I-Jung Grace Lu
In this article, Grace shares the findings of her doctoral research into the importance of virtual support communities for parents of disabled children in Taiwan.
Background
“May I add you on Facebook?” a mother of a boy with Down’s syndrome asked when I was working as a volunteer in a preschool for children with disabilities. It was through these connections that I discovered how social networking sites (like Facebook or WhatsApp) and virtual communities have become important support tools for parents of disabled children.
They join to seek more information about raising their children and form private virtual communities, which only local parents can join. These groups bring them closer to each other and enable them to access more information.
I decided to do a PhD that focused on three virtual communities of parents. I observed their interactions within the groups to understand how information and support is shared and how they developed a shared sense of identity and belonging. Most importantly, such virtual interactions helped them to unite their power to advocate for their and their children’s rights to be accepted by society and to access resources and care needed in their schools and communities
A Taiwanese context
All parents of disabled children receive healthcare, financial support, and services from local government social welfare departments, via local hospitals and development centres. The services commonly provided include various counselling and psychotherapy sessions for parents, home-care services, and respite care.
However, lack of 1) consistent guidance on how the services should be provided, or 2) resources at local government level, lead to inconsistent quality and quantity of support. Most parents have to wait more than six months to enrol in a programme or receive support services for themselves or their children.
Besides, due to the traditional value of Face and Karma from Buddhism, which is deeply rooted in the Taiwanese culture, parents of disabled children find it difficult to seek support from ‘outsiders’ who are not part their family. They want to protect themselves and their children from losing face, as others perceive them as ‘unfortunate’ or ‘bad luck’.
All children in Taiwan must complete 12 years of compulsory education at local schools, unless there is sufficient proof that they are too ill or weak to attend. Those unable to attend receive bedside teaching until their compulsory education is complete. Government-funded schools are free to attend, but all students pay for the miscellaneous fees.
According to Special Educational Act, parents have a right and responsibility to participate in their children’s individual educational programme (IEP) meetings to ensure they receive the best educational support. However, despite the basic requirement stated in the Enforcement Rules of the Special Education Act, there is no specific code of practice for such parental engagement, leading to inconsistencies in how schools support parents to engage.
Even when intentionally engaged in the education process, some parents still feel excluded or not consulted with respect by educators and other professionals. They mentioned the struggle of constantly fighting for support and attention and negotiating for better help and resources. Negative experiences with services, poor relationships with professionals, and fear of losing face also hinder parents from searching out further information.
When help becomes just a click away
Over 90% of people in Taiwan are internet users, and smart devices have almost become daily essentials for building social and professional networks. Increasingly, parents turn to the internet for support.
Social networking sites enable connections, relationships, emotional support, and efficient ways to collect and share information. Posting links with information parents may need and ‘tagging’ can help others to access information directly.
‘Liking’ or commenting on posts to show support, and using positive emojis, helps parents express support for each other and create a sense of belonging within a virtual group. Parents begin to redefine their identities, as a result of this belonging, and can be empowered through the information and emotional support they received from each other.
Through these virtual communities, parents rapidly and frequently shared their parenting experiences including their knowledge about childcare, child development, and approaches to caring for the siblings of disabled children. Medical information is frequently discussed and debated. As the sites enable users to quickly broadcast thoughts and opinions to their networks, they also become ideal platforms for advocacy.
For example, the strong emotional connections shared by the parents, enabled them to unite in their criticism of the insufficient support they receive, and to work together towards advocating for more inclusive approaches.
They also share useful information about healthcare or available resources to encourage parents who may be struggling. These virtual communities provide the tools that give these parents their voice to challenge the current welfare and support system.
The challenges
Joining virtual communities may not always guarantee a positive experience for all parents. Sometimes, misleading informal information shared may seem more attractive to the parents as it may be more interesting to read.
There were professionals, such as doctors or educators, who volunteered their time to moderate the discussions and help parents to be aware of fake information and provide correct details, especially on medical issues. However, such professionals were not part of all groups.
In addition, even though most interactions and networks within these virtual communities were beneficial to parents, the process of redefining parental identity and negotiating support can be difficult. There were also cases of more active parents withholding control of the resources and connections, and using this control to manipulate the relationships within the network. And some parents experienced exclusion when their character and ideology did not quite fit with the communities they hoped to join.
Conclusions
From my research, I found that even with some limitations and challenges, virtual communities provide parents in Taiwan with more opportunities to seek help and support. These communities empower parents due to the quick connections and the networks they build together.
After the outbreak of COVID-19, we are now entering a digital era in which the line between the virtual and real-life network has become more and more blurry. Help and support for parents through online platforms and virtual communities became increasingly essential. Therefore, professionals should learn more about virtual interactions and seek effective ways to provide the best support for parents and their disabled children.
Grace completed her PhD at the University of Manchester and is now employed as assistant professor of Thunghai University, Taiwan. She can be contacted via the EENET office.