Best Buddies matches middle and high school students with peers who have autism, part of its mission to support diversity inclusion and “uplift every individual with a disability, celebrate their talents and support their dreams.”
So when U.S. Secretary of Health and Human Services Robert F. Kennedy Jr. said many people with autism will “never pay taxes, they’ll never hold a job” and that autism is a “catastrophic” condition that “destroys families,” some of the top advocacy leaders of Best Buddies in Colorado wanted the nonprofit to speak up.
The issue, though, is that the organization that expanded to Colorado schools in 2018 was founded by Kennedy’s cousin, Anthony Shriver, who posted that he was “next-level proud” of Kennedy’s appointment as the nation’s top health official. And while disability advocacy agencies across the country were blasting Kennedy for his comments, including his proposal for a national registry of autistic people, Best Buddies was relatively quiet.
The organization put out a joint statement with Special Olympics in April that referred to “some hurtful misconceptions floating around about people with autism” but did not mention Kennedy.
The controversy sparked a bonfire at Best Buddies in Colorado, resulting in the resignations last month of three people on the 11-member advisory board in Denver. The Roaring Fork Valley branch of Best Buddies had already lost one of its advisory board members, who was last year’s “champion of the year” after raising nearly $120,000 at the region’s annual gala in Aspen.
If there is an organization for women, they say that sexism is bad. If there is an organization for minorities, they say that racism is bad.
— Emily Gillis, former member of Best Buddies advisory board
In an Instagram post, Nicole VandeBoom blamed her resignation on Shriver’s praise for his cousin.
Emily Gillis, who resigned from the Denver advisory board May 12 after serving three years, had been involved in Best Buddies since high school in Virginia and helped start a chapter in the Washington, D.C., area. She said she could no longer associate with a nonprofit that would not stand up to ableism.
“I am devastated to be at the point where I feel like I have no choice but to step away,” Gillis wrote in her resignation letter, which she shared with The Colorado Sun. “I was raised to believe that you stand up for your friends, you support your friends, and if someone is bullying them you speak up. I am absolutely crushed to come to the realization that Best Buddies won’t support folks with disabilities when it matters most.”
Before she resigned, Gillis, 27, and others attempted to get Best Buddies’ leadership to take a public stand. She and other Denver board members reached out to the national leaders of the nonprofit, but were told that the Best Buddies would stay neutral and out of politics. Gillis also pitched an Instagram post, a series of slides that would explain why ableism — saying or implying that people without disabilities are superior to those with disabilities — is harmful.
A top-level health official saying people with autism cannot work was in direct opposition to the goals of the organization, Gillis argued. “It reinforces years and years of debunked myths and it causes so much harm,” she said.
Best Buddies’ leadership, Gillis said, told her no.
The message was, “If you want to say that ableism is wrong, go somewhere else,” Gillis said. “It’s so disappointing. If there is an organization for women, they say that sexism is bad. If there is an organization for minorities, they say that racism is bad.”
“We are not responsible for what happens in the Oval Office”
The nonprofit’s state director declined to comment for this story. National leaders at Best Buddies headquarters in Florida responded to The Sun by sending a link to the April joint statement that didn’t mention Kennedy. They said Colorado was the only state where Best Buddies leaders resigned due to Kennedy’s remarks.
But in an April email to board members after Kennedy’s comments, state director Rachael Fischer requested a meeting to address concerns.
“His remarks have understandably caused concern, especially within the disability advocacy community,” Fischer wrote in the email, which was shared with The Sun. “As volunteers and champions of inclusion — who are supporting a Kennedy organization — many of us may be grappling with how to respond. While Best Buddies shares a name with a member of the Kennedy family, it is important to emphasize that we are a nonpartisan, nonpolitical organization.”
She reiterated that the mission of Best Buddies was to “uplift every individual with a disability,” and said that during the last part of April, which is Autism Awareness Month, the nonprofit would continue to share the “incredible accomplishments” of people with autism, including actor Dan Aykroyd and environmental activist Greta Thunberg.
In what seemed like a rebuttal to Kennedy, Fischer wrote that autism is “not something to be ‘cured.’” Kennedy said he wanted to find a cure for autism and proposed creating a national registry of autistic people at the National Institutes of Health to aid the research and track potential environmental causes.
“We are not responsible for what happens in the Oval Office — but we are responsible for what happens here in our communities,” Fischer wrote.
Anthony Shriver, founder of Best Buddies, center, with Best Buddies volunteers, including Emily Gillis, at a friendship walk in Washington, D.C., 10 years ago. (Provided by Emily Gillis)Her nonpublic message was not enough for some Colorado board members who resigned, including Kelsey Parisi, a special education teacher who has worked in Douglas County and Cherry Creek school districts.
