- Little People Association Founder Dharshini Nanayakkara on making inclusivity a reality for people with achondroplasia
Sri Lanka is diverse, there is no doubting that. But, there are also segments in the society which are marginalised, simply based on looks. While most genres of persons with disabilities are now recognised and included in the diversity spectrum, there are some who are yet not that fortunate. People with achondroplasia stand tall and proud but they are just a little ‘little’. They are often discriminated against, name called, and shunned by society, to a point where they shut themselves in their homes, preferring to remain there rather than face society’s cruelty.
The Little People Association of Sri Lanka (LPA) was founded in 2019 by Dharshini Nanayakkara, a person with achondroplasia. The LPA now has 162 members, with Nanayakkara having nominated leaders in as many Districts as possible.
She was on Kaleidoscope this week, setting the record straight about persons with achondroplasia, shedding light on the often-unexplored experiences faced by human beings who are different from what society terms ‘normal’.
Following are excerpts from the interview:
What inspired you to start the Little People Association?
I began this because in other countries like the United States of America for instance, there are associations such as these for people like us, but there was nothing in Sri Lanka. Since I am a person with achondroplasia and have had to personally deal with lots of issues because of that, I wanted to have a support system to help others like me. My main goal was to form a community and place them in society to feel accepted and to show them that they are a part of our society.
What are your goals for the members of the LPA?
It is primarily for people with achondroplasia to be socially accepted as regular citizens of the country, worthy of respect and dignity. I want them to be recognised for who they are and not what they are. I want recognition for their education, talent, and abilities, giving avenues for employment both in the private and public sectors. The problem is, little people aren’t judged on their educational merit, but rather, discriminated against for their height and appearance. Because of this, they cannot get any work. This is something I have experienced and why I have such a passion for this. I’m very happy with the support given by the media for people like us. We are now out in the open and not hidden away somewhere, which has resulted in members of the LPA receiving job opportunities, mostly in the private sector.
What are the challenges persons with achondroplasia face in their daily lives?
The first issue is the name calling, especially in the Sinhala language. It is very degrading. When I formed the LPA, there was no Sinhala word or phrase for persons with achondroplasia, like there are for persons who cannot see, hear or speak. We were just called various derogatory names. After the LPA was formed, the university conducted some research and presented the term ‘mihimith prajawa’. ‘Mihimith’ means closer to the earth. Little people face discrimination from the time that they are born, through school and workplaces. They cannot participate in academics or extracurricular activities and most feel that they will either steal the limelight by being out there or that they will mess things up because they are not intelligent or cannot grasp things, which are all very wrong misconceptions. I see private schools being more accepting of persons with achondroplasia, but still, as a country, we have a long way to go.
What is the best part about your work with the LPA?
When I see my members out and about, showcasing their talents and doing well for themselves. When we have events, our members are overjoyed because they aren’t normally invited to social functions as they are not considered socially acceptable. Most of our members are poor because they have not been given a chance at gaining employment. Now, some of them are even competing in reality television shows. The fear has dissipated. They have much more confidence and are shining bright. One of our members was selected from among 1,000 contestants to be among the final 150 in a reality singing contest. When I met her the first day, she had a permanent frown. It is almost like they have a permanent grudge against society for mistreatment. But now, she is smiling, singing, and dancing on stage. Seeing these people transform from cocoons into butterflies is one of the greatest joys that I have experienced.
As a person with achondroplasia, what are some of the challenges you have faced?
When I was a child, there was a great battle to enroll me in school. The head of the primary school didn’t want to take me, so my father intervened. He asked for me to be taken in and said that if I caused a disturbance to the other children, he would take me out. I overcame that hurdle and completed my education. However, I never got the opportunities to do extracurricular activities. I loved drama, sports, debating, oratory, and speech contests. But, because of my height, I was always pushed aside. I was told that when I got on stage, the attention would be on me and that that wasn’t good. Conversely, my son who is a person with achondroplasia went to a private school but was allowed to participate in whatever extracurricular activities that he wanted. I qualified in accounting. When I went for job interviews, all the interview panel did was look at me, rather than my qualifications. After numerous failed attempts, where I was openly asked questions and told that they couldn’t hire me because of my height, I decided to join the family company.
