Disability as Sensationalist Narrative

It’s been a long time since I’ve posted anything. I’ve just finished the first year of my PhD studies and was feeling burned out. Today however, David Perry wrote about a “news” story in which the reporter profiled the mother of a young autistic child.

It is just another drop in the ocean of horrible parent narratives about disability which frame disability as the scourge that ruined the poor parents lives. These narratives are always framed as universal even though the profile sample is restricted to very few and often only one example. The article (if it can really be called that) reads like bad film noire narration. author’s sole source of information is the child’s mother. This is why I find it surprising that the piece is found in the “news” section. There is no actual research involved. He didn’t seek to find out if the woman’s experience is common. He just assumes that it is. He doesn’t talk to doctors or service providers to see if more assistance is available. Most importantly he certainly doesn’t speak to any actually autistic people. The reader is supposed to take his third hand retelling of the reality of autism as universal truth. He describes autism as an “epidemic” and a “genetic devil”.

He also seems to reject the idea that different people with autism might actually display different behaviours. He scoffs at a generic and very medical definition of autism:

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.”

he follows that up with “That’s putting it more nicely than it deserves.”. He completely rejects any concept of spectrum or individuality in the experience of autism, preferring instead to assume the single experiences of one mother is more widely applicable than an actual medical definition.

The thing is, this isn’t reporting, there was no research involved. Rather it is just another example of a centuries old habit of third person sensationalist narratives about disability that depend more on literary tropes than reality in order to frame real world perspectives of disability.

While I have no doubt that the mother profiled is expressing her genuine feelings. The writer fails to give them any context be it from medical professionals or disabled people. Both groups would likely frame the realities of autism differently but I have no doubt that they would agree on one thing. This one woman’s reality (or interpretation of her reality) is not and should not be taken as indicative of the broader realities of autism.

Even a more tempered description of his encounter with the mother might have been less offensive. He never met the son (whose full name is disclosed in the article thus violating the child’s privacy) but talks about him as though that isn’t necessary to really “know” him.

When I said the piece reads like bad film noire narration, I wasn’t exaggerating. the author used florid language, metaphors and similes. He is absolutely framing autism as a monster.

[the child] 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. (emphasis mine)

He talks about autism as though it’s a Dr. Jekyll & Mr. Hyde scenario as though the child exists without it. As though it took him over and if only autism could be gotten rid of the “real child” would emerge. this is reinforced by the rhetoric of disease and epidemic that he uses.

There are two things wrong with this. First and most importantly that child without autism is a figment of his imagination. He doesn’t exist and never did. the author acknowledges that autism is genetic (so at least we’re not dealing with a vaccine reactionary. Which is something I guess) that means the child has always been autistic. There is no nonautistic child in there.

Which brings us to the second problem a lot of autistic people, myself included don’t actually want to be cured. My reasons for it are primarily selfish. I like myself. Autism impacts everything I do and how I interact with the world. If I didn’t have autism, I would be a fundamentally different person. This is a pretty common sentiment but others will also be slightly less self-absorbed than me and point out that autism is a natural part of human diversity (for more perspectives on this see here, here, and here).

The thing is the author doesn’t really care about nuance or wider realities because he’s to busy creating his own where not only is the child he’s talking about a monster but so are basically all autistic people.

He appears to make random innocuous observations about the woman he’s profiling and her home and they inevitably have a horrible autism anecdote to go along with them. Like when wonders why this nice lady has tattoos–because apparently there is an identifiable “type” of person who gets tattoos and it’s not mothers of four–she has them to cover up the scars from where her son has bitten her.

Even the lack of towels in the bathroom is suspect. The explanation for which was a level of parent oversharing that I won’t recount it (the website Ollibean has guidelines about writing about your disabled children that I with the author and mother had considered). The fact that the lack of towels was worth even mentioning much less questioning is odd. I can’t even remember how many times I’ve been a guest in a house where the bathroom was inconveniently lacking in towels. In houses where there is no autistic resident. I always chalk it up to the host’s forgetfulness or lack of consideration. It’s never been worth questioning.

