Demystifying Disability: What to Know, What to Say, and How to Be an Ally

by Emily Ladau

Dominick Evans, who tweeted: “I don’t personally like dismissing people for being ableist. It’s embedded in our culture, and I had to learn to be better, so how can I expect nondisabled people to know how to be better? What gets me is when people learn the harm they’ve caused, and double down about it.”

When disabled people can fully use and experience a product or service, that’s accessibility.

When disabled people can occupy and move about a space freely, that’s accessibility.

when accommodations are provided to ensure that both of these things are possible for disabled p...

Here’s how I explain it. Imagine your friends are talking nonstop about a trendy new place in the neighborhood that they want to try. The catch? There’s a password to get in. You all head out for the evening and when you get to the door, your friends simply give the password and are granted access. But when you reach the door, you’re told that the password you gave was wrong. Everyone else can enjoy the experience uninhibited. But you? Access denied. Imagine a slightly different scenario. The password worked for the front door; but once you got inside, you found out that there was a second password for the bathroom and no one would give it to you. Can you really be comfortable enjoying an evening out at the trendy new place if you can’t use the bathroom there? What if this same scenario kept happening to you at different places because no one could be bothered to share the passwords?

that’s often the reality of being disabled. We’re shut out or excluded because the world is not designed for us.

Accessibility is about making things more equitable so that disabled people have the same opportunities and support to thrive as do nondisabled people. It’s about removing barriers to participation, engagement, and understanding so that all people, regardless of ability, can experience the world around us to the fullest extent possible in ways that work for our minds and bodies. Accessibility is not about special treatment or privileges.

It’s difficult not to feel as though I’m the burden when I encounter inaccessibility.

Of course disabled people want to be treated like everyone else, but when we say that, we don’t mean “treat every person exactly the same.” We mean “recognize our humanity and meet us where we’re at.” — Kyle Khachadurian,

Really, proper disability etiquette comes down to one simple piece of timeless wisdom: the Golden Rule. Treat others as you want to be treated.

Disability etiquette isn’t about tiptoeing around us and treating us like strange, delicate flowers. (In fact, that’s pretty ableist in and of itself.) It’s about treating us like full and equal human beings.

Curiosity may be part of human nature, but please remember that you’re not entitled to information just because someone is disabled, especially if you don’t have any level of familiarity with that person.

If you wouldn’t ask a nondisabled person the same question in the same context, don’t ask a disabled person.

My advice? Whether you identify as disabled or not, if you have a legitimate suggestion and want to share it with another disabled person, prefacing it with something like “Can I share with you what worked for me?” makes a big difference in how it comes across. And if the person says no thanks, leave it at that.

There are also plenty of instances in which the best etiquette is to ask, rather than to avoid, disability-related questions. When you’re planning an event, meeting, or outing, it should be standard practice to ask about accessibility needs, even if you’re not sure whether other people involved identify as disabled. If you have a certain level of familiarity with the people you’re communicating with, the ask can be informal (“Hey, do you/does anyone have any accessibility needs to participate? Let me know how I can support you!”). If you’re engaging with someone you don’t really know or have a more formal relationship, it can help to add a little more context to what you’re asking (“I want to make sure what I’m planning works for you. Is there anything I can do or any accommodations you might need to make this accessible so you can fully participate?”).

If you’re unsure how to broach the question, it can help to preface it with something like, “Is it okay if I ask a question about your disability?” or “I’m wondering about [insert whatever you’re wondering about]. Would you be up for talking about it?”

Give people an option to be comfortable instead of forcing them to go along with social norms.

Communicate with a disabled person as you would with anyone else. To start, in every circumstance, please talk directly to people with disabilities. If you have something to say to a visibly disabled person who’s accompanied by someone else, there’s no need to say it to the other person or talk as though the disabled person isn’t there.

