I first connected with Jolene Dias from Margao a couple of years ago. She was an ideal candidate as a youth leader for a Global Organisation called the Global Shapers Community of the World Economic Forum that I was mentoring as Founding Curator. She was a musician and working to help promote music for children with special needs.
Then in May this year, our local parish priest had invited her to deliver a motivational talk to the confirmation students, youth on the threshold of beginning a life of responsibility as adults. I couldn’t attend the meeting due to other commitments.
Finally in July, when I entered my catechism class I was introduced to my fellow catechists and class teachers and one of them was Goretti, Jolene’s mom. It seemed like we were destined to meet. Third time lucky! I was so thrilled to hear Goretti reminisce when we were neighbours at my parents place in Margao. She recalled seeing me taking the bus to Panjim to Architecture School! She even remembered visiting our house and meeting my family.
We set up a meeting. Jolene attended mass and adoration service at Don Bosco as that was the only church accessible for her in Panjim. I met her along with other friends Tr Guilhermina Vas and Vishal Rawlley. Plans were made to invite her to Auxilium School for an investiture ceremony to motivate and inspire leaders of the school. It was a super success and the students loved her. Then she was invited by our Parish church to help with the children’s mass choir. I was keen to help her. So one day I went to her house. They had managed to find a small space on rent from a friendly lady who they met at mass at Don Bosco. When I reached her home, and experienced the routine I was shocked. The house as with all others in any place had steps and no ramp. And this is no different from all our public buildings and recreational spaces, even beaches and markets. She used an office chair of sorts with wheels within the house. And she could help herself move with ease. Then her mother would lift her and help her into the wheelchair. From there she needed help from one more person to wheel her down a newly made wooden ramp, because it had a steep slope. From there on her mother would wheel her across a 2m path onto the road edge where the car was parked. She would then lift her off the wheel chair and place her into the front passenger seat of the car. And there on the routine would follow everywhere she had to be taken. I could not sleep that night. I was wondering how her mom, her only support was managing all of this. They definitely needed help and being in the new place and city, meant that we had to be there to support them. After helping her I realised how we have all been instrumental in making her living more difficult than easy. As ordinary citizens we have simply rejected Jolene and her kind as useless, incapable and undesired as members of society. We have not been sensitive to even the needs of children, pregnant women and senior citizens or the aged. We have conveniently bracketed them as the ‘weak’, ‘unwanted’, a burden and a hindrance to our ways of life and living. As architects and planners we have been designing homes, institutions, public spaces and SMART cities with no design intent or detailing for Jolene. As teachers and institution heads we have not raised our voices to the needs of the Jolene. As doctors and lawyers we have not cared for the health and the rights of Jolene. As activists, our voices have not been loud enough to influence policy to favour Jolene.
And Jolene at one time was ‘able’ like us.
Jolene had schooled in Manovikas School following which she joined Fr Agnel HSS for her higher secondary education and then Chowgule’s for her Bachelors in Science. She was super independent, riding a bike to college and back, did all her errands, etc. In her 2nd year, she began to discover that she was constantly having falls, could not keep up with the other kids while walking and eventually learnt that she had developed muscular dystrophy. It’s a genetic and progressive disease, perhaps triggered after an overdose of heavy antibiotics when she contracted a viral fever. She was then home bound and finally wheel chair bound. But this did not stop her from overcoming the challenge. She pursued her passion for music. She taught herself to excel in singing and play the keyboards and violin. She answered the Trinity exams and began teaching music including voice training. She set up her own training enterprise called Blue Ocean Waves, 9 years ago. She loves music but more than that she loves teaching and sharing what she has taught herself. And she loves being with children. She began teaching from home. Her parents were in denial for the longest period to see her in this condition. But slowly they accepted it. She lost her father 7 years ago. And she finally got a wheel chair a couple years ago. And she began to face new challenges. Neighbours began to complain. Music began to be a nuisance to some. Some began to voice their objections, some began to pelt stones and some even complained to the police. When the police arrived they felt ashamed looking at her predicament. After all she was not doing anything to trouble others but simply to support herself.
She found that her place of residence and her home land were becoming intolerant to her and so she decided to move base. She moved to Panjim. She was thrilled to find that some spaces were accessible to her. But it’s not enough. She has begun teaching music in a couple of schools. She has some sessions at the Don Bosco Oratory. And she is only raring to do more. To meet more children, students, senior citizens, pregnant women, underprivileged children, all who are differently abled. To heal, move and inspire them with music. But we have a long way to go. To accept Jolene and all that she represents. We have a long way to go to make a place and a space for Jolene, in our so called smart city and in our psyche.
(Tallulah D’Silva is a practising architect in Goa and has recently taught at the Goa College of Architecture as adjunct professor)
