Coverage: Ruderman Report on Media and Filicide

Two stories this week on the Ruderman Family Foundation report on the media coverage of filicide of disabled people. The report, for which I was the lead author, found:

Approximately once a week, a person with a disability is murdered by a family member or caregiver. We have found that when these murders are covered, they are often called “mercy killings” which perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life. Such coverage simply must stop. It is dehumanizing and dangerously continues to stigmatize disability. We’ve found that the voices of the victims are nearly always erased to favor the perspectives of the perpetrators. This too must stop.

A disabled person is killed by their caregiver at least once a week. There are patterns in these cases. There are patterns in how we talk about them.

David Lohr, senior crime reporter for Huffington Post wrote "How Murder Victims with Disabilities get Blamed for their own Deaths." He did his own reporting on the Alex Spourdalakis case (a Chicagoland murder, with which we also lead the white paper) and framed the findings this way:

The study found that taking a life ― something typically not tolerated in society ― is sometimes treated as acceptable in the justice system when the victim had a disability. Killers are commonly portrayed as angelic caretakers who killed out of mercy, or who could no longer bear the burden and snapped. Those perpetrators often face less than vigorous prosecution, the study found.

“The message is that murder is a reasonable response to disability, and courts will treat you lightly if you murder a disabled child, parent or spouse,” David Perry, a disability rights activist and author of the Ruderman report, told The Huffington Post.

Vilissa Thompson, an advocate and licensed master social worker from Winnsboro, South Carolina, said there is an obvious discrepancy in how the law and the public treat parents and caregivers accused of killing someone in their care.

“When someone, especially a child, is killed, it is called a hideous crime, and there is an urgency to punish the person responsible,” said Thompson, a contributor to the Ruderman report who was born with osteogenesis imperfecta, also known as brittle bone disease. “But when it comes to the disabled kids, there is this gross level of excusing that behavior.”

In Paste, Annamarya Scaccia summarized the report, then published a Q&A with me.

Paste: That was the one thing that stood out to me—that none of the reporters had any thought to contact a person with a disability.

Perry: It goes against basic journalistic practices. And I think it’s because most journalists don’t see disabled people as an identity group and the disability rights community as a group you would reach out to. Journalists are just not instinctively picking up the phone and calling the Autistic Self Advocacy Network or the Arc or United Cerebral Palsy or whoever it might be. That needs to become an instinct for journalists across the country.

This is one of the lines I keep repeating. Journalists know how to report. We are supposed to go to all sides for comments and framing, but when it comes to disability, that happens pretty rarely.

Grateful to these reporters for covering our study. More work ahead!

Questioning Trump's Sanity - Fair Game?

Donald Trump is an erratic man with poor impulse control, a temperament that belong nowhere near the White House, and self-centered to a degree unusual even among politicians. He lies routinely.

But does he lie pathologically? Are his lies related to a mental health condition which makes it difficult for him to tell the truth? Is his erratic and bullying conduct related to a psychological condition which could be diagnosed? Plenty of "Twitter psychologists" (not as many armchairs any more) have wondered if he has dementia, which sounds terrible, but we did have a president whom many people believe was entering early stages of Alzheimers while still in office.

I am no fan of Donald Trump. I want him soundly defeated. Do we have to call him crazy to accomplish that?

For months I've been saying no, and that's still basically my position, but last night I had a long conversation on Twitter with, among others, the brilliant political writer James Fallows, science writer and professor Emily Willingham, and philosopher and disability rights journalist Elizabeth Picciuto. We all agree that Trump doesn't have the temperament to be president. We disagree over whether we needed to frame temperament-issues in terms of mental health.

Here's the storify of the whole thing. I keep thinking about Thomas Eagleton, the VP candidate booted from the race because he dared treat his depression. The use of casually stigmatizing pathological language as a way of criticizing Trump's conduct still feels to me like it's out of bounds.

Please pay particular attention to Deanne Shoyer, who identified herself as having a mental illness, and her objections.

@ejwillingham I'll defer to your expertise Emily but as a lay person (& someone w MI) I find it stigmatizing @Lollardfish @JamesFallows

— Deanne Shoyer (@OMum22) July 28, 2016

But the key here is the word "casually." If there are genuine concerns about Trump's conduct that suggest mental health issues - and of course he's not releasing contemporary medical records, unlike every other presidential candidate in recent history - Willingham made the argument that we can't simply take mental illness out of the frame of discussion. Silencing, she argues, is also stigmatizing. 

Posed: treating any discussion of possible MI as explanatory, no matter how rational, as hands off enhances stigma https://t.co/5UxSbJCKW8

— Emily Willingham (@ejwillingham) July 28, 2016

So we end up, as so often, looking for nuance. When Trump wildly contradicts himself, flies in and out of rages, says things that are patently untrue, and so forth - I don't think I can flatly tell reporters: Any discussion of mental health is forbidden!

