It began almost playfully, like tiny hiccups in her mind. She would forget she had already changed the sheets and change them again, or repeat a thought in the same breath.
Then the illness amplified.
She grew confused by everyday tasks. Became convinced her parents were still alive and insisted upon a visit. At social gatherings, she was anxious and fearful. She forgot how to sew and cross-stitch. Forgot the faces of her children.
She did remember her name. Alma Shaver. But not her age. Eighty.
And sometimes, she did not know her husband.
He was Richard Shaver, a man whose wife of 60 years had been found by dementia, that thief that robs the minds of 50 million people worldwide. So common, yet so personally cruel — it comes with no road map for those tending to the afflicted.
For a while, Mr. Shaver managed. He would sit next to his wife and rub her hand, her knee, to try to calm the unease. He left notes explaining simple tasks. If she was stuck repeating herself, he asked yes or no questions to break the cycle. Did you graduate in 1957, Alma? Why, yes.
When visiting family, he picked out her clothes, usually the beige sweatshirt with the collar and a bird stitched on the front. He resorted to fast food in the drive-through lane so she wouldn’t have to get out of the car.
By the spring of this year, things had gotten worse, as they always do with an illness that takes and takes and takes. Ms. Shaver had slipped beyond a murky fog that her husband could not join.
Monique Stamps and Judith Brown are using their personal experiences to advocate for Charlotteans with disabilities.
Judith Brown is executive director of Project 70Forward, a nonprofit working to create an inclusive community for Charlotteans with disabilities. Photo courtesy of Judith Brown
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.
Local roboticist teams adapt interactive toys for easier manipulation
By: ASU Now
Two local robotics teams just made the holidays more accessible for 20 local children who face challenges manipulating interactive toys.
Arizona State University’s Desert WAVE and a high school team from Chandler, Arizona, called Degrees of Freedom, joined forces last weekend at CREATE at the Arizona Science Center, to “hack” toys for children with disabilities. Both teams were founded by the local Si Se Puede Foundation.
“When I look at the kids that we are able to help, I see just that: kids,” said Desert WAVE member Jessica Dirks, an ASU sophomore with a double major in human systems engineering and robotics. “They have hopes and dreams and love toys just as much as I do. The only thing separating us is the size of a switch — and that is something I am confident and capable of changing for these fellow dreamers.”
While commercially adapted toys exist for children with physical limitations, they can cost up to four times the retail cost of similar, off-the-shelf toys. The adaptations made during the event cost less than $5 in parts and required basic electrical skills, like soldering, provided by the two teams.
The modified toys help children develop functional skills like problem-solving, offer a foundation for socialization, and perhaps most importantly, have fun with toys.
“My favorite moment of this event was right after I finished adapting my first toy,” said Khushi Parikh, a sophomore at Gilbert Classical Academy and part of the Degrees of Freedom team.
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.”
As we drove to her high school one morning not long ago, I asked my daughter Sophie what words she’d use to describe herself.
“Cute, funny, smart, hard working,” she says.
“Anything else?”
“Lovable.” Literary Hub
Sophie did not use the word retarded, though some people might. I’ve never heard her say it. She’s never heard me say it, either. I don’t use it. Anymore.
To be totally honest, I miss the word.
I imagine it’s a little like how a smoker feels once she’s quit. Relieved to be rid of cigarettes, disgusted that she ever used them. Healthy, now. A better person for it. But sometimes, there’s that sense that nothing else will ever deliver quite the same satisfaction. Years later, I still find myself craving the r-word.
I went cold turkey in 2003, the year Sophie, my second daughter, was born. In the recovery room post C-section, I forced my drugged eyes open long enough to ask my husband Ray, “What are you doing?” and closed them again when he told me he was measuring the placement of Sophie’s ears, a marker of Down syndrome.
When I’m giving disability issues talks, I’m often asked “Because of the ADA and other laws, are things getting better?” My answer is some version of “yes and no”. Here’s this week’s version:
Unsafe situation on nearby corner of busy street
The mile long reconstruction of an arterial road near my house just finished. Drivers are breathing a sigh of relief about not having to drive a couple extra miles to get around the construction. I walked part of the reconstructed sidewalks with a friend who used to teach blind kids and she pointed out that on one corner the truncated domes (bumps) were mis-applied. They’ll launch blind people kiddy-cornered from the northwest corner of the intersection to the southeast corner. I immediately notified a staff member in the city’s engineering department and she replied that she’d turned it over to the project manager and would get back to me with an update when available. Being concerned that soon the snow will fly and it won’t be able to be fixed until next spring or summer, I notified the city manager. He has not gotten back to me yet.
Unreadable obituaries:
When you reach the age I have, you start checking the obituaries as regularly as you have that first morning cup of coffee. Recently the local paper switched their provider of obituaries and they’re no longer accessible to my screen reader. When I contacted the local paper’s representative, they gave me the email of the help desk of the new provider. I emailed them and offered to work with them to fix the problem. No word back yet. My work around is to ask a sighted friend who reads the paper to let me know if anyone she knows is listed in the obits. Not the same, but better than nothing.
