The views expressed here are for the author and do not represent any agency or organization.
For people with disabilities, talking about our disabilities is complicated.
Sometimes, when people ask their perennial questions, or just look at us in a certain way, we can almost hear them say it:
“Go on! Do that thing you do, where you remind me how my own little problems aren’t so bad. Do that ‘inspiration’ thing that makes me feel better about myself for admiring you.”
What does it mean when a wheelchair user speaks at a political convention? What does it mean when a blind person gives a motivational speech, when an amputee engages students or employees on “disability awareness?” What does it mean when any disabled person, in the ordinary course of their day, is asked to explain their disability, or tell their disability “story?” And what does it mean when the disabled person tells their story? And what does it mean when they say, “No, not today. Not here. Not for you. I’m not here to be your inspiration.”
From a non-disabled point of view, it must sometimes seem like we disabled people can’t make up our minds. That’s because the whole subject is fraught with conflicting choices, each with pluses, minuses, and even moral implications.
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Do we raise awareness, or mind our own business? Do we welcome questions from the curious, or draw clear boundaries to guard our privacy. If we want a better world for disabled people, what is our own obligation to further that goal? Will we share our most profound experiences and thoughts about disability, and for what purpose — or whose?
Some of us are quite anxious to tell our stories to anyone who will listen. It can make us feel less alone with our burdens and traumas. Some of us draw strength and purpose from telling our stories of triumph over adversity, dispelling myths about disability, or advocating for better disability policies and political power for disabled people. Despite popular rhetoric about “not letting disability define us,” a great many of disabled people do organize much of our lives around our disability experiences and identity, and we do it intentionally, joyfully.
At the same time, disabled people have mixed feelings about sharing our experiences with others. We all have different ideas about the pros and cons of sharing our stories, raising awareness, and “educating” non-disabled people about disability. And what we think about it can change from day to day, from person to person, and situation to situation.
To understand how disabled people struggle with these questions of sharing, educating, advocating, you need to explore some of the positives and negatives we juggle every day.
First, some disabled people find sharing their disability stories therapeutic. Many who were disabled later in life need to tell how they became disabled. And talking about our disabilities and everyday struggles with ableism can help all of us clarify how we feel about our disabilities.
While few of us like to admit it, many of us do in fact crave sympathy or at least empathy. Getting a positive, supportive response to our disability stories can be validating. It can, at least in the short term, compensate for some of the negativity and unvarnished prejudice we encounter regularly. And genuine empathy can actually make our lives easier by reducing misunderstandings and judgment.
There is also the practical benefit, or necessity, of sharing something about our disabilities in order to get help and accommodations that we need to survive, and that can help level the playing field for our ambitions. Having to reveal private information in order to obtain equal opportunity is a constant burr in our sides. But it is the most consistently beneficial payoff for this awkward exchange.
Finally, some of us choose to embrace being spokespeople of sorts for the disability community, and the cause of disability rights and justice. Some disabled people commit themselves to advocacy, motivational speaking, writing, and educating the public … all of which call for some degree or another of personal sharing. These commitments can give purpose to a disabled person’s life, if purpose is missing or uncertain. It can give meaning to a person’s disability, if meaning is important to them. For some of us, it’s also a living, and a potentially useful one.
The benefits available to disabled people for sharing our stories, experiences, and feelings are fairly familiar. It’s the negatives people tend to forget, but that are constantly on disabled people’s minds, precisely because they are so common and cut so deep so often.
For a start, constantly retelling our disability stories can be a seductive trap. We tell it again and again, sometimes on request, or else in search of some resolution that never comes. We stagnate or worse, spiral further into depression and trauma. Also, other people’s curiosity about disability and disabled people’s stories tends to have a very short shelf-life. While they start out craving answers and compelling narratives, most people quickly get sick of them, especially if they fail to fascinate or uplift. Regardless, fixation on our own personal stories also makes it less likely that we will discover the broader disability community and disability issues, and that is a real loss.
Another problem is that many of us quickly come to realize how easily the visibility we craved for so long, and we finally seem to be getting, can be misused, no matter how carefully we craft our messages. As any disabled person who has addressed a political audience can attest, you never know just how much of your specific message gets through, and how much is drowned in a sea of sentimental responses to our very presence. Do audiences come away with a new understanding of health care, or home care, or accessibility? Or do they leave uplifted or amazed at how articulate the disabled speaker was, and how brave?
The most important thing to remember, but so many people miss, is that sharing our stories and educating people about disability always costs us something. The novelty of attention and praise eventually wears off, and you find yourself giving and giving, with little in return. Even if you are being paid … and far too many disabled public figures aren’t paid for what they give … sharing yourself, your passion, and your hopes with strangers takes a toll. And even the best audiences have little ability to give back.
Yet, disabled people are often expected to share our stories and enlighten others on disability matters … as if it’s our unique duty and special mission in life as people with disabilities. A calling is a personal choice. A duty is more of an imposition. A lot of people don’t understand the difference. On the personal level, friendly curiosity about our disabilities can quickly turn to sour resentment when we don’t immediately satisfy it. And demanding to be “educated” is often used as a “put up or shut up” answer to being called out for accessibility failures or other kinds of ableism. If we don’t agree to open ourselves up at all times and give free education, then ongoing ableism is implied to be our fault.
So, when is it okay, and when is it inappropriate to ask disabled people for their stories, or for help on disability issues?
Obviously, it depends partly on what kind of relationship you have with the disabled person. It’s rarely if ever appropriate to ask a disabled person you don’t know to tell their story, or explain intricacies of the disability experience to you. Asking a coworker or casual acquaintance may be alright, if you do it with care and listen for signs of receptiveness or reticence. You can deepen your relationship with family or close friends with disabilities, by inviting them to share deeper experiences and feelings. But this kind of closeness should never be mistaken for open-ended permission. Having a family or professional connection to disability isn’t a special permit to pry. Neither is having a disability yourself. A disabled person may trust you more if you’re disabled too,, but your disability status doesn’t guarantee access.
It also depends on the time and setting. Certain subjects and avenues of conversation are appropriate in some places and occasions, out of place in others, and totally bizarre or even creepy in still others. Think of how doctors and lawyers feel when people at cocktail parties ask them for medical or legal advice. It’s often like that for disabled people. We feel like everyone’s public encyclopedia of all things disability. No place is taboo, no subject off limits. At any moment, we can be prayed over in the frozen foods aisle, asked in a coffee shop how we have sex, or grilled in the lunchroom on which disability terminology we use.
If you want to engage with disabled people, and learn about disability issues and culture, that’s great! Please do both. But remember that each disabled person is an individual, and we each make our own decisions, using our own criteria, for when and how we want to share, explain, and educate others, from perfect strangers to those closest to us.
In the end, sorting the good from the bad, the appropriate from the burdensome, isn’t that complicated after all. It’s a bit like intimacy and consent. Talking about disability with disabled people can be enormously rewarding for both parties, but only when the disabled person is a willing participant. While some of us consciously choose to be as open and forthcoming as possible, none of us feels that way all of the time.
Above all, no disabled person should ever feel obligated to share, or shamed for not sharing. this is also my school of philosophy . as a Public policy diversity and inclusion expert I celebrate diversity in full.