Stephen Hawking - Bad Obituaries

I wrote for NBC about the death of Stephen Hawking, arguing:

A life like Hawking’s might easily fall into one of two ableist (discrimination or stigma based on prejudice and misconceptions about disability) tropes: The “supercrip” and the body/mind split. In the former, his accomplishments might suggest he “overcame” his disability. In the latter, his disability vanishes from the story as we emphasize the beauty of his mind.

Not only would either be untrue to Hawking’s own words about disability, it sends the wrong message to others. We need to see the scientist as a whole person with a complicated life story. He was a genius, he worked incredibly hard, he had access to great health care and social support, he had plenty of privilege and received help from countless people behind the scenes.

My editor, widely, advised me to cut a bunch on bad journalism as it becomes seriously naval-gazing for a general readership. But here's on my blog I can kvetch and overthink stuff all I want. So here are two cut paragraphs:

In 1988, a lush profile of the scientist in Time opened with, “Hawking is confined to a wheelchair, a virtual prisoner in his own body, but his intellect carries him to the far reaches of the universe.” Thirty years later, nothing has changed. . The New York Times, USA Today, Ars Technica, The Telegraph, and Science all described Hawking as “confined” to his chair. CNN used the much-loathed phrase, “wheelchair-bound.” For the Los Angeles Times, Hawking was “was chained to a wheelchair... but whose mind soared [beyond] the boundaries of the universe.” The Guardian called him a “Delphic oracle” whose “physical impairment seemed compensated by almost supernatural gifts, which allowed his mind to roam the universe freely.” Obituary writing is a tricky art, but these cliched structures reveal a desire to split the disabled body from the brilliant mind, rather than seek an integral whole person.

Then there were the cartoons. An image of him walking away from his chair into the cosmos went viral. Another cartoon showed him standing at the Pearly Gates, chair nowhere in sight. Hawking, of course, was an atheist. Obituary writing is a tricky art, but these cliched tropes reveal a desire to split the disabled body from the brilliant mind, rather than seek an integral whole person.

Obituaries for famous people are often written long in advance. I wonder how long ago these obituaries were drafted. I hope that when the next famous disabled people die, obituary writers do a little more editing.

There's a better way:

Journalists need to learn the word "use," when it comes to wheelchairs. It's a good word. Nice and neutral.

— David M. Perry (@Lollardfish) March 15, 2018

Here's two great pieces to read on Hawking:

• Keah Brown in Teen Vogue
• Ace Ratliff in Huffington Post

Here's some coverage of the bad coverage.

• Wemple at the Post
• Dastagir at USA Today

Forced Institutionalization and Irma

Miami-Dade County has vowed to forcibly institutionalize all homeless people who don't get off the streets.

The temptation will be to say this is for their own good and to look past it, but disasters do not mean that disabled people lose their rights. Moreover, notice how the article (and others like it) only talk to county officials, not people with relevant disabilities who are homeless or have experienced homelessness, nor experts in disability rights/mental disabilities with or without disabilities.

Just as officials are often too willing to overlook disability rights, journalists often overlook basis Journalism 101 principles when reporting on disability.

It's a complicated situation with complicated decisions and implications. Do the whole job. Don't report it simple.

Bad Disability Journalism: NBC Forgets to talk to Autistic People

The dad of an autistic man founded a carwash for his son to work at, and has employed lots of other autistic people. NBC did a feature in their "Inspiring America" series.

No autistic person is quoted in the story. Instead, we get this:

The repetition involved in the work is actually perfect for those on the autism spectrum who gravitate toward repetitive behavior. "Their attitude is strong," said D'Eri. "That goes to the consumer and nothing can beat that."
Now, four miles down the road, a second Rising Tide Car Wash is under construction. Despite not having a single ad, they've already received over 700 job applications.
D'Eri's efforts to help those with autism in his community started in his Parkland, Florida community but has since gone global. Through Ted Talks, seminars, and even a testimony to the United Nation, D'Eri is not only uplifting autistic people, but shifting the way people view them and their capabilities.
As for Andrew — he's a new man. "He's motivated," his father said. "And motivation is something Andrew never had but is key to life, right?"