What I'd like is for reporters, and all of us, to be intentional about the way we use language related to disability (and everything else). Being thoughtful about language will solve a lot of these issues related to stigma and discourse, and then we can just focus on beating Trump.

UPDATE: Read Finn on "Wrong does not mean crazy."

Should Reporters Describe Disability?

Yesterday, the official AP Stylebook Twitter Account responded to a query about describing wheelchair users. Here's the exchange:

@APStylebook Phrase "wheelchair user" is in 2015 handbook, but I still see "confined to"/"disabled" used. How does this change? #RaganChat

— Alison Carville (@AlisonCarville) June 21, 2016

We suggest not describing an individual as disabled or handicapped unless it is clearly pertinent to a story. https://t.co/ZBXtsS3MCo

— AP Stylebook (@APStylebook) June 21, 2016

I understand what the AP Stylebook is trying to do here, but I'm concerned it leads to disability erasure. Having spent a few years now carefully tracking media references to disability and police use of force, I've noted that disability often quickly drops out of stories in ways that obscure the true scope of the problem.

There are, of course, many times in which referring to disability wouldn't be appropriate and might even be stigmatizing. For example, let's assume Jane is not disabled and Joe is disabled.

"Jane's neighbor, Joe, says she was always quiet."

There's no need to discuss disability status here, right? 

"Jane's neighbor, Joe, who uses a wheelchair, notes that Jane's tendency to leave shards of broken glass on the sidewalk was a source of tension."

Obviously, you've got to mention the disability in that case, as relevant.

Here's what I've come up with as a guideline, operating from the principle that disability functions as a core marker of identity, and that journalists deal with this question all the time (whether to describe someone's race, country of origin, sexuality, etc.):

If you would describe other markers of identity in a story (race, sexual orientation, religion, etc.), also describe disability. If you would not, then only describe disability if it's otherwise directly pertinent to the story.

What do you think?

Upcoming Webinar: Disability and Journalism - Telling Better Stories

I'm very excited to announced that I will be joining with Lawrence Carter-Long to offer a free webinar on disability and journalism on May 11, via The Poynter Institute. 

There are 56 million Americans who identify as disabled. Tens of millions more are connected to disability as direct caregivers or family members. Yet journalism about disability is too often stuck in decades-old models that imagine disability only as tragedy, a personal medical problem or something to be overcome. Thankfully, the historical divide between newsrooms and disability activist communities is rapidly becoming an a thing of the past.

In this webinar, we’ll offer better ways to tell stories about disability as identity, reveal key resources for reporting on these stories and see the disability angle hidden within almost every beat.

WHAT WILL I LEARN:

• How to avoid common mistakes that dehumanize disabled individuals
• Where and how to find untold stories about disability in America
• The benefits of understanding disability as identity rather than as a collection of medical concerns
• How to connect disability to other stories in other communities in order to practice intersectional journalism

WHO SHOULD TAKE THIS COURSE:

Every major beat has a disability angle, likely one you haven’t explored. Politics, metro, sports, health, entertainment, even weather (we could tell you stories about snowstorms, Hurricane Katrina and wheelchair-accessible trailers) — reporters who work in any of these fields, and the editors who oversee newsrooms, will find a wealth of new stories at their fingertips once they begin to engage with disability.

Please spread the word. Share the link. We'll be reaching out to people across the disability community to learn more about what YOU want to see journalists do better, but please leave comments, end me emails, tweets, Facebook messages, anything.

I'd especially like to encourage you to think about local journalists. Too often we focus on the big nationals - and that matters, as their patterns shape local practice. But while I follow the nationals carefully, I don't know what's being said or reported on in your particular community. Send links! Send commentary! Send anything.

Thanks.

Two Ethical Futures for The Mighty

The Mighty is a well-funded website that publishes personal essays about disability. Narratives tend to be parent-driven or illness-driven, but they throw a huge amount of content out at the internet without much editorial oversight. The editors search through the vibrant disability-related blogosphere and ask to republish essays for free as well as publishing essays written directly for their site. As far as I know, they pay no one but the editors, but have substantial venture capital backing and of course are trying to build ad revenue.

There are lots of good pieces on the site, many of them published by authors whose work I adore. Most of it, though, falls into either the positive or negative categories of inspiration porn: feel-good or cathartic tragedy.

On 12/20 they published, "Meltdown Bingo" (cached link), a disability-shaming piece. People reacted negatively, and the editors took it down and issued this apology.

Our goal on The Mighty is to give people a platform to share their stories. It’s a simple objective that’s proven challenging for everyone on our staff because we host thousands of perspectives and opinions, from both disabled and able-bodied writers. We don’t expect everyone to agree on every post. In fact, we like when our contributors’ stories start important, respectful conversations. What we don’t want is to cause harm. Here is where I missed the mark when deciding to publish this submission.

