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 I might have survived polio, I thought my secret was safe. No one asked why I was limping. And I didn’t say anything.
It took me several years to fully come to terms with the severity of HIBM but being forthright about my diagnosis, and all the dimensions of my identity, actually opened doors for me instead of closing them.
Not all people with chronic illnesses and disabilities want to be asked questions, nor do they want to be advocates or activists. I have chosen to devote my life to disability advocacy, partly because it is one way in which I draw strength from my struggles but more importantly, because people with disabilities are the most marginalized, excluded, underrepresented, misunderstood, and forgotten community. You would think with so many of us in the world, our life experiences would be well known and mainstreamed by now. Sadly, we have much work to do until that becomes a reality, so I am along for the ride!
Humans are social animals and a sense of belonging is hardwired in our DNA, just like the need for food and shelter. If we grow up in our own culture and always see people who look like us or speak like us, eat like us or act like us, we have a strong sense of belonging. My journey to feel a strong sense of belonging to the disability community was not an overnight success. My humanitarian career, defending the rights of children, very much guided my path to discovering the wonderful world of disability advocacy and the innovative, resilient, and creative disability community.
Even after ten years of doing this work and fifteen years living with HIBM, I am far from perfect. I often find myself doing or saying the wrong thing. Sometimes I realize I am discriminating against myself, still prey to the unconscious biases and ableist stereotypes that have conditioned us to believe someone who has a disability or is different in another way, cannot be normal, beautiful, powerful, influential, or successful. Dismantling internalized ableism, for me, starts with being honest about my self-worth and feeling proud of who I am, as I am. It takes time and dedication to reading, listening, and being proactive in finding resources. I am still learning and growing.
This journey of dismantling external and internalized ableism – practices and beliefs that assign inferior value to people with disabilities – extends to my efforts to be anti-racist and feminist. The intersections of my identity, despite checking off five minority checkboxes, (Indian, 2x immigrant, woman with a disability, from a Muslim, multi-faith and multi-ethnic family), does not capture the totality of who I am. There is so much more to us than meets the eye. And now that I know better, I feel I have a responsibility to do my part in amplifying the knowledge I didn’t know growing up, and dismantling ableism which is perpetuated everywhere we look and everywhere we go, in macro and microaggressions.
As I further embraced my role as an advocate for all marginalized groups, I began to seek new ways to represent women, immigrants, people of color, and the disability community. Our society has started to wake up to the ways in which representations of certain minority groups— particularly women, African Americans, Indigenous peoples, LGBTQIA+ and people of color – affect their inclusion in society. The same is no less true of people of color with disabilities. And yet, despite our prevalence, and the passage of the Americans with Disabilities Act – federal legislation protecting the rights of people with disabilities in the United States – we are still mistreated. We all have conscious and unconscious biases stemming from ableism. It’s a social phenomenon conditioned by how we were raised and what we were taught in school, our faith organizations, and the world around us. Dealing with bias can’t be exclusive to one dimension of difference, such as race or ethnicity because human beings are much more complex than that. The key is to catch the bias when it happens.
Five years ago my husband and I, newly married, were traveling for a UNICEF event where I would be speaking on the Global Refugee Crisis at the famous Annenberg Space for Photography in Los Angeles, a really big deal. Despite using wheelchair assistance, carrying my gold walker on my lap and wearing leg braces, two TSA agents argued that I did not “look like I had a disability” and therefore must undergo a security screening known as a ‘pat down’ standing and in private, rather than remaining in the wheelchair and out in the open. I’m happy for my pat-downs to be out in the open because I think it helps shatter the stereotype that people with disabilities don’t travel. However, in this situation, I didn’t feel like I had a choice. Because of their aggressive and rude demeanor, I was worried about going into a private room. Worse, they told my husband he had to wait outside so I wouldn’t have any help standing. Back then I didn’t know as much as I know now about my rights and ableism, so I was timid to make a fuss. We were already late for our boarding time.
With the door closed in a very tiny room, I struggled to stand with my weakened body leaning onto the wall for support, when one of the agents asked me a question with an unmistaken tone of disgust, “Were you born like this?”. While I usually invite inquiries about my condition, their tone was not one that made me want to engage. Holding back what would have been a fury of tears, I explained that while I was born with a genetic mutation the “impairment” did not manifest itself until adulthood. “Well that’s just awful” one agent proclaimed, “you sure are lucky your husband married you this way.” Then the other agent added, “wow, what a blessing he is”. As they proceeded with the pat-down, I was just dazed. My outspoken self had no idea how to respond, partly because I was confused at my unfamiliar fear and shocked they could be so rude. John was waiting patiently, already annoyed with them for taking me in, so it did not help when in loud voices across the airport foyer they both praised him to high heaven for marrying me in my condition, “We heard your story” they shouted, “you really are a blessing to her.”
John could see the discomfort in my eyes, and my desire to just get out of there, so he did not entertain their comments with a response about himself, rather a sweet word about me, as he always does. Sitting on the plane, the struggle inside me to make sense of what had happened, began to infuriate me, mostly because I was too disoriented by it all to put them in their place or file a complaint. All I could do to comfort myself was jot a few things down on a cocktail napkin:
- I am not any less of a woman, wife, companion, or partner because I live with a disability.
