In this episode of On Our Terms, host Áine Kelly-Costello catches up with Adonia Trikalioti, a long-time disabled independent living actist from Greece. They talk about why she and cofounders started an independent living organisation. It's a fascinating conversation about activism tactics and challenges in Greece, especially in rural areas.
In this episode of On Our Terms, host Áine Kelly-Costello catches up with Adonia Trikalioti, a long-time disabled independent living actist from Greece. They talk about why she and cofounders started an independent living organisation. It's a fascinating conversation about activism tactics and challenges in Greece, especially in rural areas.
Adonia
I wish that the next generations could freely choose all these things I wanted to do but I have not done.
[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 catch up with Adonia Trikalioti, a long-time disabled independent living actist from Greece. We talk about why she and cofounders started an independent living organisation. It's a fascinating conversation about activism tactics and challenges in Greece, especially in rural areas. Enjoy.
[Music stops]
I'm talking to Adonia Trikalioti. It's really great to be talking to you today, Adonia. Hello and welcome.
Adonia
Hello, Áine, thank you for inviting me.
Áine
Could you start off by introducing yourself?
Adonia
Well, I am Adonia Trikalioti. I live in Greece, in a small town called Securio, near the big city of Larissa. And I'm a full time wheelchair user, I'm quadriplegic, and I have co-founded the first and the only one independent living organisation of Greece ‘i-Living’. This is my hobby, because I've also been working for the last 20 years. Before that I was studying, of course. So in my free time, I’m trying to promote through i-Living this right of ours. And I'm also involved on a volunteer basis in many strategies concerning disabled people in Greece, for example, strategies by different regions of Greece, a national strategy for DI, I'm also a member of the European Network on independent living.
Áine
Thanks so much, and for your experience and independent living and starting the i-living organisation – super interesting. Can you talk about the journey of that, why you started i-Living?
Adonia
Many years ago, almost 20 years ago, I learned that there are some persons in other places on Earth, some places are very close to Greece, like in Europe, where disabled persons like me, can live independently and not be supported by their family members. And then, I realised that this is something that I also really need. So I searched on the web about Greeks that have the same right as I have, and that are also willing to fight for introducing the idea of independent living in Greece because this was completely unknown as an idea. And as a political [indistinct] provisions from our government to live independently. So I met some other guys, who also had physical impairments, and the six of us formed i-Living, the Independent Living organisation of Greece, in late 2014. After participating to the Freedom Drive of 2013
Áine
Wow. And so before you started i-Living, in Greece, was the only option for people to either live in institutions or be supported by their families?
Adonia
No, actually, that is the only option until today. Nothing has changed, apart from the foundation of iLiving. It is just that the last few years, for a couple of years, the government has announced an intention to legislate personal assistance. We contributed to that as an organisation and the outcome of it was to legislate the right to personal assistance, for the first time in Greek history. It happened last September. And now we are waiting for a pilot project for 1000 Disabled users to start. So that was the only thing that changed, but Greeks are still living without any options, being supported by family members, so by informal assistants that we pay by ourselves as much as we can. As much as we can afford, or the other option is living in an institution.
Áine
It's a significant victory to get personal assistance legislation passed and I suppose it feels like everything's happening very slowly compared to perhaps elsewhere in Europe. But was there any kind of lessons that, you know, you learned throughout that advocacy for the personal assistance legislation or for deinstitutionalization that might be relevant in other countries that are pushing for these things as well?
Adonia
That was a big school for me, I learned many lessons, but I learnt them the hard way. Because advocating for our rights and being strict to our rights, as they are stated in the UNCRPD, only provoked enemies for us, for our organisation, and for each one of us, as individuals, from persons that don't want this to happen. All think that disabled persons shouldn't have all these rights. So, I don't know if my lessons can be applied to other countries, because maybe it's just something that only Greece has. That they don't like progress for the whole community, or be afraid of the emancipation of the disabled persons.
Áine
That's a tricky one, I suppose. Because, you know, I guess there are always times where you really do want to hold the line and be quite clear that these are our rights under the UN Convention on the Rights of Persons with Disabilities, or in whichever pieces of strategy and law have already gotten past while at the same time managing to move forward in some kind of constructive way. So, I'd say that probably is very relevant for other countries.
