INCLUDE• to make/welcome someone as a part of

a group, community, or society

EXCLUDE• to prevent or restrict someone from

participation or consideration as a part

of a group, community, or society

Keenan WellarWorld of Good PracticesJuly 13, 2014

It’s great to be a part of this incredible initiative, the International Summit on Accessibility. One of the challenges in speaking to those of you here with me today is that you likely have a great deal of life and professional experience around issues of accessibility, so I doubt I’ll be breaking much new ground. Rather, I hope to contribute to a dialogue around inclusion and exclusion as it relates to a particular marginalized population that does not as yet have a very strong voice in the accessibility conversation.

When you talk to the general public about disability and accessibility, this is often what comes to mind: they see a person in a wheelchair who cannot get through the door. These types of barriers remain of course, and I am sure right here in this city someone will go out looking for work tomorrow and experience this very same injustice. But today I want to talk about a different type of barrier: what if the very people and systems that are supposed to be supporting a person with a disability to have success in the community are deliberately investing in keeping them out of the community? What if they are discouraged from even trying to get through the door?

FOR PEOPLE WITH INTELLECTUAL & DEVELOPMENTAL DISABILITIES, EXCLUSION OFTEN MEANS NOT ONLY BEING FACED WITH BARRIERS TO COMMUNITY INCLUSION, BUT BEING DELIBERATERLY SEPARATED AND

SEGREGATED FROM NON-LABELED CITIZENS AND THE COMMUNITY.

HOW FAR HAVE WE REALLY COME FROM THE DAYS OF THE ASYLUM FOR IDIOTS?

On December 9, 2013, Premier Kathleen Wynne rose in the legislature to issue a formal apology on the behalf of the Province of Ontario for the neglect and abuse suffered by people with developmental and intellectual disabilities at the Huronia, Rideau, and Southwestern regional centres. These mass institutions represent the most dramatic symbols of the investment of our society to segregate and separate people with intellectual disabilities from their communities. But closing these buildings ended neither the practices nor the attitudes that have kept segregated infrastructure going for the entire history of our country.

WHY DO I CARE?I DON’T WANT PROTECTION FROM

BEN…

In case you are wondering, here’s the brief answer to “Why do I care about any of this?” That’s me in the black and white tuxedo in 1986 at high school graduation. Two years later I applied for a part-time job working with youth with developmental challenges. I applied for the job by mistake, because I thought a developmental challenge referred to kids from low income families. So although I found the interview questions to be very strange indeed, I somehow got the job. And that’s when it happened. For the first time in my life, I met a person with the label Down syndrome. I met a person with the label of autism. Heading home that night I found myself overcome with feelings of sadness and anger. Why? Because I realized at that moment that these people had been hidden from me my entire life. As a kid they were hidden from me in special schools and special classrooms. As adults they were in group homes and day programs and sheltered workshops. I knew this was wrong and I vowed to one day do something about it,. Because I don’t need protection from a kid like Ben, and Ben shouldn’t need protection from his own community.

HOW DO I KNOW? I HAVE BEEN THERE AND DONE THAT. THE POPULARITY OF WHAT WE DO IN HUMAN SERVICES CANNOT BE THE STANDARD BY WHICH WE JUDGE OUR OUTCOMES!

In 1995 my wife Julie Kingstone and I started the charitable organization LiveWorkPlay here in Ottawa with the goal of doing something very different. But with the best of intentions, we soon found ourselves building segregated infrastructure and programs, like day programs and sheltered workshops. The good news is, of our own volition, we took a lead role in putting a stop to this more than 7 years ago, but you have to understand that right now sheltered workshops and other site-based segregation is not only continuing, but growing, with much of it supported by taxpayer dollars.

So why should people with intellectual disabilities…

All live together?All work together?All play together?

(Adapted from hope-house.org)

When you confront leaders that make segregated settings possible and question why we are investing in deliberately keeping people with intellectual disabilities out of society, the answers vary slightly, but they all tend to be formed around the idea that there is just “so much that these people can’t do” and that it’s therefore a type of blessed mercy that that they can experience the safety of exclusion from their own community. Is supporting a life in the community easy? No, it’s complicated and messy, and wonderfully so. There are few citizens who would accept anything less that those opportunities and possibilities and it’s a violation of fundamental human rights that some citizens are excluded from the path of life.

If you have an intellectual disability,it’s not such a good thing to be "SPECIAL"

SPECIAL PEOPLEStigmatized. Pitiable.

SPECIAL PROGRAMSLimited. Dream-Crushing.

SPECIAL PLACESIsolated. Segregated.

This type of special treatment is not something any of us wants. It means being stigmatized as incapable, ongoing relegation to isolation and dream-crushing environments, and continuous limitations imposed on your life according to what other people think about you.

VISION: A COMMUNITY WHEREEVERYONE BELONGS.

