Don’t talk about us without us.

Don’t talk about us without us.

It’s a phrase I first heard from Maysoon Zayid, a Palestinian comedian who lives with cerebral palsy (whose story I told in my book) and is an advocate for representation – of Muslims, the disabled, and anyone else otherwise underrepresented – in media.

I’m fairly certain I shouted “YES!”  at the screen when I read it. When it comes to living with chronic illness, I don’t want to hear or see the opinions of those who don’t live with this burden in places that are supposed to be held for us who do. It’s not that I don’t value them as people or value their opinion. But they have their own space – a lot of it – and they cannot fully understand what living in my space means. Well-intentioned opinions formed from lack of experience are useless at best and can be immensely damaging.

Choosing to disengage is damaging too. So many people, when they feel like they cannot add to a conversation, turn away from it. Their feelings get hurt because they don’t feel included in the club, even when it’s a club with shitty membership benefits.

So what does it mean to be an ally? How can we help without taking up the space others cannot get access to (because we – usually unintentionally – are in the way)?

For me personally, what does it mean in this world when I enjoy such immense privilege – I am a middle/upper-class, educated, white woman who, other than my autoimmune illnesses, enjoys relative health and ability and not only knows how to navigate multiple complicated systems but has plenty of help doing so – while I watch my friends struggle and fight for representation and voice? What does it mean for me personally, since I have a pretty large ego and love to hear myself talk? What can I actually add without being an asshole?

Because full disclosure – I have been a shitty ally before. I’ve thought that I was special for being an ally. I’ve totally played the “woke” card because it somehow earned me points. I’ve interjected opinions where my opinions were not needed or asked for. I’ve spoken up when I have literally hundreds of friends whose voices deserved to be heard in the medium.

To be a true ally, you must listen, but you must be prepared to stand to the side. You must be prepared, when asked for your opinion on something, to say “I really appreciate your asking, but my friend _____ is who you really need to talk to.”

In the same way that I adore my friends who want to learn more about what I go through with my health, my struggles navigating our broken health system, my frustration with medical professionals who assume I am making up stories about my experience, but still expect those same friends to stand aside when it is my turn to speak and share my story, I must also be prepared to stay in my lane while holding the lane next to me open for the person who keeps getting cut off.

That’s where being an ally gets powerful. My step dad is a former Vietnam Marine, so my mind goes to the phrase “MAKE A HOLE!”, which he uses liberally when we’re in his way (which is often, apparently).

As allies, we get to make the holes, hold the spaces. We have the immense power to use our privilege to make a space for those who are unheard, then get the hell out of the way. Because the people who aren’t being heard have powerful voices. It’s not that they’re not loud enough to break through. It’s that they’ve been forcefully held back, in some cases, from doing so.

But those voices? They’re the most powerful things you’ve ever heard.

This post was inspired by many conversations over many years I’ve been able to have with my amazing, multicultural group of friends who are willing to lovingly check me when I need it. They have helped me grow where they had no duty to do so, and for that, I thank them.

More recently though, I was spurred by listening to the “songs inspired by” soundtrack from The Birth of a Nation. It is a truly beautiful album because, as we know, the more you try to suppress a people, the more you will fail, and the more heart-wrenchingly beautiful the art becomes. Listen here (it’s also up on Spotify). 

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