NCDJ board member Becky Curran Kekula appeared on this morning talk show to discuss tips for treating people with disabilities fairly and respectfully. Part of the discussion focused on the fact that since 70% of disabilities are invisible, many people are nervous to either admit they have a disability, or to speak about someone who may have a disability that isn’t immediately apparent.
Also featured are some of Becky’s favorite tips for working remotely — a particularly relevant topic in the midst of the coronavirus pandemic.
Monique Stamps and Judith Brown are using their personal experiences to advocate for Charlotteans with disabilities.
By Bryant Carter, Q City Metro
Among Charlotte’s diverse population, those who are disabled rarely get the attention they deserve. Monique Stamps and Judith Brown want to use their personal experiences to help change that, especially for people of color with disabilities.
At 16, Stamps was involved in a car crash in Rock Hill resulting in injuries that left her reliant on a wheelchair. Following the accident, she found it difficult growing up with a disability. Doctors warned her against having children, friends and family suggested she collect disability insurance instead of going to college, and the agency that was supposed to be a resource wasn’t very helpful.
Under section 14(c) of the U.S. Fair Labor Standards Act, companies can pay disabled workers below the federal minimum wage. When the local Vocational Rehabilitation office placed Stamps in a job sorting plastic spoons, she fought back.
“They told me I was being arrogant versus trying to get an education and live a full life,” she said. “If that made me arrogant, then so be it.”
In 2000, Stamps earned her bachelor’s degree in social work from Winthrop University. Four years later, she relocated to Charlotte to work at an independent-living facility mentoring others with disabilities. That was her first meeting with Judith Brown, who had come to the center for assistance.
Motivation to change the system
Brown lived in New York City and Baltimore before moving to Charlotte in 2010. She suffered hearing, vision and spinal cord injuries in her late 30s that prevented her from working. Brown also discovered that her two sons were autistic. Doctors misdiagnosed her family, she said, because their symptoms weren’t common in African Americans.
The two women immediately bonded as Black women with disabilities who experienced unfair treatment by social services.
Student journalist Drew Dees is kind but firm when he interviews people for his Florida college TV station.
Please stand up, he instructs them. Don’t crouch down in front of me. I’m not a baby.
He understands that people might not be used to seeing a journalist in a wheelchair — he never saw any on TV when he was growing up — but he demands to be treated the same as any other reporter.
“One of the big barriers in this career field is getting people to … take you seriously,” he said.
A 24-year-old junior at the University of Florida, Dees said he’s had overwhelming support from his family and professors as he pursues a degree in broadcast journalism. His dream of being an on-air reporter and anchor feels even more real now that his insurance company has agreed to provide him with a new $50,000 wheelchair. The Permobil F5 Corpus VS chair will allow him to move from a sitting position to standing with the touch of a button.
“It’s just going to make such a world of difference for me,” he said. “Just to be able to stand up and be able to talk to people on eye level and not have to look up at someone; that’s just the most amazing feeling to me.”
The chair will also allow him to do what’s known in TV news as a standup, where a reporter shares information on camera while standing or walking.
“It’s going to allow me to be more creative, to have more of that demonstrative standup that we look for instead of just being a talking head,” he said.
Dees got a test run of the new chair during a recent fitting to make sure it’s properly adjusted to his body. The chair won’t be ready for several months, but Dees was so excited that he posted a picture on social media of him using the chair to stand up. On a whim, he shared that photo and story in a journalism Facebook group that has about 15,000 members.
WHEN SHANE BURCAW flies on an airplane, he brings along a customized gel cushion, a car seat, and about 10 pieces of memory foam. The whole arsenal costs around $1,000, but for Burcaw it’s a necessity.
The 27-year-old author and speaker — who, alongside his fiancée, Hannah Aylward, is one half of the YouTube duo Squirmy and Grubs — has spinal muscular atrophy, a genetic disorder that affects motor neurons and causes muscle wasting and weakness. The disorder contorted his limbs and he has used a wheelchair for mobility since he was 2 years old. Today, he uses a motorized wheelchair custom-fitted to his diminutive, 65-lb. frame, but to board an airplane, he’s required to give it up. Instead, Aylward must carry Burcaw onto the plane, and from there, transfer him into a child’s car seat, which provides limited support and does not fit his body (thus, the foam).
“When you hear about the injuries and the discomfort and the embarrassment that wheelchair users have faced when flying,” Burcaw said, “it becomes pretty obvious that they’re not being treated in a very humane way with these rules.”
Indeed, regulations prohibit passengers from sitting in their own wheelchairs on planes, and, as a result, 29 years after the passage of the Americans with Disabilities Act (ADA), which dramatically increased American wheelchair users’ access to buses, trains, and other essential 21st century infrastructure, airplanes remain stubbornly inaccessible. For many wheelchair users, the experience of flying is stressful, painful, and sometimes humiliating. For some, it is simply impossible.
Emily Ladau, a disability rights activist, writer, and public speaker, does deep-breathing exercises to manage her anxiety as airport staff take her wheelchair away. She likens the experience to watching someone walk off with her legs. Things aren’t much better onboard. “Airplane seats are designed for the quote-unquote average person,” Ladau said. “I’m nowhere near the quote-unquote average person.” At 4’6”, she does not fit the seat easily. Her legs dangle. She cannot align her posture. “It’s very uncomfortable,” she said.
