Vems val 06, Podcast om FN konventionen om rättigheter för personer med funktionsnedsättning med Stig Langvad

Stig Langvad från Danmark har varit medlem i CRPD-kommittén och var ordförande för arbetsgruppen för artikel 19 i Konvention om rättigheter för personer med funktionsnedsättning och för den allmänna kommentaren om artikel 19. Nu är han styrelseledamot i Danmarks institut för mänskliga rättigheter.

Podden spelades in på engelska.

Ola Linder, Jamie bolling och Stig Langvad

Vems Val podcast logotypVems val? Podden om funktionshinder, mänskliga rättigheter och självbestämmande. Detta är avsnitt nr. 06.

Ladda ner ljudfil (116 minuter, 50 MB, mp3)

Ola:
Welcome to Whose Choice, the podcast about human rights, disability and self-determination. It is produced by the project Article 19 as a tool, funded by the Swedish inheritance fund. We (the project) aim to deepen the understanding of the United Nations Convention on the Rights of Persons with Disabilities (CRPD; the Convention) and we also monitor the rights implementation in Sweden at the moment. We look specifically at institutionalization and community living. Today we’re very glad to have the podcast in English because we have a very important guest with us. His name is Stig Langvad from Denmark. He has extensive experience in disability rights advocacy and has been a member of the CRPD Committee. Now he is a board member of the Danish Institute for Human Rights.My name is Ola Linder and with us today we also have Jamie Bolling, the director of the Independent Living Institute. So to begin Stig, can you tell us a little bit about yourself and your background?Stig Langvad:
I can do that. I’m 63 at the moment. I had a spinal cord injury as the consequence of a traffic accident in 1973. I have been in the disability movement for, I don’t know how long, 35 years 40 years. I’ve been chairperson of DPOD, which is the Disabled Peoples’ Organizations Denmark, the umbrella organization. And today I am project coordinating in the association of persons with physical disability.And of course, I’ve been a member of the (CRPD) committee for eight years from 2010 to 2018. And actually I was chairperson of the working group on article 19, and on the general comment on Article 19 (add link).Ola:
I didn’t know that you worked on the general comment and that you chaired that working group. That is a really interesting document that you produced in the end. We use it a lot in our work, the general comment.Stig Langvad:
I’m happy, because if we look at Denmark, they are usually not using the general comments and I think it is quite relevant because it unfolds the small part of the article and makes it much more workable and much more concrete and has a lot of information on how things could be done or what to consider.

Ola:
We know that most people in Sweden and the decision-makers are not using the general comment as much as we would like to. That’s why we have this drive with the project, to really try to find better ways to use the content because it is quite operational. Don’t you think?

Stig Langvad:
Yes. I think it is living up to many of the standards of the Scandinavian countries as well as of course providing information for Uganda. It really goes into the essence of Independent Living in a Scandinavian country.

Ola:
And when you say that it can be useful in Scandinavia and elsewhere. Do you see that there are many differences in the implementation so far?

Stig Langvad:
In Scandinavia, I think that we are almost on track. I think we are following the same direction, the same development. Sometimes Finland is a little bit behind, sometimes Finland is perhaps moving ahead. But overall I think that the Scandinavian countries are moving in the same direction. Or rather some of them are moving backwards, but probably the same is happening across the Scandinavian countries. But if you go to Uganda it is a much more complicated situation. They don’t have many institutions. People with disabilities are not as visible as they are in Scandinavia and so forth, but I do think that the right to be living independently within your community is as essential to Sweden as it is to Uganda.

Ola:
Indeed, it is a universal right. The right to independent living and community living as enshrined in the UN Convention as part of the convention text. Is that something you’ve met in your work? Some people say that the convention is the legally binding document but the general comment isn’t. What do you have to say to that?

Stig Langvad:
I think it’s a part of the same because from my perception the CRPD is legally binding if you have ratified it. The general comment is based on the jurisprudence of the committee based on human rights based on a lot of different sources and adding to the understanding of the article. It is not enlarging the article, or the consequences of the article. It is merely indicating what to live up to to fulfil the rights in the article.

