When Celebrating Accessible Technology is Just Reinforcing Ableism

So this video has been popping up on my Facebook news feed a lot lately.

It’s a video demonstrating a wheelchair invented by Swiss students and it’s a wheelchair that can climb stairs.

Now I know that stairs are a major physical barrier to wheelchair users and I have no issue with any technology that addresses those barriers. I however find the support of able-bodied people for technology like this troubling.

Viral excitement over adaptive technology seems to be directly connected to whether or not it challenges the social aspect of an inaccessible society. People are all for increased access so long as they don’t have to do anything about it.

It reminds me of another mobility device video that was being widely shared primarily by able-bodied people with the video caption “Making Wheelchairs Obsolete”

The 9 1/2 minute video details the uses of the Tek Robotic Mobilization Device which is basically an upright version of an electric wheelchair. It is specifically designed for people with paraplegic paralysis and isn’t really suited for wheelchair users with other conditions. The video however talks about how users of Tek can get around spaces that are inaccessible to wheelchairs like narrow store aisles. The device is also only really functional indoors with its low to the ground base incompatible with anything but a completely flat ground. Yet whenever I came across this video on Facebook it was always in terms of making wheelchairs and by extension the accommodations associated with them obsolete.

People love the stair climbing wheelchair and the standing scooter because they think it fixes the accessibility issue caused by a lack of ramps or elevators without actually having to install ramps and elevators. The perception is that the problem is solved without any change to society or the environment.

The happy “Look problem solved” mentality is however short sighted for many reasons. Primarily the reason that these devices are not suitable for all people with mobility impairments. Different wheelchair users have different mobility device needs that may not be met by either device. People with mobility impairments who don’t use wheelchairs may also need additional space to maneuver or ramps. The celebration of these kinds of technology show a very narrow understanding of what disability is. In the case of the Tek device, it is only useful indoors so an alternate mobility device is required outdoors.

Secondly for those these devices would help, able-bodied people ignore the cost of these devices and that in most cases that the cost would be shouldered by the disabled user. This essentially assumes that it is ok for certain people to have to pay a price of admission while others do not.

Third it assumes that it is ok to always put the burden of change on disabled people rather than deal with the reasons that accessibility isn’t already the norm. It positions the disabled body as social space where others can enact changes to mobility instead of making the actual social environment more mobility friendly. This ignores both the autonomy of disabled people and the fact that many of us don’t want to be “fixed” either by cure or imposed treatment.

Finally by so clearly associating an accessible environment to disability (therefor rendering it “other” and undesirable) people ignore the universal benefits of an accessible environment. Ramps are useful to people pushing strollers or carrying heavy objects. (for more on the last two points read Emily Ladau’s piece on why it is better to change the environment than people).

Yet this mentality that it is both easier and cheaper to as one person responding to my criticism on Facebook put it “Because it’s vastly cheaper to put shoes on people than to cover the entire world with carpet.” I’m not sure anyone has actually done the math on how much it would cost either to provide all disabled people with various mobility aids vs. Making public spaces accessible. I suspect he might be surprised at the outcome as a single ramp benefits everyone who uses it while a specialty wheelchair (that is likely expensive) benefits only a single person. It also just maintains the idea that if disabled people want access to the world we exist in, that we should have to jump through hoops that don’t exist for everyone else.

The more just solution is to remove the hoops altogether and not make ability to participate contingent on changing the oppressed group so that the oppressor never has to change but can feel like progress has occurred.

Dear Strangers who Just Want to Learn About Disability, I am Not an Infobooth

TEDxSydney has been getting a lot of bad press from the disability community lately. This is because of their very poorly thought out #StellasChallenge campaign. The campaign sought to capitalize on the message and popularity of late disabled comedian Stella Young. The campaign has similarities to the doomed Starbucks campaign Race Together which sought to start unsolicited discussions about race between baristas and their customers. The short-lived campaign was soundly mocked by many and died a quick death.

Similarly the #StellasChallenge suggested that nondisabled people should begin asking disabled people unsolicited probing questions about their lived experience. This was supposed to help them better understand the disabled social experience.

