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disabilities

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

What do young adults with intellectual disabilities and their caregivers need to know as they prepare to exit the school system? It's a question that will be addressed at an upcoming conference hosted by Nazareth College and AutismUp.

We're joined by conference organizers and participants to discuss medical care, housing, employment, and more. In studio:

  • Rachel Rosner, director of education and support services for AutismUp
  • Cyndi Kerber Gowan, lecturer in education at Nazareth College and faculty liaison for LifePrep@Naz
  • Jake Collier, self-advocate

NPR investigations correspondent Joe Shapiro joins us in studio. He’s in Rochester to speak at the American Academy of Developmental Medicine & Dentistry Conference. We talk to him about the state of journalism, and his work covering issues that impact people with intellectual and physical disabilities. In studio:

  • Joe Shapiro, NPR investigations correspondent
  • Dr. Steve Sulkes, M.D., professor of pediatrics at Golisano Children's Hospital at Strong
  • Dianne Cooney Miner, associate vice president for community engagement, and dean at the Wegmans School of Nursing at St. John Fisher College

This story was produced by WXXI’s Inclusion Desk, focusing on disabilities and inclusion.

We get an update on the “Spread the Word to End the Word” campaign, which seeks to eliminate the use of the "r" word and end discrimination against people with intellectual disabilities. The campaign has evolved to become "Spread the Word: Inclusion." 

Local organizers share their perspectives on the campaign's success, and discuss efforts to promote inclusion in our community. In studio:

  • Lindsay Jewett, area director for Best Buddies Rochester
  • Amy Cawley, sophomore at Webster Thomas High School and Best Buddies Chapter President
  • Rebecca Ritter, Best Buddies Global Ambassador, and student at Hobart and William Smith Colleges
  • Jaxon Smith, senior at Nazareth College and Best Buddies Chapter President

This story is reported from WXXI’s Inclusion Desk

New York State has launched new, optional ID cards for people with intellectual and developmental disabilities. The goal is to help law enforcement and first responders better interact with people who may not be able to effectively explain the situations they are in.

The cards come with mixed reviews, especially on how effective they may be. We explore the issue with our guests. In studio:

We're joined by former Senator Tom Harkin of Iowa, who authored the Americans with Disabilities Act. 

Research shows that among similarly sized cities, Rochester is the single worst in the country when it comes to employment and poverty for people with disabilities. 

Harkin is the keynote speaker for the upcoming ROC EmployABILITY conference, which is focused on increasing employment opportunities and reducing poverty among people with disabilities. We preview that conference. In studio:

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:

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

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:

Stephanie Woodward was one of 20 Rochester-area disability rights activists arrested while protesting the Senate health care bill in Washington, D.C. last week. The group, called ADAPT, staged a “die-in” outside of Senator Mitch McConnell’s office.

Woodward is the director of advocacy for the Center for Disability Rights. She says the bill’s proposed cuts to Medicaid would be devastating to people with disabilities, and without it, people who now live independently would be forced into nursing homes.

Woodward joins us in studio to talk about her experience in Washington, and what she hopes to see with the health care bill.

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