It’s World Down Syndrome Day: Let’s Change The World, Let’s Start Right Here In Ottawa!

On the occasion of the tenth anniversary of World Down Syndrome Day, I can’t let the day pass me by without at least attempting to address the debacle that has been the media explosion about the pending closure of Ottawa’s largest sheltered workshop.

The sheltered workshop system was developed in the 1970s in response to the deinstitutionalization of people with intellectual (developmental) disabilities. The institutions would not completely close until 2009, but the Province of Ontario started  “closing the front door” and developing more community-based options.

Premier Wynne issued the apology on behalf of Ontario for the brutality suffered by residents of mass institutions for people with intellectual disabilities

This meant the Developmental Services system of non-profit agencies suddenly confronting the issue “What will these people do all day?” In the big facilities like Rideau Regional, there existed a parallel society with food and recreation built right into the walls (yes, just like a prison). So sheltered workshops were sort of like a kindly work release program, a way to provide people with something to do while those tasked with caring for their future could try to figure out “what else could be done with them.”

In the 1980s study after study, report after report, and endless anecdotal evidence clearly demonstrated that sheltered workshops were not supporting progress. They were simply a new form of segregation, achieving similar results as the big institutional settings. Individuals spent their days in the workshops and their nights in a group home, and they were not becoming a part of their community. They were simply passing through it.

In response, many agencies with the Developmental Services system started closing their workshops, simply because it was the right thing to do.

Bill Villemaire, 58, has been employed in a real job for real pay at the Sweet Clover grocery store for four years. Before that, Villemaire, who has an intellectual disability, worked for pennies an hour in the last sheltered workshop to close in Vermont. “Many of the people we place in jobs had been labeled as unemployable…we have seen people who have had all sorts of significant disabilities and they’re working. … It enriches their lives.”

The government of the day did not take much of a public position on these changes. Many family members of individuals in workshops wanted them to continue. They could not see any viable alternatives and had never been offered any other options, and the workshops gave them piece of mind that their loved ones were having certain fundamental needs met: shelter, food, and other people around. This was not aiming high, but they were understandably fearful of lows that could be much worse.

The understanding of sheltered workshops as a systemic form of human rights violation was an undercurrent over the next 20 years, and government became increasingly supportive of shifts towards community-based outcomes. More and more people with intellectual disabilities and their family members (and a growing advocacy network) were demanding a different lifestyle: full citizenship with the same opportunities and possibilities as other Canadians.

Not surprisingly, Developmental Services agencies that pursued these outcomes in partnership with their members and families achieved results. People previously labeled as incapable of living outside of staffed settings, earning a real wage through real work, or making friends (other than those they were congregated with in segregated programs) proved that these assumptions were false.

In Ontario this did not translate into policy that legislated sheltered workshops out of existence. Funding opportunities were shifted to more community-based outcomes, and public messaging emphasized real lives for real people (shifting away from a special people special places perspective) and so those agencies lagging behind on these advances were encouraged with carrots more than with sticks. This process, known as the “transformation of developmental services” has produced some shifts in language, some shifts in attitudes, and a limited shift in outcomes. The current climate is seeing the Government of Ontario taking a careful but increasingly direct approach to redirecting investment in segregation towards investment in person-centred, assets-based, community-focused outcomes.

Skipping ahead to 2015, some agencies have ignored the carrots, and have fought hard to maintain the status quo. While segregated programming has generally not provided for significant revenue growth, it has enabled the maintenance of existing staff positions and agency infrastructure.

Agencies unmoved by the burgeoning human rights movement and overwhelming evidence that other practices yield better results have utilized the same fear-based rationale employed in the 1980s. The major difference in 2015 is that 1980s alternatives to segregated programs were indeed speculative: there was little evidence of viable alternatives.

Today the evidence is all around us. People with labels of Down syndrome, autism, and other intellectual disabilities are leading lives as fully valued and fully contributing citizens. This is not to say that they do not need need and benefit from taxpayer-funded supports. It means that resources previously applied to segregation, when redirected to inclusion, deliver results such as people having their own apartments, paid jobs, and active lives in the community with recreation, education, and reciprocal relationships.

The story that broke in Ottawa was, unsurprisingly, very emotional and poorly understood by the media representatives that attempted to report on it. It’s a story that has been developing for almost 50 years, but, as one reporter confessed to me “I am new to this and trying to catch up.”

