Rochester-native Samuel Mattle, who has cerebral palsy and epilepsy, has spent his career confronting ableism that often tried to stand in his way.
“Barriers, to me, are ways to prove to people that what their perception is, is wrong," said Mattle.
Mattle faced many barriers when he started working. Despite having a degree in video communications, companies wouldn’t consider him for video editing jobs. This, however, led him to pivot into AmeriCorps, which introduced him to working in disability services. But later, even with a full-time job in the state’s disability services agency, he still faced ableism.
“I moved to Buffalo for a job opportunity. And the person wouldn't hire me," said Mattle. "And basically, he said, we have enough people with developmental disabilities, we don't need anymore.”
The ableism he experienced led him to wonder if there should be more agencies run by disabled people, for disabled people. That’s how the Center for Self Advocacy was born.
“This one day, I was like, you know, not that SANYS needed help, but I thought there should be a second voice, of a self advocacy organization. And I got the idea on a napkin at a coffee shop," said Mattle.
What is a developmental disability?
Developmental disabilities are conditions that present before age 22, such as autism, ADHD, cerebral palsy, spina bifida, and learning disabilities. It is estimated that over 7 million people in the US have an intellectual or developmental disability (I/DD).
SANYS, which Mattle mentioned, is the Self Advocacy Association of New York State, where he served in AmeriCorps. Self Advocacy is a movement central to disability rights. Led by people with intellectual and developmental disabilities, or I/DD, the movement focuses on disabled peoples’ autonomy and self-direction.
“It provides empowerment for people to speak up for themselves and others. And what it means to me, it was a key component to my life personally, to be able to look at things differently and to help accept myself and who I was and take the skills that I did have, and utilize it for the self-advocacy movement,” said Mattle.
Ten of CSA’s 11 board members are people with disabilities. The majority of the staff are also people with disabilities. Located on Broadway in Buffalo, CSA uses a peer-support model to fill the gaps where other services don’t: such as by giving a crash-course in using the NFTA and paratransit, teaching digital skills that allow self-advocates to better access healthcare, and creating spaces for self-advocates to network and share experiences. These programs help break down barriers to important skills and services needed to live fully in our community and lead as self-advocates.
“I think that one of my biggest beefs in the world is that people with developmental disabilities are often very marginalized. And they're often very marginalized by the very people that are there to work with them, and help support them," said Anne Haberer, CSA’s executive assistant. Haberer lives with chronic illness and hearing loss. She also runs CSA’s Women’s Group.
She says CSA’s work goes beyond just the barriers they are trying to change. It’s modeling that peer support works, and that disabled people can and should be provided opportunities to lead.
“I think that CSA and the philosophy of peer-to-peer is really shining a light on the fact that peers are competent, peers know what they're doing," said Haberer. "Peers are not there to be assisted, but they can help you. And they've had the lived experience, that you really need to know what to do in your life.”
To learn more about CSA or connect with their services, visit
center4sa.org.
