Welcome to ERA – Academy of European Law

Thank you Gauthier. So, in short I’m a bureaucrat, but that’s nice because today I speak in a seminar addressed to civil servants and I shall say so: dear colleagues. It’s obviously important to say from the outset that yes, I will speak from my own professional perspective. Since 30 years I’m working for the government, (many governments?) as Gauthier said, making, drafting new laws, implementing laws. That’s part of our business, our stuff obviously, that is what we are paid for, and I think that when they, I have been asked here to speak about the challenge for us for people with (), it’s the UNCRPD, I found very interesting to speak just after Theresia really, because it’s just really the challenge we face. We need to implement the UNCRPD. How can we having read to the purpose to the challenge in the face, how can we really be able to translate that in our own domestic legal system in Belgium, in UK, in France, in Germany, in Poland, because we know that our legal systems are also very different. That’s the point I would like to address with you, with a very, very, I would say, because I was a bureaucrat practical perspective about the issue. So I will speak about the difference about the difference of the human rights model too and the social model, and I will try also to frame it from what we know about our legislation. I will start my talk just at the end of the talk of Theresia. She showed you where we are now with the UNCRPD. Theresia is right, we are no more speaking about a human rights treaty, we are speaking a world right treaty. It’s unprecedented everybody, and we can point to easily the black, the country which have not signed the convention. Just four or five, Afghanistan, for example. But at the end of the day, the convention is part of the legislation everywhere in the world. It is a standard which applies to any country, and more importantly, because we are here in Trier in the European Academy, it’s part of the EU legal system, since the EU has ratified, as a whole, the convention. So when we are speaking about here the United Nations convention, we are now speaking about EU law, and we are implementing the convention implies also implementing EU law for a big part of it, obviously.

So, what has happened in the last year was quite amazing. I spoke this morning with Theresia. The level of awareness about the UNCRPD was very high. Everybody, every government is speaking about the UNCRPD, and obviously we saw a lot of very nice events about signing the convention. But what’s really the real challenge we are facing now? I think that somebody, as Don McKay pointed it recently, as Theresia mentioned he was the former Chair of the Negotiations on the Convention on the Rights of Persons with Disabilities, he is ambassador of New Zealand, I think Theresia, it’s fair to say he played a very important role in the adoption of the negotiation. He said a couple of months ago “Well, it’s risky. Why? Because we can become victim of its own success”. The easy job was to sign it, to ratify it. Now we are facing the challenge, the hard work which is: how should we now implement effectively the convention in our national legislation? So that’s my talk.

