Tuesday, 1 December 2015

Why I Empathise With The Deaf

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.