Analogy

*Sigh* This started out as a nice, brief analogy. Then it grew to take into account more and more aspects of the disability community and it’s relation to the rest of society. Anyway, here it is. What do you think?

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This is the disability community ...

100 people are packed into a leaking rowboat, with the water half an inch away from spilling over into the boat.

1/4 of them are trying to transfer to a couple of newer, safer-looking boats visible nearby.

Another 1/4 are trying to get ashore, which is further away, but it’s where all their friends and family are.

Another 1/4 are trying to get everyone else in the boat to sit still, out of fear the boat will capsize and drown everyone immediately.

The last 1/4 insist there’s nothing wrong with the boat at all that can’t be overcome with hard work and a positive mental attitude.

Ten of the people in the boat keep wondering aloud why another ten are even there, since they clearly don't really belong on the boat.

About 1/3 of everyone in the boat is wearing life vests, so their chosen responses to the situation are sincere, but mainly philosophical and less personally urgent. About half of the life vests actually have holes in them, but the wearers don’t realize it.

All around on the shore are spectators who are either encouraging the people in the boat ... offering sometimes helpful, sometimes contradictory, sometimes obvious advice ... or discussing among themselves which of the people in the boat are inspirational, and which are negative and counterproductive.

A few people are swimming out from the shore to help. Although they all mean well, about half of them will probably drown themselves, taking a boat passenger or two with them.

Starting Somewhere

Have you seen this yet? Watch it now ... (TW for heavy drinking and bleeped profanity):

Judy Heumann and her fellow activists begin the Section 504 sit-in, paving the way for the passage of the Americans with Disabilities Act. Watch full episodes of Drunk History now: http://www.cc.com/shows/drunk-history/full-episodes Drunk History airs Tuesdays at 10/9c on Comedy Central.

Honestly, I didn’t come up with this topic just as an excuse to post and talk about this amazing Drunk History video about an important event in disability history, the Section 504 sit-in. As it happens, I have been thinking a lot lately about an often heard phrase in disability advocacy, “You have to start somewhere!” Then this skit aired on Tuesday it seemed to me like a perfect answer to why the phrase ... though technically true ... has become so irritating.

“You have to start somewhere” shows up a lot in disability activism and culture discussions in which one group of observers complain that a disability-themed movie, TV show, advertisement, inclusion activity, or awareness campaign isn’t good enough, and another group defends it because although it’s not perfect, “You have to start somewhere!” Basically, it’s about different factions within the broader disability community calibrating progress in very different ways. What’s groundbreaking for some is often old hat or even retrograde for others.

This problem relates to more concrete matters, too. Last week, the U.S. House of Representatives passed H.R. 620, a bill that would institute additional waiting and grace periods for businesses to comply with the Americans with Disabilities Act. One of the underlying premises of the bill is the notion that the ADA and accessibility standards are in some sense new, unusual things that business owners can’t be expected to know about by themselves. They need advance notice that they might be out of compliance, and then extra time to figure out what they need to fix it. They shouldn’t be punished for not having their act together on these newfangled regulations.

That’s where the Drunk History skit comes in.

The 504 sit-in was specifically about accessibility, non-discrimination, and creating a more modern, progressive cultural understanding of disability. And it took place in 1977 … 41 years ago. Now, I’m just old enough to have lived as a disabled person in a time when the ADA, disability rights, and cultural representation of disability were actually new things. In the late ‘80s and early ‘90s, we were, in truth, “starting somewhere.” But we can’t still be “starting somewhere” 41 years later, can we? Obviously, progress takes time. It took another 13 years after the 504 sit-in for the ADA to pass. But at some point, doesn’t the clock sort of run out on what’s considered “new” and “just starting?” Doesn’t the simple passage of time suggest that we eventually should expect a better understanding of disability to be widely shared and integrated into the fabric of “stuff people just know?” This then allows us to move ahead to the next steps, and the steps after those.

I think one problem is that a segment of the disability community always views disability matters of all kinds as “new,” because a portion of the disability community is always going to be made up of newly disabled people and families of newly disabled people. It’s all legitimately new to them. That’s understandable. But eventually, it has to stop being new, even for newcomers. And knowing the actual history of these movements and ideas is key, because each new generation of disabled people is not, in fact, the first to experience disability or think up the idea of disability rights. It may seem that way to some of us, but that’s what looking around you, talking to other disabled people, and looking up a bit of history is all about.

