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I have no definitive answers to the pervasive questions regarding whether Harper Lee truly wants her previously unpublished novel Go Set a Watchman published or if she in her old age has been coerced by the financial motivations of others.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.

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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.

When Your Disability isn’t Considered in Grade School

I have hemiplegic cerebral palsy and am on the autism spectrum. I wasn’t diagnosed with the latter until I was eighteen and had already graduated high school. In some ways the total lack of knowledge my parents had about cerebral palsy contributed to this lack of diagnosis. My extreme sensitivity to touch and textures was attributed to my CP. My behavioural issues were never linked to my hyper-sensory issues and as such was generally considered to be poorly behaved and to have issues with anger management.

So though my autism absolutely affected my grade school experience, it was not something my parents or teachers were aware of. So for the purposes of this post, I am going to focus mainly on how having CP affected my experience of government mandated education.

Doctors would often describe my cerebral palsy as mild. As far as I can tell that mostly just boils down to the fact that I can walk without the assistance of a cane or walker and can climb a flight of stairs.

Having a disability that has been labeled as mild by the medical establishment also seems to have the added pressure of being considered “not disabled enough” to need accommodations.

When disability and education are discussed it usually follows one of two streams.

Inclusive education: where disabled and nondisabled students are taught together with added supports for the disabled students.

Or Segregation: where disabled students are taught separately from their nondisabled peers.

Each group has their pros and cons and supporters or detractors.

In my case neither of these scenarios was even considered. I was just dropped into a school that had no supports for disabled students. I was one of only two students in the school with a disability. The other was in the English stream whereas I was in French immersion, so while we were aware of the other, we had little contact with one another. We might as well have been attending different schools.

Because my disability wasn’t really considered to be something that required consideration or accommodation, it was never discussed that I might face physical barriers to access the school or activities. As such when I encountered them it never occurred to me that I could or should complain or demand access. I was already being viciously bullied by the other students and was keenly aware that if I mentioned my difficulties, I would just be further separating myself from my classmates.

As I have mentioned in a previous post, one of the issues I encountered at this school was an inability to use the sinks in the school bathroom. This being the early 1990s, those motion sensor taps hadn’t been invented yet so in order to conserve water, the school installed sinks that had rounded knobs that stopped the flow of water as soon as you let go of them. I did not have the hand dexterity or strength to use those taps. It never even occurred to me that I should complain. I thought that the inaccessibility was normal and acceptable.

Other than that in those early years my difficulties came up when scissors or tracing were involved. I could not hold objects still with my weaker limb in order to trace a object or cut it with my dominant hand. I had a lot of particularly sloppy looking art projects as a child.

Gym class was generally awful at both my elementary schools but there was a situation at this first school that was particularly bad and occurred because my disability was never considered and I was expected to just be abe to do everything that my able-bodied peers could.

It happened in grade 5 which was also the year I insisted on transferring schools. The teacher had planned an alternate gym activity. We were going to ski in the playground.

All the other children put on their skis and immediately began racing down the low hill that the school was built on. I on the other hand found that as soon as I put on the skis (which were poorly sized to my small frame) that I was immobile. My left leg was to weak to get me moving. I quickly fell down. I decided the best course of action was to just stay still until the class was over. Unfortunately the teacher noticed my nonparticipation and demanded to know why.

I explained that I wasn’t able to ski but assured her I was fine and didn’t mind. She however concluded that if I couldn’t ski than no one could. Against my pleading, she recalled my classmates told them the fun was over and even pointed to me as the cause.

My peers spent the rest of the day making it very clear that they were less than impressed that I had ruined their fun.

I could have easily just played outdoors without skis, there were several sleds at school as sliding down the hill in Winter was a common recess pass time but instead, I was made the scapegoat for my teacher’s lack of imagination or consideration.

Unfortunately my move to a new school later that year did nothing to improve my situation as I became the only disabled student in the entire school, a trend that continued into high school.

While in high school, I continued to have the expected issues in gym class, where my lack of athletic ability was further highlighted because my school had added a points system to the curriculum. Our performance was publicly displayed on a chart where I was placed dead last by a wide margin. These placements were supposed to be anonymous but were most definitely anything but. The comparison was supposed to incite competition but was really more of a ranking system.

High school gym was where I first really advocated for myself but it did not come from a new found sense of entitlement to access and inclusion. It came from a real fear that if I participated in the outdoor rollerblading class that I would risk real and serious injury. I had to spend the entire class sitting in the change room while I waited for the others to return.

