In Trinidad and Tobago, a disability is definitely a barrier to success says Sharda Ramlakhan. It makes it difficult to access many schools, shops, jobs, entertainment venues, or even basic public transport or toilets in offices, she notes.An estimated 15 per cent of us–about 180,000 people–have a disability, although we don't know the numbers for sure, as no local disability census exists. The 15 per cent figure is based on a 2011 WHO World Report on Disability.
Ramlakhan is very familiar with the challenges of disability. She was diagnosed with a rare form of muscular dystrophy when she was 27. An intelligent, outspoken advocate for the rights of the disabled in T&T, she has been working with a group called the Consortium of Disability Organisations (Codo) for almost four years now; she's been its president since May 2010.
Codo is an non-governmental organisation (NGO) set up in 2001 to be the umbrella body for all disability organisations in T&T. It includes people who are deaf, blind, paraplegic, autistic, dyslexic and people who have acquired disabilities due to aging or various diseases such as cancer, heart disease, bipolar disorder, diabetes, Alzheimer's and Parkinson's.
Codo's aim is to make T&T the standard in the Caribbean for a disability-friendly society by 2016. Currently, T&T has no disability legislation; Codo has set up a legal team to help draft legislation and lobby for its enactment. Codo's mission is to lobby for the mainstreaming of education, disability-friendly public transport, and more accessible buildings.
Dealing with the challenges
Ramlakhan's own disability, muscular dystrophy, is a degenerative condition that weakens muscles over time; there is no cure. People with the disease can lose the ability to walk, speak, and ultimately, breathe.
Ramlakhan went from the shock of her initial diagnosis in the UK, where she'd been an active accounting professional, to the emotional pain of having to totally rethink her entire life. She's emerged from this challenge with a pragmatic optimism, strengthened family ties and a determination to use her time to help others in T&T live a better quality of life with their disabilities.
She's luckier than some others with disabilities, in the sense that she did not have to deal with the limitations of her disability from birth. Ramlakhan has gone from walking with a brace in 2002, to relying on a wheelchair today. She revealed, "It started in my legs. Now it has reached my arms. So both legs and arms are very weak."I was living in the UK when my disability was diagnosed," she said, "So I was catered for by their built environment. When I came to T&T in 2002, that's when it hit like a ton of bricks.
"Getting a job here was a problem. I remember going to an interview at one of the big five accounting firms, and the interviewer looked at me and thought I was there to beg. I could not have been there to apply for a job, in her mind. That's when it hit me: there are so many attitudinal barriers we have to change in T&T," said Ramlakhan.
Ramlakhan gained employment with the Board of Inland Revenue at the VAT office in Port-of-Spain for eight years as an accountant doing financial audits. She left the job in 2011 to pursue disability consulting.She explained, "Just getting around from place to place is another big problem. When you're in a wheelchair, the entire public transport system is not accessible. So our entire community is ostracised and cannot access whatever opportunities may be available."
The Government launched a new fleet of 24 specially-equipped buses last year–the Elderly and Differently Abled Mobile (Eldamo) service. A notable first step, it requires a 24-hour advance notice for service. Ramlakhan admires the motivation behind the initiative, while having some criticisms: "It makes no sense transporting just one person in a wheelchair from San Fernando to Port-of-Spain; that's not a good use of resources, and can't cater to the normal daily transport needs of a whole community.
"People with disabilities were not consulted; we could have helped by offering some advice. I think we can still tweak the service to make it more efficient."Ramlakhan said physical infrastructure for people with disabilities is very poor. Except for some recently-constructed sporting complexes, very few T&T buildings have provisions for handicapped parking, or easy ramp entryways, or wheelchair-friendly bathrooms; the problem is bad in Port-of-Spain, but much worse in rural areas, she says.
Prejudiced attitudes
Generations ago, families who had a child with a disability were often so ashamed, some would hide the child in a back room at home, excluding them from school or any kind of normal life. These days, things have improved, but prejudice remains."Sometimes, it's just the way people look at you. It can be subtle," says Ramlakhan. "If you're doing a bank transaction, [and you're in a wheelchair], people don't think you have the mental capacity to function normally...This is because people are not aware.
"They judge based on their own limited interactions with people with disabilities... As a society, we have not mainstreamed people with disabilities in our education system, so our children are not exposed to other children with disabilities, who have unique perspectives on life, and creative problem-solving abilities.
"So we end up with a very mammonist society; very materialistic, where it's all about the individual. We're bringing up a batch of children who feel it's all about them...they do their schoolwork, they pass their exams, they [are led to believe] it's all about being first, about getting the most, about being the best, it's about the individual, not the broader, wider society. There's a very poor appreciation for the human condition in our education system. People with disability are viewed as not having any value.
Ramlakhan belives we cannot continue like this. "Because of our lack of mainstreaming, we now have people who are in very high positions whohave to make decisions, who do not appreciate why their decisions should be inclusive.
"Many CEOs, permanent secretaries and managers don't know how to think inclusively, so when it comes to employment of a person with a disability, they get a lot of jitters. They just don't know. And it's not their fault. They were just not brought up in a society that promoted inclusion of people with disabilities."
Need to implement policy
T&T has dealt with disability from a charity-based rather than developmental point of view, Ramlakhan says. "Officials give a person a hamper and a wheelchair, for instance," she says, rather than address wider infrastructural and systems needs that promote everyone's inclusion. That's a global problem, where authorities have treated people with disabilities as objects of charity, medical treatment and social protection, rather than as full and equal members of society with human rights.
The United Nations Convention on the Rights of Persons with Disabilities, which came into force in 2008, is an international human rights treaty which has been a major catalyst for change. It says people with disabilities have the right to accessibility, including information technology, the right to live independently and be included in the community, the right to personal mobility and rehabilitation and the right to participate in political/public life, and cultural, recreational and sporting life.
The treaty says children with disabilities should not be excluded from compulsory free primary education, or from secondary education. Parties to the convention must ensure access to roads, buildings and information. It recommends the state facilitate the learning of Braille, sign language, and alternative formats for communication and learning.T&T is a signatory to the UN Convention, but has not ratified it yet. The Government is currently re-evaluating and updating its policies on people with disabilities.
Suggested priorities
Ramlakhan suggests the following priority list of actions:
�2 Gather statistics–do the research for a current national database on disability
�2 Improve access to public buildings and services
�2 Enact necessary legislation immediately
�2 Raise public awareness of disability issues and train staff to deal with disabilities
�2 Improve access to tertiary education for people with disability
�2 Regulate civil organisations that work with disability. For example, ensure their financial statements are audited, that they have annual general meetings, that they report accurately for any public money they receive and that they have a fair procurement policy.
"Our existing national policy on the disabled is quite good and ambitious, because it took its impetus from the 2008 UN Convention," says Ramlakhan.But she adds that any policy is only as good as its implementation. "We're not meeting our deadlines."