It’s amazing that of all things, “Drunk History” has given us such a great opportunity to remind ourselves that the disability rights movement is well past “starting somewhere.”

Disability Communities ... Followup

Last month, I blogged about the idea that there are actually several different "Disability Communities," based on the major different approaches disabled people have to their disabilities. In that post, I proposed 5 of these communities or approaches, something like this list:

Activism
Culture
Achievement
Assimilation
Cure

Note: I have decided to rename "Bootstrapping" and call it Achievement instead, because "bootstrapping" is a little too dismissive or judgmental. I am also simplifying "Cure Questers" to just plain Cure.

Let's look at these categories in a little more detail:

Activism - Examples:

◎ Personal participation in activism
◎ Problems of disability are mainly social and structural, and therefore correctable
◎ Activism is a valuable and important way of addressing disability issues
◎ Disability activism is urgent, exciting, empowering
◎ Hope for better future through better disability policies & services

Culture - Examples:

◎ Regularly use and/or produce disability-oriented media
◎ Enjoy discussing & exploring disability as a social identity
◎ Disability is a culture, a personal and collective social identity
◎ Disability identity is a source of personal & collective pride
◎ Hope for better future by combating ableism and promoting disability pride

Achievement - Examples:

◎ Focus on self-improvement, education, training
◎ Focus on getting a good job
◎ Pursuit of maximum achievable financial independence
◎ Value maximum achievable practical independence, self-determination
◎ Hope for better future by personal achievement and proving disabled peoples' capability

Assimilation - Examples:

◎ Goal of achieving mainstream social acceptance
◎ Social acceptance is signaled by others ignoring or looking past disability
◎ The ideal is a "normal life" in which disability is insignificant
◎ Disability is an inconvenience, a challenge, an obstacle ... not really an identity
◎ Hope for better future by making non-disabled feel at ease with disabled people

Cure - Examples:

◎ Goal of curing or substantially reducing your disability
◎ Disability is mainly a personal health and fitness issue
◎ Activism focused on medical treatment or prevention of specific disabilities
◎ Fundamentally dissatisfied with having disabilities
◎ Hope for better future by preventing disabilities

The original post was just table setting for a bigger point, which is that I believe most disabled people are unique blends of these approaches. Mapping out how each of us invests in these approaches can reveal a lot about what kinds of disabled people we are. At the same time, I think it can also help make sense of the frequently huge differences and divisions in the disability community as a whole.

I'll start with myself.

I wanted to make some kind of graph or chart to illustrate where my own disability thinking sits among these different approaches to disability. So, I gave myself 10 "points" to distribute among the five approaches ... the more heavily invested I believe that I am in each category, the more points I allocate to it. Here is what I came up with:

Activism: 4 - My main interest is in activism, and my overall view of disability is that the key to better life for disabled people is better disability policy. Also, I tend to like disability activists, and discussing and campaigning for disability issues is stimulating and exciting to me.

Culture: 3 - I am also interested in, and a small producer of disability culture. I absolutely believe that disability is an identity and that there is a real disability culture. However, this interest is still rather new to me, and I still occasionally find myself feeling skeptical of the importance some of my friends and colleagues attach to issues of identity, language, and representation.

Achievement: 2 - I care about my own success, not just as a person, but as a disabled person who can be an example to others. At the same time, the brand of disability activism that centers on conventional markers of success leaves me cold. In the end, I don't really think that a few splashy individual triumphs does much to change the social status of disabled people in general.

Assimilation: 1 - I care a great deal about having freedom, access, and formal integration, but I'm not that interested in whether I am fully assimilated and viewed as "just another guy" by non-disabled people. This is partly because I don't think that totally blending in is really possible for me, and partly because I've always been a bit of a loner, happy to be set a little apart from the crowd, whether or not it's because of my disability.

Cure: 0 - There is no medically or practically meaningful cure or therapy imaginable for my particular disabilities, which is probably why I have never been the least bit interested in such a thing. Meanwhile, there are things that can and should be done in society, things we already know how to do, that would make life better for disabled people.

And here's a graphic representation of all that:

What would your chart look like?