The class that actually had some of the worst access in high school was actually Grade 9 & 10 Science. My social isolation followed me from elementary to high school and when it came time to find a partner in science class, I was frozen out. There was an odd number of students so I was left out. I tried to find a pair who would let me work with them but was repeatedly refused. I asked the teacher to assign me to a pair but he felt that it was not his responsibility. I was thus forced to work alone. I had to try to complete experiments that had been designed for two able-bodied people alone and with only one fully functioning hand.

This continued with me underperforming my experiments until due to my lack of dexterity I burned myself with hydrochloric acid. It would have continued beyond that because my teacher remained unmoved by my obvious disadvantage but finally a pair in the class took pity on me and allowed me to work with them.

My troubles in science class weren’t over though. When we started doing experiments where our findings had to be written in charts that we had to draw by hand with a ruler to our teachers precise specifications. As I have mentioned, I don’t trace well, I can’t hold a ruler steady so my charts looked sloppy and I began to lose marks for presentation even if my findings were correct.

I explained the reason for my difficulties and asked if I could make the charts on the computer in advance and fill in printed sheets by hand. I was refused.

My request in no way threatened the academic integrity of the experiment and would have stopped me losing marks for something other than a wrong answer but I was refused and that refusal did not come with a justification.

I never complained to the school, I don’t even think I mentioned it to my parents at the time. It never occurred to me that that complaining was an option. I didn’t know I had the legal right to accommodation.

The reason I did not know this was because I had been completely isolated from other disabled people and to the adults around me this was seen as a good thing.

In an ableist society, a disabled person’s value is determined by how little effect their presence has on the nondisabled people around them. This creates a hierarchy of disability that is often internalized inside the disability community. The fewer accommodations you need or reject using despite need means you have more value. You are less of a burden.

The more obvious your disability or the more you are seen as part of the larger group of disabled peopled, the less value you have. This is a systemic problem and often leads to disabled people comparing themselves to others and finding the others wanting.

People brag about the accommodations they don’t use. This reinforces the idea that needing and accepting accommodations makes you lesser.

I categorically reject this idea because I have experienced the harm and marginalization that is the result of being denied the help I need to succeed.

My experience has also made me acutely aware of the harm that total isolation from disabled peers can cause. I never knew any better and that ignorance did not mitigate the harm I experienced through lack of physical or social access. Perhaps if I had been aware of other disabled children, I might have known to fight back against those instances of oppression where changes could be made.

In my isolation, I never knew that change was even possible.

Open Letter to People Who Want to Pray that I be Healed

Dear Religious Person

I am writing this in response to your unsolicited offer to pray that God will heal me of my disability.

Thank you so much for your unsolicited concern for my health while I was just going about my day. I may have been doing any of the following.

Walking home from school

Running to catch the bus

Having coffee with friends

Existing in public for any reason that has never been for the purpose of attracting the pity and concern of random strange people whose faith I don’t actually share.

Does your prayer go something like this?

Dear God

I am told that you are an omniscient and faultless deity but I saw something today and I think a cosmic mistake may have been made.

God, you may not believe this but I saw a disabled person today and it was very distressing. I mean being disabled must be awful. They can’t go everywhere i can. They can’t come to my house because there are steps to reach the door. I mean this one could walk and wasn’t in a wheelchair so she probably could but she had this unsightly leg brace and stairs can’t be easy. She must feel so alone. I don’t see people like her often. There are no people like that at my church or job.

I just know that the only thing that will make her life better if she was more like me. I have already approached her and explained that I understand her pain. I have also explained that the only possible solution is Jesus. There are no earthly steps that could ever improve her life so long as she is disabled.

So God, Please help me help her by granting my prayer. It would make me so happy to know that she isn’t suffering anymore.

Amen

I’m sure that prayer made you feel so much better. You tried.

I however would suggest for you a different prayer. In future before you interrupt someone just living their life to point out their fundamental difference from yourself. Try and avoid suggesting that they are flawed and in need of fixing. Instead say this prayer.

Dear God

Please help to to create a world where all people are welcome and accepted. Particularly God help me to create a world where other people do not have to fundamentally change their natural selves to make me more comfortable.

Amen

If you are unable to do the latter. Feel free to pray for me. Just keep it to yourself. I’m sure they will be just as effective.

Sincerely,

Someone who just wants to get from A to B without incident