#CaminoLB reflections

l1023817-2The #CaminoLB. Following the back end of a yellow shell for 8 days across the Northern route of the Camino de Santiago. Carrying the cardboard #JusticeforLB bus (made by the Boumelha family) to Aviles for an exhibition to be held on December 2. 160 kms of beautiful and constantly changing scenery (beaches, forests, mountains, towns, hamlets, woods, lakes, estuaries) and pathways (cliff paths, foot paths, dirt and gravel tracks, tiled sections, alongside dual carriageways, roads and railways). A backdrop of fresh air (with delicious whiffs of eucalyptus, rotting hay, mint, fig, lemon, orange and hazelnut trees). Constant and unexpected sunshine sometimes blocked by sea mist.

And hills… (mountains?)

Still trying to remember what joker told me the Northern Camino was pretty flat. Or maybe I dreamed it among the low level anxiety before we set off.

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Learning disabled people can’t walk (far?) was a message communicated to us in a meeting a few weeks before we set off. We’d crowdsourced £2k [thank you] to fund a group from My Life my Choice to join us for part of the journey. Sadly the language of social care diffused into everyday talk to threaten what was, essentially, a walking holiday. ‘Public liability insurance’, ‘support vehicles’ and the like, as ever working to bleakly colour and constrain the lives of so many people in the UK.

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As it was, we walked (miles), talked, ate delicious nosh, drank beer and cider, slept in dorms and laughed. The biggest [unanticipated] risks were snoring, farting, bangle wearing, decisions around the use of ‘she wees’ (we didn’t) and cheeks that ached more than legs because of hilarious contributions from John and Dave and, later, Dawn and Shaun.

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Fifteen people and two Great Danes pitched up at different points along the walk, facilitated by the extraordinary efforts of Mariana Ortiz, Alicia Woods and Henry Iles. We met all sorts of people en route intrigued by the bus. More officially we met members of a Spanish charity, Integra, and were welcomed at town hall receptions in Gijon and Aviles. A scruffy, cheerful bunch, carrying the battered but still brilliant cardboard bus, greeted by immaculately turned out dignitaries, film crews and photographers. Visible shock and horror expressed at the deaths of LB, Danny (Rosie Tozer’s son), Thomas, Nico and others.

“This is unimaginable…”

Reflection and clarity completely missing from public office/sector in the UK where LB, Danny and others were simply budgets and burdens.

There was other spontaneous support:

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And snatched moments of contemplation along the way. The enormity of why we were walking the Camino constantly with us. It was fitting that the walk coincided with the Dia de Todos Los Santos (Day of the Dead) on November 1. We marked this with (non risk assessed) late night candle lighting and tears on the beach.

l1024319-2With an irony meter the size of the hills we were regularly scaling, I ‘learned’ a shedload during this adventure. The biggy [howl] was the realisation (or  more accurately, recognition) of how I let LB down. No – no – response to this please (and don’t even go there Sloven, NHS Improvement, Jezza, NHS England, CQC, Health and Safety Executive and the like…) He was waiting for me to bring him home and I didn’t.

I also realised, or maybe recognised more clearly, that you just have to crack on and do stuff. Ditch the doubt, walk away from the blight that is big charity (non) work/public sector shite in the area of learning disability and just do stuff. Mencrap, NAS, Scope and other money spinning waste of space bastards totally miss the point. The conversations, chat, discovery, self reflection, delight and joy we shared/experienced across the journey – among those walking, people we met, and virtual campaigners – underlined this. Those who should do, simply ain’t going to. In the UK, anyway.

Spending time with Dawn, Shaun and Paul generated insights into life as a learning disabled adult. Dawn’s stories of living in a Mencrap home in the past were harrowing and her comment after an uncharacteristic stern moment – ‘Oh, I’d make a good carer’- was chilling.

I was surprised at how far we were able to walk. And the absence of complaint. There were some struggles, a few blisters and chafing (a story for another day). Endless uphill walks or clambering down rocky, chestnut and wet leaf strewn paths. I worried about the pain the walk would inevitably involve – I ain’t no walker – but it didn’t materialise. I wouldn’t advocate not training for a substantial walking trip but clearly backbone, guts and resilience go a long way.

It was astonishing how much we all gained from the experience. I don’t know whether this was the walking, the scenery, pilgrim life, the company or the underlying campaign… but there was an exhilaration, emotion and depth of something remarkable and immensely powerful. As Alicia posted on Facebook:

“It’s hard to know what to do after the incredible #CaminoLB. Such a powerful, hilarious and moving week that will stay with me forever.”

Whatever it was. It worked.

#JusticeforLB. Walking the walk.

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7 thoughts on “#CaminoLB reflections

  1. Beautiful. Those that ‘do’ are there as you know, underfunded and undermined by the ‘Big Boys’…the nationals that have become business. And the best have people with learning disabilities at the helm. It is right. It is the way it should be. Xxxxxxx

  2. You might like to read Melanie Gow’s ‘Walking with Angels’ when she followed the route photographing as she went. Yes, not smooth all the way!

  3. Beautiful,
    maybe the words are half formed as you say, but the depth of your emotion and long fight you have had are pouring from your writing. Thank you Sarah, I want to hear more x

  4. Great journey, and better for having people with learning disabilities there, as they’re kinder people.
    Yes, social care language left in the UK must have been lovely.
    It’s good to go away, and think.
    And the charities, all started by brave pioneering parents – for another blog.

  5. Pingback: Of rage and light… | mydaftlife

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