One particularly disturbing piece of misinformation that continues to be spread is the notion that paying sheltered workshop participants at the rate of $1 an hour is necessary in order to protect their disability pension. This is false, and I cannot believe that agency representatives did not know it to be false prior to communicating such a rationale to the media. And of course those reporting on the story should have at least done a Google on “Ontario Disability Support Program (ODSP) and employment income.”

This would have led them to easily identify the falsity of the argument. ODSP does not “cut people off” for working. ODSP actually WANTS people to work, and the system is designed for this. It is not perfect and there are various arguments about percentages and limits, but that is all pretty much a red herring in this situation. Were the 50 individuals in this sheltered workshop paid a real wage for their work (Ontario minimum currently $11.25) instead of the current $1.25 this is what would happen:

SHELTERED WORKSHOP INCOME

ODSP individual monthly amount: $1086
Full-time monthly earnings at $1/hour: $160
ODSP deductions: $0
Total income: $1246

MINIMUM WAGE INCOME

ODSP individual monthly amount: $1086
Full-time monthly earnings at $11.25/hour: $1800
ODSP deductions: $800
Total income: $2086

* in either case individuals would also be eligible for an additional $100 through the ODSP Work Related Benefit; I left this out of the equation as that benefit is changing in October and it may be $0 for one or both situations.

As you can see, these individuals would be pocketing an extra $840 a month, or $10,080 a year. I daresay that’s a tidy sum for anyone, let alone those facing financial and social barriers to a quality of life in the realm of what most Canadian citizens expect. (You can quibble with my numbers, but the totals are going to be very close to what I’ve indicated, no mater what sort of quibbling is involved).

So how is it that OCAPDD and the media continue to wrongly suggest that the $1 an hour wage is a benefit to these individuals as a result of their disability pensions? It simply isn’t true, so let’s focus on what is really taking place, and let’s see this situation as an opportunity to start doing what is right for these individuals.

We must not simply cut them off. They truly are the innocent victims of this situation. But we must also not use fear-based illogical arguments to justify as-is continuation of what is both a false economy and an artificial social construct. We must look at the available resources, combined with the stated willingness of the federal government to be involved in a solution, and support each of these individuals to move forward to real work for real wages. They have more than earned it!

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The #AutismSpeaks10 Hijack: Twitter Humanity Takes Over

It’s a complicated story, but I’m going to oversimplify because you should really get on Twitter (even if you don’t have an account) and check out #AutismSpeaks10 and experience this phenomenon for yourself.

The organization Autism Speaks (I’m not linking to them because wherever you try to land on their website they try to procure a donation with a page that you have to decline) was attempting to host online celebrations of its tenth anniversary, only to find the campaign hijacked mainly by individuals who identify as autistic (using#ActuallyAutistic) along with a number of neurodiversity allies like myself.

The world’s largest autism-branded organization by budget, Autism Speaks is known for a focus on autism as a type of disease to be prevented and eradicated, in stark contrast to the approach of many advocates who see autism as a part of humanity, and want to focus on barriers to inclusion rather than the direct or indirect messages that autism is a demon.

By this focus on “autism as part of humanity” I do not mean that this position suggests people who have autism cannot benefit from direct support. The point is that the focus should not be on medicalizing the individual or their autism as something to be cured. If this sounds like exaggeration of the Autism Speaks perspective, watch this video and then if you still feel that way, please let me know. I’ve got ready access to endless examples, including the experiences of people with autism who found Autism Speaks totally inaccessible to their voice or their needs.

Because of backlash this video was removed from the Autism Speaks channel, but of course, it lives on elsewhere. To put it mildly, the #AutismSpeaks10 campaign has backfired in colossal fashion, to the point where even “cute cat video” giant BuzzFeed News has reported on the story and is featuring the video above.

I find the whole scenario a glorious lesson in the powers of social media citizen engagement. We tend to romanticize or trivialize the importance of Twitter and social media from time to time, but it can be a legitimate vehicle for social change, whether it is exposing corrupt governments, or offering a voice to ordinary citizens who cannot otherwise compete with a multimillion marketing budget.

