A Conversation with Cara Elizabeth Yar Khan
By Nora Zaki
May/Jun 26
At 25, Cara Elizabeth Yar Khan started noticing her body acting differently. She fell a lot and did not understand why. Two years earlier, she had started her international career with the United Nations World Food Program in Ecuador followed by an executive role in corporate communications for Dell Technologies in Panama. Working for the UN required a lot of travel which was made difficult due to the physical barriers she had begun to face.
For five years, Yar Khan consulted doctors to understand, through a process of elimination, whether she had a devastating disease. “Not knowing, because you don’t know how it’s going to impact your life, is the hardest bit,” Yar Khan said.
A Life-Changing Diagnosis
Then, in 2006 at the age of 30, Yar Khan was diagnosed with Hereditary Inclusion Body Myopathy (HIBM), also known as GNE Myopathy. HIBM is an incurable progressive, muscle wasting disease with only 2,000 known patients globally, according to the Advancement of Research for Myopathies. Prevalence is estimated to be higher, but most people with HIBM are misdiagnosed because it is so rare. The prognosis described by her doctor, which is now her reality, was onset tetraplegia (severe weakness of the arms, legs, and torso), and the use of a wheelchair for the remainder of her life. Today, at 49, her disease is still progressing.
While this certainly was a dramatic and life-altering change for Yar Khan, she made it clear that the attitudinal, physical, and institutional barriers she faces as a person living with a disability would not hold her back from living a full and productive life. She produced and participated in the film Facing the Falls about her epic journey to the Grand Canyon which included her riding a horse across the rugged canyon and kayaking down 150 miles of white water rivers.
She began to feel that the diagnosis was almost an anticlimactic moment. Her approach was, “Let’s figure things out.” Yar Khan admitted that she was emotional and confused when diagnosed with HIBM as a young woman, but she never had a sense of hopelessness nor tragedy about her condition.
Bringing Awareness to the United Nations
Yar Khan returned to the UN joining the United Nations Children Fund (UNICEF) in Angola in 2007. At the time, there was no protection policy for the rights of UN staff or applicants with disabilities, so she did not disclose her disability to her employer for several years. Only in 2011, when she went to Haiti, did she disclose her condition and seek reasonable accommodations with the UN. This disclosure ultimately helped her workplace dismantle barriers that had been keeping people with disabilities from participating equally.
For example, if she had to walk across uneven outdoor grounds on two canes to attend a meeting, a colleague would hold notebooks for her, as one way for Yar Khan to have some necessary tools in her meetings. Her accommodations also included adding physical steps into a 20-foot container when she and her staff worked at the end of an airport tarmac in Haiti after the 2010 earthquake. Yar Khan said these reasonable accommodations made a huge difference. They gave her colleagues a chance to challenge their own biases about what a person with a disability could contribute. And for Haitian staff especially — given their deep cultural stigma around disability — it was transformative. Over her two years there, they came to know Yar Khan not as “the woman with a disability” but as Cara, a qualified expert working hard for the rights of the children in their country.
Yar Khan has taken inspiration in her journey from several movements working for disability awareness and justice. She talked about Judith Heumann, who is often called the “mother of the disability rights movement.” Heumann, who had polio as a child, organized protests like the Capitol Crawl and pushed for the Rehabilitation Act of 1973, which laid the groundwork for the Americans with Disabilities Act. Yar Khan said that Heumann’s work spoke to the importance of documenting these movements while also recognizing the parallels between the disability rights movement and the civil rights movement.
Yar Khan is also inspired by movements such as the Black Lives Matter movement and its emphasis on ensuring that those most marginalized communities lead public demands for justice and equity. She shared that the BLM movement fighting against racism, police brutality, and pervasive racial inequality in the United States has been led by Black, transgender, and disabled women. Allyship with this movement has meant standing together and showing strength in numbers while also ensuring that Black individuals are placed in positions of leadership across the movement.
Yar Khan explained this should also be the case with disability advocacy. People with disabilities are not charity cases, and just like institutional racism, there are institutional barriers for people with disabilities that must be dismantled.
Yar Khan, who comes from a Muslim background, has worked with various disability rights organizations, including a Muslim organization called SMILE Canada that aids children and youths with disabilities in a “culturally-responsive manner.”
Conquering the Grand Canyon
Only 1% of visitors to the Grand Canyon embark on the multi-day, backpacking hike. Yar Khan was determined to become a part of that 1%, and that’s exactly what she did. In 2014, she envisioned going on an outdoor expedition that would change the way people think about adventure for people with disabilities. In 2018, after four years of planning the expedition and learning to ride a horse, she embarked off the South Rim. During the 12-day expedition, she spent four days on horseback and eight days rafting on the Colorado River.
Yar Khan wanted to prove several points with this expeditious adventure. Firstly, she believes she can do anything in spite of the many barriers that exclude people with disabilities. Secondly, and simultaneously, while she struggles daily, she is not suffering. Thirdly and finally, the best way that Yar Khan can be a beacon and example for her community of people living with disabilities is to be herself.
Biases still run deep, Yar Khan noted. For example, when children see her in her wheelchair, they are curious and ask, “Why do you use that chair?” But adults often pull them away, saying, “Don’t bother the poor lady.” That tells children there is something inherently wrong with her and with their curiosity. If adults just let them ask, Cara could simply answer, and the moment would pass naturally.
Yar Khan also wishes more people understood that disability is a universal experience. “At some point, all of us will face it,” she said. “If you have a broken leg and can’t get around, that’s a disability — it’s not just about impairment, it’s about barriers. Society needs to dismantle those barriers. And people should know that disability is not tragic. While we may struggle, we’re not necessarily suffering. And not all disabled people are sick.”
Finally, Yar Khan encourages people to engage more with disability culture by following disabled activists on social media, reading about Judy Heumann, and noticing representation in the mainstream media. She also wishes that Muslim nonprofit organizations move beyond the charity or medical model of disability. Yar Khan noted that while giving zakat is important, inclusion should be rooted in dignity, respect, and leadership by people with disabilities themselves.
Nota Zaki is the founder of MyMuslimChaplain.com, a chaplain consultation company. She also served as the Muslim chaplain at Dominican University, Bard, and Vassar Colleges.