Here in Illinois, Governor Quinn has been pushing hard to close state institutions for people with developmental disabilities, along with some prisons and state mental hospitals. There are a handful of these complexes scattered around small towns all over the state. Like prisons, these institutions are a major source of jobs and revenue for otherwise economically depressed communities. Doctors, for a long time, would push parents into sending their children to these places, assuring them that it was the best place for them. Sometimes, children would never even get to go home with their mothers; they would just go straight to the institution. Across the country, huge facilities were built to house these individuals and care for them. Over the last 40 years or so these institutions have been closing around the country. Illinois has some of the last institutions still in operation. Some of them have closed due to abuse and wrongful death suits that have been brought against the state.
My sister was born in 1986 with Down Syndrome. If she had been born in the 50's or 60's she could have easily ended up in an institution but thankfully my mom and dad wanted to give her all the opportunities they could. I was born two years later. Having my sister in my family has been a huge blessing and I can't imagine her having any other life than the one she has lived. My mom has worked hard to make sure that Bridget was fully included in all of her academics through high school and now has a full adult life. My mom has also used what she has learned to help other families and people with disabilities gain greater acceptance in schools. As the state was putting together a team to help people transition out of the institutions into community based support systems, they called my mom to help facilitate person centered plans. I was lucky enough to help with this process the last few weeks. We drove down to Jacksonville, IL to meet with a number of individuals with disabilities and their staff support team.
Each person was different and each brought with them their own challenges and gifts. Some of them had significant language challenges and behavior problems that were hard to navigate. Some were capable of a relatively normal life with a job, social life, and real community. The major aspect of the person center planning process is dreaming. This is what seemed to be the most difficult part of the institutional environment. As much as these people were cared for and even happy to some extent, they had very few dreams for themselves and the only people in their lives were paid to be there and so no one had aspirations for these people beyond the most basic care. My mom and I had to stretch ourselves to think of dreams for these people we didn't even know. These individuals had been cut off from their families and natural relationships and put into a clinical environment that lacked the kind of creativity, which can only come from genuine relationships.
The experience has made me reflect on how important community is to human dignity and fulfillment. One of the most attractive aspects of organized religions is their capacity for community. When talking to these individuals about what they want out of life, participation is a faith community was a common desire. I've known many people with disabilities who have found strength and acceptance in their faith communities. My sister reads the bible more than anyone else I know. She always asks me about different characters and stories that shes been reading and I don't always know the passages she is referring to. She is someone that takes her faith seriously and yet our home parish has no program to support her and so she attends a bible study at another church. Christian congregations generally don't have a good grasp on how to incorporate people with disabilities. The bible study that my sister goes to is a special group, only for people with developmental delays and cognitive disabilities. There are a lot of programs out there with similar models. The problem is that they simply create a separate but equal kind of system where people with disabilities have to participate in a parallel congregation. I haven't seen any programs that have really incorporated people with disabilities in to the main parish programming.
The one exceptional model is that of the L'arche community. This is a movement that started in Canada when a man named Jean Vanier invited two people with disabilities into his home. The mission of L'arche is to create a relational based support system for people with disabilities. For those individuals who have spent their lives in state institutions, life have been a series of diagnoses and technical relationships that are really just maintaining life. What L'arche does is change the nature of those relationships so that the individuals with disabilities are given the opportunity to grow, change, and develop real adult relationships that are built on a mutuality between caregiver and care receiver. The housemates all participate in making the community better and they all share their lives and faith. Though traditionally a Christian organization, the L'arche community here in Chicago has recently accepted its first Jewish resident. I was blessed to be able to attend their first interfaith Seder. What was remarkable was the depth of understanding and the profound dialogue that was happening between these people who have varying levels of cognitive aptitude. As faith communities, it is our duty to embrace the most vulnerable members of society. This is why there are so many programs that try to serve the mentally challenged but what really needs to happen is a shift in attitude. It's not enough for a congregation to minister to people with disabilities; we need to create an environment where individuals with disabilities are encouraged and welcome to minister to their congregation in a fully inclusive and respectful way. As these individuals move out of state institutions, I hope that their faith communities will be able to welcome them into the fullness of religious experience.
This image, of a person unrelated to me, was accessed by way of Creative Commons, in accordance with specifications from Google Image results, designating this as a photo "labeled for commercial reuse with modification."