It's the classic example of how not to cover these "inspiring" stories.

Bad Disability Journalism: Disabled Adults are not Children

Here's a major feature on caring for two intellectually and developmentally disabled children in Australia. The parents wanted people to "know what it's like, to advocate for more resources, more good housing options, and so forth.

The critiques of this piece could be many, but here's the one I want to focus on: The parents, and the reporter, and the headline continuously repeat the narrative that these 24-year-old women are "like three year olds."

They are not. Just look at the pictures - watching YouTube, shopping, reading the papers, and so forth. They may not be neurotypical, but they are not children. They may require intense levels of support, and I am a strong advocate for such supports. But they are not children. 

Bad Disability Journalism: Autism as "Genetic Devil"

Notes: Ableism and extremely stigmatizing language follow.

Note 2: Looking for autistic responses to this piece, if any. Mostly folks I follow on Twitter just seem tired and really, what else is there to say? Let me know if you see something I should link to here to signal boost.

UPDATE: @Erabrand on Twitter produced an angry thread. Quoted at the bottom of the post with permission.

---------------------------------------------

The San Diego Union Tribune has published one of the worst pieces on autism that I have seen in awhile, right up there with The Guardian's my autistic son is going to kill me piece. Both pieces report on the intense fears of parents of autistic kids. I believe that those parents genuinely said the terrible things that they are quoted saying, but argue that the ethics in journalism mandate two possible options.

1) Quote the parents, but also quote autistic people.
2) Don't write the piece at all

I lean towards one, because I think it's important to track and report on attitudes, even hateful and harmful ones. But as a journalist, one's job is not DO MORE HARM through one's reporting, but to provide context and nuance. I want journalists to take these extreme perspectives on disability with the same care that they might reporting on an ardent racist or sexist. You interview. You quote. You try to understand where they are coming from. But you do not write their narrative without framing it in a responsible way.

Instead, we get this:

Rene is not a criminal; rather, a crime has been committed against him by a genetic devil called autism. It's an affliction that seems to be growing in society like mushrooms under an autumn moon.
Causes and cures are still elusive, although experts have learned a lot about this complex group of brain disorders over the years.
Autism is a disease with a broad spectrum of symptoms that can start in the womb and last into adulthood. In one common definition, it is "characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors."
That's putting it more nicely than it deserves. You can bet Sonia didn't write that.

Genetic devil.

This should never have been published. It's a sign of a bigoted opinion columnist without editorial oversight, in large part, I suspect, because ableism isn't even recognized as a real thing by vast swathes of the public.

------------------

@Erabrand's reactions start here:

@Lollardfish I did a thread (complete w/immensely appropriate profanity) w/screenshots & commentary. Cathartic. https://t.co/2szkVIg9Ie

— Eb (@erabrand) August 30, 2016

#CultOfCompliance: Disabled/Deaf People Killed for Non-Compliance and Disability Erasure

Two disabled men were killed by law enforcement over the last few days. Details are still emerging. 

Both seem to be relatively young white men. Daniel Harris, in Charlotte NC, was Deaf and communicated via sign language. Joseph Weber, in Hays KA, has not been identified by diagnosis, but a local source tells me he was autistic.

A few weeks before that, a Deaf black man, Darnell Wicker, was killed in Kentucky.

All the news coverage of Harris and Weber seem to mention disability in the headlines and ledes. Almost none of the coverage of Wicker mentions disability, and certainly none of the headlines/ledes. 

So there are two issues: 

• One - police killing disabled people for not complying. 
• Two - media coverage of police killing disabled people for not complying. Disability is often erased, and especially so in cases of people of color (who are most likely to be the victims of police misuse of force). 

On the language issue, I spoke to Vilissa Thompson, creator of the #DisabilityTooWhite hashtag and an essential writer in the disability community. Strongly recommend making her RampYourVoice a regular read. Vilissa told me:

The erasure of Wicker's disability in media coverage doesn't surprise me because it occurs not only within journalism/reporting, but also within the Black Lives Matter movement when the police incidences involving Black disabled people fail to provide this important aspect when discussing the injustice committed.

