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A Mom Laments Limited Employment Prospects For Daughter With Down Syndrome

Sophie Silverman dancing ballet.
Amy Silverman’s daughter Sophie, who has Down syndrome, wants to be a dance teacher. (Courtesy Amy Silverman)

 

By Amy Silverman, Here & Now

Amy Silverman‘s daughter Sophie wants to be a dance teacher. But Sophie has Down syndrome and the opportunities for meaningful employment for people with intellectual disabilities are minimal.

This segment aired on January 1, 2020.

Listen to the radio piece here: https://www.wbur.org/hereandnow/2020/01/01/employment-prospects-intellectual-disabilities

‘People Should Kill You, If It Becomes Too Much’

Interlocked hands

 

By , The Cut

This weekend, the New York Times ran a long piece about a 79-year-old man named Richard Shaver who murdered his 80-year-old wife, Alma, who suffered from Alzheimer’s disease, and then killed himself. In a storytelling decision that has infuriated disability-rights activists, the piece was written not as a violent-crime story, but as a poignant romance. As the story’s writer, Corina Knoll, tweeted: “A man shot his wife with Alzheimer’s, then killed himself. I wanted to understand their story. Turns out, it was one of love.”

The piece took readers through the Shavers’ love story, describing how their courtship began at a high-school dance in 1956 and lasted for over 60 years, during which time they raised three daughters. “They were absolutely soul mates — crazy about each other,” says a neighbor quoted in the piece. After Alma was diagnosed with Alzheimer’s, their daughters tried to intervene, but, as they told the Times, Richard insisted he was “taking care of it” and refused to take their advice or assistance. This June, he crawled into bed while she was sleeping and shot her, then himself.

The Shavers’ children seem eager to read their father’s act as one of tenderness, which may have affected the way Knoll framed the story. “So common, yet so personally cruel — [dementia] comes with no road map for those tending to the afflicted,” she writes. The piece doesn’t make it clear whether Alma might have once made an end-of-life plan with her husband, and it could be impossible to know now that both parties are dead. But the critics who found fault with the piece say the way the story is told exemplifies everything wrong with how the media covers crimes against disabled people.

Read the full article here: https://www.thecut.com/2019/12/the-problem-with-the-times-murder-suicide-love-story.html

Sweethearts Forever. Then Came Alzheimer’s, Murder and Suicide.

Mr. and Mrs. Shaver dancing

“They were absolutely soul mates.”

By 

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.

Read the full article here: https://www.nytimes.com/2019/12/29/nyregion/alzheimers-murder-suicide.html

These women are making Charlotteans with disabilities a priority

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.

Read the full article here: https://qcitymetro.com/2019/12/20/these-women-are-making-charlotteans-with-disabilities-a-priority/

A new wheelchair will help this University of Florida student journalist do stand-ups — literally

Drew Dees in front of a camera.
University of Florida student journalist Drew Dees works on a video project with UF’s creative services team. (Photo courtesy Drew Dees)

By: , Poynter

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.

Read the full article here:https://www.poynter.org/reporting-editing/2019/a-new-wheelchair-will-help-this-university-of-florida-student-journalist-do-stand-ups-literally/

Holiday hackathon makes toys accessible for children with disabilities

Mickey mouse, doll, elephant and flamingo toys

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.

Read the full article here:https://bit.ly/2M8fII7

The Physics (and Economics, and Politics) of Wheelchairs on Planes

Flying can be stressful, painful, or simply impossible for wheelchair users. Critics say it doesn’t have to be that way.

 Michael Schulson, Undark

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.”

Read the full article here: https://undark.org/2019/12/03/making-flying-safe-accessible/?fbclid=IwAR12anC3a_5uwrH1MBh9q4wRUi6txearETo1yedwgZBm4LGfTmO079kf9vA

 

My Fight With a Sidewalk Robot

A life-threatening encounter with AI technology convinced me that the needs of people with disabilities need to be engineered into our autonomous future.

A mid-sized robot on a sidewalk
A Starship Technologies commercial delivery robot navigates a sidewalk. Wolfgang Rattay/Reuters
PERSPECTIVE

By EMILY ACKERMAN

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.

Then I did what a lot of upset people do: I sent off a thread of angry tweets about the experience.

Read the full article here: https://www.citylab.com/perspective/2019/11/autonomous-technology-ai-robot-delivery-disability-rights/602209/

Learning to Unsay the R-Word

Amy Silverman on Changing the Way a Culture Speaks

Photo depicting a blank chalkboard with an eraser and piece of chalk on its ledge.

By Literary Hub

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.

Read Amy Silverman’s full essay here:https://lithub.com/learning-to-unsay-the-r-word/

State of Access: This Week’s Version

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:

  1. 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.
  2. 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.
  3. 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?
  4. 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