Inspiration Porn is Not Progress, It’s a New Kind of Oppression

We’ve all seen the images. Those pictures of disabled people succeeding. They tend to fall into two general categories.

Disabled people particularly children doing everyday activities. This is often accompanied by quotes like “the only disability in life is a bad attitude”

The other uses images of disabled people doing something noteworthy like reaching a high level of athletic ability or physical fitness, with taglines like “your excuse is invalid” or “What was your excuse again”

The point of these images is to ostensibly put a positive spin on disability. Josephine Fairley argues that inspiration porn must be progress because it takes a topic which has most often been viewed negatively and puts a positive spin on it. The positivity then outweighs the patronizing tone that so often comes along with these images.

The problem is that positivity does not actually equal progress. Particularly for a group that has so often been viewed through a lens of charity. First though, let’s look at the actual messages that are most often put forward.

1. The only disability in life is a bad attitude

Here I will defer to the amazing Stella Young

Stella Young quote

“The reason that’s bullshit is… No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books to braille”

While it is true that the disabled experience has often been perceived as an existance of unending suffering and that it is important to challenge that stereotype. Framing the disabled experience as being defined only by the attitude of the disabled person lets the nondisabled majority off the hook. How disability is experienced is not just a physical experience but a socially constructed one. This line of thinking allows the oppressor to be comfortable about not challenging the fact the the world is fundamentally not built for disabled people, even where adaptations exist, they are often not available. Braille has existed for over a century and yet materials in Braille are not widely or readily available. Often they must be requested.

We essentially went from a worldview where it was acceptable to segregate and neglect disabled people, which then supported our current inaccessible society to one where segregation is less acceptable but the world remains inaccessible. Making disability about attitude allows people to ignore the existing and new physical and social structures that continue to exclude disabled people. It simply maintains the old exclusionary society but blames it on the oppressed group for not figuring out how to be included.

2. “Your excuse in invalid” or What’s your excuse again?”

These slogans are often with images of disabled people achieving noteworthy things like becoming paralympians or gaining an above average level of fitness. It is certainly true that there need to be success stories for disabled people in the media. They have the dual benefit of showing other disabled people what is possible and breaking down stereotypes. These stories however need to have context. Acheiving athleticism as a disabled person is not as simple as wanting it and then going for it. There are often major barriers so in answer to the second question, there are no excuses but some very good reasons.

Opportunities for disabled people to participate in sports or other athletics (dancing, skating, etc) are not plentiful. We can’t just show up at our local gym and expect to have comprehensive training tailored to our individual needs for two reasons. First, tailor made training is expensive, coincidentally being disabled is often exensive. Add to that, that disabled people are disproportionately likely to live in poverty. Second, assuming the first isn’t an issue, you need a trainer who will work with your specific needs and limitations. These people are hard to find. A disabled person is more likely to be refused access to a training facility outright even if they only want to use it recreationally. Classes designed specifically for disabled people are often in groups so getting individual attention is hard. Also these courses are often thinly veiled physio therapy sessions that are more concerned with getting us moving than getting us to succeed at whatever the class is. If we manage to get in the classes for nondisabled people we are often left to flounder with no individual support or even become victims of abuse if we fail to participate at the same level.

So success stories are important but so to is the context. How did they pay for training? Where did they find a coach? What barriers did they face and how were they dealt with?

Yes I know, inspiration porn is more for the nondisabled consumer than the disabled one so many of the barriers don’t exist for the intended audience but the lack of context raises expectations for disabled people who don’t live up to that standard. It creates a value based binary of those who succeed and those who don’t without looking at why some people can’t succeed. The message for those who don’t is “You didn’t try hard enough” not “let’s make it easier for you to succeed”.

Coming back to Fairley’s argument that anything positive is progress. This argument is pretty weak because good intentions don’t equal good outcomes. The battle for human rights cannot be boiled down to “It’s the thought that counts”. In the fight for equality it is not the thought that count, it’s the results that count. Positive feelings that reinforce old oppressions are nothing but a new face for an old wrong.

