Language and Disability

Peter Mittler of Dementia Alliance International
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From Holocaust to Austerity Britain

Peter Mittler has been working in the wider disability field for some 60 years: as a clinical psychologist, parent, academic, director of a large research centre on learning disability at Manchester University, policy adviser to government and UN consultant on disability.

Following his own diagnosis of Alzheimer’s ten years ago, his advocacy has focused on the rights of 46 million people with dementia.

Here, he looks at the important role in shaping attitudes to disability that is played by language.

The Social Context of Language

Before we set off, I want to stress the importance of thinking about language in a wider societal context.

The language used about disability and disabled people reflects some very powerful forces. These include:

• Deep-seated personal, professional and public attitudes and values about disabled people in general and specific groups in particular
• The power imbalance between disabled people and the rest of the population
• The gross and growing inequalities between the haves and the have-nots

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Inequality is growing in the UK

The UK is near the top of the international inequality league table for the size of the gap between the income of its richest and poorest citizens. That gap is growing, despite a greater awareness that inequalities adversely affect the whole of society.

The social model of disability highlights the obstacles that must be overcome to enable disabled people to participate in society on the same basis as others.

Some obstacles are easy to identify but difficult to overcome, as we see in the many inaccessible buildings, sport and recreational venues and public transport in many parts of the country, despite legislation which has been in place for decades but simply ignored.

I want to suggest that the biggest obstacle is the under-estimation of the capacity of disabled people by the general public and those who continue to make decisions about us without consulting us.

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One moment we are superheroes, next day we are work-shy benefit scroungers

Disability hate crime has been rising year on year, especially since Brexit unleashed hostility and violence against anyone perceived as an outsider.

The chair of the Equalities and Human Rights Commission – David Isaacs- has called on the government to take these attacks more seriously.

Where is Teresa May’s commitment on the steps of Downing Street to reduce the inequalities in our society?

The government now wants to prioritise people who are ‘Just About Managing’. Where does this leave disabled people who can’t work or can’t find work and who have had to resort to food banks? Or those who have died or committed suicide after losing their benefits?

These attitudes and abuses need to be confronted – but how?

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Time to claim our fundamental human rights

45 years after Alf Morris’s Chronic Sick and Disability Act, 21 years after the hard-fought 1995 Disability Discrimination Act, eight years of austerity cuts and more to come, what can we do to claim our basic human rights to citizenship?

My answer to this question is that we can make a start by claiming our fundamental human rights. And now is the moment to do it, because the UK government is being held to account by the United Nations Human Rights Bodies for its implementation of the UN Convention on the Rights of Persons with Disabilities.

This Convention is the first international treaty to have been drawn up by the people it is designed to benefit and insists on the full involvement of disabled people in the national government’s implementation and monitoring of the Convention.

Until recently, the UK disability NGOs showed little interest in the opportunities for advocacy presented by the Convention, compared to their European counterparts. That has changed dramatically in the last two years.

The UN High Commission on Human Rights upheld a formal complaint against the UK government by Disabled People Against the Cuts. After examining hundreds of pages of evidence, the Committee agreed that the drastic cuts in benefits and supports for disabled people and in the funding available for public services were depriving disabled people of their right to independent living and participation in the community.

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Language is a human rights issue

I want to suggest that we can think of the language around disability as a human rights issue. We can begin to do that in the context of the eight General Principles of the UN Convention.

1 Respect for dignity, autonomy, freedom to make choices independence
2 Non-discrimination by disability, gender, ethnicity, age
3 Full participation and inclusion in society
4 Respect for difference: acceptance of disability as part of human diversity
5 Equality of opportunity
6 Accessibility
7 Equality between men and women
8 Respect for the evolving capacities of children with disabilities and for the right to preserve their identities.

These words may sound like ‘pie in the sky’ or ‘pigs may fly’ but they come down to earth in the 34 Articles of the Convention.

It is very important for Disabled Persons Organisations to take a lead in providing guidelines on unacceptable language and offering alternatives. There are already several language guides for the media which are ignored.