That’s on me. I personally apologize to anyone we hurt with this post. It was not our intention, but we need to take responsibility for our actions. Our community called us on this post almost immediately. Thank you.

This isn’t the first time The Mighty has been rightfully accused of ableism.

And to deny that we’ve been ableist would be, well, ableist.

I don't actually think "give people a platform to share their stories." It's to make money while feeling good about themselves.

In their apology, the editor asked three questions:

• What improvements do you want to see made on The Mighty?
• Which websites and writers are covering this space the right way?
• What are we doing right? If we know this, we can do more of it.

If you follow the hashtag #CrippingTheMighty (started by Alice Wong), you'll see lots and lots of answers to all three questions, but especially the second one. Here's my response.

WOULDN'T THIS HAVE BEEN A GOOD QUESTION TO ASK BEFORE LAUNCHING YOUR WEBSITE COVERING DISABILITY ISSUES?

If you read the "why we created The Mighty" page, the editors discuss their process:

Over the last several months, I’ve bought a lot of drinks and dinners for friends and colleagues. I wanted to pick their brains. These are talented people I respect and trust who do amazing work for the likes of ABC News, NBC News, The New York Times, The Huffington Post, Yahoo, Forbes, Esquire, MTV, Disney, Google and more.

We kicked around ideas that all came back to a central question: Could we build a media company that actually helps people?

Those are an impressive list of media companies, but notice how none of those include anyone with disabilities, any disability rights organizations, or anyone from the community they are allegedly serving.

Now I know something about being relatively neurotypical and able-bodied and writing about disability. The process starts, and ends, with accountability. My mentors are Rebecca Cokley, Lawrence Carter-Long, Ari Ne'eman, Alice Wong, and so many hundreds more. I reach out to them, I talk to them. I elevate their voices in my pieces for mainstream media. I mess up. They call me on it. I try to do better. I hold myself accountable to the community I serve as a journalist.

I've never had the sense that such accountability was part of The Mighty's plan. In fact, such accountability would get in the way of publishing inspirational/tragic pieces that drive traffic. The Mighty is happy to publish good pieces about identity and lived experience, but those aren't the money makers.

I see two ethical futures for The Mighty.

One: Support the community. If the editors really want to serve the disability community, they have to center disabled voices, use their platform to signal boost in both directions, and be accountable for what they do. If you read their social media feeds, 100% of their promotions are internal - no sharing of other people's work, no using their platform to say - hey, go check out this great blog post from Non-Famous Writer, etc. It's all internal promotion.

You asked who the good writers are, you got comments on Twitter. Now go talk to those writers and get to work learning from them.

Two: Be professional. Hire disabled editors. Pay your writers a fair wage. Take editorial responsibility for every word on your site, just like a real publication. Do whatever you want, but be transparent about your professionalism and stop exploiting disabled and non-disabled bloggers alike.

Because what you're doing now is causing damage to the community you allegedly are here to support, and you can't paper those wounds over with apologies.

Universal Design for Writing About Humans

The National Center for Disability Journalism at Arizona State University has released a new style guide for writing about disability. Here's the press release. There's also a "words not to use" document.

As a disability-rights journalist, I like the NCDJ a lot. They do great work and this is an important guide. These tools are absolutely necessary. People want to know "the correct term."

Of course, correct terms aren't always possible. There continues to be a vibrant debate within the disability community on person-first vs identity-first language, for example. While I don't think it's possible, or desireable, to get past these lists - it's great for journalists and editors doing quick checks on appropriates style - the release has made me wish for a universal design for writing about other humans.

My principles:

Ask.
Listen.
Respect.
Don't assume I know the answers.
Check preferred pronouns.
Hold myself accountable.
Take criticism graciously.
Always try to do better.

If I were a clever chap, that would be an acrostic. Instead, it's just a set of aspirational goals for how to write about other humans.

What did I miss?

Disability Journalism: Rose Eveleth on not writing ableist garbage

Rose Eveleth has become one of my favorite writers on technology. Lately, she's been  focusing specifically on prosthetics. It's an area that technology is rapidly transforming. It's great to have deeply thoughtful journalists reporting on both the science and the social implications.

In this blog post, she reflects on what she's learned on her beat and how not to write "Ableist garbage."

1. No Inspiration Porn. (Here's my intro to that topic and disability journalism). Eveleth writes, in regards to prosthetics: "It can sometimes feel like these stories are not inspiration porn, they don’t fit the mold, but they are all about making able bodied people feel good about the world via the application of technology to a person they assume must be struggling and unhappy."

2. Remember what prosthetics are for. It's not just about cool tech saving the world, but helping people who need them.

3. Talk to amputees. "Often, as science journalists, we get really hung up on a particular kind of expert: the scientist, the doctor, the engineer. These people have expertise, sure, but they only have a certain kind of expertise. The patient has another kind, and a kind that is just as important."

Read the whole post!