Next month, I plan on finishing this three-part series of posts by using this formula of sorts to look at how my profile has changed over the years, from my youth, to young adulthood, to the present day me. I may also try to chart out some other kinds of disabled people and disability organizations that have very different profiles, and emphasize very different approaches to disability.

Observations:

My instinct is that the majority of disabled people are mostly invested in a combination of Achievement and Assimilation, with a bit left over for Activism and Cure in specific circumstances ... such as the threatened loss of health care (Activism), or the prospect of significant pain relief from surgery or medication (Cure).

I would guess that the overall investment in Culture has grown a lot just in the last 10 years or so. Until recently, appreciation of disability culture was almost entirely restricted to people with a background in academic cultural theory, the kind of mindset and analytical skills you pick up in the liberal arts college experience. However, I think that social media has created much more direct, intuitive, and accessible entry points, opening up interest and participation in disability culture to a much wider audience.

For a long time, the Achievement approach to disability was synonymous with Activism. The goal of disability activism was almost entirely about ensuring equal access to education, employment, and participation in conventional middle class American life. This is changing. Disability activism is more ideological now, (not necessarily a bad thing!), more engaged in existential issues ... like long term care and eugenics ... and just a little less with public school inclusion and employment rates. These are still important, but no longer exclusive, unquestioned goals.

The most broadly shared, easy to understand approach is probably Assimilation. It's the one approach most evenly shared by disabled AND non-disabled people. It's message ... "Just treat me like everyone else," is simple and relatable. It has for a long time also been considered the most easily accomplished. However, in recent years, the disability community has become more skeptical of the prospect of achieving true assimilation and social acceptance. Also, some question the value of assimilation itself, as wholehearted embrace of disability culture becomes a more viable, fulfilling alternative.

This rubric of 5 approaches or communities seems like an especially good way of clarifying the fundamental differences between disability organizations as well as individuals. Those of us engaged with the disability community can probably identify by name organizations that exemplify Activism, Achievement, Assimilation, and Cure. Oddly, I can't think of a disability organization that belongs squarely in the Culture approach and community. Am I missing something, or is this actually an open slot for some new disability organizations that don't yet exist?

As always, your questions, thoughts, and critiques are most welcomed. And if you feel like sharing how you see yourself in relation to these approaches, do share!

Disability Communities (Plural)

Note: I am just about bursting with thoughts and feelings about the death / hibernation of the effort to repeal Obamacare, but it'll take me at least a few days to write something coherent. So, I'm going ahead with this mostly off-topic post I already have teed up.

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Most of my disability thinking lately has been about politics and activism within the disability community. And one of the starting points for my thinking about this is a growing realization that there is actually more than one "Disability Community."

This is not an original idea. Plenty of people have observed before that there are different sub-groups of disabled people. Some are defined by the type of disabilities they have, some by age, or which generation they represent, others by overlapping cultural, political, religious, or gender identities. In terms of philosophy, the most frequently cited distinction is between the Medical Model and Social Model of explaining and approaching disability. This is well covered territory.

I would like to suggest another way of subdividing the broader disability community. It's similar to the medical and social models, but instead of two categories, I want to propose five. I am talking about people with the same variety of disabilities, facing basically the same menu of problems and barriers, but whose different approaches to them make them sortable into a handful of distinct "disability communities."

Here is my list ... still a bit sketchy:

Activists ... Disabled people who not only practice activism, but view it as central to their idea of disability in society.

"Activists" believe that the key to a better life for disabled people is to make fundamental changes in disability policy. But activism is more than a means to specific ends. For activists, it is also an outlook that structures their understanding of themselves and their disabilities.

Culturalists ... Disabled people who are interested in the social meanings and interpersonal dynamics of disability.

Culturalists view disability as an identity that can be studied, ignored or represented, disparaged or promoted, despised or appreciated. Their deepest interest is in solidifying disability as a respected and appreciated social identity, a culture, and a community ... with internal pride and external recognition.

Bootstrappers ... Disabled people who focus on proving their worth by achieving traditional markers of social and economic success.

These typically include a quality education, career success, financial independence, family, and the material components of a middle class lifestyle. Bootstrappers seek these things not only to cement their independence, but to earn a kind of approval that they hope will outshine their disabilities.

Assimilators ... Disabled people who view their disabilities as unimportant inconveniences, and strive to be viewed as normal or ordinary by the mainstream, non-disabled community.