Let’s talk about the hard work. Hard work, yes, for law makers, we are making legislation. The hard work involves mainly, but not only, it is important to mention it from the outset, will involve making law. You see from article 4 of the convention that it is even more than making law. It´s an obligation, the idea is that the convention, it requires explicitly from the member state to take specific legislative steps, and in in many cases, if you read the convention, many articles will speak about the idea that there will be legal authorities which will be mandatory in our legislation and so on. If you combine article four, the specific duty to take appropriate measures, including legislation, to implement the convention, and article 33, about reporting process, you see that at the end of the day, the first challenge we face as policy makers in the member states is to make a comprehensive review of our legal framework. We need to take on the one hand the convention, and on the other hand our domestic statutes and find a kind of “do they match”. But that´s challenging because it implies some big exercise about law making, law review. So my point is, well, what are the key elements we should take as policy makers and legislation, we should take into account, to formulate, adapt and implement laws which are intended to promote the rights of people with disabilities in the manner which is consistent with the convention, and then a lot of things I will say, I think, will do echo to what Theresia said. I think that the most important thing at the end of the day if we want to implement the convention is to be very clear about the principle and assumption which underlies the convention. A lot of law that we have is seems, or can be seem if you read it from just the simple reading, in conformity of the UNCRPD statute. But, as Andrew Burns who is professor of human rights in Australia and also an expert in Geneva in the drafting of the convention said: “that’s not the case”. Very few laws in the world actually reflect, not only the UNCRPD language, but very few at the end of the day are really consistent with the convention. Why? I think that to explain why, I think that I just would like to say to, to remind us something what is important when we are making law. We know obviously that law making is not a simple exercise because we want to translate in a text a policy intention. We want to make laws to be sure that we, they produce effects in the life of the people. So, one of the things I wanted to address in my talk is just maybe before to talk about the UNCRPD, to depart from a basic principle that you would find in a very good book about law-making. Not this one, but this one. Which is a seminal book that a lot of lawyers, many in the UK know this book: How to do Things with Rules from William Twining. It’s quite interesting because it applies very well about what is the difficulty in the exercise we face with the UN convention. What Twining said is that his book is quite simple “If we want to make good laws then we have to be sure of its interpretation”. That’s the basic principle, that’s the basic challenge. When we want to, when we make law we have in mind very practical aims. We don’t want to only leave a written message, it has been written. We want to be sure that it will be applied in accordance with our meaning. And it has to be interpreted, and what Twining said, and it’s quite interesting when we see what has occurred when we have implemented anti-discrimination law at EU-level, you want to be sure that the people who will read your statute will understand the meaning of it and mainly if you are introducing law beware that the new law which will be interpreted, not with the definition of what is said but with what exists in your own domestic countries. And, that’s I think one of the main challenges we face with the UNCRPD. Theresia said it: it’s a new meaning of disability. OK it’s a new meaning of disability, but what is the danger, this new meaning of disability will be interpreted in your own state by people who have another meaning of disability, because this other meaning of disability existed already in your domestic statutes. So when we speak about the social and medical model, what’s the trouble? The trouble would be obviously that the UNCRPD is to be interpreted by people who have a medical model in mind. So one of the main lessons we can draw from Twining and his book is: we have to be, you have to be very explicit, that when you are introducing a law based on the UNCRPD, you come with very different principles of what they exist. So you have also to explain not only the principle of the UNCRPD, but also the principle of your existing framework, in order to compare what is the mismatch between them. And that’s a little bit the thing I would like to address today, but what is really new? You said it; I just want to repeat it. What is really new in the UNCRPD, for people like me, I’m in the disability policy (). When I read the convention, when I hear Theresia, what is really new? Well, we said OK, it`s a paradigm shift. That´s nice. We said well, in the previous model, people with disabilities were treated as objects and now they are subjects, they are able to claim their rights, they are making decisions for their own life. Can we make this statement more explicit when we are drafting legislation, because it’s, but we need to make it more explicit to be sure, obviously, that it’s not loose words, that we are aiming practical consequences in the way our services and society are constructed for the people, and what I would like to suggest is, that when we talk about paradigm shift, when we talk about a new way of thinking. Paradigm is a total new way of thinking, your assumptions, your beliefs, are totally changed. We need to be maybe more practical in the way we are defining the shift. So my own here contention is: well, there can be an easy way to assess our regulation and our statutes and function of the UNCRPD if, and I admit, that’s my own contention, if we keep in mind those five assumptions, that I would say are in the UNCRPD, but are antagonistic with the assumption you would find in your disability policy in your member state. The five assumptions, there are many obviously, but the five I would say which are the most provocative for our legal systems are the following:

• Disability is a human rights issue. You said it, I repeat it. That’s something totally different.
• Disability is a social construct
• Equality is not something you believe
• Human rights, it’s about an equal power relation
• And the last one, and maybe the most important, and the most provocative is: processes are as much important as outcome.

I would now like to talk about these five assumptions with you, just to try to confront, they are not the ones we have been working so far.

