Every week, at least one disabled person is killed, often by a family member or unrelated caregiver. Troubled by the framing of news reports on such murders, David Perry, a history professor and disability rights journalist, recently examined how the media covers these murders in research for the Ruderman Family Foundation.

With input from contributors Vilissa Thompson, Zoe Gross, Timotheus Gordon, Kathleen Seidel, and Kristina Kopić, Perry conducted a study spanning reporting on the murders of disabled people by their family members or caregivers from 2011 to 2015.

Thompson is a social worker, disability rights writer, advocate, and CEO of Ramp Your Voice!; Gross is the director of operations at the Autistic Self Advocacy Network (ASAN), which works with autistic people who directly engage in disability activism and education, speaking for themselves and their communities; Gordon is an autistic self-advocate and disability studies scholar at the University of Illinois; Seidel is a writer and researcher who has explored issues surrounding autism, particularly those related to pseudoscience; and Kopić is a researcher with the Ruderman Family Foundation.

Together, the team drew grim conclusions, including a note that journalists routinely fail to interview disabled people for these stories; that the humanity of victims is erased from the discourse about such cases; and that news outlets often imply that murders of disabled people by caregivers are “justified” or “mercy killings.”

Rewire spoke with Perry, Thompson, Gross, and Gordon about the research and the team’s recommendations for journalists, which include victim-centered reporting, consulting disabled people, contextualizing the setting of murder cases, and being wary of claims made by defense attorneys.

Rewire: Why is it so important to examine how the media reports on the murders of disabled people by family members or caregivers?

Zoe Gross: I often find myself coming up against this attitude that has become ingrained before people even realize it: that those kinds of murders are more justified than others. That is something that is out there in our society, as a common-sense belief. And this is reflected in media coverage without any challenge, or without the journalist pausing to consider whether or not they think that’s true, or whether or not they’d like to reflect that belief in their writing. That belief being so prevalent contributes to the normalizing of violence against people with disabilities, and it contributes to disparity in sentencing. People who kill or abuse disabled victims will not get a sentence as harsh as someone who kills or abuses a nondisabled victim. And that is just part of our society really throwing its weight behind the idea that disabled lives don’t have value. That I find really disturbing.

David Perry: In doing the study, I wanted to take that analysis—which I would say is prevalent in the self-advocate community—and put some data behind it. We really should just believe Zoe and the many other self-advocates when they say these things, but I also know that when you’re fighting against big societal forces like ableism, sometimes having a lot of data is really useful. I thought we could just look at five years of coverage and read a couple hundred articles and analyze them, and have a way to really quantify the coverage. We found it when we saw that in 2015, not a single journalist who reported on one of these stories reached out to a disabled person, let alone the professional experts within the disability rights community. Journalists don’t talk to disabled people.

Vilissa Thompson: When I see stories of us being killed by parents or caregivers, it makes me realize how the system, including social support services, continues to fail us. And how it fails to talk to disabled people who are social workers, like myself, or are lawyers, or writers, or journalists, to really get the truth about these stories out to the public so that some of the issues that we see in the coverage won’t be such a problem, and the attitudes about what is covered will be lessened.

ZG: I did want to note that when it comes to this kind of data, about things self-advocates have been saying for years, I see a lot of people saying things like: “Oh, how disrespectful of them to conduct a study, we’ve been saying it for years.” But we actually do need both, and both are good tools. When someone does a study that shows us something we already knew and have been saying, it’s not a way of disrespecting us. It’s giving us tools that we can use in our advocacy, and in saying: “Look at this, this is a problem.” I like to have as many tools to do that as possible, especially in the case of this study, which was carried out alongside and with the input of self-advocates.

Timotheus Gordon: I applaud the Ruderman Family Foundation for including people like myself, Vilissa, and ASAN, in particular Zoe. I want to thank them for allowing us to provide our voices and letting people know why “mercy killing” is wrong. And I hope more foundations will allow more voices from the disability community in the future.

Rewire: Did any of your findings surprise you?

DP: In the disability rights community, we tend to pass around the worst of the articles. And the worst of the articles are really bad. But I was quite interested in the places where it was clear journalists went into reporting on a murder and were trying to do it in a neutral kind of way, and they still didn’t follow the best practices of “Journalism 101.” Being thoughtful about where you get your reaction quotes: If you get a highly prejudicial quote from one side, try to balance it out on the other side. If you hear a defense attorney put forth a theory on why a crime happened or why a crime didn’t happen, remember that they’re a defense attorney and be really thoughtful about how you use that quote. Really kind of basic stuff. Not in the worst of the cases, not in the worst of the articles, not in the cases where the journalist affirmed a “mercy killing” narrative, which is where I see the really awful examples, but in really pretty OK, kind of neutral reporting, still not following best practices. And as a journalist, that was really useful for me to see, especially to see it 50, 60, 70 times, again and again as a real pattern.

