The SARG re-launch is taking place tomorrow in Edinburgh, with the theme lifespan development: from embryo to employee. This title caused an unexpected (at least, according to the SARG committee) stir among the autism community. To explain, we invited Kabie, Autistic Activist, of Autism Rights Group Highland, to share her thoughts on the SARG blog. This is her post.



I had been aware of SARG for some time but really always thought that it was for researchers only, an assumption that turned out to be quite wrong, maybe I’d fallen into a ‘them and us’ trap when there really wasn’t one.

Although interested in research I’m not a researcher myself, it’s interesting to keep up with what’s going on though; potentially research can have a huge impact on my life and that of my family and friends. This is one reason why it’s essential that we all work together and keep informed about what’s going on within research, and researchers about what’s happening within the Autistic community : as Liz Pellicano‘s A Future Made Together highlights, priorities of research carried out vs research that Autistic people and others would like to see don’t always match.

I joined the SARG mailing list and was happy to see that there was soon to be a relaunch event in Edinburgh. The title of the event though puzzled me: “lifespan development: from embryo to employee.”

My initial thought was that this was rather “off”, and immediately made me think of the usual ideas of financial productivity equating to humanity. Coming from an Autistic Rights perspective, I am used to seeing Autistic people being degraded and downgraded to the status of wealth consumers rather than wealth creators, just take a look at the work of Martin Knapp on The Economic Cost of Autism in the UK and link that to the current feelings of the British media towards disabled people often branded as expensive and a drain on the economy rather than fully fledged members of society.

To an outsider that may sound like a leap but to someone who belongs to a community still subjected to wrongful arrest, jeers in the street, allegations of being “workshy”, lifelong bullying and attempts from early infancy to change us and make us less of who we are – this really isn’t a leap at all.

I started to think that maybe this title was intentionally provocative, that the day may be an attempt to challenge ideas conjured from the title, given the nature of the event: not sociological, not autistic led, this seemed unlikely but possible because of the people behind it; I’d met some of these people and they really didn’t seem the type to come up with such an insensitive title.

I started to tell people about the event, other Autistic people immediately questioned me on the title and and echoed my first thoughts: what on earth was going through the minds of people who would think that ‘lifespan’, or anything worth saying about Autistic people ended at employment, and what about all of those that never become employees, who struggle to find work but don’t, who are self employed, retired or who are so segregated within our society would never be given the option to even consider trying to find work.

One person did point out that maybe the title had been chosen to scan well, something that sounded good. I had thought of that – at the back of my mind, but dismissed it.

So, I decided the best thing to do was to ask; I fired off an email to Sue Fletcher-Watson, someone who I already knew and was guaranteed to give a straight answer.

I decided to go with brief, and to the point and asked:

“When I first saw the (sub)title of the SARG seminar I was a little taken aback. After talking to others I realise I’m not the only one: embryo to employee. Is it intentionally provocative & chosen to illicit debate?”

Sue replied:

“Oh dear. No not intentionally provocative. Just reflecting the fact that we have a speaker talking about prenatal factors and another talking about employment and the others fit in between. Do you find it offensive? Please do explain.”

I was quite taken aback that the reply obviously meant that this really hadn’t been thought through, maybe not involving people who you’re planning to talk about isn’t such a great idea?

In my reply I thought it best to splurge out everything, the whole problem, exactly how I felt. It’s actually quite refreshing to be able to do that; to say what I thought knowing that I’d get an answer.

“Hi Sue There are a few problems with it, your explanation makes sense but still the subtitle is problematic when put with that theme: Lifespan. The implication of ’embryo to employee’ buys into the notion that worth is valued by a very narrow definition of productivity; that we are born to create wealth for others, that if we are not deemed to be productive members of society in a monetary way than we are of less, or of no value, we are erased from humanity and lack the position of being fully human by our societies. This is a general point, relevant to all but most relevant to those who face barriers to employment, including disabled and specifically Autistic people. You know for yourself that unemployment rates are high for all disabled people and worse for Autistic people (although most probably not as bad as the published figures say but that’s another discussion). Another problem with it is that it implies that employee is an end point. Many people don’t reach that point, some do but lose employment, some will never be employed. “Lifespan” should surely cover what it says, not end when a prejudged norm of maturity is reached? The autism machine talks a lot about productivity and employment. Employment is important but it misses the point that we are people, not commodities & should not be valued or measured as such. Older people also feel excluded, that even if someone has worked what then when they retire? Or become ill, or become a carer etc etc Do they cease to be? I really don’t want to get ranty, I think the above is enough to get the idea? I think that the problem is magnified because this is viewed as a usual theme: talking about us whilst not really appreciating the reality. I know that this isn’t intentionally to upset, although as I said I wondered if someone was making a point of drawing out the above themes? Kabie”

Given that I ‘didn’t want to get ranty’ in hindsight I’m not sure I succeeded.

Anyway, always keen to enter into discussion Sue replied, (edited):

“Thanks for this – very interesting and another example of my unthinkingly applying my norms to others in a way which obviously doesn’t fit. We are working on the basis that employment (in a broad sense – could be self-employed, supported jobs – something that provides enjoyable activity and stimulation which is rewarding and can confer a degree of independence maybe…) is something people want and society has a responsibility to make it available. The word Lifespan is in fact very misleading because we aren’t looking at older age-groups during this seminar *….. in this seminar ‘lifespan’ actually means childhood to adulthood but not all of adulthood. This is sacrificing accuracy for something snappy I’m afraid. I think all (SARG) members agree that there is no role today for a group of researchers consulting only amongst themselves without due regard to the perspectives and expertise of other groups.”

I was left feeling quite settled at the response and feel that I learnt something, hopefully those at SARG did too – which for me is the whole point. As I said I don’t know much about research but I do know that it can be helpful or damaging: obviously a vast oversimplification but that’s the nub of it.

So what are the lessons to be learnt from my point of view?

For us all:

Always involve the people you’re talking about; we’re not moving away from silos of thinking quickly enough: none of us are.

Say what you mean & mean what you say, really if you’re expecting people to second guess or trying to be snappy or shorthand then you’re going to hit trouble.

When someone asks a question, or points something out as being problematic or insensitive then discussion rather than attack builds bridges: take note all of those who would prefer Autistic people didn’t ever talk back! (Clearly not something I can accuse SARG of thankfully).

Always expect and be open to debate, it’s too easy to expect hostility because of previous experiences.

Never forget that our own communities do differ in lived experience and expression, that’s a positive, don’t label it as a problem.

Going to events ‘about us’ is always a bit odd, often with an overload of ‘those people’ language and outsider views but I’m looking forward to it and no doubt I’ll learn something valuable – meeting and hearing others speak whether I agree or not is always a learning experience.

by Kabie, Autistic Activist, Autism Rights Group Highland

You can follow Kabie and Autism Rights Group Highland on twitter, or checkout the ARGH website.

* editorial note: the reason for this exclusion is that SARG hopes to hold a separate event specifically focusing on older adults in the future.