How outdoor festivals like the Oregon Country Fair can improve inclusion and access
Plus: Former President Trump said disabled people should die, says medical dad nephew; VR could help physically disabled kids exercise; and wealthy Kansas City district still struggles with SpEd
Hello readers!
As I mentioned a few weeks ago, I was out at the Oregon Country Fair this month, moderating a panel discussion on Disability & Fair Access. Thanks to panelists Paralympian Ravi Drugan, his mom Keli Schunk, and activist Maya Scott-Chung, as well as the engaged audience and 55 people who participated in our online survey, we had a robust discussion.
I was asked to write about what we learned for an op/ed that was just published in Eugene Weekly, the alt-weekly newspaper of my hometown. Here’s an excerpt:
The Oregon Country Fair has been a bright thread woven throughout the fabric of my life. My first Fair was in 1983 — inside my mom’s very large tummy — and I have returned almost every year since.
But that will not be the case for my children. My 14-year-old twins were born three months premature. Both are autistic, have ADHD and one is a power wheelchair user due to his quadriplegic cerebral palsy. The Fair has not been a pleasant experience for them during the handful of times we have tried it.
We are not the only ones who have noticed the Fair has work to do around access and inclusion. {…]
Read the full piece, which includes how the Fair and other outdoor festivals can improve accessibility, at this link: https://eugeneweekly.com/2024/07/25/accessing-ocf/
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From TIME (Opinion by Fred Trump III): “My Uncle Donald Trump Told Me Disabled Americans Like My Son ‘Should Just Die’”
When my uncle was elected President, I recognized what a highly privileged position I would be in. I would have some access to the White House. And as long as that was true, I wanted to make sure I used that access for something positive. I was eager to champion something my wife, Lisa, and I were deeply passionate about, something we lived every day: the challenges for individuals with intellectual and developmental disabilities and their families.
Our son William, our third child, was born on June 30, 1999. Within 24 hours, he went from seemingly healthy to fighting for his life in the NICU. Raising him was different from the start. William was diagnosed at three months with infantile spasms, a rare seizure disorder which in William's case altered his development physically and cognitively.
[…]It took 15 years before his medical team could accurately pinpoint the cause of his condition: a KCNQ2 mutation, a genetic misfire that the doctors called a potassium channel deletion.
In our journey with William, Lisa and I had become close to some truly inspiring parents and dedicated advocates who were doing amazing work to improve the day-to-day reality for families like ours. It’s a huge lift for caregivers, not to mention the constant need to mitigate expenses. There are so many different demands and challenges. But there are things that the government can do—some things that can only be done by the government, both federal and state. We wanted to bring knowledgeable people to the White House, to see if we could make a difference.
[…President Trump] sounded interested and even concerned. I thought he had been touched by what the doctor and advocates in the meeting had just shared about their journey with their patients and their own family members. But I was wrong.
“Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.”
I truly did not know what to say. He was talking about expenses. We were talking about human lives. For Donald, I think it really was about the expenses, even though we were there to talk about efficiencies, smarter investments, and human dignity.
I turned and walked away. […]
• From University of Alabama News: “Extended reality improves the mental and physical health of children with disabilities: Here is how”
Researchers at the University of Alabama at Birmingham are using extended reality to help improve the mental and physical health of children with disabilities. Byron Lai, Ph.D., an assistant professor in the UAB Division of Pediatric Rehabilitation Medicine, and the division research team of Ashley Wright, Raven Young and Bailey Hutchinson, combine behavioral change theories, telemedicine and extended reality in their recent research as they work to improve the physical and mental health of children with disabilities.
Children with disabilities are three times more likely to have cardiometabolic disease versus their peers with no disabilities, according to a study in the World Journal of Diabetes. Lai says there currently are very few options for children with mobility disabilities to perform health-enhancing aerobic exercise.
Extended reality provides an enjoyable and accessible form of aerobic exercise to children. Most importantly, extended reality allows them to exercise at a moderate intensity while using only their arms for movement. This helps children with mobility disabilities to get the amount of exercise they need to improve their cardiovascular health.
[…]Lai and the division team are currently working on two other exciting extended reality projects. One study aims to develop a protocol for improving the physical and mental health of pediatric cancer rehabilitation patients, which was funded by the highly prestigious Kaul Pediatric Research Grant of the UAB Department of Pediatrics. Another study, funded by the National Institutes of Health, is confirming whether an aerobic extended reality exercise program can improve blood-related health among children with cerebral palsy. Lai is awaiting review of a large grant that will improve the mental health of children with disabilities through online peer-networking and mindfulness meditative practices.
• From KCUR: “It was a 'destination' for Kansas City students with disabilities. Parents say it still failed them”
[…]The Park Hill School District has top-ranking academic programs and state-of-the-art school buildings. Its tax base has been steadily growing as its property values and population increase, and the median household income is more than $100,000. In 2022, voters approved a $137 million bond measure to build its twelfth elementary school and support other renovations. A school district spokesperson repeatedly noted that it’s considered a destination for students with disabilities, and it touts those programs on its website and social media.
Special education advocates said Park Hill is one of the better districts at meeting student needs – and some families do feel supported. But some students’ negative experiences reveal the challenges of meeting the federal mandate to support and educate students with disabilities in even the best-resourced districts.
Complaints range from frustration about missed academic opportunities to accusations of outright mistreatment.
[…]University of Kansas social work professor Jennifer Kurth studies parent involvement in IEPs, and found parents only talked about 13% of the time in those meetings. When parents did speak up and ask for services for their student, those goals weren’t included in the finished IEP about a third of the time.
“They are the people who know their child best; they know that child better than anybody else at the team,” Kurth said. “They see them morning, noon and night, over many, many years, and they have a real interest in what that life looks like after school.”
She said school professionals do bring necessary knowledge on instructional strategies, but have different priorities.
[…Park Hill mom Nicole said] when yearbooks were published at the end of the school year, children with disabilities weren’t included in pictures with their general education classmates. She asked the school district to integrate students like her daughter in the next year’s edition.
They didn’t, and that was a breaking point for Nicole. She began gathering evidence for a civil rights complaint.
After an investigation, the Office of Civil Rights stated that Park Hill admitted no wrongdoing but offered a remediation plan – students with special needs would be included in yearbooks, assemblies and at lunch tables with their peers.
“I was told verbatim, ‘We're the school district, you're the parent. You decide what happens at home, and we decide what happens at school,’” Nicole said. “The part where they screwed up was they didn't realize that I was born to raise this child.”[…]
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