disability awareness

Bill Banning Organ Transplant Discrimination Passes Senate

A medical professional carries a human organ for transplant. Courtesy FloridaPolitics.com
A medical professional carries a human organ for transplant. Courtesy FloridaPolitics.com

By A.G. Gancarski, Florida Politics

The Florida Senate just unanimously passed a House bill that ensures people with disabilities can receive organ transplants without fear of discrimination.

Jacksonville Republican Rep. Jason Fischer proposed the bill, claiming that transplant facilitators don’t realize that protections against discrimination covered by The Americans with Disabilities Act also applies to them.

Read the full article about House Bill 1179 here: https://floridapolitics.com/archives/322916-organ-transplant-discrim

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

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/

Apple’s new emoji include disability-related symbols. I’m not thrilled.

Apple emojis
(Stock)

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.

Read Amy Silverman’s full piece for The Washington Post, Apple’s new emoji include disability-related symbols. I’m not thrilled.

ProPublica and PBS Frontline, Milwaukee Journal-Sentinel and Milwaukee PBS win top prizes in 2019 Schneider Disability Reporting Competition

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.

Disability rights leader Marca Bristo dies at 66

Marca Bristo headshot
Marca Bristo founded and led Access Living, a non-profit that advocates for legislation and policies that ensure fair housing and accessible transportation for people with disabilities. Image: a recent headshot of Marca Bristo. (Photo: accessliving.org)

Marca Bristo, one of the most influential advocates for people with disabilities in the U.S., died on Sunday morning after a long battle with cancer. She was 66.

After becoming paralyzed in a diving accident at 23, Bristo dedicated her life to disability rights advocacy and worked tirelessly to secure legal protections and improve quality of life measures for people with disabilities.

Among her many achievements, Bristo played a significant role in getting the Americans with Disabilities Act (ADA) passed. She also founded Access Living in Chicago, a nonprofit that promoted independent living, and in 1993 she was appointed by President Clinton to lead the National Council on Disability. She provided strategic leadership to the organization in that role until 2002.

Click here to read Marca Bristo’s full obituary in the New York Times.

Disability studies program makes its debut at ASU

A poster at ASU publicizes the school's new disability studies program. The poster depicts a light bulb against a black background with the text, "Disability Studies, BA."
A poster at ASU publicizes the school’s new disability studies program. The poster depicts a light bulb against a black background with the text, “Disability Studies, BA.”

Starting this fall, students enrolled in the New College of Integrative Sciences and Arts at Arizona State University can earn a bachelor’s degree in disability studies. The new academic program, which has been seven years in the making, is the first disability studies program of its kind in Arizona.

Theresa Devine, an associate professor at ASU, is spearheading the new program and also played a major role in developing and designing its curriculum. According to the program website, the disability studies major will prepare students “to address injustices, exclusions and misapprehensions regarding disabilities through advocacy and self-advocacy, education, knowledge of the law, and historical awareness.”

Click here to read more about the new disability studies program at Arizona State University.

4 key tips for reporting on and writing about people with disabilities

 

Image shows a hand holding onto the rim of a wheelchair.
(Photo: Pixabay ) “4 key tips for reporting on and writing about people with disabilities,” written by Chloe Reichel, published by Journalist’s Resource on June 26. Image: hand holding onto the rim of a wheelchair.

More than 1 in 4 people living in the United States has a mental or physical disability, according to a 2018 report from the Census Bureau, which collected the data in 2014.

Media reports, however, hardly reflect the fact that 27.2% — or 85.3 million people — nationwide are living with disabilities. Stories about people with disabilities often fall into two broad categories, says Kristin Gilger, who is director of the National Center on Disability and Journalism (NCDJ) and the associate dean of the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.

The first category is what Gilger calls “inspiration porn” — stories about people with disabilities throwing the winning pass for the high school football team or being named prom queen, for example. “It’s well-intentioned, but those stories also can be very exploitative and they are very limited in really getting to the heart of how people live and what they think and how they’re affected by what’s going on in our civic life,” she says.

The second category consists of crime stories, which sometimes mention mental illness — a narrow slice of the kind of coverage the subject deserves. “We still have some work to do in the range and sophistication of [mental illness] coverage,” Gilger says.

Gilger says the lack of disability coverage might stem from a lack of representation in newsrooms. “We haven’t done a very good job of hiring people particularly with physical disabilities, who might need some kind of accommodation in the workplace — people who use wheelchairs, for example, or have hearing or vision limitations or any number of other things,” Gilger notes. “If you don’t have those people in your newsroom, you’re not likely to do a very good job of understanding and pursuing stories that are relevant to those populations … If you’re not comfortable with the coverage area, you just don’t know enough about it, it’s not likely that you’re going to pursue it.”

Amy Silverman, a journalist and NCDJ board member who, in 2018, updated the center’s Disability Language Style Guide, echoes Gilger’s sentiment. “I think that disability is really intimidating to people,” she says.  “First of all, because they don’t want to say the wrong thing. And second, because it’s something uncomfortable to think about.”

To help journalists improve their coverage of people with disabilities, we’re sharing four key tips from Gilger and Silverman.

Read the article by  here.

 

How to write better stories on students with disabilities

Image: indianadisabilityawareness.org A poster for the "I'm Not Your Inspiration" awareness campaign by the Indiana Governor’s Council for People with Disabilities. A portrait-style photo of a boy is juxtaposed against an orange backsplash with text that reads: I'm Not Your Inspiration (I'm Your Classmate).
Image: indianadisabilityawareness.org

Posters for the “I’m Not Your Inspiration” awareness campaign by the Indiana Governor’s Council for People with Disabilities. In one, a portrait-style photo of a boy is juxtaposed against an orange backsplash with text that reads: I’m Not Your Inspiration (I’m Your Classmate).

As journalist and NCDJ disability language style guide author Amy Silverman writes, “Disability journalism is a hot beat right now. But just because you’re covering disability doesn’t mean you’re doing it right.”

In a column for Phi Delta Kappan, a professional journal for teachers, Silverman discusses the challenges of reporting in schools and the ways in which journalists still far short when it comes to telling relevant and nuanced stories about people with disabilities. Read more of Amy Silverman’s column online.

Learn about the concept of “inspiration porn” in this video of journalist and comedian Stella Young’s talk at TEDxSydney: