Don’t Dis Their Ability!

Originally published on the Nation Newspaper http://goo.gl/wn8X7W

Being politically correct is ardous! We call them ‘disabled’, ‘differently-abled’, ‘special’, ‘handicapped’, ‘physically challenged’ and even ‘handicapable’ ! But what do people with disabilities prefer to be called? This question was thrown at the panellists at ‘Kuppiya’- the 2nd panel discussion hosted by the Rotaract Club of the Faculty of Arts of the University of Colombo.


Kuppiya is a Sinhala slang that exists within the Sri Lankan university vernacular, which, more often than not, is only used (and understood) by university students and the alumni. The word which, in its literal sense translates directly to ‘small bottle’ or a ‘small lamp’, is used to refer to an informal self-help group, where one or several students who are better informed of a certain subject area teach the same to the others in the group free of charge. Earlier this month, on the International Day of Persons with Disabilities, another edition of the Kuppiya was hosted surrounding the theme- ‘the disability label.’

Ishan Jalil was born blind. But today he is a Champion of Rights of Persons with Disabilities. Ishan thinks that the term ‘differently –abled’ is just sugar-coating reality. ‘If you really think about it, aren’t we all differently-abled? He asked the audience. Some of us can sing, others can dance or play cricket- we’re all differently abled! We aren’t any different. The term ‘differently-abled, suggests exactly the opposite- it suggests that we’re different, or alien. People with disabilities are not socially disabled. What is important to understand is that disability is simply a part of human diversity and society should learn to accept us for who we are’.

Ishan has almost completed in Bachelor of Arts Degree in International Relations at the Faculty of Arts. He is the President of Young Voices- Sri Lanka an organization advocating for rights of Persons with Disabilities (PWDs) supported by Leonard Cheshire Disability. Ishan is also a Senator in the Sri Lanka Youth Parliament a youth activist and a Rotaractor. Many also found out at the Kuppiya- that Ishan is the world’s first born blind oarsman!

The term 'differently abled' was first proposed (in the 1980s) as an alternative to terms such as 'disabled', handicapped, etc. on the grounds that it gave a more positive message and thus avoided discrimination towards people with disabilities. Since then, the term has gained little currency and has been criticized as both euphemistic and condescending. Ishan says that the phrase was introduced due to the influence of faith-based organizations as a good faith label but is actually counterproductive and its implications are misleading.

Samitha Samanmali is a practicing doctor at the National Hospital of Sri Lanka who is a wheelchair user. Unlike Ishan, she wasn’t born with her disability. On the 15th of February 2008- Samitha: then, a 24 year old 4th year undergraduate of the Faculty of Medicine of the University of Colombo met with an accident while preparing for the Dayata Kirula Exhibition at the BMICH.  She rushed into a temporary steel tent away from the pouring rain when the structure unexpectedly collapsed above her. Samitha was trapped between the iron rods and one pole hit her head causing severe damage to her spinal cord. Her lower body was paralyzed for life. But three years later she has now successfully completed her MBBS degree and assumed duties as a doctor.

Dr. Samitha thinks that terminology is not important. It’s up to people to decide what they prefer to be called. She thinks that what is actually important is to ensure that people with disabilities are included in all aspects of society. She reiterated that if one is determined to do something they could do anything despite any disability.

Finally, Commissioner of Human Rights Dr. Prathibha Mahanamahewa spoke about the various steps taken by the Human Rights Commission of Sri Lanka to guarantee the rights of persons with disabilities. However, he highlighted that, even though the de jure law exists, there are many loopholes in terms of implementation.  He pointed out that although the rights of persons with disabilities have been guaranteed by law, these rights are often neglected. ‘We should take steps to demolish all buildings that do not follow the necessary steps to make them accessible to persons with disabilities!’ he said.

People with disabilities include senior citizens, (soon a fifth of our population), pregnant mothers, those recovering after surgery or illnesses and injured war heroes. Groups such as women with disabilities, or a PWD belonging to an ethnic minority maybe doubly discriminated. However, even though Sri Lanka has signed the UN Convention on the Rights of Persons with Disabilities but hasn’t ratified it because of the absence of the local law to give effect to it.

In India, following historic court ruling, PWDs were guaranteed the right to vote- which is perhaps the most fundamental of all political rights. This meant that ramps were installed in polling stations, braille numbers were in place at polling booths, and members of the electoral staff were trained. Sri Lanka, however, is far behind. All important publications- including the Constitution the country should be available in braille and sign language interpretation should be made available at all national events.

