By Pat Fratangelo
Living and sharing life together is part of what makes each of us whole. Learning from, and taking care of another person through the triumphs and struggles of life is part of what helps to bind us together as we grow in relationships with one another. Life sharing is a term that is arising in our field and it is time to now begin to realize what this can mean for a person with a disability. People with disabilities have typically not had the opportunity to choose their home or lifestyle and often times have been placed into a living arrangement with other people who they do not know, nor do they care to live with. The system has traditionally offered only what was available, with little or no opportunity for another type of arrangement that is out of the norm.
As we begin to listen differently to what people actually want, we find that often times those coming for services do not want what has been normally offered. People are beginning to ask more and more for ordinary and regular lives in partnership with other community members. It is not that the person miraculously needs less support and that human service system is not necessary, the support just needs to be delivered in a very different manner, more creatively with community citizens in partnership in integral roles with those you are paid to support. It is this combination of supports and services that will enable the person to live more effectively and contently in the long haul.
Several years ago I was planning for a man who was not happy with his current life. He was living with a group of people that he called sick and he was supported by 24 hour staffing that he did not like. As we began to plan with him more deeply, we knew that what we were currently providing for him was not working. We needed to find another way. What we learned from him is that he did much better when he was with typical community people and that he had no desire to live with any person who he deemed to be sick. Because he was so distraught living within the group setting, staff often times needed to intervene, setting him up to be at odds with staff. As we began to walk further down this path of understanding, it was clear that he would need a lot of support but that it needed to be delivered in an entirely different manner. He wanted a more normal and ordinary life. He wanted to share his home and his life with people that he valued and who would value him in return. He wanted to be seen as a regular guy, to live with a regular guy and to do the things that regular guys do. He wanted what each of us wants. He deserved to live a gratifying life co-connected with others who he could share in mutual enjoyment with. We needed to open our minds and our hearts to another way of providing support to him. This led us down a different path as we began to recognize community people that he valued as regular guys who could enter into honest and valued relationships with this man.
What this man was teaching us was that there are many unique ways of providing services. He was pushing us towards a new path for how services could be delivered, helping us to realize our weakness; the facilitation of connections of the people we serve with typical community members in honest and productive relationships based upon each of their personal interests and aspirations. We were also caught up in delivering only what we had available and not necessarily what someone needed. He was helping us to fully realize the deep fundamental needs that were being neglected in the service delivery of the past, the profound importance of honest and fulfilling relationships between people. Our new focus was how to support a person to join in partnership with members from his or her community in honest and valuing ways.
The first of the essential tenants that we all must believe in, is that every person we support has an inner spirit core, although it may have never been recognized previously, it lies within. It is the task of each of us to discover what that inner core is all about and where that contribution may lie, even if it is not readily apparent. If we are successful with this then we will see the beauty of each person, allowing us to assist them in finding others who can enjoy that exquisiteness while working to nurture and enhance the magnificence that the person shares.
As we continued down the path of learning more about this man, we found
many interests that he had while growing up, that were now lost with his
life within the system. We also realized more and more the importance
of many of these experiences for this man. He truly valued working men
and saw himself as a working man, not a client of the system. Although
people say he cannot read, he could identify all construction trucks by
company names. We new he would not succeed in another traditionally staffed
arrangement, so we looked to the community to find a man out there who
could share this mans love of work and construction. Our goal was
to look for a man who could enter into a potential life sharing role,
sharing this mans dreams, his home and his life in a meaningful
way. Such a man was found and they have been sharing their lives together
now for over 12 years.
"The healthy social life is found when in the
mirror of each human soul
I was talking with a woman who is the non disabled housemate to someone that we support. She lives there freely as a companion and friend and is not in any paid or volunteer role. These two women have lived together over the last few years. Her housemate had been institutionalized and always supported through the system in very traditional services. Although her housemate is classified as severely intellectually disabled, this woman has become to know her as a very intelligent peer. They have a wonderful home and work together to share the responsibilities of not only their home but also their interdependent lives. As I was on the phone with her the other day, I realized that her role from teacher to learner had occurred. She tells me of the times they share in the gardening that they do and how much they both enjoy it. She also shared with me the times that they have had in growing together through times of struggle. She realizes now that her perceived role as this womans protector and teacher has changed, as she learns more and more each day with the person she thought could not teach her in return. As she has gotten to know her life sharing partner more fully she has learned much about her own self along the way. She remarked that she felt she was a part of such a wonderful arrangement, that her housemate was such a lovely person and that she felt so fortunate to have been brought together.
Stories like these should not be the exception. We had a state official come to visit us recently and she met these two particular women. When this state official came back to talk with me she said, She is a very lucky woman. Sharing a life with someone you value and respect should not be by chance or luck, it should be the norm. Just because you have a disability does not mean that you do not aspire to all the ordinary lifestyles and experiences that each of us take for granted. How did we get so far from normal and ordinary lives and relationships for people with disabilities?
We need to look at the changing the role of the human service system as we begin to facilitate and support more honest and valued roles between the people we are paid to support and common community citizens. It is all very possible, we just need to change our mindsets and our hearts, and find the inner core of each person that we support.
Published in the TASH Newsletter, Volume 32, Issue 9/10, September/October 2006, pages 7-8