Here Alicia Wood shares her reflections on the #CaminoLB; campaigners, family members and self-advocates are walking part of the Camino de Santiago in memory of Connor Sparrowhawk.
Earlier this week I went to collect the #JusticeforLB crew from the ferry terminal in Santander. Sara Ryan, George Julian, John Williams and Dave Griffiths. They are here to walk part of the Camino de Santiago in memory of Connor Sparrowhawk and bring the JusticeforLB quilt, LBbus and Postcards of Awesome to Spain and exhibit it near my home town in Aviles for International Day of Disabled People- I am joining them for the last 5 days of the #CaminoLB along with several others including some of the My Life, My Choice team.
This is such a big deal for me, I am a long time JusticeforLBer and I can’t count the times I have cried at the injustice of how Connor Sparrowhawk and his family have been treated, raged at the behaviour of Southern Health and felt the desperation of so many people with learning disabilities and families experience in our so called civilised society. So much emotion over the last few years that has driven everything I do in my work, not to mention my growing vocabulary of swear words. Walking with people I admire and being the caretaker of the quilt, the LBbus and the Postcards of Awesome feels such a privilege.
I’ve seen so many pictures of the JusticeforLB quilt but have never actually seen or touched it and now it’s here with me wrapped up in the corner of my office along with a bag and envelope filled with the postcards whilst the cardboard bus is walked along the north coast of Spain. I knew that having the quilt would fill me with all sorts of joy and sadness but I was unprepared for the Postcards of Awesome.
Hundreds of postcards sat next to me in an open bag so I had to sneak a look at one, then two, then more. Such care in the writing of those postcards to a grieving family, such empathy from people with learning disabilities, autism and families who know what it feels to be ‘the other’, such warmth from complete strangers. I have been moved in a way that I find hard to put into words and I think it just comes down to good old fashioned kindness.
People with learning disabilities and their families are too often surrounded by transactional relationships, judgements, meaningless bureaucracy, laziness and a lack of care. Our processes and relationships have become so impersonal and mechanical that when we see such kindness, it stands out a mile.
On the way to the ferry, I had a call from one of our family members who we’ve helped to sort out housing for her daughter with learning disabilities. She was working with a provider who treated the process of setting up housing and support like a transactional process, they treated the families involved as irrelevant to the process, were shoddy and delayed things so much that the families had to go to another provider, one of our members, Choice Support. The mothers exact words were ‘ with ****** (former provider) it was all about money, money, money but with Choice Support, I have just felt they really cared” she went on to tell me about how kind, human and efficient the team from Choice Support are. I’m going to appreciate and highlight these acts of kindness, respect and dedication to doing what we are paid to do well more often.
I’m looking forward to doing the #CaminoLB from tomorrow and will be sharing the highs, lows and conversations we have. If you want to sponsor me as I raise some money for media training for people with learning disabilities, you can do so here