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One thing I love about the Invisible Disability Project is their belief in the idea that each person and each community ought to be able to define themselves no matter their age, gender, disability, class, ethnicity, or anything else about them. IDP is a grassroots movement of social projects. One of their many aims is to point out that in lots of cases it’s not that a person has an invisible disability; it’s that society makes certain people invisible when people make things inaccessible, they’re invalidating, and they say that you have to look, move, think, or communicate in a certain way to be acceptable and accepted.

As a woman in 2016, I don’t have to look to the etiquette texts to tell me how I’m supposed to behave. Sure, I still see posts about what women over 30 should never wear. The listicles are based on old stereotypes and on appearing in ways to please straight men. That might never go away. But nowadays, there are so many stories and images out there from different perspectives that I know I can find something that suits me better. (Case in point, the meme about what women over 30 shouldn’t wear that I love. They suggested avoiding things like “#6: Shirt made of wasps” and “#19: Leaky backpack full of cream of mushroom soup.” I can totally get behind these rules! In fact, I’m now glad that I’m past 30 so I actually get to follow these rules.)

And as a disabled woman in 2016, I appreciate a community engaged in dialogue about viewing invisible disability as being part of a person’s identity and politics, not just their medical status. It’s a concept that a massively diverse group of people share, even in cases where “invisible” or “disability” are terms that don’t make sense, don’t fit, or don’t seem right. Invisible? Hidden? Non-apparent? Invisible to who? Hidden from what or for what reason? They never stop asking these kinds of questions over at IDP. And they don’t tell anyone what they can, should, or shouldn’t call themselves. After all, your identity is yours.

The organization started in 2015 , but the term “invisible disabilities” goes way back. I wouldn’t say it was the hottest phrase you’d find in the 1910s, but it was in use. As veterans returned from World War I with shell shock (PTSD), people said they had an invisible handicap, and sometimes invisible disability was used. In the 1980s, the term started appearing in more and more places, steadily going up as we’ve reached 2016. Many people use the term to say I’m part of a community. People also use it to seek validation and accommodations for an impairment that others might not easily notice or perceive. Some believe that you can’t define “invisible disability” so much as you can say it’s “not a visible disability.” But that’s kind of weird, and it’s still not that helpful. After all, is it an invisible disability if I see a wheelchair but don’t see the actual impairment on the body of the person using the wheelchair? Usually in that case, it’s considered visible whether you see it or not. So you can see there’s lots of different ways to use the word. And really, nobody can say what’s the best use of the word except for the person about themselves.

The Invisible Disability Project has an incredibly active Facebook page where they pose questions and ask community members to trouble through their own possible answers and have a dialogue about it. And they have the new This Is Me ^(TM) media project that is just too cool! Check out one of the videos from This Is Me. This is Zack Purdy, and his video is Closed Captioned. If you find one on Facebook that’s not captioned yet, it will be soon!

Stay tuned. Get involved. Join the conversation. Just know that having a conversation is only one step in what the Invisible Disability Project, and all of us, can accomplish.