Ola:
Some things are very clear. I think in my opinion at least when I read the text that it traces back to the convention text. Some other things are sometimes a bit more to the side of things. For example, a very interesting thing is the definition of an institution.

Stig Langvad:
But there is no definition of an institution because everything can be an institution. If you are deprived of the right to decide yourself, if you are deprived of the right to mix with other people. In Denmark we have home care. The home care comes when the home care comes, perhaps at 10 or at 11 or at 9.  That is an institutional frame because you are not able to do what you want when you want and with whom you want. Then you are in an institution, even though you’re living in your own house, so it’s not about a physical arrangement and it’s not about a geographical phenomenon but it is about the ability to be included in your community in your local community.

Ola:
Yeah, and that’s the definition or those are the words that come out in the general comment. You say these things that you’re saying now, you can trace that in the general comment, that it’s not about the size of your house.

Stig Langvad:
Or the number of people you are living with or who you’re living with but more the right to choose who you want to live with and where you want to live and how you want to be active in your community.

Ola:
And I think it’s really interesting if we understand institutions in that sense, then I don’t really agree that Sweden is living up to the obligations under Article 19. Just like you’re saying many people don’t experience control over their services and can’t exercise control over their lives.

Stig Langvad:
No, I agree that in general there are many limitations on what a person can do and when he or she can do it. I think that for persons with intellectual disabilities it is not moving in the right direction because we do have group homes, we have places where people are supposed to live because they are “that kind of people”. Thereby I think that we are far away from living up to the CRPD Article 19. But having said that, I think that the situations in the Scandinavian countries are more or less similar. So that means we have common challenges in the Scandinavian countries when it comes to implementing the rights for everybody.

Ola:
Can I ask you something about how you think that should be done? That’s something we are getting closer to working more on, both on the policy level but also more on the practical side of things. Would you say that there is a need for deinstitutionalization plans in every country?

Stig Langvad:
I think there is a plan for deinstitutionalization required in all countries. And I think it is for all countries on this Earth. I think we must have a plan for breaking down the big institutions. When I talk about big institutions, I talk about institutions where more than six people live. That must be the first priority.

But even though you are living with up to six people [in a group home] you might still be living in an institution. I think that we must have a plan for making sure that you can live where you want and you can do what you want and you can do these activities with whom you want. That must be the ambition, but I think you have to take it step-by-step otherwise the government will not be able to deal with it not physically economically, but also mentally.

Jamie:
It’s interesting when you say this. I agree with everything that’s been said and when I think of the Scandinavian countries that I take Sweden or Norway where I know a little bit more. We’re finding that the institutions are growing, meaning that the number of people that are living in these group homes can be more. When you say doing things slowly to make sure the governments can keep up.

Stig Langvad:
I did not say slowly.

Jamie:
No you said..

Stig Langvad:
Step-by-step.

Jamie:
Okay, thank you. I interpreted that as slowly but step-by-step. Now the steps seem to be going in the other direction. We closed the large institutions in Sweden 20 years ago, 1 january 2000. Now we have new politicians and almost new values. People are not having the same ideas as they did when they decided to close everything. Now it seems to be “it’s cheaper if we put these people in institutions”. So how to stop this from happening?

Stig Langvad:
I think that you’re right, that we are having larger and larger institutions and I do think that even though we might have small group homes than 4, 5 or 6 small group homes are managed by the same person and the staff make it become an institution even though it’s small  So we’re not moving in the right direction, or you’re right, we are moving back. That in my view is a violation of Article 19.

Jamie:
Exactly because we’re not supposed to go backwards.

Stig Langvad:
And we should use the available resources or even substantial amount of our available resources on this deinstitutionalization. The money from the European Union is also supposed to be guaranteeing deinstitutionalization but only to a certain level unfortunately.

When I look back 25 years ago, we had a common understanding on where to go. We had a common understanding on persons with disabilities, what they require, what they need. But somehow during the last 25 years we have lost this mutual understanding. I think we have to reinvent this among politicians, among civil servants so that they really understand that this is not sufficient. To be given the ability to live in institutions or institutional setups. They don’t know I mean they are still in the situation today. They don’t see people. They don’t see people with disabilities. We are not visible on the street. We are not visible in the schools. Of course some are. I still think that we are invisible. We have to reinvent this perspective that we had 25 years ago. 30 years ago or something.