Disability rights activists are not the only marginalized group to take aim at this lie. We currently live in a society where rights are discussed more freely and allies from outside the marginalized group are lining up to help. Unfortunately sometimes their good intentions do more harm then good. This has led to a lot of discussion of how to be a good ally and addressing the common problems that voices of privilege brings to discussions of oppression.

So this is not a new problem or one that is unique to disability rights activism but it is one that is slightly more complicated in the realm of disability. We don’t just have allies, we are also stuck with advocates. People who don’t even pretend to stand with us but instead position themselves to speak for us. This is because of the long history of disability charities. It has long been and continues to be considered acceptable for charities to dictate how disability should be perceived and dealt with. Often without the input of disabled people either in the design or implementation of these organizations (Autism Speaks, Neil Squire Society to name a couple). We are still very deeply contained in a social mentality that we need to be saved by the well meaning who then get tax rebates for donations. Charities always frame what they do as positive and helpful even when the people who are the intended recipients disagree. Consider the newly cancelled MDA telethon that provoked protests for years but only began to lose sway after Jerry Lewis stopped hosting the event. Former MDA poster child Emily Wolinsky even helped found a competing organization that addressed issues ignored by MDA.

The false positivity of inspiration porn is just another tool to keep disabled people in a place that is controlled and defined by nondisabled people. It does nothing but reinforce old stereotypes of laziness and robs disabled people of accurate representation in the media by coopting our stories for the consumption of others.

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Can We Please Stop Calling Able-Bodied People TABs

Physical access for people with disabilities is crucially important for an inclusive society. We currently fall far short of being fully accessible. This is true pretty much everywhere, though some places are worse than others.

It can be difficult to get people who do not face barriers to public access to take those barriers seriously or to even acknowledge how widespread those barriers are. As a way to bring context to this issue where one side lives an experience of regular and often unpredictable public exclusion and the other which is allowed to remain blissfully ignorant, the disabled community came up with the abbreviation TAB.

Temporarily Able-Bodied. In an effort to build understanding around the issues of disabled people, we chose to remind people that we are a group they can join at any time and most crucially are very likely to join. It is described as

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

Frankly, there are better ways to explain why accessibility and understanding of disability issues are important.

Accessibility helps anyone who has to push a stroller or carry boxes. Full accessibility and its maintenance make life easier for everyone who has to move around. Disabled people are simply given more equal access. Access that is often otherwise denied.

Laurie Toby Edison and Debbie Notkin, who use the term TAB argue that

Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.

I find this view a bit naive. Disability is still deeply stigmatized. People actively fear becoming like us. I have a friend who often states that they would prefer to die young than ever become dependent in their old age. Even the authors of the last quote understand that the term can be problematic simply because it is not true. Not all currently able-bodied people will become disabled ether temporarily or permanently. They say,

At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.

Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.

Despite their misgivings, they ultimately still believe that the term has value as a community builder and they intend to continue using it albeit with disclaimers.

I genuinely see the term TAB as more of a threat (at least in how it is perceived, regardless of the intent of the user) than anything useful. It is saying, you will be like us someday and how will you get around the world then?

I most frequently hear TAB used as an inevitable description. As already pointed out this is simply not true. As Notkin and Edison point out, people have difficulty coming to terms with mortality. Disability though not always deadly is an extension of that fear. People do not view acquired disability calmly or dispassionately. They quite often fear it.

Ezekiel J. Emmanuel sums up why he would prefer to die early, rather than live as long as possible,

But here is a simple truth that many of us seem to resist: living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

So disability is feeble, ineffectual and pathetic. Emmanuel is far from alone in his beliefs. If he weren’t this discussion would not be necessary.

For a term like TAB to be effective at including others in understanding, they must first understand that disability is not a fate worse than death.

Unfortunately, understanding disability and the barriers disabled people face will take more than a term that is at best misleading and at worse could fan flames of fear because telling someone who fears disability that they are likely to become disabled is more likely to cause backlash than open channels of communication.

