A Community Life

• August 24th, 2007

When I began my employment at Hope House Foundation many years ago I remember how exciting it was to help people leave large state institutions and move in to 8 and 10 bed group homes in the community. In those days we were so focused on getting people out of terrible places that we never thought too very much what the community would be like, we just knew it would be better….and it was. Living with 8 or 10 people was better than living with a thousand, sharing a bedroom was better than living in a dorm with a 100 others and walking to the local neighborhood store was better than being segregated on a large campus. In those days I believed being in the community was better than being excluded from it and I still do. But it’s not good enough, being in the community is vastly different than being part of the community. That’s why we decided to close all our group homes and start community involvement with living in your own home versus a facility and it worked in so many positive ways but is still was not good enough. People we support wanted friendships and opportunities to work in real jobs and not sheltered workshops. They wanted to go to school, join clubs and pursue sports activities. They wanted to travel, go to dinner and a movie, and just goof around at the beach. What people wanted that we supported boiled down to what people tend to have when they are “part” of a community.

Last year a group of us came up with the idea to focus one position within each team at Hope House on that idea, people becoming part of the community and not just living in the community. We wanted the individuals within these roles to be creative, spontaneous and with a huge capacity to help individuals form networks of friends. We call this position the Community Support Coordinator but I think most folks that we support call them their dream champions. We at Hope House have been so pleased and quite frankly humbled by the incredible success of this effort as I think you can see from the stories in this newsletter.

I believe there is a place between excluded and included that many people with disabilities live within, I also believe Hope House is not one of them because we understand our work here is not just about good services and supports but finding your dreams and having them light up who you were always meant to be.

Rules of Engagement

• August 3rd, 2007

I like rules that make sense. Rules are good for me when they are simple and voluntarily agreed to by those expected to follow them. This of course is very different than laws and regulations which are typically established without input, conversation or the slightest involvement by those they most directly affect. Rules when looked at from an artist’s perspective involve light, from an astronomer’s the earth’s rotation and from the chemist’s the certain reactions of various components when mixed together. These rules guide and predict what will happen, and they don’t tend to change. When people say “rules should be broken” I think they are really talking about laws and regulations which as we all know constantly change and often times make no sense whatsoever.

We have a new law in Virginia that punishes traffic violators who reside in this grand state at a more costly level than those that don’t. Some people think this is downright discriminatory as well as short sighted in terms of addressing the issue. In the disability community almost all the laws and regulations are discriminatory and fail to address the real issues of poverty, unemployment, lack of inclusion and choice. Not following many of the regulations in this industry actually helps people with disabilities to have better lives…go figure, but don’t get caught.

My friend and I established some rules or maybe they are just guiding principals, it’s really semantics because our rules were made together in an effort to define our behavior towards one another and at the same time make sure we achieved certain outcomes. I like them, they are exciting, loving and communicate intentions and anticipation. Having a rule about communication that is honest and clear works for me, I like being able to expect that, hell even count on it.

Sometimes rules can be healing, like a bridge that transports me from one place to another, or adventurous like a promise of fun, no matter what. Nothing wrong with those kinds of rules in my book. Some rules are just plain manners or graciousness, I like those too. I guess the real test of a rule is its ultimate motive or what the rule should accomplish, when I make rules for myself like sitting up straight and working on my posture I rarely question the motive or test its integrity, yet when I establish rules with another person I suppose motive does come up, is this controlling or freeing, confining or releasing, supportive or selfish? With my friend I did not think of these factors, never entered my mind. I think that was because I trust him and when I trust someone those things just don’t take up any space in me. It’s just distant and hard to hear noise.

So maybe we need to dump the regulations that were made for people with disabilities and not with people with disabilities, maybe we need to establish rules between people with disabilities and those they trust and just maybe we need more rules that promise love, adventure and graciousness……now that’s something I could get behind, yep no doubt that’s me in a tree.