People with disabilities are not passive recipients of services – they are an integral component of the workforce. 
Our panel at Kuppiya which featured some amazing speakers bore witness to this very fact.

Becoming Me.

Originally published on the Nation Newspaper: http://goo.gl/hf6CZo

Bhoomi (then Kumudu) and I studied together at our all-boys college in Colombo.  We weren’t friends, really- he was one year senior to me: but I knew of him (everyone did). While we practiced for the Shakespeare Drama Competition at the college main hall, Kumudu and his friends practiced for their Sinhala dramas for the national level competitions. Kumudu would almost always play the female lead. For us- teenage school boys, this was quite a spectacle and Kumudu and his friends would often be made fun of. They called him the ‘p-word’ (a Sinhala expletive) and all other kinds of names.  While in my first encounters of Kumudu, he seemed taken aback and clearly distressed by the unending bullying; as time passed by it seemed like Kumudu was unaffected by the endless name-calling and bullying: he even fought back a couple of times: almost as if the bullying made him stronger and more resilient. 

Since Kumudu completed his A Levels I never heard from him. 

A couple of months back, an email invitation I received from the International Planned Parenthood Federation (IPPF) through the Family Planning Association of Sri Lanka said that I’ve been selected for the South Asia Youth Consultation on Sexual and Reproductive Health and Rights. The two other young people who were selected from Sri Lanka were Chamathya from the Girl Guides movement and someone by the name of Ms. Bhoomi Harendran. 

At our first preparatory meeting at the FPA I met Chamathya first and then Bhoomi walked into the room: this tall girl dressed in saree. There was something really familiar about Bhoomi and it didn’t take me long to realize that this was, in fact, Kumudu. 6 feet tall, with long straight hair, Bhoomi looked like any other girl you’d meet at the movies or at the crosswalks.

The training in Bangkok made me understand the importance of Sexual and Reproductive Health and Rights and the need to ensure that all people are aware of and exercise these rights, they are entitled to, by virtue of birth. That one week we spent in Bangkok together also allowed Chamathya and I to actually get to know Bhoomi and listen to her story. This also allowed us to witness, first-hand, the stigma and prejudice that she experiences on a daily basis. 

Chaz Bono once said that gender is between the ears and not between the legs. Kumudu always felt like a girl trapped in a boy’s body. She grew up watching Madhuri Dixit, she wanted to be like her, to dance like her. She was her idol. As she grew up, she started nosing around her mom's closet.  She had no examples of people experiencing what she was: this only reinforced the shame she felt. Playing female roles in college productions allowed Kumudu to be herself. It was probably her inability to blend in that made her audition for drama. That opportunity to feel like being true to yourself, even for just a moment, was worth all the bullying, the hate crimes and the name calling.   Ironically, even though stages are actually built to act, for Kumudu, it was as if she was acting everywhere else, trying to please the world, and she really felt like herself only onstage.

But drama couldn’t drown the loneliness and the confusion. She was scared and felt like there was something wrong with her. 

After she left school, Bhoomi started to grow her hair and nails and wear makeup. The changes "made me feel more like myself" she said. She decided to undergo treatments and take hormones.  Soon her parents and relatives excluded her from family gatherings and finally she was asked to move out of the house. But no one offered her a place to live.

The look on the immigration officer’s face when he saw Bhoomi’s passport, the judgemental stares and flirtatious whistles of passers-by in the streets of Colombo (and Bangkok) were a far cry from the accepting and non-judgmental atmosphere we encountered at FPASL and during the IPPF training. 

People are just used to a binary of black-and-white. Looking back, I am ashamed I made jokes about Kumudu in school behind his back and I’m ashamed I couldn’t stand up for him when other kids bullied him and called names and for not making an effort to get to know this brave young person. But you can’t blame it all on them. We were all products of an education system that doesn’t even acknowledge the existence of, let alone the rights of people with non-binary gender identities

Today Bhoomi has come a long way. She is a sexual and reproductive health and rights advocate and activist trying to change societal attitudes about SRHR issues. But more than anything she is being true to herself and doesn’t have to feel like she is living a lie. Her passion, though, is to be a model and an actress (this is on the verge of coming true!) One day she will have a sex reassignment surgery- she wants to fall in love, get married and be a mother and she wants to be happy (if that’s not too much to ask for).