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Dementia: bad care and bad language go together

Dementia self-advocates have only just started to claim their human rights but have already published strong statements on acceptable and unacceptable language.

Bad care and bad language go together, so here are just a few examples of unacceptable language:

• From the moment of diagnosis, we are always called ‘dementia patients’, even though we may never meet another health professional other than our GP. We are people, not patients.

• We object to constantly being referred to as ‘sufferers’. Although many people do have symptoms that cause suffering to themselves and to others, we suffer most from poor or non-existent services. We want services which would help us to meet our aim of Living Well with Dementia or even Beyond Dementia – but we don’t get them. We know from OECD research that “Dementia receives the worst care in the developed world”.

• We object to politicians and researchers using military language about dementia – we’re not demographic time-bombs or tsunamis.

• We don’t believe in a world without dementia because people are living longer, especially in Low and Middle Income Countries such as China and India.

• So we say “Stop Promoting a CURE TOMORROW but spend money on CARE TODAY.”

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Dementia has been abolished by the Japanese government

Eight years ago, the Japanese government abolished the word used for dementia because it was considered disrespectful and degrading, as it is in English and in most European languages because it means ‘without mind’. When we say that someone is demented, we imply that they are out of control.

The new terminology is the equivalent of cognitive impairments, which is widely used in American newspapers and magazines in place of dementia.

Language, and attitudes, are constantly evolving

Until 1948, we had colonies for mental defectives, who were classified as idiots, imbeciles, feeble-minded and moral defectives.

In 1948, the then new National Health Service took over these colonies, renamed them as hospitals and appointed medical directors and nurses, some of them with specialist training, as well as occupational therapists, clinical psychologists and social workers.

I started my training as a clinical psychologist in 1954 in a small progressive psychiatric hospital in Oxford and had placements in several hospitals and community services.

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Inhuman conditions exposed to the glare of publicity

My long journey to human rights began when I was shocked by the inhuman conditions under which people lived in some of the long-stay hospitals that had been workhouses in the 19th century.

During the 1960s and 1970s there were many newspaper articles and books which drew attention to these conditions. There was talk of snake pits, dumping grounds, warehousing, neglect and stigma.

A particularly influential book was Christmas in Purgatory, a photographic essay by Burton Blatt about Willowbrook, an institution near New York. Its UK equivalent was a Guardian article by Ann Shearer headed: ‘A Mental Hospital on a Bad Day’.

The original title of Maureen Oswin’s account of hospital conditions for children with Profound and Multiple Disabilities was “Vegetables Don’t Cry”, because that was the word used to describe them to visitors.

That book led to a national campaign to stop the admission of children to long-stay hospitals, which reduced the number of children there from 6000 to a few hundred, as parents refused to follow advice by doctors to “put your child in a home and have another one”.

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Petty crime and low educational achievements led to hospitalisation

I soon realised that many adults had been sent to these hospitals long ago because of a combination of petty crimes or promiscuity with low educational achievements. Doctors still had to provide evidence of low intellectual ability to a central Board of Control who sent official visitors to the hospitals and usually reported that “the patients were well and happy”.

At that time, certification of mental deficiency was based on questions which involved knowing the distance from London to Edinburgh and the difference between a herring, a kipper, and a bloater.

This was also the period when the Royal Commission on the Law Relating to Mental Illness and Mental Deficiency was taking evidence.

That Commission laid the foundation for the 1959 Mental Health Act and to the relocation of tens of thousands of people to community services.

But it also changed the terminology. I clearly remember the then Minister of Health proudly announcing to a large conference that “the mentally deficient of today will be the mentally subnormal of tomorrow”. No one laughed, but no one clapped either. It would be very different today.

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Subnormal… subhuman?

Let’s stop the terminology train for a moment to reflect on the word subnormal. What word do we associate with subnormal?
For me, only ten years after the Holocaust it was sub-human, the word used in Nazi Germany to justify the gassing of 6 million Jews, including members of my family.

The gas chambers used in the Holocaust were first tested before the war on tens of thousands of disabled people who were deemed to be subhuman and unfit to live and were systematically murdered by the doctors entrusted with their care (Burleigh, 1997).