Inaccessible library app:
The public library is touting an app, Libby where one can download audio and e-books on your iPhone. I downloaded it and opened it to a “secret” message to Voiceover users (meaning it wasn’t printed on the screen for sighted people to see, but just audio) that the app wasn’t accessible to us and we should use Overdrive app instead. After several emails and phone calls to the public library, they raised the complaint with the library system who will raise it with the vendor. On the company’s website I read that they’re “working hard” to make Libby accessible, no timeline given. I put a comment on the CEO’s blog since I couldn’t find his email, but have no way of knowing if it was read since I haven’t heard back. There’s plenty of responsibility to be spread around on this one: e.g. why did the company knowingly market an inaccessible app? Why did the library system buy an inaccessible product?
Disability emoji’s launched in version 13.2 for iPhones and iPads:
For over a year, we’ve been hearing that some disability emoji were coming soon to iPhones and iPads. They have arrived, including persons with “cochlear implants” “probing canes”, “guide dog” and “service dog”. I’ve never heard a long cane, also called a white cane, called a “probing cane”. Others in the disability community point out that many disabilities including cognitive disabilities don’t get an emoji. I also notice some of the other new emoji give the person a high status profession “nonbinary judge” or such, but we just get a disability. Am I happy? A little! (Insert emoji of slightly smiling face in your mind)
I was reading Kushner’s excellent Nine Essential Things I’ve Learned about Life. He has a theology of “not yet” that I really like. Are things all better on the accessibility front? Not yet, but that may happen someday if we all keep plugging away on it.
Katherine Schneider, Ph.D.
Senior Psychologist, Emerita
Counseling Service
University of Wisconsin-Eau Claire
Author of Occupying Aging: Delights, Disabilities and Daily Life, To the Left of Inspiration: Adventures in Living with Disabilities and a children’s book Your Treasure Hunt: Disabilities and Finding Your Gold
Blog: http://kathiecomments.wordpress.com
“Do you support Medicare For All? Why not? Don’t you believe everyone has a right to health care?”
Your coworker says:
“I think everyone should have healthcare, but how do we pay for it? And even if we can pay for it, how could we ever hope to pass such a huge and controversial plan?”
Meanwhile, your aunt wants to know:
“Do you really want the government in charge of your healthcare? And Is it fair that hardworking, responsible people should have to pay the medical bills for people who don’t even work? I don’t mean you of course …”
These are stereotypes, but nowadays they kind of ring true. They’re the sentiments that every disabled person even slightly engaged in the healthcare debate hears from every corner. That, and accusations of being a shill for “the other side” if you dare to ask critical questions and raise specific concerns as a disabled person. There’s no escape from it either, especially online. Now that 2020 campaigns are underway, you can’t plant a crutch or turn a wheelchair without running into someone’s passionate beliefs about healthcare. And they want you to believe, too. They’ll even point to your disability as a reason why you should support their position on healthcare.
The fact is that people with disabilities do have unique and important priorities that aren’t always addressed in healthcare plans. For people with disabilities, they matter more than ideology, poll-tested rhetoric, or political affiliations. This is the substance of the healthcare debate for the disability community.
On Monday, as part of its IOS 13.2 release, Apple released 398 new emoji, including a sloth, a flamingo, buttered waffles — and several disability-related symbols, including images of people with different skin tones in wheelchairs, a prosthetic leg, a blind person with a probing cane, a service dog and a hearing aid.
Disability advocates are cheering. I’m not thrilled.
As both the mother of a child with a disability and a journalist who covers disability-related issues, I have trained myself to look past labels to consider individuals. Just as the blue-and-white international “handicapped” symbol falls far short of including all people with disabilities, so does this handful of emoji.
The National Center on Disability and Journalism at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication announced the winners of the 2019 Katherine Schneider Journalism Award for Excellence in Reporting on Disability, the only journalism contest devoted exclusively to the coverage of people with disabilities and disability issues.
Journalists working in digital, print and broadcast media from around the world competed for awards and cash prizes totaling $17,000.
First place in the large media market category was awarded to Right to Fail, Living Apart, Coming Undone, an in-depth investigation by ProPublica and PBS Frontline in collaboration with The New York Times. The series, written by Joaquin Sapien of ProPublica and Tom Jennings of PBS Frontline, examined the efforts of New York City to let those with severe mental illnesses live on their own. Reporters obtained about 7,000 pages of records from hospitals, psychiatrists, social agencies and housing programs to reveal how an ambitious housing program left many vulnerable residents in danger. In response to the investigation, a New York federal judge ordered expanded oversight of the housing program.
“’Living Apart, Coming Undone’ was an extraordinarily well-reported story about good intentions — moving mentally ill New Yorkers out of institutions into their own apartments — gone horribly wrong. The story and the photos made the human pain obvious,” said contest judge Jerry Ceppos, former newspaper executive and dean of the Manship School of Mass Communication at Louisiana State University. Sapien and Jennings will receive $5,000 and an invitation to the Cronkite School to give a public lecture on Dec. 2, 2019.
