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.

The People of the Eye

Lately I’ve been reading a very interesting book called ‘People Of The Eye’[1], a collection of life-stories by New Zealand deaf people.

Due to a family connection, I’ve known a deaf woman since I was in my teens and she was a child. Communication with her and her younger sister (also deaf, who tragically died in her twenties), though limited to interpretation through their mother, gestures, lip-reading and the few signs I know, soon showed me that ‘deaf’ did not mean ‘dumb’. They were lively, intelligent girls, with a great sense of humour. On one occasion, for instance, the younger girl asked me through her mother what I’d had for dinner. I couldn’t remember the sign for chicken, so instead bent my arms and flapped them like chicken ‘wings’. They almost rolled around the floor laughing! I also knew, through overhearing conversations between our mothers over the years, some of the deaf ‘issues’ of the day.

However it wasn’t till reading this book that I began to understand the depth of the problems deaf people in NZ (and elsewhere) have faced over the past century, and continue to face.

Briefly, the story is this. In 1880, the International Congress on Education of the Deaf passed a resolution to stop using signs to teach Deaf students. Being deaf was considered a ‘deficient’ or pathological state, and it was decided it was best for deaf children to learn to lip-read and talk, ie make them as ‘normal’ as possible. Speech, they declared, was vastly ‘superior’ to signs, and therefore the latter must be eliminated.

As the first School for the Deaf in NZ didn’t open till that same year, this approach, known as ‘oralism’, was used from the start. Older generations of NZ deaf were punished for using signs, and made to feel ashamed of it. Nonetheless, those children who did know some signs taught each other when teachers weren’t looking. As you might expect, the most profoundly deaf never learnt to speak well (my family friend included) as they simply can’t hear what they are supposed to be reproducing. Eventually as adults they began to form their own Deaf communities, where signing was the main method of communication, as this was the one most natural to them.

The deaf being considered to be ‘incapable’ of any work other than the most menial, vocational education was the focus in their schools, and this, together with the huge amount of time spent on oral speech training, meant the standard of education suffered. Many older Deaf people have been limited in their academic abilities and achievements as a result of this, and it’s only in recent decades that some younger Deaf people have made it to university. (I speak here of the NZ situation of course, this book makes it plain that this doesn’t apply in other countries, especially the US, and many NZ Deaf in this book express amazement and envy of the support American Deaf enjoy, and their educational achievements.) From the 1960s on, many deaf children began to be mainstreamed in regular schools, which was done with good intentions, but as few teachers had any idea how to support their deaf students (eg by simply remembering to talk facing them), and they had no interpreters, their educational achievements remained, not surprisingly, generally low.

It wasn’t till 1979 that a form of signing was allowed in deaf schools – and even then, it was not NZSL, but a method known as ‘Signed English’ or ‘Total Communication’, which corresponds ‘word’ for ‘word’ with spoken English. This method however is not natural to the Deaf, true sign language being vastly different to spoken English. NZSL interpreters didn’t begin to be trained till 1985, and the number of them is probably still small. NZSL was finally allowed in Deaf classrooms in 1993, the first Deaf teacher of the Deaf qualifying in 1992. Things are slowly changing, but many Deaf people still feel far more comfortable with other Deaf, simply because communication is so much easier. They have their own clubs, social events, sports, and even Deaf Games; in short their own culture and community, and most definitely do not regard themselves as ‘disabled’ or ‘handicapped’. The Deaf people in this book express pride in their way of being, see nothing ‘wrong’ with being Deaf, and were not bothered at all when some of their children turned out to be Deaf. They are proud, self-reliant, and amazingly strong, worthy of admiration and respect.

The ‘pathologising’ of one’s condition, one’s difference seen as ‘inferiority’, attempts at a forced ‘normalisation’ or at least outward elimination of this ‘inferiority’, restriction of hand movements, being educated in a way that is inharmonious or injurious, being treated as though one is ‘stupid’, insistence on communication by methods foreign and unnatural to one’s being, and which moreover in most cases can never be fully learnt, the slow forming of communities ‘away from normal eyes’, the equally slow formation of culture and pride in one’s own natural way of being….

Does any of this sound familiar to you spectrumites?!!?

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[1] Rachel McKee, People of the Eye – Stories from the Deaf World, 2001, Bridget Williams Books, Wellington, NZ.