Disabled people were however not wowed by the plan, which has been criticized for being implemented without the input of actual disabled people.

If it had been they might have learned that nondisabled strangers asking disabled people unsolicited probing questions already happens a lot.

It happens while we’re grocery shopping

It happens while we’re rushing to catch a bus

It happens while we are out with our children

Basically any time a disabled person leaves their house, they run the risk of being accosted by random strangers who feel entitled to ask personal questions about our lives and bodies. This has been happening for decades (at least I can measure how long it’s been happening to me in decades and I doubt it started with me). In all the time this has been going on, it doesn’t seem to have had a measurable impact on improving our experiences in society. Case and point, I still run the risk of being asked random questions about my medical history every time I leave the house.

Here is how I view these interactions. They are very much a power play which tend to boil down to a few motivations.

“You are different from me, explain yourself”

This comes from a pure place of privilege and power. The idea that you can start asking someone personal and often medical questions where ever and whenever you want without pushback. If you get pushback you become defensive and say things like “calm down, I’m just trying to learn” or “don’t you want to be an advocate for yourself?”

“Your presence here makes me feel uncomfortable, comfort me by being compliant and nonthreatening”

This comes from ignorance and fear and an inflated sense of danger. Why people find disabled people inherently frightening I can’t fathom. Getting over their prejudices does not seem to be a viable option. We are expected to coddle them and not react to their fear.

“I don’t think you should be in this particular space, justify your right to be here”

This happens when you show up somewhere they don’t expect you to be like in a work or education setting. This is where you hear derisive comments about “affirmative action” and “taking jobs or places from more deserving people”

These interactions always happen on a purely individual level and even if you manage to give the questioner what they want. It only applies to you. At best this is a way to humanize disabled people one at a time to a single person at a time, a circumstance that needs to be repeated every time you meet someone new.

So even if the practice of randomly demanding information of disabled people wasn’t invasive and oppressive, it is not an effective teaching tool.

If the goal is to truly learn about the disabled experience, it should not be coming from a single acquaintance or a perfect stranger. While there are a myriad of stereotypes about disability. There is an even broader array of experienced within the disabled community. It is unreasonable to expect a single individual selected at random to be able to do that diversity justice.

In fact the very idea that speaking to individuals is a good way to learn about disability, only reinforces the idea that disability is a uniform experience.

A far better way is to engage with disabled people on their own terms and to engage widely. This way you don’t risk interrupting us when we’re living our lives and have plans. It means we’ve invited you to engage, usually in spaces where we have some control if the questions get inappropriate or offensive. It also shows a more real desire to learn and engage in discourse rather than an interrogation.

Some examples of places you can look

Blogs (like this one or many others)

There is an entire academic discipline called Disability Studies. Some universities with these programs offer their courses online if you don’t have a program near you (University of Winnipeg is one).

Ultimately remember that the lives and time of disabled people have value and that we don’t owe you explanations for our diagnoses or our assistive devices simply because it is convenient to you. We deserve to be able to exist in the world without harassment.

And if you are genuinely trying to learn remember that a person saying no to answering your questions is a lesson in and of itself. Respect it.

Disabled People Don’t Exist to Make You Look Good

I have already discussed the issue of inspiration porn on this blog before. What I was discussing last time was the use of images or videos of disabled people doing everything from the mundane to highlighting actual achievement. The major issue in these images is that they either celebrate disabled people for simply existing or fail to contextualize what it really takes for us to succeed at a level of merit. Both are dehumanizing and need to be critiqued and hopefully stopped. There is however a third form which is actually much more insidious.

Images or videos of nondisabled people doing everything from simply deigning to be in close proximity to a disabled person or being helpful. In these instances, regardless of how small the act on the part of the nondisabled person, they are treated as heroes. These stories (and they are often just fabrications based on stereotypes) often go viral online as people applaud the perceived kindness.

This kind of narrative completely objectifies disabled people and places them in the default role of victim. These stories also frequently occur without the disabled person knowing that they are being photographed or filmed much less that the resulting media will find its way online or in a news report.

