Nicole Melanson ~
The best and worst thing about living with an invisible disability is being able to pass. Most minorities will be familiar with this term. It means you managed, however briefly, to pass as part of the majority. The mainstream. The normal.
Passing a test equates to success. You did it! You made it! You won! But there are many more associations with the word pass, and most of them are negative.
Passed over. Passed by. Passed in.
Passed up. Passed off.
And that’s what’s happening every time a minority “passes” as a majority. We are giving up the opportunity to be recognized for who we really are, to be seen as multi-dimensional human beings who defy easy categorization. We are not the ins or outs, the ups or downs; we are the in-betweens.
We might be the schoolgirl walking beside her white father, her skin light enough that no one knows her mother is black. Or the trans woman whose feet are so small and her jaw so soft that her Y chromosome comes as a shock. YA writer Steph Cuthbert tells me this nuance applies to sexual orientation too, that “when you’re bisexual, you’re always coming out” to people who presumed you were “just” gay or “just” straight, depending on which relationship you were in when they met you.
I’m not going to lie: I’ve often been grateful for the low profile of my health issues because it means I avoid pity, I don’t get called “inspirational” (a loaded term usually implying a disabled person hasn’t “let” their disability “limit” them), and nobody leaves me out of stuff because they think I won’t be capable. In each instance, passing feels like a win because I get to decide whether or not I’m capable. When your disability is visible, others make those decisions for you.
The problem with passing is that it’s living life in two dimensions, only revealing things already understood and accepted by the mainstream. But not sharing things doesn’t make them go away. Wearing a long skirt to hide a knee brace doesn’t negate the need for the brace.
And for all I value being able to fly under the radar, there are other times I can see the appeal of increased visibility. During the decade or so I spent pushing a pram, taking the elevator was my only option. However, now that I’m often at the shops while my boys are at school, I can theoretically take the stairs or use the escalator instead. Now when I squeeze into a crowded elevator (after waiting my turn), it’s not uncommon for me to weather a sneer from people with prams, shopping trolleys, and wheelchairs. I get it – they have no alternative. But when I’m unwell, I have no alternative either. On a bad day, I struggle with level changes, and any kind of pattern – like the gnashing of an escalator’s teeth – can make me dangerously dizzy.
Even when you do “come out” as a disabled person, it’s hard to articulate that many disabilities are nuanced and variable. If you break both legs in a car accident, people expect you to use a wheelchair. It’s harder for people with healthy brains to comprehend that neurological illness can mean your legs might be perfectly fine; you just don’t feel them.
Where the confusion deepens is when you have a disability that looks different every day. Anna Spargo-Ryan has written about this dichotomy in mental illness and I personally experience this with autoimmune disease. AIs flare, meaning you can have days when you feel strong and healthy, followed by days when you can barely function. Unfortunately, for all you might try to pinpoint triggers and attempt to curtail a flare through diet, exercise, or medication, there’s really no surefire way of knowing when a flare with hit, how long it will last, and whether it will be The Big One – the true game-changer.
I have said yes to things when I was feeling normal only to find myself unable to follow through thanks to a flare eg. the time I offered to help at a preschool fundraising BBQ, then couldn’t cope with the heat rising from the grill or hold my grip on basic math. To avoid running into this situation again, I mostly just say no now. I won’t volunteer to scoop gelato because leaning into the cooler might give me vertigo. I won’t commit to a night on the town because I might need to go to bed at 7:00.
I can appreciate this unpredictability proves inconvenient and frustrating for other people. It’s inconvenient and frustrating for me too, and this post is partly me trying to justify that and apologize. But I want to do more than just make myself understood. Generally speaking, I’m a confident person, capable of standing up for myself, and speaking my truth. But what about all those people who can’t? What about those with physical, mental, or emotional disabilities who have lost their voices altogether?
I recently had a conversation with authors Leah Kaminsky and Lee Kofman about entitlement, during which I questioned whether or not I was disabled “enough” to write this piece. For the most part, I can still go about my daily business, run a household of 7 (5 of whom are young children), engage as a mother, wife, daughter, and friend, run a blog, read a book, and write. I can sit in doctors’ offices, detail my symptoms, and debate treatment options with near-professional fluency. I can expertly gauge whether vomiting will make a migraine better or worse, and then just get on with it. If there’s no elevator, I can opt to take the stairs – even on the days it hurts or leaves me breathless.
But I also know what it’s like to be “legitimately” disabled – to tell the school office that my kids will be late because I’m waiting for the sensation to come back in my foot so I can drive them. I know what it’s like to close a laptop with 80 unread messages because the words resemble smudges on the screen. And I know that when I feel like that, when I can barely stay awake, make it through a paragraph, or utter a single sentence without slurring, what I long for most is for someone else to take over – to turn down the background noise, bullet-point important information for me, and speak on my behalf. And I know there are people living like that every moment of their lives. People who are always disabled. People who don’t have enough “spoons” as Christine Miserandino calls them to decide when and where to use them up.
So whether you’re one of those people, you’re a part-timer like me, or you’re “only” someone who loves someone like us, I know there are days when you simply don’t have it in you to order a coffee, never mind get out there and advocate. And on those days, you’re welcome to blow my cover. I’d much rather lend you my voice than pass.