Visiting the 9/11 Memorial and Survivor Tree in NYC

Our team arrived in NYC on the weekend and we had the opportunity to visit the World Trade Centre 9/11 Tribute Site.
Our amazing volunteer guide told us the story of the Survivor Tree which was buried and burned, uncovered, nursed back
to health, then toppled by a hurricane, and ultimately has grown to 30 feet on the site. She also explained that her
husband was a tower survivor and asked us to remember not only those who perished, but also that more than 15,000
people got out of the towers in about 100 minutes, and urged us to enjoy the possibilities of life. We hope that is a
message we can deliver today. In supporting people with intellectual disabilities we often become consumed with
assumptions of what cannot be done instead of assuming that it will be done, if only we try, learn, and try again.
2

This is our plan for the hour. We may need to move quickly on Tools & Tips and Communications in order to leave time
for questions.
3

In his keynote yesterday Jonathan Mooney talked about all the focus on remediation of people with disabilities of all
kinds, and how we must move beyond “fixing” people and make appropriate accommodations for their differences. We
agree wholeheartedly, and would add that what neurodiversity is all about is moving beyond accommodation to a point
where differences are welcomed and valued.
4

We’ll start near the end then go back to the beginning. During the 3 year transition away from our day program
structure, we worked simultaneously on updating our guiding statements to more properly reflect on our work and its
intentions. Note in particular that our mission is “helping the community” this is of critical importance – yes, we help
people with intellectual disabilities with strategies for having greater success with others in the community, but we see
the primary responsibility for reducing and eradicating the marginalization of people with intellectual disabilities as a role
for the entire community.
5

Our values statements are designed to align with the United Nations Convention on the Rights of Persons with
Disabilities. These simple but powerful statements mean that a person with an intellectual disability has the right to
experience (and the support to experience) the world on an equal basis with others.
6

We are not that far away! Come and see us sometime. A key characteristic of our organization is that we are deliberately
leading-edge in our approach, constantly challenging our own practices and measuring them against the innovation and
progress of others on the local, national, and global scale. We will never be the biggest. But we can always try to be the
best we can be.
7

KEENAN: His first career goal was to become a teacher, but he fell into a part-time job working with individuals and
families with developmental disabilities, then worked in school system, and met Julie.
JULIE: She had a lengthy relationship with Christie Lake Camp and supporting economically disadvantaged children. As a
career she was interested in education and psychology, and then she met Keenan.
We each had to make a living so when we started developing LiveWorkPlay together Julie was working in palliative care
and Keenan was working for an information technology firm.
We each have 3 university degrees. In our professional development in recent years Julie has focused on a lot of
operational and strategic issues, Keenan has focused on communications and policy issues.
We got married in 2001, 6 years after co-founding the organization, and 4 years after leaving our other careers to focus
on LiveWorkPlay full-time.
8

Why did we decide to start a charitable organization to help people with intellectual disabilities? It’s hard to say exactly,
other than through happenstance as young adults we developed the awareness of their extreme marginalization in our
community and felt compelled to try and make a difference.
In the beginning we spent about two years with individuals and families, and various professionals involved in the sector,
and our focus was on access – helping people access the existing resources in the community. But over time what
transpired was awareness of significant dissatisfaction with what was available – not only the barriers to services such as
long waiting lists, but real dissatisfaction with the limitations in terms of attitudes and practices related to housing,
employment, and life in the community in general.
9

Please watch this video “flash from the past” and tell us what you think of this public service announcement from about
8 years ago.
10

So what happened next is a story that we see again in social movements, the very act of organizing takes things in
unintended directions. As we began to acquire resources, we built up infrastructures and developed relationships with
funders and eventually found ourselves replicating a lot of the same structures that we were supposed to be avoiding.
This first took shape with the creation of a day program, which had the snappy acronym “SMILE” and the equally snappy
full name Skills and More for Independent Living and Employment. I want to emphasize that SMILE was extremely
popular. People wanted IN to SMILE so badly that we endured a combination of threats and attempts at bribery from
family members who wanted their son or daughter to be a part of it.
And so with that sort of external validation it’s only natural that one feels a sense of pride and so without really noticing,
our identity had essentially become “operators of one of the most popular day programs.” We likely could have kept
along that path and today have an even bigger and even better day program for which we’d win awards, get wonderful
media coverage, and most likely enjoy additional financial success.
11