Ola:
Is the language of the UNCRPD close to that understanding or is it quite different? Do you think it would be useful to use the convention language as a basis for this new mutual understanding?

Stig Langvad:
I think that the intention, the language, that everything is in line with this perception.

But if you go to the politicians and say “according to the CRPD” then I think it is on a level where they are really not coping. They’re not really understanding you, so you have to translate it into something that they can see and relate to. You cannot just attach the CRPD to everything. I think you have to translate it to reach the minds of your politicians or your civil servants. They have ratified the convention. So they are obliged to follow the convention.

Ola:
That’s what I think is very interesting with the positive impact of ratifying a convention while at the same time finding a reluctance in following through on the promises.

Stig Langvad:
I think they are afraid that it will cost too many resources, financial resources, human resources

But I agree that when you say A you have to say B. If you ratify, you have to do something to live up to your promises.

Ola:
Otherwise, the ratification becomes fairly worthless. So it is true we have to work actively with not only saying that this is a convention obligation but rather finding other ways to … I think that’s a very interesting reflection on how we can better use the CRPD in practice. There is a campaign in Sweden that is demanding that the CRPD should be incorporated into Swedish law.

Stig Langvad:
That’s a good idea. When you incorporate it into the relevant legislation, mainstream it into all  legislation wherever it’s needed, that it becomes a part of the direct tool, the daily tool and the daily understanding. Instead of having something very fluent or fluffy like a convention “that is not really something that we should deal with” what we have seen, when it is incorporated in legislation. We can see that it makes a change.

I can give you an example in the European Union in 2000-2001. We had the non-discrimination at the workplace directive and it became law. It is to be followed by every member state of the European Union. I don’t know how it is in Sweden, but I can tell you that in Denmark it made a significant change. People are much more aware. That’s not saying that people with disabilities are employed, but they are not being sacked because of their disability anymore.

Ola:
Yes. We can I think say for sure that there has been a positive impact of the EU directives, especially in the labor market when it comes to discrimination. There are cases being brought and there’s a Swedish law that implements those directives called the discrimination act and that is being used, although not enough. We are at the Institute (ILI) working to encourage people to use the law more actively, but it is being used to a certain degree and we know that if people find the resources to litigate that it can be effective.

Stig Langvad:
Having a law on non-discrimination is probably not as strong as having each of the Articles, or the relevant articles incorporated in the specific laws regarding environment, regarding transport, regarding employment, regarding education. I think it is much more effective if it is incorporated in the specific legislation. But if you can have both that is excellent.

Ola:
I think it should be possible to do both, but I think maybe it’s my quite formal understanding of the word incorporation from a legal point of view in Sweden means to take the full convention and just put it in one single piece of legislation, whereas transposition means that you are taking the core of the rights and implementing them in the laws that are guaranteeing say education or something.

Stig Langvad:
Yes, and we are talking mainstreaming. If mainstreaming should have something then it must be incorporated in the specific legislation and not just in an overarching legislation. Then you’ll always be discussing “is this relevant here”,  “how to interpret it here” I think that if you incorporate it into specific legislation, then it becomes much stronger and clearer.

Note from transcriber – transposition and incorporation in EU law

Ola:
I think you’re right. That’s something we should be pushing for more also, parallel to the campaign to incorporate the convention into one single piece of legislation. Do you have any good examples that you’ve seen on doing this with specific articles?

Stig Langvad:
Not on article 19 or perhaps some part of it. Norway. I think they have a law on Independent Living, in Sweden they have it, in Finland they have it and they have it in Denmark. That is to some extent examples of ensuring at least someone will be living more independently within the local community.

When it comes to voting on Democratic rights. I can see that the law on voting had the wording changed because of the CRPD. So I see things happening, but things are happening very slowly and as Jamie said before things are moving backwards and in reality, even though that we sometimes get our rights, but in less privileged circumstances.

Jamie:
When you refer to countries and independent living legislation you mean legislation that allows for personal assistance?

Stig Langvad:
Yes.

Jamie:
There are other countries as well, but that is one really main thing, that many of us without personal assistants, you wouldn’t be accessing your rights because you wouldn’t get very far in this society. So it is very important.

