In this episode of On Our Terms, host Áine Kelly-Costello talks to long-time Slovenian independent living activists Elena Pečarič and Klaudija Poropat. We hear how the friends found being institutionalised as children. They reflect on how far their organisation's independent living activism has brought Slovenia's personal assistance laws, and the challenges which remain.
In this episode of On Our Terms, host Áine Kelly-Costello talks to long-time Slovenian independent living activists Elena Pečarič and Klaudija Poropat. We hear how the friends found being institutionalised as children. They reflect on how far their organisation's independent living activism has brought Slovenia's personal assistance laws, and the challenges which remain.
Áine
What’s it like being inside these institutions?
Elena
Similar to be in the prison, but if you are in prison, you know why you are there.
[Acoustic guitar music, and singing - lyrics: "I've got a little story, to tell you. Just some stories, about me, about you". Music fades to background while Áine speaks]
Áine
Welcome to On Our Terms, a podcast featuring diverse disabled perspectives on independent living and disability activism, produced by ENIL, the European Network on Independent Living.
I'm your host, Áine Kelly-Costello. Today I talk to long-time Slovenian independent living activists Elena Pečarič and Klaudija Poropat. We hear how the friends found being institutionalised as children. They reflect on how far their organisation's independent living activism has brought Slovenia's personal assistance laws, and the challenges which remain. Enjoy.
[Music stops]
Hello, and welcome. I'm talking to Elena and Klaudija. Can you both introduce yourselves, please? Can we start with you, Elena?
Elena
Yes, I am Elena, I'm 50 years old and finished study of philosophy and sociology of culture. And now I am responsible and also the president of YHD, to think and then to make possible independent living. We also, during our study, we were involved in producing theory of disability of the social model, and then we began to apply it in our lives.
Áine
Thank you, Elena. And Klaudija?
Klaudija
Like, more or less the same, I'm also 50 years old. And I also studied philosophy and sociology of the culture. And I was in institutions from the early ages, that means from seven when I was seven years old, and there, I also met Elena, when I was eight, something like this. And from then we were more or less together, and we are friends. In an institution, we also met Emil, like Elena said, and because we want to live like everybody else, we were also opposed to the rules of institutions. And we begin to think, how to change our own situation. Because when we wanted to go to study, we found out that there are no solutions for disabled people to live with help of social services in the community. And that was also one of the main reasons that we started the personal assistance programme later, but that we already then thought about how to live our lives like everybody else, regardless of our disability. And that's how our organisation was born. And that's how we started to be involved in different social projects and activities to lead us to where we are today.
Áine
Yeah, that's incredible. Can I just go back a little bit and paint a bit of a picture because I think, Claudia, you mentioned that you were both institutionalised or you were institutionalised from when you were seven. So it sounds like you grew up in an institution and can you maybe tell me a little bit of what disabilities you have and was that the norm? Was that normal in Slovenia, back in the 1960s?
Klaudija
This was the only solution if you want to go to school, like to finish primary school, secondary school or so on, you have to leave your home, even if you have parents who want you to stay at home. But now, they said to our parents that for children like us we are both in wheelchairs, there are institutions and this was more or less the only solution at that time moving from one institution to another depending on age of disabled children and then also depending on I don't know when you when we finish the secondary school for example, many of our friends have to go directly to home for old people to an institution for old people because there were no other solution for them because they need a lot of help during the day and also during the night. The only answer at that time was institution if you didn't have a family who would take care of you if you needed help in everyday life.
Elena
Klaudija is paraplegic. I have muscular dystrophy, so we are totally different about--during the diagnosis, but always when we were together Klaudija helps me a lot. Klaudija was my first personal assistant.
Klaudija
First personal assistant. Because we went on holidays together and I was the personal assistant of Elena and everybody said, “oh, but how is this possible? You cannot, you're also on a chair”, and so on. But I think it's a kind of living that we learn ourselves in this institution. Yeah. Because there we help each other because we did not cut much help from the staff. So it was something ordinary to help each other.
Elena
I'm quite small. And well, Klaudija is quite strong.
Klaudija
[Laughs]. Was quite strong.
Elena
Yeah, you still are. So, we manage, yeah.
Áine
I love that, about helping each other. Because that also tries to go against this stereotype, right? That disabled people can't be assistants or disabled people are only the ones who receive support? Do you want to paint a bit of a picture for me? Like, what is it like being inside these institutions?
