what is right for you, they do.
I am still unraveling the profound and unsettling effects of prolonged hospitalization.
The history policy-makers before you wrote became part of my history.
Your vote on this rezoning application will do the same for future generations of disabled people in Vancouver.
Fortunately there is another history you could decide to be part of. It is exciting, daring, and innovative and it changes lives and community for the better.
In 1962, a man named Ed Roberts was accepted into UC Berkeley and he and the 800-pound iron lung he slept in, moved onto campus. It was a wheel in a door he, as the father of the Independent Living movement, and many others since continued to push further open.
In the 1970’s cities like Toronto started mixing wheelchair adapted apartments with on site attendant care into their social housing buildings.
The impossible dreams of disabled heroes gave me freedom. I wheel in the path they laid.
Now, 55 years later, how can it be that we are talking about building group homes instead of apartments for disabled people in Vancouver?
Is this really the history we want to be writing in 2017?
I suspect I am not the first person to tell Mayor and Council that the decision you make could dramatically alter my life. However, in my case it is especially true.
I have a rare autoimmune disease that thinks it’s open mic night at the improv. Some people get better. Some people get worse. Some people die. Some people don’t. Some people have a ‘mild’ version – some don’t. I don’t.
On June 4, 2015 two doctors came into my room at VGH and explained that if, (as they predicted would be the case), my respiratory muscles continued to weaken; I would need a portable ventilator to assist my breathing.
Out loud I said “Okay.” In my head I said, “You got this. You’re good. You can handle it just as you have handled everything else.”
But what the doctor said next I could not, “Of course when that happens you can no longer live in the community.”
It took only a moment for me to reply, ‘I will not move into an institution.’
I could tell the doctor predicted this would be my answer and nodded acknowledgment (and, I think, agreement). Then he locked eyes with me and said “But I just need to make certain you understand that if you make that choice you will suffocate and die. It is your choice. But you will die.”
I told him I understood. But the truth is I didn’t then and I still don’t now.
I do not understand why my only choices are suffocate my body at home or suffocate my spirit in an institution.
Why would I not have the choice to live in my own apartment in the community with the supports I require provided as needed?
You have the ability to give me that choice. Give all disabled people, regardless of disability, the right to their own self-contained housing.
There is no reason why in 2017 Vancouver disabled people who require a ventilator or any other equipment or assistance, should not be able to have their own apartments in the community.
That is what you are voting on here tonight.
Reject the application in its current form and demand they do better for the current and future disabled citizens of Vancouver.
Tonight you write history. What is the history you will write?
Will you vote to give me the ability to live with dignity?
The young woman pictured in this photo has a portable ventilator, similar if not the same as the one that in 2017 Vancouver would make me ineligible to live in the community.
Please watch this submission in opposition to the rezoning by Paul Caune.