Stig Langvad:
Then it didn’t it would be just like John Callahan. Don’t Worry, He Won’t Get Far on Foot.

Ola:
The definition of personal assistance that is given in the general comment is really interesting. Even though we have these laws in Sweden regulating that you can sometimes have the right to personal assistants. It is not as generous as the Article 19 under the CRPD requires states to provide.

Stig Langvad:
Today I think that persons with physical impairments are better off than the rest in having the ability to choose who they want to be assisted by and when they want to be assisted. But then again if we look to Jamie, she’s not depending that heavily on personal assistance as I am and and thereby she’s being discriminated against to a much larger than I am because she can only go out with her family or occasionally with others. So I think that we should be more focused on explaining that there are many that are suffering from not having the ability to participate in your society. And I think that article 19 is not so much about where you live but much more on how you live and and you need to be sure that you can be included in your society, because it is an article on inclusion.

Jamie:
Full participation.

Ola:
And when it comes to participation, I think there’s also a connection to make to some other articles in the Convention and especially article 4.3 and 33.3 which is that they’re both about the participation of disabled people’s organizations in decisions and monitoring of the implementation of the convention including Article 19. What do you see as the role of DPOs (disabled people’s organisations) in monitoring and affecting the implementation of the inclusion under Article 19?

Stig Langvad:
First of all in article 4.3 it is mandatory for State parties to involve organizations representing persons with disabilities in decision-making processes, in planning, in deciding on the legislation. So they have to to live up to what the disability movement calls “nothing about us without us” because

we are the only ones that know how it is to live with disability with a specific impairment. They have to involve us in every step. When you have the legislation or when you don’t have it, then article 33.3 or article 33.2 or article 33.1 becomes relevant because that is about following the implementation or lack of implementation. So first of all article 4.3 is to get the law, get the opportunities, and article 33.3 is to monitor the implementation.

You can’t do that without involving the organizations of persons with disabilities. You cannot do this without having to listen to what we actually demand based on our experience. And organizations are not representing one person. They are representing a whole “disability sector.” I don’t like that word, but it comes good here. I mean organisations represent persons with intellectual disability or persons with psychosocial disability or persons with physical impairment or whatever. They are the common voice of the group of a specific group of persons with disabilities.

Ola:
What if the state just asks some DPOs what they think about a specific law and then that’s it. They say that they have fulfilled their obligations. Do you think that’s enough or do you need more?

Stig Langvad:
I think I need a little bit more because you cannot ask persons who are deaf or hard-of-hearing about matters relevant to persons in wheelchairs. You need to make sure that the organizations that you are involving in the decision-making process represent the persons that are the focus of initiatives.

You won’t win them all but they have to listen to what you say and they have to reflect it into the legislation. There are of course many voices and you are not as an organization elected to decide on the law. But you through article 4.3 involved in the decision-making process and thereby the civil servants and politicians should be looking to your side before they decide.

Ola:
I think this dynamic in these articles between the role of the DPOs as representatives of the people that have rights under the Convention and on the other hand the democracy in its purest or most simplistic form, that the majority rules, it is quite interesting how you try to steer democracy towards a more inclusive and actually good result for everybody. So that citizens can have their rights.

Stig Langvad:
Rights can be fulfilled in many ways. I mean you don’t need the same legislation in Sweden as they do in Uganda. But having said that, in neither Uganda nor Sweden can the right legislation be produced without listening to those that are the focus of the legislation. So it’s a right to go in a certain direction, but you don’t decide on what the law looks like but you have to have influence on the law.

And it has to ensure that your rights are fulfilled.

Ola:
And when it comes to monitoring specifically in relation to deinstitutionalization, do you think that there are any good practices out there because we are looking very hard for them.

Stig Langvad:
Honestly I haven’t seen many good results. I’ve seen a lot of challenging solutions because everyone is under institutionalization and many countries lack even what we have in Scandinavian countries. I’m always very much focused on whether or not I have the same possibilities as anyone else in Denmark. I think that I am a little bit behind still, or rather I’m far behind other people, in my freedom in my choice, in the amount of support I can get. As long as I am not diminishing the distance between me and others then I think that the solution is insufficient.

