The realities of a doubly-disabled relationship

A look into the strength and challenges of two people with a disability being together.

By LILLY GROSSMAN
(Lara Graves / Daily Trojan)

When two people with a disability fall in love, it’s not a tragedy, compromise or some inspirational story waiting to happen. It’s just love — messy, beautiful, human love. The world, however, doesn’t always treat it that way.

People sometimes ask my fiancé, Nick, and me questions rooted in fear or assumption like “How do you take care of each other?,” “What happens when one of you needs more help?” or “Is that too much pressure for both of you?” Such questions often aren’t coming from curiosity, but rather from the belief that two people with disabilities can’t possibly sustain a relationship unless one person is non-disabled and can “carry the weight.”

In reality, however, love doesn’t work like that. Love is about choosing each other on the hard days, not just the easy ones.


Daily headlines, sent straight to your inbox.

Subscribe to our newsletter to keep up with the latest at and around USC.

Nick and I both have a physical disability. He was born with spina bifida, a congenital birth defect which causes the spinal cord to either not fully form or be disconnected from the lower half of the body. I have a rare genetic movement disorder that presents similarly to cerebral palsy. We both use wheelchairs to get around.

Nick is more medically fragile than I am, meaning he has more hospital visits and infection scares than I do, but he is more independent day-to-day. He can drive, cook and get himself ready for the day. I need help with the physical aspects of daily life, such as getting dressed, cooking, driving and going to the bathroom. Our needs are essentially opposite.

Between the two of us, there are numerous doctors, medications, routines, exhaustion and a lot of logistics to deal with. There is also tenderness, along with a ridiculous sense of humor, shared values and a deep, steady loyalty that isn’t performative. We show up for each other because that’s what true love looks like for us and our relationship.

We have both internalized the idea that we’re either “too much,” “too complicated,” “too dependent” or simply too different from what our families or society expected. That feeling unfortunately doesn’t just go away overnight and can still pop up occasionally, even after finding a partner who accepts you fully.

Sometimes I catch myself wondering if I’m asking for too much when I’m tired or need help with basic tasks. Nick often wrestles with feeling like he has to be the provider, protector and the one who holds it all together, even when he’s recovering from a major surgery like his recent kidney transplant.

The pressure to appear capable is real, but we are learning that being capable does not mean being invincible. It means being honest, flexible and loving each other with our disability.

People always want to know, “Who takes care of who?” The answer is that it honestly depends on the day. Sometimes he’s the one managing the details, sometimes I’m the one holding us down emotionally and sometimes we both fall apart and just sit in the mess together.

We’re not trying to be each other’s saviors — we’re trying to be partners.

We are also constantly navigating systems that were not built for people like us to thrive, such as medical systems, transportation, housing and employment. When both partners have a disability, the fight to be seen as a “functional” couple is even harder.

One notable hardship is that Nick and I made the decision to postpone our wedding last summer due to him having kidney failure and starting dialysis early last year. Deciding to postpone our future was not something that either of us wanted to do, but it ended up being the best choice we could have made given our unique situation.

Nick has since received a kidney transplant and is having an amazing recovery. The majority of young people, however, are not worrying about whether or not their health will prevent them from celebrating important life milestones. The possibility of losing my person before even starting our lives together was an ever present thought in my mind throughout all of last year.

Despite all of the challenges, we’re figuring it out. We make our own routines, communicate, mess up and laugh a lot. We know that our love doesn’t have to look like anyone else’s idea of what love is. We know what it means to choose each other.

There is also a kind of closeness that comes from shared experience. Nick and I don’t have to explain why certain comments sting or why we’re tired after simple errands. There’s an unspoken shorthand, grace and a mutual respect that comes from surviving in a world that continually underestimates us.

Being in a doubly-disabled relationship doesn’t mean it’s harder, it just means it’s different. We’re honest about what we need and continue to build a solid foundation of communication and care from the beginning since pretending to be fine was never an option. Our relationship is built upon unconditional love and the unwavering belief that we will overcome anything as long as we’re by each other’s side.

To anyone who sees two people with disabilities in love and thinks, “That looks hard,” you’re missing the point. I implore you to remember that what looks hard to you is just a regular Tuesday to us; what you might call “brave,” we call “being in love”; and what you consider as one-sided is actually deeply mutual affection.

ADVERTISEMENTS

Looking to advertise with us? Visit dailytrojan.com/ads.

© University of Southern California/Daily Trojan. All rights reserved.