All of this is shared with the pretense of education but not everything gets a detailed expectation. When discussing the breakdown of the woman’s marriage he says this:

She also has a long-term marriage that is coming to an end. Her husband, Rene Juarez, loves his wife and his children. But after 10 years of living with autism …

He. Just. Can’t. Stay.

I didn’t add the ellipses. He’s actually put them in there to invite the reader to draw their own conclusions. After very conveniently setting up autism as the monster under the bed.

No other contributing factors are considered.

The child is then summarily blamed not only the breakdown of his parents marriage but also his mother’s drinking and experiences of depression. The fact that his grandfather suggested he be exorcised is added in as well. To you know really drive home the fact that he’s a monster.

The mother’s statement that her son deserves understanding and compassion is treated more like the request of an altruistic saint than something that should be taken seriously.

Basically every sentence could be dissected so I’ll skip ahead to the end where in an odd non sequitur the author jumps from discussing the woman’s charity  to her single relationship status.

I tread lightly here. I’m just going to be straight with you, Sonia: You must know the chances of a new marriage are not great. Few men would step into this situation.

“Absolutely true. I know that. To be honest with you, I have accepted that my life revolves around my son and my girls. But I also have another mission to fulfill. I feel this in my heart. I will help other families that live with autistic children.”

It comes out of nowhere but seems tacked on the end to really drive home how much of a martyr she is.

The fact that this piece was published at all is troubling. The fat that a newspaper actually classified it as “news” is even more so.

It’s sensationalist trash with very little basis in reality even if we assume the mother is being honest about her opinions and experiences because of the spin the author gives it. It’s directly in line with the fictionalized biographies of historical disabled people were written to frame them as other and the people who exploited them as benevolent.

Consider Dr. Frederick Treve’s memoir about his relationship with Joseph Merrick (known as The Elephant Man) which frames the adult Merrick who Treves repeatedly misnames John as a child.

Or the promotional pamphlet for Krao Farini (known as the missing link) whose race and physical difference were used to rob her of her very humanity.

This really is just another additional to a long line of sensationalist writing about disability which serves to make those around the disabled person seem like saints while leaving the disabled person as either object of pity or horror.

It is most certainly not news. It doesn’t even have the veneer of objectivity and any concept of research was clearly not even considered.

That child deserved better. Disabled people as a whole deserved better.

 

 

 

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Looking Back at #CrippingTheMighty

It has been eleven days since The Mighty post that inspired #CrippingTheMighty. A lot of good has come out of the hashtag. I have been exposed to new activist voices. My post on my initial take on the situation was shared widely on twitter and Facebook. It was even referenced by one of my favourite activist writers s.e. smith (so I had a little fangirl moment).

Ultimately, I think the most positive thing that came out of #CrippingTheMighty was the connections made between activists and the creation of a space (however shortlived) to air our grievances. I continue to believe as I did when I initially wrote about #CrippingTheMighty, that The Mighty is not going to change. In fact my interactions with the hashtag have only reinforced this belief.

If you go through the hashtag, you will find that The Mighty never interacts with disabled activists in any real public way, beyond systematically following every person who participated in #CrippingTheMighty on twitter.

Though they did publicly apologize for the particular offending post (a bingo game mocking autism meltdowns), they fail to understand how that post was not the only problem but rather just the tipping point. They did pay lip service to the fact that there has been push-back about their content from the disability community. In a later post they asked us to be part of a “conversation“. This conversation they propose is simply writing to their general feedback e-mail. I have no faith that they will listen to any of the people who in good faith wrote to them with honest feedback about necessary changes. The conversation The Mighty is willing to have is private where they can control the outcome. There is no accountability about what feedback they receive and why they did or more likely did not choose to act on it.