To be frank. I don’t think that I can say that this country is doing something very special because everything is institutionalized and going back to what we talked about earlier, then the

Scandinavian countries, which should be spearheading this process, are moving backwards. We are getting larger and larger institutions and we are getting more and more rules to follow, things that limit your personal autonomy.

Jamie:
When we talk about the institutions, I’m thinking that there’s a trend in the other European countries, where, in order to close the large institutions they are building small group homes. Sometimes these group homes will be for 10 persons or more and I’m so much against it because they’re too big to start off with. The group homes which were used here in Sweden in order to close the institutions, they will probably always be here. Do you think we can get away and one day be able to close even the group homes which are still institutions?

Stig Langvad:
If you built a house today, how long do you think it will be before you have to build a new one?

Hungary is building institutions, even small group homes. They will be there for the next 50, 75, 100 years and then you will have this “we-need-to-use-the-buildings-syndrome” and then the possibility to move in the right direction becomes much smaller, because we have the buildings and we need to use the buildings and then people will be living in institutions for the next 50, 75 or hundred years.

We have to be able to give people the right support and let them live to the largest possible extent by themselves, where they want to live and with whom they want to live and then we need to guarantee that they can do what they want.

I think we have to take the first step and begin to think in that direction instead of saying that institutions can be one step or stepping stones on the road to Independent Living. I think it will delay, but that is my personal opinion. You can’t find that in article 4.3, but that would be my advice to the government.

Ola:
Sometimes I get the feeling that at least local governments are covering up the fact that you need to build more housing and instead they’re saying we need to build more institutions because there is such a high demand. But if it’s really about the right to housing and the lack of available housing, then it just doesn’t make much sense to me to say we need institutions when people in fact don’t want to live there.

Stig Langvad:
Even though it is about building houses. It might also be about ensuring the ability to pay the rent. You have a lot of accessible houses on the Harborfront, but they’re too expensive.

That is also indicating something about the interdependency among the articles of the CRPD because you can be granted a lot of possibilities within your local community but if you can’t afford it then it is worthless.

If I look across to Sweden I can see that there are a lot of houses being built in the cities, in Helsingborg, Landskrona and in Malmö but they are too expensive. If persons with disabilities are unemployed then they are not sufficiently wealthy to pay the rent. So I think that

I think that sometimes it is also about having the ability to pay. Your income is too small.

Ola:
We’ve seen that in our project so far when we are in touch with different people in different parts of Sweden, the connection that people make between the right to independent living and self-determination is very much connected to the right to a decent and somewhat equal income.

That’s something we are looking at and I think it’s positive that we have a connection in the general comments, but I think it can be made even clearer in hopefully jurisprudence later on.

Can I ask you some things about the work in the committee?

I know that you were a member of the committee and I now know that you chaired the working group on article 19.

Stig Langvad:
And the general comment on 4.3 on active involvement. General comment number five and number seven.

Ola:
Those are really good, we use them. How did you like working with the committee? What were the most positive aspects?

Stig Langvad:
I think that the most positive aspects were when the committee was dealing with new frontiers, doing something new, because sometimes you just repeat yourself. I mean there are challenges for all countries and in a way they are the same challenges. You focus on the right to decide, article 12, you focus on article 9 on accessibility. Every time the committee said, “this is new, this is groundbreaking”.

I think that was part of the most interesting. I also think that the general comments were quite interesting because it was about unfolding the articles and explaining the jurisprudence. Becoming more advisory to state parties in general, instead of having limited possibilities. I mean, we had this [limited] amount of words 3000, 3600. Then you had to focus on all articles and then sometimes it became a little bit unclear what we actually thought.

I think that the general comments are an excellent platform for really saying what we think the CRPD should be about and how it should be understood. Based on our jurisprudence, based on human rights. It’s not something that we invent but we try to unfold it and make it much more clear to everyone. When we do a general comment, we have more words and then we can be much more explanatory.

Ola:
Yeah, I can see that in them. Was there something that was particularly challenging?

Stig Langvad:
In what? I’m in the work of the committee. I can tell you the story about China.

