WXXI AM News

Move to Include

AutismUp and the Jewish Federation of Greater Rochester are combining forces to provide support for families of individuals with autism or other developmental and intellectual disabilities.

The two organizations are launching a service to connect families with the support and services they will need following a diagnosis.

Malinda Ruit/WXXI News

People like Jonathan Jackson tend to have an entourage. An entourage can consist of professionals and family members who support someone with disabilities in all kinds of ways.

Often, family members do the bulk of caregiving, and as children grow up, questions arise: What will adulthood look like for them? Who will lead their future entourage? 

We’re following the adventures of composer Glenn McClure, who journeyed to Antarctica in late 2016. During an epic journey funded by the National Science Foundation, the SUNY Geneseo and Eastman professor lived in a tent on an ice shelf and worked with scientists to collect data. He is now using that data as inspiration for new music.

Take a listen:

The composer writes:

Veronica Volk/WXXI News

When Akin Johnson was nearing the end of high school, he was clear about what he wanted to do next. He wanted to get a job.

In recent years, there has been a push to get people with disabilities into the general workforce. But despite these initiatives, some students like Akin who aspire to work are running into a problem. They’re being told they’re not independent enough to make it in a work environment.

School dances, football games, scouts, and gymnastics. These are just a few noteworthy childhood memories for many. They’re also the types of activities that are more enjoyable with a friend by your side. That’s where Rochester’s Starbridge comes in.

The organization offers varied activities in school districts throughout the Rochester region through its TIES program (Together Including Every Student). TIES pairs students with developmental disabilities with peer volunteers who learn how to support participants and positively impact the lives of others. On this edition of Need to Know we learn what makes the program work from the participants themselves.

Classically trained violinist and songwriter Gaelynn Lea has been immersed in music since her childhood. While she says her primary focus in life is on her career as a musician, it was her rise to fame after winning the 2016 NPR Tiny Desk contest when she also took on a new role - that of a disability advocate and public speaker.  During a recent concert in Rochester at Nazareth College, Lea told Need to Know that the underrepresentation of people with disabilities in the arts has given her a new stage to share a powerful message.

A mark of disgrace associated with a particular circumstance, quality, or person. That’s how Oxford Dictionaries defines “stigma.” And it’s that word, stigma, that continues to generate stereotypes and myths about the developmental disease, autism. According to the Centers for Disease Control more than 3.5 million Americans live with an autism spectrum disorder. There are people right here in our community working daily to educate, enlighten and destigmatize autism and a few of them join us on this edition of Need to Know.

We conclude our Dialogue on Disability Week with a conversation about "invisible" disabilities. Our guests share the challenges they face living with multiple sclerosis and epilepsy. In studio:

It’s a diagnosis entwined with an almost unavoidable stigma in our society. A stigma that carries more burdens than most may realize. On this edition of Need to Know we’ll hear from local advocates working to destigmatize autism.

Also on the show, she’s a winner of NPR’s Tiny Desk contest. She’s also a powerhouse musician and public speaker advocating for the rights of individuals with disabilities on the stage and in the world. Don’t miss our interview with Gaelynn Lea.

Lastly, we’ll learn about a program first developed by two parents that’s now creating inclusion and building communities in dozens of school districts throughout western and central New York.

Our Dialogue on Disability Week continues with a conversation about adaptive sports. According to the CDC, nearly half of adults with disabilities ages 18 to 64 do not get aerobic physical activity. Local organizations are helping to change that by offering opportunities in adaptive sports.

We hear the stories of local athletes in those programs. Our guests:

  • Michael Cocquyt, supervisor of SportsNet
  • Jen Truscott, alpine skier
  • David Grace, sled hockey athlete, who participates in many winter sports

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