Inclusion Desk

Five years ago, a retired school administrator from Batavia named Loren Penman had a conversation with her neighbor. What she didn’t know then is that talk would inspire the next phase of her life. 

Penman said her neighbor was hoping that her grandson Ali, who lives in Albany, could get back to Letchworth State Park soon. She told Penman that Ali was a different kid inside the park.

We wrap up our annual Dialogue on Disability Week with a conversation about sports, media, and inclusion. Special Olympics New York is celebrating 50 years. We’re joined by an athlete who has been part of the program for 40 years, as well as RIT photojournalism students who have covered athletes’ stories.

We discuss how sports can help people discover new abilities and strengths, and how effective media coverage can help create a more inclusive society. In studio:

• Patty VanSavage, athlete and member of the Great Tigers Club
• John VanSavage, Patty’s brother and coach with the Great Tigers Club
• Stacey Hengsterman, president and CEO of Special Olympics New York
• Jenn Poggi, assistant professor of photojournalism at RIT
• Josh Meltzer, assistant professor of photojournalism at RIT
• Jackie Diller, photojournalism major at RIT
• Ashley Crichton, advertising photography major at RIT

This story is reported from WXXI's Inclusion Desk.

Dozens of deaf-blind people throughout Rochester are waiting for funding to help them with everyday activities. One of them is sitting in a conference room of a nonprofit called the Center for Disability Rights.

There’s seating for 10 or 15 in the room, but there are about 25 people at this late September meeting, including U.S. Sen. Kirsten Gillibrand.

Gillibrand sits at the head of the table as she hears stories from person after person in Rochester’s disability community. People like Patty Starr, who is deaf and legally blind.

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. 

Dyslexia is a language processing disorder that causes difficulty reading or processing spoken words. 

It affects anywhere between 5% and 20% of the population, according to various estimates.

Courtney Hathaway, a school social worker, was diagnosed with dyslexia when she was in third grade, but she was placed in reading intervention programs as early as kindergarten. 

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.

It’s Dialogue on Disability Week at WXXI. Throughout the week on Connections, we’ll host a series of conversations about inclusion and disability rights.

This hour, we discuss speech therapy with a local mother whose young son has benefited from services provided by a number of community agencies, including the Rochester Hearing & Speech Center. Cooper was diagnosed with several conditions, including Global Body Dyspraxia, Apraxia of Speech, and Sensory Processing Disorder. His mother, Meghan, joins us to share his story and how his communication skills have developed as a result of different therapies. We also discuss the impact of early intervention services and more. In studio:

• Meghan, Cooper’s mother
• Sara Calus, physical therapist, and lead PT/OT clinician at the Rochester Hearing & Speech Center
• Debra L. Cecere, licensed speech language pathologist at the at the Rochester Hearing & Speech Center
• Valorie Stotz, licensed speech language pathologist, and preschool administrator

This story is reported from WXXI's Inclusion Desk.

Deaf refugees often have histories of being oppressed and marginalized in their nation of origin. Advocates in Rochester have organized to help folks adapt and become self-sufficient here in New York state -- folks like Sangita and Purna Kami.

Sangita Kami has been deaf all her life. Her husband, Purna, says he was born hearing, but became deaf after he fell from a tree when he was 8 years old.