“I won’t settle for just fighting for myself.”
John Topper can’t speak, but he is far from silent.
Although Huntington’s Disease robbed John of his ability to communicate vocally, it hasn’t stopped him from advocating for the many disabled people in Pennsylvania’s prisons.
That’s why the Prison Society will be proud to honor John as Incarcerated Person of the Year at the Society’s annual Love Above Bars celebration on September 17 at Philadelphia's Triple Bottom Brewing.
“John is one of the most caring people,” said Jessica Reed, the Prison Society’s prison monitoring manager in Central Pennsylvania. “From the time that he went to prison, he has strived to help others.
“Before John received the devastating diagnosis of Huntington's Disease, he found purpose in working in the special needs unit to help [incarcerated people] who needed assistance,” she said. “John is not just fighting for himself; he is also fighting for all of those who have disability needs within the prison system.”
In 2018, after a year in prison, John’s health began to decline, and he was later diagnosed with Huntington’s Disease — a degenerative disease that causes the brain to decay over time. John will first be eligible for parole in 2032, but he has applied to have his sentence shortened so that he can be transferred to a nursing home better able to meet his physical needs.
As you read this, you’ll see that John’s words are quoted. He has a special device, an UbiDuo, that allows him to type his words, which the device then reads aloud so he can communicate both audibly and by writing. That device is at the heart of his advocacy, but more about that later.
John’s story starts in York, with a rough childhood, addicted parents, and time spent in foster homes. Addiction also captured him, mistakes followed, and he entered prison, most recently in 2017.
As part of his sentence, John got clean through prison drug rehabilitation programs. They inspired him to become a peer support specialist and cancer caregiver.
“I was busy from 6 a.m. to 9 p.m., taking guys to different places, cleaning their cells, cleaning up accidents, both from bodily functions and from spills,” John wrote in a clemency petition.
“I would get the guys into the showers, talk to guys that needed to be calmed down, intervene sometimes and mediate sometimes, cook and feed guys who were unable to do so themselves, get them clean clothes and get the dirty ones washed. I barely had time for myself or my own needs, it seemed. The time flew by. I loved it.
“What goes around comes around,” John wrote.
“Because of my Huntington's, I am in a wheelchair and have lost the use of my voice,” he wrote. “Now I have a Certified Peer Support worker taking care of me. I could not survive without the help of these caregivers.”
John’s support work in prison amplified a lifelong impulse to help others — a desire that sharpened as the disease took hold.
“It's really made me take steps back in my life to evaluate what got me here and start to do things to overcome that and become a better person who is prepared for society,” he wrote.
In 2018, as he began to lose his ability to speak, John couldn’t respond to orders from corrections officers and was sometimes disciplined. He couldn’t ask for a toothbrush, report that his toilet was clogged, request a shower, his eyeglasses, or warmer clothes. He couldn’t access programs or work on legal matters.
Prison-permitted entertainment tablets helped him communicate, but they could only be used in his cell, didn’t work well, and frequently broke. Officials provided a laminated card printed with the alphabet, but didn’t have the patience for him to spell out his needs letter by letter.
He became so frustrated that he attempted suicide.
And then he decided to fight — for himself and for all the disabled people in prison.
He focused his fight on communication, including adaptive devices like the UbiDuo. For John, and others in the same situation, reliable access to reliable communication matters.
In February, with the help of the Prison Society and its allies — the Pennsylvania Institutional Law Project and Disability Rights Pennsylvania — John, then housed at SCI Forest, filed a federal lawsuit against Pennsylvania’s Department of Corrections (DOC).
“The Prison Society has been great in all this since I first reached out to them in 2022. They have advocated for me every step of the way — supported me with my stance to better things for incarcerated individuals with disabilities,” wrote John, now incarcerated at SCI Mahanoy.
By law, incarcerated individuals with disabilities are entitled to the rights, protections, and accommodations of the Americans with Disabilities Act.
U.S. District Judge Phillip J. Caraballo soon ordered the DOC to give John an effective communication device for his personal use. That ruling resolved some of John’s immediate needs, and he could have easily decided to drop the case.
But he didn’t.
“I have been through so much over the past six years, I feel like I am able to continue to face the challenges ahead to continue to accomplish this goal that will one day benefit all individuals in need that are incarcerated in Pennsylvania,” John wrote.
As a practical matter, John worries that the prison could stop providing his current accommodations and not give him access to other accommodations he needs, including a phone that would allow him to have “a real conversation with my Mom.”
“More importantly, if I pull out and not win my lawsuit, it won’t become precedent so other disabled people in here can use it to get the things they need,” John wrote. “If I give up because it is hard, then I’ve done nothing to help other disabled individuals.
“I won’t settle for just fighting for myself.”