Helen Henderson

A bright light in the disability community has left us. Well maybe she hasn’t really left us.

I didn’t know Helen well, but I did have the honour of working with her a little bit. One day, she was encouraging the work I was doing with the Toronto Disability Pride March, and I couldn’t quite work up the nerve to tell her how much of an influence she was in my life. I thought I would find a better time. She was someone I looked up to, and though she was a humble person, I felt humbled in her presence.

Her writing taught me that people wanted true stories of disabled people at a time when it seemed like those things were invisible to the wider world. Her ability to cross that border, and show non-disabled people the truths of our lives was uniquely powerful.

Thank you Helen for sharing your cleverness, your quiet strength, and your warm encouragement. There are eyes more open, and lives made brighter, because you dared to share your world with us.

The following is a You Tube video of Helen at TedxRyerson:

The Grocery Shopping episode

My attendant mentioned that she hates grocery shopping with me because people stare at her with pity. I can’t say I blame her, it happens every week. What I did find strange was that she’s been working with me for a year, and only mentions this today. Maybe because when I backed out of the elevator some guy thought it would be funny to pretend like I ran over his foot. Yes, people do that. It’s on the scale of things that makes me wish I was bold enough to actually run over their foot and sit there for a few minutes. You start to wonder if you could’ve done things differently. I’ve seriously considered wearing make-up to the grocery store, or at least a “Piss on Pity” shirt.

We shouldn’t need such armour just to avoid a side of contempt with our cornflakes at the grocery store.

There are people I’ve known my entire life who think I’m somehow exempt from things like this, because they couldn’t imagine it. They dismiss it as unintentional or ignorance, but its objectification. Treating people like less than human beings. Small on their own, but like a steady leak that eventually leads to rot.

People wonder how big acts of oppression, discrimination and violence occur. It’s through the build-up of those small things, day after day it wears on your soul, your energy to act, and how your people are seen over time. Before long the raised voices become quietly archived history.

Disabled people are under constant threat of erasure. Our experiences undermined, our stories told through someone else. I heard today that in response to the assisted suicide decision, there’s talk of developing a list of disabled people. I think they could use a history refresher. Society in general has not been kind to those who get asked to register their status. People who’ve never had to worry about these things have a remarkable ability to ignore the lessons of the past.

I was at the Art Gallery of Ontario today with a friend. There was a section that was about art and politics, and it said that focusing on the positive leads to greater change. It got me thinking that maybe people need to hear more about who disabled people really are. There are many disabled people doing great things, and most of us are pretty quiet about it. I think it’s time we got louder, but more importantly, it’s time for the non-disabled to start listening.

Some thoughts on Disability, Privacy, and Privilege

Privacy has a bit of a different meaning for me than most people. I hire people to help me shower and help me dress. This is not something I am ashamed of, or that makes me less than anybody else. I’m ok with it, partly because I’ve always had to live with it, but mostly because I get to choose who I am vulnerable with, this has not always been the case.

As I grew up with my disability this vulnerability was most often not within my control, and that was always difficult, always. When I was in elementary school more people had access to my body and its functions than I can count. I remember reading a poem about a butterfly pinned up in a shadowbox, and people were looking at it, checking it for flaws, and realizing how much I felt like that butterfly. I was told this was normal, I’m sure my parents were told this was normal, but it never felt normal. I was told it made things easier. I wonder if any of those professionals thought about how all of that public access to my body was going to be viewed by the teenaged me as she tried to claim her body as her own. How do you claim sacred space after years of no one asking your permission?

When I got older and on social assistance, privacy became even less tangible to me. To go on social assistance you sign over access to your bank records and your medical information, so you can maybe have enough money to cover rent and a little bit of food. Again I was supposed to be ok with this, because I have a disability, and there was nothing I could do about this for a long time, because I have medical costs, and it took ten years to find a job that someone hire me for. I signed over my life, and promised to live alone, so I could eat; we all do. I’m now working, and have for a few years, but it’s hard to shake that feeling of someone watching over your shoulder.

