Disability Doesn’t Have a Look
What living with Chronic Hemiplegic Migraine taught me about invisible disability, public judgment, and refusing to shrink my world
Most people don’t see my disability until half my body stops working. At that point it is undeniable. But before that moment? You’d probably be side-eyeing me pretty hard as I step out of my car parked in the handicapped spot. I can feel the stares. I’ve gotten pretty good at reading them.
This is my life. One minute I’m perfectly fine, and the next, a Hemiplegic Migraine decides to crash the party, completely uninvited, no RSVP, no warning. Well, almost no warning. My Service Dog, Ida, usually picks up on what’s coming before I do, which is both a gift and somehow still terrifying every single time. Then suddenly, the right side of my face droops, my right arm goes completely numb, and sometimes my words come out jumbled or I develop a stutter. And that’s before we even get to the visual aura, the disturbances, and the kind of head pain that makes you question every life choice you’ve ever made. I experience this at least once, sometimes twice, a day. Every day.
Every Parking Lot Has a Jury
So yes, I can walk into a store looking like a perfectly able-bodied person who absolutely does not need that handicapped parking space. And then everything can change in a split second. That’s kind of the whole point.
Let me clear something up right now, because I know someone is wondering: I have not driven in years. My wonderful, patient, jokester husband takes me everywhere I need to go. You do not have to worry about me out here behind the wheel with all of these impairments going on. My brain may not work the way it used to, but I had enough sense to take myself off the road a long time ago. Some days that feels like the smartest decision I’ve ever made, which is simultaneously comforting and a little depressing. (Different story for another day.)
Still, we get stared down. Every time. My husband pulls up, we get out, we head toward the store, and I can feel the eyes following us. Judging. Calculating. Deciding, without knowing a single thing about me, that I look too fine to be parked where we’re parked. And I’d be willing to bet they’ve mentally written off Ida as a fake Service Dog too, because apparently disability is supposed to come with a specific aesthetic that I apparently missed the memo on.
That feeling, knowing you’re being judged because you don’t look sick enough, is one of the most uncomfortable experiences I’ve navigated. And for a long time, I let it win. I avoided going out. Going out is already hard enough when your brain is waging war against your body on a daily basis. Adding a side of public judgment to that equation felt like too much. So I stayed home.
But eventually, I got tired of shrinking. I got tired of letting other people’s ignorance dictate the size of my world. So I decided I wasn’t going to do it anymore. I hold my head up now. I walk in, Ida by my side, and I don’t apologize for existing in the space I need to be in. I’m not going to make myself smaller for anyone.
Educating and Fighting Stigma
I want to be very clear: I am not someone who enjoys confrontation. At all. Not even a little. If conflict were a sport, I would be firmly on the bench, happily eating snacks and cheering for everyone to just get along.
But having Ida has changed me in ways I didn’t expect. Because having a Service Dog means constantly fighting for the right to have her with you, which means I’ve had to get comfortable with uncomfortable moments. The reality is that so many people fake having Service Dogs, bringing their untrained, unruly pets into spaces they have no business being in, and the damage they’ve done to the disabled community is real and lasting. Because of them, I have to justify Ida’s presence. I have to prove that she’s legitimate. I have to fight for access to something I genuinely need.
And out of that frustration, something unexpected happened: I got good at it. Not at being confrontational, but at turning those moments into something productive. Instead of getting defensive, I started educating. I learned the ADA laws inside and out. I learned how to explain them calmly, clearly, and in a way that leaves the other person with actual knowledge rather than just an awkward interaction they’ll forget by dinner. I walk away from those situations knowing I planted something, maybe a seed of understanding that changes how that person sees the next person with a Service Dog, or the next person stepping out of a handicapped parking space who doesn’t fit their idea of what disabled looks like.
That’s not nothing. That’s actually everything.
To learn more about access rights for service animals, visit the ADA website, HERE.
Putting It All Together
Here’s what I want you to take with you: disability is not a look. It doesn’t always arrive in a wheelchair or with a visible aid or with the kind of obvious, undeniable presentation that makes everyone around you comfortable and certain. Sometimes it looks like a woman walking into a grocery store, seemingly fine, with a beautiful dog at her side, and then it looks like that same woman needing help getting back to the car twenty minutes later because her body decided to remind her who’s actually in charge.
The assumptions people make in parking lots and store entrances cost something. They cost the people on the receiving end a piece of their dignity, a piece of their willingness to leave the house, a piece of their already complicated relationship with a world that wasn’t exactly designed with them in mind.
I’ve chosen to respond to that with education instead of anger, not because I don’t feel the anger, because I absolutely do, but because education has a longer reach. Every conversation I have, every person I walk through the ADA laws with, every moment I hold my head up instead of apologizing for my parking spot, that’s advocacy. That’s how I push back against a stigma that is far too comfortable living in the minds of people who’ve simply never had to think about any of this.
My disability may be invisible to you right now. But I’m not.
And neither is Ida.
As someone living with chronic, intractable migraine, I empathize with you about how it disrupts one's life, and about its invisibility. What you have is worse than what I deal with, so my heart goes out to you and I admire your courage.
I hate that there are people who pass off their perfectly fine good old dog as a service dog. It is a travesty & makes life harder for people who have legitimate service dogs. There are varied roles for service dogs who come in different shapes & sizes. That people feel so entitled to claim their pet as a service dog is annoying & unfair to everyone. It makes life harder rather than easier for the disabled who need their service dog to function on a daily basis.
I have chronic migraines, but nothing nearly as hard as what you go through daily. I’m so glad your service dog is able to help you cope.
It must be a comfort to have her by your side alerting you as needed.