One of the things we are most proud of is our name. Stand Up For Downs.
When we were first brainstorming different names, many ideas came up of course. Comedy For A Cause. Laugh It Up For Downs. Hilarity For Charity(we loved this, but some guy named Seth Rogen had already trademarked it). And I'm sure there were many others.
Than, it hit us. Stand Up For Downs. It was like a lightning bolt coming out of the sky. What a perfect name. 'Stand Up' was a reference to what we will be doing - comedy. 'Downs' of course was a reference to what we were doing comedy for. Then you had the word 'up' against the word 'downs'. It all fit so nicely. It also had a nice ring to it. Simple. Strong. Telling.
And as we grew our organization, this name of ours began to take even a different meaning, and possibly, a more inspirational one. We started to realize that it meant 'to stand up for Down syndrome'. Stand Up For Downs. Now it just seemed even more perfect. It made us think that while, yes, we were focused on raising money for the DS community through comedy, there might just be something else we can be doing with our energy. We could be finding a way to stand up for Down syndrome. Stand up for this cause. Stand up for the people with Down syndrome, the families, the organizations, the community. OK, I don't want you to think we thought that highly of ourselves. Like we were going to be THE leaders in this cause. But we were set on the idea that we would help the leaders, the medical researchers, the local support groups, the advocates, and so many others doing incredible things to enhance the lives of those with Down syndrome. Yes, we would always be standing up for those worthy organizations and for Down syndrome.
Our name also told us that we would be using our energy to help make those outside the community aware of those inside the community - their skills, their accomplishments, their abilities, their disabilities, their fights, their families, their treatment, and so much more. We would work hard with other groups to fight against the use of the R-word. And we would support organizations who looked to change laws to better the lives of those with Special Needs.
The name was pushing us towards our goals and creating new goals for us. Yes. We felt it was the perfect name.
BUT, as everyone knows, so little in our lives can actually be perfect. Our name, we have come to find out, is not perfect. After creating our organization, raising and donating a whole bunch of money in the first two years, and doing, what we thought, was a very good thing, we received "the dreaded comment" on our FaceBook page. It was in a post where we were proudly describing our most recent event and the money we raised. We had lots of comments from people - "great job", "thanks for all you do", "keep it up", "when's the next show". Those were all great and much appreciated. Then there was "you should change your name". What? We had no idea what that meant or why they would say that. Then a few people clicked 'like' on that comment. What? What? How could this be? Change our perfect name? Why would we ever do that. Then another week went by and we posted something about an event we were doing. Another comment about our name. "You know, you should really say Down syndrome. It's wrong to just say Downs." So I went into hyperdrive to find out if our perfect name was somehow actually so imperfect it was offensive. I knew and appreciated People First language. We use it always and not just when discussing Down syndrome. We firmly believe in it. So I looked up all the rules I could on People First language. I still could not figure out how we were wrong with our name. Our board met and we had a long discussion about it. Each member of our board has a child with Down syndrome, and none of us could understand how this could be offensive. So we let it rest and decided to do nothing. Then every now and then we would receive another comment about it. Very few and far between, but still, just enough to keep me wondering and worried. I put out the question to many of my friends and some of the leaders in the Down syndrome community. I asked if and how our name might be seen as offensive. Some of those friends asked the question in their community groups on FaceBook. Here is what we learned...
From what I could gather, the issue is the use of the word 'Downs'. If the thinking is that we are saying "Stand Up for Downs People", then yes, we are clearly violating People First rules. But, never did we consider our name to be saying that. Our name has always been short for "Stand Up For Down Syndrome". We used the word 'Downs' because, quite frankly, it was much more catchy than writing it all out, and part of a successful organization is having a catchy name. We realize that the person who Down syndrome is named for is John Langdon Down, and not Downs. We also found over 30 other organizations within our community using 'downs' in a similar manner, each seemingly doing great things for the DS community. From the comments on peoples community pages on FaceBook and from my inner circle responses, we gathered that a few people thought it was mildly wrong to say it that way, but couldn't really explain or understand why. A large majority of the people responded that it didn't seem inappropriate and were not offended in the least.
In the end, and after a ton of thought, we decided to keep our name as it is and as we intended it from the beginning. We won't please everyone with it and I learned in the comedy world a long time ago, that you can really only shoot for 90% of the crowd, because you just can't win them all over. We're OK with that. I should also stress that we're not dead set in our way. If it becomes clear that this name is offensive and it is making a large group of people angry, or it is prohibiting the type and amount of work that we can do for the Down syndrome community, then we will be open to changing it.
We are proud of the name and everything it has come to mean to us. We will use it as a marching order to keep honoring our mission of enhancing the lives of those with Down syndrome. At this point, less than two years after our first event, we think we have done a pretty good job of that by donating almost $100,000 to some incredible organizations. We hope that those who support and follow us will appreciate that above all else.
And that is the story about our name.