‘Being disabled should not mean being disqualified from having access to every aspect of life’ – Emma Thompson.
An inspiring quote indeed. However, what if people were still living in an environment that made accessibility nearly impossible?
This blog delves into just that: all the micro-level factors affecting disabilities in the slums of Bangalore that inhibit their growth and abilities from participating meaningfully in society. While I restricted my research to Bangalore, there are several slums and rural households in India that may reflect these conditions.
How it started
From 2007 to 2009, I interned with Mobility India, an organisation with services targeted toward persons with disabilities. Mobility India promoted mobility for such persons in rural areas and urban slums. Women and children were especially in focus. It worked for an inclusive society where disabled persons had equal rights and good quality lives.
The primary services were training, networking, research and development, community-based rehabilitation, orthotics, prosthetics, speech and occupational therapy, and physiotherapy.
I visited Sarbandapalya, Bhavaninagar, L.R. Nagar, Neelasandara, Kadaranhalli, and Yarabnagar slums as part of my fieldwork and research in Bangalore. In these slums, I studied mothers aged between 20 and 40 years who had at least one child with a disability. This research was to document the prevailing micro-level factors in a community from an individual level, in each household, and the influence of diseases on slums.
These micro-level factors could be lack of education, gender discrimination, poverty, malnutrition, and environmental and cultural practices. In addition, the elements could have directly or indirectly affected disabilities. Therefore, I wanted to understand their impact patterns. As a result, I identified the following the major micro-level factor:
Cultural and Economic Aspects
Persons with disabilities in these slums were majorly in the age group of 4 to 16 years. And several households had at least one child with a disability.
Predominantly, the families were Islamic and Hindu and nuclear. Several girls were married off within the family. Moreover, there were early marriages, too, resulting in early pregnancy without family planning. Some women faced religious and family restrictions when it came to family planning. Spouses also had frequent clashes arising from financial and other marital issues (they chose not to disclose).
The issue of malnutrition was prevalent among families during the entire period of pregnancy. Some of these women engaged in Agarbatti and beedi making and rag-picking to support their families financially while they were pregnant. However, they were unaware of the ill effects of these occupations. On the contrary, they believed that being employed in these jobs caused no harmful damage to their health.
Women also stayed at their husband’s houses during the pregnancy instead of their own family. As such, they also undertook house chores. Very few had support from relatives, which only increased their workload and stress. Some of these women delivered their children at home in unsanitary conditions.
A few households couldn’t afford treatment due to financial constraints, though they invested time and energy for their children with disability. Mothers took the help of Mobility India to treat their kids even as some discontinued therapy due to health issues.
Fathers were also actively involved in their children’s therapy, except for a few who didn’t care about treatment nor provided the financial backing. A few parents underwent caregiver stress, contemplating sending their children with disability to a hostel.
Mother’s mental and physical conditions
Several mothers faced accidents and physical illnesses during pregnancy. Some had regular check-ups and took medication for general physical conditions like fever and low or high blood pressure. Some other mothers took medicines without a doctor’s prescription, which was not advisable.
A negligible number of women tried to abort their children after five months of pregnancy. At the same time, some others underwent complications during childbirth. A few women even revealed they attempted suicide during pregnancy, but they faced no difficulties except a couple before delivery. However, they were unaware of the adverse effects of suicide attempts on the unborn child.
Some mothers had vaginal deliveries without miscarriages, stillbirths, infant deaths or abortions. However, cesarean delivery was an exception among a few mothers.
The women had a considerable gap between two pregnancies – more than a year. Mothers also promptly vaccinated and immunised their children. However, a few women were unaware of vaccinations or felt that immunity injections were contaminated.
Many mothers believed medical rehabilitation could improve their children’s disabilities. Some also placed their faith in God to cure their children’s disabilities. Unfortunately, such beliefs signified a lack of education and awareness.
Some women had dropped out of school for three primary reasons –
● Parental Pressure
● Financial Constraints
● Early Marriage
As a result, most of them weren’t literate.
When it came to their child with a disability, some mothers hadn’t enrolled their kids in school due to health reasons or behavioural patterns. A few others had to back out because of financial limitations or children’s lack of interest in education.
Mothers had a minimal idea about their baby’s growth during pregnancy, didn’t take precautions to ensure healthy childbirth and were also unaware of the reasons for their child’s disability. Instead, they attributed it to God’s curse, fate, fever, injections, solar eclipse, brain damage, delayed milestones, consanguineous marriage, lack of vaccination, birth trauma or complications with the children themselves.
Several households belonged to the Below Poverty Line (BPL) group, which meant they neither had sufficient income to care for their basic needs nor support their child with a disability. Women felt it was necessary to work but weren’t allowed to due to ill health, time limitations, lack of skills or convenient jobs. Some of them had undergone operations or were primarily involved in childcare. Poverty eventually affected their child’s health as well as their own.
Women’s status in traditional society
Mothers were primarily involved in caring for their children. Very few fathers took up equal responsibility. The women were allowed to step out for household chores and child care but with their husband’s permission. Some others weren’t allowed this liberty.
Generally, husbands made crucial decisions regarding finance, pregnancy, the child’s acceptable gender, and family responsibilities even though women knew all of these processes.
Women were a part of Self-help Groups (SHGs), and only a few faced objections to joining these SHGs. Fortunately, both spouses contributed equally to treating their children with disabilities in many households.
Summing it up
The micro-level factors mentioned above overlapped and aggravated each other, affecting disability.
Disabilities among people in slums caused functional and realistic limitations, which were instrumental in turning the person into a handicap, further amplifying poverty and lack of education. These factors became the cause as well as the consequence of each other. The magnitude of these factors mattered greatly regarding rehabilitation or intervention in these slums.
As those with better privileges, we must be sensitive to these issues and customise interventions based on the socio-economic and cultural background of the people living in these slums.