Who Am I To Stop It is loud

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There’s some work coming out of Australia that I love and admire a lot. Comedian and activist Stella Young with her fine work and her eloquent challenge to finding disabled people inspiring comes immediately to mind. Despite some serious protesting, the ABC in Australia still dumped the Ramp Up website. Fortunately, this incredible repository of news and opinion from the disability community is still available online. They just don’t update it anymore. So it’s no longer current. Shame that, because disabled people haven’t gone away and still want and need a place where their experiences are more than just inspirational news bits on The Huffington Post or BuzzFeed.

While we’re talking about inspiration, let me bend your ear–yes, very painfully–for a few minutes longer. It seems that we have something going on in Australia that’s a little too inspiring to tolerate: The Chatterbox Challenge, designed to “help give disability a voice by not speaking.”

This campaign manages to tie in several horrific tropes and demeaning philosophies into one cutesy fundraising effort.

1. Disability simulation. Worse than your typical facilitated simulation, in this one you get to pick whether you will be “voiceless” for a whole day or even a minute. Shwew. Not too inconvenient to participate! It’s not like you have to go change out of your cold clothes and dry your hair after having a bucket of ice water dumped on your head! According to the campaign, still “you will experience, in some small way, what it’s like to live with a disability by not having a voice.” Oh dear, oh dear, oh dear.

Here we are looking at disability as ONLY a flaw, deficit, weakness, shortcoming, what-have-you. This is the heart and soul of the medical model of disability, one that leads to the silencing of disabled people. (Can you find the subtle difference between someone being silenced and someone being voiceless?) Zipping your trap for a minute or a day will, indeed, give your vocal cords a rest. But how is that like having a disability? After all, you can still write, tweet, text, message, type, gesture, and when you’re done “experiencing disability” you can just give it up and talk again. And your small neck muscles will have had some time to relax. That’s nice.

Will some people cower from the sight of you? Will other people approach you and ask nothing besides “What’s wrong with you? How did it happen? How long have you been like this? Can I pray for you?” No. They’ll think it’s swell that you’re raising money for charity, and for that you will be praised. For people like me with a genuine voice disorder and people like Georgia Weber with a genuine voice disorder, people do not comment how swell we are when we choose to be silent because our vocal cords are extra ouchy and swollen some given day and need the break. They ask if we’re contagious. Often, they leave as quickly as possible as if holding a conversation where they speak and we write is detestable. Thank you kindly. Now we feel detestable. Are we detestable–or as Georgia points out, dumb–because we can’t speak? No.

2. Chatterbox’s claim that “actions speak louder than words” confuses me. The actions? Zipping your trap, encouraging others to zip their traps, and/or donating to a charity. By the by, I looked up the charity sponsors online. They look like they have incredible, thoughtful, coordinated services. What they don’t look like is that they value having disabled people at the highest levels of the organization. Though they describe the value of the social inclusion they work for, it seems that they feel inclusion can be achieved outside their organizations, not within. This is so common. I don’t know much at all about Physical Disability Australia (not involved with Chatterbox), just like I don’t directly know about the charity organizations that are participating. But I know this about PDA: One of their stated purposes is “[t]o include within all our operations the active promotion of the rights, responsibilities, issues and participation of people with a physical disability.” And they are “governed by a Board of Directors with lived experience of having a physical disability.” I would research a non-profit before donating to it. As someone in the disability community, I would research this one first precisely because of their inclusion of disabled people at high, decision-making levels. That is a model of empowerment and inclusion.

3. This utterly bizarre quotation from one of the Chatterbox Challengers, retired athlete Warwick Capper: “All funds raised by the annual Chatterbox Challenge are dedicated to supporting and empowering people living with disability….The Chatterbox Challenge provides a voice for them.”

