Tom Shakespeare

I was very lucky to be born disabled in 1966, just as the disability rights movement was gaining strength worldwide – I was born into an era of disability activists agitating for recognition that we are human beings like any other, and that we should be treated with respect and dignity.

This is a political claim, but it’s also a theological one that has resonance with the fundamental precepts of most religions. As a Quaker, for example, I am taught to look for “that of God in every one,” in the words of George Fox, the founder of the Quaker movement.

In most cultural contexts and for many centuries, disabled people have struggled for inclusion and survival. Throughout history, many disabled children have died or been left to die. Although a few disabled adults achieved prominence in previous eras—including a blind Syrian poet, a dwarf civil servant from Ancient Egypt, and a naval hero with multiple impairments—the majority have found it extremely hard to stay alive.

Over the ages, religion has been a mixed blessing to people with disabilities. The ethos of charity—understood as dana in Buddhism and Hinduism, tzedakah in Judaism, and zakat in Islam—has enabled some disabled people to find support and comfort. But traditional scriptures also describe impairment in terms of uncleanliness (Leviticus 21:16-23) or view problems in terms of possession by devils (Matthew 12:22 and Mark 5:2-20). Some scriptures also imply that a person is disabled as a punishment for their own sin or that of their parents (Exodus 20:5 and Matthew 9:2).

In the current moment, there exists much potential for religious communities to ally with the disability rights movement in creating accessible spaces of worship, new theological approaches to disability, and shaping a new spiritual approach to disability justice.

The Social Model of Disability

Disabled people have organized powerfully within the last half-century to challenge our social oppression and cultural exclusion. As a group we have demanded the right to speak on our own behalf. We have rejected the idea of charity and pity. We have promoted the concept of human rights and equality. We have condemned institutions and asylums—which were once posited as appropriate oases of protection—as venues of segregation and abuse. This movement has been wide and profound, and very welcome.

The key ideological principle at the core of the global disability movement is called “the social model.” The social model of disability contends that disability is not a medical issue but rather an equality issue like gender, race, and sexuality: the problem is one of social structures, not individual bodies. In other words, environmental barriers, negative attitudes, and the inaccessibility of systems and structures are what render a person with impairment disabled. A slogan associated with the social model is “disabled by society, not by our bodies.” It is deeply resonant with a verse from Hebrews, “Make a level path for my feet, so that the lame be not disabled,” which sums up how physical environments can either enable or disabled people with different forms of embodiment. The social model enables people with impairments to stop thinking of ourselves as the problem: the true problem is the oppressive context.

A Level Playing Field Is Not Enough

The social model of disability results in a “level playing fields” approach to equality. It is reflected in legislation such as the UN Convention on the Rights of Persons with Disabilities (2006), the Americans with Disabilities Act (1990), and many other pieces of national legislation. By drawing an analogy with gender, race, and sexuality, the social model of disability builds on the analyses and work done by feminists, racial justice movements, and LGBT organizing to stake a claim for disability rights. And to a large extent, this approach works. If people can get access to health and rehabilitation, rely on accessible transport from accessible homes to accessible schools and workplaces, and receive what human rights lawyers describe as “reasonable accommodation” in education and employment, then they can learn and earn and lead a “normal” life. Removing discrimination and making a few changes to equipment and schedules can often equalize the situation. And this has been my personal experience.

However, is this enough? For someone with a physical or sensory impairment such as paraplegia, blindness, or deafness, then it may well be. Remove the barriers, give us access, and we should be able to compete.

But what about someone with an intellectual disability or a serious mental health condition? What about someone with Chronic Fatigue Syndrome who can never work the same hours and at the same intensity as a nondisabled person? In these cases, the level playing field argument breaks down. Many people with disabilities are not able to earn a living in a wage-based economy or have a restricted capacity to do so. Barrier removal and equal treatment are not enough to ensure that all disabled people enjoy a standard of living equivalent to others, let alone achieve a good quality of life in the fullest sense. Some people will never be able to compete in a liberal free market order. Even if everyone is seen as having equal value as a citizen or in the eyes of God, not everyone is equally able to meet their own needs within a market-based society. And many people with disabilities find themselves isolated in the community.

