Despite the nearly sub-zero temperatures (I believe it was 13 degrees?) our family and friends participated in the 2013 Denver Jingle Bell Walk on Sunday. (Honestly, I think it was warmer than last year because last year it was windy.) It was our biggest team yet with 22 adults, one baby, and one dog.
As the honoree this year, I gave a short speech at the start of the race. I briefly told my story and said it was a privilege to represent all the young people out there who are trying to start their careers, start their families, and start their lives while living with arthritis. And even though I didn't grow up with arthritis I also hope that I can serve as a role model for kids with arthritis.
Sadly, since my knees have been giving me a lot of trouble, I wasn't actually able to walk myself this year. (Unfortunately the knee injections did not seem to solve the problem, although it seems to have helped at least a little bit.) Not being able to participate really got me thinking again about whether "A Walk" is really the best fundraising idea for arthritis. Yes, as the honoree theoretically everyone was walking in my honor. But how many of them knew I couldn't do the walk myself? How many of them really understood the impact that RA has on my life? Aside from raising some money, is the Jingle Bell Walk really getting the message out and raising awareness about arthritis? Honestly I'm not sure it is.
As the honoree I attended several pre-walk events this year. At one of the events I met some committee members (yes, the volunteers who organize the Jingle Bell Walk) who didn't seem to know that there were different types of arthritis! I had to explain the difference between RA and OA to them. One of them even joked to me that at least I didn't have to walk like Quasimodo, and I had to explain to him that arthritis can, in fact, be crippling and disabling. Learning that the people who were organizing the event were so uninformed themselves (and thought cripple jokes were funny) did not leave me with much hope that the event was actually getting the message out. I did speak to the Arthritis Foundation staff about the incident and they assured me that they would re-double their education efforts, but it was still disheartening.
While walking and gentle exercise can be very beneficial for people with arthritis, maybe having "A Walk" as our main fundraiser does not send out the right message to the general public. Because many people with arthritis can't walk, or struggle to walk, or find walking painful - at least some of the time. The more I think about it, the more I think Dan is probably right:
You would never see the Breast Cancer people hold a wet-t-shirt contest, and you would never see the Cystic Fibrosis people hold a competition to see who could hold their breath the longest. Also, you would never see the alcoholic crowd hosting a wine tasting, and you certainly would never see the arthritis crowd hosting a walk – oh wait! Do you see how crazy it sounds when in appropriate company?
The problem is, although I have been thinking about it a lot lately, I haven't come up with any better ideas for alternatives. So I am reluctant to say that we should stop walking for arthritis - because it does raise research dollars. But. But I wish there was something we could do to make sure the message about the impact of arthritis actually gets to the people who are participating.
I'm going to keep thinking about it.