The first one: not a lot to add to what Theresia said. Disability is a human rights issue. Why is it new? It’s new because obviously you see this photo. I think it’s maybe a photo in the report of your of your organization lever. It’s a photo which has been talking about in mental care institutions elsewhere in Europe. Those problems we face, in the past were never seen really as a human rights issue. They were seen mostly as a healthcare of a social care problem. I remember when I was working in the Commission, when the candidate countries had to apply to be part of the EU; they had to comply with what we called the acquis communautaire. They had to comply with the community law as it existed. They had to comply, for example, with human rights. That point was never seen as a compliance point because it was not seen as a human rights issue. Theresia mentioned it in her landmark study she did in 2002. What was the big lesson is: so far the human rights body had paid little attention to disability. Disability was seen as a healthcare/social protection issue and not as a human rights perspective. And although you made the evidence in the report with Gerard Quinn that the human rights treaties, the mainstream human rights treaties do apply without any problem to them, it was not the case, because it was not seen as a human rights issue obviously from the human rights body, but you see it was not seen or saw from the people involved in the disability sector as a human rights issue. [The training was totally different]. So that’s something new, because now, and we see evidence Theresia mentioned: we see evidence now with the UNCRPD, more and more we see that the human rights bodies, disability is mainstream in the human rights approach. But why is it important? I would like to show you this very interesting difference between a human rights approach and what I would call a social care approach. When we speak about disability in a European member state, we speak often of, about special needs. We speak about the special needs of the people, the special issue and so on. We don’t speak, I don’t think, about special rights, when we talk about human rights. Why? Because, you see, what is quite different and maybe that is something which I would say Theresia, that’s also a very big difference with the social model: when we are speaking about human rights, we are speaking about things which apply to everybody, and not to specific target groups. When we are speaking, for example in anti-discrimination legislation, we are speaking for example about grounds, race, religion and so on. Human rights are, at the end of the day the issue of defining the target group is not relevant I would say, because if you say you have to define it, you would assume that there are some disabled people who are not human, and that’s really, I think a huge shift in our philosophy: needs are assessed, and you know that in our domestic legislation needs assessment is a basic principle of our system, needs are assessed not by the professional but by the family, so that’s a total shift. Needs can be ranked a priori in a hierarchy. You know in the fiscal constraint we are facing in our member states, you can diminish the budget and the needs. Rights are absolutely not, or could not be ranked from a perspective of financial issues, and rights are, as I said, have to be realized, they are inherent to every human being. So that’s a huge difference. We have not a legal system on disability issues which is based on those premises so far, and one of the very important things obviously with the human rights approach is the dynamic. In a human rights approach, every human being is a right holder. When we speak of duty, we speak about accessibility, we do not mean, as accessibility is a human rights and we can debate about the nature, but it’s a right, and it’s a right which means that there are somebody in the society which is accountable for, if you…that was not seen in many statutes you have on accessibility. They are more seen from a technical perspective. We are speaking about a door: which centimetres should be a door? But we are not speaking about rights. So it’s a huge difference. I think that when you are speaking about rights, you are introducing three notions which you do not find in the idea of:

• Accountability: someone is accountable
• Culpability: there is a fault in the system, and
• Responsibility.

These three factors are part of a human rights approach that we do not find in our system. So, if we say-OK, Theresia mentioned it- people with disabilities can access on an inclusive education, equal to others, what do we mean? I think that we are in the debate surrounding special education, we are saying something new. We are not saying, we are moving the debate on inclusive education from a debate among professionals, we are moving the debate saying that if a disabled child has not access to an inclusive education, it’s that there is a fault in the education system, and so we are addressing and we are putting in question the education system.

