Steak is Coming: Joaquin’s Story
In his early life, my brother, Joaquin Carson, attended a segregated public school and then a completely separate non-public school for autistic children. After being expelled from both schools and introduced to psychotropic medications, Joaquin spent a large portion of his adult life in an institution – over 15 years – with an eight-year stint in a group home sandwiched in between.
Joaquin’s dehumanization, via segregation and institutionalization, took a great toll on his health, well-being, and personal growth and development. Although our family never intended for Joaquin to become lost in the system that resists strategies for promoting optimal life quality, we were overwhelmed, without appropriate supports, without choices that made sense for Joaquin, and without hope of meaningful outcomes in his life. That is, until we discovered that there were options that Joaquin needed and would want.
We knew that Joaquin would be happy and thrive in a home of his own, in a rural community, as my neighbor. Joaquin and I have always been very close. Joaquin has always loved rural environments.
Thus we began our exhausting quest to get Joaquin out of Fairview Developmental Center. For three years, we worked to get San Diego Regional Center to fund supported living services for Joaquin to allow him to live in his own place with the appropriate help.
During this long string of disappointments, my mother, the most amazing creator of culinary delights for Joaquin, promised to make him a special meal for his homecoming dinner when he got out of the institution. She asked what he wanted her to make for him. He replied, “steak.” And he clung to that encouragement for the remainder of the journey, continually proclaiming, “Steak is coming!”
Eventually, we figured out that “steak” was a metaphor for life quality. Every weekend, our family drove four hours round-trip to spend the day with Joaquin. During those visits, “steak” was always on his mind. Our family’s journey to bring Joaquin home was met with confrontation, delays, and denials by the Regional Center. But finally, a judge said that our plan made sense, that Joaquin would be safe in the community, and that he had the right to choose where he wanted to live.
Joaquin has been home for more than five years now. He finally has access to things that most people take for granted – like effective communication. Since his words are often metaphors or repetitions and can sometimes be unreliable, he is learning to supplement his communication by typing his thoughts and feelings. But more importantly, he is learning that his communication matters because his choices are honored.
Joaquin has access to community. He walks to the local corner store to purchase his favorite snacks where the neighbors all know his name and greet him. He rides his bike whenever he wants to. He relaxes under his big oak tree with a cup of tea. And when he needs help, the locals know and love him and offer their support.
Joaquin has access to contribution. He cleans his house, does laundry, and prepares meals. And he picks up trash in parks and along roadsides all over San Diego County every day. He loves his job.
Joaquin has access to education. He attends a disability studies class of 500 students at San Diego State University on Wednesday nights and is greeted with a front row reserved for him and his support team. He attends and co-presents at conferences with me. He studies books and websites of his choosing with his support team each day.
Mostly importantly, Joaquin has access to those he loves. He walks up the driveway to my house for breakfasts together. He calls me at work. We meet at the park for walks together when I leave work. Joaquin was with our mother during her journey with cancer, was able to give her love, was able to be with her the morning she died, and was able to mourn her death among family and friends.
These outcomes cannot be measured in money, time, or ability. And they matter. Steak matters.
by Diana Pastora Carson, Sister