Disability advocate Marisol Getchius said the hope is that increased...

Disability advocate Marisol Getchius said the hope is that increased awareness will generate more funding that can be dedicated toward securing necessary resources. “We don’t want anything special,” said Getchius, who has cerebral palsy. “We just want to level the playing field.” Credit: Debbie Egan-Chin

At times, the biggest wish for people with developmental and intellectual disabilities is just to be heard, and agencies and nonprofits came together this week to encourage them to advocate for themselves and for their rights.

The Reimagining Advocacy conference was held Wednesday for the first time in three years, held and hosted in Old Bethpage by the nonprofit Family Residences and Essential Enterprises Inc. (FREE), which supports individuals with intellectual and developmental disabilities, as well as those with mental illness and traumatic brain injuries.

“Historically, people with disabilities were not really brought to the same table in terms of having a say in their own plans,” said Jaime Crispin, FREE’s director of advocacy and community engagement. “I think in the last 15 years or so the movement has certainly been to ensure that all people have a voice within their own plan, with their own life. It’s about basic human rights.”

Allowing those with disabilities to advocate for themselves about where they reside and work, among other aspects of life, gives them agency over the direction of their lives, Crispin said.

The COVID-19 pandemic largely curtailed outreach efforts the past few years, but in-person events have begun resuming and the nonprofit is relaunching a speakers bureau that allows self-advocates to share their stories with communities to raise awareness.

The conference on Wednesday also highlighted Prideability, a statewide advocacy and support group for those with disabilities who identify as LGBTQIA, which has been a highly marginalized population.

“To have a disability in general and to want to be seen as a whole person, to have your full humanity recognized — and our sexuality is part of being fully human — is something that we need to continue to talk about,” said Pamela Boyle, a co-facilitator of the group and a socialization and sexuality specialist for AHRC Nassau. “Our goal is to reduce the sense of isolation, to reduce the sense of ‘no one else can understand and I’m all alone in this.’ ”

Christopher Whirl, a peer support specialist for FREE, often draws from his own experience: At 19 he was struck by a car and sustained a traumatic brain injury. It was while he was recovering in a day program that he said he realized his calling to become an advocate.

“I saw how people in this population struggled and how people in society looked at them and responded to them, and also how they didn’t respond and how they were dismissed,” Whirl said. “People should be heard.”

Michelle Flood, regional coordinator for Albany-based Self-Advocacy Association of New York State Inc., said people are often unaware of the lack of access given to those with disabilities. A recent trip to inspect polling sites found ramps not up to code, elevators that held only one person and other obstacles to voting, she said.

Marisol Getchius, a regional organizer for the organization who has cerebral palsy, said the hope is that by advocates raising awareness more funding can be dedicated toward securing necessary resources.

“We don’t want anything special,” she said. “We just want to level the playing field.”

At times, the biggest wish for people with developmental and intellectual disabilities is just to be heard, and agencies and nonprofits came together this week to encourage them to advocate for themselves and for their rights.

The Reimagining Advocacy conference was held Wednesday for the first time in three years, held and hosted in Old Bethpage by the nonprofit Family Residences and Essential Enterprises Inc. (FREE), which supports individuals with intellectual and developmental disabilities, as well as those with mental illness and traumatic brain injuries.

“Historically, people with disabilities were not really brought to the same table in terms of having a say in their own plans,” said Jaime Crispin, FREE’s director of advocacy and community engagement. “I think in the last 15 years or so the movement has certainly been to ensure that all people have a voice within their own plan, with their own life. It’s about basic human rights.”

Allowing those with disabilities to advocate for themselves about where they reside and work, among other aspects of life, gives them agency over the direction of their lives, Crispin said.

The COVID-19 pandemic largely curtailed outreach efforts the past few years, but in-person events have begun resuming and the nonprofit is relaunching a speakers bureau that allows self-advocates to share their stories with communities to raise awareness.

The conference on Wednesday also highlighted Prideability, a statewide advocacy and support group for those with disabilities who identify as LGBTQIA, which has been a highly marginalized population.

“To have a disability in general and to want to be seen as a whole person, to have your full humanity recognized — and our sexuality is part of being fully human — is something that we need to continue to talk about,” said Pamela Boyle, a co-facilitator of the group and a socialization and sexuality specialist for AHRC Nassau. “Our goal is to reduce the sense of isolation, to reduce the sense of ‘no one else can understand and I’m all alone in this.’ ”

Christopher Whirl, a peer support specialist for FREE, often draws from his own experience: At 19 he was struck by a car and sustained a traumatic brain injury. It was while he was recovering in a day program that he said he realized his calling to become an advocate.

“I saw how people in this population struggled and how people in society looked at them and responded to them, and also how they didn’t respond and how they were dismissed,” Whirl said. “People should be heard.”

Michelle Flood, regional coordinator for Albany-based Self-Advocacy Association of New York State Inc., said people are often unaware of the lack of access given to those with disabilities. A recent trip to inspect polling sites found ramps not up to code, elevators that held only one person and other obstacles to voting, she said.

Marisol Getchius, a regional organizer for the organization who has cerebral palsy, said the hope is that by advocates raising awareness more funding can be dedicated toward securing necessary resources.

“We don’t want anything special,” she said. “We just want to level the playing field.”

DISABILITY STATS

About 1 in 6 children in the United States has one or more developmental disabilities or other developmental delays

11,965,330: People age 18 to 64 with at least one type of disability

9,281,175: People age 18 to 64 with two or more disabilities

Sources: Centers for Disease Control and Prevention, U.S. Census Bureau