Valuing Diversity: The Disability Agenda - We've Only Just Begun

Dr. Jane Campbell, Chair of the Social Care Institute for Excellence in England, presented this paper at the Bristol University Centenary Celebration on 9th November 2001, as part of their series of lectures on Valuing Diversity. She concludes, amongst other things that, "Well firstly we have to acknowledge that independent living is a human rights issue. Secondly, society has to learn not to retreat from the nettle even though it causes pain. The voice of the so-called radicals that dare to tell it how it is must not be dismissed." Internet publication URL: www.independentliving.org/docs6/campbell20011109.html

 

This paper was presented at the Bristol University Centenary Celebration on 9th November 2001, as part of their series of lectures on ‘Valuing Diversity’.

When Bristol University asked me to give a lecture on Diversity and Disability, I immediately thought of Adolf Ratzka, a seasoned disabled activist from Germany. He had the UK’s disability movement splitting our sides with laughter and wonder when he presented his ‘Crip Utopia’ at one of our gatherings two years ago.

”Human diversity will be embraced when I read in the English Times of an elegant black woman who whizzed out of No. 10 Downing Street in a flashy power wheelchair”.

“A Prime Minister who would, lead the ‘United Minorities Party’, whose major political thrust was to protect the human and civil rights of all their minority constituencies through detailed and tough laws.’ Laws, which prescribed Universal Design as the guiding principle in all activities and interrelationships between individuals and entities, private or public".

Adolf dreamt of a Europe, where the United Minorities Party abolished physical Apartheid and the universal wheelchair sign was forbidden. Why? Because as Adolf rightly pointed out - it singles out:

“and stigmatises a particular group of citizens. By using this symbol of access you do yourself a disservice, because the symbol serves as an alibi for the accepted norm of inaccessibility, emphasising the exception rather than the rule.” (1)

Adolf’s Utopia is appealing, amusing and many would say unrealistic. So wake up Jane, we’re in England, post millennium, where the accepted norm is largely still in the hands of those who do not experience the world as a disabled person.

And basically that is the nub of it - The gulf between Adolf’s Minorities party and our social, political and economic status in society, has yet to be bridged. But good news! Bridges are finally being built….just watch out for the ‘bridge too far’.

Some of the messages in this lecture today may seem obvious, but they continue to be uncomfortable for the majority. The messages demand a radical change in the way we include difference in our lives. How do we surrender power and control to those unfamiliar to us or to those we may even fear? How do we encourage this diversity to thrive and create?

If society is to value all disabled people, it needs to find ways of making our collective minority powerful enough to influence the future. Shaping our future is something the Disabled People’s Movement has been preoccupied with for decades. It is important for us to briefly revisit our history as a civil rights movement. For as Professor Oliver and I said in our book ‘Disability Politics’, “in order to be valued for who we are and what we want, we need to understand our history”. (2)

In researching our book, we felt the real watershed came in the mid 1970’s when disabled people started to organise away from charities and statutory bodies who spoke on our behalf.

Breaking away from these self-appointed guardians, we made a space where we could beg the questions: Why are we excluded from society? How can we break in? The key was to unlock some of the fundamental principles of the Social Model of Disability that we hold so precious now. The Social Model had and has the potential to transform our lives and yours. It has become the disability movement’s tool for social inclusion.

The Social Model. This must be one of the most misunderstood concepts, yet it constantly trips off the tongues of those who understand it least. Many find it difficult to believe in its transforming power because it argues that our problems derive from external circumstances and not our individual medical conditions. It demands an approach that wrecks the foundations of society’s main solutions to our so-called ‘problems’, rehabilitation, cure, institutionalisation and death. If that sounds too heavy, just think about the recent press coverage of Diane Pretty’s application for lawful euthanasia.

As I said, the Social Model was developed in the early 70s by a radical group of disabled thinkers. Our heroes, our leaders. Yes, we too have our gurus. Let me remind you of the fundamental principles of this philosophy. Although developed nearly 30 years ago, they have guided our struggle for rights ever since.

Disability is a situation, caused by social conditions, which requires for its elimination the following:

  • That no one aspect such as incomes, mobility or institutions is treated in isolation.
  • That disabled people should, with the advice and help of others, assume control over their own lives.
  • That professionals, experts and others who seek to help must be committed to promoting such control by disabled people.

These principles locate the problem of disability with society - something we can change and improve. How liberated I felt when I realised I was not the problem and no longer had to apologise for my existence!

