By Kaelanne Jordan
At age 42, Jeanista Agard began to experience a change that no one saw coming. It was easy to ignore the fact that her eyes were somehow unable to focus while sewing buttons, until she found herself driving in the middle of the road at night. She attributed this to night blindness.
But she could not ignore the diagnosis when it came in 1979—Retinitis Pigmentosa. According to The American Academy of Ophthalmology, Retinitis Pigmentosa (RP) is a group of genetic disorders that affect the retina’s ability to respond to light, making it hard to see. People with RP lose their vision slowly over time. There is no single treatment for RP.
“As far as I’m aware, I’m the first one that got the disease in the family,” Agard told Catholic News via phone. Her son, however, was diagnosed with RP at age 52.
Gradually, Agard recalled, her vision began to deteriorate. “And one day I’m driving on Santa Cruz hill during the day, and the sun was rising. And the glare…I couldn’t see. I was terrified. I felt I could easily hit a car …. I came right home… and I never to this day drove again.” That was around 1987.
For Agard, now 85, her “most difficult” adjustment was being unable to drive as she prided herself as an independent career woman and mom of eight.
At that time, Agard worked in the Marketing Department as a Public Relations Officer at Nestle, a post she retained from 1962 till her retirement in 1988.
She shared instances of being unable to read the reports on her desk. Over time, Agard began to experience phases of vision loss including low vision. Interestingly, her children’s reaction to her prognosis was candid.
“When I had low vision, I did everything, and they said they did not recognise I was going through hardships. There was nothing for them to adjust to because I’ve always fought to be independent… I can clean and cook. And I do a great job. Except the floor, I could never get the floor right. So, it didn’t affect them in anyway…” she said. Agard has been blind since 2004.
It was while unwell in bed at home, Agard listened to a radio programme about children who were moved to the back of classrooms because they could not see. “Well, that upset me so badly. I say What! I said God, I have to go and help these children. I didn’t know how I was going to do it so I asked my cousin if there was a blind association in Trinidad so that I could help. And they put me on to PAVI (Persons Associated with Visual Impairment) ….”
Within a year, Agard was elected President for six months. During that period, she began visiting primary schools throughout Port of Spain and environs. “But the Holy Spirit had a plan for me because I decided to go to the hospitals and speak to the patients at the eye clinic,” she said.
In 2010, Agard conceived another venture—visiting hospitals: Port of Spain General Hospital (PoSGH); Eric Williams Medical Sciences Complex, Mt Hope and St James Medical Complex to talk with patients waiting to see doctors.
The endeavour continued for nine years at PoSGH and eight at Mt Hope. She would visit weekly, Tuesdays at PoSGH and Wednesdays at Mt Hope. She credits Courtlyn Taitt, senior nurse in charge of the PoSGH eye clinic and ophthalmologists Dr Boysie Mahabir and Dr George Hanomansingh, who have been a source of support “from the beginning.”
In 2018, patients at the PoSGH were evacuated and relocated following earthquakes in the country. As a result, Agard opted to discontinue her talks at the facilities.
Commenting on her years doing public education, Agard told Catholic News, she “really missed” the interaction with the public. Not wanting to end there, Agard thought of developing another programme that deals holistically with eye care—spiritually, psychologically, physically, and financially.
At the time, she felt the need to share her observations and interactions from her weekly visits at the hospital with the government. “So, very boldly, I rang the Ministry of Social Services and said I wanted to make a presentation to the minister. I did not give up. I called and called until they said ‘yes’…” It was during this meeting that the concept for a radio programme on eye care was developed.
Agard revealed she initially felt a radio programme would not have been “interesting enough” to host every week, but experience proved the opposite.
Holy Spirit Project
Aagrd’s idea of The Holy Spirit Project began two years ago in 2019. It is a government-run programme that takes place every Friday, 11.15 a.m. on Talk City 91.1FM.
Since inception, the programme has included a host of highly trained professionals, all selected by Agard, including psychologists, ophthalmologists, optometrists, dietitians, pharmacists and various ministries and government bodies, to name a few.
So why the name Holy Spirit Project?
“Well, I love the Holy Spirit. I talk to the Holy Spirit all the time. The Holy Spirit is my guide and my inspiration,” Agard, a parishioner of St Ann’s RC explained.
Past programmes included presentations from the Ministry of Consumer Affairs on shopping as a visually impaired consumer; “a very interesting” episode in which the Ministry of Agriculture shared on how to plant using limited space; Superintendent Wayne Mystar, on safety for the visually impaired, and psychologist Dr Margaret Nakhid-Chatoor who recently discussed the importance of inclusion in the classroom with the Principal of Queen’s Royal College.
She boasts, “You know I’m booked up till the end of November! Every week so far has been excellent,” she said.
To this end, she expressed gratitude to all professionals who gave their time and talent, at no charge, large and small corporations and non-governmental organisations who generously supported her ventures through supplying transportation and refreshments.
On the challenges affecting the visually impaired, Agard said, “there can be improvement all around. …there are a lot of things that are not being done with the blind. That’s the painful thing… What I do is insignificant to really and truly what the needs of people in Trinidad are….”
How should the public interact with blind persons?
Agard emphasised that when approaching blind persons, do not touch them. “Because they can feel they are being assaulted. Quietly say ‘Good morning, would you like me to cross you?’ and then they would tell you whether or not they need help. Now, you will tell them ‘touch my shoulder or elbow’. Never touch them without permission,” Agard said.
While she maintained that she is primarily focused on her radio programme, she did tell Catholic News of her plans to continue visiting schools, when they reopened.