TG: I was very shocked by how the media portrayed the mothers and the caregivers as heroes, in a sense. I was also very shocked that the media basically did not go to the disability community to get their take on “mercy killings.” It’s like not consulting Black Lives Matter or the NAACP whenever hate crimes occur involving someone from the African diaspora or someone of African descent. It would be fair if the media would reach out to ASAN or Access Living, or any disability centers and organizations, to get their take on “mercy killing” and why killing people with disabilities is wrong. We basically get killed off for being burdens. We’re not burdens at all.

Rewire: The study includes recommendations for the media, but what would you really like journalists to internalize before reporting on cases like these?

VT: The one thing I would want, for journalists and nonjournalists, is for people to really check their biases and prejudices about the disabled experience. That’s something I emphasize to my social work colleagues when I present different topics on disability, particularly when it comes to interacting with disabled people on touchy issues like sexuality or racism. We should take a closer look at how we on an individual level can change the way we view disability, and how on a bigger systems level we can change how we report these stories. Or how we look at social services, or support the services that people utilize, and the potential cuts to them. Really looking from a holistic standpoint of the disabled experience, and not from a medical model, or understanding disability from a pity model or charity model. Reevaluating those mindsets is where it would begin.

ZG: Journalists should begin by questioning the assumptions they’re bringing to their reporting on cases like these. Journalists in these cases should start with the idea that the person who was murdered was a person. Was a human being. And if readers don’t come away from your article with a very clear sense of that, you need to rewrite, because you are doing something that is wrong and that is dangerous. Centering the victim is a really important journalistic practice in these cases. It’s also one of the best practices for journalists covering violence with a potential for copycat crimes, like mass killings or in some cases suicides. Other best practices in cases of violent crimes are things like not giving a manifesto to the perpetrator, not publishing the perpetrator’s name where that’s possible, and not giving sensationalized details. A lot of these reports on people who kill a disabled child focus, I think, on: “Why would this person do this?” In doing so, it often starts from a place of “I can’t understand” and quickly becomes a rush to excuse. Reporters end up saying: “Oh I can totally understand why someone would do this, this is an understandable thing to do.” Don’t rush to contextualize this, such that you end up excusing it. That’s not good journalism, and it’s not going to be helpful to your readers or to society.

DP: That’s exactly what I mean when I talk about this as Journalism 101. We know in theory how to report on violence, but we’re not applying those guidelines to these kinds of cases.

Rewire: It’s impossible to have a conversation like this without addressing intersections of race, poverty, and disability. How should these issues be integrated into reporting on the murders of disabled people by family members or caregivers?

DP: One of the ones we’ve seen a lot is the rush to assume that parents lack access to services as part of the context. And sometimes, surely, they may have lacked access to services. But in other cases, that’s been reported and then proven not to be true. The Alex Spourdalakis case in the Chicago area is kind of the classic example of that, in which lots of services were offered to the parent and she rejected them, and that sort of gets dropped out of the story, in an attempt to blame lack of services for the murder. So often, when poverty is included—which, again, should be part of the story—there’s an assumption that poverty has a particular kind of meaning, that poverty means lack of access to resources, and so again the goal is to blame resources for the murder. In these cases of murder that in fact is not always accurate.

VT: If there are cases where a family wasn’t able to access services, then I think we need to do our best to talk about where systems are failing families of disabled children and adults to the point where they feel they have no support. They feel they are left with this inexcusable, despicable solution: to harm. We have to hold our social services and other systems accountable for what they offer people. Some services aren’t getting to certain communities, particularly in rural areas and among people of color, who are generally met with bias and discrimination. If we’re going to talk about the system failing families, what exactly did the system do and not do, and how can we rectify that?

ZG: I tend to encourage people to be more cautious when they are linking services and support with killings in any way. When people are doing that in articles, we see that a lot of people take away the message of: “I can’t condone but I can understand it, because they didn’t have enough support.” We should absolutely be talking about services constantly, there are families all over the country of people with disabilities of all kinds that don’t have enough access to services. But the vast majority of them don’t murder or abuse their children. And I think that is a standard we can hold anyone to, regardless of the amount of services that they can access.

TG: Disability intersects with race, with gender, with a lot of things. It’s imperative that we the disability community uncover the intersections between disability and all of the other factors that play into any disability issue, especially “mercy killings.” We see sympathy toward the caregivers more than the victims themselves. It’s disability erasure—there’s more mention of why disability is so feared.

