Science seems to have become quite cool. I am not really into it but I am trying and I can now listen to a good 10-15 minutes of Brian Cox without him losing me. I think I was probably put off by science by a series of awful science teachers at secondary school. In fact my only really vivid memory of any taught part of science is the image of a bottom set of dentures of one the science teachers flying across the classroom floor as the teacher shouted ‘Booooth’ at a lad called Carl Booth who as I recall was trying to set fire to a rubber shaped like a hot dog on a Bunsen Burner. However over the previous months I have found myself fascinated by the moon landing science stuff. Its probably because its history mixed with science that’s got my attention but either way, I have been hooked. The size of the task for 1969 technology followed by clips of the world watching in wonderment when we put a first foot on the moon is really something.
Last week I drove to my parents house and on the way there I drove passed all my old stomping ground where I grew up. As I came around a bend I saw an old church where just behind it I had my first kiss (or snog we called it. There was a clear difference between a kiss and a snog!). It was in the summer between finishing primary school and attending secondary school. It was a real first. I ran home after it. It was the start of something. A change had occurred and it felt great and exciting and made me feel alive. That’s what firsts do. I have been reminded of the excitement of firsts over the previous few weeks in the run up to the book launch. First book (eek!), first book launch, first time talking to a publisher, first time anxiety that everyone will hate it – all exhilarating, blood pumping, life affirming first experiences – its my first landing on the moon.
I am brought back down to earth with a bump when I think about the adrenaline of first time experiences and how people in social care land experiences them – or rather don’t. In nearly 30 years working in social care and then social work I have seen very little of life enhancing, positives firsts for people who are known to statutory services. I hear and read about firsts for people with learning disabilities but if I am honest they tend to be enabled by amazing parents & family members who see their loved one as just that – someone loved and someone who can love and someone who must experience life and life’s firsts. The experiences are usually facilitated by loving family members and despite social care, not through it. Houston we have a problem and the problem is me, us and social care.
So heres a few firsts of mine in my life outside of social care and how I think they compare with social care land. I will stick with the snogging theme for now. First loves are really common. I have mentioned before in a blog how the Wedding Present Song A Million Miles really articulates that first flush of a relations. ‘Kept bursting out with laughter all the way home, I had to tell somebody and you happened to phone. Cant think of anyone else no matter how I try and you know I cant even remember the colour of her eyes’. Do you remember not being able to eat because you’re in love or being able to sleep? And then the first few weeks of a relationship. Staying awake all night. Talking. Anything. Just been with the person is all that you need. I am ashamed to say that in my working life I have seen next to nothing of this for the people I am paid to support and less so since I have become a social worker. First loves don’t seem to happen and if they are they come accompanied with words that I have never associated with love and relationships in my life outside of social care. Words like risk, inappropriate, capacity, grooming, boundaries. In fact the first sign of any sexual awakening with young people with disabilities is met with such hostility its clear that in the world of social care, its really not safe to experience this first. A life lived for a person with learning disabilities which is relationship and sex-free is, in my experience, significantly safer for them than the trauma of social cares involvement, knowledge, interference, humiliation and censor. What’s the point of making someone safer if it merely makes them miserable is the question? We are very often pretty much ok with miserable in social care land, it keeps us in work.
My first job was important. I worked in a petrol station on the M62. It was pretty awful for most of the time. The only good part was that I got to serve gallons of 4 Star to a number of pretty average televisions personalities that happened to be passing between Leeds and Manchester (Lenny Bennett’s hair had to be seen in real life to be believed). But the job was so important to me. The wage was terrible but I can’t remember it mattering that much (ok, I may be overly romanticising here). The massive buzz of the first job was the friends, the banter, the culture, the anecdotes about other crap celebs we’d served and how awful they were to us, the possibilities and the hope for promotion or a job somewhere else. A huge first. I have worked for 3 local authorities since qualifying as a social worker. I have worked for 5 or 6 housing associations or support agencies prior to that. I have never once seen an adult with a learning disability working for any of these organisations. What’s more I have never once seen an adult with a learning disability in social workers office apart from to attend a meeting about themselves. So first jobs are not really on the agenda for adults with learning disabilities.
First time buyers. Consumerism. That pull we get to spend our well earned money and the status and kudos that comes with it. First bank account. First credit card. First loan. All these things have been important milestones for me without me even really noticing. The status in society that Wolfensberger talked about over 40 years ago is absolutely wrapped in this. Whether we like it or not much of how we are perceived in society and how we grow is related to financial status. I have read numerous critiques of this from the great and the good bemoaning the fact that we shouldn’t judge the lack of status for people with learning disabilities with their access to capitalism as capitalism needs to be smashed. Yes, it probably does, but what a twisted argument to say that we shouldn’t campaign for people with learning disabilities to have access to financial status because the model is a corrupt westernised flawed ideal while we sit there in our comfy armchairs enjoying every single trapping of a system they cannot have access to because we think it needs smashing. The very idea that people with learning disabilities should be on the property ladder and benefitting in the same way as many of us may be on the radar somewhere in the country. But I will be honest, I haven’t seen it. I haven’t met any first time buyers who have learning disabilities.
My son and his partner have just become first time parents. The congratulations, joy, generosity that they have experienced from others has been absolutely wonderful to see. I contrast this with what I have witnessed over the previous years in my job where adults with learning disabilities decide to also become first time parents. For the love and hope for the future I have seen bestowed on my child I have seen equal measures of incredulity, ‘professional concern’ and downright disgust at the thought.
There are of course lots more firsts that people with learning disabilities experience. The first safeguarding alert, the first lie about them in a communications book, the first humiliating experience at our hands for having the temerity to try and experience their own positive first without our say so or support plan or personal budget and risk assessment.
As President Kennedy said the first landing on the moon was hard and that’s why they chose to do it. And 50 years on that’s where we are at in social care if we want people to experience the life changing, exhilarating, risky, stomach-churning firsts that we’ve all had – its going to be hard, really really hard. It shouldn’t be but it is. It must start with the honest conversation about why the first times for people with learning disabilities and we have to be able to live the answer to the question of why its hard being quite simply its because of us. The taken for granted assumption that social care is good for people needs a clear evidence base and that needs to include ‘how many firsts’ it supports compared with how many ‘nevers’ it ensures. At the moment the ‘nevers’ are massively beating the ‘firsts’.
Houston, we have a problem… but we can fix it.