Take cover before I drop this truth-bomb: having a physical disability sucks.
I’ll wait while you pull yourself out of the wreckage and the rubble. Don’t forget to shake the debris of that mind-blowing confession out of your hair.
Now that we’ve collected ourselves, I will confess something else: allowing such loaded words to tumble aimlessly from my mouth makes me feel like the biggest fraud.
I’ve spent more than half of my life forging a path of disability awareness, advocacy and education, all in hopes of building bridges and closing wide gaps between the disabled and non-disabled communities.
I cringe just writing that sentence full of words that quantity a group of people one way and another group of people as something entirely different. These words, disabled and non-disabled, and their blatant implications that create an Us versus Them society or carelessly slap labels of Superior and Inadequate on people – when the only real, quantitative label each one of us bares is Human – are the reasons I decided, as a shy, self-conscious 15-year-old, to try and use my voice to flip the script.
I wanted my peers to understand that physical disabilities – really, disability of any sort -are nothing to be feared or shamed or judged.
A person’s lifestyle or experiences as dictated by the realities of their disabilities does not have power to determine their level of humanity. Let me say that again, differently: A person’s challenges, physical or neurological, that may present more differences than similarities between them and their neighbors, does not subtract from their God-given worth.
The fundamental differences between ourselves and the next person, the traits and the quirks that gift us with our own uniqueness, those are the priceless gems that add to our already abundant worth.
I fervently believe every single one of these words that I have written to be rock-solid truths; I will speak them to anyone at any chance I get to steal their attention.
I know what you’re thinking, “okay, so you drop a truth-bomb to get my attention and then out yourself as a fraud before you start preaching all this wisdom. What gives, girl?”
I hear you. I often confuse myself, too. I think it’s a Gemini thing, logic and emotion forever at odds.
Logically, I know that my disability means nothing in the full scope of my womanhood and in my capacities and capabilities to live a full, forward-moving life. Emotionally, though, that clarity of knowledge gets clouded by self-doubt and self-ridicule.
Every day is a tough ride on the struggle bus, getting over the high hills of insecurity and back down to the smooth terrain of believing in myself.
I’ve worked to build this blog and my social media platforms into a place to celebrate disability and differences. This world needs more equity and inclusion and less disparity and divergence. Glorifying diversity starts by empowering marginalized or minimized people. Women and people with disabilities need to feel more empowered to be influential change-makers.
This blog, and its stories of self-love and empowerment are a tiny tick in moving the needle of equality forward. I feel a strong sense of responsibility in making sure that my messages are always consistent and never insincere.
But, there are no fancy words and funny innuendos to veil and blur the hard truth: living with a disability sucks. Not just sometimes – most of the time.
I curse the air and scream into pillows on the regular. It’s my way of releasing growing frustration from years of entrapment. Before you stop reading because you can’t handle a woman with a flair for the dramatics, let me explain.
I have always felt like my brain and my body do not match. My brain is sharp, with a fast creative process and an even quicker wit. My noggin, or my noodle, is also highly active and imaginative, there is no limit to my dreams and desires.
On the flip-side, my body is slow, sluggish with pain and no matter how active I try to be there are limits, either in my physical capacities or in the accommodations to make a certain activity or place accessible to me.
There is no greater frustration than wanting to go somewhere or do something, and be able to see the dream play perfectly in your mind, but not be able to experience it in real life. There is no greater frustration than your body and its mobility challenges not allowing you to be an active participant in that thing you so badly wanted to check off your life-list.
There is an ad, for what, I can’t recall, floating around the interwebs. The picture attached to this ad is of a man sitting in his wheelchair looking in a mirror. His reflection is clearly him – same clothes on his body, hair on his head, expression on his face – but the chair is gone and instead of sitting in it he is standing on his own.
I remember staring at this picture and gasping. I have never seen an artistic rendering so accurately depict my feelings. I understood this man’s experience immediately and on a cellular level.
The picture helped me connect to my feelings of mind and body disconnects but also reflect on my relationship with photographs of myself in my wheelchair.
There aren’t many. Let me clarify. There are boxes full of pictures of me in my wheelchair, but there are only a handful of photos where my wheels are visible.
Growing up, I was always adamant that I did not want my wheelchair to show, lest the mammoth machine distract from petite me. Also, if the chair isn’t visible then it doesn’t exist. That was my thought process.
But I am no magician excellent at making things disappear. My disability will always exist, from now until the day I meet my God who made me this way. I don’t think He would ever want me to attach shame to the body that He so thoughtfully and intentionally created.
I was 30 years old, I’m 32 now, before I recognized any real feelings of contentment and acceptance for the body that I was given. I spent my life before then dissecting and cutting myself down. I thought that my curved spine and my atrophied legs meant that my body was broken and forever damaged.
I was sure no man I wanted would want me, desire me and treat me like the woman I wanted to be. I thought my body meant that I would never have the life I dreamt about, full of personal and professional successes.
These thoughts are all lies. The truth is that a disability can never own the power to diminish my womanhood and my humanity, unless I allow my differences to dictate my past accomplishments and my future goals.
I know that I cannot be an authentic teacher and cheerleader for people with disabilities, preaching messages of inclusion and self-acceptance, until I can fully accept myself, disability and all.
I was going through my phone, clearing out some pictures, and I came across these photos taken by a great friend who asked to take my picture – in a bikini, no less.
I said yes without thinking, and I promised that I would not overthink the photos when I saw them. I thought that I would hate them, and request they be deleted immediately.
But I didn’t hate what I saw. I saw a strong, in shape, dare I say sexy, woman who has worked really hard at taking care of her body and loving herself.
I am so proud of me, a chick who has been through a lot, physically and emotionally, and who has sunk to the deepest depths of self-hate. But I am a strong chick who has chosen to rise to the surface and live my life in the fiery glow of self-love.
Some days my disability still sucks, and it feels impossible to be entirely okay with playing the cards I was dealt. But then I put on my poker face. I look in the mirror and say, “girl, look at that body,” I remember that I am a Queen on wheels and I roll on.