Dear able-bodied partner,
At your predecessor’s apartment, I always took my shoes off as soon as I walked in. It wasn’t a house rule, but an effort to speed things along. My orthotics make shoe removal a complex procedure involving clasps, straps, and — much less sexy — a foam pad that looks like a Pringle. (If you don’t flinch at the Pringle, you’re a keeper.) It’s a clumsy detour to take once you’re making out so, as usual, I thought ahead.
That’s a habit cerebral palsy forced me to form.
The ultimate mood-setter. Photo via iStock.
One night, I forgot until we were already in her room. She waited on the bed while I sat on the floor to unlace my sneakers, and I’d just pulled the left Pringle free when I heard, "Um … do you need help?"
We need to talk about that question, and all the ones like it that I imagine you have.
What if you say the wrong thing? Do you acknowledge my disability right away or not at all? Should you just ask? Is that weird? How much are you responsible for? And where is it OK to touch me? Should you even want to? What does it mean if you do? Or if you don’t?
Do you need help? Thought so.
There are expectations for couples like us. Namely, that I will be grateful, that you will protect me, and — most importantly — that we will "overcome disability" together because that is what love looks like. No one says as much outright, but they reinforce it in smaller, sneakier ways. I can guarantee, for example, that you will earn praise for being with me. The truly bold (usually strangers or well-meaning relatives) will actually tell you how "nice" it is that you’re dating "someone like her." But more often, your friend will get too honest one night, admit "I don’t know if I could do that," and then ask you "what it’s like."
Someone will admit, "I don't know if I could do that." Photo via iStock.
Your panicked questions, the constant pressure, and those backhanded compliments all imply that my disability is a problem I need you to solve. That’s kind of the only language we have for when able-bodied and disabled people get together. And I, for one, am pretty bored of it. So let me offer an alternative:
I don’t need you to save me. I need you to see me.
Notice what I did not say just now. I didn’t ask you to "see me, not my disability" or to "see past cerebral palsy."
Lots of people are on the "see past" bandwagon, and I understand why. Being disabled can feel like not even having a shot at independence, connection, or being taken seriously, so of course there’s an impulse to distance yourself. That’s what happens when the world caters to somebody else. But personally, I don’t want you to separate cerebral palsy from who I am. Because (you ready for this?) it is who I am. I don’t even know how it’s possible to "see past" something so fully baked into my experience. Instead, I need you to work a little harder and understand disability as part of my value rather than a caveat on it.
What does that look like? The best answer I have is that it looks like letting go. Instead of putting my disability in a vice grip, accept that it takes up space. Don’t try to defeat it; that is neither possible nor your job. Reconsider the assumption that I don’t want it and that you shouldn’t either. Because if you want me, you want it, too. There is no me without it. The fact is that vilifying cerebral palsy doesn’t make it count less. So acknowledge that it matters, and that’s not a bad thing.
Instead of putting my disability in a vice grip, accept that it takes up space. Don’t try to defeat it.
On a practical level: Maybe don’t ask if I need help with something I’ve been doing without you for 27 years. Trust that if I want help, I will say so. I’ll tell you right now: You will need to carry the drinks to our table, offer your arm when the stairs have no railing, and hold my hand through at least one major medical event. If you want to be the hero, there’s how. Otherwise, though, back off and listen. Give my body the room and time it needs. (It’s been through some things.) Find a better compliment than "you’re not like most disabled people." When you tell your friends, resist the urge to clarify that I can walk. And most of all (this is the hard one), let me fail.
No one likes to see disabled people struggle. I think it’s just too much, like watching a turtle get stuck on its back.
But when you respect someone, you let them make mistakes in front of you.
Photo via iStock.
You let them try things you’re not sure will work — or that you’re sure won’t. You let them drop the defenses, screw up, and speak honestly. And that, more than any kind of help, is what I need from you.
That, to me, is what love looks like. Respect.
I don’t want to take my shoes off first thing anymore. I don’t want to apologize for my body or downplay its uniqueness. I don’t want to worry about whether or not you are afraid. I want to be all of myself. And I don’t want you to "love me anyway."
I want you to love me because.
