Keenan Wellar Keynote Presentation at the Concordia University Education Graduate Symposium, May 4, 2012.

1. (Your Mission, If You Choose To Accept It)

2. Why the Mission Impossible theme? I wanted to make it clear that the fancy title of
this presentation is clearly unsuited to a 20 minute keynote, whereas I think it could
make for a wonderful thesis, and this of course would need to be done by someone
much smarter than myself, and therefore I extend to all of YOU this challenge.
Although my formal academic days are far behind me, through the experience of
building a charitable organization, and perhaps most importantly, being included in a
unique way in the lives of people with intellectual disabilities, their families, and the
systems intertwined in their lives, I’ve made some observations and come to some
realizations that I will now share and will hopefully have value to you.
But before we get too serious, I’m going to call on one of pop culture’s leading
sociological experts to help set the stage with this 90 second video clip.

4. To me this clip has it all. We can take it at face value as an expression of the frustration
and even the intimidation of technology. I am sure many of you in this room who are
educational technology enthusiasts have encountered techno-hostility in your attempts
to introduce and promote the use of technology in schools. We can also look at the GPS
as a system that intends to be helpful but has the power to compel negative outcomes.
And then there is Michael Scott’s heartfelt sentiment that life is about human
connections, and machines are about trying to murder you in a lake. I know in my field it
often feels like the system is trying to drive people into a lake.
When I talk about the absence of a welcoming ideology, I’m talking about the social
exclusion of people with intellectual disabilities. This takes place in two major ways:
first, within the taxpayer-funded system of supports that we in Ontario call
developmental services – the machinery for this exclusion operates under names like
group home, day program, and sheltered workshop. Secondly, we have others systems
in the community, such as schools, sports and recreation, arts and culture, and more,
that tend to exclude through the creation of things that are called “special” it could be
special education, or special gymnastics. If there is some sort of activity that regular
citizens enjoy, then we can create one with the word “special” in front of it, and make
sure that’s where people who meet certain criteria for “difference” belong.

5. It is the supreme art of the teacher to awaken joy
in creative expression and knowledge ~ Einstein

6. I myself decided against a traditional career in education right in the middle of my teacher
training. I did finish my Bachelor of Education back in 1993, but well before graduating, I
knew I would probably never teach in a school. Schools are structured to make learning
very difficult - what with all the bells ringing and the boring textbooks, but that wasn’t
what really turned me off.
The day I gave up on being a school teacher was the day I was chastised for “doing math
too loudly.” I had a 6 grade class, many of whom were recent immigrants from war-torn
Somalia, and I was in a constant battle for their attention. They were struggling with their
new existence, and of course there were adjusting to the very abstract routines of the
classroom. At one point I had succeeded in designing a group work geometry unit that to
me was exceeding all of my expectations. The students were actually interested in math,
and enjoying the work.
This moment of pride did not last long. I was called to the office of the vice-principal, who
had been discretely observing from the school hallway. For a moment, I thought perhaps
some praise was coming my way. Instead, I found myself taken to task because the
classroom was too loud. When I protested that there was no such thing as “doing math too
loudly” I was given an option: stop doing math loudly, or go home. I didn’t go home that
day, but after I finished my degree, I decided I needed to work in a more creative space.

8. If I was just now starting my teaching career, I’d probably be getting in trouble about
technology. I would be arguing that computers, tablets, and smart phones are learning
tools, not distractions from reading, writing, and arithmetic. I have noted that many private
schools and tutoring services are marketing to parents by promising the absence of
technology in their teaching. I cannot see how demonizing technology in this way can be
helpful.
I work with individuals, many of whom did not learn to read in 15 years of formal
education, but became readers as adults, owing largely to computer technology, and often
to engagement with social media. I find it laughable that millions of dollars are being spent
on the development of social media policies for teachers. Stories like this one above that
came out yesterday are typical in their ignorance, in that they try to understand social
media in a static way, as though it is asynchronous and lacks fluidity.
For example, as in the story pictured on the screen, a teacher might be permitted to create
a Facebook group for a specific school task, but they aren’t permitted to communicate with
students via Facebook outside of that particular group. This is exactly like saying that a
teacher can communicate with students on a school outing to a museum, but if they see
the student at that same museum but not during a school outing, they must immediately
leave the building without saying a word.

9. Isn’t it obvious that conversations between students and teachers are not made
right or wrong because they are on Facebook? There are boundaries in the
student-teacher relationship that apply anywhere. If teachers need to be
reminded that those expectations carry through into cyberspace, then fine,
remind them. Talk about it at staff meetings. Discuss strategies. Learn.
But for goodness sakes, we don’t need to be banning social media from
classrooms. At LiveWorkPlay we are happy to interact with our members by
email, Facebook, Twitter…it is no different for us than the office, a coffee shop,
or a fundraising event. The benefits to this are to increase our accessibility and
responsiveness, but more than that, social media reinforces social capital that is
built in other environments, and vice-versa. It is without question that I say the
use of Twitter, Facebook, YouTube and LinkedIn help LiveWorkPlay accomplish
core mission-related goals and objectives.

10. The idea of 'riding the short bus' is used in American
English in much the same way that 'æåëòûé äîì‘
(yellow house) is used in Russian as a reference to
mentally retarded children.
Regular long buses transport regular school children. Shorter buses are typically
used for "Special Education" (i.e., the mentally retarded) public school students who
are typically educated in different facilities or are transported separately from other
students but spend time at the same school in separate classrooms.

11. From my particular vantage point at LiveWorkPlay, I mostly see schools as a place for
teaching people with intellectual disabilities that they belong apart from other kids, and
they teach other kids that people with intellectual disabilities don’t belong with them.
Then they all leave high school, and – if you believe as I believe – they should all be
living, working, and playing together in the community. Except that everything they
have learned in the formative years of their existence has taught them the opposite –
that they belong apart.
This is not to say that people with intellectual disabilities are not increasingly included in
the physical space of schools, or maybe even in the physical spaces of classrooms with
non-disabled peers, but we have yet to come close to a welcoming ideology. At best, I
believe we have achieved something more like tolerance or accommodation – which is
below acceptance, which is below welcoming. For a student with an intellectual
disability to truly belong in the life of a school, there needs to be intentional efforts to
welcome and include all students.

12. Barrie schools
using martial arts
blocker shields on
autistic students
across Simcoe
County
- April 9, 2012

13. Am I exaggerating the problem? I know I am focusing on the extreme here, but it is
2012, and we are talking about a public school system, and this photo by a concerned
citizen set off a public debate that made me angry and sad. The school and school
board in question is standing by their use of martial arts blocker shields by teachers
and teaching aides, not only in the classroom, but also on public outings, as pictured
above.
I myself am a former student of TaeKwonDo, and I know what those blocker shields are
for. If someone is holding a shield like that in front of me, it’s for the purpose of
punching and kicking that shield. Without call for a complex study I’m going to go
ahead and arrive at a conclusion – that the routine of carrying of blocker shields by
teachers and teaching assistants in a congregated classroom of students with autism is
teaching those students, the rest of the students in the school, and indeed the
surrounding community, that autism is synonymous with violence.
I understand that the school board, staff, and union involved in this debate have
arguments in favour of the shields. But very few school boards do this, which means
there are other options, which means they should perhaps stop being defensive, and
find a different way to respect the needs of both students and staff.

14. LiveWorkPlay
Helping the community
welcome people with
intellectual disabilities to
live, work, and play
as valued citizens.
Core value: people with intellectual (developmental) disabilities are
valuable contributors to community diversity and the human family.
Controversial?

15. Let’s take a break from complaining about schools for a minute.
I need to talk a little bit about LiveWorkPlay, and I’m going to gloss over a story that is full
of complexity, some grief, some resilience, and a lot of joy and boil it down to a very
simple summary. My wife and I founded the organization in 1995 because we saw a
problem and we felt a calling to fix it. But by any objective analysis, we did not possess the
skills, experience, connections, or resources for the undertaking. And yet, here we are, 17
years later, supporting 100 people with intellectual disabilities, and more importantly,
connecting with hundreds of businesses and citizens in the community who are embracing
and co-constructing a welcoming community.
Back in the late 1990s when we first achieved meaningful financial resources, we found
ourselves drifting into offering a lot of the same types of programs as other agencies. Our
good reputation owed mainly to trying very hard to do a wrong thing, but delivering it
more effectively than all the other agencies that were also doing a wrong thing. And right
there we see what the proliferation of systems thinking can do. The power of doing what
has always been done cannot be underestimated.

16. About five years ago when we overcame some long odds and found that we had
accumulated significant assets and stability, we took a deep breath and realized
that aligning ourselves with the developmental services systems was not what we
set out to do, and so for the past five years or so we have pursued what many
perceive to be a radical transition. We closed our small sheltered workshop, closed
our quite large day program, committed to never establishing or promoting group
home living, and turned our focus to real homes, real jobs, and real citizenship.
The result, in brief, is that it works! Some individuals who had been deemed
incapable of living in the community and in need of 24/7 group home supervision
are living in homes of their own in non-supervised environments. People who were
working in sheltered workshops for $1 an hour are making ten times that, loving
what they do, and expanding their personal and professional networks.
Our members are spending time with other citizens enjoying hobbies, arts, and
other leisure in places and programs that don’t include the word “special.” We
don’t discourage anyone from enjoying group activities with other people with
disabilities. But we also don’t present to people that this is their only option. We
have had great success finding community members who enjoy mutually beneficial
relationships, learning together, and helping change our community.

