“But you don’t LOOK disabled”

It’s creeping towards the end of Disability Pride month, and I’ve been debating whether or not to make this post. It’s only in the past year or so that I’ve begun to accept the fact that I am, actually, disabled. For any family reading this, it may even come as a surprise: sure, you know I deal with chronic illness and maybe I’ve discussed a bit of my experience as a neurodivergent person, but surely that doesn’t make me disabled, does it? (I hope you think about why you are resistant to that label instead of actually asking me that question.)

“You look so healthy,” you might say, or, “You are so functional!” And those things are not untrue, at least to the casual observer. There are plenty of folks in the disabled community for whom their disability is an indisputable (read: visible) fact, who experience much greater marginalization than I do, so what am I really doing here, talking about Disability Pride Month, when I appear to be so able?

I have only slowly, over the past few years, realized the price I pay to look like an able-bodied and able-minded person. It mostly comes in the form of exhaustion/burnout, which in turn aggravates my invisible illnesses, which in turn saps my energy even more, which in turn makes the illusion of capability harder and harder to hold up. Or, maybe not the illusion. I am capable (until I’m not). But just because one is capable doesn’t mean they should. I am capable at the cost of my vitality. I am capable at the cost of my mental health. I am capable at a cost that is too great to continue to pay.

If I embrace my disabilities, honor them, and accommodate for them, I stand a chance at living a truly fulfilling life. But first that means dealing with the fact that I can’t do as much in a day as others can, or even as much as I would like to. I can’t be the woman who has/does it all. Instead, I have to prioritize with much greater scrutiny than your average person: is showering a priority today, or is making a healthy dinner? Is getting silence more important, or feeling connection? Should I move my body more, or will more be too much? This is made all that much harder by the fact that I often can’t tell what is burning me out until it’s too late, since I still get stuck in the pull of dopamine/reward for doing the thing society has conditioned me to value above all else: being productive.

Chronic Illness Chronicles: My view for way too many days since 2021

Anyway, I have debated whether or not to make a post about this because I am not a poster child for disability. For my physical disabilities, I absolutely would wave a wand or pay a dollar amount for a cure to make it all go away so I could be a “normal”, “healthy” 38 year old woman (do not ask me about my medical bills for the last 2+ years, you would make the deepest frowny face). I can accept that my chronic illnesses have become a part of my identity and who I am, but I often wish they had simply never appeared. I don’t think it’s fair (whatever that means), and that upsets me more often than I care to admit. I am furious about it some days—far fewer days than in previous years, but still—and don’t feel an ounce of pride about it. Except for the fact that I have endured quite a lot to be upright and typing this from a place with any semblance of acceptance—and even that is a pride at having overcome the worst of it (fingers crossed) by endlessly pursuing answers and treatments.

(There’s also a lot of anger in regards to how the medical community has treated me over the last decade: ignoring my complaints; refusing to pursue more in-depth testing when general tests didn’t show anything wrong; how even with an indisputable diagnosis [from an outlier, functional MD not covered by insurance] mainstream doctors still act like I’m making it all up because I “don’t look sick.” If they had taken me seriously when I first started showing symptoms, I might have been diagnosed years earlier and been spared some of the permanent damage.)

But I love the idea of pride and acceptance for my fellow disability community members. I wish I could be there, with them, fully embracing this part of myself instead of constantly resisting and fighting it. I’m just not there yet. Maybe it’s my internalized ableism, or maybe it’s because there are things in life that I want that my disabilities could prevent me from having, and I wish I didn’t have to worry about it. Or maybe it’s this feeling that if I embrace my disabilities it would mean I’d stop fighting for my health to improve, and I can’t stomach that. Chronic illnesses aren’t quite the same as other permanent disabilities, because there’s so little we actually understand about how they work, or how permanent they actually are. Some days, after my various treatments and lots of rest and hydration, I feel great–almost pre-illness levels of healthy. That gives me hope that I might some day fully recover from at least a few of the things that are dysfunctional in my body.

