Disability 101: Inclusive Language
Karen Reilly is our new accessibility consultant and will be working on improving our online entities, as well as creating educational materials on accessibility for the broader digital rights and Internet Freedom Community.
If you’re new to talking about disability, there are a few things to know. There are a lot of terms to learn, and lots of ways people talk, write, and sign about their experiences. It can be overwhelming. The good news is that a lot of what you know about etiquette applies. If you keep a few additional things in mind, it gets easier:
Take the lead from people with a disability or other difference.
Don’t assume things about people.
Offer the same respect for boundaries you would give to anyone else.
Take feedback.
Nothing About Us Without Us
First, listen to disabled people. It’s important to recognize that disability activists have had to fight for autonomy in a lot of contexts, from the right to determine one’s own medical care, to have access to education that fit’s one’s interests, and to live independently. Language matters. It’s frustrating to be told how to talk about your own life.
The way I talk about my disability is not the way someone else would choose to communicate about their experiences. Take person-first language, for example. Some people prefer “I am a person with a disability”. This is person-first language.
The reasoning is that you’re focusing on the person, not their differences. It’s also a way to avoid judgemental terms like “suffering from” or “victim of” that may not describe the experience of someone with a disability.
I prefer “I am disabled”. To me, disability is a part of my identity. In fact, if I had identified this way earlier, I may have had access to information and a community that would have helped me fight for my rights. So follow the lead of the people you talk to. If you use a term that someone doesn’t prefer, just switch to the one they suggest.
Some terms are outdated. You may mean well, but they make it clear you haven’t engaged with disability activists in a while. Years ago, “Handicapped” was an improvement over “crippled”, but “disabled” or “person with a disability” are up-to-date. Some ways of referring to disability are meant to be kind, but aren’t. “Physically challenged”, “special needs”, or “differently abled” are euphemisms. They’re based on the assumption that disability is so bad it can’t be referred to by name. Saying that someone has “special needs” frames accessibility as special treatment instead of equal access. Saying that someone is “wheelchair bound” ignores the fact that wheelchair users gain movement with mobility aids.
Check Your Assumptions: Differences Aren’t Always Disabilities
Some differences aren’t always disabilities. Some ways of being are just different. They aren’t inherently better or worse. Difficulties because of differences are rooted in barriers put up by society, not in the abilities of an individual.
Neurodiversity is one example. Being autistic, having sensory issues, having ADHD, or any number of differences are not disabilities in all environments. People who are Deaf with a capital “D” who use sign language are part of a culture. Since these discussions are still going on in communities and personal preferences may differ, following the lead of the person you’re talking to is a good habit to get into.
Don’t assign your own values to someone’s experience of disability. My life isn’t ruined. It is different. It can be difficult. It doesn’t make me someone else’s inspiration. It hasn’t given me extraordinary abilities in some other way. Someone with the same chronic illness will feel different.
Don’t assume things about people with disabilities. Someone may communicate differently or be using a mobility device like a wheelchair, but that doesn’t mean they can’t understand you. Address the person in front of you. Don’t assume someone with a disability that affects speech or movement is drunk. Be observant, be patient, and ask questions if you need to. That being said, it’s important to respect boundaries.
Boundaries: Don’t Be Intrusive, Seek Consent
A person with a disability has the same rights to privacy and boundaries as anyone else. Let someone offer information instead of asking intrusive questions about someone’s medical care or private life.
Don’t touch someone without their permission. Consent extends to their mobility devices. Treat someone’s cane, wheelchair, or other mobility aid as an extension of their body.
If someone looks like they need help, ask first. Disabled people don’t like being grabbed by strangers any more than you do! Even well-intentioned people can injure people with disabilities. For example, my wrists are fragile. It’s safer for me to get up by myself even if I fall then it is for someone to grab my hand and pull up. If I do need help, it’s important for someone to ask how to do so without hurting me.
Don’t offer unsolicited advice. There are a few problems with this.
It assumes that people have some control or even blame for a medical aspect of their disability.
If you wouldn’t usually talk about medical history with someone you just met, keep on doing that.
It doesn’t respect that disabled or chronically ill people know their own bodies and minds. This is a struggle that we have when accessing healthcare, even with specialists. The assumption that lived experience has no value can lead to denied healthcare, medical trauma, and aggravation.
Chances are, the person you’re talking to has heard the same advice many, many times before.
One common bit of advice is to take yoga classes. There’s no amount of yoga that would have prevented my disability, and my disability even prevents me from participating in most yoga classes. That being said, if you would invite non-disabled friends to yoga, feel free to do the same for your disabled friends!
Keep learning
Take feedback. If someone prefers a different term, enforces their own boundaries, or tells you something isn’t accessible, don’t get defensive. Take the opportunity to learn. There are so many experiences of disability that you can’t be expected to understand them all right away. If you acknowledge the value of lived experiences, adapt your language, and treat people with the same respect, you’ll be fine!
This is part of our accessibility in digital rights and Internet freedom series. Check out past accessibility articles.