by Kate Caryer
The Social Model is one of the two most important and best things in my lifetime, the other one being LLL, my Minspeak programme on my communication aid.
I was dramatically born in 1983. Also in that year, two major things happened. Firstly, in the month of my birth, November, Minspeak became commercially available at an American Speech–Language–Hearing Association (ASHA) conference. Secondly, disabled activist-turned-academic-turned demigod, Mike Oliver coined the term SOCIAL MODEL and MEDICAL MODEL of disability to promote the mind-blowingly original but powerful philosophy of the Union of Physically Impaired Against Segregation (UPIAS) which I will get back to presently. The Social Model and Minspeak have both significantly shaped my life. It is amazing the two of them both came into being the same year as I did! I would like to take this blog to explain how important these two things are to me and the wider disabled non-speaking population.
First, a bit of my background. I am very nearly 40 and I have athetoid cerebral palsy with no speech at all. So, although my hand function is relatively quite good compared to many people I know who use A.A.C. and have CP, I simply have no idea how it feels to form a word with my mouth and absolutely no understanding of where to start to say any old word. What I am trying to say is people with zero ability to talk are shut from the world of speech and any A.A.C., be it a state of the art communication aid like those Liberator sell, or the simplest alphabet letter board, will become our only mean of communication apart from behaving like cavemen with the simplest language of grunts.
Having said all of that I must say I detest the phase ‘ non-verbal’ to mean someone like me!
Non-verbal is often used to describe people who can’t speak these days. But here is the worrying thing; it is usually used to describe what I am and people like me are not and never want to be, that is, having no language at all and the only way we can communicate is through facial expressions and the loving guess work of people around us. Saying non-verbal does not help anyone! We have plenty of words in our heads and know how to use language. We just can’t use our mouths to communicate them. We are non-speaking, but certainly not non-verbal.
On reflection, this idea is similar to the UPIAS idea from 1974. Okay, I will take stuff back a bit in case you are wondering what/who is/was UPIAS rather than a weird collection of letters ordered in a really odd way. UPIAS stood for the Union of the Physically Impaired Against Segregation and these people are widely considered to be the God daddy of this country’s disability movement. It was started by this guy, Paul Hunt, in 1972 writing to the Guardian newspaper a call to arms to disabled people to fight against the extremely prejudice of the time.
In the early 70s, many people like Paul lived in awful care homes with no say in their own lives; and you thought flared trousers was the most awful thing about the 70s! But by the time he wrote the famous letter Paul himself had escaped and was living in London with his wife. Due to the response to the letter, Paul teamed up with other disabled people like the wonderfully-named, and wonderful in general, Victor Finkelstein to set up U P I A S. U P I A S was unusual for its time because it was an organisation to do with disability issues run by disabled people, and not well meaning non-disabled people which was the norm back then. In 1976, U P I A S especially Vic set out the way they saw disability which was vividly different to the views of all those non disabled charity and care home institutions.
They created new definitions of impairment and disability. They defined impairment as “lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body” and disability as “the disadvantage or restriction of activity caused by contemporary organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities”.
In the context of AAC, not being able to speak is an impairment. Not being provided with the means to speak is a disability.
In 1983, Mike Oliver, in a book for social workers of all people, coined the words SOCIAL MODEL for the idea that society rather our impairments disable us whereas the term MEDICAL MODEL of disability meant the classic way of looking at disability where the impairment is the a bad thing and finding a cure should be strived for or, if this is not possible (SPOILER ALERT: in 99.999999% of cases it isn’t possible) striving to be as non disabled, in other word normal, as possible is expected of disabled people. To me this means sacrificing your life to the almighty Gods of therapy and treatment to get you functioning as a non-disabled person and being able to walk seems to be the holy grail in this. Okay, okay I know I know I am being over the top but you get my point. The Social Model changes the focus of the problem to society, away from our bodies being different and wrong. I and many, many, many disabled people throughout the last forty years have found the Social Model of Disability an empowering way to look at disability and ourselves. WE AREN’T THE PROBLEM, SOCIETY IS.
The Social Model is one of the two most important and best things in my lifetime, the other one being LLL, my Minspeak programme on my communication aid. For me it works fantastically, I can have a large vocabulary at my fingertips. So thank you, thank you, Liberator for being with me for over thirty years and making me who I am today, someone who never shuts up!!!!!
Unspoken are currently crowdfunding for their latest project ‘You Have Been Muted’ which you can find more details about here.