Oooooohhhh...that word again! And I don't mean the "r" word, which has recently also had its annual "Spread-the-word-to-end-the-word" Awareness Day. Nope, my views on the r-word are so sophisticated and insightful that I dare not share it here. Oh, what the heck. Here it is...
If you use the r-word in an even-remotely derogatory manner - you are a jackass!
Yip, that's about it really. I mean seriously, it's been ages since I've even heard a doctor use the word retard/retarded in a medical context.
I am actually referring to the word "Disease" which accompanies the annual awareness day for rare diseases. To be completely honest, I don't personally view Rubinstein-Taybi Syndrome as a disease or my child, who is effected by RTS, as being sickly. But firstly, many of the conditions related to RTS could well be classified as a disease and secondly, and most importantly, the occasion is not actually focussed on "disease" but rather on "rare". Had I been the one to take the initiative, to do the ground work to make the 28th of February an official awareness day, to spend days...weeks...months prior to the 28th February marketing and sharing the importance of having such an awareness day then sure, I might certainly have called it Rare Condition Day or something similar. But it was not me doing all the effort from behind the scenes, so instead of criticising a mere discrepancy with regards to terminology, I choose instead to ride on the wave of awareness to enlighten others about the syndrome which effects my son.
Just as a bit of useless info though...the definition of disease :
"A disorder of structure or function in a human, animal or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury"
To learn more about Rubinstein-Taybi Syndrome, please visit the official Rubinstein-Taybi Syndrome Website
To celebrate Rare Disease Day this year, we joined the Daniel and Friends Fund for a super, fun-filled morning...