Romance Based on (Dis)Ability
Growing up reading Anne of Green Gables and watching Cinderella I was such a romantic young girl that dreamed of being swept off her feet one day by Prince Charming. It was all I ever wanted and many trips to Disney as a young girl reinforced the idea of charming dances, beautiful dresses, flowers in my hair, and someone to hold my hand through everything.
After losing my leg I would climb a tree in the middle of the summer and sit out on a limb as long as possible completely engrossed in my romantic books and daydreaming about what Prince Charming would be like for me. Of course as the sun would set and I would need to crawl out of the tree using my arms and not legs I would snap out of it and realize that being disabled didn’t fit into the fairy tale world of romance. Heck, it didn’t even fit into the real world I saw around me.
Watching a neighbor girl whisper with her boyfriend and hold hands, share secrets and take long walks I would rub my head where my new hair was just growing back in (I had been bald from chemotherapy) and then twirl on the way back to the house as I imagined long beautiful locks and a ballroom gown. I secretly would dream of Beauty and the Beast and think if I could just find a beast somewhere that he would think I am beautiful just the way I was and would accept me and love me.
The thing was, I knew it was all in my head. I really believed that I would never have anyone to share with. I heard an adult speaking about me one night and they had said, “Look at her, who would want her? She will never find anyone!” Deep inside I truly believed that the ugly little bald-headed girl that I was would be alone forever. Still, I could dream, couldn’t I?
Now that I am married I want to explore some of the ways that romance is different with a disability. It doesn’t mean that it is better or worse but it certainly doesn’t line up with what our society sets as a standard.
Being disabled means I don’t get to hold my husband’s hand when I am walking. My hands are on my crutches and even when I wear my leg my balance is too imperfect and it becomes tedious for me. Likewise, my husband cannot walk with his arm around me because it will trip me or throw me off balance just the same. I don’t know what the closeness of walking arm in arm with someone would be. When he places his arm around my waist I have a plastic leg piece there and cannot feel his touch at the small of my back, an intimate touch I have heard described by so many friends as being wonderful. Being disabled also means that I don’t have the luxury of dancing and free movement that many couples can share. The spontaneity of a spouse gripping you up and dancing about the kitchen or a brief twirl as you pass in the hallway is something I have never experienced. As a matter of fact the freedom and spontaneity that so often define romance in our thinking is not much an option when you are hauling around a disability. Typically my days need to be planned around how I feel and how my body is reacting that day. It will depend on how long I can/will wear my prosthesis and how much walking is entailed. There is so much planning that goes into my day so when it comes to sweeping me off my foot or surprising me my husband is usually stumped (pun intended).
Often times in public with people staring at us and gawking/pointing/commenting I feel much more an object or animal than a person. It definitely doesn’t make me feel like a woman that is being appreciated for her beauty and charisma as her husband is affirmed in his choice. Haha…nah…I usually walk in public places with my head down just to avoid the inevitable hurtfulness that can come from being something I cannot change. Yes, I have even dated men that were ashamed of me in public and readily admitted this to me and others. Low confidence is something that is dished out in full platter servings to a disabled woman wherever she turns in this society we live in. One repair man at my own home asked what happened to my leg and when I explained looked at my husband with a disgusted shake of his head and said, “Well…I guess if you don’t care or have a problem with her no one else should.”
When my husband goes out of his way for me it is more likely because I need help than because he is being romantic. Each meal that I don’t have my prosthesis on for I need my plate and drink carried to the table. Any stepladder work must be assisted, and carrying in groceries is exhausting for me. On a bad day I even need help carrying the laundry to the washer or vacuuming. In the smallest of ways I can need help and there are times when my husband is rightfully frustrated with my demands for him to drop what he is doing in order to help me. Another ticker on the low self-confidence sheet for a disabled woman: reliance.