Over the past 30 years, disabled people have used the ‘Social Model Principles’ in our campaigns for comprehensive civil rights, anti-discrimination legislation and independent living. Institutionalised discrimination against disabled people was finally, grudgingly, accepted after we gave overwhelming evidence in 1991 – published in our fine book – ‘Disabled People in Britain and Discrimination’.

The social model gave disabled people the confidence to campaign for rights in a way that was un-compromisingly based on social oppression. Not one off instances of prejudice as in the cases approach that had gone before. I have no doubt that this has greatly influenced the vision and values of the Disability Rights Commission. The DRC was established by this Government to tackle discrimination. A core value in the DRC’s strategic plan says,

“The DRC will be guided by the social model of disability. Our philosophy and approach are underpinned by the social model of disability. We believe the barriers that exclude disabled people from full participation in society are the result of the way the social and built environments are constructed, and society’s attitudes towards disabled people, rather then just being the result of individual impairments. A key part of our work will be to address, in a strategic way, those social structures and attitudes that have a disabling effect. The social model of disability is the most suitable model to adopt in our work.” (3)

This is quite a statement from a body born, not of the Movement, but the establishment. It is an indication of our power to influence. It is also a demonstration by those with power, to recognise the experts. Such alliances are not without their problems, but as I said: we’ve only just begun. The Disability Rights Commission has much to learn from those who have been developing and using the social model as a tool for change for many, many years.

The work began this year with the Commission visiting organisations of disabled people around the country to see how they wanted to be included in a common agenda of furthering and protecting disabled people civil rights. The terms of engagement are very important if we think back to the fundamental principles: That professionals, experts and others who seek to help must be committed to promoting such control by disabled people.

But will all be well with the world if the Disability Discrimination Act is perfected?

Well, not until we grasp the nettle that still denies that all life is of equal value. The DRC’s vision is of “A society where all disabled people can participate fully as equal citizens”.

And this is where the squirming starts. Despite the DRC’s vision and a growing international awareness of disability as a human rights issue the notion of elimination of our specific diversity is supported.

In the words of Mike Oliver:

“We know the Nazis killed 200,000 disabled people in Germany but we still practise death making in the here and now and still hidden from view. We avert our eyes just like the Germans did all those years ago. There are no gas chambers but there are things going on that we talk about in hushed tones using terms like ‘euthanasia’, ‘mercy killing’ and ‘termination’”. (4)

Having a right to access the built environment, employment and education are easy for society to confront in comparison to disabled people’s right to life. It is a sad fact that the majority of general public, think disabled lives are flawed or simply not worth living. In a recent Daily Mail poll 68% said they would want to abort if they found they were carrying a disabled child.

If we are to really value the lives of disabled people, we all have to confront our personal ghosts. This can only be done by listening to and involving those who experience that which the majority of society wants to disappear. Not as most do – ask a Dr.

I want to give you a painfully graphic example, which may demonstrate why I have particular concerns as to the ability of society to make rational judgements about the value of our lives. We have a so-called, RIGHT TO LIFE (ARTICLE 2) of the Human Rights Act and yet in 1999 an eighteen month old child, (‘Baby C’), with Spinal Muscular Atrophy (SMA) was denied ventilation to help her through her chest infection. It was deemed her “disability was too terrible to live a quality life”. In addition she would need “total bodily care for the rest of her life” and this would be a “burden on state resources and family support”. (5) The family did not accept this decision and took the hospital to court. The judge ruled for the hospital having received advice from a range of Doctors, all who stated quite categorically that no one with this diagnosis lives beyond the age of 2 years old and that if they did, life would be a living hell. The baby died as a result of being denied this routine health care offered to non-disabled babies with severe chest problems. Adults with SMA, including me, could tell a very different story.

Why do we put a value judgement on difference? Logically, if it is said that the Baby Cs of this world are so different that they would be better off dead then the same should be said of Me.

We have a very topical case at the moment, where sadly the disabled person herself, sees no option other than euthanasia as her release from disability. Whilst I understand her personal wishes, my outrage at the predominant social response to her situation knows no limits. So much so that a friend and I penned a letter to the Guardian.

“Your article about Diane Pretty (front page Saturday) raised some important concerns for us as disabled people. We both have a muscle condition, use electric wheelchairs and need a high level of personal care. We fully respect Diane Pretty's individual wish to end her life. However, it seems to us that she has given the press a real gift, tragedy on a plate and she has been rewarded for this by maximum coverage, none of which has ever questioned, even fleetingly, her suicidal tendency. One sure thing, the general public could be forgiven for getting the idea that anyone with a substantial level of disability will inevitably be deeply depressed and pre-occupied with thoughts of dying.