Presuming competence is the idea that, regardless of these things, we are fully human with the same rights as everyone else and, with the right support, we can express ourselves, participate in our communities, and make our own decisions.”

Everyone deserves to be treated with dignity and respect, simply because they are human.

You know what’s actually pretty rude, though? Foisting help on a person without first asking whether they need it, or what they do need.

Don’t escalate your offers of help to this point. Remember, disabled people are the experts on what they need.

helping a person in crisis doesn’t mean stepping in and trying to fix things in a way that you assume is correct. Instead, they advise, “Ask the person what they need in that moment, or how you can support them. And if the person is not able to articulate that, then you can offer some suggestions.

Skip the assumptions and instead focus on incorporating disability etiquette, and prioritizing accessibility, into all your interactions.

People sharing their experiences shouldn’t have to make you feel better about their experiences.

But based on experience, here’s the best advice I’ve got: Please don’t scold or shush a child for being rude. I get that this can be an instinct based on a parenting or caregiving style, but I believe these responses to a child’s questions stem from the adult’s shame or embarrassment around disability. If it’s clear that the disabled person your kid is curious about isn’t comfortable engaging, the next best thing is to respond instead of ignoring the question or yelling.

“I’m sure you didn’t have any bad intentions here, but I just wanted to let you know that [word or phrase the person said] was actually pretty discriminatory toward disabled people, and that’s not okay. If you meant [non-ableist alternative], why not just say that next time?” This approach is gentle enough that it generally doesn’t put people on the defensive but firm enough that they get the point.

My best advice is to (1) take cues from the person experiencing the ableism, and (2) assess whether you actually have something helpful to contribute. For instance, before inserting yourself into a conversation thread on social media, consider if you’re adding fuel to an ableism fire by jumping on a call-out bandwagon, or if you have a comment to add that might genuinely help put the fire out.

many people are convinced that disability is an internal barrier that can be overcome if one only tries hard enough. There’s a lack of recognition that the adversity disabled people experience has nothing to do with needing to try harder or adjusting our attitudes to be more positive. Rather, it stems from the belief that disability is some kind of personal failing.

A video of a paralyzed person getting out of a wheelchair for the first dance at their wedding reception will melt people into a puddle. A video of a person with Down syndrome getting a high school diploma brings tears to people’s eyes. Why? Because of a deeply held stigmatizing belief that disability holds people back from a full life.

But the trouble with these kinds of stories is that they wouldn’t be newsworthy at all if a disabled person wasn’t the subject, and if we didn’t live in a world so consumed by the ableist idea that if disabled people achieve anything, it can only be in spite of our disabilities.

The media constantly perpetuates this idea of superhuman versus subhuman, and it’s a total confidence drain for disabled people.

But, really, wouldn’t you feel better if the world we lived in was inclusive? If simply being nice to a disabled person (who should be treated as a person like anyone else) wasn’t considered newsworthy? If loving someone disabled wasn’t seen as heroic? (Because it isn’t!)

Such acts of kindness are perceived as an act of charity toward the poor disabled person who the world believes just needed someone to be nice to them. When moments such as these are celebrated as human-interest fodder or used to try to guilt people into being nicer, it really isn’t kindness anymore.

So when you come across media that involves a disabled person, instead of falling for the trap, pause for a moment and ask yourself Is this a positive representation of disability that humanizes disabled people, or does this media just use disability to play to emotions? Am I inspired because someone with a disability actually did something truly inspiring, or does this feeling stem from ableist ideas about disabled people?

Spoiler alert: Rather than continue to live and adapt to life as a disabled man, Will chooses assisted suicide. The message? Disability is a fate worse than death. Sadly, the millions of fans of the book and movie don’t see it this way. They see a love story in which Will is noble for choosing death to free Louisa from being trapped in a future with him, and they see those who critique the exploitation of disability as a tragic plot device as bitter cynics. We’re not bitter, though; we just have the audacity to believe that disabled lives are worth living.