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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

5 Things Disabled People are Looking for in Healthcare Plans as the 2020 Elections Approach

Graphic text reads 2020 within a stethoscope.

By  Rooted in Rights

A friend asks:

“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.

Read the rest of Purlang’s article at https://rootedinrights.org/5-things-disabled-people-are-looking-for-in-healthcare-plans-as-the-2020-elections-approach/

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.

Arizona legislator Jennifer Longdon delivers personal story, gun reform plea in Washington

Jen Longdon delivers speech to congress
State Rep. Jennifer Longdon, D-Phoenix, didn’t need to tell congressional lawmakers Thursday about the harm firearms can do: She showed them, when she rolled her wheelchair into a House hearing on the costs of gun violence.

State Rep. Jennifer Longdon, D-Phoenix, was one of eight legislators, advocates and medical professionals who shared sobering stories about the costs of gun violence at a congressional hearing last week in an effort to urge members of the House Ways and Means committee to take legislative action on gun control.

Longdon is paralyzed from the chest down, and her ex-fiancé lives with brain trauma and blindness, after they were struck by five stray bullets as bystanders during a 2004 shooting.

Click here to continue reading Megan U. Boyanton’s story on Cronkite News / Arizona PBS about Longdon’s participation in the hearing, which took place as Democrats press for action on gun-control bills in the wake of mass shootings that took dozens of lives in August.

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 Angle” Helps Reporters Discover Better Stories

Media coverage of people with disabilities is regularly criticized as being too shallow, too stereotypical and too rare.

The National Center on Disability and Journalism is trying to change that with a new series of posts for journalists that offer story ideas and story angles for a wide range of disability coverage.

The series was created by Susan LoTempio, a journalist with a long career writing about, lecturing on and living with disability. She was an editor at The Buffalo News, and wrote a popular “Diversity at Work” column for the Poynter Institute that focused on disability. She is now a member of the NCDJ Advisory Board.

Her new project consists of a series of short posts that will be offered regularly through social media and archived on the NCDJ website. The posts will cover topics from education and health to politics, housing and transportation, all designed to help reporters do a better job of covering this important and growing segment of the country.

Follow us on Twitter @ASUNCDJ or on Facebook.

 

Susan LoTempio
Susan LoTempio, NCDJ Advisory Board Member

Who bears the cost of Flagstaff’s minimum wage increase? Caregivers, for one.

 For now, the impact of the state’s reimbursement law on the city’s finances is uncertain. Image: a photo of a piggy bank surrounded by loose coins.

For now, the impact of the state’s reimbursement law on the city’s finances is uncertain. Image: a photo of a piggy bank surrounded by loose coins. [Photo: Pixabay]
Under a law that took effect today, the state of Arizona can charge the city Flagstaff for added costs to state contracts that will occur as a result of the city’s newly-implemented minimum wage increase. Many care providers cannot shoulder this added cost, however, as they already struggle to pay their employees due to insufficient state funding for their services. Unable to pay more than minimum wage, many companies cannot keep a steady workforce of caregivers. And with fewer providers, there will be fewer opportunities for people with disabilities.

Click here to read this Cronkite News article online.

 

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.