Doing the wrong thing can be really popular!
The whole idea of the sheltered work environment we created was really a lack of belief on the part of the staff, family
members, and government that the people we support could get and keep jobs.
We also enjoyed lots of positive benefits in terms of publicity and control, not to mention funding – we could likely
recreate and rebrand this project in 2013 and get it funded all over again. Of course, we’d have to ask our members to
quit their real jobs and come back.
12

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 and author 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 romantic 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.
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.
13

One of the consequences to the medical model for people working in any field related to intellectual disabilities is that it
seems we are forever doomed to a scarcity conversation. I don’t know about all of you, but when I start to get worried
about burnout, it’s usually because I’ve gotten caught up in in some sort of conversation about scarcity, and the
conclusion of those conversations is always that there is nothing to be done without additional resources.
But the thing is, if one the outcomes of our supports and services is to 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 and social inclusion.
If we shift to a community model, or social model, there is limitless capacity for change, because the community already
has all the answers, and they just need our help to make it happen. There are apartment buildings to live in. There are
workplaces to work in. There are community centres to enjoy sports and culture. The challenge before us therefore
should be how to include people with intellectual disabilities in that abundance that is the community, rather than how
to maintain a medical model of disability that will always suffer from financial scarcity and is not even designed to realize
inclusive outcomes.
14

It’s time for a story to help us enter into the discussion about WHY we decided to make a dramatic shift from a program
model to a social change model. This is Phil. Phil is not great at reading or writing, and his verbal communication is
difficult to describe. Some people say he reminds them of Robin Williams. If you know and respect Phil, you see his
communication as very rich and you see Phil as fully capable of communicating his wants and needs. Phil and his parents
got told “never” about a lot of the possibilities discussed for his future. But Phil has gone on to live in his own
apartment, and also to shop for his own groceries. But before that was possible, a LiveWorkPlay Community Connector
(staff) helped Phil get to know the customer service staff, who treat him with respect.
15

One of the challenges with making the shift from a program or social services approach to a social change or community-
based approach is that investing in the community can result in much better returns, but they are also less secure. The
day program or sheltered workshop or group home or segregated recreation program is always “there.” Helping people
believe in in what is possible requires sharing the experiences of others and bringing families together for unbiased
dialogue.
17

There is a certain six letter word that has the power to both inspire and frighten. Sometimes it does both at the same
time. Yes, C-H-A-N-GE. Change! Last year I had the opportunity to hear Dan Heath speak at a United Way Ottawa event.
He’s one of the authors of the popular book Switch: How to Change Things When Change Is Hard. When Dan and his
brother Chip started their research on change, the two comments they heard from people most often were: "Change is
hard.“ "People hate change." What they found was that even when the logical side of people’s brains recognize the need
for change, that doesn’t mean the emotional side is ready to come along. But when both line up, then people perceive
change as positive.
18
Keenan Wellar "Being The Change" LiveWorkPlay AGM
09/23/2011

There are countless reasons for not trying to create social change, at the individual, organizational, or systems level.
Which makes for a self-fulfilling prophecy that change is too difficult. At LiveWorkPlay we expect to fail and all it means
to us is we haven’t yet found the solution.
19
09/23/2011

LiveWorkPlay is not a “family organization” but has always recognized and benefited from the contributions of family
members as the key partnership in supporting people with intellectual disabilities to have a good life. But we are careful
to make sure that we do not overstate the relationship to mean that other citizens are not welcomed as contributors,
problem-solvers, and leaders of the inclusion movement. There is often a disconnect between organizations that are
promoting inclusion while at the same time are excluding (explicitly or more subtly) the contributions of others.
20

Without a day program as the “tie that binds” we wondered what would happen to the strength of our internal
community – while nobody could disagree that we needed to engage the wider community as a key to inclusive
outcomes, would people continue to rally with each other? Would individualized support mean the end of collective
efforts? This has not happened, and in fact we are averaging one major event per month, mostly of the community-
building variety, where people gather to share a meal and stories. The growth is not from our members and their family,
the growth is from other people in the community who have joined in – like co-workers and employers, volunteer
colleagues, and extended networks. This helps build community capacity and is also an encouraging message for
newcomers who have yet to see what “social capital” means in a practical sense.
21