When The Mighty proposed that conversation, a conversation was already going on in full force on Twitter. The Mighty chose not to engage with us in that public forum. I’ll acknowledge that Twitter isn’t the greatest place for in depth discussions of the systemic issues within the Mighty but it would have been a start. There are also other forums not limited to 140 characters which would allow for a more open and accountable discourse.

The Mighty is however only interested in paying lip service to accountability. This is because as I said in my previous post, The Mighty despite its stated aims (helping disabled people) is really a safe space for parents of disabled children and avid consumers of inspiration porn. Changing the site to be in line with actually helping disabled people would alienate its largest reader base.

Further as s.e. smith points out, The Mighty has deep pockets and that funding would absolutely dry up if they ended their click-bait model. They would no longer have Venture Capitalists throwing money at them and their ad revenue would be less.

The people who most often frequenting The Mighty do not want to learn about disability, they want to have their preconceived notions confirmed. Disabled people who have ventured into the comment sections on The Mighty have found themselves attacked. If they point out ableism they are told to be forgiving and to understand that people just don’t know any better, if they are not dismissed outright. These people don’t want to learn, they hold up their ignorance as a shield.

These people are also not internet trolls. They are not arguing for its own sake or to harass, they do it out of a genuine sense of righteousness. They either believe that we are wrong or expect to much change to fast.

This does not account for everyone who visits The Mighty. One disabled writer for The Mighty did experience positive feedback from some of the nondisabled writers. She however details a lot of push-back from many others. Another disabled writer for the site felt so attacked by the nondisabled writers that they had to leave The Mighty’s private Facebook group for writers.

I feels like the progress made from within The Mighty is often one at a time while thousands stream past unaffected by internal activism. Which is not to say that changing individuals minds is not powerful and necessary. People who choose to try and change from within must be ready to expect more failures than successes.

In the sea of inspiration and pity porn that is The Mighty, those stories that stand out as positive, accurate portrayals of disability, by disabled people, end up being read and reinterpreted by The Mighty’s predominantly nondisabled readership as being the inspiration, those authors often actively fight against being.

I have said before that in the eyes of the media, disability is imaginary. It is a state to be defined and understood by people who do not personally experience it. You see this phenomenon at every level of media from fictional film and television to supposed news media.

The framing around disability in the media is wrong and harmful and within that framework even those pieces which seek to challenge the status quo can be assimilated into the very worldview they challenge.

People who write progressive pieces for The Mighty run the risk of being “SuperCripped” being placed on pedestals as individual examples of success rather than voices that actually echo the opinions and needs of the many. This is reinforced by just how few positive representations of disability exist on The Mighty.

The Mighty defends this false balance by arguing that everyone should have a say. Though why parents get more of a say than actual disabled people is not clearly articulated.

People have said that they would be ok with The Mighty if it just owned up to its parent focused, pity and inspiration porn peddling ways, rather than continue to claim an advocacy role for disabled people but this to is dangerous. Even if they did change their stated aims, they would still command a lot of traffic. Peddling their harmful representations but being able to more clearly deflect criticism from disabled people because, they could more honestly say “This isn’t about you”.

During my time reading posts under #CrippingTheMighty, I saw at least two tweets where individuals either contemplated or attempted suicide as a result of feeling like burdens to their families. In these cases heavily trafficked blogs were not involved. To have a celebrated archive of hugely popular parental self-pity is dangerous. Which is why though I continue to believe that The Mighty can’t be saved, it must still be actively criticized.

That is not to say that parents don’t have a right to feel stressed or want to seek out support. I just want to dispel the lie that framing your child as a tragedy and oversharing their personal information in a very public forum is in any way helpful. Parents who genuinely just want support and a place to vent should look for a less public venue. Otherwise I will just assume that they are nothing more than attention seeking assholes.

