I have set an intention for February of self-love and acceptance.
I am someone who has constantly struggled with confidence. Take a girl with a disability who is pretty but not stunning and could use to lose a few pounds and you have a serious case of self-depreciation. However, after some major digging, I have realized that my biggest insecurity has always revolved around my disability.
Let me set the stage for what it is like to live with a disability. People with disabilities are often seen as less than, “half-human.” A few years ago, a teenager with my same disability made the decision to end her life and throw one big party before doing it. She wasn’t terminally ill. She wasn’t knocking at death’s door. She was, what some might call, severely disabled. Her story went viral and people spoke of her bravery, for killing herself. Now imagine the story said, “A teenage girl made the decision to end her life and throw one big party before doing it.” Would anyone call her brave? Would anyone donate money to her party? Because she had a disability, this behavior was not only seen as acceptable but applauded by the masses.
Here is another instance. There was a very popular book-turned-movie that was a love story involving a paralyzed man. Despite falling madly in love with a woman, he decided to end his life because he couldn’t go on living with a disability (Yay for interabled relationships being featured in Hollywood! Wait, he did what?––Yea but really.) Some stories end this way. This is heartbreaking when it happens. But what it is not is brave or, as the movie advertised, “living boldly.”
People with disabilities are seen as brave or living boldly when they leave their houses and “do something inspiring” like ordering bad coffee at a skanky diner. They are also seen as brave if they choose to “end their suffering” and die.
These are the ideas that have haunted my existence. Let me rephrase that, these are the ideas that have held me back from accepting who I am. Because I have a shameful secret––I grew up thinking people with disabilities were less than but that I was, somehow superior. In my mind, I walked. I lived a “normal” life. I avoided others with disabilities because they would remind me that I lived in a world of illusion. I would then spiral. “Oh god! I’m just like them! I am disabled.” I am 36 years old and still, to this day, avoid full-length mirrors and pictures taken from more than neck up. Because I have always believed that my body is lacking, that the whole me is unattractive, that the way I move is “painful to watch.” I avoided seeing it, I avoided documenting it.
I went to a house party once as a teenager with my parents. When we were leaving, my dad had to help me get my chair down the threshold step. A woman watching turned to my mother and said, “I know it must be hard” with a sympathetic look. Well, shit, lady, I was just congratulating myself on sneaking a glass of wine at the party, but now that you mention it. My life should be hard. I’m not supposed to be happy. Every second of my day is filled with suffering. That is what this woman was implying. I cried the whole drive home (but part of that was because I was an anxious teenager who just drank a glass of wine).
I hate that she got in my head. I hate that I let her get inside my head. I hate that I didn’t turn to her and say, “Well your son is an entitled asshole who sells Adderall out of his locker at school. Now THAT must be hard.”
I can’t tell you how many amazing vacations I ruined or killer parties I wasted by letting these thoughts seep into my brain. “I would be so much prettier if I could walk. No one wants me around. I am too much of a hassle. I am never going to have THAT life.” I went to a freaking penis museum in Miami and, instead of posing for a picture with a ginormous penis chair, slunk away in the corner and avoided my reflection. How often does an opportunity like that pop up?
At some point (honestly much later in life than I should have), I started to get fed up and tired of feeling this way. I thought there has to be a better way. So, for the first time in my life, I reached out to the disabled community. I read every article followed every Instagrammer, watched every vlog I could get my hands on. For the first time in my life, I had so many “Oh my god! Me too!” moments around living with a disability. I didn’t feel so isolated. I felt seen and acknowledged.
One person I found was Tess Daily (look her up, follow her, love her). She is a fashion and beauty influencer who also lives with SMA. I was hooked. I watched every video, looked at every picture. I thought she was stunning (because, honestly, she is). Then I noticed the familiar tilt of her head, the way she talked, the shape of her body. I saw myself. And things shifted ever so slightly.
Then I read a book called Strangers Assume My Girlfriend Is My Nurse by Shane Burcaw. Shane also has SMA and spends part of his time speaking with school children about living with a disability. A common question he gets asked is what would he do if he could walk. His answer––he would live his life the same way, just walking. He did not need to be able to walk to live the kind of life he wanted. He is already living it just the way he is.
I need to take a moment because, when I read this, my whole world flipped on its axis. I realized that I have always thought that I could never fully live the life I wanted because I lived with a disability. In some ways, I never thought my desires were attainable so why even try? All this time, I have been holding myself back. Because the reality is that what I want in life is fully and 100% attainable. It is going to be difficult, probably way more difficult than it would be for an able-bodied person, but it is possible. In order to make it happen, I first have to see my whole self, accept my whole self, and love my whole self.
So here’s to February! No more feeling ashamed or hiding who I am. I see me and I am stunning! (Ok maybe I’m not there yet but I’m driving in that direction.)