So what does a neurodiversity approach look like in action? It’s about shifting away from a social services systems approach to a
social change approach.
This requires acknowledging that the routine 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 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.
When we look at everything in the brown section here, there are a lot of best intentions that historically represented improvements
over extreme isolation and neglect. But you know, at conferences like this one 30 years ago, there were conversations about social
role valorisation and community inclusion, and moving beyond a systems life, and I think it’s fair to say that our infrastructures
remain focused mainly on remediation and accommodation, and are in many ways counter-intuitive to people with intellectual
disabilities living as fully valued citizens. How can exclusive environments hope to achieve a culture of neurodiversity?
I want to emphasize that for me this is not about saving money, and yet, at the same time, here we are in these days of scarce
resources, and the fact is, if we have success with what is going on here in the green section, there is huge potential for cost
reduction, and in many cases, we are talking about some individuals that won’t need any systems help at all, which frees up funds
to help others, including those with intensive needs that are difficult to serve.
22

Increasingly agencies who are involved in supporting people with intellectual and developmental disabilities “talk the
talk” of person-centered approaches, but in reality, they are mostly just using different forms to offer a limited set of
choices. Individualized support in pursuit of community inclusion requires transparency about limits and a continuous
effort to remove systems barriers to inclusive outcomes.
23

Have you ever asked a person with an intellectual disability to list all of the important people in their lives? How many of
the names they come up with would be in the red list, and not in the green list? How stark a difference in that list is there
for the average person with an intellectual disability versus other citizens?
24

Above right, Ian and Warren Murphy (aka the twins) enjoy a beer in their condominium apartment with mom Elaine. Like
many parents, Elaine and her husband Jack recognized they could not keep the boys at home forever, but were unsure
about other options. Over a period of several years (including a demonstration project) they made the move to living in a
home of their own with “outside in” support from LiveWorkPlay.
Below right, Caroline Matte was caught in the social services safety net which kept her from homelessness but she also
became lost in the system, living in a large group residence with a tiny footprint of private space. This lasted for about
two years during which time Caroline, an active artists, ceased to paint and draw.
25

LiveWorkPlay has developed excellent partnership with local non-profit housing providers such as Centretown Citizens
Ottawa Corporation where Caroline now has an accessible apartment unit. Her desire to paint and draw has returned,
and the latest and greatest news is that Caroline has found love! At age 46 she has met boyfriend Jason and they have
big plans for the future.
26

Again, many of the systems solutions of today came from the best intentions of yesterday and have resulted in the
maintenance of barriers to inclusion in the future. Where people with intellectual disabilities are congregated in a work
like setting and work for subminimum wage, we need to come up with honest answers to questions like: is sheltered
work an accommodation of disability, or is it an unfair assumption about lack of worth of people with disabilities in the
labour market and ultimately in society itself.
At LiveWorkPlay we have largely abandoned even our own traditional thinking about what it means to be “job ready.” For
an individual that states “I want to work” even as we help them improve their chances of being hired, we keep an open
mind. For example, the story of Jeremy and Vaughn (coming up).
27

We had known Jeremy for only a very short time last year. The opportunity to support him came up because his family
was in crisis. Jeremy had never had a paid job before, but he was clear that he wanted to work. As a result of a
presentation to a local Rotary club, Vaughn approached us, and in reviewing our list of members looking for work, Jeremy
was the only possible fit, so with a number of steps we helped bring the two together and the rest is history.
28

If we can’t even bowl together, is the dream of neurodiversity and an inclusive community realistic? Why is there still so
much “special” out there: education, sports, and even recreational bowling?
29

The reality is, many of our members have developed such busy lives that our staff can’t find time to meet with them to
check in! This includes post-secondary education (where we feel we are just getting started in being successful
supporters and advocates).
30

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. We challenge ourselves
with this all the time. Sometimes we have to compromise, but being aware that you are compromising is sometimes the
best we can do.
31

Well-intentioned organizations and individual staff members that see the social capital deficit for people with intellectual
disabilities often try to fill that void themselves. This is dangerous and sad. By creating such a complete dependency, the
future of the individual is tied almost exclusively to the future of the organization and the paid staff in their lives. So
rather than attempting to fill the void ourselves, we seek to act more as a bridge, building connections in
neighbourhoods, workplaces, and social relationships.
32

