Meet The Man Who Stands On Corners, Tirelessly Advocating For Disability Rights
MORRISTOWN, N.J. — During the later years of the 1970s, Bill Byrne enjoyed walking his dog down the road in his town of Barrington. When the weather was warm, the two of them would explore the quiet neighborhood. When the weather was cold, Byrne dressed warm and wore gloves that wrapped around the leash, making sure not to walk too far.
Turning around the corner, Byrne ran into a group of kids from grammar school he didn’t know. “Hey retard, if you’re so strong, pick up this,” they said to Byrne as they spit on the ground.
As they pointed and laughed, Byrne ran home crying with his dog trailing behind. He told his dad he can’t take it anymore, that every time he walks down the street, someone makes fun of him. His dad took time to calm him down, and told Byrne it wasn’t his fault.
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“Next time they make fun of you, say ‘Jesus loves you,'” Byrne recalled his dad telling him. After that, the kids started to walk away.
Born in 1953 in Ithaca, N.Y., and growing up in Framingham, Mass., Bill Byrne — now a New Jersey resident — has been fighting for acceptance and understanding most of his life. He was diagnosed at a very young age with a rare disorder called Phenylketonuria (PKU) soon after he was born, which has fewer than 20,000 cases a year in the U.S. When untreated, the condition can cause intellectual disabilities and seizures, among other issues.
Byrne’s mother Emily and father William took him to many doctors, but at the time, in the late 1950s, PKU was not only rare, but rather new, and not much research had been done on it.
At least one doctor suggested institutionalizing Byrne, suggesting he would never be able to walk or talk. But his parents refused.
“My mom and dad saved me,” Byrne says. “That they had a sense not to put me in an institution. Back then they didn’t have group homes, so they threw a lotta kids in institutions and forgot about them.”
Byrne, his younger brother Chris, and his younger sister Eileen, all had PKU. Holding back a few tears, Byrne says if it wasn’t for his family, he wouldn’t have made it, and he wouldn’t be the person he is today.
Instead of being locked up, Byrne broke out. He became the poster child for PKU throughout Massachusetts and, even today living in Morris Plains, he continues to be an advocate for disability rights.
PKU can be treated and cured if it is caught early enough in the baby’s life but when left untreated, it can cause permanent brain damage, intellectual and developmental disabilities, and sometimes seizures. In 1963, largely thanks to people like Byrne’s father and mother advocating, Massachusetts became the first U.S. state to require all babies to be tested for PKU. By 1975, 43 states required testing for PKU.
Before he even hit double digits in age, Byrne was telling the public about his condition, and informing the community about other kids with from intellectual disabilities, often featured in The Boston Globe, The Boston Traveler, and he made special guest appearances on radio stations.
Despite his micro-celebrity status, Byrne still struggled every week with being accepted in society. Work was especially difficult.
In the 1970s into the early ’80s, Byrne helped his childhood best friend Dave Dewar run his lawn care service. Using two push mowers and a Chevy Nova they got from Dave’s father, the two would cut lawns around Morris Plains.
“Dave really believed in me when other people didn’t,” Byrne says. “Often I would get people asking Dave ‘what’s that retard boy working with you for?’ as I was standing right there. It really hurt.”
When Byrne was feeling hurt and let down by the people around him, his friends would help. Byrne’s oldest friend Ron Lewis, who he’s known since 1955, was one of those people who always put Byrne in a better mood. Byrne, Dave and Ron liked to go bowling, play miniature golf, and go to the movies together in Barrington where they lived as young adults.
But the person he is most grateful for is Marry-Ann Kormongy, an old girlfriend of his. Back when they were young, Byrne loved taking her to football games in high school so the two could watch his brother play, even though they lost nearly every game.
Kormongy, who is legally deaf, would get bullied growing up and into adulthood for wearing a hearing aid. Byrne often stood up for her, and she would for him too. And even today, she and her husband are still very supportive people in his life, he said.
“She’s been very supportive of me since I met her,” Byrne said. “When I had a tough life at home, I had a birthday party and some people over, I ran into a situation where I was in a really rough spot, so right away she came over to help me out of that situation.”
At 36 in 1989, Byrne was elected president of the United Self Advocates of New Jersey, or the Unity Club, a group that advocated for the rights of those with disabilities.
He received a congratulatory letter from Justin Dart, who was the chairperson of the Task Force on the Rights and Empowerment of Americans with Disabilities at the time. The letter informed Byrne about the rough draft of the Americans with Disabilities Act (ADA).
In his lifetime, Byrne has won over 70 Special Olympic medals. As Byrne got older, he started doing race walking, which was less hard on his knees. To continue to help, Byrne began coaching race walking as well as bowling in the Special Olympics.