MISSION: HELPING OUR COMMUNITY WELCOME PEOPLE WITH INTELLECTUAL DISABILITIES TO LIVE, WORK, AND PLAY AS VALUED CITIZENS.

VALUE: PEOPLE WITH INTELLECTUAL DISABILITIES ARE VALUABLE CONTRIBUTORS TO THE DIVERSITY OF OUR COMMUNITY AND TO THE HUMAN FAMILY.

These are the guiding statements of LiveWorkPlay, and not to say we aren’t proud of them, but the concepts don’t vary much from agency to agency. The problem is, except in very rare circumstances, there is no internal or external oversight applied to make sure that the outcomes match the mission. In fact, more often than not, the work of developmental services agencies contributes more to exclusion than it does to inclusion!

EXCLUSION INCLUSION

What’s OurInvestment?

How bad is it? First of all, it’s difficult to know, because aside from a smattering of agencies that are challenging themselves to do the right thing, no one is keeping track. My own research combined with data from the United States – data which is superior to anything we have in Canada - indicates that about 80% of our resources go towards infrastructure and activities that serve to exclude, and only 20% that supports inclusion – like having an apartment, a job, real friends, and non-segregated social and recreational activity in the community. In other words, what most of us would think of as an ordinary life.

BEYOND REMEDIATION

BEYOND ACCOMMODATION

VALUE

Are these investments in segregation a result of trying and failing to support inclusion? No. Mostly, it is not attempted at all, despite decades of evidence that shows group homes and day programs are almost always destinations, not life journeys. When Royce, pictured here, was first introduced to LiveWorkPlay he had just been featured in the newspaper as in need of 24/7 constant care. He certainly had a big stack of papers explaining all of his problems. And yet within one year he was living in his own apartment, and within two years had become a valued employee of Dow Honda. It all started with the simple process of asking Royce what HE WANTED out of life. Unfortunately our human services infrastructure often has difficulty seeing human beings as more than their stack of files. We all deserve to be more than the labels others apply to us.

LOWERING THE BAR20 YEARS AGO: “MATT WILL NEVER WALK OR TALK” 2 YEARS AGO: “MATT, A PAID JOB IS NOT FOR YOU”

Earlier presentations at this conference have referenced high rates of unemployment for people with disabilities. Mostly because they are not even supported to try, the unemployment rate for people with intellectual disabilities is upwards of 75%. Our investment in exclusion means that access to the community is denied through the constant lowering of expectation. The bar was lowered for Matt right from birth, when his parents were told he’d never walk or talk, and much more recently, that he should probably forget about his dream of having a real paid job. We helped Matt access a summer employment opportunity at Imperial Coffee, and he did the rest. He worked so hard and learned so fast that his employer simply couldn’t let him go. We all need a chance to show what we can do, but opportunities are systematically denied to people like Matt, and we all lose a s a result.

“SPECIAL NEEDS SOCCER IS ON THURSDAY. THIS IS TUESDAY!”

If people with intellectual disabilities want to freely assemble and do things together, then hey, that’s great. The reality is they are mostly forced to congregate with each other, and just like I experienced back in 1998, they are excluded from any opportunity at relationships with others. Chris, pictured just behind the soccer ball, got rejected from various sports leagues, where organizers kept insisting that he must join “special needs bowling” or “special needs soccer.” We found a league called Ottawa Rec Sports that believes in the value of inclusion, and Chris now has a soccer team where he is appreciated as a teammate, not only on the field where he can kick the ball like nobody’s business, but also for telling stories after the match over wings and beer.

“Thank you for choosing Acme Support Services, where we proudly facilitate inclusion and individual independence through person-centered planning!”

Getting It WrongStarts With The

Core Dishonesty Called “Planning”

“Now, let me start by reviewing the listof fixed choices available to you!”

Where it all goes wrong is right from the beginning, with what currently passes for “person-centred planning” in our system. In reality, what goes on most of the time is agencies have certain programs and services in place, typically featuring segregated settings, and those are explained as if they are the only life choices available. Real person-centred planning means you earn the trust of person so they can tell you what they want out of life, and then you do your best to help make it happen. That’s not how it is working now. Planning serves agencies instead of people. It’s time for change.

IT’S TIME FOR A MORE APPETIZING MENU!

That change needs to start with a more appetizing menu of human services. Instead of four choices that lead to exclusion for every one choice that leads to inclusion, let’s work to take exclusion off the menu, and focus instead on a recipe for success that results in inclusion and access to the community with the full range of options as are available to all citizens. If it doesn’t help people access the community, take it off the menu. It’s time to stop dishing out segregation on the taxpayer’s dime. It’s time for change.

@SOCIALKEENAN

CHOOSE

TO

INCLUDE

In conclusion, let’s stop investing in segregation and exclusion. Let’s start investing in access and inclusion. Let’s create a new menu of choices that feature possibilities, not limitations. Let’s redirect our investment away from doing the wrong things and let’s do the right things. Together let’s help all citizens walk the path of life. Thank you.