Burden – A Heavily Loaded Word

burden-to-the-rest

Not long ago I found myself delving into a Twitter discussion with author Michael Grant about representation of autism in literature, and in his Gone series in particular. Please note the phrasing. I can’t say I was engaged in an online discussion with Mr. Grant, because he ignored everything I said. As far as I can tell, Mr. Grant only responded to people he was relatively certain weren’t actually autistic. Regardless, I expressed my thoughts and then directed people who were interested to a thoughtful and concise review. Corrine Duyvis’s review was specifically written with an eye to autism representation in the books. Disability in KidLit, Review of the Gone series

The referenced heated discussion centered around the word burden. Michael Grant downplayed his suggestion a mother would be lying if she didn’t tell her autistic son he’s a burden by saying all children are inherently burdens. This attempt at a joke on the subject demonstrates lack of empathy concerning the experiences people with disabilities have had with the word.

A writer as prolific as Michael Grant must understand the importance of words, both in connotation and denotation. The denotation of the word burden is onerous: A burden makes life difficult for the person who shoulders it, with very little resulting reward.

The connotation of this word, for people with disabilities, is much worse. It carries the weight of THEIR EXISTENCE BEING A BURDEN. People with disabilities are widely portrayed as burdens in all forms of media (books, television, news articles etc)

Consider the movie/book Me Before You. The entire plot hinges on the idea the disabled character’s life is a nightmare, and he’s a burden to the non-disabled people around him. The marketing for the movie included the ironic slogan Live Boldly. The disabled character was left out of that slogan. In fact, his death by assisted suicide and subsequent will that left a substantial amount of money to the female main character is the reason she is able to do all the things he previously explained was evidence of living boldly. He believed she could not do any of these things with him. He also believed dealing with his own depression could not result in being able to live boldly. At one point in the novel, he has a best before date tattooed on himself. It’s the date of his injury. He never considered the possibility of being able to live boldly with a disability.

Consider the way journalists report on the murder of disabled people. There isn’t a week that goes by where I don’t read of another disabled person murdered by a family member/caregiver. The articles and news segments reporting on these events almost always include the idea that the murderer was devoted to the disabled person, and burdened by them. The language of the articles tends to forgive the murderer before they’ve come close to facing consequences. It also blames the victim for their own death. If their existence wasn’t such a burden, it wouldn’t have been necessary to murder them.

Consider the rate at which people with non-terminal conditions that are not causing chronic pain are using the option of Assisted Suicide in countries where it is legal. There are people with autism being convinced to end their lives by Assisted Suicide, because they are too much of a burden for their caregivers.

Consider the narrative created by Autism Speaks, the organization which supposedly represents people with autism. One of their propaganda pieces included an on camera interview with one of their board members. She sat with her autistic child and told the story of the day she had planned to commit murder/suicide. Her autistic child was right next to her as she explained the only reason she didn’t drive off the bridge that day was the thought of how much her non-autistic child would suffer.

Autism Speaks loves to center parents in their narrative. They use fear-mongering and tragedy as a tool for fundraising. How many of you haven’t read an article about the depression caused by having an autistic child, or that they will destroy your marriage and ruin your life? How many haven’t heard autistic people described as tsunamis and epidemics. You realize that both those things kill thousands of people and ruin lives?

Michael Grant admits in his response to Corinne’s review that he did very little research on autism before he included an autistic character. Her review more than amply proves that the result of this lack of research was to reinforce some of the most toxic characterizations of autism: tragedy, pitiable, nightmare, painful etc. I would argue no amount of research would have made Michael Grant be able to write an autistic character with more empathy than an actually autistic author.

Michael wrote more than one book in this series, with this same narrative. The damage is done. One of his fans pointed out that his opinion of people with autism is greatly improved since reading these books. Is that what we should be focused upon? Should we consider it a win that a person who previously was very ignorant of autism is slightly less so after reading these books?

This entire conversation started when a woman pointed out her actually autistic child read this book and saw his most deeply seeded fears confirmed: He is a burden.

We should not be centering the perspectives of non-autistic people over autistic people when it comes to this aspect of the Gone series.

Michael Grant’s flippant response (at best) demonstrates that he doesn’t have any appreciation for how deep the fear of being seen as a burden runs in people with disabilities. He doesn’t understand how it pushes disabled people to suicide, or keeps them in perpetual fear someone will one day try to kill them in order to relieve the world of the burden of their life. If he doesn’t understand these things, is he the correct person to be writing such a character?

I want to add that Michael Grant also suggested that the fact the boy could consider whether his life was a burden and express the thought means he must not be very autistic. Wow. So if a person with autism can speak for themselves, you think they aren’t autistic enough to have a debate with you on the merits of your representation of autism? This isn’t right. It is more evidence you probably weren’t the best person for writing such a character.

 

 

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One thought on “Burden – A Heavily Loaded Word

  1. Pingback: 70 of the absolute BEST #ActuallyAutistic blog posts I’ve ever read (300th post) – the silent wave

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