Their relatives were told that they died of pneumonia and had to pay for a box of ashes.

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Official banishment, but many disparaging words are still in current usage

Although idiot, imbecile and moron have long been officially abolished, they are still in use in everyday language as terms of abuse. But it’s one thing to say ‘you idiot’ to a friend, quite another when it’s used by a politician to describe an opponent.

During the campaign for the Labour leadership, Owen Smith called Jeremy Corbyn a lunatic, followed by Tony Blair a while ago, who called him a nutter. This has resulted in a formal complaint against the Labour Party by the Mental Health Resistance Network and Disabled People Against the Cuts.

But “Mong” and “Spaz” can still be heard in playgrounds or shouted at children in public – perhaps because they’re naughty words.

Until 1971, children with an IQ test under 50 – administered by a school medical officer – were deemed to be ineducable and sent either to hospitals or increasingly to Junior Training Centres.

Stanley Segal, head teacher of a school for children with physical disabilities, led a brilliant No Child is Ineducable campaign – based not only on his book under that name but on his forceful advocacy at every level.

I tried to persuade a MENCAP conference but some parents were doubtful: “Will teachers understand our children?”

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Terminology has been constantly evolving

Into the late 60s, subnormality continued to be used for legal purposes but was gradually replaced by mental handicap.

Learning disabilities later replaced mental handicap, even though in all other English-speaking countries learning disabilities refers to specific difficulties in learning to read or spell.

It seems we did a Brexit on terminology because the UN and the rest of the English-speaking world have been using intellectual disability for more than 30 years.

It would take too long to describe the vast array of labels that followed the replacement of ‘handicapped children’ by ‘children with special educational needs’ in the 1978 Warnock report and the 1981 Act. But I can strongly recommend Jenny Corbett’s ‘Bad-Mouthing: The Language of Special Needs’ – a book that made me re-think my assumptions, attitudes and above all values, and commit to human rights and social justice.

During the 1970s, ‘people first language’ began to be used because it was considered to be respectful, not just because it was politically correct.

The Mentally Handicapped became Mentally Handicapped People because they are people first and mentally handicapped second. Down’s Children became Children with Down’s Syndrome.

Generalisations about disabled people should not be based on diagnosis because no two people with the same diagnosis are the same.

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Neurodiversity, a powerful concept

The Asperger’s community strongly rejects a disability identity. Instead, autism is seen as an expression of neurodiversity and they refer to the rest of us as “neurotypicals”. I don’t think this is labelling, but rather, a witty revenge on labellers.

The late Gunnar Dybwad, a former President of Inclusion International, put it more simply “It’s normal to be different”.

One of the General Principles of the UN Convention is about respect for difference and acceptance of disability as part of human diversity.

People with dementia are attracted by the concept of neurodiversity because the longer you live, the more likely you are to experience problems in remembering, new learning and problem-solving which may lead to dementia.

So dementia too is on a spectrum from people who are just worried about their memory to those who can no longer recognise their relatives – that’s the image of dementia held by many members of the public and promoted by the press and the pharmaceutical companies.

Some of us have been accused in public of being imposters, because no one with dementia could possibly give a public lecture. Under-estimation is the daily experience of people with dementia and one of the reasons why we are claiming our rights on the same basis as other disabled people.

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So, what do disabled people say about how language should and should not be used?

Self-advocates never liked mental handicap because of the stigma around ‘mental’. When MENCAP refused to change its name because it would lose them donations, many self-advocates broke away from MENCAP and started People First Associations.

The Spastics Society changed its name to SCOPE, and its constitution to enable half its Board Members to be people with cerebral palsy, as did several others.

A vibrant self-advocacy movement started in Adult Training Centres which became Social Education Centres in the late 70s. It achieved a great success when the National Union of Students accepted them as full members.

Gary Bourlet who led this movement is now a member of the Disability Rights UK committee which has recently briefed the UN Disability Committee the various ways that the UK government has been breaching the human rights convention.

