The Hugh Price Hughes Lecture 2015
The Enabled Life: Rethinking Disability
Despite changes in legislation and increased awareness of human rights, disabled people frequently find themselves isolated andmarginalised. Why is this?
How best can we challenge age-old stereotypes of disability and find new ways of enabling communities to celebrate the lives of all people without exception.
According to the World Health Organisation there are 1 billion disabled people (or about 15%) in the world. Their report comments that
People with disabilities are among the most marginalized groups in the world. They have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than people without disabilities.
They are more than twice as likely to find health-care providers' skills inadequate. Disabled people are four times more likely to report being treated badly and nearly three times more likely to be denied health care.
People with disabilities are more likely to be unemployed than non-disabled people.[1]
They are more vulnerable to poverty than other people.[2]
Disabled people can live and participate in the community yet all too often they are not enabled to do this.[3]
The language of disability is not now restricted to the language of impairments or handicap. We now talkabout ‘activity limitations’ and ‘participation restrictions’. We know that a person is not just disabled by their physical or mental impairment but also by the social environment in which they live. They face barriers of discrimination, illegality, superstition, physical access, organizational behavior and poor resources because in many countries they are not only a low priority but also an embarrassment both to family and society. Sometimes they are hidden or their existence actually denied. They are not only disabled by their impairment. They are disabled by the society in which they live.
For this reason disability is now seen as a human rights issue and rightly so. The convention on the Rights of Persons with Disabilities (CRPD) is meant to protect and promote the rights of people with disabilities and has been ratified by over 130 countries.
In income terms they are the poorest of the poor with women, children and the elderly being particularly vulnerable. But the poverty they experience is not just that of a lack of income or even the limitations placed on them by their impairment and the subsequent restrictions of their participation in work and community life. It is also about how they are viewed by those who are abled[4] and how that dominant worldview comes to influence their own identity.
Functionally, it may be only too obvious that a person has an impairment. But the fact that a person has impaired neurological function and has seizures or is blind or deaf does not mean that they should be treated as any less human as a result. Yet for this to change means that the rest of the population must be educated to view disabled people with equity and to pass laws which give them their rights. They face a poverty of identity that is difficult to change. This is at the heart of many of their problems. In other words they are seen differently to other human beings.
It arises because human identity is governed by the concept of what it is to be normal. Of course no one person characterizes the norm, at least not for the whole of their life, but we constantly measure each other against it. Yet no one escapes the fragility of the human body forever. Looking at our lives in their totality, we are all impaired. Many of us will succumb to one form of dementia or another; contract cancer or heart disease or discover that we were only ever temporarily able-bodied. Yet we continue to focus on identifying people we regard as disabled and not look at the identity of those who regard themselves as non-disabled. They are the privileged, the normal.
Most of us are content to be thought of as approximating to what society regards as the norm as to do so makes us invisible. We blend into the background with others like us. That means that we can get on with our lives without comment. The ability to control our own story is highly prized in our society. We make choices rather than have others make them for us. As soon as we lose control of our own story we become more visible, more reliant on others making choices for us which may not be the ones we would have made for ourselves.
I am taken to a day-care centre (because I am meant to be lonely) where I do nothing but sit next to people with whom I have nothing in common; eat a lunch which is of appalling quality and then wait again while a van goes round the houses dropping people off until I get back to the sanctity of my own home.I feel as if I have been hijacked.
In our society being able to choose is associated with power. Powerlessness is associated with an inability to project one’s own humanity in the community.
I have injured my leg and am walking with a crutch. It is a simple illustration of the point. It has made me visible in a way I would rather not have happened. People have treated me differently, assuming I wanted theaccessible toilet and speaking to me in a different tone of voice.
Sociologist Anthony Giddens has talked of self-identity being the capacity to continue to tell our own story. There is no reason why a disabled person should feel that the story they tell about their lives has to be negative, yet so often another person might expect that because they are disabled, their story will be negative.
`Self-identity is not a distinctive trait, or even a collection of traits, possessed by the individual. It is the self as reflexively understood by the person in terms of her or his biography' (Giddens, 1991, p.53).
He continues,
`A person's identity is not to be found in behaviour nor - important though this is - in the reaction of others, but in the capacity to keep a particular narrative going' (Giddens, 1991, p.54).
So society may treat disabled people not only as deficient in that they have an impairment but because it is assumed that their story is going to be negative or even more that it owes so much to the actions of others (such as carers etc) that they have little to say about themselves. In fact they,themselves, may have been so affected by the world they live in that they also believe that their story is only negative. That is why in order for disabled people to live in a more equal society, they also have to change.
So while the abled person values the kind of invisibility that allows them to only stand out from the crowd for things that draw attention to their ability and power, so the disabled person would like to be in the same situation. We all want to be visible for good reasons rather than bad. Ironically, disabled people often say that they feel invisible. However, this is quite different. They feel invisible because they have been noticed (they are visible) but because they are being actively avoided.
