Today’s blog post is a guest blog from John Lish. When the first draft of the #LBBill was shared, John was one of the many people who provided feedback, and his feedback is directly reflected in, and vastly improves, the current draft of the Bill. As part of Week 10, an action week to encourage you all to write to your MP and tell them about the Bill, John offered to share a blog post about why the Bill was important to him. Here it is:
Although I had heard of Connor Sparrowhawk and his death through news reports, I hadn’t been aware of last year’s #107days campaign. It was a conversation with Claire Jones (a contributor to the Justice Quilt) during a break in our work with the Barker Commission that brought the Justice for LB campaign and the LBBill to my attention. I joined the Facebook page set up by Mark Neary to discuss the LBBill shortly afterwards.
Now, like Connor, I am on the autistic spectrum but that in itself doesn’t entail motivation or importance to this campaign. It allows some perspective and insight but the essential drivers to support this campaign are a visceral sense of injustice and a desire to see change occur that allows everyone to have the support that enables control over their lives which most take for granted.
Yet there is a personal element to my support and it revolves around the idea of time. I was diagnosed as being on the spectrum in my late 30s a few years ago. Thinking back, I can see where my autistic traits interplayed through my life such as my intolerance of adult authority figures if I thought them idiotic and would express that opinion. These days, I suspect that 7 year old would be diagnosed with ‘oppositional defiant disorder’ and my parents offered drug management of said condition. In the 1970s, I was just considered to be a badly behaved awkward git. While today’s world is different, I’m not entirely sure that it has progressed in an entirely beneficial manner.
That seems to be particularly true when dealing with teenagers who happen to be autistic and/or have learning difficulties. My teenage years were difficult for me and my family and there were periods where none of us coped with my depression and behaviour. The difference made to my family and I was the community support from the local Child and Adolescent Mental Health Service. It was appropriate and gave me the space to work through the complexities within my head.
Reflecting now on what occurred some 25 years ago, the definition of adolescent seems broader than today. The past wasn’t obsessed with the notion of “transition” that exist today and having rigid barriers between child and adult services. There was less money around as well which may seem a bad thing but given the growth in ATUs which have coincided with the pump-priming that occurred in the NHS from the turn of the century, more money appears to have facilitated more interventions with worse outcomes.
There also seems to be more labelling of conditions which is a concern when issues such as mental health problems are seen as a result of having autism for example. That may be true for some but equally we shouldn’t lose sight of someone with autism who just happens to have a mental health problem. Their autism will affect the state of their mental health but we shouldn’t assume it drives their mental health issues as the individual gets consumed within the condition. This is why clause 8 of the #LBBill is so important.
This is why I feel fortunate. Back during that dark period, I didn’t have a label of a condition. I was just a young man who was depressed, alienated and inarticulate. Importantly I was given the time and space to find myself. A process that has continued to this day. The point about autism is that its a development disorder but it doesn’t mean the absence of development, merely its a different process. Sometimes that is close to normal development or it can be very different in expression or timescales. It is always very human.
That perhaps is the hardest part of this #107days campaign. That Connor didn’t get the time and space he deserved and that absence of time is marked by this finite period. That feels very cruel.
So the #LBBill is important to me because all the dudes deserve the support, time and space to live their lives however and whatever that looks like. The support I’ve had, the time and space to explore and experience the world shouldn’t be a gift to be bestowed but simply a human right of expression. There is some distance to go but if the #LBBill became an Act then it would be an important step towards achieving that.