The disability status of Black disabled people, from Korryn Gaines to Sandra Bland, are omitted for reasons tied to racism and ableism, and it must be addressed. To erase someone's disability status is both oppressive and offensive. To see it constantly portrayed regarding the lives and deaths of Black disabled people shows that we as a society do not value Black disabled lives, or the disparities they endure from having multiple marginalized identities.

There is work being done between Black disabled/deaf advocates to call out and demand that the experiences of Black disabled people who are victimized and murdered by the police receive the proper coverage that does not ignore their disabilities. This also calls for the experiences of Black disabled people to be fully included within activism conducted among Black liberation groups, disability advocacy groups, and other entities that seek to eradicate oppression and violence. We cannot continue to bury our heads in the sand about the experiences Black disabled people endure when it comes to the police - that purposeful exclusion is harming and damning to those of us who hold these identities.

When it comes to the police use-of-force issues, my overall position on the issue of policing remains: disability-specific training is not the answer to these tragedies, only the implementation of police tactics that do not respond to noncompliance, on its own, as a threat justifying the use of lethal force. While new details may emerge, in each case police approached the situations in ways that did not take into account the likely presence of disability. Presuming the possibility of disability has to be built into the standard approach.

Here are links - 

On Harris:

Detectives say Trooper Saunders and Harris got into "an encounter" before he fired his weapon. Neighbors say Harris' car spun out of control and was shot almost immediately after exiting the vehicle.

They say Harris was likely trying to communicate with the trooper using sign language before he was killed.

On Twitter, there was speculation that Harris may well have been trying to get to his home where someone could support him with communication, which seems reasonable to me. I'm waiting on a formal comment from experts within the Deaf community and will update here.

UPDATE: Talila "TL" Lewis, co-founder HEARD, wrote to me in an email:

The trooper wreaked havoc on Daniel Harris' car, as evidenced by the videos taken in front of Daniel Harris' home immediately following the encounter. Regardless of whether someone is Deaf, there is good reason to be fearful of police encounters, especially when they begin with this kind of violence. Relatedly, people with disabilities and Deaf people have a heightened awareness of just how easy miscommunication can occur with police officers who are enraged or in a rush.

In the past, Deaf and disabled people have been known to call family members, friends, interpreters to the scene of a traffic stop or other encounter to facilitate communication. This is Deaf and disabled people's way of compensating for police officers' lack of fluency in American Sign Language and lack of Deaf/Disability cultural competency. And so, it is not difficult to imagine that if Daniel Harris was in fear for his life, that he was trying to get to the one place where he knew there was effective communication access--his home--which really was just a few very short minutes away.

For more on Deafness and police use of force specifically, see this joint ACLU/HEARD project. The inability to hear shouted commands places Deaf people especially at risk. The Cult of Compliance, generally, is a cross-disability approach to thinking about policing (and our culture more generally), but it's worth pausing as well to consider each diagnostic profile and set of risks. Police must - under Title II of the ADA - be prepared for all of them.

On Weber:

According to a release late Thursday by the Ellis County Attorney’s Office, Weber was stopped for a traffic infraction and failed to obey the officer’s commands. As additional officers were called, he sped off from Plaza Avenue and made his way to Timber Drive.

There, the release said, he got out of his vehicle and again failed to obey commands of the officer. The officer fired a shot, hitting the 36-year-old. He died at the scene.

On Darnell Wicker, killed on August 8th. Wicker was carrying a knife and a saw. He did yard work in the area, so perhaps that's why he was armed, but there are also reports that he kicked in his girlfriend's door and they called the police. Either way, police must offer reasonable accommodations to disabled people they want to arrest. 

Malone and Proctor said the graphic body camera footage was difficult to watch. They said it was difficult to understand what happened because Wicker is not seen in the video until he collapses on the pavement after being shot multiple times.

“I don't know about anybody else but it didn't tell me nothing,” said Malone. “From my perspective he shouldn’t have been gunned down like that.”

“I looked at it a while ago and it just hurt me. My heart is full of tears right now for him,” said Proctor. “When they hollered 'put the knives down' I know he didn't hear them so I know that was a tragic mistake, killing Lawnmower Man and Bicycle Man like that." 

