Michael Gottheil, Executive Chair - Social Justice Tribunals Ontario
Toronto, Ontario, December 2014
Many thanks to JOIN and the OPS Diversity Office for inviting me today. I want to commend JOIN for this, the 11th Annual Conference focused on employment, and inclusion of persons with disability in the workforce.
I feel incredibly honoured to have been asked to deliver the lunchtime keynote address. And honoured and humbled to be listed as a dignitary on the program, alongside Ministers Duguid and Orazietti, and the Honourable Jean Augustine. This is the first time in my life I have ever been referred to as a dignitary. In fact, if you Google my name, you will see me referred to in less than dignified ways. As “incompetent”, as an “unelected bureaucrat with draconian powers”, and my favorite – “Michael Gottheil, Tribunal Chair or Mafia Don?” At least that last one was posed as a question, rather than a definitive statement of fact.
All of which to say is that, after so many years, my fortunes appear to be rising.
When I was asked to speak at this wonderful event, and told of this year’s theme, I struggled to come up with what I might talk about. As a lawyer and human rights Chair (and Mafia Don), I thought I could talk about the law, what it requires and the penalties for non-compliance. But then I looked at the programme and saw there was plenty of that. I thought about speaking about the value of diversity and inclusion, and how making our workplaces and services barrier-free makes economic sense, strengthens our communities, and fundamentally enriches our individual and collective lives. But again, I realized I’d be preaching to the converted. This conference, and this organization, is about people who know these things, are committed to these values, and are leaders and drivers of these principles.
So I decided to dig a little deeper, to find some issues that I myself have been thinking about lately, as a lawyer, a person with a disability, and someone who is committed, like everyone in this room, to a more inclusive, just and richer society. And I came up with the following title:
I know you’re thinking this sounds pretty heavy for a lunchtime address. It is. And that’s okay. We’re here today to learn and explore. So let’s say we make this a working lunch, instead of a free lunch.
Before I start, let me briefly explain why I came up with this title, so you know where I’m going. First, “Reflections on the Complexity of Disability.” If you are writing a paper, or giving a presentation, use the word “reflections” in the title. It’s a wonderful word. It suggests you are going to present some profound and meaningful ideas, yet sets a really low bar for coherence and intelligibility. At the end of the paper or presentation, if your audience is left scratching their heads about what it is you were trying to say – no problem, it was just a bunch of reflections. It wasn’t meant to make sense.
“Complexity of Disability” – this is in fact profound, and true. Disability, the reality and the concept, can be a complex thing for persons with disabilities and persons who work with people with disabilities, for family, friends and total strangers. As we move towards removing barriers, building a more diverse and inclusive society, we need to realize that the physical stuff is just part of the journey. The attitudinal barriers, the perceptions and self-perceptions also need to be addressed. How we relate to one another, and how we see ourselves can be at times even more challenging.
Then we come to “Conundrums, Enigmas and Dilemmas”. I love those words. Does anyone even know what the dictionary definitions of those words are? You don’t need to. Conundrums and enigmas – those words exude their meaning just from the way they sound. But the important thing to remember, is that while they identify tough, challenging, puzzling feelings and issues, they aren’t necessarily meant to be solved or even reconciled. They are meant to be acknowledged, recognized, discussed and confronted.
So let me touch on three of these perplexities:
This is about what disability is, how it is perceived in society, and for persons with disabilities, how we see ourselves, identify ourselves.
This is not a new conundrum. We’ve all heard the discussions about this conundrum over the years. Do we identify as persons with disabilities, or persons who are differently abled? Is disability a medical condition, or a social construct? Is “special needs” an appropriate label or a demeaning one?
And what is the ultimate goal we are striving for? Do we want to be the same, with our disabilities practically irrelevant to how we go about the world, or are our disabilities an integral part of who we are, and we want that to be recognized?
There are no easy answers to these questions, and perhaps ultimately, no answers at all. But they are nonetheless important questions, because they affect how we relate to one another - as people with disabilities, people without disabilities, people who don’t yet have disabilities, and people who do, but don’t see themselves as such.
For myself, I have struggled with these questions. In my life and career, I don’t want to be defined by my disability, yet I define myself, at least in part as a person with a disability, and in a positive way. Let me explain. I have RP, a degenerative retina disease. Along with AMD, great strides have been made in research to treat and cure retinal disease. People will sometimes call or email me with an article about the latest treatment. I ask myself, would I want to be cured. My disability is a fundamental part of who I am. How do I know if I would be better off, had I not been a person with a disability. I don’t, and with all the struggles and disappointments, I cherish the perspectives and insights I have developed.
People with disabilities are often seen as inspiration for others. Is this valid? Is this positive, or is it patronizing and demeaning? I don’t know.
A couple of years ago I was walking through Pearson airport, tapping my cane, heading for the exit to grab a taxi and home. As I passed a gentleman, he called out “God love ya’. I can’t motor along that fast myself.” We exchanged a few pleasantries, and we each went on our separate ways. I always thought positively of that experience, until a few months ago when I heard an interview with Erik Weihenmayer, the blind adventurer and mountain climber. You may have heard of him, he is the first and only blind person to have scaled the seven summits – the highest peaks on each of the seven continents, including Mount Everest. He was asked what he thought of people with disabilities being seen as an inspiration, and in particular the term “Inspiration Porn”, which was coined by Australian disability rights activist and author Stella Young. He said “What I try to do is promote the message that we are all in the same boat, we all have challenges. We all have to figure out ways of breaking through them, and finding purpose in our lives.”
