By Nicole Feeney
I signed our family up for a charity walk. We registered five family members and it cost $80. Now I know some of that $80 will go to overhead to cover the cost of the walk, but I also know some of this will go to the organization; a really worthy organization that helps individuals with a particular disorder.
But as I was reading the promotional material for the walk I got really annoyed. Without mentioning the specific organization (as it’s no fault of theirs), let me explain what I mean.
The charity walk is intended to “raise funds and awareness to promote acceptance and inclusion of people with [this disorder]” (names have been changed to protect the innocent). Funds also support the “state’s leading provider of information, networking opportunities, and advocacy for and about [this disorder]. Support allows the organization to continue supporting, enhancing and expanding opportunities for individuals with [this disorder].”
Why did I get annoyed? Well they just described my daughter Shelby and all I want for her. Yet sadly she was born with the “wrong” rare disorder and thus won’t be in their sights. Some of our rare kids aren’t going to be the recipients of these funds and advocacy because their efforts only go to one type of individual.
Then I kept going down the rabbit hole. What about that other organization that “Speaks”? One of my other daughters has Sensory Processing Disorder (SPD), and quite often her issues mirror those of puzzle-piece kids. Sadly she will also not receive the funds and advocacy that that large organization generates.
I took my frustration to a friend: “Am I right to be annoyed? It seems like we are dividing resources. Why are we doing this? Why can’t we just have two big camps? Surely the ‘disorder organization’ can just open up its scope and cover all our rare and medically complex kids! And why can’t the ‘speaks organization’ represent all kids who may have similar Non Verbal Learning Disorders (NVLD) or sensory issues? I think we should just go back to using, embracing and identifying as Special Needs!!!!”
This friend is so wise. I’m older, but she is wiser. I love her and not just because she agreed with me, but because she gave me something new to think about. Her response was: “There is no need for two camps. Why divide ourselves between the medically complex/genetic stuff and the sensory/learning disorder stuff? We all have the same need. Our kids all need support. What if instead of thinking of our kids as having Special Needs, we think of them as needing long-term support?”
Her not-quite-a-puzzle-piece kid and my not-the-right-rare-disorder kid will both need the same thing: long-term supports.
Imagine the utopia of one pool of resources to meet our long-term supports! Imagine no longer having two or three state agencies to tap for respite or equipment requests!
And let’s imagine further… imagine not falling through the cracks because your child doesn’t fit the perfect definition of any of the state agencies or charities designed to help kids with specific disorders or a particular set of needs! Imagine a world where even kids who are undiagnosed but are clearly in need of support can still find the help they need, even without checking the correct boxes!
What do you think? Do we keep the niche charities and organizations to advocate for only one type of diagnosis? Keep the niche organizations, but only for the purpose of scientific research for that one diagnosis? Do we drop it all and unite under the banner of “long-term supports?” Is it too daunting to start building the awareness that regardless of the type of need the end result is the same, long-term support?
Food for thought from a delicious can of worms. Enjoy!
Nicole Feeney writes about how God grew the Feeney family from two to four to five in two quick years… and the subsequent adventures on her blog, Fab Feeney Five.