The quest for people with disabilities is to live an ordinary life, like that of everyone else. To be valued. To be included. To have a meaningful occupation. To live and die and form partnerships and to have access to everything everyone else has.
I do not think people with disabilities cannot live a good life. While disability is bad, and to be avoided wherever possible (through diet and road safety and immunisation and similar public health measures), life with disability can be good. People’s lives go well when they are included and valued. Those people with disabilities who lead a good life, despite disability, are people who can use the loo, and get on the bus or train, and go to work. In other words, they live and travel and work in accessible environments. They can achieve reasonable accommodation – in other words, they have flexible working and barrier removal. They can get the assistive technologies they need, whether those be wheelchairs, crutches or other aids. In other words, people with disabilities often have fewer choices, but where those choices are met, they can have good lives.
Fifty years ago, Normalization in the Nordic countries took off at the same time as the disability rights movement in Britain and America, which started with the Union of the Physically Impaired Against Segregation in UK, and the Independent Living Movement in the US. All of these ideas were against segregation and in favour of inclusion of people living ordinary lives next to each other, in barrier-free societies, where disabled people were not devalued, remembering that at this time, people with disabilities, particularly many people with intellectual disabilities, lived in big institutions, often far away from their family, let alone population centres, where they lived and died without any meaningful work or activity.
The Nordic countries were dominated by the concept of Normalization, which, in the words of 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”.
In UK and US, the focus of de-segregation was people with very significant physical impairments, and the key to achieving independent living was personal assistants, where people could employ staff to break the link between physical dependency and social dependency: you could be very physically dependent yet be completely socially independent. Large-scale de-institutionalization of people with mental illness and intellectual disabilities has taken place, powered by outrage at abuse scandals in institutions.
Of course, twenty years ago Norway was the first place in the world to close all its institutions. And I note how in everyday life in the Nordic countries, people
with disabilities are included in the mainstream, on the bus and in popular media. They are not separated. And I note how three quarters of families are enthusiastic advocates of deinstitutionalization, whereas in many countries, families are pushing for relatives with disabilities to be kept safe and looked after in institutional settings. All this is good. But, as I read in the analysis by Jan Tossebro, expectations about employment, social networks and social integration never materialized.
In the UK, you have the dominance of what my friend Harry calls ‘special world’. Her son Charlie, who has Down syndrome, lives in his own house with personal assistants. However, his friends with intellectual disabilities live in group homes with staff. And if you live in a group home, it is very difficult to make your own choices. Whenever he wants to go swimming, Charlie goes with his support worker independently and does his swim.
Charlie has a friend he used to go swimming with, when he lived with his family at home. But now he lives in a group home, Charlie can never go swimming with his friend, because his friend cannot do his own thing. If the residents in the group home want to go swimming, they all have to go swimming. There are not enough staff for some to go swimming, and some to stay home.
In Norway, it worries me that we are now in an era where the number of people living together is creeping back up. In 1994, people lived in settings of an average of four people together. In 2010, that average had crept up again to eight people. 40% of people lived in a group home of seven people or more. This is obviously to save money. I don’t think a group home of eight people is an institution, and I know these flats are in ordinary streets, not separated far away. So it’s much better. But it’s not normal.
Connected to this, I note how rates of personal assistance are very low in Norway. I think you have about 3,000 people in receipt of PA, for a population of 5 million. In England, we have about 70,000 disabled people, including people with ID, employing their own staff, for a population of 50 million. If I’m right, we have more than twice as many people having personal assistants. And if, like Charlie, you have personal assistants, you can live an independent life: you can make your own choices, you can potentially go to work, or go swimming, and you can live a much more normal life, whether you work or not.
But I don’t want to overstate normalization in the UK. How many personal assistants are there? 150,000. And how many people work in social care? Well, just in intellectual disability and autism there are 660,000. Only 31% of people employ their own staff – in other words, have a chance of independent living. More than two-thirds buy in homecare staff from agencies.
