Ontario Adult Autism Research and Support Network - OAARSN

Ontario Adult Autism Research and Support Network

OAARSN offers information and communication tools to connect adults with Autism, family members, caregivers, friends, support workers, teachers, administrators and policymakers. We can all benefit from the opportunities for mutual support and encouragement and the sharing of knowledge and experience. Our efforts to promote positive approaches and best practices in supporting adults with Autism can help all who live and work on the front lines.

Inclusive Ideals: Wise Words Awaiting Action

How can we make the world a better and more inclusive place for people who live with differences, visible or invisible, that can make them vulnerable? Idealists and visionaries can inspire us to see better ways. Satirists can prompt us to see the weaknesses and inequities of existing supports. The perceptions of those who speak from lived experience of disability are especially valuable. It can take a long time for these wise words to be heeded. The examples chosen here were composed at least 20 years ago but are far from being realized.

We are open to posting more wise words. Send us your suggestions.

Community is not a place but a way of life: Learning to Listen

The following is taken from a speech by Herbert Lovett in Dallas, May 1996. OAARSN posted it in mid-2002 and also a review of his 1996 book that speaks to everyone concerned with abilities and inclusion. Herb Lovett died in an auto accident in March 1998. Here is a link to our OAARSN book review by Heidi Klaming

We are in the beginning of a liberation movement, where people are freed from being told that rights are privileges. 

• Rights are not privileges. People with difficult behavior are constantly being told they have to earn their way to community. But it is everybody’s right. 

• Community is not a place but a way of life. 

• Community means you choose where you live, with whom and what you do with your life. 

• You do not earn your way into ordinary schools. 

• You do not prove yourself ready to a team for the job you want. You apply to your employer and start working. 

• You do not prove to a team that you’re ready to have a home of your own. You live in one. 

• You should not have to be charming to get the help you need. 

But we have people all the time having to prove they are good enough. And that is just wrong. And whose behavior is difficult behavior? 

• When someone spends all day working and they get a meaningless treat at the end of it, who is behaving badly? 

• When someone gets to earn a trip to the mall for not annoying people, who is being manipulative? 

• When someone gets ignored for being inappropriate or is sent off alone or is kept isolated, who is behaving antisocially? 

• When someone gets tied down or is drugged up, who is behaving aggressively? 

• When people get routinely physically restrained, whose behavior is out of control? 

• When people are kept apart from what they enjoy doing, apart from the places they want to go, and apart from the people they want to be with, whose behavior is antisocial? 

• And when people keep doing the same meaningless rehabilitation exercises year after year or keep the same behavior plan year after year and nothing good changes for the person, who is slow to learn and fails to profit from experience? 

People with severe reputations are our teachers if we are wise enough to learn from them. Their behavior — protests and civil disobedience if you like — are often telling us: 

• You are not giving me the help I need 

• You are hurting me 

• Your ideas may be good but your actions aren’t 

• You can do better. 

Community is not about therapy, though we can all grow in it.  If we listen to people and heed what they are telling us, not just with their words but with their actions as well, we temporarily able-bodied can grow past our difficult behavior and become honorable members of community as well. 

Leading with a Quiet Voice by Judith Snow of Toronto, 2001

“What does it mean for us — as people who are called disabled — to be leaders in our own lives, in our communities and as advocates?”

The Quiet Voice: Click here to download the PDF

Click here to read a message from Judith Snow.

Individualized Approaches to Supporting People with Disabilities 

During the 1990s, individualized funding based on self-determination became a focal goal of the worldwide disability movement. Individualized funding is now recognized as a fundamental requirement for self-determination, enabling people to purchase, and therefore gain control over, the supports needed to enjoy meaningful lives in the community.

Individualized funding refers to the way in which dollars are provided to allow the purchase of disability-related goods and services, including technical aids and equipment, homemaker assistance, attendant care, and respite services which provide some relief for caregivers. These disability supports are distinguished from the income supports or social assistance paid to people who cannot earn their basic living costs such as rent, food, and clothing. Funding is based on the needs of the individual (as determined by an assessment in which the person takes part); dollars are paid directly to the individual; and dollars are portable across jurisdictions (and can be moved from one place to another with the individual).

Individualized funding means much more than a system of accounting. The approach has been described as the way to turn clients into citizens.

Beyond Programs: A Parable describes the difference between traditional and individualized approaches to supporting people with disabilities.

In the beginning, there was placement, and lo we were happy when it happened, as placement was not mandated for adults who experience severe disabilities. And so, we said, this is good. 

In the beginning, there was placement, and lo we were happy when it happened, as placement was not mandated for adults who experience severe disabilities. And so, we said, this is good. 

And placements multiplied and filled the earth. 

And then we said, let us make programs, which focus on serving clients. And clients were defined and labeled, and grouped according to their labels. And programs created services for each label, and agencies developed unit costs for each service. And programs prospered and multiplied, and we said, this is very good. 

And as programs multiplied, a cry arose: Let us evaluate these programs to see how good they really are. 

And program evaluation, regulations, quality assurance compliance plans and other program measures were created. And they multiplied and filled volumes. 

And in those times, a person arose who was a client and who was also a prophet, and said: 

“I don’t want to be a client. I want to be a person. 

I don’t want a label. I want a name. 

I don’t want services. I want support and help. 

I don’t want residential placement. I want a home. 

I don’t want a day program. I want to do meaningful productive things. 

I don’t want to be “programmed” all my life. I want to learn to do the things I like, and go places which I like. 

I want to have fun, to enjoy life and have friends. 

I want the same opportunities as all of you: I want to be happy.” 

And there was a long silence. And lo, everyone realized that they must look beyond their programs. 

But they were troubled and they asked: 

“How can we do this? Would not each person need his own unique program and system of support and his own individual measure of quality?” 

And the prophet replied: 

“Even as you say, so shall it be done–just as you do for yourselves.” 

-Michael McCarthy; reproduced from Contact, Sept/Oct 1991

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Please note that OAARSN provides resources for information purposes only. We do not endorse any treatment, program, product or service. The contents of this website are not medical, legal, technical or therapeutic advice. Information should be reviewed with qualified professionals. We will not be held responsible for misuse of information or for any adverse effects of recommendations mentioned on this website or on any other websites linked to it. Views, opinions or announcements posted by subscribers to any area of this site do not necessarily reflect those of OAARSN and we do not assume responsibility for any discrepancies or errors.