In Memory of Tim Bartlett
December 9, 1960- April 21, 2007
In April The Arc lost one of its most influential members. Tim Bartlett died on Saturday, April 21, 2007. He had been in the hospital for a little over a week and in that short time, he was still able to teach, comfort and live his life to the fullest.
Tim was born with a rare condition that should have prevented him from ever walking or talking. Anyone who ever met Tim can testify that he certainly could walk and talk. The simple acts of walking and talking reminds us that anything really is possible. Some people say that Tim’s life is a miracle. Others say it is a result of the hard work and tenacity of Tim and his family. Still others say it reminds us that we really don’t know all there is to know about how the human body works – it leads us to continue to try to learn and explore. Tim is currently at The University of Michigan, allowing researchers and medical students to continue to learn from him.
Tim was labeled as a person with a significant intellectual disability. He even attended school in a trainable mentally impaired classroom. Tim taught us all that it does not matter what traditional IQ labeling tells us, all human beings can and should make decisions about their own lives. From the time I met Tim, it was clear that he knew what he wanted and he was determined to get it. Tim was a master of finding allies who would help him to achieve his goals and get his needs met. Even on rare occasions when he and his mom would disagree, Tim knew who he could enlist to help him advance his position. Tim did not need a guardian to look out for his needs, he needed his allies – the people who knew and loved him. He taught everyone who knew him to listen more closely and to respect what people with disabilities are telling us. He told his sisters and brother when it was time for him to go.
In 1988, Community Mental Health found that Tim was eligible for the “highest level” of support that they had to offer. Art Letourneau told Myrna that Tim would be able to live in a 24 hour staffed group home or in adult foster care. Tim, Myrna and Ed said, “no thanks”. Tim had a vision for his life. He wanted to live in a house in the neighborhood where he grew up, he wanted to go to college, he wanted to have a good job, he wanted to have a car and he wanted to have friends and have fun. Tim and his family felt that you most certainly could only do those things if you were part of a community. Tim showed us that you could be safe and have the help you need without losing control of your life. He showed us that he could have his own home and take good care of it, with a little help from his friends. He showed us that he could be safe and have people near by to help him with things he needs help with, without having to pay someone 24/7. He reminded us that he is really no different from anyone else in his need for help and companionship and that we all get and give help in different ways.
Tim’s need for housing support gave birth to the expansion of the Reece Community Living Endeavor. The organization had three group homes prior to Tim’s request that they purchase a home specifically for him to live in and control. Now the Reece Endeavor owns 34 homes.
Tim pioneered the use of Adult Home Help funds for people with developmental disabilities. By using home help dollars, Tim was able to decide who would help him and when. This very flexible funding source is widely used by people with disabilities all over Michigan today. In Midland alone, hundreds of people with disabilities receive needed supports using this program.
Tim’s desire to “be the boss” spawned the birth of Personal Assistance Options and the notion that people with disabilities can hire and employ their own staff. Today Personal Assistance Options helps over 175 people with disabilities control their lives by providing staff who work when and how the each person desires. In addition, the option of hiring staff directly is available to all citizens and more and more people are using this option.
I still remember the day Tim came into my office took me by the hand and sang a line from a famous country song, “Take this job and shove it”. It was an example of Tim’s great sense of humor and his way to tell us all that people with disabilities can be entrepreneurs. Tim was starting his business, which by the way, continues to make money even after his death (I had ordered some facilitation kits from him before his final illness). Today there are more than 30 individuals who have businesses ranging from hobbies that pay a few dollars to full time enterprises. Again, Tim has helped to establish the culture of people with disabilities contributing to their own economic futures and the economy of the community.
All to often non-profit organizations ask the community for help on behalf of “poor unfortunate” individuals in need. Tim helped to teach our community that he was not a poor unfortunate person, nor were other people with disabilities. Tim was known for his political activism. Tim might even claim that Dave Camp won his early elections because of Tim’s support! You certainly could not show up at his annual Election Day party without your “I voted” sticker on your lapel. Tim actually had a list of people that he called to remind them to vote on every single election. Tim helped to promote our democracy.
Tim was also known for his strong belief in prayer. Whenever Tim was at a gathering, he asked the group to pray. He never prayed for himself, he always prayed for others. If you believe in the power of prayer, then you know that Tim helped countless people with his prayers.
Tim helped raise money for others. He never thought that he was part of any group that needed charity. He helped to teach us all that everyone has a contribution to make and that people with disabilities are not to be pitied or “helped”, but people to be respected and included.
Some of Tim’s other contributions include, providing several people an opportunity to live in his beautiful home over the years. He has had college students, people traveling to Midland for Dow Chemical and people who are in transition in their lives. Every person who ever lived with Tim expressed their feeling that living with Tim was more beneficial to them than to Tim.
Tim was very loyal and helpful to his friends. For years, he helped a neighbor with their pet. He took care of his roommate’s pets. He called me every time there was a snowstorm to make sure that my son was safe. He let us know when there was a tornado watch and when school was closed. He hosted great parties. He provided a great job for many staff over the years.
Tim represented his parents at community gatherings every winter when they traveled south. He went to Arc events, parties, funerals and weddings. He was a dutiful son and represented his family well.
As I reflect on all of the contributions that Tim made to my life and to the lives of people who have disabilities and people who care about people with disabilities, I remember a funeral that I went to early in my career. It was for a young man who had lived in the group home where I worked. During the last hours of his life, a few co-workers and I were the only people at the hospital with him. His funeral had very few people present and most family members who were there, sadly, did not really know their family member because he had lived so many years separate from them. His obituary listed his name, age, nature of his disability and the name of the group home where he had lived his last days. That was it. No mention of accomplishments. No mention of loved ones who are left behind. No mention of what he loved to do. No mention of his faith. Even the funeral service only focused on his disability and the hardships that he faced in his life.
As I read Tim’s obituary and as I look forward to the celebration of his life, which will happen on May 26th, I realize that because of Tim and his family, people with developmental disabilities have more opportunities to experience a full life, with family, friends, accomplishments and respect. In many respects Tim’ life was ordinary, but it was extraordinary in that he was able to show us that no one has to live a life of isolation and dependence just because they experience a disability.
Sometime before 5am on April 21st, Tim somehow managed to reach up and remove the vent from his throat. He talked to his parents on the phone, visited with his siblings and close friends and sometime mid-morning, told his siblings that he was ready. He died surrounded by people that he loved and that loved him. He died with dignity and he was able to be in control of his life until the last second. He was respected and listened to and his wishes were honored.
In Memory of Dawn E. DePesa
October 7, 1963 - November 17, 2006