It might be time for a new, or maybe a “reimagined,” disability etiquette.
With all the progress we have made on disability rights and inclusion, and with disabled people more visible and heard than ever before, offering another guide to “disability etiquette” seems almost quaint. But disabled and non-disabled people still mostly encounter each other in very ordinary, real-life situations. And those first interactions tend to hinge on simple etiquette, not on complex policy or Master’s-level cultural insight.
A quick review of the top five results in a Google search of “disability etiquette” reveals much that is still valid and relevant.
Here are the top three websites in a Google search of “disability etiquette” ...
Reading through them and all of their specifics, some common themes emerge right away:
- It’s important to recognize and respect bodily autonomy and personal privacy. Don’t touch or handle us without specific permission. And don’t claim intimacy that you don’t have by asking intrusive questions before we build an actual friendship.
- Specific needs aside, treat disabled people with the same respect and recognition you would give to any person. Speak to us directly, not to a third party next to us, our mom, dad, friend, or “caregiver.” Don’t avoid looking at or interacting with us. And obviously, don’t make tasteless jokes about our disabilities, or treat our needs and requests as some kind of unreasonable, inappropriate burden.
- Listen to individual disabled people, and always make our preferences in disability-related matters your top priority. Don’t behave as if you know better than us what we need or what is best for us. Even if you have a sincere set of beliefs about disability you see as right and progressive, don’t impose them on a disabled person who expresses a different view.
Overall, these are sound ideas that are as relevant today as they have been for decades. They speak to the everyday experiences of most people with any kind of disability. While we are all different, these etiquette guides do a pretty good job of addressing the social interaction problems we face most frequently.
However, the last twenty or so years have changed the focus and emphasis in disability culture, suggesting we need to rethink how we address disability etiquette.
For one thing, disabled people today increasingly expect to define their own views and preferences about disability, sometimes in contrast to longstanding practices laid out by past generations of disabled people and well-meaning but sometimes misdirected allies. We are more accepting of some ideas and behaviors than we used to be, and less so of others. The shifts haven’t been too dramatic or sudden, but the feel and tone of disability culture is noticeably different, and continues to evolve.
Meanwhile, disability culture and discourse thrives in online discussions and social media as it never has before. More disabled people have an accessible platform and a public voice, even compared to the heyday of the disability rights movement. But this has also exposed disabled people to a lot of unvarnished ableism from trolls, as well as overzealous argument and shaming from people who believe they have the answer to whatever disability-related problem is being discussed. The internet frees disabled people to express their true thoughts and feelings, but it also gives license and volume to inexplicable hostility, and to obnoxious proselytizers, few of whom are quite so pushy face to face.
These two broad developments are producing more specific changes in disability culture. For example:
- Disability language preferences and practices among disabled people are shifting.
Many people with disabilities still prefer “person first” language … saying “person with a disability.” But many others actually prefer “identity first” … saying “disabled person.” There are logical reasons for both, and they reflect two somewhat different ways of understanding your relationship with your disability. Is disability just a characteristic you happen to have? Or is it an integral part of who you are?
There is also a bit of a generational difference here. Older people with disabilities tend to be more comfortable with “person first,” which they probably learned, adopted, or even pioneered when they were young. Younger disabled people tend to view “person first” as out of date and a little timid, while “I am disabled” to them feels less like a negative label and more like a statement of pride.
- Disabled people are more outspoken about the emotional burden and social pressure placed on them to always be “ambassadors” for the disability community.
Traditionally, disabled people have learned, and to some extent taught themselves a model of living with disabilities that includes being resolutely cheerful, always willing to answer questions, and dedicated to fighting ignorance with information. The problem is that this becomes an expectation placed on all disabled people, rather than a conscious choice some may decide to make and others not. And if we deviate from that role, even just a little, just now and then, we are often scolded for giving the disability community a “bad name.” We are urged to feel guilty if any frustration or pushback from us makes a non-disabled person feel bad.
More communication among disabled people over time and through social media has made us feel more able to define our own boundaries and say, “No, actually I don’t accept the unpaid job of 24/7 disability ambassador.”
- More than ever before, disabled people are bombarded with unsolicited medical, emotional, or practical advice.
Not so long ago, one annoyances disabled people faced on a regular basis was evangelists randomly blessing us, or informing us, apropos of nothing, that their manifestation of God would heal us one day if only we had faith. Now, thanks partly to social media’s combination of anonymity and intimacy, it seems like traditional religion has been joined by other cure-alls, life hacks, and lifestyle ideologies. These days, our physical, emotional, and social justice complaints are just as likely to be answered by pitches for medical marijuana, diets, essential oils, yoga, mediation, or some finely-tuned approach to the right strategy or “tone” of activism.
While most of these “friendly tips” can probably be categorized as well meaning, they cross multiple personal boundaries, and also tend to carry reverse sides of judgment. If we don’t accept these recommendations, then we are obviously not doing life, or disability, correctly. The most galling implication is that those of us who live with disabilities all day, every day, many of us for decades, somehow haven’t ever taken the time to think of new or innovative ways to make our own lives better.
With all of this in mind, here is a suggested guide to a reimagined disability etiquette:
1. Don’t be afraid to notice, mention, or ask about a person’s disability when it’s relevant — but don’t go out of your way to bring it up if it’s not, and it most situations, it’s not.
2. Offer to help a disabled person if you want, but make sure to listen to their response, respect their answer, and follow their directions.
3. Don’t tell a disabled person about how they should think about or talk about their own disability.
4. Don’t give unsolicited medical, emotional, or practical advice to disabled people.
5. Don’t make a disabled person responsible for managing your feelings about their disability, or for your education on disability issues.
6. If you make a mistake, just say you’re sorry and move on. Don’t try to argue that you were right all along.
Like most guides to disability etiquette, this one carries no guarantee, and is not intended to be perfect for every disabled person. It is simply an overview of the most common ways that interactions with disabled people can go wrong in 2020, and how to avoid some unnecessary conflict.
Cover image credits: Getty Images
Culled from Forbes as written by Andrew Pulrang