China they came, I think they were supposed to be 35 or 40 people. So they were outnumbering the committee. They wanted guards, armed guards to be present because they were afraid of being attacked. The thought of the committee was more like, we are more afraid of you than you should be of us.

I think the most challenging thing in the committee was working with article 12 (Article 12 – Equal recognition before the law) and article 14 (Article 14 – Liberty and security of the person) because it’s really difficult because there are so many feelings about that. There are so many ways to understand it. It is necessary. It is important, but it is some of the really hard stuff to deal with. I also think that the cultural differences between the members of the committee could be challenging. Sometimes we had to go many rounds to find a mutual platform on questions like a LGBT, the right to life etc.

At the end of the day, I think that the work in the committee was based on mutual understanding and I can’t remember that we did not agree at the end, or at least 17 against one or something. If we voted it was very very seldom. I think I can remember two or three or four occasions where we voted. It was quite unanimous.

Ola:
Just to clarify article 12 it’s about the right to Legal Capacity and to actually be a deciding person for your own person and article 14 is about the right to Liberty and Security of the person so that you are not being removed forcibly by somebody.

Could you say something because we have some cases in Sweden and some confusion regarding the rights because when a person is living in an apartment or somewhere but is not provided sufficient support, say personal assistance or something similar, so that you can actually go out and live your life in the community. Legally it can be challenging to claim that there’s removal of Liberty, but the effect can feel quite the same on a person that is confined to their house.

Can you reflect something on the removal of Liberty compared to the right to community living in Article 19?

Stig Langvad:
We often had this problem about having some rights but not what we actually think ourselves is necessary. I think that I know I think you have to ask a question again before I answer because somehow I’m not sure what you are asking for.

Ola:
No, it’s the quiet hard thing to define because one day on the one hand you have the right to Community Living, Independent and Community Living, which requires your choice of where and with whom to live and do what you do. Sometimes you need services that support you in exercising those rights, Article 19 B.

But then you also have the right to Liberty and security under article 14. The question is should we think about them as the same rights or why are there two separate articles?

Stig Langvad:
Article 19 is about living in the community. The other one is about arbitrary deprival of your liberty based on disability as far as I recall. Article 14 is about jail, psychiatric institutions etc. It’s about the right not to be sentenced to living in institutions for persons with psychiatric impairments, but the other one (article 19) is about the right to live independently. Everyone should be having the right to live independently and everyone should have the right not to be living in a psychiatric institution, etc.

I think that you have to read the CRPD as a mix of interdependent articles, because article 12 about the right to express yourself, to choose for yourself, to do everything, is fundamental to living in the community and the right to accessibility is also fundamental to being able to live in your community. I mean, you cannot go out if the buses are inaccessible.

And the right to political participation is of course, also a part of that because you need to be able to follow or be a part of the political process. So all of the articles are connected and they could probably have been written differently. But this is what came out of the cellar in New York in 2006.

Ola:
Yes, that must have been a quite interesting procedure. Were you part of the negotiations at the time?

Stig Langvad:
I was a part of it, especially the beginning. I participated in New York during the first two meetings and I followed it because I am a very good person. So I gave Holger Kallehauge the possibility because he was always dreaming about human rights and then this convention so I thought that this could be my gift to him. But of course we talked about it. But I think it was dominantly in the first years that it really was interesting. Because in other times, I mean in 88 and 89, when Sweden and Italy proposed the CRPD, the UN said no. This time in 2002 they said yes, not to the convention itself but to elaborate on one.

Ola:
Yes, in 2006 the final product was adopted and we’ve been working with it ever since. Was it what you were hoping for?

Stig Langvad:
I think, taking into consideration that the CRPD is told to be disability language of all rights that you have today. I think it is quite good. I mean you are putting all the rights that everyone has today in disability “language” and I think that if we see the general conventions, the one on political and civil rights and the one on economic social and cultural rights, and then on top of those we put the CRPD, then it becomes much clearer what it takes for State parties to live up to, to give persons with disabilities the same rights that everyone else has. But having said that, I still think that we have some way to go before persons with disabilities have the same rights as everyone. We know what to do.

Ola:
Would you say it’s correct to say that the CRPD is a kind of concretisation of general human rights in a disability context?

