Life is complex...and simple at the same time. There is no one answer to the challenge that is "life". This is true for all of us, including people who face the challenges of living with "disabilities" that require different ways of thinking, seeing, and doing things, in a world that has been designed to exclude them, and in a "system" designed to maintain this separateness.
So when we hear that people "simply" want the same things that everyone else appear to have...a place called home; love, friendship, family; work that can sustain their lives and allow them to feel "productive"; a community where they "belong" and are valued for what they offer; and the opportunity to create this life through choices they make...what appears to be simple (as simple as any of our lives are simple), it quickly becomes apparent that creating this life is complex.
But this was the simple focus of folks in the Bronx( a mix of people from 8 Provider Agencies and the Bronx DDSO, including individuals--and family members--who receive services) ---figure out how people receiving services can live a life that they create, in collaboration, with people who rally around them for this purpose.
And when you get stuck...INVITE SOMEONE ELSE IN to figure it out with you.
So when we hear that people "simply" want the same things that everyone else appear to have...a place called home; love, friendship, family; work that can sustain their lives and allow them to feel "productive"; a community where they "belong" and are valued for what they offer; and the opportunity to create this life through choices they make...what appears to be simple (as simple as any of our lives are simple), it quickly becomes apparent that creating this life is complex.
But this was the simple focus of folks in the Bronx( a mix of people from 8 Provider Agencies and the Bronx DDSO, including individuals--and family members--who receive services) ---figure out how people receiving services can live a life that they create, in collaboration, with people who rally around them for this purpose.
- Figure out what we want to do...
- Figure out what needs to be done about it...
- Figure out what we CAN DO...and then DO IT
And when you get stuck...INVITE SOMEONE ELSE IN to figure it out with you.
So when we met with Beth Mount, and our friends from the Bronx DDSO (Patty Schuckle, Josie, and Herminia) and were in conversation with some of the folks from the NY State Office for People With Developmental Disabilities, we wanted to find a way to share what we have been learning from our dynamic learning community in the Bronx.
Some clues to the dynamism of this group of folks who really feel like they are making a difference together are:
Get the RIGHT MIX OF PEOPLE in the room: If we want things to be different, we need to think about who will be involved in making this difference, and get them in the room thinking and planning with us. This is work, and it requires conscious planning. In our case, Patty Schuckle, with her crew at the Bronx DDSO, and Beth Mount, thought about who should be in the room with us. They knew that we needed to have folks who receive services involved (including the people who love them); people who provide daily support to folks; and people who have decision making authority and/or influence in the agencies that provide support and resources. And then they needed to make a compelling invitation that was clear and enticing enough to get people to show up. Getting the right people in the room is work, and it involves skill, passion, and personality. Patty Schuckle and the DDSO crew have all three, and they made this happen.
SEE and HEAR...Possibilities and Future Visions of Life Worth Creating: To create anything, we have to be able to imagine what we want to create..we have to be able to SEE. But our ability to imagine the future is built upon what we have seen in the past, and too often for folks who live with disabilities and the people who serve and support them, we have seen separation, neediness, barriers, "dis"ability, and it shapes what we can imagine. So one of the things we need to do is practice seeing possibility and a future worth creating.And so Patti Scott brought real life experiences and stories of people who have created lives of their choosing, making home, work, friends and connections in community. Showing and sharing stories primes our brains to be able to imagine. It is built on creating new pictures in our heads ...if someone else has been able to do it, then it begs the question "why can't we?"...and we start to be able to imagine our own possibilities of a future worth creating. Dave Hasbury introduced the group to the practice of drawing what you want to create, and each person who received services gathered the people who support them to listen to what they would like to create in their lives, and it was drawn for all to see. This picture created then served as the base for all of the planning that followed. And over the months that followed we continued to find ways to share stories that fuel our imaginations -- people would go on "learning journeys", to see people where they live and and work, in NJ and in other places in the Bronx. We continued to make room for stories to be seen and heard each time we gathered. We invited Tyrone Towers who lives in his own condo in Hackensack NJ, where he is a neighbor and condo association member; has gone to college and receieved his G.E.D.; participates as a member of his church; sells Avon in his neighborhood; travels as a speaker and consultant; and receives support through Neighbours Inc..
PLAN and DO...CAN DO Actions: Things don't "just happen"...we can make things happen... if we decide to. It is so easy to have our eyes set on all of the barriers. Our approach was not have people avoid barriers, but rather look at what you CAN DO, no matter what the barriers are. There is always something that you can do. And then we asked people to create a plan to DO what they CAN. We simply wanted to maximize the possibility that people would do what they can, and create movement and new experiences as a result. Baby steps are OK. Baby steps are way better than no movement. Baby steps generate confidence, and a sense of power that comes from the accomplishment of imagining and then doing something about it.
