This last week has been huge here in the Russell Household. We’ve had appointments, health scares and car issues. Not to mention school commitments, sickness and extra-curricular activities to deal with as well. I also started an online copywriting course. And amongst it all we also did our best to raise awareness of albinism and the first ever UN sanctioned International Albinism Awareness Day.
The awareness raising started innocently enough. I published some posts on albinism, as I do from time to time. One of them, Albinism 101, seemed to strike a particular chord. To date, it has been viewed over 5,000 times and has been shared over 2,000 times on Facebook alone. It is close to being in my top 3 posts of all time and it was only posted 10 days ago. I hope it will eventually be my biggest ever post – I’d be so proud to know that I have made even the smallest difference in the understanding of albinism in the general community.
I then attracted my first ever twitter troll who has some very twisted ideas on albinism. I eventually blocked them (the first person I have ever needed to block) and refused to be drawn into futile conversation with them. With a history of tweets suggesting that people with albinism should be aborted (and worse) I thought it best to just move on. A part of me wishes I could have changed their mind but one thing I have learned in online life – sometimes it’s best to walk away and not give further air or fuel to damaging views. You are never going to change their mind. Best to remain positive and not dwell on those wanting to drag you down.
Meanwhile my son had been working on an albinism presentation for classmates at his school. I had approached the school earlier to see whether we could do something to raise awareness in our own backyard. They could not have been more supportive or accommodating. In the end they freed up a teacher to work with him on the presentation, organised for him to present to each class in turn and held a crazy hat day to engage the kids and get them thinking about what it means to live with albinism every day.
Check out my version of his presentation below (the original was saved to a DET specific file that only works on smart boards).
[gview file=”http://myhometruths.com/wp-content/uploads/2015/06/Albinism-Presentation.pptx”]
Pretty cool for an eleven year old, huh? (even if I’m biased!)
I was so impressed with the presentation and my son’s enthusiasm to raise awareness that I decided to contact our local ABC radio station to see if they were aware of International Albinism Awareness Day and whether they would run some sort of awareness story in support. They loved that he was actively raising awareness and invited us into the studio for an interview on their mornings program. After a split second where I went “Crap, I don’t know if we can do the radio – can we logistically get there in time? What if Gilbert swears or says something completely inappropriate on air? What if I stuff up statistics or get it all wrong?” I decided to take the leap and agree to the interview.
If we were serious in raising awareness we had to be brave and just do it.
So that’s how we ended up on 1233 ABC Newcastle last Friday morning chatting with the lovely Jill Emberson. Gilbert had his moments but he got his point across and impressed many with his positive attitude, his innate belief that he is no different to anyone else and his desire to represent the albinism community. And I managed to get through it without stuffing up and actually sounding like I knew what I was on about! The soundbites of both of us, as replayed during the day, were disconcerting whenever they came on but Gilbert’s pronouncements brought a smile to my face every single time. That was my boy on the radio!

To accompany the interview Rob Virtue, ABC multimedia reporter, wrote a story using info from the interview and from Gilbert’s presentation. He also got us to participate in an ad hoc photo shoot. Now, I must confess I dressed for radio that morning – my normal mummy attire, no makeup, wet hair – with no expectation of being seen beyond the studio. The photo definitely reflects that look – not my best work but it did the trick and my heightened colour highlighted just how pale my boy really is!

If a radio interview and an online story weren’t enough, we were then approached for a news interview with our local broadcaster, NBN. Luckily we have known the gorgeous Natasha Beyersdorf for many years and she did a brilliant job of putting us both at ease and getting the best out of Gilbert. They filmed him giving his presentation, taking questions from the class, messing about in the playground and having a sit-down interview. The finished product perfectly captured Gilbert being Gilbert although there was so many other moments that ended up on the cutting room floor.

The crowning glory for him was sitting down on Monday night to watch the news and wait for his story to air. He watched in awe and then turned to us in disbelief that he, HE, was on the news! He then went on for quite some time about being famous, becoming a celebrity and how everyone would want to know him the next day. I did my best to dampen his pretentions but he deserved his moment in the sun. He wanted to raise albinism awareness and he did just that.
Considering he has high functioning autism, just being able to collect his thoughts, stay (sort of) on topic, present information in public and talk to strangers is a massive achievement. What started out as something small, grew into something bigger than any of us could have imagined. I am beyond proud that he rose to every challenge. Presenting to the school. Talking on the radio. Being filmed. He accepted it all and ran with it.
This whole process has been surprising in so many ways. Gilbert has discovered a genuine desire to raise awareness and help others like him. What began as an exercise to merely educate himself and his school has sparked a profound transformation. Gilbert has discovered the power of being an advocate. He is now aware, probably for the first time, of how special and unique he is. He now realises the rarity of his condition. He now truly wants to get out there and normalise albinism, as well as autism.
There have been so many proud mama moments these past few weeks but, for me, seeing this transformation tops them all.
Go Gilbert Go!