A Human Uncle
Have a look at this photo. Tell me what you see. It was taken on Thursday when Uncle Wayne came to do some jobs around Steven’s new house. The young chap in the photo is Henry, Wayne’s grandson. When Henry was born, Steven was over the moon that he had now become an “uncle”. Technically, Steven and Henry are second cousins but Steven sees being an uncle as very much part of being a man, so he’s become an honorary uncle:
After the guests went home, me and one of the support workers popped out to get fish and chips and the worker suddenly said, “This is one of the happiest days of my working life”. He explained that he was moved by Steven being such an adult and being gentle and interested in Henry. Later, after posting the photo on Facebook, someone commented, “You should send this photo to Justice Peter Jackson. Let him know he made the right decision all those years ago”. Both comments had me welling up. The photo captures a tiny moment in time. A short period where Steven will be the “adult” in a relationship. In a couple of years time, Henry will sail straight past Steven and that will be that. Normal positions resumed. Henry cried when it came to time to go home because he didn’t want to leave. Steven had a meltdown later in the evening because he wanted Uncle Wayne and Henry to come back. What could be more human than that?
This week has seen the second campaign for 7 Days of Action. It has been as uplifting, joyous, infuriating, thought provoking as the last one. Rather like using a sledgehammer to crack a nut, we called this campaign “Human”. A few weeks before the campaign, I was approached by the CeDR at Lancaster University and asked to write an introduction for an academic paper about the 1st 7 Days of Action. It certainly forced me to consolidate my thoughts and when I finished, I realised that for me, just one person in a campaign team, the most important thing was to present very human stories. I wanted people to read about Eden and Robert and the others and recognise something about themselves in their stories. I wanted the readers to laugh at the wit of the dudes. I wanted to tell stories about the little things, those things in small places, like wanting to go home to walk the dog, have a cooked breakfast or do complicated maths equations with their father.
One night in the week before the campaign started, I amused myself by copying and pasting all seven of the week’s stories into a word document and removed from the text all reference to learning disability, autism – anything that usually causes people to detach and other. It made for interesting reading. I started the imagine the furore of the Daily Mail readers if they read stories about people being secluded, pinned down, forced fed anti psychotic medication, all the indignities and abuses that the dudes in ATUS are put through. But the stories would read as being about “normal” people, those fictitious types that the Mail panders to.
One thing the campaign succeeded in I feel is the bringing together of people from all aspects of Planet Social Care. On Wednesday, there was an astonishing Twitter Live Chat, attended by 69 people of all shapes and sizes and professional status. I had conversations with other parents, people from NHS England, Social Care commissioners, AMHPs and people who’d just turned up because they cared. I felt hopeful.
Needless to say, during the Twitter chat and during the whole week long campaign, there was plenty to illustrate the gulf between the professionals and the families. It usually showed up through the language. I really don’t want to hear any more about “co-production”, “complex needs”, “positive behaviour support” or “person centred planning, or any of the other distancing phrases that became such a feature of the week. There was one funny moment during the tweet chat when someone found it incredulous that I wasn’t interested in the “skills” a support worker may have before employing them to work with Steven. We arm wrestled that one for a while and then she said that the interviews could be real co-production between the person, the family and the professionals. Luckily, the indefatigable Sam Sly stepped in and said “Just the person and the family will do nicely”. The stories from the week revealed two polarities – either a complete absence of professional input or way too much. My general rule of thumb is – back off until you are asked for your input.
I’ll finish with another photo. Steven has a support team of five and only one of them had any training (“skills?”) in autism before stating working with Steven. Here they are. Those unskilled, untrained guys:
I don’t know what you see. I see six guys hanging out together. Six guys interested in each other. Six guys who make each other laugh. Six guys who would go that extra mile for each other.
Here is the paper from Lancaster University – https://www.sevendaysofaction.net/news-articles/report-on-the-first-7-days-of-action/