Second place in the large media market category was awarded to Trapped: Abuse and neglect in private care entered by Reveal from The Center for Investigative Reporting. WNYC-FM reporter and Aftereffect host Audrey Quinn’s reporting revealed a history of abuse, neglect and client deaths at facilities run by Bellwether Behavioral Health, the largest group home provider in the state of New Jersey. The award-winning episode showed how even as state after state cut ties with Bellwether, New Jersey continued to send nearly 400 of its most vulnerable citizens and $67 million a year in Medicaid to the troubled company. After the investigation, New Jersey ended its relationship with Bellwether. Quinn will receive $2,000.
Third place in the large media market category was awarded to Unfit by Radiolab. Produced by Matt Kielty, Pat Walters and Lulu Miller, the episodes explore how people with disabilities were targeted for sterilization during the early 20th century as a form of eugenic genocide, but laws permitting forced sterilization have quietly stayed on the books. While the language is now different — swapping terms like “feebleminded” for “mentally incapacitated” — there are still 23 states that allow for a person with intellectual disabilities to be sterilized against their will if a court decides it is in their “best interest.” The podcast episode reached millions of listeners and hit the top 10 on the iTunes charts. Creators of “Unfit” will receive $1,000.
Honorable mention in the large media market category was awarded to The parents said it was a special needs bed. The state said it was a cage by Mary Jo Pitzl of The Arizona Republic. This story exposed the confusion – and potential harm – that happens when bureaucracies can’t see past their rule books to understand the intricacies of the fragile populations they are charged to protect. Pitzl explored the Wadsacks’ ordeal to win approval for caregivers to use a specialty bed for their developmentally disabled daughter and how the interpretation of a rule took years to untangle. Pitzl will receive $500.
In addition to Ceppos, the judges for the large media market category were Tony Coelho, a former six-term U.S. congressman from California and the primary sponsor of the Americans With Disabilities Act; Daniel Burke, CNN religion editor; and Amy Silverman, a Phoenix-based writer, editor and teacher.
First place in the small media market category was awarded to You’re Not Alone, a collaborative documentary between the Milwaukee Journal Sentinel and Milwaukee PBS. The program followed the lives of four young people from Wisconsin as they navigated mental health challenges. The documentary was built on USA Today Network reporter Rory Linnane’s “Kids in Crisis” series. The film encourages young people to seek help for mental health challenges, while calling for greater support from adults and health systems. The final product included a suicide prevention toolkit at jsonline.com/yourenotalone. The film premiered at a Milwaukee high school where 11 local mental health organizations staffed resource tables and offered on-site counseling for an audience of more than 200.
“You’re Not Alone” was beautifully produced and stunning visually. Having the young people speak their truth in their own words was powerful. There is no doubt in my mind that the result of this work is living up to its name, providing strength to those with disabilities (and) reassuring them that you are not alone,” said contest judge Susannah Frame, chief investigative reporter for KING 5 Television in Seattle. Liannane will receive $5,000 and is invited to the Cronkite School to give a public lecture on Dec. 2, 2019.
Second place in the small media market category was awarded to The Post and Courier of Charleston, South Carolina, for We dined with wheelchair users at 4 of Charleston’s top lunch spots. Here’s what they experienced. Food critic Hanna Raskin had not fully considered the obstacles posed by physical barriers until a group of wheelchair users invited her to a meeting. The diners were concerned about not being able to fully enjoy the city’s celebrated food scene. Raskin proposed that the group visit four celebrated local restaurants at random while she documented their experiences. The end result was a piece highlighting numerous accessibility issues. The restaurant owners were swift to respond, pledging to address the issues. Raskin will receive $2,000.
Third place in the small media market category was awarded to Criminalizing disability by Ed Williams, a reporter for Searchlight New Mexico. Williams asked why so many of the state’s special education students ended up in police custody. In collaboration with the local ABC news affiliate, Williams interviewed more than 300 parents, including the mother of Sebastian Montaño, a smart, promising but behaviorally challenged youngster who never received legally required services for his autism. The New Mexico state Legislature conducted hearings and directed the Legislative Education Study Committee to investigate. Williams will receive $1,000.
Honorable mention in the small media market category was awarded to Fighting for Personal Attendants at the Texas State Capitol by investigative reporter Edgar Walters of The Texas Tribune. When Walters learned that Texas lawmakers planned to spend $23 million on a negligible pay raise for personal attendants, he connected with advocate Susie Angel, a woman living with cerebral palsy. His piece explored Angel’s quest for additional funding for her personal attendant who allows her to live independently and has become a close friend. Walters will receive $500.
In addition to Frame, the judges for the small media market awards were Jennifer LaFleur, data editor for American University Investigative Reporting Workshop; Susan LoTempio, NCDJ Advisory Board member and former newspaper editor; and Leon Dash, a Pulitzer Prize-winning journalist who is a professor of journalism at the University of Illinois.
The Katherine Schneider Journalism Award for Excellence in Reporting on Disability was established in 2013 with the support of Schneider, a retired clinical psychologist who has been blind since birth and who also supports the national Schneider Family Book Awards. The reporting contest is administered by the National Center on Disability and Journalism at the Cronkite School.