During the early 1990s when disability advocacy got heated because of the introduction of the ADA, Byrne decided to take a break from the Special Olympics to focus more on advocating for those with intellectual disabilities.
Now at 69 years old, living in Morristown, Byrne spends a portion of his free time standing at nearly every corner around town, waving a sign the same size as him that reads “PEOPLE WITH INTELLECTUAL DISABILITIES MATTER,” while wearing a pin that tells people not to use the “r-word.”
“I carry that thing with me everywhere,” Byrne says. “I was up on the Morris Green, I was going up Franklin Street, one guy goes up to me and says God bless you, sir. I’m on Facebook, I mean people go nuts.” Throughout his life, he’s never let his disability slow him down.
When Byrne carries his sign around town he holds it up to any school bus that passes by in hopes that the younger generation will take note. Some people in passing try to offer Byrne money, but he always turns it down.
“I’m not soliciting, I’m educating. If I take money, things get messy.”
For the past 40 years, Byrne has been an active member of The Arc, formerly called Association for Retarded Citizens of the United States, giving speeches across the country, from New Jersey, to Alabama, Alaska, and Toronto.
Members of the community along with Byrne were strong advocates for removing the r-word from The Arc name, as they found it both offensive and demeaning to what Byrne calls “his fellow brothers and sisters.”
Salvador Moran, the executive director, and CEO of the ARCMorris, as well as Byrne’s old friend, says he has done work for the ARC for many years.
“ARCMorris has known Billy for over 40 years, he is a strong advocate for people with disabilities because he is in a position where he thinks he can help them from an advocacy perspective.”
In Morristown, Byrne attends every council meeting. During the public hearing portion, the town council always expects Byrne to say something, even if all the other pews in the town hall are empty, with no one else there to listen.
Lately, Byrne has been advocating for an increase in wages for direct care staff who help people with intellectual disabilities, among a new state budget. Over the years Byrne has turned an acquaintanceship into a friendship with Morristown Mayor Timothy Dougherty.
In 2012, Mayor Dougherty presented Byrne with a proclamation, officially naming August 16th Billy Byrne Day in Morristown and he was even given the key to the city for his disability advocacy.
“Bill and I have a genuine friendship, which I truly cherish,” Dougherty said. “He means a lot to me personally and to many within the Morristown Community. We often have lunches, dinners and coffee together. I am so proud of his self-advocacy accomplishments in helping people with intellectual and developmental disabilities and for his work in the community.”
Along with direct care staff wages and state dollars being put towards those living in disability group homes, Byrne has been advocating with Dougherty over people riding bicycles on the sidewalks around Morristown.
Even as he approaches 70 years old, Byrne tries to stay as active in his community as he can.
In September, he was nominated and awarded the Colleen Fraser Self-Advocate Award by the New Jersey Council on Developmental Disabilities for his years of advocacy.
William Testa, who served as the ARCMorris’ executive director for 29 years, praised Byrne on his continual fight for those with intellectual disabilities during a ceremony.
“Bill Byrne has been a tireless disability advocate for Morris County for nearly 40 years,” Testa said. “He continues to be extremely active on the local level, being on a pedestrian safety task force, as well as numerous housing committees, he is always working hard to recruit new self-advocates, who he hopes will continue his legacy.”
While in retirement, Byrne manages nine different housing committees for the ARCMorris. He is on a rent level board for Morristown, but worries about the direct care staff that help care for those with intellectual disabilities.
As each day passes Byrne can’t help but worry more and more about his future, and about the next generation of disability advocates. “I don’t got much time left,” Byrne says.
To jog his memory, Byrne lays out nearly all his old photos, dating back to before his earliest memories in the early 50s, to this summer, the memories flooding back put a smile on his face, but also a tear.
“Just believe in yourself and know that you can do anything you put your mind to, don’t let anyone tell you differently.”
Many people with intellectual disabilities in Byrne’s generation were strong advocates in fighting for their human rights and inclusion in society. He fears many people will get comfortable, and stop advocating for the things his generation fought dearly for.
Despite laws like the ADA, Byrne still feels like there is a lot of work to be done in terms of budgeting and financing for those with disabilities.
“We’re at war right now,” Byrne says. “This is a war about living out in the community, it’s about having a job, it’s about your life.”
While many senators and governors across the country are supportive of those with physical and intellectual disabilities, he fears the world will one day forget about those with intellectual disabilities, and vote in officials who don’t care for people like Byrne.
Byrne said if he got to live his life over again, he wouldn’t change anything about himself.
“As you get older, and you see the difference that you’re making, you know, it’s like for anything in the world, I wouldn’t change this, because having a disability is not a bad thing, I can use it to educate people in a disability community, and teach them that this is just what it’s like.”
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