Disability Pride Month |Cara Yar Khan’s Story
July is Disability Pride Month and I, for one, am out, loud and proud. Like many of my peers with disabilities, disability pride is as much about the celebration of our lived experiences and our vibrant community as it is about raising awareness about our daily struggles. We are not victims. We need not be pitied. Our impairments are not the root cause of our exclusion, rather it is societal barriers (attitudinal, physical, institutional, etc.), big and small, that are disabling and keep us from being fully included. I grew up the first 30 years of my life without a disability, and in the past 15 years, I have done a 360 in how I think, engage and see myself as a woman with a disability (my preference is first-person language but I have started to also use identity-first language like disabled) whose identity has a rainbow of intersections, all of which play a role in my unique experience. What I am about to share is very much a personal account of living with a chronic illness and resulting physical disabilities. That’s not to say that other people with disabilities have not had similar experiences but we must always remember that there is no one-size-fits-all story when talking about the largest minority in the world of more than 1.3 billion diverse people who intersect every other dimension of diversity in every corner of the world: race, gender, sexual orientation, age, body size, level of education, socio-economic class, ethnicity, religion, nationality, culture, language and residence, just to name a few. Disability is the only minority group that every single human being can be a part of, and will experience at some point in their lives, for some period of time. That’s why I like the way one of our movement’s most iconic leaders, Judith Heumann, the protagonist of Netflix’s Crip Camp, refers to human beings as either disabled or non-disabled. Here is my story. Born in India and raised in Canada, I grew up non-disabled, the eldest daughter to an Indian Muslim-turned-Atheist father, an English Anglican mother, and a Chinese Buddhist step-mum. We predominantly speak English at home, but none of us say “eh”. I attended a Catholic high school (for the uniform) and our family gives presents for Christmas, Eid, and Lunar New Year. In my career with the United Nations, I’ve lived in ten countries on five continents. I speak a puzzle of several languages and hope to learn more. All of this variety has given me many teaching moments to experience different ways in which people eat, pray, love, and live. Universally, what we all have in common is that people just want to live a decent, safe, and happy life. In my late mid-twenties, during the months moving from Ecuador to Panama, I began to experience a series of inexplicable falls. Honestly, I thought it was my high heels, unable to manage cobblestones and broken pavements. Only a few years later, after too many doctors and even more tests, I was diagnosed with a rare orphan disease, a recessive (from both parents) genetic condition called hereditary inclusion body myopathy (HIBM), also known as GNE myopathy. It’s a progressive muscle-wasting disease that affects all of my 650 skeletal muscles from head to toe. HIBM is very rare. In the United States, there are less than 200 people, of all ethnicities, diagnosed and 2,000 worldwide. To date, there is no proven treatment or cure, and within 10 to 15 years of its onset, HIBM typically leads to severe incapacity. I’m 20 years into the progression and on-set quadriplegic, which is why I use a power wheelchair, affectionately known as Khaleesi, after my favorite Game of Thrones queen! When I am out in public, zipping around in my pink bedazzled Khaleesi, without fail a child will see me and is totally gobsmacked (British word for utterly astonished). Their eyes widen in awe as they point their little fingers at Khaleesi’s very cool wheels and exclaim out loud, “What’s that?” or “How come that lady drives that?” or “Can I have a ride?” The same thing used to happen when I previously sported a bright gold walker. The children’s excitement and curiosity are apparent, not to mention adorable. Unlike the innocent exhilarated kiddos, the adults accompanying them are instead, mortified! “Oh no honey, don’t look. Get out of the way. That’s not nice. Leave the poor lady alone,” they reply. And the hope of a potential ride on my very cool wheels drains from the poor little one’s face, along with my joy at their fascination. These interactions beg the question, if kids think I’m cool and want to check out with my assistive aids, when is it in our mental and social development that we begin to attach stigma and prejudice to people who appear different than us? Unfortunately, my experience tells me it’s taught to us by our parents, caregivers, and teachers— or at least that’s where it begins. Think about it. Kids are asking their simple, honest, curiosity-driven questions, which have no mal-intent or bias. But then an adult tells them to hush. This tells impressionable children that there is something wrong with not only their questions but also with me. There must be something terribly embarrassing about me or my condition if they’re not allowed to talk about it. My personal preference is that you tell the child honestly that you don’t know why I use a wheelchair and encourage them to come ask me their question themselves. I would be delighted to share. My confidence and pride have taken time to evolve. When I was first diagnosed, it took me five years to officially disclose (or declare) my disability to my employer. I was afraid that knowing the road that lay ahead of me, they would question my capacity to manage, and I’d lose my job. I was working in countries where polio had been common, so when I overheard someone say that they thought