• Podsoc #18

Disability and human rights:

In conversation with Tom Shakespeare

[Transcript for this podcast is found int he tab below]

In this episode, Tom Shakespeare brings the issues that affect people living with disabilities to the fore. Sexual health, personalization of care and the Convention on the Rights of People with Disabilities are high on the agenda.

Tom Shakespeare trained as a sociologist and worked at the Universities of Cambridge, Sunderland, Leeds and Newcastle before joining the WHO in 2008. His books include Disability Rights and Wrongs (2006), and The Sexual Politics of Disability (1996). At WHO, he was an author and editor of the World Report on Disability (2011). He has been involved in the disability movement for 25 years.

Recommended citation – APA6th

Fronek, P. (Interviewer). (2012, August 9). Disability and human rights: In conversation with Tom Shakespeare.[Episode 18]. Podsocs. Podcast retrieved Month Day, Year, from http://www.podsocs.com/podcast/disability-and-human-rights/.

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  2. Transcript

Transcription Podsocs 18: Disability and human rights: In conversation with Tom Shakespeare

Thank you to Marcia Wood for this transcription

[musical intro to 00.10]

Hello, and welcome to Podsocs, the podcast for social workers on the run. Brought to you by a bunch of social workers from Griffith University in Australia.
I’m Tricia Fronek, one of that bunch, and we’re just basically really glad you found us. So, happy listening.

Today on Podsocs we’re really pleased to speak with Tom Shakespeare. Tom has been involved in the disability movement for 25 years, and currently works with the World Health Organisation. He’s published books “Disability rights and wrongs”, and “The sexual politics of disability”. The sound in places might come and go. Please bear with us, it’s very worthwhile listening to.

Trish: It’s good to have you on Podsocs, Tom!

Tom: It’s a pleasure, Patricia. Thanks for having me.

Trish: And you’re speaking to us from Geneva?

Tom: Yes! I’m speaking to you from Geneva, where I work for The World Health Organisation in the Department of Violence, Injury Prevention, and Disability.

Trish: You’re going to be talking to us today about issues relating to disability, and you’re doing some work at the moment, aren’t you?

Tom:That’s right. The work that we’ve done at the WHO recently, we launched the world report on disability last year, which was the major report that looks at disability worldwide and makes recommendations for governments to improve the lives of disabled people in line with the Convention on the Rights of Persons with Disabilities. So, it was a major endeavour to put that together, and since then we’ve been doing a range of other activities.
the moment, I’m working on a statement on involuntary sterilisation, which is obviously not relevant just to disabled people, but also to women from minority communities like Roma, and also women with HIV. We’re also doing curriculum guidelines so that health professionals can be taught better about disability and human rights. My colleagues are doing a Model Disability Survey so that countries can improve their data on disability, and they’re also doing guidelines on rehabilitation. So, a lot of things going on.

Trish: So, where in the world is enforced sterilisation still occurring?

Tom: Oh, well, it’s a global problem. There’s been various cases in Australia. There’s worries about what happens in New Zealand. In terms of Roma people, that would be Slovakia and Czech Republic. There’s been issues with Indigenous women in South America but also women with HIV in Chile. There’s been issues with women with HIV in Namibia, South Africa, Kenya, and other southern African countries.

And I think for disabled people, particularly with women with intellectual disabilities, I think it’s a global issue. Even when laws state that you cannot be sterilised without consent, there are ways around it. People are persuaded, or technique is used to as it were for menstrual management, so sexually active or troubled young women with their intellectual disabilities are sterilised without their consent because it’s felt to make lives easier as it were. But this is permanent, irreversible operation, obviously. It’s very distressing for people discover they have been sterilised without having any say in it, and we need to have more understanding and clearer procedures based on human rights.

Trish: Are people’s attitudes towards that changing?

Tom: I think there is more awareness, yes. There’s more awareness, and there’s more understanding that people with disabilities are sexual beings. I think disability and sexuality are seen as totally, sort of incompatible. And, increasingly, people are understanding that disabled people are basically normal people like everybody else. They have the same needs, same desires, they do have sex, they should have sex, and we need to support them having sex. And so the work we’re doing at the WHO includes training for midwives and primary health workers, and lots of other community health workers so that they can support sexual reproductive health on people with disabilities, because of course, if you fail to do that, then people with disabilities are vulnerable to HIV and other sexually transmitted diseases. They’re not necessarily having control over their reproduction as we’ve discussed, and when it comes to pregnancy and childbirth, the outcomes again won’t be as healthy and positive as we would hope. So, we talk about all these areas of disabled people’s lives. It’s hard to say which is the most important, but sexual reproductive health is very important amongst those diverse needs.

Trish: And really, is about thinking of people with disabilities as in a holistic way, the way we do with everybody else?