A couple years ago a picture started making the rounds on the internet. It was an entirely innocuous image of three young men eating lunch in a university cafeteria. Two of them were athletes and the third used a wheelchair. The image was framed as this grand act of kindness. The Huffington Post covered it with the headline “North Carolina Football Players Join Student Eating Lunch Alone“. The picture showed up in feel good lists with titles like “35 Pictures that will Restore Your Faith in Humanity” in the list the picture is still framed around the assumption that the athletes were performing an act of charity by eating lunch with the man in the wheelchair. It also assumes that the man in the wheelchair has no social circle and requires an act of charity for social interaction. It turns out these assumptions were false.

It turns out that one of the athletes had been friends with the wheelchair user for years. They ate lunch together often. This kind of image is dangerous because it normalizes the idea that social interaction with disabled people take an extraordinary act. It rejects the idea that disabled people can and do create and maintain normal and fulfilling social relationships. /by disregarding this reality it further normalizes the idea that it is ok to feel uncomfortable around disabled people. Look they treat other people like heroes just for sitting with them at lunch.

Even before knowing the truth behind the photo it not only did not restore my faith in humanity it actually killed it. How bad must the social view of disabled people be that nondisabled people could be celebrated just for being willing to associate with us. The bar couldn’t be set any lower.

More recently another story has emerged, this time in the form of a feel good news piece. The piece includes amateur video and captures a fast food worker helping a woman in a wheelchair eat her meal.

This story has some very troubling elements beyond the fact that anyone thought that this was newsworthy much less something that should go viral.

I first encountered it in my Facebook, at the time, I intentionally avoided watching it. I knew what it would be and I knew it would be bad. I eventually watched it when it came up again on Twitter during a weekly chat on disability in the media (You can follow or participate Saturday nights 9:00PM ET with the #FilmDis).

While watching it not only were my worst fears confirmed but the video is actually worse than I expected.

In it there is not only the over celebration of a nondisabled person assisting someone who is disabled. We also learn that the restaurant is inaccessible, the woman has to wait in the parking lot until someone notices her and lets her inside. Predictably the reporter is to busy congratulating everyone willing to help her inside to consider the implications of the inaccessible building.

The video shown in the report was filmed by another patron without the woman’s knowledge or consent. In fact the reporter even makes a point of clearly saying

We don’t know her name or her story

She had no idea she was being filmed or that she was going to end up on the news, so had no say in how she was presented or talked about.

This is the norm for this kind of media. It depends on the passivity of the disabled person, so that stories can be woven around them for the benefit of others. These stories don’t educate the public about disability. They just reinforce the idea that disabled people are passive and their only positive impact on the world is by giving nondisabled people the opportunity to look good by helping them. No active recognition of the humanity and individuality of the disabled person is necessary.

I am not suggesting that nondisabled people shouldn’t help disabled people. They absolutely should but they should not do so in search of accolades. They should also avoid those accolades unless they come from the person they are helping. Otherwise it is just nondisabled people patting other nondisabled people on the back for helping disabled people and then dehumanizing them by publicizing their life without their input.

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.

Sneaky Racism, I Wish You Wouldn’t Show Up in My Facebook Feed

racist bullshit

So today, I will be deviating from my usually disability focused writing because stuff like this really pisses me off.

The above image reads

Doesn’t Make Much Sense, Does It???

Homeless go without eating. Elderly go without needed medicines. Mentally ill go without treatment. Troops go without proper equipment. Veterans go without benefits that were promised. Yet we donate billions to other countries, and excessive immigration before helping our own first. 1 % will re-post and 99% won’t. Have the guts to re-post this. I KNOW I’m in the 1 %.

This image was created by a British political group called Britain First. Britain First is an offshoot of fellow political group the British National Party (a group that has only allowed non-white members since 2010 and then only after a court order). Britain First is staunchly anti-immigrant. They are also anti-Muslim. In 2014 on two occasions group members entered Mosques to either hand out Christian literature or simply berate worshippers.