Klaudija
Sometimes it's very hard, because
Elena
Yeah because it’s like being in prison, but if you are in prison, you know why you are there.
Klaudija
As children, we did not know the reason. It was very difficult for us to comprehend that when we were six, we could be at home and play with our sisters and brothers and children in the neighbourhood. And then, we were seven, and we could not go to the same school as our siblings or children in the neighbourhood we had to go away. So this was very difficult to comprehend for a child. Now, we can resonate that this was the system, but the years in institution changed us in many ways. And this is also why we strongly are against institutions. At that time, no disability organisation was against institutions, they also dumb us a good way of taking care of disabled people. It was common thinking that disabled people should be together in one place. They have a common identity just because they're disabled
Elena
They are different, so…
Áine
It sounds like from when you were teenagers, you already had that consciousness that no, this is not okay. This is not what should be happening to disabled people. So tell me, how did you manage to get out?
Elena
During all these twelve long years, we were thinking, “why are we here?”. And this is injustice. And we have to go away.
Klaudija
We also got, in secondary school, we got a new psychologist in the institution *name of the psychologist*, he began to teach us about many things that opened some of our--
Elena
--our minds. To read Foucault, to read Freud, to read many thinkers… To get--
Klaudija
--some answers also, to our questions. Social services were also very important to us to begin to think about disability in a different way. Not just through our medical diagnosis or through this model, which was, at that time, the only one, but in a way that disability is very similar to other discriminated groups, you know, so we are not the only one. After that, we also, because of his influence, we decided to study philosophy and sociology of the cultures.
Elena
Yes, to change our view, also the view of society and also to try to change as society. Yeah, why ambitions.
Klaudija
We also try to change the institution, of course, in which we were in but these were just like, little achievements, I would say, in our everyday living, which give us maybe a little bit more freedom. But at the end, the institutions that we were in, still exist. They're still alive. The pupils are still there, going to school. It's much nicer from outside. They also like to say it's much more space and each has its own rooms and so on, because the conditions that we were living in at that time were more, I don't know, more horrible. For example, we had two bathrooms for 60 people, you know. So it was, it was quite different the conditions, the living conditions in institutions. But in the end, when you see this is just for the people inside, it's just harder to oppose these conditions. Because the first thing that we were opposed to were the living conditions and the rules, also the food, the food was very important. And the rules, when to wake up, when to go to bed, when to learn, when to go to school, everything was structured for us inside institutions.
Sometimes I'm very happy that people don't know what it means to live in institutions, because then that means that they were not forced to be there. For example, in our state in 98, we also got a law for integrated schooling. And that means that disabled children could go to ordinary school, like everybody else, it was not anymore obligatory, to go into institutions that just finished primary or secondary school. These are just like little steps, but I'm still happy for those who persevere. And for this possibility for the future generations, it's very difficult to explain why we are like we are to younger generations because they did not experience this trauma.
Áine
Trauma. Mhmm. Thank you for sharing that.
Klaudija
They don't understand why we fight everything so much. You know. Why do you fight for this, fight this and this? Because they – some of the services that we needed to fight for, they are already there for them.
Áine
Because you fought for them.
Klaudija
Sometimes when we ask ourselves, where is the younger generation? I don't know, maybe I'm happy for them, because they can live an ordinary life without asking themselves these questions about equality. But I don't think this is really true. We have a lot of inequality, still to fight and situations still now. And we still have a lot of people who live in institutions still because they don't have other possibilities.
Áine
Do you see the use of language, for example, around saying that, I don't know that smaller group homes are considered community services? Or, you know, I was reading a report that said in Slovenia, that sheltered workshops could be grouped under Community Services, is this something that, you know, that you would fight against?
Klaudija
We still have big institutions, very big institutions. We don't have this, this kind of, let's say small group homes, and then like I said, I think that in Slovenia, they don't really are doing deinstitutionalisation. They're doing just decentralisation of institutions, because big institutions are still there and taking care of these small units. But you know, institutions are not just the walls around us, it’s also the rules around us.
Elena
A principle, how you function.
Klaudija
From experience, in some small group homes, the people are not unhappy there because the staff there is okay but then there is another one who are not okay. But that means that the people have no possibility to choose who will help them, how will help them, where will help them and they don't have really a possibility to choose where to live. It's like okay, if I move from a big institution to a small group home, this is an achievement, you know? But thinking about living independently in the community with the services in the community is something what is still unachievable for many of them.