Many disabled men and women have experiences similar to these, and the chilling effect these experiences have is immense. We don’t need whistleblowers to tell us how the loss of privacy silences our voices. The worst part is that many of us who can speak out distance ourselves from those who are more marginalized, and we forget what it’s like. Then we wonder why we have leaders who fight for tax breaks and building codes while people sign over their privacy so they can eat and shower.

Today on the sidewalk there was a man in a wheelchair like mine singing for change. I gave him a toonie, what I wanted to give was my solidarity. If my life had different circumstances that could be me, and I can’t forget that. If we don’t hold each other up we will all be pushed down when they tell us what we disabled people should expect.

“…If we do not define ourselves for ourselves, we will be defined by others – and for their use and to our detriment.”
~ Audre Lorde

New Toll-Free Number for Reporting AODA Violations

We need to send a clear message on the importance of AODA Enforcement by using this toll-free number when we see a violation of the Act. To report an AODA violation to the Government, call 1-866-515-2025. TTY: 1-800-268-7095

The Accessibility for Ontarians with Disabilities Act, 2005 (AODA) became law on June 13, 2005. Under this landmark legislation, the government of Ontario has developed mandatory accessibility standards that identifies, removes, and prevents barriers for people with disabilities.The AODA applies to all levels of government, nonprofits, and private sector businesses across Ontario who have one or more staff.

Ontario plans to conduct fewer compliance inspections this year, even though more than 60 per cent of businesses are still in violation of the province’s landmark accessibility legislation, according to new government data. We need to send a clear message on the importance of AODA Enforcement by using this toll-free number when we see a violation of the Act.

The following is from the AODA Alliance:

The Ontario Government has  established a toll-free phone number for the public to report violations of the AODA. This is an interim victory for us, on the long road of our ongoing effort to get the Government to keep its promise to effectively enforce the AODA.

Use this line if you encounter an organization in Ontario which you believe is violating the AODA.

To report an AODA violation to the Government, call 1-866-515-2025.

TTY: 1-800-268-7095

Take the steps we describe here, and then tell the Government operator you reach the specifics of the AODA violation, including what happened and when, and the name of the organization that violated the AODA.

When you call this number, it is not immediately clear from the Government’s audio announcement that this is the number to call to report AODA violations to the Government. Stick with it!

To reach a human being in order to report a violation of the AODA, first press 1 for English or 2 for French. The automated phone system will then offer to press 1 if you are an individual, or 2 for a business. Press 1, if you want to report an AODA violation.

You will then hear a longer audio announcement. At any time during that audio announcement, just press 0, to reach an operator. Tell the operator you want to report a violation of the Accessibility for Ontarians with Disabilities Act.

The first operator you reach does not take that information down from you.
Instead, that first operator is supposed to then connect you with a second operator, one who works at the Accessibility Directorate of Ontario, located at the Economic Development Ministry. That second operator is the person to whom you can report an AODA violation.

We encourage you to:

* Call this toll-free number if you know of a situation where an obligated organization is violating the AODA, or any accessibility standards under it.

* Ask the Ontario Government operator you reach what the Government will do with the information you give them. Ask them to be sure that the obligated organization is notified that you have contacted the Government with this report of an AODA violation.

* It is not necessary to yourself first notify the obligated organization of your concern that it has violated the AODA. However, it is quite worthwhile to first let that obligated organization know about the accessibility problem. When you call the Government’s toll-free number, you can include in your report any information on your efforts to get the obligated organization to fix the problem, and the response you received from the obligated organization.

* Encourage your friends and family members to also use this toll-free number to report violations of the AODA.

* Widely publicize the availability of this toll-free number. Include it in newsletters, letters to the editor, Facebook pages, etc.

