It’s Disability Action Week, which means a number of charities and disability service providers are vying for your attention and money in order to ‘support’ and ‘empower’ people with disability.
What I’ve recognised these past few years is that the focus is almost entirely on cliché notions of inclusion. You know, supporting employment initiatives or uplifting carers and guardians of disabled people. Or my personal favourite, the unintentionally ableist fundraisers that actively exclude the people they’re supposedly trying to support from participating (see: Steptember… or any marathon for disabled people, really*).
But where is the focus on the real disabled people you interact with everyday?
What about looking within your own circle of friends?
I’ve had a couple of people ask me recently how they can best support me. I appreciate the question. Earnest and genuine attempts to support me are always welcome, but I appreciate them more so when I’m given the opportunity to share what’s best for me.
With that in mind, I’ve created the following list (watch out, Buzzfeed):
How to be a Good Friend to your Disabled Friend
Disclaimer: some of these may be universal, but of course, I’m speaking for myself here and cannot claim to speak on behalf of every person ever. Please consult your friends directly. And also buy them something pretty.
Punctuality is a Privilege for the abled. Understanding this is key to knowing me. At any given moment, my knees could give out and I could end up on the floor, immediately shoving a 20 min delay (at least) into my plans. I could be walking fine and suddenly find myself fatigued, with my legs moving much slower than I’d like. I can never ever guarantee my ability to be punctual, unless I drive over and camp outside the venue overnight, rolling up in the same clothes as the day before. So please be patient and understanding. If I’m late because I’m a loser who didn’t manage her time properly, I’ll own up to it 100%. If I’m late because I simply couldn’t move faster, please accept that. Try not to make me feel worse about it.
I may cancel, but that doesn’t mean I don’t like you. Sometimes, the pain and the fatigue can set in and I’ll realise I’ve overcommitted, or perhaps just need to frantically restructure my week to accommodate. As I write this, I’ve postponed two social outings I was really looking forward to because oh boy, I need to rest.
Know when to intervene, and if you don’t know? Ask. Being my friend means occasionally dealing with ableism in public. If it’s needing to advocate for myself to get accessible seating or use the elevator to get upstairs, there may come a time when someone isn’t listening to me, and they may turn to you. Where possible, affirm my stance. Repeat my requests as I’ve made them, and don’t offer your own alternatives without checking as sometimes they might present more obstacles for me and confuse whomever we’re dealing with. But if you don’t know if it’s appropriate to step up, please ask. It takes a while to figure out how to function in that type of situation. I’ll never be offended by you asking first.
Always invite me, even if you know it’s inaccessible. When I was 18, I rejected almost every 18th celebration invitation because it came with a ‘followed by clubbing in the Valley’ comment. That wasn’t accessible nor safe for me, so I said no, and I’m pretty damn sure I lost friends in the process. I stopped receiving invites to events in general. Sometimes, I will have to say no if I can’t get into the building or cannot transport myself there. This is not something I like doing. But if you love me, please invite me. Even if I can’t make it, it’s better to know that you still think of me. And better yet, if you really love me, provide the accessibility information for me. Call the venue, find it on Google Maps and sus out parking and stairs, and let me know. Offer to meet up another time if I can’t make it. If you want to see me, I want to see you, and providing alternatives reduces a significant amount of the emotional labour involved with social related access issues.
My experience is not yours to claim nor to use as inspiration. Please do not share intimate details of my life as a disabled person with people I don’t know. Please do not pry into my disabled experience so you can better appreciate what you have. That’s not friendship. I do not exist to make you feel good about yourself (unless, of course, you’re rocking a cool outfit or telling incredible jokes. In that case, I will absolutely compliment the heck outta you). If you would genuinely like to know more about how I’m feeling, ask ‘do you mind if I ask about ___?’ before jumping in. Sometimes, I’ll have the energy to respond. Other times, I won’t. Please be mindful of that. I really appreciate it when I’m given that respect.
Trust me. Take my word for it when I say I’m okay and don’t need help. A well-meaning grab of my arm to help me on a hill can actually throw me off balance and send me towards the ground. Pulling my chair out for me can cause more trouble than it’s worth. I promise, I will ask for help if I need it. Please be kind, and please respect that as an adult, I know what I’m doing. I know how to manage my day-to-day. Trust me.
*I mean, seriously?! You’re gonna stage a MARATHON for people with cerebral palsy?! Actively excluding many people with cerebral palsy who aren’t able to participate?! Sure, some can and do, opting to participate in a wheelchair or using other aids. But. COME ON. If I see another muscular dystrophy marathon that I can’t actually participate in, I’m going to have things to say. Four letter things.