Patty Keleher’s autobiographical first book, The Life of a Late Bloomer, is a study in contrasts.
The events she traces are so familiar in the arc of a life: growing up in a loving family, going away to school and camp, getting a high school diploma, falling in love and breaking up, working at jobs both fun and forgettable, traveling on vacation, moving to new homes, and dealing with grief at her father’s death.
But Patty brings us an intimate look at how these life experiences play out for someone with severe cerebral palsy. To rely on others, for communication, for mobility, for eating, for personal care, for so many facets of your day, makes you vulnerable in a way that’s hard to understand for the non-disabled.
No matter how strong she is (and she is), no matter how vigorously she advocates for herself (and she does), every day Patty relies on the goodwill and skill of those who provide her supports. DSPs who follow Patty’s lead and support her with compassion and enthusiasm make all the difference in her quality of life.
Over her 68 years, Patty has experienced the profound changes in the way people with disabilities are supported. Her parents resisted the advice of doctors to institutionalize her and instead gave her a full and vibrant childhood with her siblings. Throughout her youth, Patty attended camps for the disabled and worked diligently with therapists to learn to speak and increase her mobility. But her school district was not prepared to educate her, and she had to leave home during the school year to attend a specialized school out of state. Among the friendships she made, there was a lifelong relationship with a local patron of the school. She took Patty under her wing and became like a second “mom”. The support of people who loved and cared for Patty made possible the cherished life experiences we all hope for.
Along with her family and friends, many DSPs have helped Patty to build her strong sense of self and to lead a life of her own choosing. But even with the many that built her up, there were the many who failed her, whose disregard for her was breathtaking. Patty’s use of a wheelchair and difficulty with speech leads some people to make assumptions about her without stopping to check their understanding. Patty’s number one determination throughout her life is to be heard. “I want people to understand my speech is not always clear, but I have important things to say. And also by looking at me you may see someone who is disabled. And yes physically I am, but mentally I am 100% here and understand everything you are saying.” Community members unfamiliar with disability are the most frequent offenders, but, painfully, some of the DSPs Patty has depended upon have fallen short too.
Over the course of her life, there have been more than a few. When Patty lived in her own apartment, staff sometimes didn’t show up, leaving her in the lurch. Other times staff ignored what she was asking for, even when her distress was obvious. There were paid roommates who did not bathe her properly and who became impatient with her slow eating. Her story reminds us that the daily grind of indifferent care damages a person’s life. Even so, Patty remains optimistic for herself and for others who are struggling to be heard: “I would tell them not to give up and to continue advocating for themselves, that eventually you’ll cross paths with someone that will stand beside you and help you be heard. Or be your voice if needed.”
Patty’s capacity to speak up and report her experiences was crucial to escaping the failures of her support systems. Patty’s experience is not unique, but not every person with a disability is able to report for themselves. The moral and legal obligation of everyone involved in delivering services to report disrespectful treatment, abuse, neglect, and exploitation is one of our most important ethical responsibilities.
The autonomy and personhood of people with disabilities is something we must promote and defend every day. This is true whether our job is a direct support, management, clinical, administrative, or leadership role.
When we have a deep and abiding regard for the people we serve, we empower them to seek and live their best lives.
Patty has had many wonderful experiences, with the support of DSPs and others who truly value and understand her as a complete person. Patty is currently sharing a home with providers, Susan, a nurse, and Susan’s parents Susma and Sangit. Susan and her family emigrated from Nepal and are part of a large network of Nepali families who provide direct support to individuals in NH. Through her past experiences, Patty has learned that having multiple supports in the home helps everyone stay fresh and physically ready to assist her. During the pandemic, this meant she remained at home, even when Susan needed to shelter elsewhere because of her work with COVID patients at the hospital. Patty values their friendship, their compassion, as well as the opportunity to learn more about Nepali culture. Sangit is an artist and has done a portrait of Patty that captures her beautiful spirit. Patty is a great football fan, especially for Tom Brady. She’s also General Hospital’s most loyal viewer, having watched every episode since it began in 1963. Prayer is an important part of Patty’s life.
This year hasn’t been easy though. Patty’s mother, her first and most beloved advocate, passed away at the age of 104. Despite the pandemic, Patty was able to have one last visit with her in the hospice home in Massachusetts with the help of DSP Tricia King. Patty posted a video of their visit to Facebook, sharing this sacred moment of connection with her many friends and family members. Patty had her own health issues this year too and was hospitalized several times. Patty has rallied, recovered, and returned home. Her individualized services mean that we can meet Patty where she needs us, wherever that may be.
But “individualized” doesn’t necessarily mean separate from others with disabilities. Patty has attended Camp Jabberwocky on Martha’s Vineyard for many years. (She’s even been featured in a recent book about the camp. And Patty’s own new book will feature the camp as well.) Patty appreciates the ease of relaxing in an environment tailored to her needs and the camaraderie of people who don’t need her to explain herself. Back in NH, Patty also looks forward to seeing everyone at NH’s Stratham office, whether staff or others receiving support. While she may only stop in for lunch or special events, it’s an important time for catching up with friends and sharing stories. These activities have been sorely missed this past year.
As she looks to the future, Patty is eager to get back to her regular life post-pandemic. “I want to go out to a bar, go to camp, and get out in the community and socialize.” Her DSPs will be right there to help make it happen.