Journalism Assignment - I had to do actual interviews and write an article based on the interviews. It was ... a new experience.. a bit of a challenge too, but it worked out in the end. It was a different kind of interview(s) - mostly over email and one of the respondents gave their responses over the phone. I was able to get a number of people and thereby different perspectives of the issue... A big thanks to all my interviewees. Overall it was a good experience.
Unseen Faces in the South Asian Community
Cultural isolation is not a new phenomenon amongst immigrant families but what if it is accompanied with the added stresses of managing a disability? This was the case with many families of South Asian origin here in the Bay Area.
Rajni Madan, who lost a daughter to a childhood disability, noticed the bewilderment of such parents and decided to set up a support group that would engage families. That gave birth to “Jeena,” in 2000. Jeena in Hindi means life, and Rajni wanted families to have hope even as they coped with their sudden onset of challenges. It started with 7 families who reached out to each other, but the group has grown to over 500 families today. The disabilities range from the ever-growing Autism to Cerebral Palsy to chromosomal and metabolic disorders.
Jeena’s role has evolved over the years and is driven by the needs of the participating families. Founder Rajni Madan made a conscious decision not to ask for state funding for Jeena’s activities to allow for flexibility in its evolving needs. State funding entails a formal organizational structure and Jeena is entirely parent-run with the help of volunteers. Jeena relies on funding through donations (individuals and corporations) and through corporate grants that cover specific needs. According to Rajni Madan, the number of adults with disabilities is a small minority at Jeena, so most activities at the Milpitas center currently target the needs of the younger children. There are activities such as playgroups, group outings, bowling, picnics, music and dance classes, which focus on the social and pragmatic needs. Recently Jeena won a grant from the Cupertino Chamber of Commerce for community outings to encourage social appropriateness and independent living skills for teens.
Jeena also has a small funding program for families who are monolingual and are struggling to find resources for their children, which is not available through generic sources like insurance companies or school districts. They also have small project in Mangalore India, where they have helped fund the multi-purpose building of a new adult residential facility.
What types of challenges do these families face? I interviewed five Jeena families to find out. Some were parents of older children while others were parents of younger children. For Abhoyjit Bhown, father of a 19 year old, “The disability affects not just the individual but everyone in the family. There's often a constant demand of time and energy to ensure the disabled individual can function in various situations - at home, at school, in the community, etc. This time and energy means that parents and caregivers often give up various aspects of their lives such as work, rest, social activities, and sometimes even sleep. For other members of the family, they often give up their social activities, have fewer friendships, and often cannot engage in things that their peers normally do.”
The other primary focus is on educational and emotional support for the parents via workshops, trainings, and social interaction opportunities. These workshops focus on learning specific techniques such as safety issues or methodologies and therapies. Parents network via a yahoo group and an online forum which makes physical location a non-factor.
Other families too spoke of similar challenges. A small change in schedule could result in sensory overloads, emotional turmoil and melt-downs. Imbibing independence in their children was a big hurdle. Even attempting to explain their children’s (dis)abilities to other families and relatives can be taxing. It is a non-stop commitment of time and effort and this paradoxically leads to social isolation from other families who don’t face or understand such challenges.
Ironically the social aspect, which is an important component in improving the quality of life for all involved, is often the first to suffer. All the while, the families are actively engaged in researching ways (be it educational, medical, therapeutic, social or functional needs) to help the affected individuals as there are no clear cut solutions. The needs of the individuals too change each year as they grew, and fresh challenges arose.
For the parents of the younger kids with disabilities, support groups such as Jeena have provided tremendous emotional and informational support to help them cope and deal with the shock of dealing with the diagnosis. Radha Kannan, parent of a now 10 year old, says, “Jeena helped guide parents to the right type of resources since it is too confusing to navigate the maze and decide where go first.” For Ahmed Hasan, parent of a now 8 year old, “Initially, the caring support from other Jeena parents was a huge emotional support; we felt that we were not alone.”
