When I was around 4 years old, I was watching “The Little Mermaid” with my mom. We had reached the final scene of the movie where Ariel and Eric are getting married. All of the sea creatures Ariel had befriended, such as her best friend Flounder, celebrate her love with her. My mom jokingly asked me as we watched the credits, “Ashley, will Flounder be at your wedding?”
“No, I am not going to have a wedding,” I answered simply but firmly.
My mom immediately became confused. After all, most young girls dream of their wedding day – especially with the way all the Disney movies I was obsessed with romanticized them. “Why will you not have a wedding, Ashley?”
“I don’t think anyone would ever want a wife with cerebral palsy,” I responded. Somehow, at the young age of 4, I had already received this societal message that people with physical disabilities do not find their Happily Ever After. I was already convinced I was not worthy of anyone’s love.
This happened nearly 20 years ago, and yet the message still haunts me like a looming shadow just over my shoulder. I still worry about whether or not my future girlfriend will love me once she understands the extremity of my disability – of just how much it already limits my capabilities and how much it will continue to do so as I get older. I worry she will never be attracted to my body that trembles with spastic muscles. I worry she will be repulsed by my disability in the same way I can be.
Whenever I go on a first date, I slightly dread that talk where I have to explain what my disability is – and the way my date’s eyes carefully scan my body, as if looking for it. Whenever I have sex for the first time with someone, I am weary of what my muscles will do and of the possibility of my muscle spasms turning them away. I still have work to do with my self-esteem after nearly 24 years of living with cerebral palsy. How can I expect someone else to see my beauty and worth in a significantly smaller amount of time? But through being in various relationships, I have learned what it means to be in a relationship with someone who has a physical disability, specifically cerebral palsy.
Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you recognize that their disability is a part of them, nestled within their muscles and bones. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.
It means you hold them when they are having muscle spasms or when their joints are
on fire. It means you walk a few paces slower than most other folks do so your partner does not have to walk alone. It means you are with someone who may sometimes loathe what their body does to them, who may be ashamed of what their body looks like – and you cannot overlook that.
Loving someone with a disability means you understand that nothing in life is constant – including our own bodies and very beings. We are always changing and weakening. But when you are dating someone with a disability like cerebral palsy, those changes may happen at a more rapid pace, and loving them means you are attracted to their body during every stage.
Loving someone with a disability means you may be their advocate. It may mean you need to jump on a subway ahead of your partner so you can reserve a seat for them in the crowded car while they are still a few paces behind and boarding. It may mean you sometimes help your partner do daily tasks like cutting their fingernails or opening cans. It may mean you help them find accessible entrances and places to sit, and offer an arm when they need to go up or down stairs. It may mean you fight to make places accessible if they aren’t yet. It may mean you massage their limbs while you have sex so they do not cramp up. It may mean you remind them often of how wonderful their body is despite their limitations, even when they do not see it themselves. It means you become a physical and emotional support for your partner – just like any partner in any relationship.
Loving someone with a disability may mean you understand your own body more clearly. It may mean that you end up completely reevaluating and redefining how you understand bodies, strength, beauty and what partnership looks like. This love may allow you to expand your understanding of sex, intimacy, and co-partnership in a really beautiful way.
Most importantly, loving someone with cerebral palsy will mean something different for every person and couple. But no matter what, we are all worthy of love and marriage if that is the path we choose for ourselves. Even though we all deserve this option, many of us came to believe from a very young age that this life milestone will never be attainable for us. And it takes years to deconstruct that notion and recognize it for the lie that it is.
Loving me means you kiss my scars, help me throw away these problematic misconceptions society has taught us, and we learn and grow together every step of the way.
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