feature image via shutterstock.com
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.
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 okay 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.”
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, disabled or not, 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. Not entirely, of course — I am large, I contain multitudes — but if I should be proud of my other identities, why not that one? I’ve been disabled for as long as I’ve been a woman, gay and, y’know, alive. So 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? (Don’t worry, I won’t ask you to unlearn one of the most fundamental and pervasive disability lessons and then leave you with no clue how to do it.) 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.
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. 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.
So excellent
“Do *you* need help? Thought so.” Thanks for giving it. It is utopian (in the best possible sense of the world) for us to be able to read each other’s thoughtful and well-crafted words, and understand each other’s feelings and experiences. It is a practical contribution to making a better world, having better sex, etc. So thanks for this.
Thank you for writing this
This is exquisite. Thank you so much for writing and sharing it. “I want you to love me because” is a sentiment I share, and your simple articulation of it made me tear up.
‘you will earn praise for being with me’
As the able bodied partner to a woman with a disability,this resonates. So much.
I once got thanked by a close family member for loving her.
(Like I have a choice)
I don’t recall my response, I was too busy trying not to lose it.
To me getting praise is right up there with hearing ‘I know how you feel’.
I don’t know how she feels,truly.
I knows what she tells me,and I see what she goes through to get through a day.
Thank you for GETTING IT.
As a person with an invisible disability and an able-bodied partner, this made me cry. Thank you.
This! I moved in with my best friend and my partner last August and since the three of us have been living together it’s become more apparent how similar I am to my best friend (who sees their mental illness as a disability) than my partner (who is not mentally ill at all). I’ve known and accepted that I have anxiety and Seasonal Affective Disorder for years but I hadn’t identified as disabled until it was kind of right in my face how much I am, in fact, disabled by my mental illness. I didn’t realize how much space my mental illness took up until there were other humans around to compare to. It’s been the source of several discussions with my partner lately so this piece is really timely.
So good, thank you
You’re so awesome, Carrie
Thank you so much for this. It was beautifully written and feels useful outside of visible disabilities as well. For someone like me, who can have a tendency to try and “fix” various things, it’s always helpful to be reminded of the agency of a partner, and that I am there to ‘help’ (or whatever a better word for that is) in the ways they tell me they need, not what I might guess that they need. If that’s even — I know that language is still “fixy” or something and I guess what I’m trying to say is that this is really helping me look inward today.
I am really looking forward to more essays like this (and more Carrie) on AS!
Dear Carrie’s Future Partner,
I hope you also like Belgian beer, gay movie nights and pizza pool parties. And hanging out with me.
Requirements as crucial as any I’ve listed here.
PS my mom called specifically to say she loved this comment. Felt like you’d want to know.
This warms my heart SO MUCH.
This is very close to home. Thank you so much for writing this.
This is pretty much exactly how I feel as woman in my 30’s with CP. I don’t have an issue with my CP. It just IS. I think the hard part is finding the balance of seeing all parts of an individual, not treating them like the disability is the defining characteristic or ignoring completely that it exists. Great article!
I feel this sooo much. My partner is always offering me help and saying she wishes she could take it all away. Yet she consistently refuses my help and hides any pain or discomfort she has from me. It’s fine for her to take care of me pretty much daily but whenever she is sick she thanks me constantly for taking care of her.
Thank you so much for writing this Carrie.
You write so beautifully -I’m really enjoying the pieces you’ve written for AS. This gave me a lot to think about as well.
“What does that look like? (Don’t worry, I won’t ask you to unlearn one of the most fundamental and pervasive disability lessons and then leave you with no clue how to do it.)”
Thank you so much for sharing this – and for helping me to see what it might look like. Such power with so few words.
Thank you! Well written and I appreciate your perspective. I am a recent amputee (leg, cancer, last year) and so am trying to wrap my head around disability as a dimension of my identity. I have the good fortune to work with children, who see me in a different light than many adults seem to, and so I have been spared some of the comments and conversations you mention… But from now on, all the new people I meet will know just this version of me, the one legged person with the prosthetic that broke while teaching today. And so I feel drawn to learn from people who have lived longer with disability ‘baked in…’ Thank you.
My favourite article of the day. Thank you so much
This was so good. Thank you for sharing your words with us!
This is brilliant. As a disabled person with an able bodied partner this is just…fantastic. And makes me feel really lucky with my partner, which is always a nice reminder to have. And thank you to Autostraddle for giving space to disabled voices, I often feel we are the most forgotten about minority, so this is really important.
You are such a good writer!
Beautifully written and truly wise . Thank you!!
this makes me wanna date you
loved it
This is fantastic—perfectly, incisively worded. Thank you.
One of the most beautiful things I have read in such a long time. I’m tearing up writing this. Thank you, thank you, thank you. Thank you for your vulnerability, for your powerful message in such few words. This disabled queer is feeling all the things. This is also something I have observed with friendships as well. Will never, ever forget when the mother of an acquaintance came up to me and praised a friend I was with–what a good person they are for hanging out with me! Here, have a cookie or two! The pain of comments like this, of expectations that are so sneakily placed on disabled people who are with abled partners or just spending the afternoon with an abled friend is nearly impossible to describe. It’s sharp and searing. AS, please keep publishing such powerful disabled perspectives! We need more of this!
My heart! Thank you very, very much. :)
AS and the world needs More Carrie! This is amazing and affirming and just so much of what is in my body, head and heart as a crip dyke. Thank you.
I fucking adore you Carrie. Thank you.
Thanks for writing this
This is perfection and exactly what I needed to read. One of my friends has cerebral palsy and honestly, if she doesn’t ask for help I don’t fucking offer it. On a related though different note, it’s been a helluva journey figuring out how to navigate my mental illness in relationships and friendships. Do I apologize every time I have an episode? How much do they actually understand about it? Do I push them away? Do I lean on them? Do I hide everything and treat them like they can’t handle it? Do I take on the full burden of educating them and comforting them when I feel bad? It’s taken me a long time to get that having a functional relationship will require, on my part, blasting through stigma and silence and being up front about what I need. On their part, not being an uninformed asshole is genuinely a good start, lol. And I think there is a level of emotional maturity and understanding that I require from my partners up front in order for it to work.
Thanks so much for this. It’s so hard to put some of these things into words— The whole thing about not claiming to (try to) ‘see past’ my disability, because that disability is an inseparable part of “me”, no matter how troublesome or problematic. And, “understand disability as part of my value rather than a caveat on it.” is just perfect. —so thanks for putting these into words I can share.
this is beautiful. such a graceful and fierce response, i hope to emulate it someday
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.
This is exactly how I feel about being autistic. Thank you so much for this piece. It gave me a lot to think about, both as an able-bodied person and as a disabled person. I love your writing, and I hope to read much more from you here.
Preach, preach, PREACH!
Thank you for calling out the impulse nondisabled people often have for ignoring disability (it’s like we’re in the color blindness era of disability), or worse, condescension.
I’m a nondisabled queer cis woman dating a straight cis man who uses a wheelchair as the result of a spinal cord injury, and it’s crazy how often people whisper to me “Does he need help?” or ask how we have sex. And I’m sure I’m only getting a fraction of what he gets.
His disability is an important part of who he is—it’s not everything and it’s not nothing. I see it, I see him, and I adore all of him. And for the record, it’s never felt like something to overcome in our relationship—do you have any idea how useful shower seats are for shower sex? Yeah, they should sell them in Good Vibrations stores across the nation.
Oh, and highly recommend listening to this incredibly vulnerable and amazing podcast on sex and disability: http://deliciouslydisabled.podbean.com/e/how-does-it-feel-1459183408/