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“I don’t want to be pitied for being disabled. I want to be a role model for others”

Just 22, Shabnam Khan from Delhi has endured heartlessness enough for two lifetimes. It all started with a leprosy diagnosis when she was in Grade 9 when she found she could not hold anything in her hands as they were shaking so badly. That was when the two pinkish spots on her cheeks she had had for long began to make sense.
The disease caused both her hands to be disfigured. The resultant stigma marred her school life and she withdrew into herself, finding comfort in just a few friends. She faced taunts from neighbours and relatives. They would pass hurtful comments like, “Looli hai, ab kya hoga iska, kaun isse shadi karenga. Yeh kuch nahi kar paayegi.” (She is lame what will become of her, who will marry her. She will not be able do anything.) What was galling was her parents’ silence. She wanted them hold and hug her, and tell her, “Don’t cry, everything will be all right.” But nothing of that sort happened to this middle child in a family of seven.
What she did have was her teachers’ support, inspiring her to rise above her situation. By the time treatment began her condition had aggravated so much that because she had lost sensation, she suffered burns on her right hand, destroying her index finger. This was on the eve of her Grade 10 exams. With great difficulty, without using her index finger, she wrote her exams. Her medicines would raise her blood pressure, resulting in occasional meltdowns. But her close friends understood.
Her father, Islam Khan, who is a property agent, pressured her to give up studies after school, triggering suicidal thoughts in her. She didn’t tell her family when she got admission in college and she had to pretend she was going for job interviews. She remembers how before her first year exams she stepped on a hot surface and her numb foot got burnt. But she wrapped it in bandages and went to college to write her exams.
Shabnam became the first graduate in her family! She passed her B.A. in political science and economics with a Second Class and is now pursuing M.A. in political science. “It might seem like a small thing to people but it is a big achievement for me,” she says.
Way back in school, she did a course in logistics and retail, offered free by government institutions. After graduation, she did a short stint at a consultancy firm, verifying documents. Then she applied in many places for jobs but was rejected due to her physical condition, particularly her hands. She didn’t work for two years. During this time, she did a computer course. Finally, through one of her friends, she got a job as a customer care executive. However, her mother, Sarifan, met with an accident and she had to quit to help run the house.
A friend told her about an NGO, Sarthak, which provides vocational courses and helps with job placement. Two months ago, she enrolled with them and is currently attending classes that teach skill development, retail marketing, communication, etc.
She is also preparing for public service exams so that she can live an independent life. Her family is still not very supportive as they feel she is too frail physically. Clearly they have not reckoned with her mental strength. Shabnam says, “When you keep getting hurt, you become tough in a way people think you are rude and don’t know how to behave. I know that nobody is going to help me but myself.”
Both her sisters are married and her younger brother, just 20 and who has a good job, is getting marriage proposals. “I don’t want to marry now; I first want to stand on my feet. Because if I marry now, they will not respect me. I don’t want to be pitied as a poor girl who is disabled. I want people to look at me and say, ‘Look at her, despite her condition, see what she has managed to achieve.’ I want to be a role model for others.”
In her free time, Shabnam helps her mother with household work. She likes to draw and watch movies or listen to music on her phone. She cannot stop moving when she hears lively music and is not shy about dancing at a wedding or a party. 
She says people ought to be more empathetic to suffering. “If you can’t help, then at least don’t hurt them. People see a nice smooth road and marvel at it but they never think or imagine how much hard work and sweat has gone into making it. That’s how life is. Everyone has to fight their own battles.”


Vicky Roy