Is that wrong? I don’t think so. But is devoting excessive amounts of mental energy to finding a “cure” right? I don’t think so, either.

I find my mental disabilities much easier to accept because I’m nearly certain I was born this way. I believe these disabilities truly are a part of who I am, and are only a disability from a social standpoint. Our society is not set up to deal with people like me (at the very least my brain was altered by C-PTSD, but in all likelihood I am among the 80% of undiagnosed, high-masking, autistic AFAB women), but when I acknowledge my struggles and allow myself to accommodate for them—allow myself to not live like a neurotypical person, or expect my brain to work like theirs, and stop criticizing myself for how “sensitive” I am, etc.—I suddenly find myself able to live a decent life without burning out every four to six weeks, or melting down weekly. (JK, I’ve never had a true autistic meltdown; we high masking girlies are pros as keeping it all inside until we develop autoimmune disorders that force us to slow down and be gentle with ourselves).

But I still live in fear that I am missing some essential understanding in most situations. I worry that my writing doesn’t “work” sometimes because I don’t see my neurodivergence coming through, or that I dislike a book I’m reading simply because I can’t read characters on the page like I can read people in real life. I often disagree with writing advice from respected professionals because their way of composing a scene ignores the needs of a neurodivergent reading experience, but who am I to disagree? I’ve only just sold my first novel. I generally find I don’t like stories other people rave about—is it because I’m contrarian? Is it the pathological demand avoidance? Or is my brain just wired so differently that I genuinely don’t enjoy what most other people enjoy? Is my neurodivergence the reason why I don’t seem to “get” short stories? Is it why I have a hard time reading graphic novels, because I get really mixed up on panel flow that doesn’t seem to confuse anyone else? Is it why I have trouble maintaining friendships, and have a life-long history of being left behind by people I thought were my closest friends in the whole wide world?

Anyway. This is my coming out post, I guess, as far as disability goes, because it’s not obvious that I’m disabled (in fact some doctors would say I’m fine, because of course my lived experience means nothing if it doesn’t show up as a significant anomaly on their surface level blood tests.) I “look normal” because all my difficulties are internal, and I’ve spent a lifetime trying to “look normal” for the world. Lots of disabled folks “look normal” because disability is honestly much more normal than folks want to believe. I wasn’t born physically disabled (okay technically I was, my leg was twisted, but they fixed that with a brace when I was an infant), but I became disabled through no fault of my own, and that can happen to anyone, be it from disease or accidents or sudden latent gene expression.

I still don’t feel like I have a right to take up space here, and probably some of you will agree with me. But I’m trying to be open about my disability to help me get to that point of accepting it. Maybe even being proud of who I am because of it. I can’t accept that I need accommodations if I’m unwilling to ask for them. I can’t accept that I need a particular kind of self care if I’m unwilling to let that interfere with how other people perceive me.

Ableism is a hell of thing, and I’m doing my best to dismantle it within myself. So even if I can’t yet say I’m “disabled and proud,” I can say “I’m disabled and I’m not ashamed.” No one should be ashamed for living with a disability, no matter how visible it is or not, and no matter how many accommodations you need to live a good life.

Anyway. Be good to the disabled folks in your life. Listen to them when they talk about their experiences, even when it makes you uncomfortable or anxious about your own health. If disabled people were treated with the kindness and humanity we deserve, maybe the idea of becoming disabled wouldn’t be so horrifying to so many people that they would rather not see us or hear about us at all.

And there’s this, too: don’t ask us to be perfect representation for our disabilities or the disabled community as a whole. Don’t ask us to be ideal, inspirational, or to accept a half life because we need different things than able-bodied people. And for the disabled authors, don’t ask for our characters to be perfect representation, either. It’s not healthy, and frankly it’s boring.

So with that…Happy Disability Pride Month 🙂

Four feral girls believe they are princesses from another world. The world believes they are brainwashed kidnapping victims.

What is the truth?

You decide.

Add The Wilderness of Girls on GoodReads.

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