WXXI AM News

dialogue on disability

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:

freeimages.com/Jos van Galen

Some 2,000 Rochester area residents with disabilities are in need of housing.

And that number only reflects individuals who get services through one state agency, the New York State Office of People With Developmental Disabilities.  The overall need for affordable, accessible housing is even greater.

This has always been an issue, but it's become a bigger problem in recent years, as more people are interested in living independently.

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.

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

We discuss a difficult, often grim, but vital issue this hour: when people with disabilities are murdered by their caregivers or family members. According to the Autistic Self Advocacy Network, more than 400 people with a disability were murdered by a family member or caregiver in the last five years. In court, perpetrators often receive lighter sentences, and when these crimes are covered in the media, they are frequently described as "mercy killings."

Disability rights advocates are calling for change. They say when the justice system and the media handle murders of this nature in these ways, they dehumanize victims. We discuss the impact on the disability community with our guests:

An emerging model called self-direction is enabling people with disabilities to live more independent lives. Self-directed individuals choose where they live, they design their own days and activities, and they have more control over the funding they receive for daily support services.

While the model has produced positive results for people in our community, advocates say not everyone knows about it or understands the process well. We discuss what self-direction means, and we hear from people in our community who are navigating the process. Our guests:

We learn about two local organizations that provide recreational activities for people with disabilities: the Challenger Miracle Field and EquiCenter. Our guests share their experiences and the impact these organizations have had on our community. In studio:

  • Ron Kampff, president of Challenger Miracle Field of Greater Rochester, and coach for the Webster Challenger Team and the Rochester BEEP Baseball Team (Rochester Pioneers)
  • Nico Santiago, Challenger player
  • Karen Werth, operations and therapeutic riding instructor for EquiCenter
  • Barbara Stickney, veteran and participant at EquiCenter

This conversation is part of WXXI’s Inclusion Desk, spotlighting issues related to disabilities. The WXXI Inclusion Desk is part of Move to Include, a partnership to encourage thoughtful discussion about issues of inclusion and the differently-abled.

An international disability rights activist known for his work in native Saudi Arabia is in Rochester. Mohammed Saad joins us to talk about his work to make a variety of every day life experiences more accessible for the visually impaired, including cooking, using technology, and event photography. He's our guest for the hour. 

Pages