17. Social Services A Transformative Journey
Social Change
(Medical Model) (Community Model)
Decisions = Paid Staff and/or Family
Education = Day Program/Special Ed
Recreation = Segregated Program
Employment = Sheltered Workshop
Home = Institutional Setting
Relationships = Paid Staff and/or Family
TRANSFORMATION
Decisions = Self-Directed
Education = Inclusive Classrooms
Recreation = Playing In Community
Employment = Authentic Work/Volunteerism
Home = House or Apartment
Relationships = Family, Friends, Lover, Neighbours
Unpaid Support, Paid Support

18. So what does this welcoming ideology look like in action? It’s about shifting away from a
social services systems approach to a social change approach that is grounded in a
welcoming ideology.
To understand “welcoming” as an ideology requires understanding that the dominant
status of people with intellectual disabilities in society at present is to be separated from
other citizens. In effect, they are a sub-class of citizens with taxpayer-funded mechanisms
that make it difficult for them to rise to full citizenship.
I’ve put some colour-coded starts to reflect my view on the progress we are making in
each area, red meaning lack of progress, yellow meaning so-so, and green meaning a lot
of progress. I think some of the most surprising progress would be in the area of
employment. I have to be honest, there are large numbers of people working now where I
just didn’t see paid employment in their future. They proved me wrong. Sometimes being
wrong is the greatest feeling in the world.

19. “Can she live a full life without ever solving a quadratic equation?
Without reading Dostoyesvsky? I’m pretty sure she can. Can I live a
full life without learning to cherish and welcome those in this world
who are different from me? I’m pretty sure I can’t.”

20. Let’s talk about the consequences of NOT having a welcoming ideology! They extend far
beyond a poor quality of life or abstract conceptions of human rights and potential. They
are reflected in society-wide attitudes and practices whereby – by way of example – it is a
matter of routine for medical doctors to counsel the termination of Down syndrome
pregnancies. I am not engaging in the abortion debate here – I am talking about a woman
and/or a woman and her partner that was intent on having a baby, and then did not have
the baby as a result of a prenatal screening. Finding that extra chromosome directly results
in an abortion about 50% of the time (conservative figure).
“So what?” some might ask. Isn’t the doctor just doing their job by informing the mother
that they are carrying a baby that is sure to have a terrible life?
A recent study in the United States revealed that 99% of parents say they truly love their
son or daughter with Down syndrome; 88% of brothers and sisters say they are better
people because of their sibling with Down syndrome, and people with Down syndrome
themselves spoke up, too: 99% are happy with their lives, and 97% like who they are. I
daresay those figures are a lot higher than most individuals and families!
If you are thinking medical difficulties, their have been dramatic improvements, and the
average life expectancy for a person who has Down Syndrome will soon exceed 60 years of
age. So what is going on here? More than 80% of doctors admit they have NO training
whatsoever as regards providing information about the life of a person with Down
syndrome – and yet they are offering critical guidance as experts at a time when expectant
parents are at their most vulnerable.

21. "If Canadians believe in equality
for all citizens, recommendations
in this report must be acted
upon to ensure our handicapped
and disabled no longer suffer the
additional hardship of public
ignorance.“ (1981)
Equality before and under law and equal protection and benefit of law.
15. (1) Every individual is equal before and under the law and has
the right to the equal protection and equal benefit of the law
without discrimination and, in particular, without discrimination
based on race, national or ethnic origin, colour, religion, sex, age or
mental or physical disability.
Canadian Charter of
Rights and Freedoms 1982