And despite independent living, the disability employment gap, which is the ratio between employment of disabled people and non-disabled people, is very stubborn. 81.1% of nondisabled people are employed, and 52.3% of disabled people are employed. Historically, you are approximately twice as likely to be unemployed if you are disabled. The disability employment gap has reduced in recent years, but a lot of that is because adults have retrospectively been diagnosed as having autism, ADHD or dyslexia. In other words, the acceptability of neurodiversity has meant that it looks as if more people with disabilities are employed. However, people with complex disabilities remain under-employed. Only 7% of people with intellectual disabilities have jobs.
So just to recap: the Nordic countries closed institutions to achieve a normal life, and there are many improvements, but they have not quite achieved normality. And in UK, we went for independent living to achieve a normal life, and there are many improvements, but we have not quite achieved normality.
Global advances
On June 10th 2011, nearly fifteen years ago, a team of us from WHO and the World Bank launched the World Report on Disability at the United Nations in New York. I remember well the months of writing, preparation and checking. I also remember the films we made with women with disabilities, and the launch film I made with Professor Stephen Hawking. The actual day was a flurry of organisation, to the extent that I remember assistants’ feet were bleeding with all the running around in smart shoes.
The World Report on Disability was the first of its kind, and was based on the United Nations Convention on the Rights of Persons with Disabilities; it was welcomed and supported by the disabled people’s movement. The most notable intellectual contribution was probably the new prevalence data on disability: 15% of the world’s population amounting, at that time, to one billion people. These sorts of reports get front page coverage because of new data, and sure enough, I did interviews with CNN, Al Jazeera and The Guardian.
Any World Report is only worthwhile if it’s used. The 15% prevalence estimate has been used by organisations of persons with disabilities, UN Agencies and countries, and by many, many researchers. The Report also was pioneering in laying out the major areas of concern: health, rehabilitation, enabling environments, assistance and support, education and employment. If we were doing the Report again today, we would have to include social protection, which was not a big issue in 2011.
I want to say one thing about research. I said the World Report was evidence based. We looked for data everywhere: for national statistics, RCTs and systematic reviews. But to my shame, as a disability studies researcher, we did not find many of our answers within the disability studies literature. I think the Nordic literature is more helpful. But a lot of the research in our field is not useful, does not have impact, and cannot be used to improve the lives of disabled people. I think that’s a real indictment. Most of us are publicly funded. We research the right to ask questions which are more abstract and general, but I think we should also try and answer questions which matter to the lives of disabled people, from Trømso to Timbuktu.
However, the “million dollar question” is whether the lives of persons with disabilities are distinctly better, as a result of the impact of the World Report on Disability. We could ask a very similar question of the impact of the Convention on the Rights of Persons with Disabilities. I think that lives are generally better, thinking worldwide, and the World Report and the Convention have helped in that trend. Putting disability inclusion on the policy agenda, highlighting how mainstreaming is the way forward, and how barriers in society represent the biggest problems for most disabled people, has been very helpful.
But the Convention on the Rights of Persons with Disabilities, in particular, was revolutionary. It is 15 years since that was adopted by the UN in December 2006. It was not intended to initiate a trend towards improvement. It was meant to be a complete step change in provision. And that has not happened.
In writing the World Report, the CPRD was our moral compass. The CRPD talks about “nothing about us without us”, it talks about equality and non-discrimination, and inclusion. It is a vital document. But it is also, because it is a human rights document, very individualistic. It is about the rights that persons with disabilities can demand from society. It is about rights not charity.
The CRPD does not mention the community. It barely mentions the family or non-disabled people, even though most of us spend all our time with non-disabled people and much of it in families. It certainly does not mention charity. Individuals with disabilities have the right to make choices and speak for themselves. Individuals with disabilities have to claim their rights. In fact, I think the human rights agenda represented by the World Report on Disability and CRPD, and the whole UN system, have not just failed to liberate disabled people. They have done worse than that. They have created inequality between disabled people.
Some people, like myself for example, have done very well out of a human rights agenda. Disabled people who have had a university education, who can flourish in a knowledge economy, have done brilliantly. If you have a physical impairment, or you have a visual or hearing impairment, you have the potential to do really well.
We live in an era, at least in high-income countries, where medicine can remedy many ills, and where technology can compensate for many disadvantages. I wrote this talk at my desk in my home on my computer. If I needed the latest social care statistics, I just googled them. My son is a senior civil servant, working on the digital economy: he works from home. My daughter works in social work, but for a third sector disability organisation: she works from home. Even if you are not in high powered jobs, you can do clerical work on a computer, in an office, if you are physically disabled. You can teach. You can do marketing or business or many, many roles. It’s harder to be a fire fighter or a soldier or a farmer, but many jobs are newly accessible to disabled people.