This is never quite as simple as disability denial. It's more of a craving or preference for normalcy, even anonymity. It is also the mindset of the many disabled people who have no deep interest in the disability experience, and view disability exclusively in practical terms.

Cure Questers ... Disabled people who primarily view disability as a medical condition or disease to be cured, fixed, or overcome.

They may or may not be well adjusted to their disabilities in the everyday sense, but either way, their higher commitment is to eliminating disabilities, for themselves and / or for others.

Which of these communities do you feel like you belong to? Do these categories make sense? Have I missed one?

Very few of us exist in only one of these communities, though most of us probably favor one or two pretty clearly over the others. In my next post I plan to add some details and examples to each description. I'll also get out my drawing and charting tools, and experiment with some Venn Diagrams to explore how our various disability communities overlap.

People Recommend, I Procrastinate

It happens to me a lot. Friends and relatives recommend some disability-related thing to me, because they know about my interest in disability issues and culture, and I “Like” it, Bookmark it, but don’t watch it. Often it’s because I assume it’s going to be some version of Inspiration Porn. Sometimes it's because the context or genre is something I’m not that interested in. Either way, I procrastinate. I resist jumping on what I perceive to be some sort of bandwagon. Then months later, I finally get around to reading, listening, or watching it, and BAM! I feel like a dope because it’s really great and I could have enjoyed it and talked about it earlier.

A couple of months ago, some friends and cousins tagged me on their Facebook shares of this violin player with disabilities who won an NPR "Tiny Desk Concert" contest:

Gaelynn Lea: NPR Music Tiny Desk Concert

It’s not exactly my kind of music, but it’s close enough that I enjoy it beyond Lea’s disability. And the way it’s all presented says everything that needs to be said without explicitly saying it … which is the best way to “have” your inspiration without it becoming Inspiration Porn.

I will try in future to try disability-related stuff out when people recommend it to me. Also, I’m grateful to Vilissa Thompson, (@VilissaThompson), for revisiting and reevaluating how we define and interact with Inspiration Porn, in a way that allows for genuine inspiration without being gross.

This Could Work

I’ve been hearing a bit about this new TV show Speechless over the last few weeks. The big news was that it featured a disabled, non-verbal character with a significant physical disability, JJ Dimeo, who is played by an actor with disabilities, Micah Fowler. That’s all I knew until this morning, when I saw this trailer, but the disability casting was a good sign all by itself.

I enjoyed the trailer, and I’m optimistic about the show, but I am worried about a few things.

First, I hope the show lasts long enough to explore disability themes beyond the basics. I mean, how much of a novelty is it, really, to show a non-verbal kid in a wheelchair … most likely disabled from birth … who has a real personality and sense of humor? That will probably be a revelation for most viewers, but once they process that, what’s next? It will be crucial for JJ to develop and change as a character. If he arrives fully formed but playing the same gag over and over, while everyone around him changes and grows because of him, then the show will just be spiffed-up formula, and boring as hell.

Second, I worry about how the show handles the depiction of the mother, specifically. Based on the trailer, she’s could wind up being a stereotype, albeit one that isn’t as well known outside disability circles. She’s the Special Needs Mother From Hell who fights so fiercely for her disabled kid that she alienates everyone around her and neglects the rest of her family. There is a bit of truth in the stereotype, but again, it’s almost a cliche already, and I hope they don’t make the main theme of the show. We love mothers,. (and fathers), who fight hard for their kids' rights, but there's a big risk that mainstream audiences will just find her obnoxious, and basically miss the point, unless there's some nuance to her. It's also a short trip even in real life from strong, effective advocate to self-absorbed mouthpiece who forgets who he or she is actually fighting for. I kind of want JJ’s mother to be mostly great, with only occasional relapses into counter-productive yelling.

Finally, I hope they bring in plenty of stories about things other than disability, and that other characters develop and grow outside of JJ’s influence. By the same token, I’d like to see JJ have interests and things going on that have nothing to do with his disability. It’s going to take a light touch to make this work, and that’s rare. Disability is usually ignored on TV completely, or else it’s obsessed over to the point of cliche and burnout. I hope that doesn’t happen to this show.

