I had interned with an organization, Mobility India during 2007-2009. Its services were targeted towards persons with disability. Mobility India promoted mobility for persons with disabilities, in rural areas and urban slums (especially women and children). It works toward an inclusive society where persons with disabilities have equal rights and a good quality of life. Some of the main services offered by Mobility India were Training, networking, research and development, community-based rehabilitation, orthotics, prosthetics, speech, occupational therapy, and physiotherapy.
As a part of the field work exposure and research, I went to Sarbandapalya, Bhavaninagar, L.R. Nagar, Neelasandara, Kadaranhalli, and Yarabnagar slums in Bangalore.
I studied the mothers of families in age range of 20 to 40 years who each had at least one child with disabilities. My research was to document the micro level factors that are prevalent in a community from the individual level, in each and every household and influence diseases in a slum. They could be factors like lack of education, gender discrimination , poverty , malnutrition , environmental and cultural practices prevalent in the slums that may directly or indirectly affect disability and I wanted to understand their patterns of impact.
The cultural & environmental aspects
Many of the households had at least one child with disability and the persons with disability in these slums mostly fell under the age range of 4 to 16 years.The slums have predominantly had Islamic and Hindu households and nuclear families. Many of them have had consanguineous and early marriages, have had early pregnancy and had not done family planning. The spouses had clashes due to finance and other marital issues which were not disclosed. So poverty played a dominant role in these people’s lives. Some of the women had faced religious and family restrictions regarding family planning. Malnutrition, the entire time during pregnancy had been prevalent in some of the households. Some of them had engaged in Aggarbatti and beedi making and rag picking occupation during pregnancy but seemed not to be aware of the harmful effects .They in fact had the opinion that being in the occupation has not caused any damage to their health. The women had stayed in the husband’s house during pregnancy and have worked during pregnancy .This had increased their work load and only a few of them had been accompanied by relatives. Some of them had their delivery at home.
A few of the households couldn’t afford treatment due to financial constraints , though they were able to give enough time and energy for the child with disability . The mothers had taken the help of Mobility India to treat their children. A few of them had discontinued therapy for their children due to health issues. The fathers also actively involved themselves in therapy for children except a few fathers who did not provide money or care about therapy .A few of the parents had felt caregiver stress and had contemplated on sending their child with disability , to a hostel.
Causes behind high prevalence of disability.
Many mothers havehad accidents and also physical illness during pregnancy and had taken medication for it. They have had regular check-ups with the doctor and had taken medication for general physical conditions like fever , abortion , low or high blood pressure .Some of the mothers have had taken medication without doctor’s prescription. A very negligible number have tried to abort the child after five months of pregnancy . And some of children have undergone complications during delivery. A few of the women have attempted suicide during pregnancy but have felt no complications about the same except a one or two before delivery .They are also unaware of the effects of the suicide attempts on the children. The mothers have had normal delivery and haven’t had miscarriages , still births , infant deaths or abortions. Though there are exceptions where a few have had cesarean delivery. They have also given a considerable gap between two pregnancies, of more than a year. The mothers have promptly given vaccination and immunization to their children . A few of them have been unaware of them and feel that the injections are contaminated.
The Role of Education
Majority of the mothers believed that their children’s disability can be improved through medical rehabilitation and they all also had the belief that God can cure their children’s disability. The women had dropped out of school due to marriage, parental pressure and financial constraints. Some of the mothers had not enrolled their children with disability in schools due to reasons like health, behavioral patterns .A few of the households had stopped their children from going to school due to financial constraints and children’s lack of interest in studies. The mothers did not know about their child’s growth during pregnancy, hadn’t taken precautions to have a healthy delivery and were unaware of the reasons behind their child’s disability. They attributed it to reasons like God’s curse or fate , fever , injections ,solar eclipse , brain damage , delayed milestones , consanguineous marriage , lack of vaccination , birth trauma and complications with the child. Many of them still had belief that their children’s disability could be improved through medical rehabilitation and also their faith in God.
Role of Poverty
Most of the households come under below poverty line and held a BPL card. A significant number of households did not have sufficient income to take care of their basic needs or support their children with disability. The women felt the necessity to work but were not allowed to work due to reasons like ill health , time constraints , lack of skills or convenient jobs or had undergone operation or they were involved mostly in childcare.
The status of the women
The mothers involved in childcare and very few fathers equally involved in child care. They were allowed to go out of the house frequently for family work and child care but with husband’s permission .Some of them were not allowed to go out of their houses at all.Mostly the husbands took the decisions regarding finance,pregnancy , gender of the child , and take care of family responsibilities though the women knew the procedures.The women were members of self-help groups(SHGs) and very few had faced obstacles from joining the SHGs .In many of the households , both the spouses contributed equally to treat their children with disability.
The above mentioned micro level factors overlap , aggravate each other and affect disability. Disability in the slums causes functional and realistic limitation on the person and becomes instrumental in turning the person a handicap. This in turn aggravates poverty .The factors form the cause and also the consequence of each other. The magnitude of these factors matter a lot when it comes to rehabilitation or intervention in these slums. It is mandatory to be sensitive to these issues and customize the interventions according to the socioeconomic and cultural background of these slums.