Several school children of the Frontier Central School District in Hamburg, New York, have formed a group known as “Go Baby Go Pit Crew. Operation Gillie Mae,” the aim of which is to outfit a Power Wheel such that it accommodates Gillie Mae’s disability. Gillie Mae was born with Angelman Syndrome, a rare condition that results in delayed motor and speech development and seizures. The six-man crew is working to modify a Jeep Power Wheel for Gillie Mae, and plans to visit the Fisher Price headquarters to further refine their design with help from the pros.
People with Disabilities
When Isabel Bueso found out she was going to be deported to her native Guatemala in just 33 days she was devastated. Not only because it meant leaving the US, but because leaving would have meant a death sentence for her. Bueso has mucopolysaccharidoses, a rare genetic disorder for which she receives enzyme treatment in the US, but the treatment is unavailable in her home country. Rather than give up, she decided to fight back. "I have to speak up and say this is not right. This can't be happening and someone needs to hear this," she said. Her lawyer brought attention to her plight and that of others, and she spoke to Congress about it. Representative Mark DeSaulnier ended up introducing a bill that would stop Beuso and her immediate family’s deportation, but she will have to reapply for extended amnesty in a few years.
University of Illinois professor Meghan Burke has a lot of experience in assessing restaurants for accessibility. Her son was diagnosed with cerebral palsy at two, and she also teaches classes on physical disabilities and assistive technology. With the help of her students, she has launched a website to help would-be patrons take the guesswork out of deciding where to go based on the space’s accessibility. The website, Access Urbana-Champaign, rates restaurants on their accessibility based on features like sufficient knee clearance under sinks and tables and alarms that can be heard as well as seen
The enormity of the Eiffel Tower and the jaw-dropping tiling of the Taj Mahal make most tourists dumbstruck with awe. But what happens if you can’t see them? Visually impaired tourists are now getting a small taste of the experience of seeing these man-made marvels, thanks to strategically placed scale models. The models are usually made of bronze and sometimes include information about the depicted monument in Braille. One of the most productive model creators, Egbert Broerken, can count over 100 models of European architecture to his name.
adeline Delp, former Ms. Wheelchair USA, was terrified to put herself out in the spotlight the first time she participated in a beauty pageant. “It was one of the most difficult and uncomfortable experiences that I’ve ever had,” she wrote in a story for Glamour magazine. However, determined to show the world that all women, able-bodied or not, are beautiful, she continued to compete and recently placed in the top 15 in her latest Miss Carolina USA competition. She’s now focused on winning the top crown of Miss USA. Madeline informed People magazine of her grand plans, stating “Is Miss USA ready for someone in a wheelchair? I believe so… maybe they won’t get it this year, but I certainly hope that is a barrier broken soon.”
Johnathan Pinkard is a 27-year-old high functioning man with autism who also happened to need a new heart. Lori Wood, a nurse at Piedmont Newnan Hospital in Georgia, had no idea Johnathan even existed before he collapsed at work and was rushed to her hospital. After learning that Johnathan was not eligible for a heart transplant (he did not have anyone to care for him afterwards, which is one criteria for eligibility), it took Lori just two days to decide to legally adopt him and to care for him post-surgery. "I had to help him. It was a no-brainer...He would have died without the transplant," she said simply.
Adaptive Action Sports is not sitting on the sidelines when it comes to helping athletes with disabilities improve at their game. Executive Director and Co-Founder Daniel Gale is proud to offer camps and training for athletes interested in stand-up paddle boarding, snowboarding, mountain biking, and skateboarding. Zach Miller, a 20-year-old para snowboarder with cerebral palsy, has been training with Adaptive Action Sports for six months. His goal is to compete in the 2022 Beijing Winter Games. Gale is proud of all the athletes who train at the non-profit, including Zach. “My goal with all of the athletes is to really, genuinely improve quality of life. If we can do that through putting them on the U.S. team, that’s awesome,” he said.
Democratic presidential hopeful Beto O’Rourke has a sister with an intellectual disability, Erin, who inspired him to come up with a robust disability plan intended to address shortfalls in inclusive standards across the United States. Two mainstays of his plan include changes to the Affordable Care Act to ensure people have access to medical equipment like wheelchairs and canes when they need them (as well as the resources to maintain them), and modifications to the Air Carrier Access Act that would give the option to people who believe they have been discriminated against to pursue legal action. In a recent tweet he noted “...For too long, we have overlooked people with disabilities. That must change.”
Domino’s Pizza has been embroiled in litigation for well over three years against plaintiff Guillermo Robles, who alleges its website and app make it impossible for a person using a screenreader to order a pizza online. After the Ninth Circuit Court of Appeals upheld its ruling in favor of Robles (that the ADA does in fact apply to websites) in January, Domino’s petitioned the Supreme Court to hear the case. On Monday the Supreme Court decided not to hear it, and did not supply any comments or dissent to justify the rejection. In it of itself, this is not a tacit approval of the Ninth Circuit’s decision, but the rejection does imply to US companies that are fighting digital accessibility lawsuits that the ADA will continue to apply to digital properties and content for the foreseeable future.
Becoming paralyzed from the waist down at 23 after a diving accident was a turning point in Marca Bristo's life. After seeing how patients with disabilities were treated at the hospital where she worked, she became an advocate for them, fighting for equal rights across multiple platforms. She helped co-found Access Living, a non profit organization that helps people with disabilities maintain independence, and led it for many years. She also joined other disability rights leaders to help pen the ADA, and Bill Clinton even appointed her chair of the National Council on Disability, a role she held for eight years. She succumbed to cancer at age 66 on Sunday, August 31.