Adonia
I think that if someone decides to advocate for a similar thing, like independent living or something like that, first of all, he or she must make sure that he or she has a lot of allies, and that there are many persons willing to assist that purpose. And later, we must realise that we have to have patient and be sure that politics is something real complex. And if you have to negotiate with politicians, we have to be very careful, and be prepared, really for everything. Because during our fight, we had this wonderful outcome of the legislation. And now, we have to fight to implement it nationally. But many things have happened. And we just grew all the way, we gained the experience of 100 years, in just a couple of years, we became wiser, that was for sure.
Áine
Where you live, you mentioned you live in a town, and that you're involved in strategies and sort of different regions of Greece. How does the landscape kind of change geographically in terms of what challenges there are for independent living in different perhaps rural versus urban or different areas within the country?
Adonia
The problem with rural areas of Greece is that in a country where we don't have many options, either way, even the ones living in the capital of Athens. These options were concerning where someone could go to work, or to have a university degree, or to find assistance, even if someone is willing to pay for it, this option becomes less for those of us that live in rural areas. And we also face the problem of the lack of transportation within Greece, because there is accessible transportation, but only in the capital. So if someone needs to leave a small town, or even visit the nearest big city, we can’t use public transportation. We have to go there with our own car or special wheelchair accessible taxi, which there aren’t many of. So, they are more expensive. So the cost of life is even more expensive for people in rural areas.
Now that the pilot project of PA is going to start, this will be applied, only to persons living in the region of Attica, where the capital is. So, the differences between disabled persons in Greece, living in the capital, and the rest of us will be even bigger.
Áine
That's such a shame that the pilot isn't taking a more geographically inclusive look, because of course, the challenges will be different in different areas. So if it's not actually accounting for that, then you need another pilot in rural areas, really. Um, but I think you touched on some interesting things there around both the challenges of finding assistance, let alone paying for it. Which is, of course, why you're fighting for personal assistance, but also, you know, the aspects of independent living, which are not just about personal assistance, necessarily, so access to transport, and cost of living and being able to kind of afford to get around and things like that. And I am wondering – what does Independent Living mean to you?
Adonia
We've made a video in our organisation that is already translated. It has been translated into eight European languages. It's named “independent living means”. It is actually having options to you, in your life, for someone to be able to freely choose the way of living. I haven’t chosen the place where I live, I haven't chosen the persons with whom I live, I haven't chosen my studies, I haven't chosen my profession, and all that lack of choice was because of the lack of independent living in Greece. And I wish that the next generations could freely choose all these things that I wanted to do, but I haven't done.
[A few seconds of upbeat acoustic guitar interlude]
Áine
I noticed that you mentioned that when you started i-Living, it was a group of people with physical disabilities. I wonder, has it now expanded to people with a bigger range of impairments as well?
Adonia
We were always open to every impairment. And while we are advocating, we are advocating for everyone because we had a proposition when we started talking with the government about PA, that we could have PA only for people with physical impairments, only for the quadriplegic ones. And we refused it. And we say that we don't accept to have PA if not every disabled person that needs a PA has it. Especially the intellectual impaired ones. I think that their voices are not heard. And I mostly advocate about them and less about persons with physical impairments, because I'm also very disappointed by persons with physical impairments in Greece. Because i-Living has not expanded, people are not willing to fight for any right. Not even for a right so important and I was expecting by persons with physical impairments to support us in this fight.
Áine
That is disappointing to hear. And thank you for being so honest about that as well, because that's not easy to say, to sort of mention when others with a similar impairment to you, maybe not looking outside of, you know, the challenges that they immediately face in their lives to take a more holistic view, particularly for people whose voices really need to be amplified, and who are not so visible and audible and within these independent living spaces.
Adonia
A few months ago, when there was a joint ministerial decision about the pilot project of PA, before it was signed, I contacted many persons with physical impairments. Persons who had university degrees, and they had the means to go out and make a march about our rights. And I called them to go altogether to the Ministry of Labour, and ask for the pilot project to be implemented nationally, not only in the region of Attica. I thought that it could succeed, if we did it. But most of them told me that they don't want to get tired and to travel from other places of Greece, too often and spend money to do it, or they were already disappointed that nothing good will come out of it.
Áine
You know, I think one of the things that activists, particularly maybe in this independent living space have had to do so repeatedly is really envision and push for a much wider understanding of what Independent Living looks like, and who it applies to. And, you know, it's really great that you were pushing for that, but it is exhausting when others are not, you know, in allyship with that. I wanted to also touch on the fact that, you know, you've been advocating this whole time during a pandemic and that for some people travelling during the pandemic, because let's be real, it's still a pandemic, is extra difficult or extra unsafe as well. And I wondered whether there were any sort of particular challenges, or maybe any new opportunities with more online advocacy that you found, while advocating during the pandemic?
