When talking 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, a different level of injustice: 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?

1. 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 Wellar
World of Good Practices
July 13, 2014

2. 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.

4. 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?

5. 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?

6. 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.

7. WHY DO I CARE?
I DON’T WANT PROTECTION
FROM BEN…

8. 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.

9. 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!

10. 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.

11. So why should people with
intellectual disabilities…
All live together?
All work together?
All play together?
(Adapted from hope-house.org)

12. 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.

13. If you have an intellectual disability,
it’s not such a good thing to be "SPECIAL"
SPECIAL PEOPLE
Stigmatized. Pitiable.
SPECIAL PROGRAMS
Limited. Dream-Crushing.
SPECIAL PLACES
Isolated. Segregated.

14. 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.

15. VISION: A COMMUNITY WHERE
EVERYONE 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.

16. 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!

17. EXCLUSION INCLUSION
What’s Our
Investment?

18. 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.

19. BEYOND
REMEDIATION
BEYOND
ACCOMMODATION
VALUE

20. 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.

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

22. 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.

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

24. 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.

25. “Thank you for choosing Acme Support Services,
where we proudly facilitate inclusion and individual
independence through person-centered planning!”
Getting It Wrong
Starts With The
Core Dishonesty
Called “Planning”
“Now, let me start by reviewing the list
of fixed choices available to you!”

26. 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.

27. IT’S TIME FOR A MORE APPETIZING MENU!

28. 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.

29. @SOCIALKEENAN
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30. 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.