But you got married and you have two boys. How did that pan out?
Another few hurdles, I may add. My husband is an amazing man who looks after us like gold. But, our culture is such that when his parents heard about me, they refused to give their approval. However, he stood his ground and said that he would never marry anyone but me. We did get married and then came all the advice. I was asked not to have children because there would be a chance of the baby being like me and also that I may not be able to carry the child to full term, thereby placing both my baby and myself in danger. However, my gynaecologist assured me that all would be okay and I went ahead. My first born is a child with achondroplasia but I accepted it. When my second son was born, he was what society would call ‘normal’.
What would you say to persons with achondroplasia who are afraid to be themselves?
Firstly, they need to let go of what others think and say. Get educated. No one can rob you of your education. Since many persons with achondroplasia have faced problems in school, they have dropped out and never finished their education. So, my words of advice are, ‘Don’t worry about it. You do what you have to do to get educated and if you have a problem, come to me. I’ll sort it out for you’. One of my members who had applied to get a teaching degree at the Open University was refused entry on very flimsy grounds although he had all the qualifications and requirements. Their final words to him were that even if he got a degree, he wouldn’t get any teaching appointments because of his height. I met the members of the Board and asked them what their rationale was in refusing him entry. They told me that he had special needs and would be challenged in a teaching environment. When I asked them to define what their idea of special needs was, there were no answers. The young man gained entrance. Our members face issues like this daily and therefore, some just prefer to hide rather than go through the pain.
What can we do to help this community of people feel accepted?
Create awareness and educate the society about the diversity of people. This acceptance begins at home. Children must be taught that people who are different are not to be ignored or belittled. When a parent tells a child, ‘Oh, look, there’s a shorty’, the child automatically learns to discriminate. Please don’t treat us as comedians or jokers. Yes, some of us might be genuinely funny and make very good comedians, but that doesn’t mean that we should be belittled and made a laughing stock. All performers deserve respect and dignity and if their job is about comedy, extend respect for that talent and their abilities. Very often, I have reached out to people who, unknowingly for the most part, highlight a person with achondroplasia in a derogatory manner, either with name-calling or by laughing at them on social media. When I do reach out, most have responded with an apology and taken the offensive post down, not even realising that someone was treated with disrespect with that post. People’s sensitivities are very low when it comes to little people. Our members don’t want sympathy, nor do they want pity. They just want respect, dignity, and to be treated as human beings.
What is next for you and for the LPA?
Lots of plans, but in a nutshell, I want to have a community village for little people to settle in after their parents pass away. Some haven’t been out of their homes at all and sometimes it’s too late. They’ve lived under the shade of their parents nearly all their lives and when their parents die, they are destitute. So, that’s an area I am working on. There are different versions of achondroplasia. For instance, some are only one and a half feet tall, which means that they can’t use public transport, climb regular steps, and just do regular things that most people take for granted. So, once their caretakers pass on, survival becomes difficult. The village will eventually be self-sustaining as I will teach them crafts, educate them to find employment, and give them as much support as I can for them to stand on their own two feet. I have requested the Ministry of Cultural Affairs to give opportunities to talented artists in my membership and to include them in the list of artists who get a monthly allowance from the Ministry. I want my members to get involved at the national level, to be accepted that they are intelligent and be able to contribute to the country.
(The writer is the host, director, and co-producer of the weekly digital programme ‘Kaleidoscope with Savithri Rodrigo’ which can be viewed on YouTube, Facebook, Instagram, and LinkedIn. She has over three decades of experience in print, electronic, and social media.)