One of my most vivid childhood memories involves Labor Day weekend.
Not so much for barbecues and baseball games, but for a three-day telethon in support of the US Muscular Dystrophy Association. My mother was an avid viewer of this annual celebrity-infused fundraiser, and I’ve yet to ask her why (although I’m sure she’ll now tell me, because I know she’ll read this). If I were to hazard a guess, I’d say it was down to the entertainment and the novelty of seeing how shit Jerry Lewis looked after having lost two solid nights of sleep for yet another year. If you’re imagining the Griswold’s Christmas turkey you’ve pretty much nailed the look.
At any rate, the format of the programme meant that over that long holiday weekend, between celebrity appearances, he’d interview a veritable conga line of fundraisers, as they’d introduce one after another person with some gut wrenching backstory, expressing how utterly ‘needy’ and ‘inspirational’ they all were. Tearjerkers galore. It always made my stomach churn.
He’d sing “You’ll Never Walk Alone” to close the show. It touched my mom’s heart. It touched many hearts. It still does apparently, because it seems to still be going on. Despite old JL passing away, it seems to be new host, same show, if Google is to be trusted.
And here I doubt my mother ever called in and donated a dime (money was tight back then), but when those giant checks came out in the loving arms of their fully suited and booted purveyors, who grinned and gurned at all the good deeds they’d done to somehow pull together a donation of twothousandeighthundredseventysixdollarsandfortytwocents to help those poor, troubled, needy, helpless children, I always felt ill at ease, but could never quite put my finger on the reason.
Fast forward to 2002.
I started a new job here in the UK on the one year anniversary of 9/11, getting stuck in after swabbing away the tears in a conference room with my new colleagues. The work was to do graphic design at a charity aimed at supporting elderly people who were once well off but had come upon hard times. What I mostly remember about that job is that I had to hike up and down four flights of stairs for a cigarette, and I could look out the back window and see Margaret and Dennis Thatcher having tea on their deck every morning. Even got view of the blue suit once.
But the job itself wasn’t a good fit, and due to the ‘you are on 2 months probation and so are we’ setup I actually let them go, and we parted company. They don’t even appear on my CV, it was that uninspiring. This begging game, ‘be sure to bold face and underline that sentence, and use the picture of the woman frowning, that’s the one…’
Jesus wept. (But I don’t want to.)
My son was born ten years later, on a freezing February day in a freezing hospital which was under the watchful eye of the CQC due to repeat failings. I’ll not repeat the journey carried in my blog from day dot, but I look back now and largely see ableism screaming and glaring at me from every page. That deep-seated need to prove the doctors wrong, to celebrate every triumph with the copy equivalent of an oompah band, to prove to people reading, to all of society, that he has worth. That he isn’t nothing, that his life is deserved and he is someone to be cherished and treasured.
Who has to say that about their child? If you’ve ever, I’m with you. I hear you.
Still, why did I have to demand all that? What in the hell did I have to prove? Don’t all lives have inherent value? Don’t we all bleed red?
47 chromosomes. 47.
Look at that, some combination of number and letters that has the most inordinate power within them. There was a time that number and those letters meant absolutely nothing to me.
Today they are everything.
Join me now in 2022. What a galactic shit show.
What has always given me the illusion of community has become a giant digital dodgeball tournament, all because a handful of passionate support groups said enough is enough, “the state of affairs is shit, and it’s actually ridiculously easy to support our kids. Let’s work together to shake the tree.”
And would you believe it? Someone listened.
Someone listened.
This is not the doing of any national charity.
This is not the result of some specific long-term campaign and politicking.
This is what it looks like when grassroots activists set out to change the world…
…and get lucky.
The Down Syndrome Bill was the result of a Private Member’s Bill by MP Dr Liam Fox, and largely a result of the luck of the draw. Like, for real, he came up in a ballot.
A ballot. I can’t even get into the London Marathon on a ballot.
People, this shit does NOT happen to our community. Rukai and others like him have perpetually been at the bottom of the food chain. The NHS tests pregnant women to eliminate people like him. No one wants a Rukai. I certainly didn’t want a Rukai. And that kills me now because I know better. My favourite human. No grudges, no bullshit, no ego.
But why? Why didn’t I want a child like him?
Jerry bloody Lewis. Him and his ilk.
What is the point of the great big pity party? How much does that kind of peddling misery inform societal beliefs as to what brings value to a human being? Answer: zero.
I see someone keep banging on about how it’s not ability that gives a person value, it’s love. Actually, that’s a festering crock of shit. Are abused children lacking in value? Are orphans lacking in value?
Existence gives a person value. Love gives a person comfort.
And despite what we know to be truth about spectra, kaleidoscopes, fucking pinatas, whatever you want to call that great big mix of differentiation amongst people with Down syndrome, they all have worth. Capability doesn’t even get a look in.
What capability does is to counterbalance that negative pity party shit still so endemic across our society.
Ten years ago I raged against the machine. Hell, I raged against the bloody sun rising every day when my son was younger, “how DARE you think he’s less than?! How DARE you!!” That anger just dissolves your humanity. That serves nothing but your need to rage. Rage is not a positive emotion. And I guarantee you as sure as I live and breathe, shouting someone down will not bring them on side. Demanding people to recognise your issues when they are of zero concern to Everyman, is bloody unrealistic and you are the Grand High Exalted Rainmaker of Cloud Cuckoo Land.
But here’s that weird life Venn diagram rolling in again. I’m an ultrarunner. I’m bloody slow. I run some and I walk some and I train a lot. A LOT.
I have a realistic expectation that 1) I entered the game too late to be an elite but I sure as hell can become the best version of me going, 2) I will likely never win a race, but I’ll be damned if that prevents me from entering the ones I want to take part in, and 3) The only way I will make progress is to be patient and not expect success. Despite how much you feel you deserve success, if you want to finish a race you have to start slow and to keep moving until you reach the end. Sometimes you go alone. Sometimes you have company. There is no entitlement in ultrarunning. There are no guarantees.
Sometimes you are progressing in the daylight and sometimes in the inky and starless void of night.
Oh life!
But lo and behold, it’s that last bit that is the most important, that thing that the modern peddlers of misery refuse to accept. That every forward step is a move towards something better, even when you cannot clearly see where it is you are meant to be going. You go.
You go.
That tearing something apart because you don’t see immediate benefit to yourself is not only selfish but it is the surest way to fail completely. We rise by lifting others. Boat analogies welcome.
You can rage against the machine. Or the community. You can cry it’s unfair and why not me, I want it all and I want it now. You can scream about division but in the screaming it is you doing the dividing. There is no entitlement to joy, you have to seek it.
Sometimes even earn it.
If you choose to peddle misery you will only find yourself surrounded by the miserable.