Tom: That’s right. I think that you know, people would have read or talked about the difference in the medical model and the social model of disability. The medical model, the idea that disabled people are just their medical conditions And, the social model, for me, is about understanding as you say this holistic approach. To disabled people, disability is about barriers in society, it’s about attitudes, it’s about opportunities, it’s about the whole range of experiences and needs, not just the medical. It’s not to say that disabled people don’t have medical needs. Of course, they do, like everybody else, but sometimes more so. But we can’t just see those. We must see their whole multidimensional, complex nature of disability and try to help disabled people in lots of different ways. That might be occupational therapists, you know, sorting out somebody’s kitchen or bathroom. It might be, you know, speech-language therapists. It might be a social worker getting somebody supports hours so that they can have a personal assistant. It may be about somebody having equal opportunities in employment. You know, disabled people have the same needs as everybody else, and those needs are not normally met and, therefore, we need to do better to understand the complexity of those needs and make an improvement in people’s lives.

Trish: Tom, you’ve also been doing some work in self-directed packages, haven’t you?

Tom: Yeah. I’m very interested in the relationships between people and their personal assistants and, as we know, de-institutionalisation has been a big movement in Australia, in Europe, in America, and so forth. And so, as we look at the best ways to support people to live in the community, the evidence says, for those high-income countries that can afford it, that personal assistance schemes where the individual is assessed for that need, and then given the money to employ their own personal assistants, these are the most empowering. This is where you get control back over your life. This is where you get to make sure this is for yourself. And the evidence shows that this is very feasible for people with physical impairments, people with intellectual impairments in many, many cases, for older people, and indeed for children, so I think it’s a very exciting model.

What I I’m particularly interested in these days, personally, is the relations between the support worker and the disabled person, because the aetiology, if you like, of the Independent Living Movement has been about separating tasks from care, because historically people with disabilities receive care. And the trouble is that this experience is rather patronising and controlling, there’s been, you know, some downsides of care, and in reacting against that, the Independent Living Movement said: “Look! We don’t want care, we want personal assistance. We don’t want to have to feel grateful, and so forth, we don’t have to have the emotion, we can just have the tasks. Somebody does the tasks, we control them, we pay them, we’re the boss, and we’re much better off”.

Now that’s, I respect that position but, obviously, whenever you have two or more people working together, you have a relationship. I’m very interested in the nature of that support relationship. You know some people have, feminists particularly, have said: “Look! This is a return to servants. We don’t want to have a servant class!”
And remember, something like 80% of these workers are women, and many are immigrant women. There’s a potential for exploitation, we don’t want exploitation in this relationship. So, I’m very interested to see what actually goes on.

I’m hoping to do some research in my later career which looks at the friendships that develop between disabled people and their support workers and to look at the vulnerability on both sides. I mean, you could have a situation where the support worker is being exploited and abused, or indeed, you could have any situation where the disabled person is being exploited and abused. Because remember, these are basically one to one relationships, it’s not like being in an institution where there’s lots of surveillance, and everybody knows what’s going on. And that’s the strength, but it’s also the vulnerability of these new self-operating care approaches.

Trish: How easy has it been to convince governments and agencies that people can direct their own care?

Tom: I think it’s been a struggle to persuade governments that this personal assistance model is viable and can work. In Britain, the pioneering in disabled people was supported by a fund called The Independent Living Fund, and this was a way around the regulations at that time which stated that individuals couldn’t receive money directly. And the success of it, and the cost-effectiveness of it persuaded them to introduce it with the Community Care Direct Payments Act 1996.

Many people, particularly on the left of society felt that this individualised response was privatisation. Rather than local authorities employing staff with, you know, union representation and pay in recognition that was negotiated, individuals were paying staff and employing staff on a one to one level. And while it’s true that the local authority can set a minimum hourly rate to stop exploitation, it’s also true that most care workers in this area are not unionised. Trade unions and left-wing local authorities resisting what they saw as privatisation.

That has changed. Slowly people have accepted the idea. This relation seems to be a powerful theme not just in Britain but across northern Europe. And one of the reasons is that the argument is that it saves money. That's, as a disability researcher once wrote, "giving people what they say they need is cheaper than giving them what you think they need" because people have a very good idea of what they want and because people are not daft, they don't sort of want wall to wall care. I mean it's actually very obtrusive having this support worker in your life. In terms of privacy and you know, with it, you know, or certainly, when having support workers I would rather minimise the hours and just have people around when I needed them because I wanted my privacy, I want to get on with it.

Trish: And it's certainly in your interest to probably have less if you don't need them.

