Friday, April 11, 2014

Dive into Worldbuilding! - Disability and Accommodation (A Google+ hangout report with video)

We had a great discussion on this topic with today's group, including Lesley Smith, Lillian Csernica, Glenda Pfeiffer, and Reggie Lutz.

Disability is an issue that is often problematic in fiction - either avoided entirely, portrayed as a problem to fix, or portrayed as something that can only bring suffering (or leads to people wishing they were dead). People with disabilities are either marginalized by the work, or excluded altogether.

We listed some books we had enjoyed where people had disabilities. I mentioned Wonderstruck by Brian Selznick. Glenda mentioned Miles Vorkosigan from the Vorkosigan Saga by Lois McMaster Bujold, who struggles to differentiate his disabilities, caused by poison, from mutants who are feared by society. We wondered whether Tyrion Lannister from A Game of Thrones would count as disabled (and someone mentioned the character who loses his hand). The Ship Who Sang by Anne McCaffrey is an amazing one. Participants also mentioned The Speed of Dark by Elizabeth Moon, and Falling Free by Lois McMaster Bujold.

Lesley told us about working with her service dog, Uni. She told us that dog behavior changes a lot between times when the dog is on duty and off duty. Apparently Uni accomplishes a "Red Sea thing," parting people on the street when Lesley is walking, as well as helping her cross streets. Uni also knows routes, and if Lesley says, "Let's go to Starbucks," will happily take her there.

Lillian told us about her two sons. Michael has cerebral palsy and seizure disorder. From her experience caring for him, she knows how to use a hospital bed, a lift, a wheelchair, a suction machine, and all kinds of medical equipment. John is on the autism spectrum and has language processing difficulties. Lillian says that they are an adaptive household, and are accustomed to doing whatever works.

I mentioned that adaptive technologies include such things as glasses, or ear horns. Every single one of us at the hangout was wearing glasses! Adaptive technologies have existed for a very long time. Lafcadio Hearn, who had bad eyesight, had a special table built for him that would hold his papers right up close to his eyes.

We spoke about the deaf community. Because their disability leads to them using a different form of language (sign language), this means that the deaf also become a language community, and thus also a unique cultural community. Therefore an accommodation like a cochlear implant, which would be a way to eliminate the disability, becomes problematic because it becomes a threat to that person's membership within the linguistic and cultural community of the deaf. There is no guarantee that an accommodation to disability, no matter how effective, will be automatically welcomed by those it is supposed to help - especially if cultural identity and group membership are at stake.

Lesley also emphasized that a disability described by an umbrella term like "blindness" can be caused by any number of different issues, and that this is why there are no miracle cures. Lillian remarked that "autism" is a similar umbrella term, which lumps together all kinds of different non-neurotypical issues. She emphasized that there is no "band aid" to deal with a phenomenon of such complexity.

Historically, disability in fiction has sometimes been an indicator of an evil character - but in this day and age, that approach has become (dreadfully) inappropriate and insulting to disabled people and communities.

We spoke a bit about accommodation of disabilities in Japan. Lesley shared that she had a great time traveling in Japan without her dog. I mentioned that the accommodation of wheelchairs has increased enormously since I first lived there, probably because of Japan's aging population. Lesley told us that service dogs are not allowed on escalators without training because of the risk of them catching their feet at the top of the escalator.

Glenda noted that the presence of accommodating devices and infrastructure says a lot about the culture that creates them, and about their understanding of disability.

We also spoke about invisible disabilities, such as autism, depression, heart conditions, cancer treatment, PTSD etc. People dealing with these disabilities also often have to deal with other people who won't accept the fact that they are disabled. Lesley asked, "Why should you have to justify your disability?" There are even hate crimes against the disabled (attacks on people with service dogs for example). Lillian mentioned an incident where she had to explain to someone why her son John was talking to himself in order to avoid a more serious altercation.

Lesley said that once you have a guide dog "you become public property." People always want to touch your dog, even when it is on duty. They also have opinions about how you should be treating it, and some people have even been known to be reported to the police for taking their service dogs out on very hot days. Are you abusing the dog under such circumstances? Is it reasonable to expect people who need service dogs never to go out when it's hot? We also spoke about pregnancy and how people often try to touch pregnant women.

It's important to acknowledge that disability exists - and to have characters and fictional societies recognize that it exists.

Reggie said (rightly) that we often represent the differences that exist in our world in the fictional context. Fiction is used as a metaphor for our own world, and fiction is ideal for exploring issues of difference, which is why it's important to have representation of different groups.  We should be careful to provide a model of society that has optimal relevance to our story plot.

Here are some links:
An anthology of diverse fantasy
An important article about how to handle representation well in your fiction

Thanks again to everyone who attended the hangout! And here is the video for those interested:


  1. Thanks - I was looking forward to this post - and it was delayed, and I was afraid it wasn't going to happen.

    I deal with the invisible disability of the main character in Pride's Children (mainstream, no SF, unfortunately - maybe the next one). Disabled people are the largest minority in the world - but have a tendency to have to work so hard just to exist that they are barely seen. Add to it the whole caregiver thing, and the societal belief that someone disabled has done 'something wrong' - and it could never happen to them - and it brings up a lot of fear.

    Whereas being disabled just is. You deal with it - as with anything else in life - as well as you can (and whine if you're a whiner).

    Pretending it doesn't exist DOESN'T make it go away it just makes your mother, your child, yourself feel invisible unless bothering other people.

    It doesn't actually take that much more space in fiction to deal with disability - a piece here and there, and then writing that does double duty: "He rolled up the ramp" instead of "He strode up the ramp."

    Like aging. Most people in fiction are young and healthy. Not complaining - you have to be energetic and mobile for many of the adventures humans get into. But not all.

    Good post. Thanks.

    1. Yes, well, I did make sure to get this one finished! I'm glad you liked the post; I felt it was important. I think it's not too hard to work it in to one's fictional worlds... just requires thought and planning.