- I am not a victim because I live with a chronic illness or have a disability.
- Yes, I am vulnerable and because of it, stronger than you can imagine.
- Yes, I sometimes need assistance but so do we all.
- My husband doesn’t love me despite my disability. He loves me despite society’s ableist idea of what constitutes marriage material.
- People with disabilities deserve your respect, not your pity.
It frustrates me that society still thinks so little of what people with disabilities have to offer to a marriage, a job, or the community. And it infuriates me when we are treated as inferior. The intersectionalities of our identities do marginalize us which is why it’s so important that we speak out loud against oppression. I also have a responsibility to speak truthfully about my privilege as a highly educated, native English speaker from a middle-class family with a Canadian passport. I invite each of you to humbly acknowledge your privilege because you can use it as a powerful tool for good.
As a woman, I have faced discrimination throughout my life: sexual harassment on the streets and in the office, accompanied to government meetings with older colleagues who suggest I will be intimidated to perform if I go alone, and patronized and belittled by male supervisors. As a woman with a disability, I face double discrimination, infantilized by colleagues who speak to me like a child, and told to my face in one particular interview, that certain humanitarian settings would be “too much for you to handle”.
When my work brought me to the United States where I face discrimination for not only being a woman and disabled but also for being an immigrant with a Muslim surname. When John and I got married, I thought taking his family name was such an old-fashioned romantic idea. With a plan to stay long-term in the United States we thought it best that I hold both Canadian and US citizenship. At the time, I never thought changing my name would be a necessary move to avoid discrimination. In 2017, our immigration lawyer strongly recommended that changing my surname from Yar Khan to Masters would avoid prejudice. I’ve always known of the United States as the land of the Statue of Liberty that welcomes immigrants from around the world, making it a rich, diverse melting pot. As many immigrants do, I even learned the words to the national anthem before arriving, to show my respect. With my lawyer’s recommendation, all of a sudden, I felt confused and unwelcome. My Indian heritage and citizenship – which I held until the age of 17 – made me cool in school, especially in Toronto where you are often asked your ethnicity even before your name. Prior to the new administration I also had to worry about my permanent residency being revoked on the basis of my disability being a strain on the American system. As such I have never claimed any benefits or support, despite dutifully paying my fair share of taxes, We pay out of pocket for all my medical expenses, whenever we can afford them, like the ramp to get in and out of our house, my wheelchair and most recently, a wheelchair accessible van. Unfortunately I can’t drive the van because we can’t yet afford the atrociously expensive electrical hand controls. Despite these difficulties, I have wonderful American friends, loving in-laws and a wonderful husband, who have made the US feel like a second home. I sincerely hope that nothing will happen to change that.
I sometimes struggle with balancing the act of speaking openly about my own journey and towing the public advocate line. It is disappointing when some of my peers with disabilities reject my approach because it doesn’t meet their standards of the right way to promote disability awareness. Words like “inspirational” and “brave” hold negative connotations in our community because too often people with disabilities are praised or pitied for just going about their daily lives, suggesting that if we can do it with our impairments, non-disabled people have no excuse – this is what is referred to as inspirational porn. But that’s not to say that we don’t do courageous things, or feel brave as much as we feel fear and the full range of human emotions. In December 2019 I gave a TED talk, The beautiful balance between courage and fear. And the working title of my documentary film, Her Inescapable Brave Mission – inspired by the acronym of my disease, HIBM. Both the TED talk and the film titles have caused some controversy. I face criticism for using these words but I stand by my message. I have faced enormous trauma, tragedy and fear – that have nothing to do with my disability – and I have had the courage to persevere. If someone is inspired by my determination, grit and tenacity, then I hope it will motivate them to aspire to be courageous in their own lives. Having said that, please don’t call me inspirational or brave for something that you would not give the same credit to someone without a disability, like traveling alone, dating, getting married, grocery shopping, going to prom or becoming a parent. An easy way to check yourself is to ask, “would I think a person without a disability would be inspirational or brave for doing the same thing?”
While living with a physical disability, the identity that has most marked my life, has not been easy, the experience has proven to be the foundation of my success, in my career, my marriage, and in celebrating my self-worth. I know who I am. I am a smart, fearless, capable, and compassionate woman who is worthy of love. And there is so much more to me than meets the eye. The fact that I live with a disability does nothing to diminish that.
I believe having allies advocate with us, to break down the barriers to inclusion, access, equity and representation is paramount to our movement just as it is for men to be feminists and white people to be anti-racists. But it is people with disabilities who must be the leaders and voices of our civil and human rights movement. We know what is best for us. As the international disability right’s motto says, “Nothing About us, Without Us.”
We live in a world not built with us in mind. Nevertheless we persevere. And united with our non-disabled peers, we can show strength in numbers. All of us have a shared interest in living in an inclusive and accessible world. So if you see a person with a disability, don’t pity them, respect them. We should be on this grand journey of life together.
Happy Disability Pride!