WXXI AM News

Disability rights

Philipe Rivera is sitting in his powered wheelchair on the Monroe County Department of Human Services campus.
Max Schulte / WXXI News

Philipe Rivera goes by "Flip." He's 34 years old and has cerebral palsy. He has a tattoo on his arm, uses a wheelchair, and communicates through a device called a DynaVox. 

"I also use a head pointer for my personal PC," Rivera said. "I cannot use my hands. I rely on people to help me with getting dressed, feeding, bathing, etc."

He's been at Monroe Community Hospital since he was 20. Before that, he lived with his mom who was struggling with substance abuse. She couldn't care for him, so he was placed in the nursing facility owned by Monroe County. He said it's never felt like a home. For 10 years, he's been trying to get out. 

Here's something you may not know: People with disabilities are not guaranteed the right to live in the community.

Luticha André Doucette

 

When the pandemic reached Rochester, equity coordinator with the city government Luticha André Doucette says that she was concerned for her safety. Doucette has a disability and is immunocompromised.

However, amid the pandemic there was a silver lining. Doucette along with so many others began working from home. Her cats have made regular appearances on ZOOM calls. She said that while it’s comfortable, it’s also brought up frustration. 

The first-ever Festival of Inclusion kicks off on Sunday. The community-based event organized by the Golisano Foundation, Best Buddies, and Special Olympics will promote equality and respect, and include activities accessible to people of all different abilities.

Our guests this hour preview the festival and discuss their ideas for how to create a more inclusive community. Our guests:

This story is reported from WXXI’s Inclusion Desk.

As part of Dialogue on Disability Week, we continue our series of conversations about inclusion and disability rights.

This hour, we discuss the value of respite programs for caregivers and people with disabilities. Respite programs provide a variety of short-term, temporary services that allow family members to take a break from the day-to-day schedule. Research shows respite programs can improve family stability, but many people who participate in them – or would like to – say the system is difficult to navigate.

Our guests discuss their experience with respite programs, and we talk about how to make them more easily accessible for families. In studio:

  • Stephanie Woodward, disability rights advocate with DisabilityDetails.com
  • Patsy, mother of a teenager who attends Epilepsy-Pralid’s after school respite and recreational respite programs
  • Joe Abbott, vice president of operations and COO at Epilepsy-Pralid
  • Dayna Wells, community services supervisor at Epilepsy-Pralid
  • Tia Guthrie, manager of waiver services at CP Rochester

This story is reported from WXXI’s Inclusion Desk

Provided

For one Rochesterian, living with a disability as a queer black woman means navigating not only racism and sexism, but also ableism.

Since she was a toddler, Luticha Andre Doucette has been living with incomplete quadriplegia and chronic pain. This, she says, has had a tremendous impact on her experience not because she uses a wheelchair, but because of how people view her and how inaccessible many environments are.

Local disability rights activist Stephanie Woodward recently wrote an opinion piece for the Spina Bifida Association about why she loves her disability. Woodward was born with spina bifida and has been an outspoken advocate for disability rights and disability pride.

In her piece, she writes, "Because I love my disability identity, I have never seen my disability as a problem. And because I have never seen my disability as a problem, I have never supported curing spina bifida or even preventing it. In fact, when I hear someone say 'I think the world would be a better place if we could prevent babies from having your disability in the future,' what I hear is 'I think the world would be a better place without people like you.'"

Many people praised Woodward's comments, while others pushed back. Woodward joins us for the hour to discuss her perspective and disability pride. In studio:

This story is reported from WXXI’s Inclusion Desk

A local sixth grader is going viral in our community. At the age of 14 months, Oscar Merulla-Bonn was diagnosed with spinal muscular atrophy. He's been driving a power wheelchair for years. Oscar recently gave a presentation to his school faculty about disability rights. He joins us this hour to share his research and experience, and to discuss how to create more inclusive spaces.

In studio:

  • Oscar Merulla-Bonn, sixth grader at Twelve Corners Middle School
  • Sally Bittner Bonn, Oscar's mother
  • David Merulla, Oscar's father
  • Catherine Liebel, school counselor at Twelve Corners Middle School

This story is reported from WXXI’s Inclusion Desk

Spectrum News

Abigail Hernandez’s legal team filed an appeal Tuesday. That’s after losing a bond hearing earlier this month. Her immigration attorney compares the case to something out of a Lewis Carroll novel.

Hernandez is a 22-year-old woman with an intellectual disability. She made an online threat against East High School in Rochester back in 2018. Though protected under DACA at the time, she is now an immigrant without legal status.

Spectrum News

Abigail Hernandez was denied bond again last week by an immigration judge. Hernandez is a former Rochester City School District student and a young woman with an intellectual disability who has been detained in Batavia and faces possible deportation. 

Hernandez’s attorney, Michael Marszalkowski says there hasn’t been much precedent for someone in the young woman's position.

Noelle Evans

  

The American Council of the Blind, an advocacy group for the rights of visually impaired and blind people, elected new leadership at the organization’s 58th Annual Conference and Convention in Rochester.

Around 1,200 people attended, along with roughly 300 guide dogs at the Riverside Convention Center for the week-long event, which wrapped up Friday.