When is Language Ableist or Offensive

Comedian and disability rights activist Maysoon Zayid was recently featured in a Think Big video where she advocates for disabled people being given opportunities to be cast in film and television roles where the character is disabled. Currently the most common casting decision is to give those roles to nondisabled actors. The video is well worth a watch.

Since the video is on YouTube it has garnered a lot of comments and as with most comment sections on the internet many of the messages are offensive. Oddly this post is not about ignorant commenters but rather a conversation Zayid had on Twitter regarding one specific comment.

She begins with this tweet

ableism language 1

She is paraphrasing for the brevity required of twitter. In this tweet shat has used #retard to draw attention to the original commenter’s offensive language.

The first response agrees that the comment is both ignorant and offensive and concludes by calling the commenter a #moron.

ableism language 2

For context, here is a little history of the linguistic evolution around intellectual disability.

Words like idiot, moron and imbecile used to be medical terms but by the late 19th century had been widely adopted by society as general insults. In a move intended to find terms the medical community could use to describe intellectual disability without resorting to insults, a new medical term was adopted. It was retarded. Until then the word retard had been used to mean slow down or impede. Since its adoption in relation to disability however, it has become a slur that easily rivals the offense caused by its predecessors in offensiveness.

Likely because she was aware of this history one respondent questioned the use of language.

ableism language 3

While it was established that the use of #retard was in fact a direct reference to quoted language from a YouTube comment, the use of #moron was not.

This led to a conversation about whether moron is still ableist and when language is ableist, It seems to have concluded with these three tweets

ableism language 4

ableism language 5

ableism language 6

After this Mills no longer participates in the conversation and it moves on. Whether her absence is because she feels the matter is settled or is no longer comfortable questioning it, is unclear.

I am not going to take a stand on whether terms like idiot and moron are still offensive in an ableist way. Quite frankly it isn’t my call. Those words have never been connected to me medically so I am not directly oppressed by their continued use. I do however know that there are people who are affected by those words in ways that extend beyond their synonymous connection with stupidity.

I would however like to comment on the idea that ableism is only present when in the direct context of disability or when directed at disabled people because that just doesn’t make sense.

Words mean specific things. I can’t make the word ugly mean beautiful just by how I use it in a sentence.

The word retard does not stop being offensive or ableist when it is directed at someone or something that isn’t disabled. This was eloquently evidenced by John Franklin Stephens when he challenged Ann Coulter for calling President Obama a retard.

This is not just a disability issue. Just look at how the word gay which now most commonly refers to homosexuality but others have used it as a general pejorative. When someone calls an outfit or a situation gay, they are associating being gay with all things negative. The fact that no actual gay people are present is irrelevant.

Using words that reference a group of people and directing as a negative insult is harmful whether or not the people referenced are present to be directly hurt by it. This is because it culturally normalizes negative associations with that marginalized group and adds to systemic oppression.

I realize that it is impossible to have this kind of in depth discussion when limited to 140 characters, which is why I’m responding here.

I think particularly when considering ableist language when it discussed by disabled people, it is important to remember that disability may be the largest minority group but it is also one of the most diverse. Even if you ignore intersectional identities like sex, gender identity, race, sexuality, religion, etc. Disabled people are diverse in their diagnosis and sometimes this one identifier has social repercussions that are not shared with the whole disabled community. What may be offensive to one group could be unimportant to another. It is essential that while fighting for equality and an inclusive society that we don’t leave part of the group behind. The hierarchy of disability is real and it is often internalized.

When deciding if language is ableist please consider more than its effect on disability as a whole or if perhaps there is a group that you don’t fit into that may be differently affected.

Update

I have been asked by one of the people involved to remove their name and image. I have done so

Update 2

Amanda Mills has contacted me via twitter to confirm that she did leave the conversation because she no longer felt welcome there and felt as though she was being treated as overreacting.

I make this update with her permission.