I’m sorry, but you cannot empower people by providing a voice for them. Empowerment comes from disabled people speaking for themselves. Oh, and while I’m on that note, speech, voice, oral language, these things are not the only ways to communicate effectively. Likewise, oral language isn’t always effective. By equating voice with empowerment and lack of voice with disability and a need for someone else to empower you, we are excluding the rich and wonderful world of written language, signed language, communication through AAC devices, communication in other distinct, beautiful, and meaningful ways. For instance, this lovely video created to explain communication and existence in the world from Amanda Baggs. This is someone displaying empowerment and communicating her “voice” to us. If I decide to be quiet for one day and then give some cash to a charity, how on earth did that help anyone understand Amanda’s view on the value of neurodiversity? It didn’t.

I’m bone tired of people looking at a person with high access needs and perceiving them as in desperate need for someone else to speak for them. At times when I had to be on voice rest, or at times when my brain injury made me too confused to keep up in a conversation, I have deliberately asked my partner to speak for me on specific topics that I know he understands about me. That was me asking him to provide me access in that way. This is different. This is an entire philosophy that people who need accommodations for access need charity as well. Worse than that, is that people who need accommodations (because we don’t use Universal Design by default), are, as an entire group, considered voiceless and powerless without our altruistic help.

4. The campaign videos? They lack Closed Captions. That’s right, Deaf, deaf, and Hard-of-Hearing people? Good luck accessing the videos! One had music turned up so loudly that I had huge difficulty concentrating on the words being spoken. Some Hard-of-Hearing people may be able to hear the music and hear the words but not separate them out either. Why are you making such inaccessible campaign videos to give people with disabilities a voice? I guess only some people with some disabilities are invited to watch and participate. Or maybe some Good Samaritan can recap the videos for the less fortunate among us who are too impaired to watch videos by themselves. (That was sarcasm.) In one of the videos you see someone rip a Chatterbox face mask off with a huge grin and people clapping to signal the end of her silent day. A voice bubble appears saying that going a day without talking was hard! Ouch! That was hard! Good for you. Words come up on the screen (with no voice over so that blind people and people with visual impairments will have no access to them) that his person felt proud of herself for raising “dollars for disability.”

There are many pieces of systemic ableism and oppression that keep a lot of disabled people in poverty, such as marriage penalties, inability to save money and assets if you receive SSI, and housing and employment discrimination. Oh well. Let’s just raise some cash to make people’s lives better in a way that we can publicly demand praise for our charity. Please.

This campaign is not all doom and gloom, inspirational treacle, and lifting your spirits through the power of donating. The #heardwhilstdisabled campaign is a place for people in the disability community to share photos of themselves holding up signs with hideous, confrontational, microaggressive statements they receive or have witnessed. Read about that on the Daily Mail Online. This article mentions that for some disabled people, their biggest challenge in life is in others’ reactions to them. Sadly, this article doesn’t really unpack the oppression feeding the statements. The author even hints that some of these comments are “stupid.” This reinforces two ableist problems:

1. If you don’t agree with something, call it stupid and draw an association to people who you think don’t have adequate intelligence and therefore don’t have adequate value.

2. Call something stupid, and then you don’t have to talk about ableism. It’s easier. I saw people do that with Kanye West. Yes, maybe he’s a jack-ass, but if that’s all you want to say about him, you are neglecting to accept that ableism is real and that he perpetrated it glaringly.

If you want to buy some products or services, find a disabled person who offers them, like on OutofStep.com. Donate to organizations such as Disability Art and Culture Project, an organization with disabled artists working at the highest levels of operation for the company. If you feel like you want to donate some money to someone or some group that does true liberation and empowerment work, but you don’t know how to find them in your area, drop me a line. I’ll work with you to find an organization that makes the space for people to use their own voices in their own way, not one that serves people while simultaneously viewing them as too incapable to speak for themselves.

And better yet? Hang out with us as friends, colleagues. Go to a show. Take a stroll. Have a meal.  Find out if there’s some campaign we’re working on, and see if you can support us as an ally. Find out first if that’s what we want, and then offer your talents, money, skills, outreach, etc. in ways that we feel will help our campaigns whether you will get public praise for your efforts or not.