“You’re basically giving disabled people yet another reason to feel like society wants us shut into our homes and doesn’t want us going anywhere.”
One afternoon last month, as I was crossing a busy four-lane street that runs through the University of Pittsburgh campus, I looked up to see a robot blocking my path.
This wasn’t unexpected. Over the summer, several four-wheeled, knee-high robots had been roaming campus, unmarked and usually with a human handler several feet behind. Recently they’d multiplied, and now they were flying solo. They belonged to Starship Technologies, I learned, an autonomous delivery service rolling out on college campuses across America.
As a chemical engineering Ph.D. student at the University of Pittsburgh who uses a power wheelchair, I figured it wouldn’t be long before I met one of these bots in a frustrating face-off on a narrow sidewalk. What I didn’t realize was how dangerous, and dehumanizing, that scenario might be.
The robot was sitting motionless on the curb cut on the other side of Forbes Avenue. It wasn’t crossing with the rest of the pedestrians, and when I reached the curb, it didn’t move as the walk signal was ending. I found myself sitting in the street as the traffic light turned green, blocked by a non-sentient being incapable of understanding the consequences of its actions.
I managed to squeeze myself up on the sidewalk in a panic, climbing the curb outside the curb cut in fear of staying in the street any longer—a move that causes a painful jolt and could leave me stuck halfway up if I’m not careful.
Beginning in January 2019, airline passengers can search the U.S. Department of Transportation website to determine an airlines’ track record of handling wheelchairs and other mobility devices. A new law sponsored by U.S. Sen. Tammy Duckworth, D-Ill., requires air carriers to be more transparent, obliging them to provide monthly reports that are publicly accessible and which detail the number of wheelchairs, checked bags, and motorized scooters lost, broke, or mishandled during flights.
The law was actually passed two years ago, but the Department of Transportation delayed its implementation until Duckworth–a veteran and wheelchair user herself–urged U.S. Secretary of Transportation Elaine Chao to force airlines to make the data — which they already collect each month — available to the public.
One in four Americans is disabled, according to a U.S. Centers for Disease Control and Prevention survey released Thursday “At some point in their lives, most people will either have a disability or know someone who has a one,” Coleen Boyle, director of CDC’s National Center on Birth Defects and Developmental Disabilities, said in a written statement. Read Binghui Huang’s story here.
Sled hockey is a sport where people with physical disabilities are able to play hockey with the same rules, but different equipment.
Some NHL teams are affiliated with a sled hockey team that adopts their same name and jerseys. The Coyotes are Arizona’s sled hockey team that play at Alltel Ice Den in Scottsdale, Arizona.
“I played pick-up hockey almost every night (in Minnesota) but I did not get to play ice hockey until after I lost my leg,” Mike Schulenberg said, a defensive player on the Coyotes sled hockey team.
Schulenberg lost his leg when he was 25. He had battled for 10 years trying to help his leg recover after getting cancer in it when he was 15.
He played on the Minnesota sled hockey team for seven years before moving to Arizona and joining their team in 2017.
“We used to play against the Arizona team when we were in tournaments when I was in Minnesota so I already knew some of the people, when I moved I contacted them and started skating down here,” Schulenberg said.
Sled hockey is played with two sticks, one in each hand, to hit the puck as well as to help the players push themselves forward in the sleds. The sticks are roughly one third the size of typical hockey sticks, the NHL website states.
The players sit and are strapped into their sleds which have a blade on the bottom to glide across the ice. The game is played with the same rules as hockey, but the equipment is adapted to let people who can’t use their legs play the game, Schulenberg said.
Paul Crane started the team in 2004 and has been a coach as well as a player ever since.
“I help look for funding along with others from different sponsors, that’s what helps run the team so we have ice and have travel,” Crane said.
Since Crane is both a player and a coach he helps to organize the practices and comes up with different drills that can challenge and advance the skills of the team, he said.
In Crane’s 15 years of coaching the team he said that he has seen people join with skill levels from beginner to professional.
He said when teaching people the sport, usually the hardest part is teaching them to find their balance with the sled and learning to maneuver using the sticks.
“Everybody advances differently, you just have to get them in the sled and get them out there, teach them to push and turn and then puck handling and they go on from there,” Crane said.
People of any skill level can join this team whether they have never played before or are a Paralympian. However, only three able-bodied people are allowed on each team, Schulenberg said.
Joe Hamilton is another player on the Coyotes sled hockey team. He said he joined in 2010 when he first heard about the team and had never played sled hockey before.
“I picked it up really quick, it’s kind of like monoskiing, it’s all balance and that is the hardest part,” Hamilton said.
He said he heard about the team through a friend who knew another sled hockey player. Hamilton went to one of the tournament games that same week and said he joined right away.
The Coyotes sled hockey won their first tournament game of 2018 on March 2 against the Los Angeles Kings in Scottsdale.
Schulenberg said despite some rough weekends trying to win games this season, they hope to advance as far as possible in the tournament and hope to take the championship.