Sounds good, but the interview started me thinking. I listened to Stella Young’s TED talk on You Tube, and read some of the divergent voices that have followed that talk. She came up with the term “inspiration porn” in response to a growing practice on social media which posts pictures of people with disabilities with inspirational captions like “The only disability is a bad attitude” or “Your excuse is in-valid” a play on the word invalid. The point of these posts is to inspire people without disabilities. The message – if that person can get through everyday life, what’s your excuse. The problem, as Stella Young says, is what if you are that person?
The objectification of people with disabilities, as poster kids for inspirational messages is problematic. It makes assumptions about the capabilities and potential of persons with disabilities. And it sets low expectations of what people with disabilities can achieve. What message does it send to, for example a prospective employer, when what ranks as a notable achievement is that I can get from the airport gate to the taxi stand, all by myself.
Stella Young also talks about an experience growing up, when a neighbour came up to her mother and said that she wanted to nominate Stella for a Community Recognition Award. Her mother’s response was, that’s very kind, but she really hasn’t achieved anything of note. She’s just a regular kid.
Still, it is tough getting through the day as a person with a disability, particularly given the barriers we face. It’s nice for that to be acknowledged, and if that inspires people, so much the better. Ultimately, perhaps it’s not inspiration that people with disabilities can give, but a window into breaking through barriers, ingenuity, determination and collaboration. But, as Stella Young says, wait ‘til we actually accomplish something.
This is a tough one. It is multi-dimensional. Essentially it is this: as a personal with a disability, when you confront a barrier, what do you do? Do you say something, or ignore it. Do you work around it or demand that it is made right?
Do you have a human rights complaint?
If you say something, how do you do that? Politely? Do you show your frustration and fatigue, and yes, sometimes anger? Do you consider the impact your actions will have on others? As people with disabilities, this is a constant dilemma – if we say something we know it will likely embarrass the person who created the barrier, or provided the thing without recognizing the barrier and its effect. That other person is usually a perfectly nice human being – just unaware or forgetful.
As a person with a disability, you are always worried about making the non-disabled person feel bad, or uncomfortable, or embarrassed, or insensitive. I always feel like I have to manage my feelings and the other person’s feelings too.
And then of course, you may worry that you will become known as a troublemaker, or a pest, or not collaborative.
Or you might just be tired of having to deal with these barriers, day in and day out. Even with the best of intentions and efforts, we have not yet arrived.
Let me give an example of where these perplexing questions and emotional dilemmas have arisen.
The other day I received an email from the Ministry, attaching a set of PowerPoint slides. Ironically, the title of the slide deck was “Setting a Future Vision for the Justice System”. The slide deck was not accessible. So what went through my mind at that moment? Well, something I call “the six stages of confronting barriers”: anger, frustration, fatigue, astonishment, determination and action.
What’s interesting about these stages, is they aren’t mutually exclusive and aren’t linear. You can mix and match, and can experience them in any order, or all at once.
(Let me digress. The six stages of confronting barriers can be juxtaposed with the wonderfully exhilarating three stages of a barrier free and accessible experience: surprise, appreciation and contentment.)
So what happened? First I wondered whether this meant that the future of justice did not include people with disabilities. Then I thought, after 10 years of working in the OPS, why is this happening? Did I do something wrong? Did I offend the powers that be? Should I offend the powers that be?
I thought what should I do - should I flip it to my assistant so she could convert it to an accessible format? Should I send it back to the Ministry and ask for an accessible version, with an explanation of how frustrating and disappointed I felt, receiving this after working 10 years? I chose the latter, but not without some trepidation of course. Because calling them out on their mistake would, I knew, make some people feel badly, embarrassed. And that’s a conundrum, because people with disabilities are supposed to be polite and respectful. If we aren’t we might not get hired, or might get fired for being unprofessional, or problem-causers. In other words, we are supposed to manage our feelings, and yours. Inspire that!
In the end, something good came out of that experience, or at least so far – my reappointment isn’t up for another 18 months.
I received an accessible copy, and really well done – not just a text version, but with descriptions of the graphics. Really impressive, and one of the better accessible documents I have ever seen.
So where does this leave us? More importantly, where does it take us? What can we take from these conundrums, enigmas and dilemmas that will help move us forward towards a barrier free, inclusive society?
First, acknowledge and accept that disability is complex. F. Scott Fitzgerald famously said that the mark of a superior intellect is the ability to hold two conflicting thoughts in one’s head at the same time, without going mad. There are no easy answers, and as I said earlier, sometimes, no answers at all. People are complex creatures. Social interaction is complex. Disability is a fundamental part of both.
Second, we are on a journey, but it’s not linear and it won’t be complete by 2025. Achieving equality and inclusion won’t magically happen when all of the AODA standards have been developed and implemented. Years of entrenched attitudes, assumptions, perceptions and self-perceptions don’t vanish overnight. The AODA and the Code are necessary components to achieving an equitable, inclusive society, but not sufficient.
Third, the journey itself is enriching and worthwhile. One of my favorite insights is from Ursula Franklin, famed Canadian physicist: A truly just society is like a potluck dinner;
everyone brings something, everyone gets something. What a wonderful image. A place where everyone is welcome, is encouraged to contribute, and each contribution is celebrated. The
idea that our individual and collective experience is made richer because of the differences. Exploring our strengths and frailties, how we each break through barriers – now that’s