Merphilus James has served as President of The National Council of and for Persons With Disabilities (NCPD) for the past two years. It is a role that he did not ask for; nevertheless, he is now certain it was his calling. James has, from the age of three, used a prosthetic and he knows first hand the challenges that come with living with a physical disability.
When he spoke to the STAR this week, James admitted he had resisted being part of the organisation for many years due to an aversion to being in the spotlight. Things changed when he was invited to an annual general meeting of the NCPD in 2015.
“I was very surprised when I was nominated to be President,” he said. “The reason I decided to take up the position was because I had long heard that once other people put their faith in you, and they call you to serve, you accept the call.”
As we spoke in his office, the Council President provided a rundown on the NCPD: It was established in 1981 to serve as an umbrella organisation that catered to the various disability advocates on island. That list includes the Saint Lucia Blind Welfare Association, the former Association for the Deaf and Hearing Impaired, the Cerebral Palsy Association, Sickle Cell Association, and various other sub groups.
The NCPD focuses on promoting policies, programmes, practices, and procedures for individuals with disabilities, and empowering the disabled community. They rely on a monthly subvention from government to the tune of EC$12,500. The subvention is the organisation’s primary source of funding, something James says the Council is extremely grateful for. The money allows them to pay full-time staff, rental costs for two offices (one in Careille and the other in Vieux Fort), and maintain and operate a vehicle which is used to distribute food hampers and donated items to clients.
Board members like James work purely on a voluntary basis. Their duties include writing project proposals, coordinating the distribution of basic food items and other sanitary supplies to the underprivileged, ensuring clients get their monthly $200 disability grant from government, creating linkages with various sponsors, and navigating all the other challenges that come with living with a disability in a third world country.
“It is very unfortunate that the reality around the world is usually that people with disabilities tend to be some of the poorest of the population,” James noted, “It’s one thing to already be poor, or indigent, but to have a disability is an even greater burden.”
Thankfully, with the help of organisations like the NCPD, there is hope on the horizon. James spoke about projects that were currently underway, including a prosthetic manufacturing workshop made possible by the Australian government. Through the initiative, persons requiring a prosthetic can purchase one at discounted cost – $3,000 to $4,000 for a basic prosthetic leg. Recently, a partnership was established with the Church of Jesus Christ of Latter Day Saints which made US$10,000 available annually to pay for prosthetic limbs for those most in need.
There was much more to be proud of, particularly the Council’s annual summer camp for children with disabilities. This year the four-day event saw the attendance of 125 kids. For many of those children, James said the outing was their only chance to get out of the house. The reality for far too many children with severe physical limitations, or emotional or intellectual development problems, was that they would not be enrolled in regular or special education systems, for financial and other reasons. For those children, the full-day camp was something to look forward to; something that would not be possible without the support of the private sector and other donors who make the camp the success it is.
According to James, one of the major goals of the camp is integration. The directors are also on a mission to incorporate more activities into the camp structure that will help children with disabilities fully explore their creative potential.
“For too long in this country we found that children with disabilities were exposed to just basic activities, like arts and craft,” he said. “There is so much more that can be done to explore their potential with technology, and music, which is why I commend the Dunnator School for their steel pan group which is made up of children with disabilities. We need to think beyond just sitting down and gluing things together, or colouring.”
Although there were triumphs, there were just as many challenges faced by people with physical disabilities. Chief among those was the issue of accessibility. Though some changes have been made in the island’s capital city in recent times, including the addition of ramps for wheelchairs and other mobility devices, users still face major constraints accessing even the most basic of facilities. Even more glaring is the absence of a Jetway on the island’s main airport.
“Imagine a person on a wheelchair having to be carried off an air plane, and they feel like luggage,” James said bluntly. “Users of wheelchairs take high offence to that. They want the freedom to be able to wheel themselves. If as a society we cater to our people first, if we’re seen as a destination that is compassionate and sensitive to the needs of persons with disabilities, it will lead to an increase in tourist arrivals, and an increase in appreciation for our destination. Access is a major problem.”
Plans in the near future for the board of the NCPD include advocating for tax exemptions for persons with disabilities, exploring options for special scholarships for outstanding students with disabilities, and engaging policymakers on the possibility of increasing the disability grant. A fair starting figure, according to the Council president is $300, as it would “allow caretakers and children with disabilities greater freedom”.
“There is a cycle of poverty that we see particularly in cases where parents have children with severe disabilities, and the parent must give up the option of full-time employment and stay at home to take care of the child,” he explained. “It’s worse when it’s a single parent. We want to combat this, and we can only do so with social protection.”
Two years have passed since Merphilus James took up the mandate as President of the National Council of and for People With Disabilities. The greatest lesson he has thus far learnt has to do with the fact that what we may think disability is in Saint Lucia, doesn’t even begin to cover the reality. “You’d understand it is such a dynamic thing,” he said. “The concept of persons often is that this person was born with a disability. The reality that an able-bodied person today, because of a stroke, because of a bullet, because of an accident, because of an illness like diabetes, could be rendered disabled tomorrow.”
He added: “When you sit and you see hundreds of children with disabilities at Christmas parties, you understand how much you’re not seeing. It is a cause worth fighting for.”