I personally find the content of the image abhorrent regardless of its connections to Britain First. I call is sneaky racism though because not all people recognize the racist undertones or feel they are overshadowed by the call for increased social services.

So lets look at what the text actually says.

It starts off by listing a lot of serious social problems. Poverty affecting the elderly, the lack of effective available help for people with psychiatric disabilities (psychiatric consumers/survivors). The lack of appropriate funding for the military (I’m not sure I agree with that one) and the lack of supports and services for returning veterans.

These issues are so common that the fact that I am Canadian and the friend who posted it was also Canadian make these issues relevant even though the target audience was British people.

Do these issues need addressing? Absolutely, these issues and many more.

What is causing these problems?

Britain First makes no clear claim regarding the actual causes of poor social funding but they strongly imply in this image that government spending on international aide and immigration supports are taking money away from natural born Britons. By extension any Canadian or anyone from a country in the Global North posting it is implying the same thing about their own country.

It implies that foreign aid is a one way flow of money from the donor country to a foreign recipient with little or no return. Foreign aid is in fact much more complex than that.

Immigration is also more complex than foreign national entering countries for the purpose of taking jobs and using social services. Often they are brought in to meet a need or if immigration is abused it is more likely at the hands of locals than the immigrants.

Take for example the much maligned Temporary Foreign Worker program in Canada. Workers were only to be brought in if there were no qualified Canadians to fill those jobs. Yet there was story after story of employers firing Canadian workers in favour of TFWs.

In all these cases, it was not the immigrant at fault but the Canadian employer. The immigrant usually thought they had found a work opportunity and took it. Unfortunately once in Canada they were sometimes abused by their employers.

In reality the lack of funding for social programs is far more complicated than funneling money into one area rather than another. If a country cut funding for immigration and aid, there is no guarantee that it would be be sent to social programs.

Here in Canada the government has recently been criticized on an international level for not sending enough foreign aid.

So on the face of it, the Britain First Image is misleading at best and dangerous at worst.

It creates an us vs. them situation and the them is quite often people of colour. While it is true that white people immigrate, they are not the most noticeable additions to a society dominated by other white people nor are white people the primary recipients of foreign aid. That lack of explicit racism lets people argue that it’s not about race but the reality is that this argument is naive at best.

Despite the actual textual argument in the image, this picture still ended up in my Facebook feed. Posted by someone, I would not generally classify as racist. Yet when I explained the origin of the image they simply denied personal connections to racism. They also voiced personal support for both immigration and foreign aid but refused to acknowledge the problematic undertones of the image and argument they had shared.

Now some of this is likely due to a combination of not thinking to critically before hitting the share button and cognitive dissonance. No one wants to think that they have violated their stated belief system (in this case nonracist and social justice oriented).

I however think that posts and images like this are actively designed to fool people into sharing them to both expand an idea outside the insular group that holds it and in so doing make that idea seem more popular than it actually is.

This image starts out with an easy to agree with premise that people feel connected to. People are suffering because of a lack of social services. They then present a hypothetical strawman, the foreigners. They keep the connection vague and avoid overtly offensive language like slurs. They hope you stay with the emotional connection to suffering. They ignore that immigration and foreign aid* can also be tools to combat suffering.

The post then dares you to share it. It goes further than that. It suggests that people who share it are brave. YOU could be a hero. YOU could be the voice of reason to the majority who won’t share it. This framing in conjunction with the emotional impact could be more than enough to convince the uncritical to hit share.

This is not the first image I have seen that dares the viewer to share it. In some ways I think images like this have replaced the chain e-mail that used to promise luck if only you would share it with at least 15 other people. It plays on superstition and a desire to do good.

The internet can be a powerful place for activism but if the activism you are willing to do consists solely of posting easily shareable images. I would ask you to reconsider. It is all to easy to post something you only partially believe in because you missed the problematic undertones or you are simply trusting that your friends will know you didn’t mean those parts. If you actually want to do good, make a personal statement don’t share or copy and paste, at least then there will be no doubt where you stand on an issue.