The Issue of Harper Lee’s New Book and Armchair Activism

I have no definitive answers to the pervasive questions regarding whether Harper Lee truly wants her previously unpublished novel Go Set a Watchman published or if she in her old age has been coerced by the financial motivations of others. I do however wish to comment on some of the insinuations that seem to be popular.

The details as they can be confirmed are as follows. Fifty-Five years ago, Harper Lee published the American classic and Pulitzer Prize winning novel To Kill a Mockingbird. Since then she has published no other work and has throughout her life been notoriously reclusive. She is now well in to old age and in 2007 had a stroke which has affected her vision and memory. In February of 2015, Lee and her publisher announced that they would be publishing a second novel Go Set a Watchman. This novel was written prior to To Kill a Mockingbird and was rejected but, the publisher liked certain aspects of the story and asked Lee to rework it into what became To Kill a Mockingbird. So even though it was written first, it now serves as a sequel.

Since the announcement people have been asking questions as the timing of the announcement seems suspicious. Lee’s sister and chief advocate recently passed away, leading some to suggest that the publication would not take place had she still been living. Questions have been raised around Lee’s health and ability to understand what is happening. While the concern over whether or not Lee actively a knowledgeably consented to having her long shelved project published, is almost universally framed and likely does come from a place of genuine concern over whether Lee has been taken advantage of. The overwhelming consensus regardless to external reviews–which all point to her being aware and able–has also been that she has been taken advantage of.

There is no more that can really be done to confirm that Lee was in fact taken advantage of or was definitively competent when she gave the go ahead for the publication. This has gone beyond conjecture on the internet which in part led to an official complaint and subsequent inquiry, which sided with Lee’s capacity to consent. Yet people are still skeptical.

Government organizations are not infallible when it comes to its dealings with vulnerable groups but those failings are far more likely to restrict people than give them freedom. We will likely never know for sure because there is so much doubt being maintained. It is this obsessive doubt that I want to address.

Doubt is a great tool to uncover inequality and abuse but it can just as easily be the source of silencing vulnerable voices because the doubters don’t consider that they could be wrong.

Capacity to consent as it pertains to mental disability is complicated and is not based on an all or nothing standard. Harper Lee is not required to have full and permanent cognitive function at whatever frankly arbitrary limit, the armchair activists have set. She is in her late eighties which is compounded by her stroke, but age and medical diagnosis alone are not enough to write off someone’s agency.

I know most people who have written about this would argue that they are defending her agency but this is not true. A lot of the controversy has been couched in terms of questioning the motives of people around Lee but in order to do that, it must be tacitly assumed that Lee cannot make the decision to publish this book herself. So her agency is threatened not only by her family and lawyer but by everyone with an opinion on the internet whether it is voiced on Twitter, in the comment section or in an article. The assumption always seems to sway in favour of her incompetence despite these concerns being addressed not only by those who represent Harper (which have all been met with heavy skepticism) but also by external and independent review as detailed in this Jezebel article.  The state of Alabama which does not benefit from this new publication has deemed her capable of consenting and yet the ever skeptical Jezebel author ends her coverage of this finding with this line,

“Well, that’s that then. That’s that.”

She’s just as skeptical as she was before an external agency got involved. This suggests that people are more interested in this narrative of Harper Lee’s victimhood than Harper Lee’s actual narrative. In the end this just dehumanizes Lee and in no way changes what will happen. Go Set a Watchmen will be published in July. This victim narrative will not be satisfied until someone officially confirms it, which seems unlikely. There is no room in the mind of the public for any other outcome to be valid. Harper Lee is no longer a person with interests or desires. She is an empty shell that keeps breathing and making money for others. I want to offer an alternative possibility as equally fictitious as all the others but equally plausible.

Lee was in her mid-thirties when she published To Kill a Mockingbird. For a first publication it was an unprecedented success. She started writing and shelved at least two other books without publication. Starting out with a Pulitzer Prize winner is a hard act to follow after all and fear of not living up to expectations can be discouraging. She is now 88 and has the opportunity to publish a fully completed work that was originally intended for publication. Perhaps at this point in life she no longer cares about living up to the public’s expectations and it is a chance for the story she originally wanted to tell to be told.