The Mighty writer Carly Findlay, describes the climate of the private writers’ Facebook page as one where those who don’t want to hear our arguments just want the situation to blow over. The problem is that it will and probably already has. Tweeting on the hashtag was only strong for about three days. In some ways The Mighty was lucky that shit hit the fan so close to a major holiday. The tweeting tailed off considerably Christmas Eve and is now comprised primarily of people resharing previously shared pieces.

The Mighty chose to ride out the storm, they payed lip service to our concerns but did not really publicly engage with any of them. Saving themselves from any sort of public accountability while giving the impression that they might do something about the issues but making no promises.

The Mighty will continue on as before and little if anything will change there.

I do hope that people will continue to use #CrippingTheMighty as a tool of dissent and hopefully future protests can be more organized so at least the worst content can be removed quickly.

I also hope to keep engaging with the great new connections, I have made with other disabled activists.

#Cripping The Mighty Roundup (share anything I miss in the comments)

Two Ethical Futures for The Mighty by David M. Perry

Run Down of #CrippingTheMighty by Savannah Logsdon-Breakstone

Some Real Talk About The Mighty by s.e. smith

If you Like It You Shoulda Put a Paycheck On It by Autistic Academic

My E-mail to The Mighty by Ultimate Oddball

Website “The Mighty” Faces Intense Criticism From Disabled Adults by Nancy Jobes

The Mighty is Part of a Long Tradition of Inspiration Porn by Blind Yanqui

We Liked It, So We Put a Paycheck On It by Autonomous Press

Open Letter to The Mighty by Un-Boxed Brain

While Outlander is a Real Winner for Women it Totally Fails Disabled People

Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis

Colum MacKenzie complete with CGI bowed legs on able-bodied actor Gary Lewis

Outlander is returning to the Starz Network today. It is a popular series based on the novels of Diana Gabaldon. I admit I like the show. I read the books first so of course I cringe where the show deviates from the original.

The show is well made and truly entertaining. It has also been lauded for its complex portrayal of women and female sexuality. These assessments are pretty accurate though I take issue with the casting of the female lead. Jenny Trout describes her like this;

“[Caitriona] Balfe is slender, but her stomach isn’t flat and her breasts are natural. The lack of body hair is a bit disturbing, given the time period, but watching the actors together, the viewer sees two people being intimate with each other, instead of two sculpted dolls switching between acrobatic positions.”

So she not totally perfect but she is very slim, which is the standard for women on TV and in movies. In the books however, Claire is repeatedly and consistently described as curvacious. Something Balfe is decidedly not. It might have been nice for them to have diversified the bodies of their female cast but they only non thin women are either extras or characters over forty-five. So I guess it’s only a partial win for women.

The show does however completely throw disabled people under the bus. The story contains the character of Colum MacKenzie who is both disabled and the Laird. The character is in many ways a major step forward for disabled characters in television.

Colum is not a stereotype. His character is complex, his role in the story is not completely defined by his disability, though it is informed by it. He does not fall neatly into the almost universal boxes of being a saint, villain, victim or inspiration. He has both good and bad qualities and none of his character flaws or virtues are a result of his disability.

And yet despite all of that, I cringe every time he is on screen. It is extremely disappointing that the producers of this show opted to cast an able-bodied actor. Particularly because none of the usual excuses for passing over a disabled actor apply.

The character is never shown as able-bodied. There is no transition to excuse the use of cripface.

The actor Gary Lewis is not the major draw to the series and is in fact almost unrecognizable due to the hairstyles and clothing. So his star power is not required for the show to be a success.

His disability is entirely created through the use of CGI and can therefor the portrayal is not the result of acting skill.

In fact as you see in the image above, which I obtained from an episode review, the author added the word Yo in between the bowed legs to draw added attention to them. The author had this to say about the physical presentation of Colum’s disability.

“the Laird shows up at the door, surprising [Claire] with both his abrupt entrance and CGI legs. Seriously, what in the world? The special effects here are maybe a little extreme, but sure. Let’s roll with it.”