ZG: I’ve been following and reading these cases for many years now, and it seems to me, from following it, that journalists are more eager to create sympathy for a perpetrator when that perpetrator is white. We see that in terms of other crimes as well. You’ve seen ways that white people who commit crimes are portrayed in news articles as: “Oh, this person was a misunderstood loner,” and then people of color who are victims of crimes are treated more harshly.

VT: We should be paying very close attention to how the media reports these stories on the basis of race and other factors. This is instrumental to making sure that every crime committed is treated the same way: as despicable, as inexcusable, as something that should not be condoned whatsoever.

Rewire: Do you feel some of the issues identified here speak to larger failings in media coverage of disability?

DP: I absolutely do. It is a life-and-death example of how failings involving coverage of disability in the media can happen. Dehumanization: talking to parents or neighbors or nondisabled professionals rather than assuming that disabled people can speak for themselves. Not understanding that ableism is a violent factor in our society. We can see that in every kind of story—from “child with Down syndrome is able to score touchdown” or “nice McDonald’s worker is able to help disabled person eat French fries,” that kind of inspiration porn-type reporting that we all know and hate, all the way up to these life-and-death kinds of cases—that they absolutely connect across the board.

That’s one of the reasons I’m really glad the Ruderman Family Foundation—which is focused on inclusion—is trying to fund these kinds of studies to say to the media: “Hey, I know that you, individual reporter, may only report on one of these cases in a career, or report on disability once or twice every twelve months, but you need to be aware of the national pattern and how your one or two stories participate in that national pattern.”

TG: I think it’s a ripple effect, not only just on filicide, but the larger picture of disability in general. For instance, every April for Autism Awareness Month, why do you always go to parents and Autism Speaks? Why not go to autistic people themselves to get a story about autism awareness and autism acceptance? Why not go to the actual autistic self-advocates? There’s a phrase, “nothing about us without us,” and unfortunately in the conversation about disability in general, we’re not included at all.

Rewire: While this study focuses on media, do you think it has lessons for everyone else?

TG: The main thing people should take away from the report is the importance of including people with disabilities in the conversation. That will make stories more balanced, and that will also help break down the myths and stereotypes and fears of the disability community. Include disabled people, deaf people, autistic people in the conversation, and just allow us to define what’s going on. If anything, this is an opportunity for the media and the general audience to listen to what the disability community and the D/deaf community and the autistic community have to say about what’s happening to us.

VT: What I always find disturbing about these stories is the sympathy displayed by people who view the perpetrators and say: “Oh, this person was such a good person, they were so nice, such a good neighbor.” It’s important for people to see how heinous these crimes are, and to, god forbid this happen in your community, not be so quick to paint the perpetrator as a good person, and to really see these crimes for what they are. I really want everyday people to see that our lives are worthy, our lives matter, and when we are killed by caregivers, parents, whoever, we deserve the same amount of outrage as any other crime committed against members of our community. We need to reshape how we look at these narratives and how we look at people who do such things and see them for what they are.

DP: I remember just this last year, when Carolyn Hager, an elderly woman in Florida, was killed by her husband, and her husband told the media and the police that he did it because they couldn’t afford her medicine. Both the professional media, and liberal activist social media, picked up that story and ran with it as a way to talk about the problems in the health-care system, rather than talking about the fact that a man had just murdered his wife. She didn’t ask to be murdered. There was no evidence that she had said: “Well, we can’t afford medicine, so I would like you to help me commit suicide.” He just decided to do it. To me, that was the story. Just like Zoe was saying in terms of services, I am ready to talk about the high price of medicine and access to health care almost any day, but in the case of the death of Carolyn Hager, we need to talk about the death of Carolyn Hager. The activist world is too ready to spring on violence done to a disabled person to talk about social issues that they care about, rather than to talk about the violence.

ZG: Someone’s death is not a jumping-off point for a larger conversation, no matter how direly needed that conversation generally is. You don’t need to exploit that person’s death to have that conversation, so please don’t. You really do end up with people saying things like, as David was saying: “Look how bad our health care is in this country, it’s driven this man to this act.” Although health care in this country is very bad, this person made a decision to commit murder, and we don’t want to be talking about that in ways that make it sound like it’s a natural result of our health-care system being bad.

VT: Doing this is blatantly disrespectful, and devaluing the disabled person who was killed. It goes back to how society looks at us, and doing this distracts the conversation from where it should be, which is the trend of killing disabled people. Disabled people are worthy of living and being protected.