22. We recently marked the 30th anniversary of the Canadian Charter of Rights and
Freedoms. I choose the word marked, because I realize not everyone in Canada
celebrates the Charter of Rights and Freedoms. I celebrated, and I got caught up in I think
a rather unknown story of how “mental or physical disability” came to be included in the
Charter of Rights and Freedoms. It had largely to do with the work of the Special
Parliamentary Committee on the Disabled and the Handicapped of 1981. The chairman
of that committee was MP David Smith, now a Senator. Last week I attended when he
rose in the Senate to talk about how he and the other committee members were
profoundly affected by the experience of meeting people with disabilities across the
country, and from that experience, the were driven to ensure that disability should be
included in Section 15. It was a non-partisan effort that had MP Smith at odds with his
own Liberal caucus, until, apparently, he literally annoyed Prime Minister Trudeau into
becoming a supporter.
I found myself crying a little bit when he finished his speech, and at first I wasn’t sure
why. In preparing for this presentation today, I came to realize that I was upset because
the Obstacles report that they produced had clearly identified issues that are still with us
today. I wept for our lack of progress. It’s not that there has been no progress. The basic
safety net for people with intellectual disabilities is much improved. There is poverty, but
basic survival is less in question. But, as it was described in the Obstacles report, it is still
a very hardscrabble life. This is not a welcoming society and we have not embraced a
welcoming ideology as part of our national identity.

23. The split-decision ruling says mentally disabled adults are able to
give truthful and reliable testimony, even if they can't explain
what an oath is. "Adults with mental disabilities may have a
practical understanding of the difference between the truth and a
lie and know they should tell the truth without being able to
explain what telling the truth means in abstract terms.”

24. If you think I am being unfair, consider this example: 30 years after the Obstacles report
and the Charter of Rights and Freedoms, we’ve just now arrived at a point where a
person with an intellectual disability who does not possess a sophisticated vocabulary
can testify against their abuser. At least so says a recent Supreme Court ruling.
I can tell you however that it will probably take a long time for this ruling to trickle down
throughout the justice system.
I can foresee many future battles for personhood for people with intellectual disabilities
in the years to come and many more trips to the Supreme Court.

25. A perfection of means, and confusion of aims, seems to be our main problem ~ Einstein

26. This is hot off the presses: down south a big battle is already underway, and although there
will obviously be some differences, it could be coming to a province or country near you.
The strength of the Americans with Disabilities Act in the United States is helping facilitate
some interesting developments, including this very fresh news of the US Department of
Justice jumping in to comment on a class action suit against the State of Oregon for the
closure of sheltered workshops.
The basic argument of those who brought the suit is that a sheltered workshop – where
people with intellectual disabilities are congregated in a work like setting and work for
wages that are usually far below minimum wage – is NOT an accommodation of disability,
but instead an unfair assumption about lack of worth in the labour market and in society.
I am not suggesting for a minute that real employment for people with intellectual
disabilities is easy. There will be a need for a great deal of creativity. But progress will never
happen if we continue excusing the problem by creating work-like environments such as
sheltered workshops that continue to send the message to the community that people
with intellectual disabilities do not belong and are incapable of belonging in community.

27. Prison of Protection
Protect from
Sexual Information
Vulnerable
Protect from Protect from
Relationships Decision-Making
Abuse information:
Person Adapted from:
Dick Sobsey Protect from David Hingsburger
(Google him) Society (Google him)

28. Most people with intellectual disabilities don’t find themselves shackled by the courts,
they find themselves shackled by something that Canadian Disability Hall of Fame
inductee, author, and speaker David Hingsburger calls The Prison of Protection.
Here we see the Prison of Protection, which one could view as a guide for how to
construct a vulnerable person – don’t tell them about sex, protect them from unpaid
relationships, make sure they rely on others to make decisions, and make sure they are
afraid of strangers. That’s a great way to create victims, and the system is doing a great
job of it. Professor Dick Sobsey at the University of Alberta is in my opinion the world’s
leading expert on the mistreatment of people with disabilities. He has been trying for
decades to draw attention to the elevated rates of abuse for people with intellectual
disabilities, which is 8-10x higher than the average citizen.
And yet all of this is done to people with intellectual disabilities, often with the best of
intentions, and usually in the name of risk prevention and safety. To be clear, this is not
solely about human services systems. We also see this coming from families. A lot of our
work at LiveWorkPlay is about helping individuals break free of a prison of protection that
has been imposed by their own family members. This is of course particularly difficult
work, given the family members may not share the perspective that these restrictions are
detrimental. Or, more likely, they may believe with 100% certainty that life outside of the
prison of protection is simply too dangerous.

29. The issue of decisions is particularly important, and this is a real barrier to full citizenship.
We need to find a way that a person with an intellectual disability who has their own
apartment and a paid job doesn’t get turned away when they try to open a bank account
because they aren’t competent to understand the small print – or like the rest of us, they
don’t have the skills to fake their competence.
The United Nations Declaration on the Rights of Persons with Disabilities, which Canada
has signed and ratified, proposes that we should be developing a method of supported
decision-making, whereby a person can have a legally recognized system of getting help
with their decisions without giving up the right to be in charge of those decisions and have
them respected before the law. There is some progress here, and some interesting
developments in British Columbia with other provinces starting to move towards
proposals and solutions.