Tom:Yeah. In that respect, in terms of having, getting on and having a normal life. And I think is that in Europe at the moment with a global financial crisis there's a lot of pressure on budgets, and this area of expenditure looks vulnerable. And so, in Britain, there have been local authorities which have tried to cap the amount of support that individuals will get with the idea that if it goes over a certain amount, that then they will be re-institutionalised. It's also in, I think the Netherlands that their very successful schemes, that personal budgets have also been capped. So, you know when it gets tough financially, this is a vulnerable budget because it looks large, and it looks optional.
The disabled people say: "This is the funding, this is the arrangement that allows us to go to work, to earn our living, to pay our taxes" and; therefore, it's a false economy. Because of institutionalised care, the bottom line is it costs far more than care in the community.

Trish: We're feeling the financial crunch here in Queensland, the National Insurance Scheme, we're the one state that's not entering into that at the moment.

Tom: I mean, it's not criticising individual politicians, WHO doesn't do that. But I, you know, to ask the National Disability Income, National Disability Scheme seems like a good development, and it brings Australia into line with other countries which are ensuring that people with disabilities have good standards of social protection and can participate. So, obviously, we look with hope, because this was one of the recommendations of the World Report on Disability, to provide appropriate social protection, to provide empowering social care in a community. So, we hope that the sums do add up. Australia is, you know, a comparatively wealthy country which has suffered far less from the global financial crisis than, for example, European countries. So, you know, we hope that political leaders see the benefits of this scheme and that it goes ahead.

Trish: Now governments have different interpretations of what self-direction means in terms of self-managed funds, whether they are indeed self-managed, or simply a greater say for people who are in receipt of packages.

Tom:I think that you know, it's about people having control over their lives. Now you know the latter that where government or local government comes in is assessment. You know, assessment obviously should be wherever possible participative, people with disability should be involved, of course. But at the end of the day the government has to budget and ration and distribute funds equally and fairly, and so it's for them to assess people's needs and to make the, to set the quantum of support.
But it seems to me that the whole point of it is that after that point the expert on your own life is the disabled person, they're the ones that know what they need, what they can do, and what their options are and; therefore, it should be, you know, their say, and indeed, you know, if people, workers are coming into their household, they're the ones who have to live with them, they're the ones who have to be bathed, or fed, or driven around the country by the worker; therefore, they should be the ones who say who should be employed, they should be the ones who say how things should be done.

So, you know, I think you don't want fake personalisation. You want real personal assistance, direct payments where disabled people are supported? Yes of course! To manage their funds and to employ their people. In Norway, the actual employer is not the disabled person, the disabled person is the manager. Whereas in Britain, the disabled person both employs and manages their worker. So, there are distinctions there, but in both Norway and Britain it's the disabled person who's in control, and I think that's the litmus test whether you got true empowering personalisation.

Trish: Tom, I'm interested to hear how the Convention on the Rights of People with Disabilities came about. Because I understand there was extensive consultation that actually has come from the community.

Tom: The Convention on the Rights of Persons with Disabilities is indeed unusual because of the extent of civil society involvement. With previous conventions, I think I'm right in saying that The Convention on the Rights of the Child, Convention on the Ending All Forms of Discrimination Against Women, these were largely negotiated by governments, whereas the civil society was very, very involved with the negotiation of the Convention including, you know, some very prominent Australians who were at that table.

And those discussions, negotiations continued as these things do for many months until we get the Convention that we see today. I mean, the good aspect of that is that it has buy in, this is a convention which reflects the aspirations and views of all disabled people. You could say that some of the, you know, there's always horse-trading, all of these things are political, aren't they? So the, actually you end up (inaudible) represents the horse-trading between civil society groups and governments as to what is the acceptable and so, you know, there are of course that pressure which are clearer than others, but overall it's a really, really important treaty.

The first human rights treaty of the 21st century, it's been signed by well over a hundred, sorry, ratified by well over 100 countries, signed by well over 150. And we're, you know, we’re moving towards, you know, the vast majority of the world's governments accepting that this is the human rights standard we should apply. And, you know, it gives us a good basis for being treated equally, it doesn't give the same people new rights. It extends the disabled people the same rights that everybody else already has, and underscores the obligation of states to do things about it whether that's access to help or attitude or change, or article 12 which is about people having the rights of choice. You know, taken for granted by the people but a very, very important for disabled people.

Trish: It's a huge step forward.

Tom: I think so. And we also have mechanisms, so the Committee on the Rights of Persons with Disabilities meets twice a year in Geneva and governments have to report to it. So, one by one the governments that have ratified the Convention have to account for what they've done to implement the Convention. And this is a process people take very seriously, and it holds them to account, and it will drive further change. So, I think that's a good process. There's also the Conference of State Parties which is meeting in New York in September, which is a form to come together and share best practice and so forth. And it's this process, this CRPD process, to which the World Report on Disability is directed and to which it makes a contribution, because the 50 articles of the Convention are a sort of a map, you know, they say what we want. Whereas the World Report actually is a set of directions, it shows what works and how we can get to the state of affairs with the Convention mandates. So, governments will find it very useful in working out what works best, to read the world reports, and indeed that was launched in Canberra as well as in New York in the other couple of cities of the world.

