Some of the most painful situations new activists get into revolve around stories. What seems like the chance to do good can end in embarrassment Even if the portrayal, the content or media that comes out of sharing a story, is ultimately respectful, third parties may still project their own prejudices on it. Personal stories told in dignified ways can be used in undignified ways. There is also the storytelling trap: it can feel more useful than it actually is. This isn’t to say that personal stories should never be told, but it’s important to be aware of the pitfalls of personal storytelling and how to avoid them.
The obvious risk of storytelling is that the Autistic person who has shared a personal story won’t be heard with respect. It’s the humiliation that comes of being treated as a self-narrating zoo exhibit on display to satisfy allistic curiosity, as something less than human. This problem is prevalent at lower-quality autism conferences. Speakers who are new to advocacy, especially those who are very young, don’t always anticipate the extremely personal questions, condescension, and celebrations of indistinguishability which are sometimes part of those events.
The experience of showing up, trying to contribute, and being put on display instead of encouraged to participate is painful. It has a way of bringing up bad memories of brushes with ableism. This can be particularly distressing for newer advocates who may not have encountered it before. Encouraged to stay positive, newer activists may suffer in silence for years feeling as if something isn’t right and not knowing they have other options than only saying what the allistic people in charge want to hear.
It is often possible for advocates to avoid situations where everyone wants them to speak and no one wants them to have thoughtful opinions. Researching a conference or publication before agreeing to speak, write, or be interviewed is a way to get valuable information about how a narrative is likely to be treated. Asking, in advance, about the discussion topics often reveals how much room for opinion and expression you will really have. In the event of an interview, consider looking into both the reporter’s previous work on autism and overall reputation, especially whether past interview subjects feel that they were accurately portrayed.
There is also the danger of being co-opted in other ways. Even a story you tell in a respectful environment, to respectful listeners, can be misused. Someone can hear a serious thing through the lens of prejudice or infantilization. Because of the impossibility of controlling strangers’ behavior, this isn’t always avoidable. The story you tell with all the dignity you can muster may not always be heard that way. If you decide to tell personal stories which even mention your disability, all you can do to prepare for this problem is awareness. Know that it may happen, and know that the indignities others inflict on you don’t diminish your dignity as a human being.
There is also a more insidious problem with storytelling: you could be accomplishing less than you think. If you tell stories because you are genuinely trying improve conditions for Autistic people or others with disabilities, it is important to be attentive to where you are talking, who your audience is. Telling your story to state legislators in hopes of influencing how they vote on a particular bill might improve the law in your state. Giving advice or instruction on a disability-related subject you know well might make someone more informed. Illustrating that advice with examples from your own experience might make your message easier for some people to understand. Telling the same feel-good story year after year may feel like taking action, but it may keep your listeners comfortably in the realm of what they want to hear. This leaves you stuck like a protester herded into a pen a half-mile from the intended site of the demonstration, expending energy to express something without getting anywhere. In personal storytelling, the sense of recognition, the rush of standing in front of a room, and, sometimes, the pay can make it hard to take a realistic look at whether anything is happening.
The way to address this problem is to think through your content and audience. If you’re challenging what people think instead of telling them what they want to hear, you may do some good. If your audience has the power to change things, what you say is more likely, as a practical matter, to accomplish something. Your odds of contributing something meaningful will rise if you can gain expertise beyond your individual experience. If you’re describing problems or solutions you think may have affected other people, consider learning about the bigger picture.
Only you can decide when you should and should not share your story. The best way to make that decision is to to take a careful, honest look at the specific circumstances. What are you likely to accomplish? How likely is it? Balance the good you think you could do against any cost to your time, money, and well-being because those things matter. Telling personal stories can contribute to the conversation about how to make things better for Autistics and others with disabilities. This is probably most true where those stories come from Autistic people whose stories disproportionately go unheard.
However, telling personal stories comes with risks and challenges, particularly the possibilities of feeling embarrassed or dehumanized, talking a lot without accomplishing much, or both. Newer advocates, who should learn these things from advice, too often find out about the pitfalls of personal stories through experience, but awareness of the drawbacks and risks is key to decisions about when stories are worth telling.