Áine
Yeah, different stages. Can you tell me about your organisation YHD? What does that stand for? And why did you start it and what does it do?
Elena
[Laughs]. It's quite funny. Youth Handicap Depriviledged.
Klaudija
Not privileged but deprivileged. Unpriviledged.
Elena
We still have this YHD, we always youth.
Klaudija
Young.
Elena
And the main project is, it was achievement of law for personal assistance but also, we do a lot of things about equality, about promoting Independent Living.
Klaudija
Also, some cultural events and lectures, but let's say that in the last two, three years when we achieved the personal assistance lobby, our focusing on education, about independent payment and what is personal assistance and what is not. So, and we also are working on deinstitutionalisation, we really think that other services in the community are necessary for Independent Living, because now when we have just personal assistance, everything is personal assistance, any kind of help or support a disabled person, it is personal assistance. So this is quite confusing and before, when we did not have the right for personal assistance, we had just personal assistance programmes schemes. That means that for more than 20 years, we were running out the personal assistance programme for the users in our organisations. Yeah, there were about 100 users before. And now this is of course, a right of every disabled person in Slovenia.
[Music - a few seconds of acoustic guitar interlude]
But after that, we felt okay, this is it. Now, we will go on with new projects and move on. But now we find out that we have to fight again for the right interpretation of what personal assistance and independent living is. They are using the same words, the same principles, because the law of personal assistants was – 80% was to confirm our preposition, which we made in 2012. And in our preposition of the law, we already put the principles of independent living. But the point is implementation of those principles. That means that other service providers of personal assistance are not providing personal assistance according to these principles.
But they're using the same word, the same vocabulary. On their website, you can you can see this, the same things as the right to choose your own assistance, the right to choose where to live, and so on, you can see the same words, but those are just words, a lot of service provider like they are organising the personnel systems of their users. That means that they are sending them the staff, they are making the timetables of them, they are doing everything that the users of personal assistants should do in their names and for them. Yeah, and they say that this is because this is easier for the user. But for us, this is a big disappointment because we think they are patronising.
Elena
They are not acting, they are just objects.
Klaudija
Yeah, they became an object of care, and not the subject of their own lives. And this is a problem that the personal assistance is used just as a social service. And we don't think it should be done in this way.
Áine
Yeah, that's hugely disappointing because it undermines the legal system, if they can get away with not actually following the law.
Klaudija
Sometimes, some of the users left us because they say that they have to work too much when we come in, they are in our organisation [laughing], that they cannot manage to do all the things that they should do. And then we said yes, but this is the right way. If we want to have the same rights, then we must have the same responsibilities and obligations. You know? It's not just if you're just – this is our point of view.
Áine
Obligations around for example, employing people as personal assistants?
Both
Also, yeah.
Klaudija
And choosing them and then also also be responsible for the choice and for the schedule. For the obligations of the labour law, for example, we also have some restrictions that some employers must fulfil.
Áine
Has your organisation expanded to also cover people with any different disabilities? Like, for example, intellectual disabilities?
Klaudija
Regardless of the disability. Yeah. It's just that if they don't have legal capacity, then the person responsible for the legal capacity must understand the documents. But we talk with the people who
Elena
who also can talk.
Klaudija
Yeah, we are hearing them not just their legal representatives, the legal representatives just signed the documents that they cannot sign for themselves.
Áine
Yeah, no, thank you for sharing all that. One thing that you touched on earlier was how difficult it is, perhaps between generations because the younger generation now in Slovenia, some of them are, you know, not institutionalised, you were saying. And I wondered if there were any kind of lessons that you've learned that you would want to share with disabled people who are thinking about becoming activists or getting more involved in activism or just starting out?
Elena
[Laughs]
We don't have, because we were asking ourselves quite every day, this question of how to involve more young people that also will advocate our heritage, but we don’t have an answer.
