I outed Social Role Valorisation last week. I suggested that Social Role Valorisation and Normalisation had no place in any program or policy based on human rights. I suggested the NDIS was about choice and control and making a program about having choices that only the mainstream will value and accept is not person centred. I suggested that decision making based on having people with a disability conform with the norm and have a valued role that others will admire has no place in a program based on human rights.
For my efforts last week I was patronised by some people. They claimed that I didn’t know what Social Role Valorisation was. I didn’t understand its value and influence on policy direction and program development. Horrifyingly there are actually people that think Social Role Valorisation and Normalisation still has a place in today’s world. I shudder that there are still people in high up areas that think it does.
The history of Social Role Valorisation lies in Normalisation. The concept of Normalisation supposedly has its roots in the 60s and 70s in Scandinavia. Let me offer you some quotes from academic papers that explain what normalisation is. Initially normalisation “…was first applied only to mentally retarded people. Its 1969 formulation by the Swede Bengt Nirje called for “making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society.”
Clearly the scope of normalisation was to make “The Retarded” (Yes I know) as much like people in mainstream society as possible. Now the noble premise of Normalisation was that people who had disabilities and were supported and educated in institutions did not lead happy lives. The noble aim was that people with a disability should be part of mainstream society because institutions were, “..congregating together large numbers of people with all sorts of maladaptive behaviors; located in bleak settings far from their families or any population clusters, with barren buildings and virtually no meaningful or productive occupation for their residents. The people who lived in them ended up virtually cut off from ordinary society, and often died there in obscurity.”
I won’t dispute that. That still happens today. But not just in institutions but in society generally. That’s why we have a Royal Commission intro Neglect and Abuse of People with a Disability. Sadly it happens everywhere. As you can see from todays headlines that are alleging deaths because of NDIS ineptitude, bureaucratic negligence also leads to death of people with a disability.
But back to Normalisation. Apparently academic Wolf Wolfensberger got a whiff of what was happening in Scandinavia. He decided to go see for himself. The idea of Normalisation appealed to him. He took the Scandinavian model and applied it to any group of people he deemed as “deviant” or “devalued”. Yes, these are the words he used. His framework for policy and program development promoted the, “Utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible.”
Now you can package this anyway you want but clearly old Wolfy felt that the key to assisting “deviants” and the “devalued” was to make them, in his words, as ” .. culturally normative as possible.” Integrate or assimilate are other words that come to mind. Make them normal, like the norm, like the mainstream. Take your pick.
Wolfsenberger’s introduction to Normalisation led to him developing his theory of Social Role Valorisation. (SRV) His theory of SRV applied to any group of people that might be seen as “deviant” or “devalued”. In Australia that could be disability, Aboriginal and Torres Strait Islanders, the unemployed, refugees, people with mental health issues – Take your pick. Say this with me, and say it loud – “Deviants” and “Devalued” need to be as “Culturally normative as possible.”
Ok, now there are people that say SRV is not Normalisation. Rather it expanded and developed Normalisation to apply to a wider group of “deviants” and “devalued” So SRV is, ” …the notion that the good things any society has to offer are more easily accessible to people who have valued social roles. Conversely, people who have devalued social roles, or very few or marginally valued ones, have a much harder time obtaining the good things of life available to those with valued social status. Therefore valued social roles and the positive status that typically attends them are a key to obtaining the benefits inherent in any given culture.”
I could be wrong but this reads suspiciously like Normalisation dressed up to sound a bit more clever. Yes, I know the reader has already gathered what I think of Normalisation and SRV. I think it’s horrible. It’s patronising and it’s condescending. Worse, I think it promotes an ideal that there are elements of society and people that are better than other elements simply because they’re “normative”
People will have you believe that Normalisation and SRV are fairly recent ideas. I am here to tell you that they are not. I am going to tell you a story of the neglect and abuse of people who are deaf that has its origins back in the 19th century. You will see at the end of this story, hopefully, that Normalisation and SRV should be confined to the scrapheap. More importantly, I hope you will see that they have no place in guiding policy of the NDIS.
Did you know that Alexander Graham Bell was one of the first practitioners of Normalisation? Did you know that he actually invented the telephone while trying to invent a machine so that his deaf wife could talk properly? He actually invented a machine that could turn a dogs bark into words. He also wanted no deaf people in the world and wanted laws that would prevent deaf people ever marrying. Deafness was “deviant” you see. Breeding little deaf babies …. Please no! “…Bell feared “contamination” of the human race by the propagation of deaf people even though most deaf people statistically are born to hearing.”
Deafness, you see, is abnormal. It is not a cultural norm. Not to be encouraged. Said the grand old Bell, “Those who believe as I do, that the production of a defective race of human beings would be a great calamity to the world, will examine carefully the causes that will lead to the intermarriage of the deaf with the object of applying a remedy.”
