Questioning my future as an advocate

I’ve been doing a lot of reflecting this month. I’ve been noticing how much calmer my mind is when I just occasionally check social media and feel no obligation to constantly refresh apps like instagram and facebook. Which has got me thinking a lot about the advocacy volunteer work that I do.

Being an advocate burns me out on a consistent basis. I need to take lots of breaks. But sometimes when I take extended breaks from it I feel guilty because many people have told me that my advocacy and writing are the things that made them care about accessibility and connected them to the cause. That is a high compliment, but it can also make me feel a lot of pressure to keep up with it all even when it’s heavy and hard for me. I also created a brand new website for my advocacy this year, and every week that it sits there without an update I feel like I’m failing.

As part of my reflection on this, I keep re-reading this paragraph that a mentor wrote to me last summer:

“You are doing great work and you ARE making changes but it’s also ok to rest and sit exactly where you are. It’s vital to rest. To switch off from it for a few days. To do the things you love and recharge so you can come back to the fight if that’s what you want to do. Always remembering that you don’t have to do it.”

Always remembering that you don’t have to do it.

I need that reminder a lot. I think my brain automatically tells me that I have to do this – I have to share my lived experience to try to make more people care about the disabled community. But plenty of the time I don’t think I particularly want to do this. Fighting for my right to have access to the world around me is draining. I take breaks to recharge, and the energy for it disappears as soon as I dive back in. But the problem I keep coming back to is this: even if I stop advocating and sharing my story online, I will still have to advocate for myself every day of my life as a wheelchair user. I can’t shut it out or completely turn it off.

But maybe it won’t feel as hard if I don’t relive it all for a wider audience?

Maybe I really don’t have to do it. Maybe I can lead a quieter and more private life with one less big stress. Maybe I don’t have to sit in these feelings of frustration so much of the time.

But that erases all of the good that happens to me as a result of being vulnerable and open about my disability online: the rallying behind me and the support I get from so many amazing people, not to mention the important friendships I’ve made as a result.

So I’m weighing it all right now. My brain is busy and my body is tired. Maybe advocacy is too much for me. Or maybe my life will feel emptier without it.

I keep telling myself that this is my purpose – writing and advocating for better accessibility and disability awareness. But sometimes I wonder if I just keep saying that because I’m afraid of what will happen if I don’t attach this big purpose to my disability and my pain. I always roll my eyes when people tell me “everything happens for a reason,” but I think deep down I might still be whispering that to myself.

My ‘reason’ since becoming disabled has always been to share my story to help make a difference – to make the most of this. But maybe “making the most of this” is waiting for me there in the unassuming moments in between: reading a good book while curled up in a blanket, laughing with my friends, enjoying a cup of coffee in the morning, speeding down a hill in my wheelchair and feeling like I could take off flying, holding hands with my husband as he excitedly tells me about a movie he just watched, standing back up and taking a few more determined steps after a fall. All of that has felt like more than enough, lately.

Maybe I don’t need to weave a narrative through it all in order to make sense of my disabled life. My life has meaning even if it isn’t being used as a teachable moment for others.

And maybe all of this is selfish of me.

Always remembering that you don’t have to do it.

I don’t have to be an advocate. But do I want to?

I don’t think I have the answer just yet.

I guess I will have to look a little deeper for a little longer to find that out. For now, I just won’t force it. I’ll do what feels right day by day. I’ll remind myself that if I choose to leave this behind, there will still be so many other brilliant, hardworking disability advocates out there whose contributions far outweigh my own. And I will probably continue being really bad at responding to DMs and emails.

Thank you for reading. And thank you, as always, for your patience as I sort through these big, messy thoughts.

This isn’t an easy thing to navigate (just like the sidewalks in St. John’s).