I don’t profess to be the best advice-giver on this topic, but I’ll share my experience and throw in some recommendations based on what works for me and my brother, who has lupus. If you’re struggling right now as a family member or friend who’s trying to understand your loved one’s disease or disability and how you can best be a help for them, I hope my post will be something of a help for you. I’m writing this from the perspective of someone who’s been in the position of supportive family member, but of course I concede that your loved one and other disabled people are the priority when taking advice on a topic like this. Read what disabled people have to say on sites like Tumblr and Twitter, @EverydayAbleism e.g. and remember that their words are most important.
First things first: you will screw up. Okay? Particularly in the early days. No matter how much you try to understand what’s happening to your loved one and how their life has changed, you will end up saying selfish, ignorant, and often insensitive things. You will end up being visibly disappointed if they have to cancel that day out, especially if that bad news comes on the very day the event is planned. You will entreat them “but can’t you just come out anyway? We’ll be careful/slow/quick etc.” You will even be guilty of thinking in your head at least once “are they feeling as bad as they’re telling me today?” or something similar. You will think ableist things, and even say ableist things.
The quickest and best way to begin making amends on this front is: learn. Learn about the disease/disability, and how it affects your loved one personally. Listen to them and take what they say on board. Their words must become your gospel on the topic. This is particularly important if they suffer from an “invisible” disease like lupus; just because you can’t see the damage or pain doesn’t mean it’s not there. Listening will be your gateway to understanding the lifestyle changes your loved one now has to make to accommodate the changes to their health.
Do what you can to help, but do not take charge and override their decisions or thoughts. Ask. “Would you like me to help you with that?” “Will I push your wheelchair or can you manage on your own?” “Let me know if you need a hand.” Do not push their wheelchair without their permission. Do not, for example, swoop in and lift something off the ground if you see them struggling, unless they’ve asked you to – from my brother: “It can be patronizing, for one, and it’s frustrating to expend all that energy and pain in challenging yourself and then someone comes along and acts as if you’re helpless.” Set up communication, as mentioned above, and then you will be aware of what they want and don’t want from you, and stick to that arrangement.
Without making it a “poor family and friends” sort of comment, it is hard for someone in this position to cope with, particularly at first. It’s not easy seeing your loved one struggle and suffer, and it’s a tempting thing to want to help them as much as possible. But disabled people don’t tend to want to be dependent on you, or anyone, so it’s generally a bad idea to take on such a role. If you are a carer, it can take its toll, but keep in mind what they’re going through, and remember that they can feel guilty regarding their reliance on you, and your assurances that you will be there if they need your help eases that a bit, and makes it a little easier for you too. Doing every last thing for someone is something that quickly becomes unwelcome on both sides.
Important: Don’t beat yourself up if you screw up. Don’t use your “good intentions” as a backbone for a weak and rude defence of ableist scenarios. If you’ve said something that’s upset your loved one, apologize, but make an effort to understand why you’re in the wrong, and how you can amend that to avoid a recurrence. Don’t dismiss their objections as irrational just because you don’t understand why what you said or did was offensive. Don’t make the confrontation all about your feelings or how sorry you are; just apologize, learn, and move on. If your loved one says they don’t want to be the one to educate you on the subject and tells you to Google, Google. Don’t expect them to be ever ready for teaching Ableism 101.
Alrighty, that turned into more of a mini-lecture than I had intentioned, but do take it on board. Don’t dismiss the ideas because they seem too hard to follow. Open up communication; your understanding will be the key. And remember that my brother, who has overseen and added to this post, is not the only spokesperson for dealing with disability; everyone is different, and you should listen to the relevant person or people in your life for the best advice. Don’t forget to check out the @EverydayAbleism Twitter for a very small insight into the micro- and macroaggressions that disabled people go through every day, and look through relevant tags and blogs on Tumblr to make sure you’re listening to the people whose voices are important. lifeofalupie.wordpress.com is my brother’s blog for those curious.
Thank you for reading this post. Any feedback is appreciated if you agree or object to any of the advice I’ve given here.
Until next time,