Zara the zebra's birthday arrived, and her friends surprised her with a marbled cake, black and white frosting swirled together. But Zara looked puzzled.
"What's wrong, Zara?" her friend Zane asked.
Zara sighed, "I've always wondered if I'm a black zebra with white stripes or a white zebra with black stripes. This cake... it's making me think about it again."
Zane chuckled, "Where do you get all your ideas, Zara? Today, it’s your birthday, just enjoy the cake."
Zara nodded and took a bite. She realized that the colour of her stripes didn't matter; it was the friendship that counted. As she laughed with her friends, the stripes swirled and blended, celebrating life, friendship - and, of course, birthday cake.
Activism, especially in the realm of disability rights, can be an incredibly lonely path. I've often felt like a solitary voice crying out in a world that doesn't always seem to hear or understand. Friends and family, with the best of intentions, may not fully grasp the depth of my feelings or the sense of urgency which drives me to continue the battle for this cause. Each of us has lived with their own experiences - we care deeply for others, but can only try to imagine how the world feels for another person.
My anger at injustice, my frustration with slow progress, and my passion for creating a more inclusive world all intertwine into a complex emotional tapestry. The feelings are coloured by personal experiences, blended with experiences of friends, colleagues, fellow activists, the countless stories I have heard, the countless people who over the years have turned to me for help or advice.
While these emotions fuel my determination, they also contribute to the sense of isolation, since I can so rarely express such feelings openly. Especially for a woman, expressing emotion can be taken as a sign of weakness, or of somehow being less professional. Sometimes also, the emotional investment in the cause of disability rights leaves me wondering if my activism is maybe partly a way to cope with the overwhelming emotional burden of living with a disability? But why should we trust people who do not seem to care, and leave the important decisions to those who seem to lack empathy? Can we truly be professional if we do not deeply care about the impact of our work and actions?
To advocate effectively, one must often make difficult compromises. At times, such compromises can feel like betrayals of my core beliefs and principles. I am unhappy when persons with disabilities are “included” only as tokens, yet sometimes attend convenings where my own presence feels like tokenism. I praise efforts that are manifestly inadequate, out of a belief and hope that this will lead to more substantial progress in the longer term. But am I compromising too much of myself, my values, or my identity in the pursuit of change?
Like Zara the zebra I ask myself questions that will not find an answer. Am I an activist out of necessity or desire? And would this make a difference to the choices I have made in my life? Have I compromised because of necessity, or would I act differently if I were driven by other experiences, other emotions? Would I even be an activist if I had never experienced hardship and humiliation myself?
Being the person that I am, advocating for the rights and dignity of persons with disabilities is not a job I can simply leave at the office at 5pm. Whatever I do, wherever I go, and no matter in which capacity I act, the fear of being left behind will follow me. The fear that no one else will care about the challenges we face as persons with disabilities if I don't speak up. The fear that the world will continue to perpetuate barriers and discrimination unless I advocate for change. This fear drives me to persist, even when the path feels lonely and the compromises are painful. And despite the difficulties and doubts that I feel when barriers pile up, this path has also given me the privilege of fighting alongside some amazing people - courageous and caring warriors for change – you, my friends, with whom I can share every colour of my emotions, and who I invite today to share this virtual birthday cake.
Chavia Ali