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

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Thoughts on #CrippingTheMighty

I became aware of #CrippingTheMighty yesterday when a friend mentioned me in a tweet.

Now I have been aware of The Mighty for a long time. I have been uncomfortable with it for about the same length of time.

The Mighty is ostensibly a site about disability. Their tagline is,

Real people. Real stories.: We face disability, disease and mental illness together.

The problem with The Mighty is that the “real people” whose “real stories” are being told are predominantly not disabled. They are the stories of parents or care givers. They are stories about disability, far to often told from outside of it. As a result far to many of the stories fall into the trap of inspiration porn or even worse parental self-pity.

They are pretty unapologetic about this, consider this quote attributed to their editor.

Despite selling itself as a site which celebrates the stories of disabled people, it is also a space where we are centred very squarely as the “other”.

That is not to say that they never publish stories by actual disabled people. Most of which appear in stark contrast to the rest of the site as they deviate so sharply from the dominant messages the site puts forward.

Issues arise even in disability lead stories in a couple of ways. First writers are never paid so they are expected to either create content or share content for free.

Secondly, The Mighty has been known to insist on edits that change the tone of the piece or deny the way a writer self-identifies. To the point where some have pulled their permission.

It is not just disabled writers for the site who have issues. Others avoid it entirely or at least heavily critique it.

So back to #CrippingTheMighty which is a conversation about trying to shift the focus of the site. I have to admit to a certain amount of pessimism. I do not see the site editor making the seriously needed systemic changes to keep the site from doing more harm than good.

First you have the nondisabled editor who seems quite happy with the self-pity and inspiration porn that make up the majority of the site.

Secondly, you have to contend with the people who visit the site, the people who are drawn in by the camaraderie of self-pity and feel good inspo-porn.

Just go look at the comment sections on articles that challenge preconceived ideas and bigoted actions. The readers of the Mighty are more than happy to defend prejudice.

The Mighty is a safe space for those ideas. Those who regularly read The Mighty are unlikely to take well to being cut off from their self-pity play group and inspiration porn. While I have little sympathy for them, The Mighty is unlikely to take any action that is going to infuriate or alienate the vast majority of their readership. They don’t want to build a more enlightened reader base, they would rather cultivate the ignorant base they already have.

Let’s face it disabled activists’ positive contact with The Mighty is through those rare disability lead articles. Apart from that, the relationship is and has been adversarial for a long time. The Mighty does not want to listen.

So while, I appreciate being considered a positive voice for the disabled community, I think #CrippingTheMighty serves better as a tool to publicly criticize the site (and dissent is a powerful tool of education), rather than a viable way to change it.

As it currently stands, I would be deeply uncomfortable having my writing featured on the site, surrounded by so much content that makes me cringe.

I think a better option is to continue critiquing The Mighty (to hold it accountable), but rather than banking on changing it, creating an alternative. A Website truly lead by disabled voices which could more accurately show the reality and the diversity from within the disabled community.

In Defense of the Radical Idea of Letting Disabled People Exist in Public Without Comment

Today, I was reading a blog post by Dominick Evans called Don’t “Just Say Hi” to Me…Just Fuck Off Instead. He’s referencing the Cerebral Palsy Foundation’s ill advised campaign to combat people’s discomfort around disability by inviting them to engage with disabled people and “Just Say Hi“.

In my experience people don’t have trouble saying hi, my friends do it all the time, shockingly even the ones who aren’t disabled happen to manage it. The problem with campaigns like “just say hi” is that they lack context. You should really have a reason to talk to someone. The existence of disability in your general proximity is not a reason to talk to them. Not that this stops complete strangers from doing so.

Random people have been doing this to me in public since I was a child.

Let me make this very clear adults (most often men) have felt perfectly comfortable coming up to me and saying “hi” since I was a child. Almost exclusively when I was alone (walking home from school, perusing books in the library, etc), yes there is a serious creep factor going on.

These interactions have followed me into adulthood and the creep factor has diminished but not disappeared. These interactions are entirely fixated around the fact that I am disabled. They have nothing to do with me as a person. They invariably involve probing questions about my body and involve such enlightened questions as “what’s wrong with your arm” or “what happened to you?”

The answer to both is “nothing” by the way.

Believe me people have no problem interacting with disabled people for the very reason that they’re disabled. I also assure you that when they do this, I don’t feel included. I feel like someone is very publicly pointing me out while chanting “Different, Different”. Talking to someone just because they’re disabled is not progressive it’s actively hurting people and contributing to a sense of entitlement from nondisabled people.