Klaudija
The right to personal assistance in Slovenia is [for] disabled persons, not only with Slovenian citizenship, but also with permanent residence. So maybe if somebody does not have it in their own State and wishes to work in that field, maybe they should think about it. But I always say to the young people, I say “maybe today, this is your right, but for tomorrow, you don't know. You never know when they will take this right away. You know, the rights are broken every day, in many States, or in States richer than Slovenia, for example. I'm also sometimes asking myself why we are doing, for so many years, what we are doing. And sometimes we were really tired, because we felt very alone. But I must say that we got a lot of support from ENIL in a way that we saw that we are not the only ones. Because at the beginning, it was a little bit terrible. Or just be thinking this is really impossible, is this really something to eat realistic to achieve. And then we find out later we find out about the independent living network and so on. And then we find out that also in other states, the people saw, it was the shame and the history was similar. So it was really a big support, that we got a big push forward, that we got from that, that's really encouraging, we can share the knowledge we have, we are now very glad when somebody who does not have personal assistants ask us to tell them our story. And so they got inspired by our story. And, and this may also be very glad so we can pay forward, I can say in a way, what we got from others. Before when we did not get what we were striving for, we can give forward to others. So I think this is the right way. We also get a lot of support from Sweden and the UK and Norway, of the countries that had personal assistance, and we did not have it, and support us also in a way that they organise some educational tool. And we are doing the same now if somebody's asking us, you know, that they want to come to see how we are working and how the system is working. If you're talking just about activism, then I don't have the answer because I think this is like a calling for everybody who is living in this way for so many years.
Elena
All these years, we were always politically involved in the sense that we
Klaudija
we must be present with our ideas also when the government is changing, you know? I remember when we were on the visit at one ministry, at the Ministry for worker and social affairs, and then, the only person that was always there was the secretary you know? We said to the Minister, when you know you are the fifth one that we are talking to. And we are still here, but they are not anymore. So maybe you should think what you can learn from us and not what you can give us.
Elena
We were also always involved in also teaching this new parliamentary what is independent living, for what we are fighting, that we are fighting for our freedom, also our possibility to live in a way that we want to live.
Áine
Yeah, that's powerful.
Klaudija
Every few years that comes somebody, most of them are new. And then you are in one way, you're always at the beginning of the road, which is, sometimes this is frustrating, because you think that this one day would end, but it's not.
Áine
When it feels like progress is not going as quickly as you would like it to and everything is quite, you know, hard, is there something that kind of keeps you hopeful?
Elena
Oh we are still there, you know? Still fighting. And we will be still here …
Klaudija
When we began, we were thinking okay, we will now work on this field for three, four years. Yeah. And then, the law will be passed, and we will have the same rights. And then and that's it.
Elena
And I will be philosopher, and write books, just write books and teaching…
Klaudija
And then something that was at the beginning our hobby, our hobby out of necessity, I would say became our professional way to work and to participate, you know? So, it did not take us five, four or five years like we thought at the beginning. It took us more than 20 years, 20 years or almost 25 years.
But like you say, sometimes the achievements are slow but if you are right, there will be a time when you will succeed to achieve your goals or a part of them.
Áine
I love that.
Elena
I hope that we will inspire you, not just you but all the listeners.
Klaudija
Thank you for – we must say that we are honoured when--sometimes they are asking us, “can you tell us about everything you have done" and so on. And then you think “oh, but that's true, we have done a lot”. Because we forget in everyday life and everyday work, we forget, everything we had to do to be where we are now. And this is maybe a point, this is also a little push-up for us to remember what sometimes we have done really something that was impossible to do. And we have survived so many years to have enough money for the wages of our personal assistants, even if we have one year financement from more than 40 sources, but we survived. And every January 1st, we still had personal assistants, even if in December, we did not know if we would have the contracts or not in January 1st.
Elena
Yeah. Because before it was like a project and…
Klaudija
It was very hard to survive with so many employees, you know, and the most part of employees were of course, personal assistants. So it was very hard to push all these years. But sometimes it's good to remember what you have done and maybe you're a little bit in calm with yourself. Not to see just terrible things that are still in front of you, but also to see some achievements that you have already achieved.
Áine
Absolutely. Yeah, you are living in such--and still are by the sounds of it--in such precarious you know, situations, but have managed to be so resilient, more than more than anyone should have to be right? So yeah, I think you can be incredibly proud of your achievements, and I have huge respect for it.
Klaudija
We were always a minority and I think we always will be a minority
Elena
Yeah
Klaudija
and maybe this is also a right way to be.
Elena
--to be yeah.
Áine
Thank you so much, Elena and Klaudija.
Klaudija
Thank you.
[Áine speaks over acoustic guitar music]
Áine
Thank you so much for listening. Tell your friends to subscribe to On Our Terms wherever they listen to podcasts.
The featured song is Come Here by disabled performer and activist Dennis Queen.
Podcast cover art and visual design by disabled illustrator Hatiye Garip.
The first season of On Our Terms is hosted and produced by me, Áine Kelly-Costello, for the European Network on Independent Living.