So maybe it is time to change the standard of what romance is? I often feel disconnected from romance and from the feeling of being truly wooed and loved because I am so engulfed in my own situation(s). I have spent countless hours over the years crying and pleading to find ways to be “normal” according to the fairy tale stories our society is modeled after. Finally, I am starting to realize that romance for me isn’t necessarily the same as romance for the rest of the world. Now I long to see a romance novel written for disabled young girls so that they can have the idea redefined and learn what true love and romance would look like for them. After talking to my husband about this we both agreed that romance for us flows from a much deeper place; a place that goes beyond the surface infatuations.
If you ask my husband if he is attracted to me he will say without hesitation, “Absolutely!” While I do believe that he is answering truthfully the problem lies within for not grasping that someone, anyone, could truly find me to be that way with the disability I have. I’ve had 25 full years of hard evidence proving otherwise. Our intimate life and moments are no different than for any other couple in the world. If anything, my husband feels as though I appreciate him so much more because he loves me when I don’t feel I deserve his love. I do not take him for granted and do everything in my power to make him aware of that. He feels the appreciation I have for him as he loves this disabled woman takes our bond to a more substantial depth than a lot of relationships ever reach.
When I think of our romantic story the small moments come to my mind immediately. The wonderful hugs from behind, the holding hands when we pray quietly, the times we reflect on our day together and encourage each other. I think it is romantic when I am in tears and so fed up with my life and physical hardship and he stops to wipe my tears away with his hands cupping my face to tell me he loves me. I think it is romantic when he takes me to the bookstore just because it is my favorite place and then pretends to be interested in every quote I stumble across and feel the need to explain over hot chocolate.
Sure, romance isn’t always perfect for us especially when in public. There are the times that I have fallen flat on my face or back during a romantic stroll or dinner. My leg has fallen off before and I have been unable to take another step until rescued. Just earlier this year we tried to have a romantic walk on the beach together when right in the middle of it we heard a “pop!” and my leg broke. Talk about killing the romance! But that is where the laughter came in to save us. We laughed together as we worked out a solution and sat in the sand watching the waves. Maybe romance is just simply not being alone?
My husband said this morning, “I believe our romance is special because everything that we can do romantically is more meaningful to you than other women could even imagine.” He summed it up completely in one short sentence. Romance for me as a disabled woman is appreciating the little moments and savoring them. When things do go right those moments take a much deeper meaning to me than they would to anyone else. To me, the love that is in my husband’s heart as he helps me each day (no matter how much I hate to admit it) is romance. The protective glare he shoots at strangers in defense of me when we are being stared at is another morsel of romance to savor. Knowing that I could spend my whole life looking for a man to love me and never find someone to love me even close to as much as he does is romance.
As I think back I realize that Jesus has been trying to teach me this for many years. When I first read the book of Esther I felt the strings of my heart being pulled by the romance/reality of this story. Esther surely couldn’t have been the most pretty and charismatic of women in the kingdom no matter how stunning she looked. In fact she didn’t choose the jewels and adornments the other maidens chose to impress the king. She surely wasn’t in the best of predicaments being forced to live in the King’s castle and rely on him for her very life and the lives of her people. Nor was she likely to be the chosen queen at the end of her night with the King. Yet she WAS chosen and I believe with all my heart it was for way more than her looks or ability.
I feel God, My King, who knows my heart desires deeper than anyone has always tried to assure me that I am chosen and it is not based on my looks or (dis)ability. He has given me so much favor, so many “winks” and little moments in my life that allow me to smile and know they were straight from him. Whether I was sitting alone by the water writing or being rescued when my car broke down I know God himself has been romantically wooing my heart for many years as he has held my hand and stood by my side every single day.
I am so blessed to not only be a part of the greatest romance (loving Jesus) mankind has ever experienced but also a part of an earthly romantic marriage. Through my husband God has healed my heart in so many ways and allowed me to experience so many of the dreams I had as a young girl. Of course there are many more that I still have not experienced but instead of focusing on society’s idea of romance I am choosing to stick to the scripture and to what romance looks like when based on a heart of love. Again, maybe romance is simply not being alone.
Not a fairy tale romance? Well, maybe we can fix that and write our own…