On the plus side, I love Minnie Driver, and I think her British accent might add just enough quirky other-ness to make her more of an individual than the role might otherwise dictate. I also like the fact that the two brothers, one disabled, the other not, really look like brothers. It also looks like the show will accurately depict the real-life practical and attitudinal barriers disabled people deal with all the time, like access ramps by the dumpsters and cutie-voiced, condescending “helpers.” And of course, the show has authenticity going for it. I hope Micah Fowler gets to have some influence over how disability is depicted on the show, beyond his playing the role.

I really want this thing to work. Either way, I’ll definitely review the Pilot this fall for the Disability.TV Podcast.

One more note: I wish the promo materials and media coverage of this new show would stop referring to JJ's disabilities as “Special Needs.” I hope the show itself doesn’t take that route. Better yet, I’d love it if they made fun of the term, since I am certain the school administrators will use it.

TV Pitch

If you had the chance to pitch an idea for a TV show featuring disablity, to a room full of production company executives and renowned directors, what kind of show would you suggest?

I was inspired to think about this by an episode of The Light Bulb, a podcast about storytelling and popular culture by Alaistair Stephens and Lani Diane Rich. In a recent episode, they challenged each other to come up with a TV show "pitch", choosing genres, selecting story tropes, and casting known actors. It was a lot of fun to listen to, and they seemed to have fun talking out their ideas. And since I am already very interested in how TV does disability, it seemed natural to start thinking about what kind of a TV show I would make.

Instead of answering that question myself though, I'm going to ask you, the reader, what your dream disability TV show would look like.

What's your pitch?

What kind of network would it be on ... a network like CBS, a premium cable network like HBO, public television, a streaming service like Netflix, or a web series on YouTube?

What genre would you choose ... police procedural, medical drama, sit-com, late night variety, family, sex / relationships, fantasy / supernatural, superhero, science fiction, political thriller, or action / adventure?

Would your disability show have stand-alone episodes following a set formula, or would it have long story arcs and deep character development?

What kind of tone would your show have ... accessible to a mass audience, quirky and innovative, sexy or raunchy, political, traditional, or artistically innovative?

And how would you use disabled characters and disability themes?

Would you include disabled main characters, secondary, minor characters, or extras? Would you focus on youth, teens, adults, or seniors?

Or, would you start small with a disability-themed episode of an existing show?

Share your pitches in the comments below. If there's enough interest, I might set up a SurveyMonkay survey where we can all pick our categories and characteristics to create a collective "ideal" disability TV show!

The Tyrion Test, Updated

Earlier today, someone unearthed and tweeted my old blog post about what I called the Tyrion Test, a disability version of the Bechtel Test. I named it the Tyrion Test after Tyrion Lannister from Game Of Thrones, one of the best disabled characters I have ever seen. After reviewing my version, I decided it’s time to try again, and offer a simpler test of disability depictions in popular culture, one that is a closer parallel with the original.

The Bechdel Test is a semi-famous “test” to evaluate how women are depicted in popular culture … TV shows, movies, books, and the like. To recap, a piece of culture “passes” the Bechtel Test if it:

1) Features at least two women, who
2) Talk to each other,
3) About something other than a man.

So, although I still endorse my original formula, I’d like to offer a simpler one:

A disability depiction passes the Tyrion Test if it:

1) Features two or more disabled characters, who
2) Talk to each other,
3) About something other than their disabilities.

I still think it also matters whether disabled characters have real agency, whether or not they are fully developed, and what kind of role they play in their stories. I also think it’s good when writers avoid leaning on a few tired disability tropes and stereotypes. But maybe this simpler test is enough. It's certainly easier to remember and apply.

What do you think? Are there other criteria you use to evaluate disabled characters and disability-based stories in popular culture? How do disabled characters in pop culture stand up to this test or others? Let me know in the comments!

Too Good Not To Share

I found this picture of a model kit of Ironside’s van when I was prepping for Episode 31 of the Disability.TV Podcast. It’s so random, but it’s also an indication of how much Ironside penetrated popular culture when it was on TV.  I wonder when peoples’ knowledge of disability from Ironside faded from popular consciousness.

Weekly Reading List: "The Mighty" Edition

This week's Weekly Reading List is devoted to the biggest thing happening in disability culture at the moment, #CrippingTheMighty.

Let’s Have a Conversation
Megan Griffo, The Mighty - December 22, 2015

“The Mighty” responds to criticism with a pretty standard, “Won’t you educate us?” that may or may not be an opening for sincere dialog.