As Evans notes in his piece

Having a disability takes away most people’s access to privacy. The world truly has little concern for what is going on in our lives as disabled people. Instead there is this innate curiosity about us, which makes it impossible for most people to not say something.

This is the real issue that the Cerebral Palsy Foundation and any other organization should be tackling. The fact that disabled people are not seen as being entitled to personal privacy. The fact that our bodies deviate from the norm seems to give people the idea that they have the right to ask us probing personal questions and they don’t take refusal very well.

Perhaps this is why Evans says that despite his dislike of these interactions, he tends to comply with a smile.

In my experience attempts to deflect just lead to more probing questions. An outright refusal to comply is met with shock and frustration. It also in my experience rarely if ever leads to them backing down because as I mentioned these people feel entitled to my personal information. They usually respond by attempting to shame me by saying something along the lines of “I’m just trying to learn, don’t you want people to be educated”

The fact that I have been trying to teach them that I have the right to exist in public without being accosted is inevitably lost on them.

So rather than telling people to “just say hi” a more appropriate lesson would be to make it clear that disabled people should have the right to exist in public without comment.

I am not suggesting that people ignore issues important to disabled people but rather learn to distinguish between discussing disability in general and needing to know someone’s personal information. It is time for people to learn how to discuss disability only when it is relevant.

The existence of a disabled person in public whether it be someone just walking down the street, shopping in the mall or even being the contestant on a TV talent show does not constitute relevance.

Engaging with disabled people just because they are disabled is dehumanizing.

Unfortunately, that kind of shift in conversation requires a social shift in how society views disability, which is still very much as a spectacle.

Ultimately, initiatives like “just say hi” are lazy faux attempts at inclusion that actually reinforce the status quo, while allowing nondisabled people to feel like they’re helping.

So please, if you don’t know what to say to a disabled person, it’s more likely than not that you have no business talking to them in the first place.

If they actually happen to be a peer (classmate, coworker, etc) and you haven’t figured out that you can talk to them just like anyone else then there’s probably no hope for you anyway.

Learning to talk about disability only when it’s relevant and in a way that doesn’t reduce the experience of disability into something that can be explained by a single person, will do a lot more good than expecting me to be happy that you’re talking to me just because you noticed that I’m different than you.

 

Just Because I Use Identity First Language Doesn’t Mean I Let Disability Define Me

I’ve talked about disability and self labeling before, I am no going to rehash my reasons again but there is an aspect of the debate around person first and identity first language that I’d like to take a look at.

Language and how it’s used is complicated and as a result, how language is used often deviates from the original intention. However for context here is a brief description of the original intent of both person first and identity first labeling.

Person First: as in person with a disability (as opposed to disabled person), person with with autism (as opposed to autistic person) was conceived to combat stigma around the term disability. It was meant to show the humanity of the person with a disability diagnosis by highlighting the individual’s personhood first. Disability was just tangential.

Person first language sprung from a medical understanding of disability, where disability was seen as the problem so it had to be de-emphasized.

Identity first: as in disabled person (as opposed to person with a disability) was originally conceived to challenge the medical view of disability and replace it with a socio-cultural view. It wasn’t people’s diagnoses that were the problem, it was society. Society was the main cause of disablement. Saying you were a disabled person was originally not about identity at all it was an acknowledgement that society was the predominant cause of barriers for people with impairments (see my post here for a more in depth breakdown of the social model of disability). It was a way of calling attention to society’s physical and social barriers by tying oppression to the term disablement.

I sincerely doubt that most people who use identity first language are doing so to constantly be saying “hey you are oppressing me” or “hey I’m oppressed” (even though those two statements are likely true). They do it for the same reasons I do. It is a way to reject the idea that disability is a dirty word and to say that disability can be a part of a person’s identity without sacrificing their humanity. It’s a pushback against the stigma associated with disability (for more see this piece by Emily Ladau).

It is from this perspective that I will be dealing with an issue that I often see in the debate between person first language (PFL) and identity first language (IFL).

There are several defenders of PFL who reject the idea of disability as negative but maintain the use of PFL because they feel that using IFL means they are letting disability define them and they are more complex than one identifier.

