Tuesday, April 2, 2013


Gonna keep this simple.  No names spoken, no finger-pointing, nothing complicated.  This is a topic I've thought about with more and more frequency over the last couple of years, a topic that is now nearing the front line, most recently in the wake of the death of Robert Ethan Saylor.  I'm no expert here, and I certainly don't profess to have all the facts, but I'm gonna throw it out to you to mull over.

We need to work *together.*

All across the country, across the globe, even, there are Down syndrome organizations, big and small, who each have a plan to work hard to fight for *awareness*, for *services*, for *opportunities*, for *research*, for *action in the government houses*. 

But that's the problem. 

They each have their own plan.  They each have their own fundraising sources and schemes, each their own budgets outlining what to do with the money raised, keeping in line with their own goals.  They each have their own ideas of how *awareness*, *services*, *opportunities*, *research* and *action* can be achieved.  And they each go about it in their own way, oblivious to the efforts by other organizations that may be working in tandem or, frighteningly, against their own. 

There's a disconnect, a fracture, and it's counterproductive to the cause(s).

Think about it.  Doesn't the voice of many speak louder than the voice of one?  And the voice of many, in solidarity, speaks louder than the voices of many, in all their individual bits and pieces.

Trying to think of an example here...  Okay.  You're a city planner, wanting to build a road through parkland.  People aren't thrilled about it, and let you know, each in their own way, one by one.  An e-mail here, a letter there, some in-person as you pass each other on the street, each with his or her own solution.  One says to build an overpass.  Another to dig a tunnel.  Yet another to put it off for another year.  Then you get a petition signed by 10,000 of the town's most influential people begging for the road to be built on-schedule, a petition that outlines the massive benefits to the economy, the employment numbers, ecology (yeah, not sure how that would work, but this is just a lame example).  I'll be damned if I'm going to listen to the rabble that's been trying to bend my ear in dribs and drabs, and go with the stronger voice, the more compelling one.  And stuff gets done.  The road gets built, transparency allows for everyone, supporters and naysayers alike, to see exactly what the costs and benefits are, the job market soars, and, most likely, most people are happy.

Like I said, lame example, and I think I may have actually done it wrong here, possibly making the wrong point altogether, but I think I kind of got the idea across in some way. 

We need to work together to achieve our goals.     

As it currently stands, we have organizations that lobby, organizations that fund research, organizations that raise awareness, etc.  And as it currently stands, the vast majority of donated money goes to the most popular organization(s), regardless of what it is that they actually do (and I'm not saying they don't do anything).  But the others are forgotten, smaller voices struggling to be heard, voices that could all be joined together with the larger ones to ensure that funding is divvied up in the most productive way, to make things happen that need to happen for people with Down syndrome and the world's population in *general.*  (more Alzheimer's research, anyone?)

I brought up the death of Robert Saylor in the first paragraph because I think more and more people may be seeing the problem these days.  Some highly-influential organizations didn't respond at all, or responded late with a lukewarm call for action (their reticence no doubt politically-motivated by controversial donation sources in this case), some responded with more decisive courses of action, calling for justice and solutions to prevent future issues like this.  Politically-motivated?  Yep.  Not politics in the US government sense of the word, but politics in the more self-serving, knowing-which-side-their-bread-is-buttered-on sense of the word.  Silly that that should happen, when what we want is supposed to be for the good of others (our loved ones with Down syndrome).

I'm not saying anyone's wrong.  I'm just saying that we should be able to pool our resources and efforts to achieve the common goal, instead of wasting the precious green lifeblood that runs through our wallets on the failed attempts by those small voices with big, important dreams that get squashed before they even have a chance of coming to fruition.

I'm not one of those people who can brainstorm a solution.  Not even close.  But in getting this out there, I know that some of you super-smart people will start thinking about this, too.  Will reach out to your own connections.  Will keep this in mind when achieving positions of influence within your own organizations.

There's got to be a solution to unite everyone, to get us all on the same page, to get us working together, rather than in this fractured state of counterproductivity.

And, in the immortalized words of Rodney King, "Can't we all just get along?"

This won't be the last I write about this.


Kerri Ames said...

You have such an awesome point. So many working their own agendas, yet they all want the same results. I think you are so right that the many factions end up diluting the voice of the many people who are outraged.

Great post!
PS--I linked you in a recent post. If you would rather I remove it let me know :)

CJ said...

We SHOULD be on the same page. However, while we all have a child with Ds that unites us, we also have characteristics, beliefs, morals and ideals that don't unite us. Should we be able to put that aside and work together? Yes. But "we" can't even agree on what needs to be done, how to do it or where to begin.

Megan said...

Yeah. I agree with CJ. There are many standing up speaking "for" me right now and I don't even agree with what they're saying. I agree that we could get more done if we had a unified voice, but it seems like, right now, that's a pipe dream.

Lisa said...

The first phase to getting a unified voice is making people aware that one is needed, and that's where we are. I agree with Megan above, I am wondering how we are going to get there though? What needs to happen in order for a strong, organized and unified Down syndrome movement to appear? We've got passion, and a decent amount of advocates. Now can we get a leader :)? All of the Ds organizations, big and small, have to begin to see their common ground, have a good understanding of who they serve, and begin to work in concert. No one necessarily has to go by the wayside, if they're honest about what they offer the community and focus on it. A new leader, though, is likely going to emerge. Will it be a grassroots group or a re-formed national? It's anyone's guess at this point. Though it isn't always comfortable, I am so glad this conversation is taking place among advocates. And I need to get back to blogging (this comment was far too long - sorry!). :)