WXXI AM News

Move to Include

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

The independence that sports can bring to people with disabilities is something that is explored in a documentary about a wheelchair basketball team that will be shown in Rochester this week.

It’s called The Rebound, and it will be shown Wednesday evening at The Little Theatre, followed by a discussion afterward including a Skype interview with the film’s director. WXXI and the Al Sigl Community of Agencies are partnering for this free screening.

Magical Storybook Travels

Nicole and Chris Thibault dreamed of having a family of avid travelers. And when they had their first son, Tristan, they started making that dream come true: A cruise when he was 6 months old, his first trip to Disney at 1 1/2.

But a year later, something changed. The three of them were standing in line to enter Disney World.

Editor's note: This report includes graphic and disturbing descriptions of sexual assault.

In the sex education class for adults with intellectual disabilities, the material is not watered down. The dozen women and men in a large room full of windows and light in Casco, Maine, take on complex issues, such as how to break up or how you know you're in an abusive relationship. And the most difficult of those issues is sexual assault.

We begin 2018's Dialogue on Disability Week with a conversation about autism. New research published in JAMA indicates that the rates of autism spectrum disorder among U.S. children remained stable from 2014 to 2016. That's a change from earlier studies, which suggested that autism rates rose steadily over the past 20 years. The authors of the recent study pointed to changes in diagnostic criteria, more public awareness, and more children being referred to doctors as among the principle reasons for the earlier increases.

Yet, as physicians, advocates, and parents are quick to point out, the stabilization shouldn't detract for exploring new treatments and adaptive experiences for children and adults with autism spectrum disorder. This hour, we discuss a range of issues related to autism, and explore options for care in our community. Our guests:

  • Dr. Susan Hyman, M.D., chief of developmental and behavioral pediatrics at UR Medicine's Golisano Children's Hospital at Strong
  • Mary Walsh Boatfield, CEO of CP Rochester, Happiness House, and Rochester Rehabilitation, and co-founder of the Golisano Autism Center
  • Michelle Maney, parent of a teenager who is on the autism spectrum
  • Sandra Erb-Petruccione, parent of an adult who is on the autism spectrum

Editor's note: This report includes graphic and disturbing descriptions of assault.

Pauline wants to tell her story — about that night in the basement, about the boys and about the abuse she wanted to stop.

But she's nervous. "Take a deep breath," she says out loud to herself. She takes a deep and audible breath. And then she tells the story of what happened on the night that turned her life upside down.

"The two boys took advantage of me," she begins. "I didn't like it at all."

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