The Arcadia Institute

Making it possible for people with disabilities to be welcomed, supported and respected in their community

Entries for April 2012

Parents as Advocates or Roadblocks to Inclusion?

The blog this week was written by George Martin, President of the Arcadia Institute.

In the long and winding road toward full community participation parents of people with disabilities have often been champions. At times they have also blocked the path their son or daughter could have taken to be included in community life.

The history has many stories of parents who have fought hard, for instance, to keep large scale state institutions open. Some of my most difficult moments as a professional have been during those moments when I have sat across the table to face a parent who was angry at me because I was working to close down the institution in Coldwater. (I have also felt physically threatened by a school teacher after I gave a presentation one night in Berrien County advocating for inclusion in schools.)

I still have vivid memories of a day when I had asked a delegation of state officials and legislators to visit a segregated skill nursing home and was told by a group of parents that we could not come into the building.

What I also remember, however, was a day when one of those same parents came into office months later to tell me how thrilled that her daughter was doing so well since she had moved out of that same nursing home. She went on and on marveling at all that her daughter was learning to do that she never thought she would learn.

So, yes, I have seen parents become roadblocks to community, but I have also seen some of those same parents become strong supporters for community versus institutional life. I believe that parents who have a child with a disability have reason to hold the highest expectations for their sons and daughters. I also understand that they may limit their freedom because they have a fear of letting go and running the risk of hurt. This issue was one I faced when I became a professional in this field in 1975 and one I witness today.

The encouraging news is that every day we move further along the road to community.

George T. Martin
President

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Why Should We Have to Make a Case for People With Disabilities to be Full Participants in Their Community?

The blog this week was written by George Martin, President of The Arcadia Insitute.

The short answer to our title question is that we shouldn’t. After all, one of our sacred founding documents, the Declaration of Independence, establishes the basic equality and standing of all of us as citizens. The right to be here is more fundamental than a statute. It is ours by the natural order of things.

Why, then, do we have to argue for the place that people with disabilities have among us? The answer is that we do not have to make that argument. That right has already been declared by the founders of our nation. Our job as people with disabilities and agents acting on their behalf is simply to step into our assured place.

Now to be sure, there is still some debris to clear away. Schools still separate, and thereby subordinate, people according to disability. We place people with disabilities in places set apart for them to live. We establish different places for them to work than the rest of us. We still maintain separate recreational programs. Even with our best efforts, we are often several steps away from the rightful place for people with disabilities to stand.

Going forward, however, let us act on the assumption that that Declaration affirmed a long time ago and reaffirms every time we as a country recite what is fundamental to our creeds. At this time we are not only working to prepare people with disabilities to live, work and play among us. Now we must also be about the task of working as a community to make their pathway to full participation easier to walk.

In our Community Participation Initiative we have been working for some five years with community agencies that serve all people. Not only have they been responding to the invitation to include people with disabilities, but they have also become leaders in the Initiative in their own right.

The Sisterhood Group

Geraldine is a woman who loves to be with other people – particularly other women her age. While Geraldine has family who include her in activities and she goes frequently to the library, she really wanted to get to know other women.

We learned that Geraldine was interested in becoming a member of the Portage Senior Center. Then we discovered that there is a group of women who call themselves the Sisterhood Group. This group meets once per month to socialize, do crafts, watch movies or go out to lunch. Geraldine agreed to visit the group to see if she might want to join. We also reached out to the group leader to help her learn how to support Geraldine who can become very anxious in new places. The first couple of times Geraldine attended she did not stay the whole time.

Then, the Sisterhood Group decided to have a “show and tell” meeting. Members could share what ever they wanted – a new project, a book, or something about themselves. Geraldine and her community living support staff shared her story. This seemed to be a turning point. Through telling her story, Geraldine was able to strengthen her connection to the other Sisterhood members.

At one of the last meetings, the Sisterhood Group went to lunch at a restaurant. Geraldine was nervous about going to a restaurant, but she went and with the support of her new friends she had a wonderful time.

As John McKnight said, “We can’t find friends for other people, but we can help them have as many opportunities as possible to be out in the community, spending time with other people.”

Connectors

The blog this week is by George Martin, President of The Arcadia Institute

In his book, The Tipping Point, Malcolm Gladwell identified a distinct group of people he called ‘connector’, people who are important links in chains of communication.

Connectors are people who just seem to be in touch with many other people. They are great conduits for passing along information and bringing people together, if not always physically, then in conversation.

Connectors can be highly important in the lives of people with disabilities as they seek to establish meaningful relationships and become participants in their community.

Who are the people you identify as connectors? How are they part of your conversation chain? How might they become more building community for people with disabilities?

We would like to hear your views.

Paper Chain