Take it from someone whose routine trip to the GYN turned into a kerfuffle of mis[fat]diagnosis--when a doctor is supposed to be treating you for something and launches into the fat talk you can politely tell them "I am not here to discuss my weight with you. I am here to discuss my bits, my HIV status and whether I am at risk for cancers." I like to have a mantra to prepare ahead of time.
My bestie Jacqueline Mary is disabled in a way where it is not readily apparent to the naked eye. Her arm was shattered in a bike accident a couple of years ago and the initial surgery restored only a small percentage of function in her arm. But because she still has her left arm and most people aren’t particularly observant, it’s not obvious right away that there’s anything different about it. She often has to tell people not to touch her arm, especially strangers in public, and sometimes people we know don’t even believe her and continue to poke, touch, even punch her in the arm because they think she’s joking. She’s also in a lot of chronic pain that has gotten worse over the last couple of months.
She posted the following note to Facebook and I really loved it. Not just because she’s my friend, but also because I thought it was an exceptional example of stating your needs and asking for help–I believe vulnerability is a sign of strength.
What was a huge bummer about it was that she reposted it several times to her Facebook feed and it only got 10 likes. Whereas the day before when she posted about being hungover she got 30 likes. It speaks to a lot, especially to how uncomfortable people are about disability and vulnerability.
I’ve learned a lot from Jacqueline about disability lately and the most distasteful one was that men often use it as an opener to hit on her. GROSS!
So here’s a dating pro-tip: if you see someone has an injury or a cane, don’t use it to make conversation to hit on them. Hit on them in a different way. Get creative. Here are some ideas.
Every person who has chronic pain or a disability has different needs and asks around it, but most folks really want to be heard. So if a friend of yours is asking for help or being vulnerable, a simple “like” to say you heard something, or even (my favorite) a comment heart (<3) is a sweet gesture. I hope you like the following piece by Jacqueline Mary.
This is a brief PSA about the status of my arm – I’d appreciate some likes on this (aka- i read this, that sucks).
Things are not at all great. My radius is no longer attached to my wrist, which means it’s just kind of floating around in there. My hand is quite literally dangling off my ulna. In the last 6 weeks, my pain levels have risen pretty dramatically and my mobility has lessened even further. I’ve been to the clinic several times for this, but since I’m going to Bellevue and they’re seeing me for next to nothing, this is going to be a long process. They’re looking into surgical options and trying to see if anyone is crazy enough to cut me open without knowing what’s really happening in there. My MRI failed because of the amount of metal in my arm (which I’m told over and over again is exceptional).
The result of this is that I need my friends to understand. Guys, I’m tired. Fucking exhausted. Being in pain every moment is a huge head trip in so many ways, but the most noticeable is that it sucks all your energy away. Aside from actual physical fatigue, I’m mentally fatigued. What I need to do for my arm and what I need to do to survive are at war. The strength it takes to not just quit my life and stay in a comfy bed with my arm elevated is really wearing on me. This makes me, basically, bitter and cranky. I apologize.
In addition, my arm is extra fragile these days. Even a tiny bump creates big pain. This means that I don’t want to go to things where I’m sure it will be jostled. I’m actively trying to avoid anything with crowds (especially shows, unfortunately). I’m driving most places these days. I can’t ride my bike anymore. The train, when it’s busy, is pretty awful for me. Please still invite me to things, but understand that I may decline for what looks like no good reason.
I’m wearing ace bandages a lot more these days, and it’s looking like I may turn back to the sling. Both of these are scary and stressful, as it’s much more of a physical indicator of my disability than I’ve had in a long, long time. This results in even more unwanted attention from assholes on the street. It also creates an appearance of being weak, which is extra scary because, well, I am, and it makes me feel like a bigger “target” to be attacked. However, if any of my creative, DIY, or textile manipulating friends want to make me a beautiful sling and/or wrap, I would seriously love that. Especially if it didn’t look like a sling and therefore made me feel a bit safer.
