1 in 5
people in Scotland identify as being disabled.
I suspect that since you’re reading this blog then you probably know
that stat thanks to the campaign 1 in 5 founded by Jamie Szymkowiak. I was & am quite proud that my branch,
Leith Walk SNP, was the first branch to sign up to the cross party “campaign to
encourage, empower and increase political participation amongst disabled people
in Scotland.” If by some chance you’ve
not heard of it then please follow the link at the end of this piece. Although the campaign is a cross party one,
the very ethos of it is a tenet of our party… Inclusion. The First Minister said it herself just a
few weeks ago at National Conference "Inclusion is the guiding principle
for everything we do".
That was
just one of a couple of things at Conference that got me thinking about writing
this. The other was a fringe meeting
organised by The National Autistic Society Scotland. I’ve been to a few fairly memorable fringe
meetings over the years. I’ve been lucky
enough to hear Jimmy Reid speak at one.
I saw Wendy Alexander brave a packed room of SNP members in
Inverness. But the Autism one was
without doubt the most profound I’ve been to.
The main bit of the meeting was for a service user of the Society,
Michael, to have a chat with the government minister responsible for the
Scottish Government’s Autism Strategy, Jamie Hepburn MSP. During this chat Michael described his
experiences as someone who was diagnosed as an adult and particularly the
issues he has in employment. He recalled
an occasion a while after his diagnosis where he met another guy who had been
diagnosed as Aspergers/Autistic as an adult.
Michael had asked him what the diagnosis meant & he’d replied he
didn’t know, other than that he’s got it.
That might sound a wee bit odd.
Most people with a condition, disability or illness could tell you
exactly what the symptoms are. The symptoms
are usually quite obvious. But Aspergers
& Autism are spectrum disorders.
That means they affect folk in different ways. I often find it difficult to explain
too. I’ll try to give some examples of
the issues I’ve faced.
Let’s start
with the most obvious one. Obsessive and
repetitive interests. There’s a common
phrase that I’m tempted to use here referencing Sherlock. Politics and particularly the SNP have been
my longest standing obsession. No bad
thing, most of the time. But it has
caused problems. In 1997 I should have
been studying for my Highers. I didn’t
and my results are testament to that.
The reason I didn’t is because I was too busy campaigning in Stirling
for the SNP. Now don’t get me wrong, I
have some fantastic memories from that campaign. I learned a lot during that time from some
great people in the party. I got to see
Michael Forsyth lose his seat at the Stirling Albert Hall and his losing speech
was a spectacle of the like I have never seen in politics since. I even got to meet a childhood footballing
hero, albeit he was a Labour supporter, at the count. The sensible thing at that time would have
been for me to be studying for my exams.
But I couldn’t see past the campaign.
To this day politics is far more than just an interest for me. Almost every conversation I have ends up
being about it. I do have other
interests. But none are really just
passing interests. To say I’m a Steve
Mason fan is an understatement. I own
almost everything Steve and The Beta Band have released. I am a Hearts fan. There was lengthy period of time when I
didn’t miss a single game. If I missed a
game or if we lost (which was fairly often to be fair) it would seriously
affect my mood. I’ve talked before about
being a news addict. I’ll quite happily
sit in front of rolling telly news all day long and have been known to spend
entire weekends gripped to the screen.
My book collection got so out of control that I have boxes of books
sitting at my Gran’s in Stirling. The
very thought of scaling down the collection makes me nauseous. Most of this seems harmless enough. But these obsessive interests certainly
played a part in my dropping out of university.
Yet again it was primarily party stuff that got in the way. The other major problem at uni was the fairly
severe depression I was suffering at the time.
I’m not going to delve any deeper into that particular subject
here. It should however be noted that
depression & anxiety problems are more common amongst those with spectrum
disorders. That’s not to say that it is
not common amongst those not on the spectrum.
That would be daft to suggest, especially when 1 in 4 will suffer from a
mental health problem at some point in their life.
There are
other symptoms I want to cover here. The
one that got me to speak to my GP about things & that led to the diagnosis. I often have trouble reading social
situations. I love branch meetings. There is the fact that I’ll be sitting in a
room of people who all just want to talk politics. But it’s also that there’s a structure to the
meeting. It’s quite obvious when I can
talk because there’s a convener controlling things. In situations where there is no convener it’s
often not so obvious to me & I will get it wrong from time to time. When I do get it wrong I’ll have it running
through my head for quite some time afterwards and often it will be over the
most insignificant incident. The sort of
incident I’m thinking of can be a minor as trying to speak to someone when they
are mid-conversation with someone else.
It just comes across as being a bit boorish or rude. I really don’t mean to be. But when to enter a conversation isn’t always
as obvious to me as it should be.
I think I’ve
made clear that the problems I face on a day to day basis are life-long. Yet I only got my diagnosis at the age of
32. The diagnosis process consists of
very in depth interviews with a psychiatrist.
It took place over several months as each interview was 2 to 3 hours
long. I cannot speak highly enough of
the doctor who conducted mine. Once the
diagnosis is given I was directed to a charity, Autism Initiatives (AI). Yet again, I can’t speak highly enough of them,
which is lucky as 4 years later I work for them as a Support Worker. However from an NHS point of view I was on my
own. To be blunt, that’s not good
enough. Especially in the immediate
months following the diagnosis I felt I needed support from the state of some
kind. I was given very little
information about what the diagnosis actually meant. This comes back to the comment made by
Michael at the fringe meeting. It was a
few months after diagnosis that I finally told my employer. They asked me what support they could offer
& what the diagnosis actually meant.