Family and friends have said Wicker was deaf in one ear and suffered from hearing loss in the other. Proctor said Wicker often relied on reading lips, adding that she was concerned that he might not have understood the officers' commands.

During a news conference Monday evening Chief Conrad responded to the concerns saying, "The officers were in very close proximity at the time and they were very loud and very clear in their commands to drop it.”

I have not done a thorough survey, but here are some headlines on Wicker that I've found:

• Family of police shooting victim speak out - The Courier-Journal
• Body cam shows cops ordering man to drop weapon
• Kentucky cops never gave black man a chance to drop his saw
• US Police Release Video of Black Man They Shot 16 Times
• Innocent Black Man Darnell Wicker Shot Dead By Cops
• Daughters say father shouldn't have been killed by police 

Disability, when present (and it's so often present), needs to be part of our standard narrative - not just for media, but also for the professionals tracking police data, for the activists working on reform, for the policy makers, and just generally in our conversations around policing and society.

Thanks again to Vilissa for her contribution and work on this subject.

Bad Disability Journalism: Writing about Obesity and Disability Without Talking to Anyone Obese

Suggestion to health reporters: If you are writing about a condition, make sure your reporting includes people who have that condition.

From Quartz: How obesity became the new face of disability in America

The article opens by comparing "lean" hikers to obese former steel workers in Colorado, then interviews doctors, economists, and public health officials, but no actual disabled people. It would be better reporting to actually talk to the people being written about. Ask them about their lives, their ideas, their concerns, their happiness, their efforts to change or not.

Bad Disability Journalism: Suffers from Mental Illness or Suffers from a Punch in the Face?

The use of "suffers" to describe people with various disabilities is my #1 "to-avoid" tip when I talk disability and journalism (#2 is "wheelchair bound"). It especially shows up in cases of police use of force. In last March's Ruderman Foundation White Paper, Lawrence Carter-Long and I wrote:

The most current disability style guide for journalists was produced in the fall of 2015 by the National Center of Disability Journalism (NCDJ) at Arizona State University. The guide is excellent in terms of offering reporters the best language to use when describing particular disabilities and should be consulted regularly. Its “terms to avoid” section may be even more relevant for this study, particularly the following passage:

Stricken with, suffers from, victim of: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life.

In too many contexts, the media describes victims of police violence as “suffering from” disabilities such as schizophrenia, when what they are suffering from is police violence, possibly manifested through bullets, tasers, pepper spray, or nightsticks. People suffer from abuse. People suffer from a society that has been designed only for the typical. If an individual describes themselves or another person as “suffering,” they can of course be quoted, but journalists must not assume suffering as fact merely because of the existence of a condition, impairment, or diagnosis. A journalist should handle quotes containing ableist language just as they would quotes containing racist or sexist language.

Here's an example from Cleveland, in a story about a disabled woman being punched by CPD.

Headline:

Cleveland woman punched by police officer while handcuffed suffers from mental illnesses, family says

Lede:

The Cleveland woman punched in the face Thursday by a police officer suffers from mental illnesses, including bipolar disorder and schizophrenia, family members said.

It sounds to me like she was suffering from being punched in the face. The suffer here is being used, rhetorically, to blame the act of police violence (and to defend her) on the disability.

Also paragraph 2: "Ciara Perez-Rodriguez, 21,suffered bruises and swelling on her face and arms in the altercation with police officers, according to her father, Louis Perez."
And towards the end: "The incident comes when Cleveland police are under an agreement with the U.S. Department of Justice meant to reform a department plagued with complaints about excessive use of force and how police officers handle residents suffering from mental illnesses."

I'm much more interested in these kinds of local news stories written by beat reporters than in the big flashy features (although I'm happy to critique those as well). We need to shift basic norms in how cases like this get report.

Korryn Gaines: Narratives of Race and Disability

Vilissa Thompson, one of the most important writers on race, gender, and disability, has written a powerful and moving piece on Korryn Gaines, the black disabled woman killed in Baltimore County recently. Thompson writes:

To be Black, disabled, and female means that you always have eyes on you. You must be “on” at all times; must be willing to “perform” for White, Black, & non-disabled Americas. You must be perfect and a good cripple, or be crucified at the cross, as we saw when Korryn’s story unfolded.

