Tearing off the label ‘Disabled’
“Until and unless we do this [inclusion], it is quite sure that a person will never be respected in his or her life, nor in family neither the society”, Sajida Rahman Danny says
Shihab Shahriar, 27, from Dhaka, may seem like a man of few words at first. Even when he has to talks to others, he speaks in the third person. Any change in normal routine, whether it is unusual weather or a new person he meets, makes him uncomfortable.
The typical society intends to consider him an anomaly because of this weakness in socialization.
However weak he is in interacting with others, Shihab possesses a useful set of skills. He can cut cotton fabric in the perfect size. The cut-pieces are later used in knitting carpet slippers for the Pan Pacific Sonargaon Hotel in Dhaka. He can string colourful pony beads sequentially to make attractive beach jewellery. These products are sold at Aarong outlets.
Like a savant, he can tell about 300 years' calendar in the Gregorian, Bangla and Hijri format.
To therapists, Shihab is one of the many people with autism. Due to this condition, he needs special care at the Parents Forum for the Differently Able-Vocational Training Centre (PFDA-VTC) located in Mohakhali DOHS, Dhaka.
Every weekday, he comes into the 5-storey centre at 9am and stays till 5pm. His daily schedule includes sessions with therapies as well as training on life-skills and income-generating activities.
Since the establishment of PFDA-VTC in October 2014, 400 individuals along with Shihab underwent a transformative development programme. The initiative helps the beneficiaries stand on their own feet, rejecting a social stigma that people with autism and neurodevelopmental disorder are disabled.
Empathised by the innocence of the trainees who are mostly adults, the PFDA-VTC managers fondly call them Bachcha (children). Currently, the centre's children collectively produce 300 pieces of jewellery, 150 pieces of paper-made packets, 300 pairs of carpet slippers and bakery items worth more than Tk7 lakh in a month. Besides, they produce boutique items, handloom show-pieces and run a bakery as well as the centre's food brand 'Angel Chef'.
Four successful trainees of the centre are now working at the Bangladesh Parjatan Corporation's duty-free shop inside the Hazrat Shahjalal International Airport of Dhaka. More than 90 others have been employed at different private-run entities like retail chain Swapno, Transcom stores, Hotel Abokash, The Olive, Olive Garden and Banee's Creation. With support from the International Labour Organization, the centre has facilitated its 21 trainees to start up their own enterprises.
Standing on own feet
Nilufar Naznin, 34, with speech impairment, struggled to continue her marital life as her husband did not empathize to her difficulties. She had been deprived of social dignity and economic solvency.
To change her life, she took part in self-employment training under PFDA-VTC in 2018. With the seed money she received after the training, she started a boutique shop to sell her handloom products like stitched quilt, female attires and show-pieces. At present she is self-dependent.
Dolon Kumar Biswas, another trainee of PFDA-VTC, was born with Down syndrome. The 36-year-old hailed from a poor family of Kazipara, Dhaka and is the youngest of his five siblings. He went through comprehensive life-skill training and later on, a three-month bakery training. Now he works as a staff in Angel Chef. He bakes a variety of foods including pizza, cake and cookies. In addition, he serves food and maintains cleanliness of Angel Chef's outlet at PFDA-VTC.
According to the centre's special educators, Dolon is an honest and dedicated stuff who enjoys his job very much.
"I feel honoured," Dolon stated.
PFDA-VTC founding chairman Sajida Rahman Danny believes that engaging people with special needs in economic activities is crucial for their social inclusion. It is estimated that such people cover more than 10 percent of the population in Bangladesh.
"Until and unless we do this [inclusion], it is quite sure that a person will never be respected in his or her life, nor in family neither the society", she told The Business Standard.
Sajida's struggle with supporting her only son Seeam Ul Karim–a person with autism, cannot be described in few words. She had few chances of raising her son as a regular member of the society but she didn't give up. She has taken care of Seeam single-handedly so that he never felt socially excluded.
She said, "While supporting my son, I came to learn that everybody has the capacity."
Inspired by her experience, Sajida founded PFDA-VTC. The beginning of her journey was like crawling on a rough surface.
"Initially, I had to start with a few similar-minded people. Working for autistic people seemed like a charity, so I couldn't find the professionals I needed. Even the parents of the individuals with special needs didn't believe that their children could overcome all these challenges," Sajida said.
The formation of PFDA-VTC included setting up an organization with professionals and the formulation of training modules to gain efficiency and credibility.
Proper assessment is a prerequisite to train up individuals with special needs. So the special educators of PFDA-VTC monitor the trainees' everyday activities and their behaviour and also keep incident records to enrich the individual database.