#CrippingTheMighty: Our stories and labor have value
Alice Wong, Disability Visibility Project - December 26, 2015

A terrific hashtag that got me really fired up and produced a lot of practical advice to go with the anger.

The problems with The Mighty, and my suggestions for improvement
Carly Findlay - December 24, 2015

Carly hits the main points of contention in a way that suggests solutions, not just shame.

Two Ethical Futures For “The Mighty”
David Perry, How did we get into this mess? - December 22, 2015

David’s advice covers the ethical and business practices side of the controversy.

Cost of “our reality” posts
Sophie’s Trains, Respectfully Connected - January 3, 2015

An important exploration of one of the aspects of this controversy, the negative impact on disabled kids and adults when parents of disabled kids let their hair down and express how they really feel, in public.

I won’t apologize for writing about my daughter
Phoebe Holmes, Herding Cats - December 26, 2015

A parent objects, perhaps confusing criticism with censorship.

Ableism FUBARs and Constructive Recoveries
Shannon Des Roches Rosa, with Carol Greenburg, Patricia George, and Christine Langager, Thinking Person’s Guide To Autism - December 31, 2015

A respected site on autism sounds a cautionary note about what can happen when criticism gets rolling and people forget to dig deeper before condemning.

Speaking for my teen and adult children
Carrie Ann Lucas, Disability3 - January 2, 2016

An invaluable explanation on what it means … and doesn’t mean … for parents to advocate for their disabled children.

The Inspiration Porn Resolution
Alice Wong, Liz Jackson, and R. Larkin Taylor-Parker, Medium - January 3, 2016

A proposed pledge of sorts for people, especially parents and other non-disabled writers, who want to write publicly about disability.

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I haven’t commented much so far because I don’t want to repeat points other people have made if I can help it. Now that we are probably close to the tail end of this particular thing, I have a couple of thoughts to add:

The movement against “The Mighty” is, I think, more intense than it might otherwise be because the website’s critics don’t just disapprove of it, they dislike it. “The Mighty” is sentimental about disability, especially about disabled children, and a great many disabled people are instinctively repelled by sentimentality … grossed out in a fundamental, non-intellectual, subjective way that can’t be logically explained or refuted. I, for one, just plain don’t like most of what “The Mighty” publishes and the vibe it gives off. I don’t like “The Mighty” the way I don’t like brussels sprouts or paintings of big eyed children … which is to say that my feelings and reactions are in part matters of personal taste, quite apart from any ethical considerations. I dislike “The Mighty’s” dominant tone and approach the way smart, nerdy kids dislike being bullied by their peers, and held up as public models of virtue by a tactless teacher. For me, concerns like confidentiality, Inspiration Porn, and whether it’s ever okay to satirize traumatic experiences are valid, but almost beside the point. It’s yucky, and I think that’s one of the stronger forces driving the #CrippingTheMighty backlash.

I am pretty sure that another important factor here is jealousy. “The Mighty” has millions of dollars and apparently high-profile supporters to catapult it to prominence and social media saturation. Meanwhile, we disability bloggers grind away at our blogs and hope for a few modest paying gigs, while writing about disability in ways we honestly think are better for the disability community. Jealousy isn’t an admirable emotion, but sometimes it’s understandable. Someone had exactly the kind of opportunity all of us dream of … to establish a widely-read disability-based website that’s a force not just for good, but for progress … and instead they gave us slicked-up versions of the same old stories we’ve seen for decades ... teary, uplifting. and reassuring for non-disabled readers ... alienating and demoralizing for us ... updated with click-bait headlines and top notch SEO or whatever. Sorry. Like I said, it’s not a noble feeling, but nobody should be surprised. Though I think we in the disability community should own up to these feelings, along with our logical arguments and appeals to social justice.

If there truly is anyone at “The Mighty” who really wants to understand what happened, they should come to grips with the fact that the backlash against their product isn’t entirely irrational, wasn’t unpredictable, and in fact could have been predicted from the start. I don’t think it’s their responsibility to make their site the site we in the disability community crave, but it doesn’t have to rely as much as it does on tear-jerking and two-faced depictions of hero / burden disabled people. “The Mighty” might try letting more of us introduce ourselves to its readers as people instead.