*I am aware that foreign aid if fraught with controversies over its roots in colonialism and that the limitations placed on recipient countries can add to suffering. This is an important issue that needs to be discussed. For the purpose of this blog post I am focusing only on the racist overtones of using racialized groups as the boogeyman to further racist agendas.

When Supposedly Progressive Guides to Talking About Disability Get It Wrong

So I am very passionate about the language of disability. I really want it to progress to a place where people are not misrepresented or marginalized by the language used to describe them. So I get very frustrated when nondisabled people coopt the narrative and through well intentioned ignorance set the movement for inclusive language back several paces.

Take for example this article by Merrill Perlman published on the Columbia Journalism Review titled The Proper Terminology to Use When Writing About Illnesses.

The authors stated intent is to help others use more respectful language when writing about “illness”. She fails immediately because from reading her article what she means by illness is actually disability and they are not synonymous. Disabilities are the ones she most frequently references are not diseases and should never be discussed in such terms. While some illnesses can be disabling they have distinct differences from disabilities like paralysis, cerebral palsy or down syndrome. She does briefly reference how to address a serious diagnosis (cancer). She however never differentiates between disability and disease. People with disabilities are not ill and many of us don’t want a cure, which is good because for many of us a possible cure is unlikely to surface. Illness is closely linked to suffering a word she acknowledges should not be used in conjunction with disability. I have cerebral palsy and autism and neither of these is an illness. The flu that I’ve been fighting the last few days is. Please be aware of the difference.

Her only accurate insight seems to be in what actual words should be avoided. She  counsels against using words like victim and suffering. I can agree with that.

However, her disability specific advice leaves much to be desired. She starts out with physical disability, saying,

“As a society, we’ve gotten better at accepting terminology that is less slur and more description: “Developmentally disabled” is better than “retarded,” and while “physically challenged” is still not as common as “handicapped,” it’s thankfully more common than “crippled” nowadays. We mention that a child is “adopted” less often, and usually only when it’s relevant.”

Society may be aheah of Perlman here, the reason that physically challenged isn’t used as much as she’d like is because it’s genuinely awful. If you are a third party writing about someone else please never use it. As far as I’m concerned it’s as bad as handicapped. Disabled people don’t face challenges, We face barriers. The fact that there are stairs and no ramp isn’t a challenge it’s a barrier. The fact that able-bodied people often underestimate those of this with disabilities is a barrier. Framing our lives as a challenge justifies systemic barriers because it’s much easier to believe someone can overcome a challenge than a barrier. So in keeping with the fact that Perlman wants to help, I will offer a better term:

If you are in North America use Person with a disability

If you are in the UK, Ireland, New Zealand or Australia use disabled person*

The other passage I find problematic is this,

“Where we often fail, though, is in using terms associated with illness and infirmity. “Confined to a wheelchair” or “wheelchair-bound” have appeared more than 1,000 in Nexis in the first quarter of the year. Yet those give a negative associate to the person in the wheelchair. Simpler, and more accurate, would be to say someone “uses a wheelchair.” Even better, say why the wheelchair is needed: “She has used a wheelchair since she her legs were paralyzed in a diving accident 10 years ago.””

It starts out pretty good, uses a wheelchair or wheelchair user are much preferable to wheelchair bound. I get confused however about how it is simpler to just describe the disability. No it’s really not. It comes off as voyeuristic and unnecessary. Perlman even contradicts herself later when she says that disability shouldn’t be mentioned unless it is absolutely pertinent. I am sure there are times when it is pertinent to mention that a person uses a wheelchair but the reason why is entirely irrelevant. Needing to mention a disability is not the same as needing to rehash a person’s entire back story.

I respect Perlman’s intent with her article but I question the follow through. Language is so important to how the world around us is framed. It affects how people are viewed. I will close with some additional tips for third parties (nondisabled people) writing about disability.

Don’t just avoid physically challenged when speaking generally also avoid any euphemisms like “special needs” or “differently-abled”

Be prepared for the fact that the disabled community is very diverse and opinions on personal labeling may differ from political correctness. When referring to an individual, please respect personal labels.

When in doubt try and find answers from actually disabled people.

*For an explanation of why language differs geographically see here

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.