Both Sides Now…

It’s four months since I embarked on, what I think of, as retirement “light” from my role as Deputy CEO of Scottish Autism.

Whilst “The Wee Room Autism Consultancy” has, relatively recently, been released into the wild, I had a few pieces of work lined up and have, therefore had a glimpse of what this very different way of working and living is like.

I want to reflect on these first few months and share what feels different.

Perhaps the most obvious difference is that I no longer walk with the reputation of a national organisation beside me, at least not to the same degree. I suspect in these early days, I am still strongly associated with an organisation that I had a very visible role with for many years, but I expect that to diminish over time.

It’s an odd one. That’s where I grew my experience, and, indeed, where I grew up. I had a safety net of people, who all worked for a common cause and had a shared vision. At the risk of going full on Bridget Jones, it is rather odd to now be all by myself (although, I am not quite).

I think many of you will recognise the pressures that come from a job role that means you are, in effect, constantly on display and all the responsibility that brings. I don’t miss this aspect at all. Whist I love a good spar in a meeting or using the platform media exposure gives for the cause, it is surprisingly liberating to not have to undertake any of that work. Centre stage can be exhilarating, but it is burdensome and exhausting.

So how does it feel?

Pretty good overall. There is a loss of the protection that being part of a large organisation affords. Policies, resources, and systems, whilst, at times, infuriating, provide a framework for decision making and for taking appropriate action in a whole range of circumstances. Cherry picking the good bits was never an option but now that feels more possible. There were many “have tos” that often taken my attention from the issues I wanted to get stuck into. There were people who needed my input, there were obligations on my time and energy that weren’t always that interesting or rewarding but, they came with the turf.

“I have been concerned that some “bright spark” would have the idea of re-opening institutions to provide care for disabled people. To see such proposals unfold on social media was, frankly, horrifying. “

I guess that’s the main thing that hasn’t changed for me, the cause and all the issues that surround it. For some time now, I have been concerned that some “bright spark” would have the idea of re-opening institutions to provide care for disabled people. To see such proposals unfold on social media was, frankly, horrifying. Having met many people who suffered in those settings and whose lives were stolen from them, it was sickening to see these ideas articulated. I only hope we can continue to hold off and block these draconian thinkers. Of course, there are many autistic and other people still in inappropriate, punitive institutional settings, but we cannot allow that to become the default position. These ideas come when we lose sight of other people’s humanity. I would argue that when you start to think that way, you have lost sight of your own. I have long felt that if services were developed using the sole criteria of “would I want this for me, or someone I love” then social care might just have a chance at delivering what it should for our fellow citizens. However, that’s not the way the world works so we must continue to challenge crisis led decision making and work for proactive support to enable people to lead an authentic and good life by their own measure.

I also see that significant and important decisions about education continue to be debated and pontificated upon by people who have no experience or expertise whatsoever. I won’t directly comment on that council meeting that hit the headlines across social media in the UK. It was shining example of very dangerous group think and how decisions are potentially made on misinformation, personal bias, and assumptions. (OK, you got me, I did directly comment on that meeting). There are those who see increasing diagnosis of autism and ADHD in particular as some kind of ticket to good time city. As if families are presented with the keys to the kingdom when a diagnosis is given. It would be laughable if it weren’t so serious. And, it is indeed, extremely serious. I have argued long and weary for systemic change, I have no doubt that is needed. However, what is becoming increasingly clear to me is that values, knowledge and humility (or lack of) of decision makers is becoming an increasing risk to the rights of autistic people and others.

What I can do about that from this side remains to be seen.

What it does do, is affirm for me that we need to have a thriving third sector that not only challenges and campaigns for human rights in allyship with those with lived experience, but that provides the highest quality services possible to those in their care. This, of course, circles us back to the systemic change needed to build and sustain a sector that, at the very least, has parity with public sector services. That still feels a very long way off but the clamour for it gets louder by the day, the necessity for it is obvious to those who have insight into what it is really like to try to obtain even the most minimal support. That struggle certainly isn’t helped by baseless speculation as to the motivation of concerned parents and others.

So far, the view from the other side of retirement is, at time depressingly similar to when I was chipping away in my full-time career. However, my part is now decidedly walk on as opposed to centre stage. That feels good enough for now.

I hope Joni will forgive me borrowing the title of her beautiful masterpiece, but it seemed the right fit.