While many of our 120 active volunteers contribute through 1:1 relationships (some of which develop into friendships)
volunteers are also leaders and develop initiatives of their own, like the LiveWorkPlay Race Weekend Team which was
started by volunteers and continues to be lead by them with minimal staff involvement.
33

Sometimes organizations limit the potential contributions of volunteers by prescribing what their role will be. Volunteers
are also a lot of other things – they probably work somewhere and have all sorts of personal and professional
connections. With every volunteer that invests in getting to know one of our members (and vice-versa) this opens up a
world of opportunities. While it is often assumed that these relationships are largely a one-way benefit, this simply is not
the case – neurodiversity is being realized every day through 1:1 relationships of mutual benefit.
34

There are countless reasons for not trying to create social change, at the individual, organizational, or systems level.
Which makes for a self-fulfilling prophecy that change is too difficult. At LiveWorkPlay we expect to fail and all it means
to us is we haven’t yet found the solution.
35
09/23/2011

We serve about 100 people with intellectual disabilities a year – noting that a few of the people we are supporting reach
a point in their lives where they are just plain done with the system – they’ve got a job, a home, and a network of natural
supports, rendering agency support redundant. The only thing that trumps big moments like a person we are supporting
getting their first job or their first apartment is the moment when they tell us “It’s been nice, but I’m not sure I need you
anymore.” Shouldn’t that really be our goal – even if we might not always get there?
36
09/23/2011

When Chris Jones lost his mother with little notice and little opportunity for planning, the immediate systems response
was to recommend systems solutions. What happened instead (and we can still hardly believe it ourselves) is the
LiveWorkPlay community and our community partners rallied around Chris and we found solutions that were right for
Chris. With little decision-making experience we did our best to listen careful during a very stressful time for him with big
decisions that needed to be made. Chris now has a place to live that he loves, has his own dog-walking business that
pays well, and has many friends and hobbies that he enjoys.
37

The reality is, the day program was pretty easy – easy to run, easy to schedule, easy to count – we could send in our stats
just by taking x people times x days times x hours a day. Nobody ever asked us if the day program was accomplishing
anything beyond filling time. We tried really hard to be great at running a day program. But what kind of outcome is that?
Certainly not one that promotes neurodiversity! What we do now is HARD and yet we all love doing this work because
we are contributing in a real way to changing lives and changing our community.
38

This is a simple and yet highly effective tool for annual reviews with individuals and families, or for any sort of problem
solving at all. We used it as a staff team at our 2012 retreat and as individuals and as a collective, we came up with all
sorts of great ideas that saved the organization time and money.
39

We use these personal profiles with staff, volunteers, and members.
41

Sometimes non-profit organizations forget that there is more to partnerships than funding. For example, when the local
United Way Ottawa realigned their focus areas to include the employment of people with disabilities, we jumped at the
opportunity to work with them to communicate a positive message about people with intellectual disabilities in the
workforce. They used their substantial network to leverage all kinds of free public service message space, and in helping
deliver the message, we of course received the additional benefit of being seen as leaders in our field.
49

Because we have such a strong on-line presence many people are often shocked to find out that we are a relatively small
organization. We use Facebook not only as a public networking tool but also for a variety of internal communications
strategies. We have focused on Facebook, YouTube, and Twitter as our primary social media channels and are currently
growing our LinkedIn presence. Our leadership and entire staff team have an accessible public presence on social media
that has contributed to our reputation for transparency and accessibility. It has also ensured that we are attractive to
younger volunteers and staff (average age of staff team is 32 and average age of volunteers is in a similar range but also
includes many retirees – they like social media too!).
50

Whether trying to help one individual make a shift in their life, or looking to make a bigger change at the organizational
or systems level, it can all seem very daunting. But the best way to start is just to start. One small change leads to
another. Trying to script out the change in 500 page binder often creates nothing but a paperweight. Explore the benefits
of real-time strategic planning. This has helped our staff, board, and membership not only to make great decisions but to
be comfortable with a process of change that is driven by demonstrated needs that change over time – not by what the
binder says we are supposed to do next.
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Visiting the 9/11 Memorial and Survivor Tree in NYC

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