Is It Okay To Ask Disabled People About Their Disabilities?

This past September 2023, the United Kingdom government’s Disability Unit launched an awareness campaign titled #AskDon’tAssume.

It is aimed mainly at non-disabled people, urging them not to make assumptions about any disabled person’s capabilities or needs, but instead to ask them.

“To be a true ally it’s important to listen to disabled people, to ask them what they want or need, and what they are capable of – not assume that we already know,” reads the campaign’s website. The effort is also presented as an authentic collaboration between government and people with disabilities themselves, “… developed in partnership with disabled people, based on their individual experiences, extensive research and work with disability stakeholders.”

Many disabled people in the U.K. and worldwide first learned about it when they ran across the #AskDontAssume hashtag. The response, at least from much of disability social media, was probably not what the campaign’s planners expected.

The gulf between the campaign’s stated goal and the backlash against it from disabled people suggests many things, including poor social media strategy and possibly an overly insular and idealistic view of disability awareness. But the episode also highlights an apparent contradiction in disability culture.

As disabled people, we prefer people to ask us before acting on whatever they think they know about us or our disabilities. We would rather they talk with us and listen to what we say than just assume a bunch of ableist misconceptions and nonsense about disability and what it means for any particular disabled person.

But we absolutely hate it when strangers and casual acquaintances ask us intrusive questions about our disabilities, especially when they seem like they just want to satisfy their own curiosity.

The contradiction stands out whenever the subject of disability etiquette comes up; it caught fire when a government campaign threw gasoline on it. But it’s only a contradiction on the surface. Disabled people’s feelings about appropriate communication are entirely consistent. We want to have a voice in explaining ourselves and shaping ideas about disabled people in general. We definitely don’t want to rely solely on friends, family, or disability professionals speaking for us. And we don’t want bad ideas about disability to go unchallenged, especially when they can be easily corrected.

But at the same time we don’t consent to be full-time disability awareness professionals, on call 24/7 to educate people on disability issues. Some of us do make a conscious decision to be disability advocates, activists, or educators. But many, probably most of us have other priorities. And “raising awareness” about disability is a physically and emotionally exhausting path to take. It’s not for everyone. It’s a calling, not an obligation.

Even those of us who do choose to share our experiences and viewpoints don’t want to do it every time, on demand. And we aren’t all equally comfortable talking about every detail of living with our disabilities.

There is also a big difference between discussing disability issues and talking about our personal pains, humiliations, exclusions, and traumas. Talking abut accessibility, discrimination, and the pros and cons of disability policy is one thing. Sharing how much we hurt, how we go to the bathroom, whether, (and how), we have sex, and what it feels like to be bullied is quite another matter.

This is a duality disabled people live with every day. And it is represented by two important phrases in disability culture. One is, “Nothing about us without us,” a slogan used by many marginalized groups, but notably attributed to disability rights activists in South Africa, as documented by author James I. Charlton. Yes, please do consult us, and listen to us, on matters that most intimately affect us.

But another concept worth keeping in mind is, “self-narrating zoo exhibits,” a phrase coined by autistic activist Jim Sinclair. Please, don’t treat us like curiosities, or insist that we share our experiences with you, even if the purpose is to make you more accepting and respectful of disabled people.

The U.K. awareness campaign’s goal may in fact be to encourage people to ask questions before diving in with inappropriate or unwelcomed help, or before closing off an opportunity based on ableist assumptions. If so, that would be a good thing. But it comes across like an open invitation for anyone to ask whatever they want, of any disabled person. It feels like an official license to be rude and intrusive to people with disabilities.

So how should you balance the need to know more with the importance of respecting disabled people’s privacy, time, and emotional labor? Before you ask a disabled person, you might try asking yourself yourself some key questions:

• Do I need to know? Or, do I just really want to know? Am I motivated by a need for practical guidance, or just morbid curiosity?
• Is this someone I have a close, strong relationship with? Or, is it basically a stranger or casual acquaintance? What’s appropriate for a close relative or friend to ask a disabled person about is often different from what is acceptable from a next door neighbor, sales clerk, or random stranger on the sidewalk or transit bus.
• Is this an appropriate time and place to ask potentially difficult questions? Is it a public or private setting? Is the situation personal or professional?
• Does this person seem like someone who likes explaining their disabilities and talking about disability issues, or not? When you do know a disabled person somewhat, it should be obvious whether or not they like sharing details of their disabilities. In short, learn to read the room, and your audience.

With the @AskDontAssume campaign there is clearly a mismatch of messages. But it’s much more than a mere misunderstanding or glitch in communication. It also reflects the fact that different groups of disabled people experience very different forms of ableism.

Some people are too uptight and reticent. They would rather carry on, awkwardly and unhelpfully, with ableist misconceptions rather than take the chance of just asking disabled people for their perspectives. They are the ones who may need some encouragement to “ask, don’t assume.”

But there is another type of person that many disabled people encounter far more often – people who feel too free, entitled even, to ask the most intrusive questions of any disabled person. They need to hear a different message, about thinking before speaking, respecting disabled people’s boundaries, and restraining their burning curiosity.

The whole incident suggests that in crafting disability awareness campaigns, it’s not enough to have bare bones disabled representation. Disabled representation itself must as much as possible reflect the widely varied perspectives of disabled people themselves.