The Covid era, and the way everything has been done remotely, is actually liberating for many educated disabled people who flourish in the knowledge economy. Access barriers and communication barriers and fatigue aren’t such a factor any more. We are equal at last.
But this is not all disabled people, by any means. We tend to think about disabled people as a homogenous group. The CRPD encourages this agenda. The World Report encouraged this way of thinking, because WHO said 15% of the population were disabled, amounting to one billion people. It suited the authors of the World Report, and it suited the disability movement, to see us as one vast undifferentiated constituency.
But we are very, very heterogeneous. Half of us are older people, for a start. And older people have not been well represented in this revolution. Social inequality is a big issue. Sexual and racial inequality is another big issue. And above all, different impairments are a big issue. I think we need to think about the differences between disabled people, differences that can fuel inequality.
- To start with, those people with disabilities where reasonable adjustment and barrier removal means they can fully participate in almost all areas of life. This is the group like me and my children, or all those others who have flourished in the modern high-income-country knowledge economy. If we have a truly level playing field, if we remove unnecessary barriers, if we promote equality and mainstreaming, then this group will, by definition, flourish.
- People with disabilities where they require further support, but can then participate in most areas of life. I am thinking of those people with mild to moderate learning difficulties or autism who could have a job, or else who could benefit from theatre groups or all the other social and cultural activities that have flourished. This group will not benefit as much from mainstreaming, because they require additional targeted interventions to flourish. We will have to spend more, and do extra to give them a chance of living a normal life.
- Then finally, people with more profound disabilities where, even with support, they cannot fully participate. I am also thinking of our friend, the philosopher Eva Feder Kittay, who writes about her daughter Sesha in her book Learning from my daughter. I am thinking of many frail older people too. I do not think that choices and rights make a huge different to them. I am not sure it makes much difference if they are in residential settings or in the community. In fact, they might be more lonely and isolated in the community if we are not very careful. They need to be free of violence and abuse. They need to lead good lives. But this is going to depend on the specific interventions and services which we can develop, and the imagination with which we develop them.
Because the first group have advanced and become more integrated, thanks to normalization, many of the second group lead much more included lives. But the third group are still segregated: they may live in the community, but they are not of the community. Those who have access to personal assistants, like Charlie, can lead fairly normal lives, but most people do not have that.
To recap, we can think of three routes to living a normal life:
· The normalization and shutting institutions that went on in the Nordic countries;
· The Independent Living and personal assistance that went on in the Anglo-Saxon countries;
· The Convention on the Rights of Persons with Disabilities that went on worldwide.
I would argue that none of these three options has fully liberated disabled people. You could say it is still early days, but I think 15 years, in the case of the CRPD, and 20 years, in the case of closing institutions, should be enough to see a wider transformation of society. And where these options may actually have increased polarisation between different groups of disabled people, I think we have a problem.
To be fully included and respected, in the Western liberal world “the moral status and value of persons is contingent on their capacity to take part in a number of mutual reciprocal ethical obligations, which has profound and negative implications on people with disabilities, particularly people with cognitive and severe physical disabilities” (Oche, 2020, 2).
In mentioning Eva Feder Kittay’s work, I feel that we need to move away from Independence and Individualism. The Independence of Independent Living has risks. The Individualism of individual social rights has dangers. And if we are going move away from Independence and Individualism, I think we are also going to have to move away from Normality. Of course, we do need disabled people to achieve independence and individualism and normality more than they ever did before. We need to remove barriers to independence and individualism and normality. But these cannot be our goals.