The story is told of a woman with multiple sclerosis who was in a wheelchair. He was used to being ignored while people talked to the person pushing her. Then one day she broke her leg. She had a large and obvious plaster cast on. Things changed. People assumed she was a ‘normal’ person who had broken her leg and would soon be up and about. Then the cast came off and people ignored her again. She had gone from being ‘them’ to ‘us’ to ‘them’ again. It was not that as ‘them’ she was invisible, it was that she was visible but avoided.
A recent survey by SCOPE brought this out recently. It found that a high proportion of people in our society felt awkward when talking to disabled people and that a high proportion of some groups actually avoided doing so.One-fifth of 18-34 year olds actually avoided talking to a disabled person because they weren’t sure how to communicate with them.Two-thirds of the British public admits that they feel uncomfortable talking to disabled people. But nearly half of the British population (43%) said that they did not know anyone who is disabled.
One of the reasons why the position of some disabled people has changed in our society is that they have moved beyond the negative story that seemed inevitable if they were constantly compared with those who treasured their own capacity to call themselves normal. When disabled people saw that the issue was one of rights they found a positive identity in fighting for those rights. The advent of the disability movement meant that disabled people could begin to see themselves as ‘belonging’ to a new group in a new way and being given a story to tell which was positive and even powerful. This approach became global as others picked up the necessity of even the poorest person receiving their human rights.Laws such as the Equalities Act 2010 resulted from such campaigning.
How does the church view this? It has a proud history of fighting for the cause of those who are denied their rights and a lamentable history of being on the side of those who oppress powerless people. But, fundamentally, it founds its view of humanity on being made in the image of God. For this reason we are to treat each other with dignity and respect because we are made in God’s image. We cannot treat another human being as less than human because they are created with purpose and meaning by God.
When Jesus was alive he spent a great deal of time with disabled people and placed them at the heart of the Kingdom of God. Although he healed some, he showed in the parable of the Banquet in Luke 14 that being healed was not a prerequisite to being accepted by God or to entering the kingdom of God.
Paul, basing his teaching on the life and work of Jesus also balances his belief in the ability of God to heal with the forceful requirement that each church community deliberately puts those who are considered by the world as weaker or ‘of less honour’ at the heart of the community. In other words the church is not to ape a competitive, ambitious world by excluding those it regards as unacceptable, but is to show an inclusive community where those who are disabled by the world are enabled by the church to experience what it truly means to be made in the image of God.
This image is not only a mark we carry as individuals. It is also essentially social, for God in being Trinitarian is a social God. It is for this reason that words such as ‘love’ or ‘justice’ are essential to the Christian faith and constrain us from doing whatever we want. We live in community with one another and it is in reflecting unity in diversity that we are most human as a community.
Jean Vanier the theologian and founder of L’Archehas said that profoundly disabled people are the prophets to a materialistic world. They pose a different way of life to the consumers among us. This is of prime importance because as one might conclude from the SCOPE research, one of the greatest problems facing disabled people is isolation. It also poses to us the importance of facilitating the ministry of disabled people rather than always to disabled people.
This has led to a great deal of reflection on the nature of friendship in the context of disability. Hans Reinders, in particular, in his book ‘The Gift of Friendship’ has talked of this being one of the keys to eradicating inequality. He feels that after all the work on human rights has been done and all the laws changed, we are still not sure how they should affect our own behaviour. After all you and I can still go our own way as consumers and ignore, as we always have done, disabled people.
What Christianity shows us,Reinders says, is that we need to embrace friendship. What a person with profound learning disabilities wants, is not so much their rights, but to be chosen by me as their friend purely by virtue of their being them. Such a view comes directly from Aristotle in his extensive work on friendship. We love our friends for who they are not for what we can get out of them or even give to them.
Jesus seems to concur. We are to love those who are different from us, and furthermore, we are to take the initiative in doing so. This initiative taking is what characterizes the forming of the church.
It does not lessen in any way the necessity of fighting for rights to education, housing, health-care or employment for disabled people but it takes us beyond the political to the personal where we are most protective of what we construe as our right to a normal life.
It is only when we deal with these issues of poverty of identity that we will have a healthy society. The irony is that those who consider their normality as inviolate are those whose identity is as impoverished as those they exclude and marginalize. We find our identity most in those who are different from ourselves and those who only associate with people who think and act like thematrophy. Friendship enables us to drop our fears and flourish as a result.
Cited
Anthony GiddensModernity and Self-Identity: Self and Society in the Late Modern Age (Polity Press: 1991)
RKM
10 March 2015
[1]Global data show that employment rates are lower for disabled men (53%) and disabled women (20%) than for non-disabled men (65%) and non-disabled women (30%). In OECD countries, the employment rate of people with disabilities (44%) was slightly over half that for people without disabilities (75%).
[2]People with disabilities have worse living conditions–including insufficient food, poor housing, lack of access to safe water and sanitation–than non-disabled people. Because of extra costs such as medical care, assistive devices or personal support, people with disabilities are generally poorer than non-disabled people with similar income.
[3]Even in high-income countries, between 20% and 40% of people with disabilities do not generally have their needs met for assistance with everyday activities. In the United States of America, 70% of adults rely on family and friends for assistance with daily activities.
[4] The term ‘abled’ recognizes that non-disabled people are actually privileged by the same society as disables others.