At that point I didn’t really know.
Aside from AI I didn’t even really know where to go for information. The fact that I was unable to properly
articulate the problems that I faced as a direct result of the Asperger’s
played a large part in the relationship I had with my employer breaking down. In hindsight I see that some of the problems
I faced might have been averted if my employers had a better understanding of
my disorder. But I also feel it’s partly
my fault that I couldn’t educate them sufficiently. I’ve since found other charities and websites
that have helped give me a better understanding of things. It also helps working for a charity that
helps folk like me & who suffer a lot more than me. Only 16% of people with Autism are in
employment. As much as I don’t associate
myself with the term Autism, I’m an Aspie, I do understand that that figure
does include me. So given I’ve at least
managed to stay in full time employment for most of my adult life, I’m one of
the lucky ones. Despite all the problems
I’ve had in employment.
In 2010 the
Tories were elected in the Westminster election. My employer at the time was a well known
Market Research company. It was a casual
contract so the shifts weren’t guaranteed.
There would be periods of time when you wouldn’t get any shifts at
all. Again, I was quite lucky, my work
grade meant that I was often more likely to get shifts than others. But not long after the election the shifts
really started to drop off to the stage that I was seriously concerned about my
ability to pay the mortgage. That’s
putting it lightly. I was
terrified. My usual routine had been
totally destroyed and I just couldn’t see any way out. This had an impact on how I engaged with
managers & staff there. This all
highlights 3 pretty major symptoms of the Asperger’s. Firstly, a need for structure &
routine. The fact that had been
destroyed caused me significant problems dealing with everything else. Secondly, an ability to deal with change,
which I know is a bit at odds with my lifelong fight for a socially just
independent Scotland. The ability to
deal with change is one that causes me distress & upset. However I’ve seen through my work just how
much more intense that can be for those on the more extreme end of the
spectrum. It can be felt for many as
acutely as a blow to the face or a cut finger.
Thirdly, we have, I have a tendency to over-react to things. When bad things happen I really struggle to
see the light & it can be quite a struggle to get through that. For example, the Tories winning in 2010, the
Brexit result or Donald Trump winning the Presidential election. All those things terrified me. The levels of nausea that I feel are quite
overwhelming at times. One of the senior
managers at that company told me that he wouldn’t promote me exactly because of
the symptoms I’ve just described. The
diagnosis didn’t come till after I’d moved on.
But I don’t believe for a second that he’d have treated me any
differently if he had known. He made
quite clear that I didn’t have the qualities required to be a supervisor in his
office. A similar thing happened at the
next employer where I was told that I “didn’t think like a manager.” And that employer knew about the
diagnosis.
But it’s not
that I don’t think like a manager. I
don’t think like the majority of the population. A term I’ve learnt from my work as a Support
Worker is “neurotypical” and “non-neurotypical”. If you are on the Asperger’s/Autism Spectrum
then you are non-neurotypical. In
layman’s terms it means my brain is wired a bit differently from the majority
of the population. This brings me onto
the final points I want to make. It is
one thing to know that you are a bit different from other folk. It’s another thing quite entirely to take in
that one has a disorder or disability.
It’s taken me the best part of 4 years to really start accepting it. I’ve supported the 1 in 5 campaign since the
start and followed it fairly closely.
But, although I accepted the Aspie tag, I never really accepted that I
was disabled. I work with people who
suffer from the symptoms much more severely than I do. I’m not physically disabled in the sense that
I need a wheelchair or crutches. Someone
may meet me & not realise that there’s anything wrong with me at all. But get to know me & I think it’s fairly obvious. Those that really know me are never surprised
when I tell them about the diagnosis.
They all say pretty much the same thing
“That explains a lot eh.” It
does. It really does. Learning and understanding this disorder is
key to dealing with the problems I face.
But employers need to be a bit more proactive too. The Scottish Government is doing some great
work and I’m greatly impressed by the Autism Strategy. But given my experiences I’m not entirely
convinced that employers will just cease to discriminate against those of us
with spectrum disorders. After all,
remember I apparently don’t think like a manager. So am I ever going to feel a sense of career
progression? I’m not convinced greater
awareness or understanding would have made the slightest difference to those
previous managers. Clear and enforceable
legislation is probably the only thing that would. Employers need to understand that there are
some real positives to the condition that would actually be of benefit to their
organisations. For example Aspies often
have a good attention to detail. We work
in a very structured way. When I can see
a pattern to the work I can latch onto that and often excel in the task. It is also recognised that those on the
spectrum are generally pretty loyal. So
if an employer or anyone else treats me with decency then I don’t forget
it.
I don’t want
to finish this piece on a pessimistic note.
I now accept that I’m an Aspie. I
accept that I’m disabled, albeit a wee bit.
I don’t want folk to treat me any differently after reading this. Well, I mean I don’t want my friends to. I love the community of which I am part. I’m very proud of what we’ve achieved
together as a party in this constituency and the part I’ve played in it. Some aspects of the disorder have led me to
experiences that might not have happened otherwise. Let’s face it there are far worse obsessions
to have than that of wanting to reduce inequalities and the achievement of
Scotland becoming an independent sovereign state.
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