We live next to a water way and have more varieties of fowl than you would expect to be here in the suburbs. With the mild temps this winter and heading into spring, the size of our backyard flocks have increased substantially. So, too, has our cracked corn budget. Although we truly enjoy having them all here—mallards to heron—there is a particular behavior they exhibit that really gets my own feathers ruffled. They peck at each other mercilessly.
I’ve been impressed with the increased number of dialogues surrounding healthcare, lupus, advocacy, events, and so forth found all over the internet. There are more sites to choose from, improved quality of information and opportunities galore to show both your commitment to increasing awareness and to learn more about this illness. There is something out there for everyone including patients, families, friends, neighbors, employers, policy makers, service and, yes, even medical providers. The ways in making lupus relevant in your life these days are as numerous as the lupus symptoms themselves. However, just as it is with our ducks, I’m noticing a familiar trend within lupus advocacy that I struggled with during my years in social service.
The territory and pecking order among lupus organizations and individual advocates are beginning to resemble the flock of ducks I’m feeding. For the ducks, it appears that it really isn’t an issue of whether it is a feeding opportunity to collect together and enjoy the bounty. Even though there is plenty of corn in front of them, they will go out of their way to identify a duck that isn’t doing well, isn’t familiar, isn’t caring for a clutch (with ducklings) or is standing too close to their pile of corn in front of them. It would seem that they question who came first, who is bigger, whose color is better, who has a mate and who doesn’t. I’m no bird expert and I understand that survival of the species comes into play here. I also recognize the fact that their brains have limited reasoning capability. I still can’t help myself, though, in getting after those ducks that I perceive to be bullies and refusing them food because of their behavior.
I view lupus advocacy and awareness efforts as a team sport—one which does require sportsmanship in order to make the game an enjoyable experience for all who take part. Yet, we have organizations and individuals out there who seem to feel that the lupus territory isn’t big enough for all to make a contribution in their own way, leading to exclusion, bickering, competition and chaos.
You know the saying, if it walks, quacks and looks like a duck, then it’s a duck? Fortunately, we have determined what a duck is through scientific study. With lupus, we seem to be quacking over who is doing better at offering support rather than agreeing that it will take a flock to make a dent in the work to be done.
Lupus isn’t really about agreeing, though, is it? We don’t agree on what the initial symptoms should be, what medication works, what level of support we will experience, which doctor will work with us, or which management approach will succeed in gaining remission. We don’t agree on which logo is right, which month is Lupus Awareness Month, which event is more important, whose perspective is “healthier” or which foundation is deserving of our hard earned dollar.
While in the grocery store checkout line a week ago, I was speaking with a gal about lupus events here locally and the man standing behind us felt compelled to chime in with the comment “Oh great, another group of sick people begging for my money! Why is it that there are so many of you [groups] asking for money when there is only one disease?”
That comment was not entirely out of line and reminded me of the scolding I give the ducks. There is enough space and all will get fed to some degree either today or another day. There is no need to compete or bully, but there is a need for everyone to play nice so that the whole experience is a good one for all involved. For those addressing lupus, cooperate and appreciate the variety that is being brought to the experience: the mothers, the ones who are more ill, the newbies, the veterans, the out-of-towners, the “bird of a feather” who’ve come to “flock together.”
Seriously, we do have the brain capacity to reason and lupus awareness, support and advocacy is a huge territory to cover. If everyone would take a good look at their mission statements and consider for a moment why they advocate in the first place, I doubt anyone will find “…to peck the living daylights out of the group next to me while I feed.”
If your purpose as an individual or as a foundation is strictly to bloat your ego like a duck who has gulped down too much corn, then no wonder there are people standing in grocery lines watching the display and withholding their gifts.
With all the uncertainty regarding lupus, there is a tremendous amount of room to bring in ideas, thoughts and services to help strengthen resource options. If you offer one form of service and another group offers a different resource, see it as an opportunity to collaborate rather than a reason to squabble. Every lupus patient, every lupus experience, requires flexibility and creativity. That means cookie cutter approaches to awareness campaigns are limiting and useless to those who fall through the cracks. Is “…offer support gaps” listed in your mission statement, too? What happened to honoring those unique individuals who you are claiming to serve?
What do you readers out there think? My research and conversations show that there are few of you who are interested in becoming members of lupus organizations. For whatever reasons you may have, I’m sure they are good ones. Budget constraints? Lack of interest? Prefer anonymity? Frustration in lack of service?
How do you view lupus awareness efforts here in Oregon and nationwide? What thoughts come to mind when your hear someone asking you to donate for their event or organization?
Your feedback is important and may help get our available resources into more reasonable order. Let them know!
