Must we really be polite?

I had an interesting conversation in the comments of one of my posts recently. 

I had shared a couple of statements telling non-disabled folks that their curiosity is not my responsibility, that they don't deserve access to my medical history, and that asking me “what happened?" is actually asking me to relive a traumatic experience.  

I got a lot of support for this post, particularly from other disabled folks who feel the same way.

And then, I also got a comment from a person in the community that said that yes, we do deserve privacy, but we should also be taking these conversations as opportunities to educate. That that's what's key if we want to break down assumptions. 

In a follow up comment, they also said that politeness is paramount. (Not just from non-disabled people, but from disabled folks, too. 

And while we got to a place of mutual understanding in our discussion, I've been thinking about this all week.

Why is it that disabled people keep being expected to be polite, even as we face continued micro-aggressions? Even as we face ongoing ableism at large and small scales? Even as we continue needing to be vocal to have our needs understood and met?

It's made me think of the “model minority” concept, which was used to describe East, Southeast, and South Asian communities in North America, which were considered to be smart, hardworking, and productive compared to other minority groups. 

The problem with this concept is that it creates a false positive and a harmful narrative that reinforces systemic racism, and ignores significant anti-Asian racism that many have experienced throughout history.

Plus, the reason this concept was perpetuated as much as it was is because it was a protective mechanism. Many people within these communities believed that if they worked hard enough and were productive enough and quiet enough, then they wouldn't draw negative attention on themselves.

There's a similar thing that happens with disabled individuals. Because of the many problematic stereotypes that exist about disabled people — that we need help but also that we are inspiration — it's almost like we're expected to be nice and kind. We're expected to be non-confrontational. We're expected to be cooperative. 

Here's what's wrong with this: 

First. If we don't fall into these descriptions, and if we start to make noise and draw boundaries around what we will and won't put up with, we're labeled as difficult. That makes it so much easier for us to be dismissed and ignored.

Second. A lot of disabled people live in situations where their care and livelihood is in the hands of others. This means there's a power dynamic at play, one that is sometimes abused by carers and family members if the person they are caring for isn't cooperating with them. This means that falling into this “model” ideal of disability becomes a protective mechanism. I can't fault that — everyone should do what feels safe to them — BUT we shouldn't be living in a society where this is ok.

It goes beyond these situations, too. As a disabled person, whenever I need help (e.g. getting on an airplane) I lose all my agency. So it always feels safer to go with the flow rather than bring up an issue (e.g. an ableist comment or feeling unsafe). And so the cycle is perpetuated.

Third. This concept feeds into internalized ableism. If we go around the world believing that the only way we can be effective advocates and educators is by being polite — when we don't always get that same respect and politeness in return — then we're doing ourselves a disservice. We keep ourselves and quiet, and believe that that is what we should be, instead of making big noise and getting people to listen. 

Radical movements — and I believe that creating agency, equality, and inclusion for disabled individuals is radical — need to be noisy. 

It's what Judy Heumann did throughout her lifetime. It's what anti-ableist, anti-racist, feminist, and other movements have always done. 

That's what leads to progress. 

And yes, we can still be kind. We can still be empathetic. We can still be open to a discussion. 

But that shouldn't come at the cost of our privacy. Or our agency. Or our dignity.

There's a both/and here. And we get to find and express where we want to live in that.

Once again, leaving you thoughtfully.