“We find this worrying, and feel somehow obligated to tell the world that we and many others like us are lucky enough not to be in that unhappy emotional state. However, we are pre-occupied with the low level of provision made to disabled people for care needs by social services and other bodies. Our vigorous campaigning on sometimes outrageous systemic injustices over the years has never been rewarded with more than tepid press interest. The message we get from this is that a pecking order of human rights concerning disability is emerging. The right to assisted suicide, which implies no expense to society and has high human emotional impact, is right at the top of the heap. The right, for example, to go to the loo when needed, which may have some cost implications and packs absolutely no emotional punch whatever is currently seen to be very much the poor relation.” (6)

Sian Vasey
Jane Campbell

Society seems content to consign Mrs Pretty to the Graveyard, yet no one would dare think the same of Stephen Hawking. Logically, if it is said that the Mrs Prettys of this world are so different that they would be better off dead then the same should be said of Steven Hawking. Or do we want Hawking to live because of his intelligence? Where do we draw the lines?

I believe that acceptance and celebration of our diversity at this level, is absolutely necessary for our own emancipation and feelings of self worth.

Rachel Hurst, in her plea to the Bioethics community at their 5th World Congress said,

“It takes a particular sort of courage to rise above these negative impacts and have a faith in your own worth, or the worth of your disabled family member. It takes courage and a clear understanding that disability arises from the social barriers of attitude and environment to your impairment, not the impairment itself. A similar sort of courage and understanding has been needed by women as they overcame the discriminatory images of subservience and earth mother or the courage and understanding that has been needed for black people to overcome slavery and apartheid. Just as we all recognise that society need the difference of women and people of different races and backgrounds, so society needs people with impairments”. (7)

So if we get through the hurdles of staying alive are we then accepted and included, now we have our anti discrimination legislation?

Well not quite, because there’s always those sticky issues of cost and, O yes the industry that depends on our dependency.

How can diversity be valued if disabled people continue to be incarcerated when they are simply regarded as too diverse to support in the community? It is done in the name of cost, which somehow in our consumerist society makes it all right. Placing people in institutions is not recognised as a denial of human rights in this country, and yet how can it be not when….

An adult man and woman who live in a residential care home were prevented from becoming engaged to marry and denied access to privacy so they might form a close and loving relationship, by the home’s staff. The staff refused to take them (they needed personal assistance to move) into a jeweller’s shop to buy a ring and used various methods to keep the couple apart (8)

Right to marry and found a family
(article 12)

I want you to know that after three years of this torment the couple persuaded some friends ‘outside’ to help them escape for the day and they married in a registry office in 1997. They are now living in a supported living flat employing personal assistants

Control over what happens in our lives on a personal day to day level, lies at the very heart of what we disabled people claim for ourselves. We call this simple philosophy - Independent Living. It is a state of mind rather than something we can physically or mentally accomplish in comparison with non disabled people. It is an entirely emancipatory philosophy which, if put into practice in the way we envisage, will empower us to make choices about how we want to live our lives and ultimately gain personal control.

Institutional settings, however well intentioned, can never be compatible with this philosophy. Their very existence relies on the notion that there will always be some disabled people who are incapable of making choices and controlling their lives, in a way that is ‘safe’ and ‘realistic’. Risk and economic reality (i.e. if it costs to much to support you in your community) are the most commonly used arguments to deny disabled people the fundamental right to the same freedoms enjoyed by the rest of society.

A handful of disabled residents collectively developed an escape plan back in the 70’s (Project 81) which, did force a change in social policy making it possible for disabled people to receive personal assistance in the community under their own direction. Hence the ILF. and later Direct Payments.

However Direct Payments and the ILF are not in themselves ‘independent living’. Even though these legislative changes have made it possible for many disabled people to stay out of residential care and build inclusive lives, for those incarcerated today, the route is far less easy and direct. This is especially true for disabled people with high support needs who, as we discussed earlier, are less valued by a society.

So what is to be done? Well firstly we have to acknowledge that independent living is a human rights issue. Secondly, society has to learn not to retreat from the nettle even though it causes pain. The voice of the so-called radicals that dare to tell it how it is must not be dismissed. The establishment must include us at the heart of debates about where and how we want to live our lives. The immoral argument put forward by the Minister for Disabled People in a commons debate in 1994, which said “there are situations when the cost of supporting a disabled person in the community becomes too great”, (9) must be addressed. £500 was the ceiling set. 6 years on that glass ceiling has been raised to £650. I was stuffed then, I am now. It is only the enlightened discretion of my own authority that keeps me from that I most fear. Prison without locks. Until independent living becomes a statutory right, I will not accept my diversity is truly supported or even wanted.

