As someone with both Chronic Fatigue Syndrome and Aspergers
Syndrome, I empathise with all my fellow disabled. However I'm finding the
group I empathise most with, next to my fellow aspies of course, are the deaf.
There are lots of reasons for this. They start with the
personal, such as my having known a deaf woman for many decades through a
family connection. I've also had a slight hearing loss since my 20s, and, like
many on the spectrum, I almost certainly fit the criteria for Auditory
Processing Disorder as well. People's words frequently come across as sort of
'mushed together', and I have to unscramble or 'decode' them. It's hardest when
speaking on the phone, and I've realised recently that face-to-face I do quite
a bit of lip-reading – and so know how difficult-to-impossible that can often
be, eg if someone has an accent, or a moustache over their lip, or turns their
head away or mumbles.
But beyond these personal reasons, I find many similarities
between the autistic and the deaf.
We've both have had our conditions 'medicalised', seen as
pathological. We've been told that the Best Thing that can happen for us is
some sort of 'cure', whether it be cochlear implants, learning to imitate
speech and lip-read, or punishing rounds of 'therapy'.
We've both been taught we are 'lesser than' or inferior.
Our natural states have been cast as 'lacking' or 'deficient' in some way, and
we’ve been treated as though we’re somehow less than other human beings. We've
been taught that to be hearing/NT is better, and that They Know Better Than Us,
about all sorts of things, most especially how we should live our lives.
We've both been seen as 'stupid'. We've been called
'retards' or 'dumb', held back in education or given a lesser education,
assumed to be non-intelligent if non-speaking, and often had it assumed, or
even specifically been told or taught, that we ‘can’t do’ a lot of things, and
so generally not given the same chances in life.
We've both been kept ignorant. Both groups have often
not been informed of a lot of basic stuff about the world. Neither group 'just
pick it up' - the deaf because they don't hear it, autistic because they don't
'see' it. If the deaf don't learn and communicate in sign language with their
parents as children, and the autistics are undiagnosed, then the likelihood of
this is increased. Both groups suffer lifelong consequences from this.
We’ve both have problems with communication. Sign
language was suppressed for many years, and even now, few people outside the
deaf community and their immediate families and teachers know sign language,
and interpreters are still thin on the ground. Non-verbal autistics are still
too often seen as ‘not having anything to communicate’ - even if they have
communication devices, they’re still sometimes not listened to. Even if an
autistic is verbal, they can also have difficulty communicating their needs to
others.
We've both experienced forced normalisation. There’s
been so much pressure on us to be or at least pretend to be ‘normal’, whether
it be the tyranny of oralism for the deaf, or 'indistinguishability from their
peers' for us. The over-riding message has been that ‘not normal’ is bad, that
we must not sign, or flap, or show any obvious sign of our ‘defectiveness’,
that we should aspire to be normal, or to imitate it as closely as we manage,
no matter what the personal cost to us.
We've both have been punished for doing what comes
naturally. This is of course sign language for the deaf, and stimming and
other autistic behaviours for us. This follows on from that forced
normalisation – all our natural behaviours and means of communication have been
suppressed “for our own good”.
We've both been victims of various kinds of maltreatment.
We've been beaten up, bullied, abused, yelled at, laughed at, scorned and
jeered at, rejected, ignored, etc, etc, ad nauseum. We've been excluded from
professions and jobs because other people tell us we aren't capable of them,
we've been discriminated against, jailed, put in mental institutions, or even
killed. The list is a long one, and it ain’t over yet.
We’re both invisible to others. We’ve both been
marginalized. As far as the rest of the world is concerned, deaf or autistic
viewpoints are so rarely seen or heard, it’s like we might as well not exist,
most of the time. And so our needs are rarely if ever taken into account when
facilities are designed or events staged. A recent example is the lack of
captioning for Rugby World Cup events on New Zealand TV. It’s like it never
occurred to the Powers That Be that the deaf might be interested in watching
rugby.
We’ve both had to find our own ways of doing things.
For both groups, a lot of the aids we need are visual. Charts, lists, maps,
social stories, teletext captioning, cellphone texting, AAC devices, computers,
the Internet/email, etc, are of vital importance to us, yet often we’ve had to
find, invent or insist on them ourselves. Others have been so insistent on
normalising us that they’ve ignored or denied us what we really need.
We've both overcome all the above, to form communities of
our own. We’ve rejected so much of all of this BS, to find each other,
support each other, and form our own communities, where we can communicate,
share, and socialise in our own ways, on our own terms. There is often a sense of
relief and belonging somewhere, for the first time, when we enter these
communities, plus a shedding of a lot of old worn-out ideas about who and what
we are.
Things thankfully have changed and shifted for the deaf in
recent decades, though I don’t doubt many of them would still say there’s a
long way to go. We autistics are still stuck in the past in this regard,
somewhat behind the deaf, a lot of the worst things are still happening for and
to us. It fills me with frustration, but I remain hopeful that we will find
ways to effect change. It’s certainly about time. Both groups deserve so much
better than this.
