I am looking forward to attending the UNICEF Speakers Series event today with Joyce Rey. The focus of today’s presentation is “reaching the most marginalized – children with disabilities”. The presentation will be by Cara Yar Khan, UNICEF’s Disability Specialist in Haiti. Kahn herself is suffering from a debilitating disability. Please read her story below. I know today’s event will be one of inspiration and gratitude.
Resource Mobilization Specialist at UNICEF Haiti Cara Elizabeth Yar Khan was diagnosed with hereditary inclusion body myopathy (HIBM) in 2007. HIBM is an extremely rare degenerative condition that affects the entire body. It typically leads to severe incapacity within 10 to 15 years of onset.
With no approved treatment or cure, doctors advised Ms. Yar Khan to stay home and prepare for what was to come – a life of serious physical inability.
Ms. Yar Khan had other plans. She went on to work for UNICEF in Angola and later was called to her current position in Haiti, where there was a need for further support for people with disabilities.
Empowered by then-Representative Françoise Gruloos-Ackermans and UNICEF policy in support of hiring persons with disabilities, she arrived in Port-au-Prince in November 2011.
Five years after her diagnosis, Ms. Yar Khan has gone from a slight limp to significant muscle loss in her legs, arms, neck, hips, and back. These days, she uses braces on both legs and two canes to walk. She can´t lift heavy loads and cannot carry a notebook to a meeting or a glass of water to her desk. If there is even the slightest breeze, she needs to lean on someone to walk.
At UNICEF Haiti, drivers bring Ms. Yar Khan water in the morning. The Representative’s executive assistant accompanies her to the bathroom when it is windy. A workstation has been provided for her that does not require her to climb stairs. Waiters at the self-service cafeteria bring food to her table.
“It was a huge relief to be offered help without having to feel as if I was imposing on the office and my team,” she says. “These simple accommodations and the kind of help my colleagues show me every day let me focus on my job and perform with dignity. Their positive attitude and open engagement make all the difference in my workday.”
For her own part, Ms. Yar Khan cooks massive Indian feasts for her friends, helps them learn Spanish, and is always there to support them. She has also become the Disability Focal Point in the office.
She still faces stigma and discrimination on a daily basis. Instead of being discouraged by it, Ms. Yar Khan uses it as motivation. “It makes me want to get out there so people can see a young woman with a disability that is fully engaged in life,” she says.
“Let people see me struggling, slowly but surely, to get up the stairs, let them stare and wonder how is it that I might be at a public event on behalf of UNICEF and realize that people with disabilities are a powerful and dynamic community, one I am very proud to be a part of, just as proud as I am to be a part of UNICEF.”