Stig Langvad:
Yes.

Ola:
That’s what I usually say when I talk about these rights to different stakeholders and rights holders. At the same time when we’re working on an equality point of view or approach. Sometimes it’s unfortunately possible to forget that you need to work with the rights for everybody. For example housing if we’re lacking housing that’s accessible for all including disabled people and their response, then would be to build institutions. Isn’t that also a discriminatory approach by the state?

Stig Langvad:
If they build institutions, physical institutions, I would say that it is against the CRPD. If you read the general comment number 5 you’ll also see that there is a claim for breaking down institutions and I think a claim for not building new ones.

Ola:
I think that’s quite clear in what it demands from the states but what I’m asking is, can we frame this as a non-discrimination issue?

Stig Langvad:
Yes, I think you can because if you are forced to live in arrangements which you don’t want to be in, if you are deprived of the right to choose where to where to live with whom to live and what to do and when to do it, it is a violation.

You could of course go up in your system. You could file a complaint to the CRPD committee.

But before you do that try to look into the report from the the inspection of of the UK during the crisis. I think you will find some useful information there. I remember when I was a member of the committee that it was a little bit difficult for some of the members of the committee to really understand the context and the wealth of the Scandinavian countries. They thought that we were living in countries where milk and honey floated down the streets and that we had all opportunities and we could just pay. What I’m trying to say is that you will have to be clever to file a complaint about deinstitutionalization in Sweden for instance, because some of the members of the committee will probably not understand what you’re talking about. To them you are so far away. All over, except for mismanagement of persons with psychosocial disabilities.

Ola:
Yes, so there is a stereotype that we’re doing very well in the Scandinavian countries with human rights, so it’s hard perhaps to grasp that there could be human rights issues.

Stig Langvad:
Yes and a challenge for money, competition for money. 30 million here, 50 million there, they think that we have sufficient financial resources. I think we have, but we have to be very clever to get them.

Ola:
So would you say that it is a better strategy to use the committee more often in a larger number of cases or do you think it’s more important to find those very good cases?

Stig Langvad:
The committee is people who are working voluntarily and the Secretariat in the UN is small. If you want to file complaint after complaint after complaint, that would be a waste of time. I think you should pick the right ones. The good ones. Those that add to what the committee has already dealt with.

And you should be better, everyone should be better at utilizing the outcome of the complaints that have already been filed and have already been decided upon. You should be happy that Sweden was the first one to lose. That decision was difficult to understand because to many people it was a little bit fluffy.

Ola:
In what sense?

Stig Langvad:
The first case against Sweden was about someone who wanted to enlarge her apartment or her house and it was seen by some as a luxury problem. Because they don’t understand that it could be discriminatory in Sweden. In many countries she would probably have been living in a hospital or somewhere, so it can be difficult sometimes to get the right picture in front of your eyes.

Ola:
But if I remember correctly, the committee said that there were violations in that case, so the problem wasn’t with the committee in that case. The problem was with the government then implementing this because they didn’t.

Stig Langvad:
Your government argued that it would be too expensive to let people be reasonably accommodated

and my argument was that you have to do this case by case. You cannot say no one is allowed to enlarge their house because then you will not be reasonably accommodating. If you understand what I mean?

Ola:
I think so because if I read the convention and the comments correctly, the word reasonable is not about the question of costs. It’s about whether or not this can actually enable a person to have their rights in different ways. To look at the individual situation and reasonable accommodation is something you do in the individual situation compared to general accessibility measures. I agree with you that there is generally a quite difficult path you have to take when you want to demand reasonable accommodation in Sweden. We haven’t really incorporated the concept into how our general system works. It’s more about possibilities.

Stig Langvad:
The danish law on non-discrimination on the grounds of disability does not include accessibility or reasonable accommodation to its full extent.

Ola:
Oh really?

Stig Langvad:
It is just about looking at persons with disabilities and saying, “oh, you’re nice” and “it’s not that bad”. But you see the paradox. What is most essential is not included within the legislation.

