I have no doubt that this post is going to make me seem like a great queen bitch, but yesterday was Martin Luther King Jr Day, and as he so famously said, “our lives begin to be over the day the we are silent about things that matter.”
One thing that matters a lot to me is accountability.
Blogger Kelle Hampton is raising money in honour of her daughter Nella. In case you are not familiar with any of this, her daughter Nella is the small person whose birth surprise gift of an extra chromosome rocked Kelle’s world and sprung from her the famous birth story. Well, it seems that Kelle raises $100,000 for each year that Nella has been brightening the planet: when she was one year old, it was $100,000, 2 was $200,000. This year she is 3, so yeah, that means $300,000.
Every penny of the money is given to the NDSS, the National Down Syndrome Society.
This is the part where I start squinting.
You see, Kelle created a great little clip of a video. Well, to be honest, it just seems like it was great – it didn’t have captions and I couldn’t hear a lot of it because of the music. The music was fun and the rest of the video seemed really spot-on; I liked all of the people with Down syndrome speaking for themselves. I do wish I didn’t have to rely on lip reading to get what I did of what they said, but there you have it.
Anyway, the video is here, In the text after the clip, she goes on to talk about how she’s trying to “raise awareness” and “create opportunities” for people with Down syndrome with all the money that is being raised.
“Raising awareness” and “create opportunities” – two fantastic little phrases that can be so vague and yet sound so great.
Hey, let’s “raise awareness!” Let’s raise a whole bunch of money and “create opportunties”!! – only, if you follow the links to the NDSS site, there isn’t any mention at all of how the money is actually used or any type of accountability whatsoever.
It’s like this happy pit. You can throw your money in, “$5 for every time you thoughtlessly used the “r” word”, as one woman commented on instagram. You can do it to feel good, feel better about yourself, about “opportunities” for people with intellectual disabilities. Give your ten bucks, you care, you are a good person.
And NDSS is that bastion of greatness, right?
It might be so and it might be that I’m a horrible, terrible, no-good person to even be asking these questions, but I would dearly love to see a little transparency in this. I’d like the NDSS to have a spreadsheet showing how they used every dollar that was donated in the name of Nella, and prove how those dollars actually have “created opportunities” for people with Down syndrome.
Don’t get me wrong: I want those opportunities. I want that awareness. I want the happy and I want the full money pit for people with Down syndrome. Maybe that’s where these questions are coming from – I want something from the NDSS proving that they really are using it for the reason people are giving it.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.