These types of protests are not uncommon in the political or corporate landscape, but for the non-profit community that might think themselves immune, think again. There is a new era of non-profit accountability that is not going to be about overhead or CEO salaries. It is going to be about mission, vision, and values with demands for transparency and accountability the likes of which we have never seen before. I’m glad.

A Matter Of Life And Death: Beyond The Headlines Of Physician-Assisted Suicide

I have watched friends and colleagues involved with disability advocacy struggle with their responses to the 6 February 2015 Supreme Court of Canada ruling on assisted suicide. Watching most media coverage of this dramatic event one was left wondering “What was all the fuss?” because it was presented mainly as a celebration, and listeners and viewers were left wondering why there was any opposition to begin with.

Amy Hasbrouk was one of the few voices of concern featured in mainstream media coverage of the Supreme Court decision

The frustration is growing and I doubt that I can contribute much to supporting an improved understanding of the debate, but I certainly have to try.

I have observed, I believe quite objectively, that public understanding of the controversy is based largely on media reports that have focused almost exclusively on individuals (past or present) suffering from painful and advancing terminal illnesses, who were/are competent and capable (and sometimes charismatic) speakers able to present well-reasoned and sympathetic arguments for their right to die on their own terms.

I honestly have not arrived at my own opinion on that particular narrow circumstance. But what I do know is that the Supreme Court ruling was not specific to what I’ve described above. It is much broader and much more complicated than most people understand.

The court has struck down the universal protections we had in place, and we are now likely to see a multitude of court challenges that will apply to many other types of situations – such as an individual with a disability who is unable to easily communicate their own wishes.

We need to challenge ourselves to go beyond the headlines in thinking about physician-assisted death

Trying to understand the “slippery slope” that people with disabilities and advocates are worried about is really not that complicated – they don’t want to be killed (or others killed) because another person(s) or the state decides that their life is not worth living.

That this is a real danger is not in doubt. Anyone who is acquainted with the details of the murder of Tracy Latimer knows that media coverage and public understanding of the issues followed a similar pattern. There was a sympathetic focus on the suffering of Robert Latimer (and little attention to the facts of the case) and little consideration of the victim.

Why it played out that way requires confronting an ugly truth: due to her disabilities (including Cerebral Palsy, resulting complications, and non-traditional communication) Tracy’s life was seen to be of lesser value and thus her death was seen as a lesser crime. I listened to years and years of talk radio discussions about Latimer and time and time again, the theme came through loud and clear: “She was a vegetable and he compassionately put her out of her misery.”

If you don’t think there’s a connection, guess again. Robert Latimer himself has already made the connection with headlines that he is “pleased with the decision.” To me, this is chilling and frightening, and Canadians need to wake up to the threat. At the very least, they need to admit that they don’t really understand what it means to people with disabilities, and acknowledge that the implications of assisted suicide laws extend far beyond the handful of well publicized cases of terminally ill patients making eloquent arguments to take control of their own future. There is much more at stake.

While a tiny fraction of media coverage thus far has attempted to include concerns expressed by people with disabilities and other disability advocates, the rationale came across mainly as vague and inconsequential. It is not an issue that is easily communicated in sound bites.

That is because understanding how this decision about assisted suicide impacts on people with disabilities requires the broader understanding that this is already a population that suffers from second-class citizenship, both as an attitude by other citizens, as well as in the systemic sense as carried out by our institutions. The legacy of unmarked graves continues to haunt us (as it should).

Premier Wynne issues official apology with regard to Ontario’s institutional past

From my own experience supporting people with intellectual disabilities and their families for the past 30 years or so, I have had the sad privilege of seeing how this discrimination plays out in ways that other citizens would likely find surprising. These realities remain mostly a dirty little secret, because they are often disguised as “benefits” rather than publicly decried for the harms that they do. You have contributed to them indirectly through your taxes, and perhaps even directly through donations or fundraising events to agencies that operate them. These situations include:

• Labour code exemptions that subvert employment law (including paid work at less than minimum wage exempted as “training” that continues indefinitely)
• Segregated environments including entire “disability-only” schools, sports, recreation, and housing (a recent Auditor General report reveals as much as 90% of our public investment supports segregated residential outcomes)

On the bright side, pressure to end discriminatory labour practices is at an all-time high, and Ontario government priorities are clearly encouraging of less segregated outcomes (shifts in social policy and funding now clearly favour community-based outcomes even as more “traditional” practices continue to consume most of our public investment).