Conceptually, where can we find the answers? I would say in two or three places. The first, which I am not going to say much about, is in Virtue ethics, and the Aristotelianism which talks about eudaimonia, which as you know is Greek for flourishing. Because I think flourishing should be our aim, and I am much happier about striving for this than in trying to achieve Individualism, Independence or Normality. The second, is in Feminist Ethics of Care, which is people like Selma Sevenhuisen and Joan Tronto, and probably Eva Feder Kittay would sit fairly well in this group. As you know, this approach does not talk so much about rights and independence. They talk more about responsibilities and interdependence. They talk about mutuality and emotions. Kittay criticises John Rawls, the great contractarian liberal philosopher, for failing to take into account dependency. She says liberal ideas of equality are an illusion, because they take the idea of dependency for granted. She wants to make the capacity to care intrinsic to the theory of justice. But Kittay and Tronto and Martha Nussbaum, the great Capabilities Theory scholar, all come from a North American tradition, where individualism is in the water they drink and the air that they breathe.
A third option is the African concept of Ubuntu. Rather than the individualism of our Western tradition, this is the concept you find in John Mbiti: “I am who I am because of who I am in other people”. An African Path to Disability Justice by Oche Onazi is a very thorough and helpful analysis of African philosophy. Perhaps our way forward lies in the relational community which he talks of. Where the only criterion for being treated as human is being human, as Geoffrey Tangwa says (Onazi 2020, 122). What matters is relationships, not capacity, as we see in the L’Arche communities. It is doing things with, not doing things for, let alone doing things by oneself. Here, mutuality is not about the abilities you can bring, but in the relationality you can share, and in particular the gift of companionship, which all persons with disabilities possess, even if sometimes it is the only thing they can do. We are compelled to take ethical action without waiting for the other to reciprocate, because that is what it means to be human, as we also read in the existential philosophy of Immanuel Levinas.
Of course, this ethical action is not automatic. We require Ubuntu moral education, as Etieyibo (2017) writes, to nurture children to become good civic citizens, to nurture the moral and intellectual virtues, where virtue is an acquired quality of character that contributes to the flourishing of individuals. Now, the more cynical readers will respond by saying this is only so much philosophical hot air. We cannot achieve such a world. Individualism has gone too far. We are inevitably selfish beings. We cannot do better than capitalism, competition and individual rights.
Global trends
I want to mention three developments briefly, which show that the old ways are no longer the necessarily best ways. The first is AI. Capitalism is being rapidly transformed, to the extent that humans are not required to work in the same way. Mass production and mass automation increasingly destroy jobs, whether blue collar or white collar. This offers us the great potential to decouple the work you do from the value you have. In this future, those who cannot work have potential nevertheless to have value.
The second is Universal Basic Income. The popularity of this idea is related to the great manufacturing change on which we are engaged. But again, UBI decouples, to some extent, your value to society from the work you do for society. Where everyone enjoys a basic income, just because they are human, then the division between those who work for a living, and those who have a welfare benefit from the state, is eroded.
The third is the Climate Crisis. We now must all know that we cannot go on working, producing and consuming in the old way. Individualism breeds selfishness which goes towards catastrophe. Human life, indeed all life, is unsustainable in the old way. We are in an age of mass extinction. If we are to have any chance of survival, we are going to have to do things very differently.
In this context, we cannot afford individualism, because it leads to selfishness. We cannot afford the old normal, because it leads to unsustainable solutions which destroy the environment. And we cannot think in terms of independence, because we realise how interdependent we all are, and how dependent we are on the health of the ecosystem and the choices made by others.
Let me repeat: We require moral education to nurture children to become good civic citizens. We need, as a society, to nurture the moral and intellectual virtues, where virtue is an acquired quality of character that contributes to the flourishing of individuals. Ubuntu is an option. Christian moral teaching is an option.
The problem with these options, which appear more communitarian, and more based on values, is that the individual may be lost. For example, many good Christians send money or otherwise support institutions in which individuals are silenced. In many families, the father speaks for the rest of the people in the household. Often the big man, or the boss man, gets to rule everyone. In the disability world, this can be paternalism, silencing of people with disabilities, care which equals control, even segregation in the best interests of residents.
We need some of the human rights approach, some of the individual rights approach, but this needs to be tempered with moral values and a more communitarian way of life, a more Ubuntu way of life, a more Christian way of life, in which people are valued not for what they earn or how much they are in the media, but because everyone is equally valued, citizens of society, or part of God’s Kingdom, or simply in connection, in communion with all.
References
Eva Feder Kittay
Oche Onazi
Tom Shakespeare
Jan Tossebro