Believing in 'Differently able, not disabled'
"When we receive a person with special needs as a trainee, we find them absolutely raw, having no knowledge about social norms. Some of them are found ill-treated and traumatized. We need to reconstruct their mind-set following a well-researched discipline," Sajida said.
In PFDA-VTC, the trainees go through a total of 3598 tasks and 18186 details incorporated under four developmental domains. Along with these, the special educators keep communication with the parents so that the trainees are treated holistically.
The training fee varies on the economic solvency of the parents. If there is a case of insolvency, PFDA-VTC officials engage the sponsors.
In recent visits to PFDA-VTC, the campus was found in full of activities.
In the pre-vocational section, two special educators Nusrat Jahan and Lucky were giving instructions to Humaira, Arjun, Rendy and three others in playing with colour papers. Wallpapers designed with the trainees' artworks were hanged on the walls.
"Although the section is designated for the teenagers, there are trainees aged above 20 because they are at the pre-vocational stage," said Nusrat.
The children didn't seem to be scared of meeting outsiders, neither did they appear anxious. They gave greetings followed by saying their name. A few of them willingly came forward to exhibit what they had done with the colour papers.
In another section with medical equipment, therapist Farhana was found performing therapy to Foyez Uddin, 21 who is a dystonia patient.
Along with four other friends, Saddam, a person with autism, was stringing colourful pony beads in the Group Work section. The 38-year old has been repatriated from the US recently.
"His parents had long been trying to repatriate, but couldn't do so because they were concerned about his care. When they learnt that there is a special care centre in Dhaka, they returned permanently," said Mariam Sara, a special educator at the section.
We found Tausif, 23, affected by cerebral palsy. He is currently working in the computer section. Despite his difficulties, he completed his pass course.
"Tausif is good at English. His cognitive ability is high. He is an intelligent chess player as well," said Aminul Islam, programme manager of PFDA-VTC.
In the Paper Work section, there was Shahriar, affected by learning disability. He was gluing pieces of brown papers to make packets.
Aminul said, "Shahriar is a good photographer. So far, his photographs have been showcased in three exhibitions. Most of the photos showcased on the centre's walls were taken by him".
Amit, challenged by neurodevelopmental disorder, also works at the computer section. He is skilled in office applications and graphic design. Mariam said, "Amit can install different software efficiently."
However, Amit was found at the boutique and block section, pressing a small block against a piece of cloth. Mariam added, "Children at the computer section often get stuck on a computer screen which affects their socialization. Hence, we insist them to work in other sections."
We also found Shawly and Rumi at the boutique and block section. One of them was stitching a quilt while the other was block printing a cloth.
In the bakery section, instructor Pintu Sangma was preparing dough for bakery items while his four associates–with autism, were either slicing the stretched dough on a long stainless-steel table, spreading butter inside buns or packaging the baked foods.
We also had an opportunity to witness a rehearsal of group performance on the centre's roof. There were 10 children, performing with the patriotic song 'Salam Bangladesh Salam'. Their instructors Amir Hossain, Nupur and Mariam were guiding them to perform accordingly.
According to PFDA-VTC managers, cultural activities are crucial for special children's social inclusion.
"At the initial stage, we find the trainees having difficulties in day to day activities. Under the pre-vocational discipline, the trainees are taught how to eat and how to maintain personal hygiene. Later on, we taught them how to adjust with other trainees," Nur Jahan Dipa, principal of PFDA-VTC, told The Business Standard.
"Collectively they learn how to complete a task following order of sequence. Gradually, we try to grow a sense within themselves that their activities could be transformed into income-generating tasks," she added.
Dipa, a mother of a son with autism, cited working experience with Shihab who is among the beginners at PFDA-VTC.
Shihab was reluctant to join the group. He was suffered from repetitive behaviour of cutting things unnecessarily.
His cutting object spree was somehow transformed into something productive. He could cut cloths for carpet slippers in an appropriate manner. But he didn't take lunch at the centre's dining room which is a mandatory part of the training on socialization.
"We came to know that Shihab liked fried potatoes and chicken. So he was served by the food prepared by his mother. After some days, we started providing hand-stretched bread along with fried potatoes at our dining room. Over time, he was motivated to share his home-made food with his friends. To cover the gap, he started taking other foods prepared in our kitchen," Dipa said.
When Shihab's parents admitted him to the vocational training centre, many of their relatives and neighbours opined that they were investing for no result.
"Shihab has performed in four-stage plays in different roles…Things have changed… Our kids have the ability. What they need is access, support and opportunity," Shihab's mother Naima Sultana wrote in one PFDA-VTC publication titled 'Differently Able, Not Disabled'.