For parents of many of the older individuals, Jeena has provided wonderful social and emotional support and an environment accepting of their child’s challenges. However, for these parents, the added worry is the long term care and needs of their children – post-school, college, post-college, vocation, housing, finance, and emotional needs. For them, support groups provided help in some, but not all areas. They also felt that support from the community for the families lessened as the child grew. It was important that a support system be in place all their lives, such that they lead meaningful lives. How this was to be achieved, is still unchartered territory. In the meantime, these families were glad to receive whatever support they could get. The role of support groups such as Jeena essentially need to keep evolving, a thought echoed by its founder, to support the needs of its older children, now starting to reach adulthood.
Jeena may be a parent-run organization but often these parents are the same people who are over-stressed and over-stretched for time and resources themselves. Founder Rajni Madan feels that the biggest challenge Jeena faces is the ability for parents to participate on a regular basis. “A lot of times, the community is there to support, but for whatever reasons, the family is not able to participate.” Families too shared this frustration. Parents like Sumathy Narayanan, want to reach out and help or participate but often are limited by the demands of their own special family member.
A number of volunteers have come forth over the years to help Jeena and their support has been invaluable in various ways. I spoke to two such people, to get their perspectives - Prabha Venkat and Sanjana Anand. Prabha Venkat’s entire family, including her two sons, volunteer at Jeena. She started by babysitting while parents attended workshops and helping organize events. Her initial aim was to help in any way, even if it be another listening ear. She started to tutor 2 of the kids and this led to her sons being involved, and they started the Jeena Music Band. She is now an integral part of many of the activities at Jeena. Sanjana Anand is a teacher at Pt. Habib Khan’s School of Hindustani Music and their organization has been teaching Indian Classical Music to a group of Jeena children for over 2 years now. Her love for teaching music initially brought her to Jeena. It turned into wanting to understand the children and how best to teach them in a way that would make a difference. Such volunteers have essentially understood that rather than a disability, it should be regarded as, ‘different ability’. They both acknowledge the importance and role of support groups like Jeena in the lives of the families, especially the emotional and information component. Prabha Venkat also reiterated the need for immigrant families to think about the next steps - “What is the place for such individuals 20 years from now?”
I asked all the interviewees if it was a question of awareness in the community and what could be done to raise awareness. For Suman Kumar, parent of a 16 year old, “More parents of typical kids need to be part of Jeena to create positive interactions and create awareness.” Rajni Madan felt that awareness was far more than it was 11 years ago, but it was also about understanding the abilities of a person. Disability does not mean an inability to lead a normal and productive life. What was needed was a shift in how disabilities were perceived as was acceptance and tolerance on the part of the community at large.
Sanjana Anand felt that there was still a lot of stigma associated with disability in the South Asian community and hence the reluctance of the mainstream community to face issues that were different from their comfort zone – a kind of fear of the unknown. The unpredictability of the edges could be dissolved only through education. When the mainstream audience sees Jeena Kids perform at their public concerts, “It brings about a moment of pause, from their regular lives to understand the importance of organizations like Jeena.” For Prabha Venkat awareness was a function of exposure. The information age was there to help. “Heartstrings have to be tugged , an emotion has to be kindled…then comes maybe curiosity, then interest and before long you have an advocate, a fan and acceptance.”
The need for volunteers is ever-present and growing at support groups such as Jeena. According to Rajni Madan, the bottleneck has often been matching the time availability of volunteers with the needs of families. Prabha Venkat illustrated this mismatch with an interesting analogy - it was easier to run for “a cause,” than to actually interact with the special needs population. Not that the former is not a worthy cause, but running as an activity is predictable while physical interaction is unpredictable. For most, the unfamiliar territory is difficult to venture into. Her advice to all my fellow typical teens is to get involved and become part of this society because you all have a lot to give even as you learn in return.
(Information about the support group and how to volunteer is available at their website www.jeena.org)