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Organisations “for” rather than “of” disabled people struggled with terminology

Canadian self-advocates succeeded in changing Canadian Association for Mental Retardation to Canadian Association for Community Living but it was a struggle.

I was at one of the meetings where this was discussed and parents were asking ‘How will people know who we are? Will we lose our funding?’. Since then, CACL has gone from strength and provided world leadership on inclusive education.

The principle behind a change of name is that voluntary organisation should not be identified by an illness or diagnosis but by its mission.

The International League of Societies for Persons with Mental Handicap with whom I worked as a volunteer for 20 years finally became Inclusion International and now has self-advocates as Vice-Presidents and Council Members.

One of them, Robert Martin from New Zealand not only helped to write the Disability Convention but has just been elected to be a member of the UN Disability Committee.

All its 18 members are disabled and will soon be asking our government a lot of questions about their implementation of every Principle and Article of the Convention.

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Disabled People or People with Disabilities?

In this article, I’ve consistently used “disabled people” out of respect for the founders of the UK disability movement, many of whom I have known. I’d like to single out Vic Finkelstein with whom I worked in the 1970s in developing the first Open University course, then called ‘The Handicapped Person in the Community’.

This takes us back to the early days of the disability movement. Its founding fathers – because they were all male for quite a long time – and many of their followers rejected people first language and insisted on ‘disabled people’ rather than ‘people with disabilities’ because they were disabled by society more than by their impairments.

The original social model of disability focused on physical and institutional obstacles to participation in society but also included parents who over-protected their children, young and not so young.

The social model was contrasted with the medical or defect model which, in my view, has been over-simplified as a ‘fix it’ model which focused solely on the impairment and neglected everything else.

Later versions of the social model recognised and valued the support that could be provided by rehabilitation professionals such as occupational therapists, physiotherapists, speech and language therapists – all of whom are as essential to people with dementia as they are to people whose brains have been damaged by a severe stroke, a road traffic accident or a bullet through the brain.

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Broader interpretation also embraces invisible disabilities

The UN Convention doesn’t mention the social model but reflects this broader interpretation because it is concerned with a wide range of invisible disabilities.

Notably, this brings in mental health disabilities – called psychosocial disabilities in UN terminology- as well as a wide range of neurological conditions which now include dementia and autism as well as spina bifida, epilepsy and motor neurone disease, though not all these groups have claimed access to the Convention.

Disability Pride

Disability Pride is in the great tradition of Liberation Movements in the 60s: the Women’s Liberation Movement; Black Pride, Gay Pride; even Silver Panthers- all driven by protest against discrimination, oppression, denial of citizenship and of the fundamental rights which were first proclaimed by the United Nations in the Universal Declaration of Human Rights.

Disability Pride takes many forms. One response to degrading language is to use even worse language to challenge it but at the same time to ask a fundamental question debated not just by disabled people but philosophers, psychologists, even economists.

In that spirit, Francesca Martinez asked: What the **** is Normal?

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Further resources

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The UN Enable website is here

Peter Mittler is human rights adviser to Dementia Alliance International

You can read his article about dementia and human rights, here on Independent Living

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2 Responses to “Language and Disability”

  1. Laura B April 4, 2017 at 5:07 pm #

    Fantastic article, Peter, thank you.
    Have you noticed that the word ‘handicapped’ is used to describe people with disabilities, accessible rooms, transport for those with disabilities etc. in Europe. Well, truthfully, maybe not the whole of Europe but certainly places I have frequented recently ie. Berlin and Gran Canaria. I was shocked and quickly corrected the poor person behind a reception desk……….
    Laura B

  2. Laura Graham April 6, 2017 at 10:04 pm #

    I really enjoyed this article, and in particular, the history provided regarding an evolving language around disability. I struggle with the current use of the term “bed-blockers” within discussions about the social care crisis. Bed-blocker infers that the people stuck in the situation are responsible for the circumstances they are likely frustrated by. It must be awful to be referred to as a bed-blocker when you are in this situation, having to deal with the situation and feeling a that you are an inconvenience to boot. Surely bed-stranded is a better description?

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