Sometimes having a disability can be incredibly frustrating. There are times where it outright sucks so much you want to pound your fists into the wall and cry. There are times when you wish more than anything else that people around you understood what it was like and that they didn’t treat disability like it was some kind of bomb about to go off in their faces if they get too close. After spending the last couple of weeks in bed and dealing with chronic illness and all of the fun things it brings with it head on, here are some of the things that I wish non-disabled people would understand about this:
1. I am still me. Everything about who I am - what I like, how I feel about things, who I care about, my intelligence, my identity - is exactly the same regardless of whether I am obviously sick or not. This means that me being sick does not need to be the only thing that we talk about. While it is my immediate reality it is awkward to talk about, gets old really fast, and typically puts me in the position where I have to make other people feel comfortable around the idea of me being sick. There are a million and one other things to talk about, and I probably spend most of the time that I’m not talking to people dealing with being sick, so a change of topic is nice and better for both of us.
2. This is my reality. Please don’t feel guilty or ashamed about my being sick. It is as much a part of my life as is the fact that I have divorced parents, that my hair is a funky colour, that I care deeply about many inequities in this world. The only people who get to have any guilt are the ones who gave me the genes, and at the time, no one even knew it was possible, so honestly they don’t get to have guilt either. If I wasn’t sick then I wouldn’t have been born, and I like my life. If you feel guilty about it then that means that you want to take away something that is a big part of who I am, and something that while it sucks is normal for me. I wouldn’t know how else to be. It is also a subtle but very real judgement on the value that you place on a life with a disability. If there is something to feel guilty about then that means that somehow the life I lead is less worth living and I would have to respectfully, but strongly disagree.
3. I don’t disappear. When I am sick I don’t disappear off the face of the planet. I may not reach out to people, but I am very much still here. I may not have the energy to reach out and phone, visit, hang out or text message people, but that doesn’t mean that I don’t want people. If you haven’t heard from me in a while, text me, email me, call me, whatever. I still want to be social and see the people that I care about. Dinners and evenings out may be replaced by tea and hanging out on my couch in pj’s, but I still have an open door and would love to hear from my friends. Being sick doesn’t mean that I need lots of space, it means that I need people to be flexible and to come find me because I may not have the ability to come and find you. The bonus for you is that whatever time works best for you is likely to work well for me. I know on my good days I’m so busy it’s hard to pin me down, but having a flare means that I’m pretty pinned down and super accessible.
4. The world doesn’t need to pass me by. I strongly feel that we need to be more flexible in how we define participation, and how people can contribute. I may be unable to go to work, or to physically organize some kind of action, but that doesn’t mean that I don’t have something to contribute, or ways that I can be involved. I can be someone to bounce ideas off of. I can blog. I can write. I can find creative ways to inject myself into just about anything if you give me the chance. It means that my world doesn’t have to stop when I am sick and that I can feel connected and involved with the rest of the world. It means that I don’t have to sit and watch everyone else live while I am stuck in pause. The world that I want includes me whether I’m participating from my bed or apartment or if I’m where ever life takes me. To me it shouldn’t make a difference. I have more to offer and to be in this world than someone relegated to the role of onlooker.
5. You don’t have to be scared. I am not a bomb. I don’t need white kid gloves. You don’t have to worry about not knowing the right thing to say. Being there and honest and real is enough. It can be uncomfortable and awkward for people and I get that, but see #1. I am still me. The disabilities are still there when I’m not sick, and I’m still there when I am. I know it can be hard to realize at first that nothing is different but it isn’t. A disability isn’t something that is catching. You aren’t going to take it home with you. If you wish really hard it isn’t going to go away. There’s all kinds of things that I could talk about here like body norms, and that it’s hard because it makes us aware that there is pain, and that human bodies are fragile and that at any moment a non-disabled person could become disabled (We call you temporarily able-bodied for a reason), but that is for another time. For now it’s more important that you just know there is nothing to be scared of than to deconstruct the fear.
In the end it is things that are so amazingly simple. They are things that shouldn’t even need saying because without disability they are so taken for granted. I’ve lived this reality for long enough though to know that things change. That people change when you get sick, and people who you think you can count on disappear. It is unconscious and unintentional, but it happens regardless. It isn’t that I think my friends are horrible people, and I don’t think that the stock phrase of “finding out who your real friends are” applies. It’s too complicated and too ingrained in all of our social norms to call it something so simple as someone not caring enough or being a good enough friend. It’s just time to challenge the way that we look at disability and why these things happen and find new ways of being.