I was born with spina bifida, which means that my nerves were exposed and underwent subsequent damage while I was growing in the womb. My legs, kidneys and brain were all affected by this, so I grew up going to medical appointments as if they were just another activity.
I describe myself as an able-passing disabled woman, meaning that I can usually pass as an abled person in public. I have an independent lifestyle—I manage all my health needs, I attended college, and I do not use mobility aids or adaptive technology. But it does not take a genius to observe my limp and unusual gait, so strangers are often curious as to how my body functions.
For years, my response to these questions was unenthusiastic, to say the least. I had experienced bullying before, so I certainly didn’t want my disability to be the primary trait people associated with me. At age 17, however, I realized I had nothing to be ashamed of. I proudly claimed the word “disabled” as my own, started opening up to loved ones about my struggles and found a spina bifida community that supported and welcomed me. I finally felt that, instead of having to find my place in the world, I could create one for myself.
My spina bifida isn’t merely a roommate I tolerate—it is woven into the fabric of my life, and I have worked hard to cultivate a positive relationship with it.
These adversities helped prepare me for the challenges that would come with dating as a disabled woman. I knew I would need to consider some things more than other people do, especially my personal safety within a partnership. Disabled women face a particular risk regarding romantic partners, especially physical and emotional abuse, so my safety has always been a priority. Additionally, my daily health struggles create opportunities for me to be vulnerable and for those around me to make sacrifices out of love for me. Both can be daunting for someone who is quick to protect herself from potential hurt and disappointment.
I wasn’t surprised when my first boyfriend, whom I dated from ages 17 to 18, told me my health issues might be a dealbreaker for him. His specific concerns were my chronic kidney issues, the possibility of having a child with spina bifida someday and the overall uncertainty of the future of my health. I knew the problem wasn’t me; it was my health issues. But that didn’t matter. My spina bifida isn’t merely a roommate I tolerate—it is woven into the fabric of my life, and I have worked hard to cultivate a positive relationship with it.
Still, I wasn’t equipped to reconcile my worth with someone else’s unwillingness to be with me. How could I be a beloved treasure, created in God’s image, and yet feel unlovable?
If the Lord delights in our intricacies, who are we to deem anyone unworthy of the love for which we all yearn?
In my early childhood, I simply assumed I would never get married. No one directly told me I couldn’t, but I didn’t know many disabled people in happy, successful marriages. The media never portrayed disabled people in a positive light. It seemed that, according to TV and movies, we were always the brunt of the joke—never successful, fulfilled individuals.
These factors planted a seed of self-doubt regarding my desirability and worthiness. I could not imagine someone loving all of me: my mind, soul, corny jokes, leg weakness, kidney issues.
My wounded self-image inevitably found its way into my first few dating relationships, where insecurities and trauma revealed themselves like never before. On several occasions, old wounds of mine were brought up by hearing that my health issues were a dealbreaker. Other times, boyfriends would say something insensitive about my limp before realizing that it would be hurtful to me. I strove to channel these experiences to become confident in my inherent worth, but this journey did not come without pain.
We all want to protect ourselves. It is especially frightening to let someone into your complex array of medical issues, knowing they very well might walk away.
Blessed Chiara Luce Badano's lovely words resonate with me: “I have nothing left, but I still have my heart, and with that I can always love.”
But freeing myself to be fully known was one of the most fruitful decisions I have made. The ache of rejection has strengthened my resolve to keep my worth at the center of everything. After all, the Lord would not allow the branches to be crushed in the vineyard unless he was making new wine. Each disappointment has led me deeper into the heart of God, whose love is made perfect in my imperfections.
I recently came across a tweet addressing inter-abled relationships, which cited several articles dealing with the issue. These articles all had a common theme: the ending of a relationship because a disabled partner was supposedly burdensome to his or her abled partner. The overall notion was that we as a society should empathize with those who choose to leave their partners for such a reason. Suddenly I was faced with this notion of unapologetic ableism in a form more powerful than I had ever encountered it, and I was overcome with sadness.
As a young woman whose future is still unfolding, I am continually learning how to cope with this normalization of discarding human beings. This can manifest in many ways, from abandoning loved ones because we feel they are too burdensome to robbing them of opportunities to pursue their dreams in the workforce to leaving disabled people out of the movement working toward inclusivity. What does it say about our culture when, amid a revolution of social justice and minority inclusion, rejecting a person because of their disability is validated and even encouraged?
As Catholics, our duty to uphold the dignity of each person demands that we see them for who they truly are, not for what we wish they would be. Like anyone, I have passions, flaws, joys and struggles. These complexities are part of what make us human. If the Lord delights in our intricacies, who are we to deem anyone unworthy of the love for which we all yearn?
Over the last few years, I have grown in love for Blessed Chiara Luce Badano. This young woman, born in 1971 in Sacello, Italy, battled an aggressive cancer before her death at age 19, radiating the joy and passion of Christ through her suffering. I resonate with her story not only for our similarity in battling illnesses but in her perseverance in completing the work that God had begun in her. Her lovely words resonate with me: “I have nothing left, but I still have my heart, and with that I can always love.”
Through our human weaknesses, through temptations to doubt our goodness, Christ reveals his Sacred Heart to us and unites it with ours. Until our hearts stop beating, though we are imperfect, we can always love.