30. ACTUAL CONVERSATION
(me and bowling alley staff)
Did you want me to put up
the gutter guards?
Why?
Well, aren’t some of them
special needs people?
We just want to bowl.
But it’s no fun if the ball
always goes in the gutter.
Thanks for your concern, If we can’t even bowl
but that won’t happen. together, surely all hope for
But aren’t some of them a welcoming society is lost?
like, Special Olympics people?

31. You may recall back in 2009, President Obama appearing on the Tonight Show made a
joke about being such a bad bowler that his skills were appropriate to the Special
Olympics. I was kind of hoping his faux pas might lead us into a public debate to
challenge the value of Special Olympics, but instead it turned into Obama apologizing
profusely about how great Special Olympics is and how much respect he has for the
athletes. Let’s think about that for a minute. If we really respect Special Olympics
athletes, why can’t they just bowl with the rest of us?
I find it somewhat ironic that the US Department of Justice is supporting a class action
lawsuit for an end to segregated employment in sheltered workshops in Oregon
because they see the harm of segregated employment, and yet segregated sports
continues to be celebrated.
Bear in mind I’m NOT saying that if a group of people with disabilities want to hang
out together formally or informally for sports or any other reason shouldn’t do that.
What I am saying is Special Olympics was created back in the 1960s as a response to
people with intellectual disabilities being excluded from sport. Some 50 years later,
shouldn’t we have arrived at a point where Special Olympics has become irrelevant?
Why is it taking so long for us to learn to bowl together?

32. SCARCITY ABUNDANCE

33. One of the consequences to the systems model or medical model for people working in
any field related to intellectual disabilities is that it seems we are forever doomed to a
scarcity conversation. If we believe in supports and services that segregate citizens with
intellectual disabilities from others, then no matter how much money we have, it’s
never going to result in people with intellectual disabilities achieving full citizenship,
with all the rights, responsibilities, risks, and rewards that it entails. The best we can
hope for is to do a wrong thing well.
If we shift to a community model, or social model, or social change model, there is
limitless capacity for change, because the community already has all the answers. There
are apartment buildings. There are workplaces. There are recreation centres.
The challenge before us therefore should be how to include people with intellectual
disabilities in that abundance, rather than how to maintain the outdated outputs and
unsustainable expense that has resulted from the proliferation of systems thinking.

34. HOW TO SUPPORT INCREASED SOCIAL CAPITAL
FOR PEOPLE WITH INTELLECTUAL DISABILITIES
MORE ONLY AS
NEEDED
Family
Friends Workers
Colleagues Staff
Co-Workers Doctor
Classmates Psychologist
Neighbours Psychiatrist
Maybe we’re not Spouse Social Worker
rocket scientists?

35. This can all get very complicated, and when I try to discuss these issues in a systems
context, it is very hard to maintain a focus on the prize:
A welcoming community.
Which in turn results in a radically improved quality of life for people with intellectual
disabilities and better communities for all.
Most of these systems were set up in the first place to address inequality, but over time,
while addressing some problems, they created others, and in particular have served to
reinforce the second class citizenship of people with intellectual disabilities.
I want to emphasize that for me this is not about saving money, and yet, at the same
time, if we increase the green items in the list above, the cost is much less than if we
increase the orange items, and really, who among us wants to be spending more time
than necessary with the people in the orange list? We can respect their work and
appreciate it when we need it, but it’s not my goal in life to accumulate those
relationships, I’m sure it’s not yours either, and we shouldn’t expect people with
intellectual disabilities to think any differently.

36. More Albert Einstein…
If we knew what it was we were doing, it
would not be called research, would it?
The world is a dangerous place to live; not
because of the people who are evil, but
because of the people who don't do
anything about it.
We cannot solve our problems with the same thinking
we used when we created them.
All that is valuable in human society depends upon the
opportunity for development accorded the individual.

37. That first quote is for you, please don’t play safe in your future research choices.
Help inform the world.
You can’t solve all the worlds problems, so my suggestion is to pick one, and do your
best.
As a follow up to that, you will need to team up with other people, but if they
schedule a year of weekly meetings to solve the problem of having too many
meetings, look elsewhere.
Systems are a reality. They are necessary. But when you find yourself struggling to
determine the value of a particular proposal, endeavour, or activity, ask yourself
how it supports the development of the individual. I challenge myself with this all
the time. Sometimes we have to compromise, but being aware that you are
compromising is sometimes the best we can do.

38. We need more than a systems adjustment.
We need an ideological revolution.
You’re welcome to join in.
People with intellectual disabilities are valuable contributors to
community diversity and the human family.