Disabled people have created our own arts culture to cut through some of the raw prejudices I have brought to you today. Instead of shocking and alienating those we want to reach, I think poems like the one I’m about to read, help convey messages of how we survive in a world which has so much to learn from our diversity and satiric take on life.

Simon Brisenden wrote this poem in 1987.

Vegetableism

I am a child of the earth
I’ve been a vegetable since birth

I went to a school for vegetables
And learnt how to go with meat
I grew up and wore the stigma
Of being something people eat

And in my very early vegetable days
I went through a religious phase
And asked god why he had made me
Just to drown in a pool of gravy
But his answer was not detectable
So I became a Marxist vegetable
And bringing in elements
Of a feminist critique
I formed a vegetable
Liberation clique

The vegetable is political I said
And tried to undermine the state
We advocated passive resistance
To the knife the fork and the plate

And now I am writing a history in three volumes
(From a post-structuralist point of view)
Of all the anonymous vegetable victims
Who have perished in hot-pot or stew. (10)


This poem exemplifies my experience of daring to move out of my accepted sphere of expertise and experience.

I want to tell you about my interview for this wizzy job as Chair of the Social Care Institute for Excellence (SCIE). There was I daring the establishment to consider me, a service user, for one of the top jobs in social care. I sat there facing four men in grey suits who were quizzing me about my capacity to respond to a sector that I was not a part of? Would I understand their needs? How would I balance my campaigning background with a situation where balance and objectivity was required? How did I think the social care sector would take me seriously? And I said without thinking, “What you mean is when they find out the cabbage has got a brain?” They reeled back in their chairs and I kicked myself all the way home for being so blunt. I am convinced two years ago that would have clinched my rejection. But do you know what? I think it’s one of the reasons why I got the job.

There is a readiness out there to try something different and to break the mould. This is sector where our diversity is most needed and, therefore has the potential to be most valued. Who else can change the nature of the relationship between those who give and receive support?

Disabled people have built an incredibly strong political and social movement. It must be strong to have sustained the constant under funding and attacks from the mighty charitable institutions and medical interventionists. It’s a bit like that song by Labby Sifri: The higher you build your barriers – the taller I become. And it’s so true. I believe the time is right.

The disability movement has emerged with solutions to our collective experience of exclusion. Yes, don’t forget. Non-disabled people lose from our exclusion. These solutions are based on, as Mike Oliver puts it: “three big ideas”, which have emerged exclusively from our movement and have been based entirely on our experiences. The first, of course, is the social model of disability. Full Civil Rights is another and independent living is the third. In order to value diversity society needs to resource these three solutions . Power will have to change hands.

We want to contribute - not as a rung on someone’s ladder to a charitable heaven – but in our own right, with our uniqueness recognised and our diversity celebrated.

 

Footnotes

(1) Ratzka A (1998) Crip Utopia Independent Living Institute, Stockholm

(2) Campbell J and Oliver M, (1996) Disability Politics, London, Routledge

(3) DRC (2001), Strategic Plan, DRC publication

(4) Oliver M (1999) Disabled People and the Inclusive Society, Public Lecture, Strathclyde Centre for Disability Research

(5) Daw R (2000), The Impact of the Human Rights Act on Disabled People, Report prepared for DRC & RNID

(6) Campbell J & Vasey S, (30.10 2001), Guardian letter

(7) Hurst R (2000), Ethics and Disability, Celebrating Diversity, Paper to 5th World Congress on Bioethics

(8) Daw R (2000), The Impact of the Human Rights Act on Disabled People, Report prepared for DRC & RNID

(9) Scott N Commons Debate on the ILF 1994

(10) Brisenden S (1987), Poems For Perfect People, Private publication

 

References

Brisenden S (1987), Poems For Perfect People, Private publication

Campbell J and Oliver M, (1996) Disability Politics, London, Routledge

Campbell J & Vasey S, (30.10 2001), Guardian letter

Daw R (2000), The Impact of the Human Rights Act on Disabled People, Report prepared for DRC & RNID

DRC (2001), Strategic Plan, DRC publication

Hurst R (2000), Ethics and Disability, Celebrating Diversity, Paper to 5th World Congress on Bioethics

Morris J (1991) Pride Against Prejudice, Women’s Press

Ratzka A (1998) Crip Utopia Independent Living Institute, Stockholm


NCIL (2001) Creating Independent Futures, Research and Evaluation, pub Leeds University Disability Press

Oliver M (1999) Disabled People and the Inclusive Society, Public Lecture, Strathclyde Centre for Disability Research

English