I invite you to learn more about the assisted suicide issue and how it should be of interest and concern to Canadian citizens far beyond the limited scope of the stories presented to us through mainstream media. Here is some further recommended reading:

Andrew Coyne (National Post): Crossing the Rubicon, Supreme Court seems eerily complacent about ramifications of assisted suicide ruling

Some day, someone is going to bring a case before the Court arguing that children with an incurable disease and in “intolerable” pain should also have the right to assisted suicide, perhaps with their parents’ consent. Is the Court really going to condemn them to endure years of excruciating pain until they are of age? Likewise, is it really prepared to leave the mentally incompetent to suffer unbearably, when with the signature of a legal guardian they could be released? Or if personal autonomy is all, why should a “grievous and irremediable medical condition” be required? Isn’t it enough that you want to be dead, but need someone to help? At that point the Court will be caught, helpless before its own logic. And by then, so will we.

Catherine Frazee: Expert Opinion Report for the Québec Superior Court, LeBlanc v. A.G. of Canada, September 2012

It is, for all practical purposes, impossible to isolate a request for assistance to end one’s life from the context within which such a request is made. For this reason, within a social order that widely perceives disabled people’s lives and lifestyles to be of diminished value, the availability of medical assistance to terminate life upon demand places some people at risk of making a “choice” that does not reflect their true, autonomous desires.

39%. Is This What Democracy Looks Like?

As a major urban center in one of the world’s leading democracies we need to take a good hard look at ourselves Ottawa.

This is the capital city of Canada.

It’s not insignificant that more than 60% of our eligible voters did not participate in the municipal election.

I understand anger towards those who want to destroy our way of life. I share those concerns. It gripped our city for the past week and it’s still raw.

But how can there be such a big disconnect with our citizenry that they are so passionate about democracy and yet fail to exercise the most basic and fundamental of their democratic rights by skipping the election?

Should we not be just a little ashamed of a 39% turnout?

Can’t we all strengthen our democracy through such relatively simple acts?

We cannot be in complete control of others but we can get ourselves to the voting booth. And until that once again becomes important to us, there is an enemy within.

Apathy and democracy are a truly unhealthy mix.

The Day After #OttawaStrong

It’s a very difficult subject but there is a common misunderstanding or deliberate misrepresentation of “safety” as meaning that the “sufficient amount of safety” can stop all bad things from happening. This simply isn’t true. A rush to judgement at this time will not help #OttawaStrong. We will analyze this with drier eyes and seek a reasonable balance of protection and freedom knowing that 1000 armed guards with assault rifles patrolling our city will not actually help us be or feel safer.

In the meantime, since I suspect most people are a lot like me and won’t even try to pretend they know what should be done about this type of senseless violence, I will try to be a little more kind to everyone, love my family, friends, city, and country a little more, and sing my national anthem with a shaky but louder-than-ever voice on Friday night. Those are things in my control and I know a little more love in the world can actually make a difference even if I am powerless over so much else that I cannot control.

If there is one way that my own expertise and experience can inform this situation it would be my thorough understanding that safety comes mainly from reciprocal and caring relationships with others. That’s not touchy-feely stuff. It’s a fact. I work in supporting a population that is at an exponentially higher risk of violence and abuse than the average person. They are at greater risk because they tend to have vastly fewer natural relationships than other citizens. It took me years to understand that making them safer means, for the most part, not a street-proofing course or cell phone full of emergency quick dial numbers (those are fine to have too!) but rather that I/we increase the number of people in the world who care about them.

For those of us who are not on the front lines, we can truly contribute to #OttawaStrong by building a more caring community.

by Bruce MacKinnon

My heartfelt condolences to those directly and indirectly harmed in yesterday’s tragedy. My thanks to our magnificent first responders and those who were simply “on the scene” by happenstance and showed the world that we are possessed of an unselfish spirit and a determination to live our lives as a community, not as islands of individuals.

Stay strong Ottawa.

A Farewell To Frontenac

It’s done! The papers are signed, keys exchanged, and all that jazz. We had two great years at our cottage on North Otter Lake, but come the start of season three, much like Jerry and Jeannie on Seinfeld, we came to a mutual agreement that it was time to part ways (with the cottage, that is).

We said goodbye to the cottage on Thursday!