Ola:
And you’re trying to cut off the real change and instead giving the small things that don’t really cost. What’s actually just very indecent, that could be covered by the non-discrimination laws that that’s something that should be covered. I think you’re right. Coming back to the discussion on the implementation of the convention and actually taking rights and mainstreaming them into other laws that guarantee them for the general public too, it is a better way than simply talking about non-discrimination laws because then you usually get stuck in these misconceptions about reasonable accommodation and accessibility.

Stig Langvad:
And then they look at you and say they are not discriminating and you say “yes you are discriminating”. Instead you have to make good pictures saying that when I’m not able to do ordinary things in the same manner as you are, then it is actually a violation of my rights, but again it is only reasonable. You cannot demand everything. You can demand what is reasonable and proportional financially.

Ola:
So are there any kinds of individual cases that you would like to see reach the committee, even though the workload is high and people work for free generally?

Stig Langvad:
It’s difficult because I have not seen the latest complaints. I think that the best way of utilizing your ability to complain or to file a complaint is probably, from my perspective, to focus much more on those that are most deprived of their rights. Persons with intellectual disabilities and persons with psychosocial disabilities. That is my opinion. I haven’t made an analysis of the cases pending, but I think you should definitely go for clear cases and new cases.

Ola:
That is very interesting. We will be thinking about that as we go forward definitely. In the coming years, what do you see as the most urgent need for change in realizing the rights and promises of the CRPD for all?

Stig Langvad:
I think that’s what I told you a little bit before, I think it is about having the same vision.

We have to create the same vision. In the EU we had the HELIOS program, HELIOS II. I think it ended in 1996 or 1997. I think what came out of that was a common understanding across the European member states from that time about rehabilitation, about the right to self-determination, the differences between persons with the different kinds of impairment, disability etc. But somehow we have lost that. I think we have to reinvent this common understanding because when they don’t see persons with disabilities as individuals with rights, then it is uphill. I would love to see a HELIOS III because then in the EU all 27/28 countries would see persons with disabilities, not equally, they would recognize you as a human being, that is they’re not for a purpose but together with the rest of the people and must be accommodated. I hope you understand what I mean.

Ola:
I think that the convention is in a certain sense doing this. But the problem is having the convention understood on a broader scale as doing this, because if you say that the convention isn’t enough then I suddenly don’t really know what to do with it. Is it, is the convention enough?

Stig Langvad:
It is enough but before implementing it, to really advance in the direction shown by the

CRPD I think we need a mutual understanding.

Ola:
Jamie, do you have something to say on that?

Jamie:
I can understand that. I realize how far away we are away. I can’t remember who I was speaking to but we were talking about the UNCRPD and general comment number 5, and somebody’s response from another country was that “That’s just a wish-list”. If you see it as a wishlist rather than seeing it as the explanation of the rights disabled people have, then we are just so far away from this coming understanding. I agree with you. I was active in the HELIOS project back in the 90s. To bring back the  common value towards this thing with people would be needed. Sometimes in history you go up and then you go down, we were at the top maybe then and now we are going down when people can say the general is a wish list rather than seeing it as something that needs to be implemented. This common understanding is something we need to work on again, which means as you’re saying Ola, that we have the Convention which is the understanding but then having a broader understanding, having people know about it and understand it.

Stig Langvad:
I think at least having the right ones knowing about the CRPD but the general public needs to understand the needs and the presence of persons with disabilities. I don’t think that your neighbour should be aware of the CRPD, but she should be aware of your qualities and your rights to be living independently. It has to be much more concrete to her. But the politicians and the civil servants should know that the CRPD is there and should live up to it. The wish list is in my view, in the committee’s view essential to be living up to. To grant you the rights that you are entitled to have, or that you have just by being a person.

Ola:
I think that’s a good way to start rounding off this discussion to get back to the core of the convention, that everybody who is human has the right to be a part of general society and has rights under the human rights regime, against each other and against the state, and that the committee’s work is very valuable to us in actually making this a bit more operational. So we’re very grateful for your work in the committee. Stig, is there anything else you would like to add to the discussion. I think we have done most of the topics.

Stig Langvad:
I think we’ve covered almost all that could be said at this moment. We could have gone into depth with other articles, but this is about article 19. I think that we have covered many important aspects regarding that article.

Ola:
Thank you very much for taking the time to talk to us about these issues and the rights!

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