CHENNAI: I don’t just fight for the rights of persons with disabilities. I believe in social justice and equal opportunities for everyone. This way, everyone can lead independent life...this was something I lacked when I was young,” says 40-something-old Ummul Khair, a lawyer, as she whizzes up the ramp in her wheelchair at Vidya Sagar, Kotturpuram. A person with cerebral palsy, Khair was awarded the NCPEDP-Mindtree Helen Keller Award under the Role Model Persons with Disabilities category, on Tuesday, for her contribution towards promoting employment opportunities and rights for people with disabilities in India.
Walking beside her, indulging in a conversation about her journey laced with innocence, adversities, hope, grit and grace, we observe Ummul’s perpetual sunny disposition furtively rub off on us. By the time we reach a quiet room and begin our tête-a-tête, we have a smile plastered on our face.
Cuckoo in the nest?
As she struggles to recall exactly when she was diagnosed with the condition, her forehead creases. She says that it’s “hard to say” due to the lack of awareness that was prevalent 40 years ago. “My milestones were delayed and eventually the doctors diagnosed the condition. But it was seen as a disease that needed a cure, than as a lifelong condition,” says Ummul, who was born in Tiruchy. She moved to Bengaluru while she was still an infant. The next 17 years, Ummul spent her life in her bed and her mother’s arms. “I was homebound, didn’t own a wheelchair, so my mother used to carry me everywhere. I was dependent, I craved for freedom, I wanted to go out by myself. What saddened me more was the effort my mother had to put in caring for me. She worked as a teacher in Chennai. But she used to take leave regularly, jeopardising her career to visit me and my father in Bengaluru, and care for me. My needs were always prioritised. I wonder how my brother took everything in his stride,” she shares.Though she wasn’t ostracised in a conventional way, she was never part of any group nor involved in discussions. “I was stereotyped and also treated differently in the most indifferent way,” says Ummul, who considers Hellen Keller as a role model.
Finding a way
At the turn of 20 years of age, Ummul had the urge to take breaths of freedom. Soon, she found her way and made it to Vidya Sagar, a social welfare organisation working with PwDs, in Chennai. “It was a life-changing experience. I relocated here, stayed alone, took care of myself. I was 21 years old when I went out by myself. I don’t remember where I went or what I did, but it was a rebirth of sorts,” smiles Ummul, who after joining Vidya Sagar went on to write her class 10 examination through the National Institute of Open Schooling (NIOS). “I even learned the English language. It was liberating to learn new things,” she says. She then joined a “regular school” and completed her senior secondary education. Later, she pursued a Bachelor’s degree in Sociology at MOP Vaishnav College for Women, and in 2011, enrolled at the Dr Ambedkar Government Law College to study law. “I knew studying law will enable me to help others. There were barriers that I had to cross in order to get where I am...most times, the right help and guidance weren’t available. I wanted to bridge that gap,” shares the lawyer, who is currently the coordinator of the Disability Legislation Unit (DLU) at Vidya Sagar.
No time for love
All her life, Ummul’s mother has been her support system and her moral compass. “My mother is 73 years now. I visit her once in a while, I worry about her. But I know I make her proud. I know that all her efforts in raising me didn’t go in vain. When I told her about the award, she was very happy. But she still worries about me…she asks, ‘who will be there for you after me?’” she says. Ummul has been evading this question for years. We ask her if she has ever been in love or looked for a companion for the silver years. “Yes!” she quickly says. “But I haven’t found the right person yet. I am busy with work now and my focus is on bringing about a change. As cliché as it may sound, there’s no time for love. Also, I deal with several divorce cases, so I am quite intimidated to jump into anything,” she shares.
Adventurous soul
Ummul might not have embarked on the ‘love journey’ yet, but she has other adventures to satiate her soul. From rappelling to parasailing, the artist-cum-part-time singer has done it all. Next on her list is scuba diving. “I can’t wait to check that off my bucket list!” she says.
Fight for inclusivity
Just when Ummul was basking in the joy of her newfound freedom, life gave her another challenge. “After graduating and passing the bar council exam, I was still not allowed to enrol as a lawyer because I had written my class 10 exam through NIOS,” she shares. Soon, along with like-minded lawyers, a petition was filed in the High Court about how this criterion posed as a barrier for people, especially those who are differently-abled to live their dream. “Soon, we got a ruling in our favour. But there’s still a lot to fight for in terms of inclusivity and access. But, from Ummul Khair, the innocent girl to Advocate Ummul Khair, I’ve come a long way. I learned that the key to fulfilling your dreams is perseverance,” she says.