Is this a cash grab on the part of the publishers? Almost certainly. Is it going to live up to the standards and influence of To Kill a Mockingbird? Probably not. Does that necessarily mean that its publication comes after nefarious actions at the hands of the lawyers and publishers? No. It doesn’t mean yes either but there is more evidence for a no and that needs to be considered.

Disabled People and the elderly are not vulnerable by default and people need to stop running on the assumption that they are. That kind of thinking only creates vulnerability by denying legitimacy to the thoughts and actions of people on the margins. In order to foster a world where coercion and abuse are obsolete, the narrative needs to be controlled by those whose voices are to often questioned and accusations of wrong doing come with evidence that amounts to more than “that person, I consider to be vulnerable did a thing that I didn’t expect with the involvement of other people” Well founded doubt can be the vehicle for finding truth. But in this case truth has been defined as a single outcome that is not forthcoming. It is just as likely that doubt in this instance is based on well intentioned ignorance. An ignorance born of the normalization of the dehumanization of disability.

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.

Hey People: Diagnoses are Nouns not Adjectives

As I have written about before, language usage is important when considering how disabled people are viewed and portrayed in society. While I personally prefer to not use person first language, there is one situation where the person should always come first. This is when an actual diagnosis is being discussed. I will demonstrate:

Person with Cerebral Palsy

Person with Down Syndrome

Person with Spina Bifida

and so on.

This should be self evident because both the word person and the diagnosis are nouns, and yet this simple grammatical concept is to complicated for a lot of people. Today, I read this. The headline reads

Kiwi expat family take cerebal palsy son’s discrimination case to UN

What the fuck? Cerebral Palsy is a noun, it is the name of a medical diagnosis. It is not now nor has it ever been an adjective. It can’t even be made into one as Autism can be made into autistic (most autistic people are totally fine with being called autistic but people with other diagnoses that can be made into descriptors like Schizophrenia really hate it and you should all respect that).

This is far from the first time, I have seen this severe lapse in grammar. It often happens to people with Down Syndrom2 for example here and here. Bless Google for knowing this is terrible. while I was searching for the examples, I knew were plentiful, my top results were for articles with correct person first phrases “man with Down Syndrome” or “child with down syndrome”. Even so, it didn’t take much scrolling before I found examples of the offending phrases. To add insult to injury, the second example is a story about a young man with Down’s who was killed by police. Even in death he can’t have his humanity recognized

By trying to turn a noun into an adjective, you are going to both fail and give that noun precedence of place. By putting it before the person you are giving it ownership of that person and denying their humanity and individuality. So in future check your grammar and remember that diagnoses are not descriptions of people but are things that people have.

Proof that “Positive” Euphemisms for Disability Just Don’t Work

In the last couple of decades the language surrounding disability has become very fluid, less specific and just generally vague because “disability” is seen as a dirty word whose associations have negative affects on the people to whom it’s applied. In a move that fools exactly no one supposedly positive euphemisms have been introduced to replace referring to people as disabled. Words like “differently-abled” and “special needs”. These terms are suppose to reduce the stigma associated with disability by framing disabled people with positive language.

Does it work?

Nope!

Comparisons to and associations with disability are still considered offensive to nondisabled people.

Take for example the fact that Anglophone Quebec residents (a minority in the province) warranted an apology when a provincial website referred to English language users as Quebecers with special-needs.  An error that has blamed on poor translation.

In a bilingual country, translation errors occur all the time and are usually corrected without incident. However when that error accidentally associates a large group of people with disability it makes national news.

Considering the real tensions between francophone and anglophone Quebecers this will be seen as a slight to the Anglo minority. If a possible and likely translation error that inaccurately associates a majority nondisabled group with disability causes enough controversy to be covered by the news, the term is not functioning as intended.

Associations with disability even when accidental are still causing offense even with so called “positive” language.

Time to do away with the misleading and lazy language and deal with the real stigma and prejudice.