This morning a dear friend of mine posted this meme on their social media, and it was as if a warm ray of sun was warming my face.
Meme defining dynamic disability.
Source: Joannanobanana/ Fair use
Alongside their post, my friend wrote, “Oh hey, this is me….”
The Meme That Changed Everything
I had to smile because this is me too, and it explains why I haven’t written a post for a few months. In fact, I haven’t written because I’ve been feeling really, really good. I’ve been feeling physically stronger than I have for a while, and so that makes me feel like an imposter.
I have had a great summer; I moved, I traveled to Alaska, and I’ve been working nearly full-time at various consulting gigs, so who am I to be writing a post about living with chronic pain? About having a disability? I have only needed my wheelchair in the airports and only missed about three days of work due to pain, which for me is almost none.
Make no mistake, my pain has still been between a 5 and a 6 on the Mankoski Pain Scale every day. I just haven’t had so many flares or injuries that take me up to the 7s, 8s, and 9s where I can’t really think or function. I’m super grateful for that, and I attribute it to positive changes in my life, consistent movements and physical therapy, and also to good luck.
But feeling relatively good makes me feel like I don’t really “deserve” the designation of having a disability.
The Power of Labels
I’ve had to learn so much about the label of “disability.” To me, it means acknowledging the very real limitations of living in my body and learning to live life in a way that keeps me safe, happy, and healthy within those limits. In that sense, owning my disability is hugely empowering for me.
I was in much worse shape when I pretended I wasn’t in pain, or when I’d push through the pain so hard I ended up having emergency spine surgery. With a disability, I allow myself the mobility aids I need, I leave the meeting or the dinner when I get too tired, and do my best to budget myself the time and money I need for mental and physical therapy—and all the things I need to stay as strong as possible.
At the same time, I’m aware that others don’t hear “disability” in the same way. It wasn’t so long ago I was a person who thought it meant that I was weak or less than. My internalized ableism made me feel like calling myself “disabled” was a way to take advantage of others. I thought that if I admitted that I needed accommodations, I was admitting that I was weak or lazy.
But the truth is, accommodating my body is not a matter of choice. It is a necessity. And it is not taking advantage of others to ask for the help that I need.
Even though I don’t believe those things anymore, those dichotomies make it even harder for me to make sense of having a kind of disability that is sometimes invisible, and that is inconsistent. Sometimes I wake up in the morning and roll out of bed ready to take on the day, and sometimes it takes me 20 minutes to get out of bed and soak under hot water before I can really move.
And there is not always an explanation for that. Sometimes I can make it to my kids’ soccer games and stay the whole time to cheer on the sidelines, sometimes I have to sit in a special lawn chair with neck support and leave at half-time. Sometimes I need my wheelchair, and sometimes I can’t do it at all. And there is not always an explanation for that.
Labels are hard. I don’t want to limit myself by putting myself in any particular box. And labels like “disabled” come with the gravity of all the weight and assumptions and stigmas people assign to them.
Finding a New Label
But embodying this label of “disability” has been empowering for me, and has allowed me to change the way I live to fit my ability, to talk openly about what I can and can’t do, and to share my experience with others.
Chronic Pain Essential Reads
Now thanks to authors Brianne Benness, @joannanobanana, and Inês Mália Sarmento, I have another label, “dynamic disability,” which will help me celebrate my good days and be more accepting of the bad. I’m so grateful.