So, for those many caring persons who were concerned that we hadn’t made it up there much this summer, now you know the scoop.

It had to do with a lot of factors. This includes the return of CFL football in Ottawa, a long-awaited event, and as season ticket holders, we don’t want to miss a game if we can help it. Since most of them are on weekends during cottage season, there’s a choice to be made. Other significant factors included our work-vacation road trip down the Pacific Coast Highway (reminding us of how much we like to travel and see new things) and re-activating our interest in tennis (as players). That’s a lot of interests and activities to manage alongside the cottage scene.

Probably the simple way to say it is we grew bored of the cottage. It was the perfect size for us, the lake is clean, there’s kayaking and hiking…no problem! Except that we’ve seen every inch of the lake many times over, we’ve driven all the different routes on the road trip, and we just weren’t feeling it anymore. We’d have been sitting on the dock trying to relax and thinking about the tennis tournament of football game or night out with friends we were missing.

You never know until you try! We enjoyed our two years and will remember them fondly, but we are excited to look ahead to future summers full of different adventures!

On The Road, And Then?

I made a good move starting up my new blog Keenan Speaks. It’s a new professional goal to get out more and purposefully spread a positive message about including people with disabilities in the community in neighbourhoods, workplaces, and community venues, and it’s working well.

By working well, I don’t mean merely that I am getting invitations, but rather that the response is delivering results: employers that want to find out more about hiring a person with an intellectual disability, a volunteer board member of a fundraising body that thinks LiveWorkPlay should be a beneficiary, a passionate citizen that wants to volunteer…

It’s also a refreshing break the endless scarcity dialogue. Don’t get me wrong, it’s true that there are thousands of people on Developmental Services waiting lists who need and deserve support. But it’s also true that a lot of what goes on in the sector has little connection to helping people with intellectual and developmental disabilities enjoy an included life in their community. A lot of the resources expended only produce results that exist within the system: institutional forms of housing and institutional forms of human warehousing in agency facilities through day programs and sheltered workshops.

Getting out and talking to “regular people” reminds me that although the system has serious problems and needs to be reformed, there is nothing stopping an agency like LiveWorkPlay from connecting with coalitions of the willing within the system, as well as the big world beyond Developmental Services to make a difference in people’s lives.

I am grateful to Community Living Atikokan and Community Living Thunder Bay who invited Julie and I to visit their organizations in March. This exposed us to new ways that we could make a difference. It doesn’t matter that LiveWorkPlay has certain distinct differences from other organizations. What matters is what we have in common. I’ve come to understand there is lot that other people can take from our experience and that we can in turn learn from them about how to work together to make the world a better place for marginalized citizens.

And so it is that Julie and I are off to two conferences in the relatively distant lands of Wenatchee, Washington (near Seattle) for the Community Summit and Long Beach, California for the APSE National Conference. We are honoured and humbled to be sharing the spotlight with legends like Al Condeluci, Bruce Anderson, Norman Kunc and Emma Vander Klift, and more.

This is also a bit frightening but Julie and I have figured out that something we bring to the discussion is our ongoing very close daily connection with people with intellectual disabilities, their families, and community partners. Nothing we have to say is theoretical: it’s what goes on every day with our staff team colleagues. There’s only 10 of them, so we are close to the action, to understate the situation.

We know that what was celebrated at Engines of Success last Thursday is not typical of what Developmental Services agencies are supporting, and so we have something important to share, even if we’ve not taken a breath to publish books about it or design a training curriculum (not yet, anyway!).

We do hope to inspire people, but also make sure that they understand the difficulty of this work. The real world is a messy place. There are no guarantees and certainties, there is only the relentless drive to support people on their own life journey.

We are excited by also tired, and so it is with great excitement that there is a gap in time between these two conferences, and we are going to take full advantage of this opportunity to spend some time along the sea coast of Washington, Oregon, and California. We desperately need to unplug a little.

We’ll be back for the week of July 7 and I’ll be right back at it with a planning meeting on Monday for the Opportunities and Possibilities: Fundraising and People with Disabilities conference.

I look forward to sharing all of the experiences of this road trip when I return. I expect it will be an odd mix of human services epiphanies to observations about sea otter behaviours! And perhaps there will even be some crossover between the two.

Who knows what’s next? It will be exciting to find out!