December 27, 2008
The second day of Kwanzaa celebrates self-determination. As a very young child, I struggled to truly understand what this meant. It seemed like one of the hardest concepts to truly grasp. I knew it had something to do with believing in yourself, but I knew that wasn't all it was about it. Confidence was a catalyst, but it was about believing you could do something... and actually doing it on your terms.
No one can accuse Emru or I of not being self-starters (especially Emru, I'm the procrastinator). We try to look for solutions when we or a friend experience a problem. We try to get help, but if we can't find it, we try to figure out what we can do as best as we can, in a way we know how.
Part of this is the understanding that analyzing trends and numbers matter, but as individuals, we are not statistics. We have a higher chance of matching the statistic if we don't begin to take the pains to shape our destinies. I know: easier said than done! But that is an even better reason to get cracking.
For instance, if neither Canadian registry allows personal appeals on their websites, it's about patients creating their own spaces and letting the public know about their need for help to give them a better chance at survival, if not for themselves, for someone like them.
Another example: if neither Canadian registry allows bone marrow drives, its about getting a US registry to come to Canada at personal expense to swab potential matches, or Canadians to go across the border to run bone marrow drives with US friends and volunteers, and work to get drives in Canada, because they won't happen unless people believe that they deserve to be heard on this issue.
Self-determination is about forging your own path and understanding the power of our own voices, and challenge those that try to impose a framework on us that suits them, even though it is not their life in the balance, or that of a loved one. It means patients speaking up for themselves. It means people creating their own campaigns and even organizations. It means rallying to challenge the status quo and ask why registries work they way they do, and making them understand that they are dealing with real people. It's about making potential donors understand that they have the right to make an informed decision about registration. Advocating for the donor also means lobbying for resources for donors that are easy to understand, complete and balanced, and these requests being taken seriously by registries.
This is why organizations like the African Caribbean Leukemia Trust, but also the Asian American Donor Program, Gift of Life Bone Marrow Foundation, and Appeal for South Asian Donors are so important. They work with larger registries, but the provide a specific range of voices to help increase donor education recruitment on their own terms and often represent patients and help their families cope.
We all have a right to be heard, and forge our own destinies.