Parental Disclosure of Disability on YouTube
By Katya Borgos-Rodriguez, Kathryn E. Ringland and Anne Marie Piper
In recent years, we are seeing parents turn to online platforms to connect with family, friends and other parents. In doing so, they often engage in “sharenting”, where they share information about themselves and their children by documenting their lives to keep their networks updated and maintain a record of memories as the child grows. Research has studied the disclosure practices — that is the practice of choosing to reveal or disclose personal information — of parents of children with disabilities in various online settings. Parents use online platforms such as Facebook to seek answers to their unique questions, learn about new resources, and find support in other families facing similar situations. In this paper, we are especially interested in how these parents produce and share content on video-based social platforms like YouTube.
Family and child-centered channels have become increasingly popular on YouTube. One salient example is Ryan’s World, a channel that began with a young child opening toys, playing with them and providing a review of them. The channel has grown to the extent that he now has his own line of toys sold in Target, and a Spanish adaptation of the channel is now available. In 2018, the channel earned the minor $22 million, making him the number one highest-paid YouTube star according to Forbes. Something important to note is that Ryan did not achieve all of this by himself — his two parents are involved in the production and sharing of the content on his channel. Ryan’s channel provides an extreme example of the extent to which children can be brought into the public eye through YouTube. This emerging culture of YouTube “microcelebrities” combined with the affordances of YouTube as an online platform — particularly the potential for monetization based on video engagement — raise new ethical concerns for parent-generated content that features children.
Now, what happens when the practices of video and parental resource-sharing brings children with disabilities into the spotlight? Our recent study brought together these two lines of work by analyzing videos from parents of children with developmental disabilities on YouTube. We identified and conducted a detailed analysis of 36 parent content creators by analyzing their channel names, channel descriptions, titles of videos, video descriptions, comments and video content. To complement our online data, we also interviewed several of these content creators. For more details, please read the full paper.
Why and how do parents of children with developmental disabilities create and share content on YouTube about their experiences as a family?
Parents described how they had difficulty finding a real-life view into parenting a child with a developmental disability in commonly available clinical or academic resources, so they sought to fill that gap through their own video content. For example, parents explained that although they found a lot of content online and offline that was centered around topics such as what ADHD is or what the “signs” of autism could be for children, they wanted more about “everyday” life. Through their own presentations of “real” life on YouTube, parents connected with each other to obtain information and find support in other families. They shared videos about parenting advice, home-based therapy activities, sensory play, among many others. In our study, we found it compelling to see these practices happening on YouTube, where video footage directly involving children are central.
Although parents were having these supportive exchanges, we realized that connections were happening at the cost of disclosing family experiences and information about children, which can be dangerous for everyone involved. Because of this, we were curious to know why parents were participating in such sensitive disclosures. In the end, we found that it all came down to parents sharing their content on YouTube as a way of advocating for social acceptance and educating the general public on what developmental disabilities are and look like. One surprising type of video through which parents sought to educate others involved recording children during times of distress, such as when they were experiencing sensory meltdowns. They did so to have viewers reflect on the differences between a child “throwing a tantrum” versus a child who is experiencing a distressing sensory-related event.
Both the content creators and audiences had mixed feelings about having this type of content available on YouTube. Viewers — including other parent content creators — left comments indicating that it was unnecessary to display children in distress, while others felt this type of content was relatable and thanked uploaders for being “real” about their experience and educating others. To make this situation even more complicated, these “meltdown videos” were often highly visible due to the large number of views and comments they received. YouTube’s ranking algorithms and potential to generate revenue from ads and affiliate links introduces important ethical complexities to parents’ practices. Given that videos of this sort had the tendency to receive the most attention and many families monetized their content, we saw viewers question parents’ motives in producing their videos. Regardless, parents justified monetization of their content and child involvement in different ways. Some families were transparent with the audience about how they manage revenue obtained from views, such as using the income to purchase clothes or communication devices for their child. Others mentioned that they spent a lot of time and effort on their videos, therefore they didn’t see a problem in receiving monetary compensation for their content. Although parents claimed to involve children in the process of deciding what goes online, the audience is left to wonder whether children fully understand the immediate and future consequences behind these decisions.
What are the benefits and costs of parental disclosure on YouTube?
Our study shows the complex trade-offs of online parental disclosure on YouTube. We see that parents of children with developmental disabilities are connecting with each other to fill gaps in the resources that are currently available to them. They are also taking it upon themselves to educate the general public and expand the representation of disability in the media. Yet, it is unclear whether these benefits outweigh children’s need for privacy and control. Adding to the risks in online parental disclosure that previous studies have identified, our analysis highlights concerns particular to disclosure of disability, including future discrimination against children because of their identity and, ironically, reinforcement of the stigma creators were trying to stop.
Further, this raises questions around children’s role in online disclosure. For example, both the experience of disability and their position as minors could compete with a child’s ability to consent and the control they have over how both their disability and persona are represented online. These considerations are further nuanced by the creators’ opportunity to monetize their content. At worst, there might be a real temptation for the monetization of content to override a child’s desire to participate in these videos. Even though parents justify their practice in different ways, it’s unclear what the direct benefit to the child is.
Finally, this kind of research requires us to reflect on our own positionality and the consequences of our work as researchers. We might, for example, see sensational behavior rather than everyday family life. And in doing this, we may actually be bringing attention to and further marginalizing parents that already feel isolated. We must find a careful balance of our own personal sensitivities against that narratives of these parents and families. As is shown through our work, we can learn from parents’ advocacy work and reshape our research agenda to create tools that support rather than “normalize” or “change” individuals. For example, we can see parents’ decisions to disclose sensitive information about their children on YouTube as an indication of their need for new forms of family support while also protecting children from harmful exposure.
This work will be presented at the 22nd ACM Conference on Computer-Supported Cooperative Work and Social Computing (CSCW).
Citation: Katya Borgos-Rodriguez, Kathryn E. Ringland, and Anne Marie Piper. 2019. MyAutsomeFamilyLife: Analyzing Parents of Children with Developmental Disabilities on YouTube. Proc. ACM Hum.-Comput. Interact. 3, CSCW, Article 94 (November 2019), 26 pages. https://doi.org/10.1145/3359196