Second assumption: Disability is a social construct. I like the idea where it’s phrased here, it’s coming from an association of autistic people when they are saying “Autism is not a tragedy. Ignorance is the tragedy”. I think it’s a nice way to resume a little bit the contention of the idea that when we are speaking about a disability, we are no longer, I think in the view of the convention, speaking about people. We are speaking about a process. The process of disablement, which means clearly that what we are trying to understand, is, as you see from the preamble and the notion of the disability as it is enshrined in the convention that we are speaking about the dynamic. Not the people, but a dynamic which excludes people presenting certain characteristics and the environment where () it is construct, and we assume that the disablement itself, it’s the product of the system. It’s something where it’s quite different obviously from what we call, and Theresia mentioned it, the medical model. We depart of the idea that if someone cannot access to the school, it’s because he has an impairment. We say “no, it’s because the school is defective” not the person. So, you see, we are moving from that traditional view. I think that the main challenge we are facing when we have to implement that new model in our system, it’s because you do not find obviously, in your domestic legislation, something called the medical model. There is nothing to do with medicine. What we would find, if we need to implement the, this new definition of disability in our system, you would find some conflict with the way we have, the way you would see your domestic statutes. I just would like to give you a model which is quite interesting, that’s the middle age view of disability, where we have in our history always linked disability with poverty. That’s the history of the social care, where at the end of the day, many of the statutes, we would find in our domestic legislation are still based on the idea that people with disabilities are poor, and poor people should be helped and cared for their own sake. But then we have also with the industrial revolution a lot of things in the disability policy which has a very big link with the industrial revolution, with the birth of the social security. We have a lot of statutes or so to do with war, when we saw already a lot of pieces of legislation wanting to compensate the needs of the, some people who have been war veterans and so on, which obviously plays a very important role in the history of disability policy. Why? Because, for example, the war compensation benefit or so, introduced a shift in our thinking about disability. Why? Because then our society was, because those people became disabled of invalid for the country, for the land. They needed to be, to have a reparation. So the idea that the society was guilty and had a duty was built already in that system. But you saw obviously the link and it gave also the explanation if you look to our social security scheme, why, to some extent you have different social security schemes and why obviously the origin of disability is more important sometimes than the disability itself. But you need to take into account that our system has been built in that historical framework, and obviously we have the disability movement. If I have your photo Theresia, next time I will put your photo of your tribunal in 1981. But that’s something different. These people are not war veterans. Disability activists are coming from a totally different insight in the legislative framework. If you want to translate those periods in legal statutes, I just give you three examples. The disability definitions are really reflecting the period and the approach and the purpose of where they have been built. The first one is maybe the oldest definition that you would find in the Poor Law. The disabled include the sick, insane, defective, aged and infirm. It was quite amazing to see at that time that the idea was, there were too much vagrants, and the idea was to make a difference between the deserving vagrants and the not deserving vagrants, and sometimes I suspect that the discussions we have about who are the true disabled, who are the not disabled, are still the continuing debate about who are the good disabled and the wrong disabled. But you see that it really, it finds its origin deeply in the construction of the social care model. And then, we are in Germany, but you know, the birth of social security, the definition you have and the definition you would find in a lot of social statutes is to do with the purpose and the need to define, to provide an income support for the workers who become disabled. And the last one is really amazing, because that’s the Canadian one about the Employment Equality Act, and what is quite striking when you read it, this definition, is that at the end of the day, the definition is quite subjective because it’s the people who think who are disabled who are coming into consideration for the () Just to highlight the point that, beware. Those statutes are coming from different models and different perspectives, and you do not have to confuse them. The difficulty we face in our domestic legislation is those statutes are still there. We are not facing in our disability policy something coherent. It’s a kind of, what I call the lasagne effect. When we speak about capacity law, this has nothing to do with the definition we would find in social security legislation, in labour law, in social care. So beware, beware that when we are introducing a human rights approach, we do not refer to the system the idea that those systems are not relevant. As you mentioned it: that’s not the point. The point is that we are addressing and coming from a different perspective, because obviously the human rights approach applies to labour law and social care and so on, but we are coming, when we think about disability, we are coming with a total different perspective, and that’s my point because when we see all the debate around the implementation of the reasonable accommodation, who is disabled or not, people are wrong, because they are thinking still, and they are based on those pieces of legislation which are not relevant. So we are implementing a new paradigm, and a new law about a new paradigm shift. You have to know your paradigm, you have to understand that a competing paradigm is not the same as you accepted it and the last one is that (). So a new definition of disability, a new meaning, but that’s maybe the most challenging, but this one is really challenging, I mean I said a lot about that because Theresia spoke passionately about it. Equality has to be redefined. Why? Obviously because we are moving from the traditional view of equality and as Anatole de France said, which is most interesting quotation about equality. “The law in its majestic equality forbids the rich and the poor alike to sleep under the bridge” and the law with its majestic equality does not find that it was a problem for people with disabilities to get access to the stairs because the stairs are there for everybody. So what we are introducing with the convention, but also is the case in non-discrimination is that equality has to be redefined and you need to move to substantive equality. I think this quotation of Anatole de France is quite interesting, because you know, there is a big debate in some countries about the rights of heterosexuals and homosexuals and I think it would be interesting to say that heterosexuals are forbidden because it’s the same rule. Everybody is forbidden to marry a person of the same sex. It’s a joke but I think it is interesting because then we understand where we are moving from, equality and formal equality. What is quite important is that, if we take our view that disability is a social construct, first consequence that disability and from the human right, it’s an infringement to human rights, and obviously, clearly, that’s why the issue of reasonable accommodation is not something technical, it’s something where the convention says really, we need equality, has another meaning than what we think. And then obviously, when we speak about it, it’s not only reasonable accommodation, I think this fascinating article, article 12 is also something where we move from the idea, equality does not mean that we, to forbid, but to support. And that’s something very different from the perspective where we have built our system. And as you said, Theresia, accessibility provides us with something more now than reasonable accommodation. It’s different but it’s the same point you made. What I would like to say is quite important when we are addressing equality, it’s not something, it’s in fact, if the purpose is changing the society, if it’s changing the social construct we can not only rely on reasonable accommodation which is reactive, we want to be proactive and change the society for all. And the message is quite important because it’s linked to the human rights approach. It’s the idea that we are not making that for specific people, we are making that for everybody. If we accommodate the () we know that the effects are more important for disabled people. It’s for elderly people, it’s for myself when I’m driving my, you see my stuff to go shopping and so on, accessibility plays a role for everyone, and you know, there’s something quite interesting when you look to accessibility, not only physical, but also when we address the immaterial schools of the way the society is constructed. When we speak for example for accessibility in the work environment, the evidence shows that the most important issue we need to address in the work environment is not the buildings, but the way the job is to be made. Flexible assignation of staff. 80, 90% of the accommodations are on that stuff, but the funny things is: when we look to which are the best enterprises in the world for people with disabilities, they are not doings something for people with disabilities. That’s very strange. What they are doing is something for their whole workforce. They are adapting the task to each of their workers, because each worker is unique, and they are adapting, they are making flexible work schedule because everybody needs it. So I think that’s the issue about accessibility: we move to something which is quite universal, and that is something I would like you to think about from a legislative point of view, because if you think specific you would be wrong as far as implementing equality. Equality, and I think it is quite important or so in the convention, if you read the article on inclusive education, of 19, equality means something else than the idea of separate, separate is not equal. It’s also something which we are not, which is conflictual when we see our system, but it’s quite important also to see the dimension equality. More importantly, equality, dignity, are the principles which make at the end of the day the debate is about choice.