Adonia
Advocating during the pandemic has added opportunities to all of us, because most consultations were through Zoom. So more people, more disabled persons could participate in it. About what I told you, about the protest outside of the ministry, it was during the Spring, the Spring is hot in Greece. So it wouldn't be very dangerous to go there. And I proposed it mainly to persons that I knew would go wild and go to places with people and not think a lot about the pandemic.
Áine
Yeah, I hear what you're saying, you're proposing it to people who were able to, to do that and also trying to, you know, encourage disabled people I suppose to be able to input in other ways, online on Zoom, as you as you were saying. How do you reach out to disabled people who might not be as connected with the concept of independent living, or who might be living in institutions?
Adonia
We have tried in many ways, we have not many ways to reach people who are in institutions, because it is difficult for us, the co-founders, of i-Living, to move because we may be the pioneers or the leaders of i-Living in Greece, but we don't live independently. I'm living with my mother who is almost 80 years old. So, it's not easy for me to visit an institution, but we have collaboration with another organisation of Disabled Persons with a zero tolerance emancipation movement of the disabled of Greece and they visit institutions. This is our link to institutions, but I believe that the persons who are still free and can fight for this right, we are reaching these persons because I believe that these are the ones who can make a difference. And make the circumstances good enough so that people living in institutions will get free someday. It is our responsibility to do it, not people already living in institutions. They cannot fight because no one is interested in them. On top of that, persons that live in centres of supported living, they don't even have the right to apply for PA. Because in Greece, these persons are considered to be deinstitutionalised. Although, we are saying all the time that there are smaller institutions, and they are named centres for supported living, but persons who live there have not chosen the place of residence. So other persons that live with them also have assistance but they share their assistants. And they have to do particular things everyday that are designed for all the residents. So they are institutions, with clear terminology.
Áine
Yeah, that's so important to hold on to that language and to say, yeah, they may be smaller, but they're still institutions and not let the government get away with saying, Oh, well, we've moved them from one place to another, and that counts as deinstitutionalisation. When it actually doesn't.
Adonia
There were consultations for weeks for a DI strategy, and the participants were about 60 persons that were running different institutions. And we were just two or three disabled persons and each time, we said that persons living in institutions should participate in it, especially during the pandemic, it was through Zoom. So it was very easy for anyone to participate. But this didn't happen.
Áine
Yeah, that's super harmful as well, right? Because people who are in the institutions, and also people who've been genuinely deinstitutionalised, if such a thing exists in Greece, both have, you know, the critical perspectives to share on what it would actually take to make sure that people did have personal assistance and other forms of supportive living that are not living in these small institutions? How do you grow the community of people who kind of understand what independent living is and that it's a vision that, you know, acting collectively is really powerful on
Adonia
Our goals, our aims were not only the disabled persons, but also their environments and the wider community. So, we had different events for each different group, through the web or in person. We have some conferences in Athens, where we explain what independent living is, we have events in the centre of many cities of Greece, where we are calling passers by, to tell us what they believe that independent living is, without giving them any clue, without even knowing that it is something for disabled persons. And most of them have answered that it is freedom. So, they were right. And we're trying to make people from Greece, to have contact with the European Network. We have formed many groups for the Freedom Frive, for summer schools. We also have messages in the Greek highways about independent living, we have messages in the metro of Athens, the subway.
Áine
Creative ways of reaching out. Well, thank you so much. I just wanted to finish up by asking you, when, you know, all the disappointments of the last few years and feeling like the advocacy is kind of endless and things. And the world is quite difficult for disabled people. What keeps you going or keeps you hopeful?
Adonia
About the future? I just believe that since we have this legislation, sometime in Greece, independent living is going to be implemented somehow and we’ll stop funding institutions and people, especially with disabled persons and their families will understand how important this is and how they must change their perspective. What keeps me going is that I knew that I would need personal assistance from a very young age when I realised my condition, because it is something that I live with throughout my life and I never expected that I would have assistance from any government. So I always knew that I would have to manage it by myself. So, nothing has changed for me. This is why I keep going, I know that I can manage it. And if I can make a change, a small change or a big change for every disabled person in Greece, I will do it in my free time after my work as I have done for the last eight years, I think. And I really hope that in the future, with these small changes, more people will understand how important independent living is and more people will reclaim it. So it will be applied in a fair way in Greece as it is in the rest of the world.
Áine
Thanks so much Adonia, really appreciate your time.
Adonia
Thank you, Áine.
[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.