some reflections on 20 years: the world i never knew, the world i want to see

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Keenan Wellar, MA and Julie Kingstone, MEd Co-Founders & Co-Leaders, LiveWorkPlay.ca Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens Some Reflections On 20 Years The World I Never Knew The World I Want To See Presentation to Rotary Club of West Ottawa June 10, 2014 Keenan Wellar

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Presentation to the Rotary Club of West Ottawa. The purpose was to sketch the history of services and supports for people with intellectual disability and put a local as well as human face on developments and problems.

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Page 1: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

Keenan Wellar, MA and Julie Kingstone, MEdCo-Founders & Co-Leaders, LiveWorkPlay.ca

Helping the community welcome people with intellectual disabilities to live, work, and play as valued citizens

Some Reflections On 20 YearsThe World I Never KnewThe World I Want To See

Presentation toRotary Club of West Ottawa

June 10, 2014

Keenan Wellar

Page 2: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

What’s Keenan talking about anyway?I’m not sure, just keep smiling and he’ll probably explain the history.

Page 3: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

I get asked often “How did you end up in this career.” Quite honestly, it was an accident. I applied for a job thinking that a “developmental disability” had to do with coming from a low-income family. Nevertheless, I got the job. At the age of 21 it was the first time in my life meeting a person who had Down syndrome, autism, or other intellectual disability labels.

Getting to know these individuals and their families, it struck me that something was going very wrong in our community that it took an accident for me to have this experience of meeting people who had so much to offer, and yet due to these labels were being largely hidden away from the rest of the city.

Some 6 years later my future wife and I formed what became LiveWorkPlay, and 2 years after that we suddenly found ourselves making the big change from volunteer advocates to a full-time calling.

Page 4: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

A Brief History of People with Intellectual Disabilities in Ontario

In 1876, Ontario opened its first institution for people with a intellectual disabilities on the outskirts of Orillia. It was named the Orillia Asylum for

idiots and at one time was home to about 2600 people.

The name was changed many times (final name: Huronia Regional Centre) but this and two similar institutions in Smiths Falls and Chatham-Kent did not close their doors completely until 2009Ontario apologized to survivors of these institutions in 2014.

Page 5: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

When we get innovative in human services, sometimes we end up with the equivalent of a car with square wheels!

Page 6: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

By the 1950s family-led groups were refusing institutions for their children and demanding a different approach. Institutional populations peaked in Ontario in 1974 in response to this

movement for services based on a social model rather than a medical model of disability. In other words, the barriers to an included life in the community are not sourced

in the individual, but rather in society, which needs to change.

The initial response to this was mainly to create smaller forms of institutions, which represented an improvement in geography, as they tended to be located within other

human populations in urban areas, and this at least made possible some crossover with the rest of the population. These facilities also offered at least a measure of greater flexibility

and individual attention than institutions with 3000 people in them. Relatively huge sources of federal and provincial funding in the 1970s created theseFacilities across the province, many of which are still in use today.

Over the past 40 years, progress has been beyond slow. Some would say glacial.

Page 7: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

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.

Page 8: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See
Page 9: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

So why should people with intellectual disabilities

all live together?

(Adapted from hope-house.org)

Page 10: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

Fear not, it’s the new millennium! New catchphrases are here!

• Person-Centred Planning• Individualized Supports

Sometimes we are the doctors of hypocrisy…

Page 11: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

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

Now, let me start by outlining the list of fixed choices available to you!

Page 12: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

Remediating Accommodating ValuingNEURODIVERSITY

Page 13: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See
Page 14: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

THEN NOW

The way our Developmental Service system often responds to a person like Royce (who was trying to pursue his fundamental human need for freedom) is through increasingly

restricting and medicalizing those needs as “behaviours.” This approach tends to feed on itself by creating an even stronger desire for freedom, and more challenging behaviours.

The Royce in the paper is not the Royce that is known to his co-workers and neighbours!

Page 15: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

“THIS IS TUESDAY NIGHT LEAGUE BOWLING. PLEASE COME BACK ON THURSDAY NIGHT AND SIGN UP FOR SPECIAL NEEDS BOWLING.”

Chris (centre) had been rejected at many athletic venues, including some designed specifically for “special” people. Now he is on a soccer team as part of Ottawa Rec

Sports where he is welcomed and appreciated as a soccer play. The only thing “special” he is known for is his ability as a long striker!

Page 16: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

20 years ago: “Matt will never walk or talk”2 years ago: “Matt will never have paid employment”

Want to bet against Matt again?

Page 17: Some Reflections On 20 Years: The World I Never Knew, The World I Want To See

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Flourishing In Community“BE THE CHANGE”