“The Person Emerging from His Shell”: Empowerment by Persistent Advocacy
Ryan & Jacki Folger
Our society struggles to care for people with intellectual and developmental disabilities (I/DD). As a result, Ryan Folger’s already chaotic infancy led to a childhood with even more struggle around his disability. It was his Aunt Jacki’s tireless advocacy that gave Ryan the opportunity to grow into his true self. People with intellectual/developmental disabilities (I/DD) and their family members are often, without being asked, forced into lives of advocacy.
Ryan was born in 1991 in Worcester, Massachusetts, 18 weeks premature, weighing a little more than one pound, and completely blind. Doctors diagnosed him with a seizure disorder and fetal alcohol syndrome. He received his last rites the day he was born. After five arduous months in the hospital, Ryan finally went home with his mother. Unfortunately, that was not a good home for him, and he was soon placed into his Aunt Jacki’s care. Having found a loving and stable family, Jacki eventually became his legal guardian. With his newfound permanent family and stable home, Ryan was out of danger. His future remained uncertain, though, as any child’s is when they are born with a disability.
Jacki quickly built a network of helpful people, and Ryan enrolled in the local public school’s special education program after being diagnosed with Autism Spectrum Disorder (ASD). He struggled, though, frequently exhibiting aggression towards other students. His teachers frequently called Jacki at home seemingly just to vent about how difficult Ryan was. Jacki was empathic; the teachers, even with their professional background, were in over their heads.
Perkins School for the Blind, one of the oldest and most respected schools for the blind and people with I/DD, gained its reputation in part providing services to Helen Keller, as well as her teacher, Anne Sullivan. As luck would have it for the Folgers, it was only 40 minutes away from Ryan and Jacki’s home. Located in Watertown, MA, Perkins would prove to be exactly what Ryan needed to flourish. Since first learning about Perkins, Jacki was determined; this is where Ryan should be. After six years of her making the case to her local public school board Ryan began taking classes at Perkins at nine years old.
The staff at Perkins were well-equipped to support Ryan. A psychologist there noted that Ryan struggled to manage behaviors. They believed this was a result of early childhood trauma. Made even more difficult with a limited ability to speak, Ryan could not identify the difficult feelings he experienced. When he experienced even mild fear or anger, Ryan reacted aggressively, as if he were actively experiencing a dangerous situation.
The rest of Ryan’s childhood and early adulthood was not without its struggles, but little by little he gained the ability to come into his own personality over the years. Even early on as the Perkins staff initially got to know and work with Ryan, Jacki observed significant changes in his behavior. One event of significance was when Ryan’s brother, Justin, was playing basketball outside their home. Ryan heard the ball bouncing and gestured to go outside—a feat in itself as Ryan was previously afraid to even leave the house. Jacki and Ryan went outside where Ryan approached his brother, saying, “Justin, Justin, ball!” Jacki, still emotional years later, recounts this memory, saying, “For him to communicate like that, to show his wishes, was such a milestone. This is what we had been fighting for! This was the person emerging from this shell that he’s been trying to protect himself in. He’s reaching out, he’s trying to communicate, he’s trying to put the pieces together.”
Thanks to the support Ryan received at Perkins and at home, his social skills advanced beyond basic behavior management. Ryan not only emerged from his protective shell, he shattered it and began spending as much of his free time as he could with friends, or on the phone with them. He developed a passion for music and learned to play the piano. This gave him a creative outlet and social hobby while also helping him afford Perkins by providing a partial scholarship.
After his graduation, Jacki and Ryan had little reason to stay in Massachusetts. Their I/DD services system, in spite of its inefficiencies and dysfunction like those of any state, managed to serve Ryan well. But Jacki missed her family in the western U.S., and they both had had enough of harsh New England winters. They moved to Las Vegas in 2014, where Ryan now works at Opportunity Village (OV). He participates in their employment program, packaging and sanitizing materials for local businesses. It is a rewarding job for Ryan, not only for the work and pay itself, but also the social atmosphere. Ryan is the definition of a people person and has many new friends at work.
Shortly after Ryan’s transition to OV, Jacki joined their family organization. It was there that Tracy Brown-May and Jacki first met. An advocate herself, Tracy also serves as an officer to TFC and A Team Nevada. As luck would have it, the A Team was in search of a lead organizer and Jacki had just what they were looking for; a passion for advocacy and supporting people with disabilities. The A Team’s focus is on mobilizing self-advocates, and while Ryan was unable to grasp advocacy in the political sense, Jacki knew this role was key to pursuing true disability rights.
Within a few weeks of accepting the position in March of this year, Nevada began sheltering in place, and Jacki’s new job became almost entirely focused on COVID-19. While social distancing, Jacki is supporting self-advocates, family members, and support staff with weekly calls to share political updates relevant to the lives of people with I/DD. She is also proactively preparing to protect and increase funding for disability services during the economic downturn as a result of the pandemic. “So many times, when cuts are coming, they don’t come and ask people [with disabilities], ‘How do you feel about it?’ [Government leaders] in the state house are making all these decisions and not even consulting these people who they’re affecting."
Even through the ongoing chaos of this year, Ryan and Jacki are happy. They have a new home and new jobs. Ryan even met his first girlfriend, Lea, while working at Opportunity Village. He is still able to see her even without work, albeit from at least six feet away. Jacki feels a new sense of purpose in her job, now directing her fearlessness to advocacy not just for Ryan but all people with I/DD. And, as she tells Ryan, “If you’re not part of the solution, you’re part of the problem.”
Ryan & Lea
By Jonathan Neidorf, Assistant to the TFC Board