There were two matters in particular that struck me profoundly about the coverage surrounding Korryn’s fatal police incident: the way Black men discussed Korryn’s story on social media, and the Black community’s continued miseducation regarding disability.

Please read the whole thing. Also, while you are at it, read Talila Lewis - Achieving Liberation Through Disability Solidarity (on Rios/Kinsey, but relevant):

In the wake of Charles Kinsey taking a bullet marked for Arnaldo Rios this week, I am renewing the call for Disability Solidarity. Disability solidarity means disability communities actively working to create racial justice, and [non-disability] civil rights communities showing up for disability justice.

Disability solidarity is such a core concept, but one that gets too little attention both inside the broader civil rights movement and the broader disability rights movement.

Meanwhile, the media fails. Here's a post on Korryn Gaines and disability from the Washington Post, in which reporter Tom Jackman writes:

The police killing of Korryn Gaines in Baltimore County on Monday has the potential to be America’s next explosive racial powder keg. Or it could be defused by viewing it through the race-neutral prism of mental illness and the tragedy of lead-paint poisoning.

Race-neutral.

Jackman seems to think two false things: One, that mental illness and lead poisoning are race neutral. Two, that adding disability to a police killing makes it less explosive, rather than more. He may be right when it comes to the second point, because it allows an ableist mentality to explain away the violence, but that doesn't make it less offensive. As for the first - while disability itself extends to all communities, something like lead poisoning is part of environmental racism. Mental illness, meanwhile, sparks radically different responses from authorities and civilians alike, depending on whether the disabled individual is white, brown, or black.

Nothing in America is race-neutral. The fact that Gaines was disabled makes her killing more a sign of discrimination, not less.

Bad Disability Journalism: Worse Than Death

Some researchers asked folks who didn't have specific disabilities whether said disabilities would be worse than death and you know what, those folks said yes!

Then journalists write it up as a major clickbaity sciencey news story. It's got tons of coverage, but in not one case can I find someone who actually talked to people who have the specific disabilities, many of whom are a) doing just find and b) when they aren't doing fine, it's because of access to resources and experiencing stigma.

• Why is this a study that gets published in a major medical journal?
• If the study has value, it's a case of measuring stigma rather than measuring what it's like to have a disability.
• The researchers know this. They write:"Patients may underestimate their abilities to adapt to certain health states, such that once-feared states become more tolerable once they are experienced."
• Many of the journalists know this too:

From NYMAG:

For another (and this is probably more important), studies in psychology show that people are reliably terrible at what’s called affective forecasting — that is, predicting how they’ll feel in the future. In one rather eerily relevant study, psychologists Dan Gilbert (of Harvard University) and Tim Wilson (of the University of Virginia) observe that most (healthy) people say that if their quality of life is low, they would rather not have medical interventions designed to give them more time. “However,” as the American Psychological Association’s website notes, “when medical researchers interviewed people who were slowly dying and experiencing a very low quality of life, such people almost unanimously reported that they would go to great lengths to add even a few days to their lives.” Our future selves are frustratingly unknowable.

From Quartz

The patients surveyed had not experienced any of the limitations themselves, and the study authors write that it’s certainly possible the patients are overestimating the difficulty of living with these challenges. In addition, the number of patients surveyed was relatively small and limited to a single hospital in Pennsylvania. Nevertheless, this work suggests that health care providers should check with patients about their own priorities before treatment.

Sure, check with patients, but understand those patients need guidance due to stigma.

Telegraph too - 

However, researchers noted that, as none of the patients had experienced the conditions described in the survey, they may have misjudged how they would feel in such circumstances.

• As a science journalist, if one is going to write up this stigma-measuring study, you have to do it in a way that doesn't promote more stigma. One simple way would be to talk to actual disabled people. For example, if lots of people who aren't incontinent say that they'd rather be dead than incontinent, maybe talk to people who are incontinent about their lives, how they manage, and where they encounter problems (again, a social model approach). 

We need journalists trained to not write about disability without getting reaction quotes from people who are disabled. They've learned to do this with other topics, but disability lags far behind.