Children with disabilities and Covid-19
It has become a routine for Tarek to pay frequent visits to the shops located near his house at Geneva Camp. During the outbreak of Covid-19, keeping Tarek, an adolescent with intellectual disability at home, is getting harder for his parents. On the other hand, Tarek’s younger brother Jalal, who is also intellectually disabled, stays at home, spending his days watching TV while following all the rules to avoid getting infected by Covid-19. Tarek and Jalal’s mother, Jaheda Begum said, “Being intellectually disbaled, both of my sons often forget what has been taught to them, regarding social distancing and washing hands. It has been a huge challenge for us to keep reminding them of these rules.” In order to restrain Tarek from going outside, Jaheda often locks the main door of their home.
Besides coping with the rules and regulations to avid getting affected by Covid-19, the regular lives of people with disabilities are being affected and certain activities which are heavily integrated with their well being are being disrupted. The challenge is higher among underprivileged communities, when it comes to accessing basic services and aid, including physiotherapy, medicine, educational and occupational therapy and consultation from therapists and schools, than people with disability from the privileged society.
Socio-economic condition has a huge role to play
“We are spending our days in great misery, thinking everyday about what would happen next,” said Jaheda. For people with low incomes, It is really difficult to maintain the rules of social distancing, because their living-standard often does not allow them to maintain the rules and be at home. Both of the brothers sleep together in an 8/10 feet room, and the house has two other rooms with a similar space, in which six other people are staying.
Given these people are living in camps or slums in one of the densely populated areas of Bangladesh, people are bound to share their kitchen facility and bathroom along with other dwellers which increase the risk of getting infected by Covid-19.
“I have to walk past three families to go to the bathroom,” said Sanjid, a 20 year-old youth with autism. He needs to take regular medication due to his problem of high blood pressure and sinusitis. “My son is good at maintaining rules to prevent coronavirus. However , the challenge remains due to lack of certain privileges in our lives. Since we cannot afford to buy medicine in bulk, I often need to go outside to buy them. He has to be provided with his regular medicine, two times daily,” said Sanjid’s mother, Hosne Ara. “Till now, we are surviving by the aid provided by the SEID-SUMMIT Community Therapy School, however, that is also on the verge of ending,” she mentioned.
According to a report titled ‘Covid-19 Bangladesh Multi-Sectoral Anticipatory Impact and Need Analysis’, poor households tend to have a higher number of people with disabilities which also results in limiting the special care available to these people.
Intensity of care
Living with her grandmother at Hazaribagh park area, Shilamoni, an adolescent with cerebral palsy needs to conduct certain exercises to keep her muscles flexible. After moving to her aunt's house at Dhamrai for a while at the end of March, Shilamoni has been hardly following her exercise routine which may cause her to reduce her current level of flexibility. Maleka Begum, Shilamoni’s grandmother, is happy that the adolescent is capable of taking care of herself when it comes to daily activities such as bathing and going to the washroom. However, she disapproves of how Shilamoni is missing her daily exercise. “She doesn’t need much help from me, other than combing her hair and buttoning her dress,” mentioned Maleka Begum.
A person with cerebral palsy requires physiotherapy in order to maintain muscle flexibility. “Due to lack of physiotherapy, a person with cerebral palsy may face problems in their movements,” said Naz-e-Jahan, in-charge and physiotherapist of SEID-SUMMIT Community Therapy School, at Kamrangirchar. Discussing the challenges usually faced by people with disabilities, Naz-e-Jahan said, “People with autism usually face difficulties with accepting the changes in their regular lives. Any change can cause them to go through anxiety, and they would feel the urge to go outside. If anything feels unpleasant to them, it may cause convulsion.” According to the level of particular people with intellectual disability, these people tend to forget things and need to go through a regular process of reminding what has been taught to them.
Together with her mother and little brother, Nilima lives in a small room in which there barely remains any space after placing a bed, at Kamrangichar. The family shares the kitchen and bathroom with another family. An adolescent with Down’s Syndrome who is able to conduct her own work, Nilima is severely sensitive to cold related diseases. “Nilima suffers from cough, and even fever, with the slightest exposure to water. We tried to restrain her from doing chores at home that demands working with water for a long period of time. However, given our condition it is highly unlikely to give all my attention to her and maintain social distance inside the house,” said her mother.
“Due to socio-economic conditions, lower income families cannot give the required attention to a person with disability. We have seen many cases where parents cannot afford to give time to their disabled children. And, in this crisis, when their basic livelihood is at stake, it is quite impossible for them to provide their special children with the care and attention that’s required for their well being,” said Karishma Ahmed, Director-Program, SEID.
The prevailing mindset of inequality and that such children are unworthy of doing anything, is also present. Families with lower income still think there is no point of investing time and money on their disabled children.
Many schools for underprivileged children with disability have taken steps so that these children can avail the basic services that they require. One such example is SEID-SUMMIT Community Therapy School. “Apart from providing them with food, we are regularly consuting with these special children and their families via mobile, about availing the basic services that they get at school,” said Karishma Ahmed.
The scenario is quite opposite for the privileged community. Parents and the entire family give their best effort in order to provide their children with the basic services they require. Distant learning, classes or over the phone consultation with the therapist are conducted regularly by the family. Muhammad, a child with autism, is spending his time during this lockdown by attending online clasess with his teacher. During the lockdown of Covid-19, his parents have invested a bigger portion of their day with the eight year-old in order to help him prepare for his studies. “His schooling, activities for mental development, occupational and educational therapy are all going on, but within the home set-up,” said his mother, Ruba Sarowar.
A resident of Dhanmondi Shukonya, has mild autism and speech problems. “Since my daughter cannot explain her thoughts through words she becomes anxious while she tries to explain something to us,” said her father, Arif Ahmed. Since October last year, Shukonya has been under the supervision of a speech therapist, and her condition has improved greatly. However, her parents are highly concerned now since her therapist hasn’t been able to visit her during the lockdown. “We have been consulting with the therapist over the phone and following some instructions given by her so that my child doesn’t lose the level of proficiency she has attained over last few months,” said Arif.