Now if by some chance deaf people should come into the world, a tragedy that it may be, they had to be Normalised. They must not use sign language. For that would stop them speaking. They needed to speak. Because that was what most of us do and is culturally normative. SPEAK and you shally succeed. Indeed this is what he said of sign language … “ … essentially a foreign language” in an English speaking country like the United States, the English language, and the English language alone, should be used as the means of communication and instruction at least in schools supported at public expense.” Now go back and read the definitions of SRV and Normalisation – Does it ring any bells? ( No pun intended)
This was the mid to late 1800’s. At this time, from what I understand, sign language was prevalent. It was used in education. There were deaf schools. Deaf people did all sorts of jobs. They were lawyers, teachers doctors and the like. They were just part of the landscape. Bell and his advocates for Normalising deaf people destroyed that. The famous 1880 Milan conference on Deaf education decided to ban sign language and use only oral methods. Normalisation was the policy directive and advocates of sign language at the conference were ignored. Our friend Bell was prominent at this conference. In fact – ” ..Bell spoke for three days while advocates of American Sign Language were only given three hours to argue against oralism.”
What this began was a horrific set of programs that attempted to make people who are deaf as much like hearing people as possible. It was speech at all costs. Speech was valued. English was valued. Those Deaf that spoke well, wrote well – just like hearing people – were more likely to get access to all the good things that hearing people do – ( Yes I did just paraphrase SRV principles.) But what really happened?
Language deprivation happened, that’s what. And by the thousand, nae the millions, deaf education systems the world over churned out deaf kids that were language deprived. Advocates of oralism would wheel out their success stories. What they would not tell you is that these “success stories” likely had a fair bit of hearing that assisted them to learn to speak. The ones who oralism failed, they were left hidden away. This meant for nearly a hundred years many deaf kids were deprived of language and opportunities.
Yet even though the evidence mounted that oralism was failing many, they persisted. They punished children that signed. They caned them. They made them sit on their hands. And what they achieved was a generation of language deprived and largely illiterate deaf people.
Deaf people the world over protested. They let people know how isolated they were. They let people know that this dominant hearing people ideal was messing up deaf people. The evidence was there for all to see . Low attainment. Poor literacy. High incidence of mental health issues. But the dominant hearing group needed to fix these “deviants”. Instead they ruined a large proportion of them.
In Britain they had this to say in the 1970’s – “…They also felt the oral approach led to the assumption that deaf pupils would integrate easily with the dominant hearing population on leaving school which was misleading and a source of concern for many parents. They were also disappointed at how little attention had been paid to the evidence of deaf people themselves and their feelings about the ‘severe limitations of their oral upbringing’. (British Deaf and Dumb Association (1970) Report by a Working Party of the British Deaf and Dumb Association formed to study and comment on ‘The Lewis Report’; The Education of Deaf Children: the Possible Place of Finger Spelling and Signing. ”
The deviants, the deaf people, needed to be assimilated with the dominant. Only in this way could they be properly valued. See the theme. It’s almost Normalisation and SRV to a tee. Its been around since forever. It has caused great damage since, well forever.
Look, I get that institutions were and can be a bad thing. I get that in the past there was an out of mind out of sight approach. I get that institutions were bad, poorly run and centres of abuse. But I also know that mainstreaming, that wonderful tool to implement SRV and normalisation, failed many. Far too many.
Why? because the support was not adequate. Why? because for many just being there in a school like everyone else was the ideal. It didn’t matter if Johnny and Jenny sat on their own in the playground. It didn’t matter If Johnny and Jenny sat in a classroom and generally understood nothing.
It didn’t matter that if in adulthood adult 24 year old Jill went for walks with a senior citizens group, was given lollies and no-one ever spoke to her. Goodness Jill was with the mainstream, isn’t that a valuable thing? It didn’t matter if evidence showed that educational attainment in mainstream settings was low. This was ignored because being in the mainstream – was valued by society. Just being there meant they were more valued by society.
Crap. Just like with those old time institutions they were largely out of mind and out of sight. Support was inadequate and arguably worse than in specialist settings. Social interaction for many did not exist and the damage the isolation in this “Normal” setting caused has never really been measured.
And you know what? The Deaf people, so badly treated in the name of Normalisation and SRV based policy, later discovered the Deaf community. Some of them began to learn to sign. They made friends who were Deaf. But for many the language deprivation that they experienced at the hands of oralism was permanent. While the ability to sign improved their interaction they still had the literacy of a grade three child. They still couldn’t fill in forms. They still couldn’t compete for work with others. If they did work it was generally manual labour. Not all of them but thousands upon thousands.
And the cheek of the hearing populace was to use these people who were introduced to signing much later in their life as an example of why using sign language with deaf kids was bad. Yup, that’s what they did.
So to all you people reading this who think I don’t get SRV and Normalisation, let me tell you that I do. I get it in a way you will never fully understand. And get this. It’s not new. It’s been around since forever. All Wofsenberger did was make it seem clever. It isn’t. It’s just a pompous idea that tries to fit everyone into one basket. It needs to be confined to the annals of history.
All that I ask is that society just start to value people for who they are. Value their choices and support them accordingly. Sure, if the choices are damaging to others there is a limit. But let’s create a system of support that values people for who they are and not promote an idea that they will be more valued if they conform with the majority values of others.
Deviants and devalued – That says it all. It has no place directing NDIS policy.