REFLECTon Experience: The beauty of our experience in the Bronx has been that people "imagine possibilities", plan to do something about it, go off and do it, and then commit to coming back together to share and reflect on: what happened?; what does this tell us?; what did we learn by doing this?; what can we try to do next?; who else do we need to get involved?. And as we do this we are creating new stories that we can show and tell, and this fuels the imagination about possibilities even further because it is so much closer to home. There are resources we discover, and in fact we begin to become resources to each other.
And when we have gone through this cycle, we head off and do it all again. The individual stories shape the organization stories, and these organization stories influence the state system story. Our collective story emerges, and it is a story of transformation fueled by the power of individual visions of what is possible and desirable.
Our role, is to create the space for this story to emerge and grow, in which the highest potential for doing the right thing for and with people is encouraged and celebrated; to create a framework for dialogue and learning that allows people to "discover"; to infuse new stories as needed; to facilitate a process of discovery for each group and our collective; and to "make sense" of what is being learned.
And it is important to know that as we create the space in our gatherings, others are creating the space within their agency spheres of influence for people to do the right thing.
Within each story there is much complexity, but at its root we are simply living a story that we are creating.
Some clues to the dynamism of this group of folks who really feel like they are making a difference together are:
Get the RIGHT MIX OF PEOPLE in the room: If we want things to be different, we need to think about who will be involved in making this difference, and get them in the room thinking and planning with us. This is work, and it requires conscious planning. In our case, Patty Schuckle, with her crew at the Bronx DDSO, and Beth Mount, thought about who should be in the room with us. They knew that we needed to have folks who receive services involved (including the people who love them); people who provide daily support to folks; and people who have decision making authority and/or influence in the agencies that provide support and resources. And then they needed to make a compelling invitation that was clear and enticing enough to get people to show up. Getting the right people in the room is work, and it involves skill, passion, and personality. Patty Schuckle and the DDSO crew have all three, and they made this happen.
SEE and HEAR...Possibilities and Future Visions of Life Worth Creating: To create anything, we have to be able to imagine what we want to create..we have to be able to SEE. But our ability to imagine the future is built upon what we have seen in the past, and too often for folks who live with disabilities and the people who serve and support them, we have seen separation, neediness, barriers, "dis"ability, and it shapes what we can imagine. So one of the things we need to do is practice seeing possibility and a future worth creating.And so Patti Scott brought real life experiences and stories of people who have created lives of their choosing, making home, work, friends and connections in community. Showing and sharing stories primes our brains to be able to imagine. It is built on creating new pictures in our heads ...if someone else has been able to do it, then it begs the question "why can't we?"...and we start to be able to imagine our own possibilities of a future worth creating. Dave Hasbury introduced the group to the practice of drawing what you want to create, and each person who received services gathered the people who support them to listen to what they would like to create in their lives, and it was drawn for all to see. This picture created then served as the base for all of the planning that followed. And over the months that followed we continued to find ways to share stories that fuel our imaginations -- people would go on "learning journeys", to see people where they live and and work, in NJ and in other places in the Bronx. We continued to make room for stories to be seen and heard each time we gathered. We invited Tyrone Towers who lives in his own condo in Hackensack NJ, where he is a neighbor and condo association member; has gone to college and receieved his G.E.D.; participates as a member of his church; sells Avon in his neighborhood; travels as a speaker and consultant; and receives support through Neighbours Inc..
PLAN and DO...CAN DO Actions: Things don't "just happen"...we can make things happen... if we decide to. It is so easy to have our eyes set on all of the barriers. Our approach was not have people avoid barriers, but rather look at what you CAN DO, no matter what the barriers are. There is always something that you can do. And then we asked people to create a plan to DO what they CAN. We simply wanted to maximize the possibility that people would do what they can, and create movement and new experiences as a result. Baby steps are OK. Baby steps are way better than no movement. Baby steps generate confidence, and a sense of power that comes from the accomplishment of imagining and then doing something about it.
REFLECTon Experience: The beauty of our experience in the Bronx has been that people "imagine possibilities", plan to do something about it, go off and do it, and then commit to coming back together to share and reflect on: what happened?; what does this tell us?; what did we learn by doing this?; what can we try to do next?; who else do we need to get involved?. And as we do this we are creating new stories that we can show and tell, and this fuels the imagination about possibilities even further because it is so much closer to home. There are resources we discover, and in fact we begin to become resources to each other.
And when we have gone through this cycle, we head off and do it all again. The individual stories shape the organization stories, and these organization stories influence the state system story. Our collective story emerges, and it is a story of transformation fueled by the power of individual visions of what is possible and desirable.
Our role, is to create the space for this story to emerge and grow, in which the highest potential for doing the right thing for and with people is encouraged and celebrated; to create a framework for dialogue and learning that allows people to "discover"; to infuse new stories as needed; to facilitate a process of discovery for each group and our collective; and to "make sense" of what is being learned.
And it is important to know that as we create the space in our gatherings, others are creating the space within their agency spheres of influence for people to do the right thing.
Within each story there is much complexity, but at its root we are simply living a story that we are creating.
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