I honestly find this reasoning a little ridiculous. All people are complex and embody multiple identities that may include race, sexual orientation, gender identity, religion, nationality and more and yes even disability. I would argue that most people who identify with any of these things don’t then reject everything else. I have yet to hear an argument where someone has to argue where their religion is placed in a sentence by themselves or others means that it is completely defining them.

When it comes to being defined by a single identifier, it is not usually the individual being labeled doing the defining. It is someone else. In terms of identities that are marginalized the person doing the defining is probably being bigoted. People are far to complicated to be reduced to a single label.

Ultimately, it shouldn’t matter where disability is put in a sentence before or after person. It should just be a description. I admit I often use disabled person and person with a disability interchangeably when speaking about people generally just to have variety in my writing.

I however, choose to use IFL to directly challenge the bigotry inherent in assuming that I must be separated from my body to be considered human. I most definitely don’t do it to pigeon hole my identity into one label. I am far to complicated for that, just like everyone else.

I continue to believe that people should have the right to self-label and I endeavor to respect people’s personal preferences because we have been labeled by others far to often and it is time for us to take over the conversation about our own lives. I will not however accept the idea that my choice in sentence structure means that I am limiting my identity.

The Media and the Imaginary Disabled Person

img-kylie-jenner_174241584205

I get it, as far as popular culture and the media are concerned disability doesn’t exist. Disability isn’t real, it’s just a metaphor. You know how I know this? The complete lack of actual disabled people in the media. Yet the media doesn’t ignore disability. They make movies about “disability”, they have “disabled” characters in TV shows. All without using actual disabled people. I mean there might be a couple behind the scenes consulting but we rarely if ever get to see them.

I disabled in quotation marks above because those stories are almost never (with some rare and debatable exceptions) accurate. Not only are they not accurate in representation (using actual disabled people), they are wrong in presentation (the stories don’t accurately portray the disabled experience. Disability is far to often reduced to a few recognizable physical identifiers (wheelchairs, white canes, etc.) and stereotypes (the charity case, the supercrip, the embittered cripple and the mad villain, etc.).

Neither the physical presentation or the stories told around them are in any way an accurate presentation of the diverse experience of disability. I mean there are over a billion people on the planet so they probably represent a few people but certainly not all or even close to most.

The biggest problem here is that people don’t understand that they’re being lied to. They don’t understand that disability is more diverse and more nuanced. These stereotypes are perceived to be true.

Just consider the recent pictures of reality TV star Kylie Jenner in Interview Magazine. Two of the images show Jenner in a wheelchair even though she is not disabled. One image (shown above) shows Jenner seated in a golden wheelchair in a corset and high heels. Her face is passive and her hands are on the wheels. One leg is lifted as though she is either about to get up or perhaps fall backward. The second below

img-kylie-jenner_174227203447

shows Jenner in the same outfit and wheelchair looking for all intents and purposes like a lifeless doll.

The thing that makes this situation so relevant is how Interview Magazine responded to the inevitable backlash saying

“At Interview, we are proud of our tradition of working with great artists and empowering them to realize their distinct and often bold visions. The Kylie Jenner cover by Steven Klein, which references the British artist Allen Jones, is a part of this tradition, placing Kylie in a variety of positions of power and control and exploring her image as an object of vast media scrutiny.”

The wheelchair was used as literal metaphor and a metaphor about limitation. If anything proves that as far as the media is concerned that disability is an imaginary construct to be used however they see fit it’s this.

The problem is that disability isn’t imaginary. This metaphor of limitation doesn’t work in the real world unless you’re talking about inaccessibility (at which point I promise you the chair isn’t the problem).

As people have been eloquently pointing out wheelchairs aren’t inherently limiting. As Ophelia Brown points out

My wheelchair is not a limitation — it is my wings. It lets me go to school, go out with friends and live life like a “normal person.”

She also addresses the problem that relying on and defending those media stereotypes causes

Do you know what that lack of representation means? It means that 9 year-old Ophelia is embarrassed about having to sit out from gym class. It means that 12 year-old Ophelia would rather die than go to school in a wheelchair. It means that 17 year-old Ophelia has been told too many damn times that her disability makes her ugly. I want you to know how much power that wheelchair gives you, and how, honestly, you don’t deserve that power.

An able-bodied media figure has more power to define the disabled experience than actual disabled people. It is a power they should absolutely not have because they are using it to harm (even if they can’t seem to understand that).

All aspects of the media need to realize that disability is real and that we deserve better than the lies they are telling. Lies they have told for so long and so often that they actually believe them.