As part of my year at the fellowship, I am working with Nayi Disha Resource Centre (NDRC) — a one-stop-shop for caregivers of persons with Intellectual and Developmental Disabilities (IDDs). In today’s India, the resources and platforms available for persons with disabilities (PWDs) have certain proliferated. And yet, there has not been a proportional increase in how informed parents, families, teachers, and caregivers of persons with IDDs are. NDRC’s aim is to provide tech-based solutions to this imbalance. The three main tech pillars are:
- The Service Directory on the website, where parents can look for therapists, paediatricians, special schools, and other services in their area. Think Yellow Pages, but only for IDDs
- The Information Resources on the website and social media. Everything from articles to slide-shows to videos, podcasts, and posters. We try to answer any and all questions may have, such as “Why is my child head-banging?” or “How can I prepare my child for employment?”
- The WhatsApp Support Groups, where families interact with one another to not only learn from each other’s experiences but also inspire hope and a sense of community among themselves
Over the last four years, NDRC’s tech-based outreach has grown exponentially — our goal for this year is to reach 2000 website visits per day. We’re revamping the website, making it more user-friendly, and incorporating all the feedback we’ve received from visitors. We’re pushing links to our Information Resources on the WhatsApp groups and on social media like Facebook, LinkedIn, and Instagram. We’re even creating a presence on Quora so as to bring more visitors to the site.
There’s just one roadblock — parents will not click on links. It’s counter-intuitive. Even if we consider the most tech-savvy section of our parent groups, there’s an unexplained inertia. The immediacy with which replies will pour in on NDRC WhatsApp groups may seem encouraging. But when the same respondents are asked about the website, they reply, “You have a website?” There have been times parents have asked us to send them the answers to specific questions. We send them the relevant links from our website, but lo and behold! Even after repeated follow ups, parents will not have checked the information out. It has us baffled: Why wouldn’t parents make the most of a solution being dropped into their laps? Especially after requesting for it themselves?
A similar issue was seen elsewhere, Dr. Gene Richardson in a interview on gender and HIV/AIDS, was speaking about his research in southern Africa on structural violence and he narrated an incredibly interesting anecdote:
Studies were conducted on gay men in America, wherein they were given anti-HIV drugs. The study was largely successful in that they found “70% to 80% protection for people that had high levels of the drug in their bodies”. But when they tried to replicate the same study with high-risk South African women, it failed. The reason was that the women told the researchers they had taken the drug 100% of the times they engaged in sex, when in fact test results showed the level of the drug was not high in their bodies at all.
Why were they lying? Why weren’t they taking a drug that could potentially save their lives? Dr. Richardson points out that the researchers “didn’t take into mind that gay men in the US have much more agency than women in Southern Africa”. The drug was an easily acceptable product for one demographic but socio-cultural barriers made it less acceptable for another demographic.
The Way Forward
This perspective made me look at the roadblock at NDRC in a new light. Maybe the problem was not in our product itself. Our research is top-notch and our graphics are world-class. Sure, we can always do better, as we are with revamping the website. But maybe that’s not where most of our problem lies …
Perhaps we just need to find the socio-cultural barrier that prevents our demographic from making full use of our product. Dive deeper into the what when how and why of NDRC website visit trends. Look at studies by other organisations on tech-use for information among the different sections of Indian society. Perhaps with such a picture in mind, we’ll find the missing link. Why does the comfort of a closed WhatsApp support group vanish on the website? Is it that social stigma against IDDs makes open platforms like websites discomforting? Or is it just a matter of practice and ease? Are we expecting too much of a demographic that didn’t grow up on Twitter, and still types on a touch-screen with one finger at a time?
We don’t have the answer yet. We’re still wondering why parents who are incredibly active on Facebook and WhatsApp do not find the inclination to visit an information resource website. But I think acknowledging that it may be time to dawn a non-tech lens is a good start!