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As Facebook users, we probably all share to a certain degree that love/hate relationship with social media. In the space of a few minutes, we have access to people, places, politics, and so much more. While social media isn’t without its dangers, when used for genuine purposes, it can have many positive effects on individuals and communities.
Our personal experience of using Facebook has been overwhelmingly positive. We were one of many families that used it as a means to keep our whanau and friends updated with our son, Chace’s medical updates during treatment. Often families and friends can feel unsure about how things are going, so it provides an accessible way to keep connected and allows parents/caregivers the power to choose what information is shared and what it kept private.
I recall the day I submitted my request to Facebook admin to change our page from “Chace Topperwien Fundraising “ to the “Dream Chaser Foundation”. This required a lot of emotional energy and was harsh reminder of the group we now belonged to – bereaved parents.
Since then, our Facebook page has been engine room to our charity. It is an invaluable tool for us to promote bone marrow and everything that we do to support children with cancer in Aotearoa.
There is of course, the darker side of running a community page. We have our fair share of spam or bulling messages that are privately sent. Often these are from people with a particular agenda who have only one intention, to upset and disrupt.
I would be lying if these messages didn’t affect me, however four years on, I have managed to not be pulled into their orbit and often ignore or use the “block” option. Every now and then, I have bitten back, and every time it has resulted in more abuse and in some cases disturbing bullying.
We are one of many not for profit or “good causes” that are subject to this. Sometime I see, parents from various organisations around the world reply publically, and while this is tempting, I follow the more subtle approach of not giving these people/groups the ability to draw more attention to their cause by exposing them. The “name and shame” theory doesn’t have the same affect when the majority are sent from fake profiles. I believe that without a voice, their messages can fall flat and hopefully sends a message not to bother.
Instead we use our page as a means to bring our personal experience, the experiences of families, and our supporters together in a positive, real and accessible way. There are moments where I have to consider the audience when I’m writing my posts and while they may seem that they are “organically” written, often they are written after a few days thought about the particular topic.
We owe a lot to the positive power of social media, the trajectory of Dream Chaser might be much different if we didn’t have this tool to spread our messages of love, hope and positivity.
You may have noticed we never change our profile pic, this picture of Chace with his beautiful blond locks is very special to us. It was taken on the first day of treatment. It still, despite what happened, represents hope to us. It can be very stressful running a child cancer charity so this picture helps to keep us grounded and remember why we do everything we do.
Opinion by Keri Topperwien
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