By: Jeremy Einbinder
A notable problem for the disability community is that we often do not get to be the center of our own stories, whether they are wonderful or tragic. One of the more disturbing trends for the disability community is the prevalence of abuse from their caregivers. As terrible as that is, it gets worse when news media find a way to be sympathetic to the perpetrators.
In a report by the Chicago Tribune covering a woman named Bonnie Liltz and her murder of her daughter Courtney, the article does not portray Courtney’s death as a senseless act of violence by someone whom the victim should be able to trust, the victim a vulnerable person whose protection should be of top concern. Instead, it portrayed the elder Liltz as a desperate mother with no options, where the murder of her daughter seemed like an unfortunate, but almost understandable choice.
The Tribune was sympathetic to the mother’s difficulty in raising her daughter, more than the daughter having been murdered.
The article states,
“Liltz’s arrest has inflamed controversy over the treatment of people with disabilities. It has also shed light on the desperate situations faced by parents who are afraid they can no longer care for their disabled children.” This clearly implies that murder of a person is a comprehensible choice one might make in desperation.
“Although she does not know Liltz, Suzanne Klug understands her desperation — but can’t defend her alleged actions. Klung must get her daughter in and out of wheelchairs, feed her through a tube and change her diapers, just as Liltz did for more than 20 years for her daughter. And like Liltz, Klung has health issues and fears what will happen when she can no longer handle such care-taking tasks.”
Where the focus clearly should have been on the slain daughter and how obviously horrible it was that she was murdered, the first thought Klung had was that she understood Liltz’s desperation. In fact, the article chose to focus on Klung’s own desperation.
Klung’s daughter has cerebral palsy and she is her sole caregiver. A lack of assistance in caregiving could easily stress someone out, but the difficulties the person with disabilities faces are treated as a secondary concern. After all, the reasoning goes, those of us with disabilities are a minority; we are defective. And “normal” people have to deal with us and endure us. A commentary in the Pacific Standard explains it thusly:
“Small, marginalized communities are used to grief. They’re also used to being blamed for the violence perpetrated against them. A disabled person is killed by a caregiver — usually a family member — at least every week.”
This is an astounding stat, and it is compounded by the fact that we are not often trusted to recount our own experiences. Our struggles are often presented through the eyes of our non-disabled peers and caregivers. The Standard continues, saying:
“While individual stories sometimes splash sensationally across page and screen, there’s a sense among activists that the broader context remains unknown or ignored. Worse, too, often those sensationalized stories perpetuate the idea that it’s better to be dead than disabled, rewarding the killers with sympathetic profiles and understanding.”
Our presence is almost never considered worthy of preserving, worthy of educating or worthy of fully understanding each of our points of view. To the press, we are not a population worthy of respect or comradery. We are a deviation from the able-bodied or able-minded norm, a group of people who exist to either inspire the “normal” people to overcome adversity in their lives or to make them grateful that their lives are not even worse. To the people who have sympathies with our killers or abusers, but marvel at any mildly interesting accomplishments we might have, we exist to make them wonder what right they have to complain about anything.
According to a recent article on the health and disability blog The Mighty, a key part of our media and popular culture’s problem lays with merely admiring our ability to be a part of society. “Inspiration Porn” is a term used to describe society’s tendency to reduce people with disabilities to objects of inspiration. We do not get to tell our own stories. We do not get to be included and accepted in these instances. Our needs are not prioritized. The world is built for non-disabled people’s comfort, not ours. The goal of so-called “inspiration porn” is not to eliminate systemic oppression against people with disabilities. The point, rather, is to do nothing substantial and see if we can achieve some modicum of success. This is not really for our own sense of pride, but rather for their entertainment.
You’ve all seen the memes, The Mighty says, “‘the only disability in life is a bad attitude.’ Or a picture of a small child running on prosthetic legs accompanied by the caption ‘what’s your excuse?” This is a justification that people make to do nothing about systemic oppression. After all, the thought goes, people with disabilities are alive and exist, so what needs to be done? To further the point, the meme of inspiration porn isn’t about our accomplishments, but about warming the hearts of the “normal” folks.
“These images make the people viewing them feel great, but often they take images of people with disabilities simply living their daily lives and make them extraordinary,” The Mighty says.
Apparently, with the frequency of crime, abuse, and murder against people with disabilities, “inspiration porn” serves as a handy, if unconscious distraction, as does the tendency to focus on the parent of a child with a disability, rather than the child themselves.
To focus the attention regarding the complexities of disabilities on the parents of the children who have them, even if such attention is ostensibly positive, only serves to remind us that, in the eyes of the mass media, our parents are more important, and worthy of more empathy than we are.
It is this mindset which makes the abuse of people with disabilities by their caregivers seem even remotely understandable.
It’s important to clarify that parents of people with disabilities, while they may face unique challenges that parents of typically developing children do not, also do not face personal oppression. They do not face discrimination. They are not dehumanized. Their kids are.
In stories within our broad media landscape, where disability is discussed as a topic, the focus should primarily be on the person who has the disability. Their strengths, their struggles, and their humanity inside an ableist world.