The author is presumably able-bodied as she hasn’t indicated why she would have any expertise to judge the reality of the portrayal. So by have an able-bodied actor in computer generated cripface, the show destroys its own ability to claim a realistic portrayal of disability by giving viewers the ammunition to question it.

If a disabled actor had been used, this argument would not exist. You can’t argue with the reality of a person’s actual body. rather than a picture superimposed in post production.

This is a prime example of why there needs to be actually disabled actors cast as disabled characters. Realisn cannot be achieved through imitation or computer generation. It also shows that regardless of how accurate those CGI legs were (and I’m not competent judge), they allow nondisabled people to dismiss the possibility that for someone, that this might be their real body and real lived experience.

Reinterpreting the Social Model of Disability to be More Inclusive and Less Confusing

There are two main models that people use to understand disability and its place in society.

The most common is the medical model of disability (AKA the individual model) which positions disability as a solely individual medical experience and puts emphasis on treatment or cure. The overall goal is to have the person with the disability become non-disabled or its closest approximation.

It can lead to situations where the individuals desires and comforts are ignored or even undermined by the strict demands of the medical and rehabilitation establishments. The attainment of normalcy can come at the expense of quality of life for the disabled person.

In his memoir Standing Tall. Spencer West talks about how he was encouraged to use bulky and uncomfortable prosthesis even though he could get around much more easily using a wheelchair or walking on his hands.

The push for prosthesis also required him to sleep in a painful back brace to get his spine aligned so he could use them properly.

Ultimately, he rejects the use of prosthesis because they don’t actually help him or enrich his life in any way.

Disabled people have been challenging the supremacy of the medical establishment by trying to shift the conversation away from being seen as patients but rather consumers of medical services. This would allow them to get the medical interventions they need without being forced into those they don’t. Unfortunately due to the popularity of the medical model, people are often forced to receive treatments and therapies they don’t want in order to receive services. Treatments are often tied to disability supports or workers compensation. Failure to comply could mean the loss of necessary funding.

Disabled people have therefor created a new way of looking at disability that is self-defined and a direct challenge to the prescriptive power of the medical model.

The Social Model as imagined by its original creators goes like this

Disability is the social oppression experienced by people with impairments and can be alleviated by a social shift which eradicates the social prejudices and physical barriers that keep people with impairments from full social and public inclusion.

Well that was confusing so lets break it down

Disability no longer refers to a medical diagnosis. It is actually a social oppression like racism, homophobia or sexism.

Instead those diagnoses are now referred to as impairments

The solution to all the problems of people with impairments is physical accessibility like ramps, sign language and braille. and for people to stop discriminating. Then everything will be perfect right?

Probably not.

There are two main criticisms of the social model

1.) It denies the individual lived experience. Some people do suffer from more than socially created expressions of bigotry. Not everyone’s problems will be fixed by ramps or braille. Some people live with actual barriers caused by their conditions like chronic pain or fatigue.

2.) It completely ignores intersectionality. The model is often criticized because it was invented by white, male wheelchair users and therefor is tailored to meet their needs while overlooking the needs of people of colour, women, the LGBTQ community and any other marginalized group.

Not everyone’s problems are fixed by a ramp and the language of the model is so academic it has no real meaning in social usage.

It does however have a point social and physical barriers are a major problem that create additional problems for disabled people.

I don’t find any value in the semantic gymnastics the model uses Disability vs. impairment. There are already words to describe the social oppression of disabled people; ableism (my preference) and disableism. Both are already in use and neither can be used to deny the lived experience of a disabled person.

There is a lot of value in the spirit of the social model in that, the inclusion of disabled people in society cannot be attained without dismantling the physical and social barriers that exist to exclude us.

It just needs to be removed from the bastion of academia in which it was created and currently resides so that it can evolve into something that people can understand and apply in their lives.