Trish: So, what are the hot issues who wanted a better expression in that report?

Tom:In terms of the World Report on Disability, I don't know if you can call it a hot issue, because that would imply controversy. I think there's consensus.
I like the need for better data. The World Report on Disability talks about a billion disabled people in the world, 15% of the world's population. Those figures derive from a World Health Survey of Food Donations. But many countries, particularly low, middle-income countries, don't have good data.

It's difficult to agree what disability is, how to measure it, how to define it. So, we need to have consistent data which can be compared. And I think, secondly, access to the mainstream is one of the main recommendations. And if you look at things like health, and employment, and transport, and other areas of society, there's a real need to do more to ensure that disabled people can access them.

In healthcare, for example, we found that disabled people are twice as likely to find healthcare provider skills or equipment inadequate to meet their needs, three times as likely to be denied care, four times as likely to be treated badly. So real needs to improve coverage health care improve people's experience out there. And thirdly, I think this issue of rehabilitation. Rehabilitation is crucial for children born with cerebral palsy or other disability, or people who become disabled through road traffic injury, or stroke, or other crises, traumatic causes or indeed non-dramatic causes. Rehabilitation puts them back on the path to a good life. Without rehabilitation, without therapies, without assistive technology people are dependent, they're stuck at home, they can't go to school, they can't go to work, they're a burden on their families.

So, rehabilitation is really, really important. It's not an option, it's absolutely essential to disabled people's aspirations and, of course, you know that disabled people's living hasn't necessarily made a big thing in rehabilitation. Because rehabilitation is hard work, it's not always fun, and people preferred to put it behind them. But for those who can't get access to it, it's absolutely a block to their further progress.

And if you look in, you know, low, middle-income countries, if you look in sub-Saharan Africa, there's huge problems of getting access to rehabilitation, just of getting real chance, only 5 to 15% of the world's, of the population have access to the assistive devices they need. And, of course, without an appropriate wheelchair, you know, you're really stuck, without a hearing aid you're stuck, without a prosthetic or orthotic you're stuck. And so, we really need to prioritise that and solve that.
And I'm afraid this also happens in Australia, you know, in rural Australia with the size of the nation if you are that far away from, how are you going to get speech-language therapy? How are you going to get physiotherapy if you're right back in the country? If you're in a remote Aboriginal community or whatever? So, we really got to understand and improve provision of rehabilitation in high-income and low-income countries.

Trish: And rehabilitation is an area where people with disabilities should be leading their programs as well, shouldn't they?

Tom: Certainly. To have a partnership, you know. We need to have a partnership between the therapists and the person with disabilities. We need to have participation because, you know, just in the area of assistive devices, if you give somebody that wheelchair or whatever it is, a hearing aid or a gadget for their home, a large proportion of the time these are abandoned, the resource and leaves the disabled person no better off. And the reason they're abandoned is because the disabled person hasn't been fully involved in the negotiation and the prescription of that piece of care.

Trish: Because it also has to fit in with people's lives and what they do.

Tom: Exactly. And so, we've got to hear from disabled people, we've got to hear from them about how they want to live their lives in order to enable them to do that more successfully, and that requires participation. You know, of course, it would be great if they were more disabled professionals themselves but, you know, nond-isabled people have an absolutely vital role to play, but they need to listen to disabled people who are the best experts on their own lives.

Trish: Tom, final words for people working in the disability field?

Tom: I would say that we need to work together. That, as I said, we need people with disabilities to work alongside non-disabled people. We need the expertise, the passion, and commitment of non-disabled social workers, and therapists, and doctors, and bus drivers. And all the rest of it. We can't do it without you. I mean there's an individualism somewhere, sometimes in the disability field, you know, "I can do it on my own". Well, we're all interdependent whether we're disabled or not. So, let's do it together, but let's remember that slogan "nothing about us, without us". If you're providing or prescribing or whatever else it might be without listening to disabled people, then you're missing a lot of what will make your outcomes better. So please, let's have that conversation, and let's work together to make it a more inclusive world.

Trish: And perhaps remember we all have a disability at some point in our lives?

Tom: We all age, we're an ageing society, and the older we get, the more likely we are to be disabled, so you're absolutely right. This is not something which is the experience of a minority. It's something to which we're all vulnerable.

Trish: Tom, thank you so much. We really appreciate you giving time to speak to us on Podsocs. so thank you!

Tom: No problem. And good luck with Podsocs.

Trish: Thank you, Tom!

[Musical intro 25.50 to END]

Interview ENDS: 25.59