I know that most of my friends don’t have experience with disability, but I appreciate that you’re trying. Here are a few things you can do to make life a little easier on this crip:
1. Don’t touch my left arm. Ever. Don’t push it, don’t pull it, don’t try to hold my hand on that side, and don’t insist I hug you with both arms. Don’t be insulted if I pull away from you, I’m most likely in pain, aka not trying to get away from you. (And, for the love of god, don’t fucking tell me my scars are beautiful and/or give me character. Don’t downplay my disfigurement.)
2. Help me out. Offer to carry things for me. Insist. Help me open jars, doors, envelopes, even my coat. If you see me trying to do something stupid and struggling, offer to do it for me. I know, I know, I can get pissy when you offer, but offer anyway. The pissyness is a result of feeling bad about needing help, not a result of your offer.
Another GREAT way to help is walking on my left side if we’re in a crowd. I’d much rather have a trusted friend on my bad side than for it to be open to whatever dickbag wants to knock into it. Take the lead, guide us to a safer place, and don’t be afraid to yell CRIPPLE COMING THROUGH!
Also, feel free to call people on their shit if they’re not being kind or a good ally to me. I’m so worn out from having to tell people “Don’t touch me there, don’t push me, that hurts, THAT REALLY HURTS,” just to be met with giggles. It’s not a game, I’m not playing, and it’s not funny to me. Think of it as a matter of consent.
3. Be understanding. If I’m cranky, late, or cancel completely – I’m sorry. I can’t do all the things I want to do as it is, but it’s getting much harder lately.
4. Be kind. I’m tired. I’m sensitive. I’m touchy. Just be sweet to me. I try to not be sensational about these things, but I still have pushback where people seem to think I’m exaggerating. I’m not. I know I mostly look fine, which is why things have gotten to this point before doctors would take me seriously.
Guys, I’m fucking scared. There isn’t really any other way to say that. Every time I go to the doctor, they manipulate it which makes it hurt even worse. I will not go back on painkillers. The “best” option I have is a surgery where they will take apart my entire arm (from the elbow down) and completely restructure it. This means another hospital stay, recovery time, physical therapy, and a bunch of other things I don’t have the time or money for. I have no idea how I’m going to manage that, but I trust that I’ll figure it out when the time comes.
So yes. This was a “brief” PSA about the status of my arm. Thank you for reading. Feel free to ask questions if you have any, but mostly I’m just very grateful to have friends who will read this, get it, and try their best to accommodate my bullshit.
Jacqueline is going in for major arm reconstructive surgery tomorrow morning. She’s going to have a piece of her hip inserted into her arm! The recovery period is going to be intense and require a lot of cabs. It’s so hard to know how to help, but here’s a concrete ask you can probably help with (or signal boost)!
Folks reading this in any city served by Uber cabs–a smart phone cab hailing service that allows you to call a car with your smart phone, which is actually a lot easier in NYC than calling a car service. Uber is offering a special where if you sign up now, as soon as you use your first free $20 ride (that’s right, it’s free for the first ride with this sign up), Jacqueline’s account will get a $20 bonus. Which means a free ride to or from work for her! You can help her just by taking a free cab ride!
Sign up for Uber here, Jacqueline’s referral code is uberjacqueline but should be automatically entered when you click that link!
These are the North American cities Uber serves–I love it and it’s pretty easy to use, especially the UberX service, it’s even just a little bit cheaper than a standard Brooklyn car service.
ATLANTA BALTIMORE BOSTON CHARLOTTE CHICAGO COLUMBUS DALLAS DENVER DETROIT HAMPTONS HONOLULU INDIANAPOLIS JACKSONVILLE LOS ANGELES MINNEAPOLIS MONTREAL NASHVILLE NEW JERSEY NEW YORK CITY OKLAHOMA CITY ORANGE COUNTY PHILADELPHIA PHOENIX PROVIDENCE SACRAMENTO SAN DIEGO SAN FRANCISCO SANTA BARBARA SEATTLE TORONTO TUCSON WASHINGTON D.C.
And if anyone has a lead on how to build a clamshell for Jacqueline to lounge in during her recovery, or the money to finance putting 100 pink and white balloons in her bedroom let me know.