Developing an Ethic of Care

To address the limitations of the equality-based model and ensure a good quality of life for all, we must move away from liberal individualism—which links its notions of equality to ideas of work—and develop an alternative ethic.

This alternative ethic can be found in a number of traditions. Feminist philosophers such as Eva Feder Kittay, Joan Tronto and Selma Sevenhuijsen have explored the notion of an ethic of care that focuses on values such as inter-dependence and mutuality, rather than simply independence and rights. Kittay applies this idea to disability politics in her book Love’s Labour, writing

, “Grasping the moral nature of the relation between unequals in a dependency relation will bring us closer to a new assessment of equality itself.”

Meanwhile, Kenyan theologian John Mbiti and other theorists in southern Africa have been exploring the ethic of ubuntu, which talks about how people depend on others for their identity. Rejecting René Descartes’s postulation, “I think therefore I am,” Mbiti explains the philosophy of ubuntu as asserting that “I am with others, therefore I am.” Both feminist ethic and Ubuntu philosophers are highlighting the importance of the relational.

In a different vein, economist Amartya Sen and philosopher Martha Nussbaum have talked about enhancing capabilities. Rather than understanding development in terms of GDP, these thinkers stress that we should give people opportunities to develop capabilities they value.  Welfare is multidimensional, they argue, and we should be increasing true freedom to lead better lives. Both Sen and Nussbaum have been described as Aristotelian because instead of offering utilitarian calculations, they emphasise what it takes to achieve human flourishing.

And within the Christian tradition, thinkers like Hans Reinders have been challenging us to consider how we reach out to and include people with intellectual disabilities and others. For example, in his book Receiving the Gift of Friendship, Reinders argues that we must regard people as equals, regardless of their impaired functioning: humanity is not about what we achieve but about being chosen to be God’s friend, and this applies to everyone. And in practical terms, philosopher Jean Vanier offers models for how we can live alongside vulnerable people and promote inclusion. Vanier has set up communities in France and worldwide where people with intellectual disabilities lived alongside nondisabled people in fellowship. Vanier’s L’Arche communities prevent people with disabilities from being segregated in institutions or isolated within a wider community, instead offering connection and support. In his book Becoming Human, Vanier argues, “The weak teach the strong to accept and integrate the weakness and brokenness of their own lives.”

The “Spiritual Covenant with America” developed by Tikkun and its Network of Spiritual Progressives offers another alternative ethic that places values of love and care over values of profit and domination. But I’d like to see it explicitly address issues of disability, assistance and support, and caring solidarity.

Alternative ethics such as these share a religious quality in their emphasis on the valuation of individuals not for their ability to work but for the sacred spark of being within them. As such, they may provide the framework for developing a deeper and richer approach to disability, thereby offering a necessary rejoinder to the “level playing field” emphasis in the disability rights movement. We need to change social systems and social values, not simply try to integrate people with disabilities into existing structures. For example, instead of only stressing barrier removal, we need to start emphasizing mutuality. We need to create more social firms (companies aimed at employing people disadvantaged in the labor market) and other forms of employment. We need to develop better strategies to enable people with disabilities to become part of the community, rather than being isolated. We need to revision the traditional value of charity and think about what solidarity demands of us. As Reinders argues, if we approach the problem of disability with a theological emphasis, or from the perspective of eternity, the differences between human beings are not so significant—we are all vulnerable and frail, or soon will be, and our time in the world is brief, which puts both our achievements and our dependencies into context.

Footnotes, resources and further reading

Tom Shakespeare teaches medical sociology at Norwich Medical School in the UK and is active in the global disability movement. For further reading, check out his book Disability Rights and Wrongs Revisited and read his blog at disabledlives.blogspot.com.