Let us know what happens when you call this number. You can give us your feedback on your experience by emailing us at aodafeedback[at]gmail[dot]com

Why Disabled Canadians should care about Bill C – 51

Today I was asked why disabled people should be concerned about bill C-51. This was my response :

I’m not sure I’m understanding your question, are you saying that the serious potential for the violation of human rights is not a concern of the disability community? “Demonstrating without an official permit or protesting despite a court order, activities that are commonly carried out by Indigenous communities, environmental groups, the labour movement and many others, could be targeted by the new CSIS powers, even though they are fully protected under the Charter of Rights and international law.
These new powers to reduce security threats by CSIS agents are not defined. The only exclusions are acts that would lead to death, bodily harm, perversion of justice or violation of sexual integrity. Other internationally guaranteed human rights such as liberty, privacy and freedom of expression are not protected from these new CSIS powers.
CSIS agents can also seek authorization from Federal Court Judges for warrants to take action that violates the Canadian Charter of Rights and Freedoms and permits them to act in disregard of local law in the countries where they are operating.” (Amnesty International)

Many disabled people are concerned about this bill, as it impacts our ability to support our rights, and it impacts the rights of those who show solidarity with us.

Say no to Bill C-51! Find a local rally, sign a petition, and contact your MP.

More ways to get involved

Ableism, not Assisted Suicide, is what we need to work against

The Supreme Court decision on assisted suicide brings up a lot of questions for Canadian disability activists, and some fear, but I think it’s worth looking at why we still have this fear.

I’d like to position myself in this conversation by noting a few things. The first is to acknowledge that within the disability community I hold a fair bit of privilege. As a white, well-educated, employed disabled activist I am aware that other disabled people face greater barriers and oppression and will likely have more to fear from this decision than I do, and I’m not saying that fear is misplaced. I am also a person who has attempted suicide in the past, and I have the privilege to be able to say that without shame. I was young and fighting many years of unnamed depression and ableism that I have since been able to climb out from. I have also known people for whom assisted suicide may have been a compassionate end to their suffering if that choice were possible at the time.

There are many disabled people who understandably feel that they’ve been made more vulnerable by this decision. It brings up many questions about what constitutes a valuable life. What does that mean for people who require assistance with daily activities of life? Does it impact the value of a disabled person’s life in the context of a capitalist society where the ability to produce, make and spend money, has become a mark of human value? What does it mean for mad people and psych survivors whose decisions to end their lives are often controlled by the medical community?

The reason I chose to try to end my life over a decade ago is a complicated one, but ableism, and my understanding of myself within society played a big role. This is a struggle that faces many disabled people still. The idea that we are burdens, and second-class citizen where other “experts” make choices and decisions about our lives is still as ever-present as it was then. The idea that needing help, and being anything less than 100% self-sufficient and independent makes us burdens; that we must all “overcome our disabilities” is holding us back. Yet this is the image we see presented to us not just in the media, but by the organization and presentation of some of our most cherished disability organizations. Yes, there are disability organizations in Canada promoting the oppression of other disabled people through their own internalized ableism. Their inability to recognize the privilege of their membership has silenced those who are more oppressed.

So what do we do about it? We can start with opening our doors and minds to a shift in the disability movement; one with zero tolerance for oppression within its ranks. One where working disabled people work towards becoming allies to people on social assistance, where disabled athletes can talk openly about needing supports. Most importantly we evolve our organizing to a level where disabled people are each experts in the disability experience, and all of us are equally valuable. We can no longer tolerate a movement or organizational community that positions non-disabled people as our champions and runs rampant with classism, racism, sexism, ableism, or any other form of discrimination.

The decision made by the Supreme Court of Canada on assisted suicide is about choice, and we too have a choice. We can choose to allow this decision to divide us into “achievers” and “victims”; or we can reject that ableism. We can use our collective power as disabled people to define lives worth living in terms that include all disabled people. This does not have to conflict with the right of other people who would make that choice. We have no reason to fear assisted suicide if we can overcome ableism within society and within ourselves. We have that choice, let’s choose to start now.