The following post appears as part of a guest blogger series beginning today with Caitlin Wood of Where’s Lulu fame. You can view the original post plus many more on her blog.
If we can’t be allies then we can’t be friends.
by Caitlin Wood
“The weight of inaccessibility is not logistical. It is not just about ramps, ASL interpreters, straws and elevators. It is a shifting, changing wall—an ocean—between you and I. It is just as much feeling and trauma as it is material and concrete. It is something felt, not just talked about. It is made up of isolation from another night at home while everyone else goes to the party. The fear of being left by the people you love and who are supposed to love you. The pain of staring or passing, the sting of disappointment, the exhaustion of having the same conversations over and over again. The throbbing foolishness of getting your hopes up and the shrinking of yourself in order to maintain. ” -Mia Mingus, Feeling the Weight: Some Beginning Notes on Disability, Access and Love.
I have been rereading Mia’s beautiful piece today, trying unsuccessfully to ignore the lump in my throat and keep the tears at bay. Newsflash! I’m a crier. It’s kind of my specialty, and something I’ve gotten very, very good at. It’s how I process and purge essentially all of my emotions and/or keep from engaging in drastic behaviors like assault and battery. At one point in my life, say my volatile early twenties, I likely would’ve thrown a shit-fit if provoked. Now I’m 30. Instead I just go home, drink too much club soda and torture my boyfriend with my endless, unmitigated emotions. I just have all these feeeeeeeeeeellllings, you know?
But I’m not writing this to beat myself up for my sensitive nature. I have many reasons for being the way I am. And my emotional responses are perfectly valid, legitimate and well-suited to the circumstances and situations I regularly encounter as a disabled woman in an ableist world. Like Mia mentioned, I’m doing what I can ‘in order to maintain.’ And it’s hard out there for a gimp.
Recently I had two separate instances where I experienced ableism at the hands of friends. Not acquaintances, but people who have known me for years and whom I have great affection for. The circumstances and persons involved on each occasion were different, but essentially both situations boiled down to me being the ONE PERSON left out of a group outing because of my disability. In each context, my friend(s) had planned an event that was inaccessible, made zero effort to ask me about potential accommodations and then talked about the event in front of me afterwards like it was no big deal. There seemed to be an implicit understanding on their part that I’d be okay with this.
I was not okay with this.
It was deeply upsetting. Instantly I felt isolated, alienated and disrespected. Why was I being excluded? Why didn’t they think to talk to me about it? That was by far the most distressing part for me. Had there been an acknowledgement of ‘hey this sucks, sorry you can’t come,’ I actually would’ve felt fine about it. I recognize there will be things I simply cannot take part in and despite being a diva I know it’s not always about me, yadda yadda yadda. But there was no such acknowledgement and so I just felt dissed. I expect this kind of carelessness from people who are new to the crip-friend world, but both of these cases were people who have known me for a LONG TIME.
After crying yet again to my boyfriend (annoying I know) out of frustration and confusion, I wondered: what exactly are my roles and responsibilities in these delicate situations? How do I respectfully confront a loved one about their hurtful behavior without risking ruining the friendship? Also: what is it about ableism that makes kind, usually-thoughtful people still engage in these overtly oppressive social-dynamics they don’t even realize they’re perpetrating? Even when you are literally staring them in the face?
I know that whether I like it or not (I don’t like it), the onus of educating nondisabled people about ableism is on me. It’s unfair and a lot of additional stress and pressure I don’t need. And I also have to do it with a smile on my face lest I get dismissed as the stereotypical ‘angry cripple.’ In a perfect world nondisabled people would take it upon themselves to read about the disability rights movement or analyze their own unchecked ableism. But it’s just not on the radar, and (in my skeptical opinion) unfortunately unrealistic to hope for that. All I have to do is read nasty comments from nondisabled people on this s.e. smith article to remind me how far disabled people have to go for equality. Cause those TABs are NOT getting it. I would like to believe there’s a possibility of progress for the disability community in my lifetime and I need to speak up- particularly when it’s affecting my personal relationships. It took these recent events to illuminate how truly difficult it is for me to address these issues with loved ones, because it is and probably will always be an incredibly sensitive spot for me.
I realize that by staying quiet out of fear of creating an awkward situation I’m not only adding to the problem, but also (very weirdly) extending a courtesy to people who aren’t extending the same courtesy back to me. They’ve already made me feel terrible by excluding me and by not confronting them out of a desire to avoid making them uncomfortable, I’m actually getting punished twice over. Because I’m not only nursing my own pain, but expending energy worrying about how THEY will feel once I tell them they’ve upset me. It’s nonsensical, but lucky for me I found a new Gemini therapist (who does Skype sessions with me cause her office is inaccessible! Ha ha?) who can hopefully help me get better at this.
I’m lucky to have several people in my life I consider true allies (shoutout to my bff Toshio and mi hermana amongst others). They’re nondisabled but they’re ‘down.’ I make huge distinctions between Friends and Allies. Friends can be allies but not always or even often. I thank the few, the proud, the allies in my life profusely!
Here are some tips to being a good ally. If our dear readers have any tips on how to navigate these tricky, gimpy waters of personal relationships and ableism, lay ‘em on me! I still have a lot to learn.
About the Author Caitlin, a.k.a Lulu, a dirty South transplant and current Portland, OR resident, is a disabled woman, a disability advocate, a foodie, and a drinkie. Caitlin sees Where’s Lulu as an opportunity to raise the standards of accessibility in everyday mainstream culture. She’s propelled by the fact that, despite being the world’s largest minority group, the disabled community continues to face marginalization and barriers at many levels.