“As someone who cares deeply about inclusion, advocacy, and respect for neurodivergent individuals, I expected a direct, unequivocal condemnation of such rhetoric from an organization that claims to champion the voices of individuals with disabilities,” Parisi wrote in response to Fischer’s email. “Instead, the response feels overly cautious, more focused on distancing Best Buddies from the Kennedy name than confronting the actual harm these comments have caused.”
For Parisi, who has helped run the Best Buddies program in two Douglas County high schools, the situation caused intense personal conflict. “I am so frustrated with the hypocrisy with headquarters and how they have handled this whole RFK situation, but at the same time, I’m in awe of how powerful these programs can be,” she said in an interview.
She recalled the feeling of accompanying a group of about 20 high school students, half of them with disabilities, to dinner and a movie. For some of her students, it was the first time they had gone out with peers, paid a dinner bill without the help of their parents, and learned how to start a conversation with a group of teenagers. “I’ve seen so many friendships blossom,” Parisi said. “I’ve seen confidence go through the roof.”
But she felt she could not stay with an advocacy organization that was not advocating, she said.
“My biggest question was how can we be advocates for the disability community and encourage these individuals to get jobs, be productive members of society when the people in politics are saying they shouldn’t and they can’t and they won’t?” she said. “That puts us back 50 years.”
How can we be advocates for the disability community and encourage these individuals … to be productive members of society when the people in politics are saying they shouldn’t and they can’t and they won’t?
— Kelsey Parisi, former member of Best Buddies advisory board
Parisi said as a teacher and volunteer, she will continue to support diversity inclusion, but she will not sit on Best Buddies’ advisory board, which helped the nonprofit with fundraising and public awareness. She also will take a step back at her new high school in Cherry Creek while another teacher establishes a Best Buddy program.
Parisi and Gillis said advocating for people with disabilities should not have to feel like taking a political stance, but in the current political environment, the resignations marked a political divide. The third Denver advisory board member who resigned, Kristen Lervik, declined to comment for this story.
“He has a disability but that doesn’t define him”
Best Buddies now has about 400 members, or nearly 200 buddy pairs, in dozens of schools across Colorado since expanding to the state in 2018. The programs are run by students with a faculty advisor. The nonprofit also has an adult buddy program, and a new family support program in which Colorado families who have a child with a disability — or learn while pregnant that their child will have a disability — are matched with families who have already raised a child with a disability.
There is also a jobs program that links people with autism and other disabilities to employment.
Shriver founded the nonprofit in 1989, inspired by his mother, Eunice Kennedy Shriver, who in the 1960s started the Special Olympics. Eunice grew up swimming and sailing with her older sister, Rosemary, who had an intellectual disability, according to Best Buddies. The sisters also played football with their brothers, including former President John F. Kennedy and former U.S. Sen. Robert F. Kennedy, the father of the current secretary of Health and Human Services.
Emily Gillis, who recently resigned from the Best Buddies advisory board, with her dog at this year’s Best Buddies Friendship Walk in Denver. (Provided by Emily Gillis)Robert F. Kennedy Jr., a vaccine critic who has linked vaccines to autism, was unpopular with the disability committee even before his latest comments calling autism an “epidemic” that was caused by “an environmental exposure.” Various studies, including by the Centers for Disease Control and Prevention, have found that vaccines do not cause autism.
In a Senate hearing, Kennedy spoke about treating children with autism with chelation therapy, a procedure to remove heavy metals, including mercury, from the body. A child died from the treatment in 2005.
Calling autism an epidemic implies that rates are soaring, but many health officials say that is not what’s happening. While current CDC data shows that 1 in 31 children are diagnosed with autism, many experts maintain that the rise in prevalence is due to an expansion over time of the definition and spectrum of autism and not environmental factors.
Besides the recent alarming statements about chelation treatments and a national registry, former Best Buddies board members said they are concerned that Kennedy’s comments will erase the last decade of progress in the battle against ableism.
Advocacy organizations have been asking for “people-first language,” for starters. Don’t use a person’s disability to describe them. “Don’t say, ‘that Down syndrome kid,’” Parisi said. “It’s just a kid. Yes, he has a disability but that doesn’t define him.”
Parisi, 31, uses the word “typical” to describe people without disabilities, not the word “normal.” She cringes when people say something like “he doesn’t look disabled” or note that a person with a disability is a good athlete or has a good job in spite of their disability, remarks like, “Good on them for getting out there and trying!”
Even without Best Buddies as part of her life, Parisi said she will keep advocating for those things.
“I am grateful for the friendships and experiences I’ve had along the way,” she wrote when she resigned. “But my commitment is, first and foremost, to the disability community. My advocacy has never depended on branding, but on relationships, integrity, and the unwavering belief in the worth and dignity of every person.”
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