"The quantity of a life is a tangible. The quality of life is less distinct." (excerpt from article on Brian Tuttle's death, author unknown)
Brian's House is a residential home co-founded by David and Nancy Tuttle. It was a home for their son Brian who had a developmental disability that left him unable to speak. He did not develop past the age of a 6 month old. He could not sit up without assistance. He could not feed himself and only lived to age 19. Brian's House was a home for the Tuttle's son, but it was also a vision for a better way of life for others with developmental disabilities. In a time when people with disabilities were locked away from society, warehoused in institutions where an unfathomable existence defined their lives, the Tuttles wanted a different life for their son. Deemed unfit to be cared for at home, uneducable, unemployable, and burdens on the community and families, people with disabilities were sent away to be kept out of sight and forgotten in large institutions. The Tuttle's vision for a real home for Brian and others with disabilities was realized in 1978 when Brian's House opened its doors.
Brian's House is currently home to eleven residents with severe developmental and physical disabilities. On a gorgeous autumn, day three friends and I took a scenic drive through picturesque Pennsylvania. The foliage was at peak and the explosion of red, gold, and purple was right out of a book. We made small talk and took our time exiting the car once we arrived. We were early for our appointment to meet with Christine who has been working at Brian's House for 10 years and we were all nervous.
I'm not sure what I expected to see inside those walls. Images of institutions like Willowbrook came to mind, though I knew times had changed, at least in this country. I had never been in such a place and a knot of fear gripped my stomach. I was afraid of what I would see and smell. I was afraid to learn things about myself that I didn't want to know.
We met Christine at the back door. Although it was her day off, she was happy to make the drive and give us a tour. We entered near the kitchen where a staff member was cleaning up breakfast. I was surprised that the house smelled like syrup. I guess I was expecting a mixture of bleach and human waste. I quickly took notice of a resident who was in the kitchen. She moved around by crouching down low with bent legs and did not speak.
Christine showed us around the house and introduced us to the residents who were all in the large living room in front of a television. Some residents were in wheelchairs. Others were on sofas or chairs. We were introduced to all of the people, but there were a few that stood out for me. A young woman who used a wheelchair had her hair and makeup done. Christine later explained that it was a requirement. She liked to look good so the staff made her up every day. A young man was on the floor and later moved to the couch. He was self soothing by inserting his entire fist into his mouth. When he removed his hand I could see that his skin was chapped and his cheeks were permanently stretched out. I'm not sure, but I think our visit upset him. As Christine explained how she came to be involved in Brian's House I noticed another young woman who spent a great deal of time wandering around. To me, she looked as if she were lost or needed assistance but Christine assured us that she was fine.
As we were headed from a rec room to the bedroom areas, one of the residents began wailing. It was a long, shrill, mournful sound that hit me right in the back of my spine. In all honesty, it frightened me and I had the urge to run. As we passed through the hall we noticed a grouping of photos. Christine explained that it was their wall of angels. The pictures were of residents that had passed away and Brian Tuttle's picture was in the middle.
After our tour we met a nurse who was pleasant and cordial. Christine had only explained that we were doing the tour as a requirement for a class. However, when we told her that we all had children with developmental disabilities and that our class was to teach us to be the best possible advocates for our children, her whole demeanor changed. She explained that they resisted the label "institution." For them the residents of Brian's House are family and the house is their home.
My homework was to write about my experience and impressions of the facility. Instead when I returned home I chose to hold Sophia tight and bury it. I'm still processing what I saw that day. Yes, it felt like a home and not an institution. Yes, the staff appeared to love their residents which was very encouraging. It was really clean with fun artwork on the walls. They even have an indoor pool. However, it was my response to the people that I haven't wanted to think about. I felt so blessed to have Sophie just as she is and then immediately felt guilt for being grateful that my children are not living with such severe disabilities.
My feelings are complex and don't necessarily make sense, even to myself. Sometimes I think about returning as a volunteer. When I looked into the eyes of the residents (the ones that would allow that) I saw living souls. I saw life with value. I saw love. So my fear and level of discomfort have really rattled my cage. I realize that I still have a lot of work to do and I am so grateful to my daughter Sophia for opening up a whole new world to me.
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