OK, the next assumption is: unequal power relations lies at the cause of the exclusion of persons with disabilities. That’s a very big point I think about the UNCRPD. It’s not about, we would be wrong if we think, and I see some debate about that, we have to put more money in the system. I think the real issue when you are speaking about rights, and that’s what the disability activists are saying: it’s not about money, about how much we spend, but who decides that, and if you read the convention and the human rights model, I think that, and when Theresia spoke about development, a lot of things we see in the convention are based on a model of human rights which assume, and I think it’s quite important for us that, at the end of the day, if people have a poor outcome, it’s because they have no say. So it’s not about redistribution. It’s about participation and representation, and the idea that most of the things we need to do about the convention is about how, as an empowerment idea for people with disabilities is quite strong. I think that the UNCRPD should be seen as an agenda of empowerment for disabilities, and it contrasts obviously with our paternalist tradition of addressing the people for them, and not the idea itself that, if we want people really to be autonomous, they should not be dependent. We have to pay in all the, in in implementing the convention a lot about inclusion, access to information, accountability and organisational capacity.

And that’s maybe a link to the last assumption, which is quite important I think if you read the convention: processes are as much important as outcome. If the real idea is people should have a say and decide for themselves, the point is not the result. The point is who decides for them. It’s maybe a link to the question we had from this lady: “what’s the point?”, and at the end of the day, the outcome should be most important, but at the end of the day, how and who decides is important, and if you look to this very nice picture “process is more important than outcome”, it says something more. It says “when we are outcome, when outcome drives process, we know where we will go, but when the process drives the outcome, we don’t know where we will go, but we know that we want to be there”. So I think that is quite, when we talk about disability, and the convention as an evolving process, it’s fine to see that, and I don’t know if this proverb exists in German: that the way is more important than the destination. Yes, it exists? OK. So that’s my fifth assumption. And the conclusion I draw from that is: if I have to ask you if you want to address the implementation of the convention, there is maybe something simple, we can only look to a statute. Thus, the statute enables chosen participation for persons with disabilities. It’s quite a simple question, but read every statute thus. Does, if it’s empowerment, does it have an, is accountability built in that statute, can you be able to assert, as duty bearers fulfilling their obligation, and people with disabilities are indebted to the (). Just making these five assumptions will be, in my view, quite challenging for most of our statutes. So, I think that I come to an end of my talk. And just one more thing, which, because I thought I was not practical enough, I have been a little bit theoretical in my talk. OK, how do we start? Well, but you know the answer. How do we eat an elephant? Well the answer is simple: one piece at a time. So I think if you read my, article 33 which will talk this afternoon, is the best beginning to start the process, because it is about participation and accountability. Be sure before you begin, that your framework is consistent with the convention.
Thank you.