“When we created the organization, people didn’t know about personal assistance, independent living, this kind of stuff… today we have PA legislation, we have pilot projects for about 2,000 people enjoying some personal assistance… It’s not perfect, but it’s a huge difference from when we started, so we’re happy and proud about that.”
Meet Kamil Goungor, policy and movement support officer for the European Network on Independent Living (ENIL) and chair of the Greek independent living organization (i-living). Kamil is originally from Poland, but is born, living, and working in Athens, Greece. Having studied journalism and communication at university, Kamil didn’t envision himself working in disability advocacy, as he says, “When I was studying, when I was growing up, I was saying that I don’t want to do anything related to disability, because this is the societal expectation, this is kind of the cliché… But in the end, you know, the fate has different opinions with me.” Participating in the freedom drive, a demonstration put on by ENIL every two years to promote the principles and values of independent living, in Strasbourg in 2013, Kamil was part of the first ever Greek delegation of disabled people at the event, and he got in touch with other disability activists and gained knowledge of the principles and practices of independent living. He took back the lessons learned from this experience and with a group of colleagues, created the Greek independent living organization (i-living), which promotes disability rights and independent living in Greece. According to Kamil, there is still a lot of work to be done, but the organization has made great strides to advance the rights of disabled people: “Greece doesn’t really have independent living. We’re slowly now addressing that, you know, personal assistance, but people are still in institutions, accessibility is difficult… It’s difficult even to move sometimes from city to city… But I also need to acknowledge the improvements… 20 years ago it was much worse, nowadays we see more and more people aware, especially the younger generation… I am optimistic about the future that progress will come, the only question is how fast the progress will come… That’s why I believe we need to act and be active ourselves to push for the change faster and also for those that are not able to do it themselves.”
Kamil on travels in Spain and with his personal assistant (Antonis)
Kamil got first-hand experience with independent living when he did a 6-month Erasmus exchange in Ghent, Belgium. “It was one of my dreams to go live abroad”, says Kamil, “and you know, usually I try to follow my dreams and to achieve them”. This was Kamil’s first-time living long-term outside of Greece and away from his family, and first experience with personal assistance. “To me it was a very new, and very eye-opening experience, because suddenly I was not in a protected environment, and I had responsibility about myself, and this is about independent living.” Independent living means having choice and control over one’s own life, but it’s also about having responsibility over one’s life and choices too, as Kamil recounted in one story: “I remember one case, we didn’t clean the dishes, and we were in a communal flat, so someone came the other day and was complaining that ‘Kamil, you left a mess in the kitchen’, and my assistant was like ‘why are you shouting at Kamil, he cannot even move his hands?’ The flat mate said, ‘no you are his assistant, his arms, his legs, but it’s his responsibility to deal with it.’ He was right. It was a big lesson for me.”
After gaining experience with independent living during the exchange, Kamil got involved with ENIL while in Belgium. As he puts it: “This experience in Belgium changed my life, because I went at the end of 2015, I volunteered for 6-months at ENIL, I connected with people, I saw how things work in Brussels… I was able to get knowledge for the Greek independent living movement… After some months, I saw a job opening at ENIL, and I said ok this is for me, I applied and since the end of 2018 I am working there.” Kamil is now working as ENIL’s policy and movement support officer, tackling a broad range of topics as part of his work, such as working with ENIL member organizations, supporting the ENIL youth network (one of the largest networks of young disabled people in Europe), working in some policy areas, such as the intersections of disability, climate change, and technology, as well as hate speech and hate crime against disabled people, and he also does a lot of work representing and promoting ENIL as an organization, talking about personal assistance and more. Kamil is especially proud of the work with the young disabled activists: “We are very proud of having them (ENIL’s youth network) and we believe a lot in them, and we want them to shape the organization together with us and be the future of the movement.”
Kamil working and speaking at conferences
Of course, as an electric wheelchair user, Kamil has personally experienced barriers and inaccessibility. In one instance, Kamil couldn’t reach a concert he had bought tickets for, because there was no accessible mode of transport to get to the venue. In another, he had booked a stay at a hotel he thought would be accessible, but when he got there he found it was not accessible and the staff simply told him they would lift him up the stairs. And in Greece, Kamil says he often has to drive his wheelchair in the street, because the sidewalks are in such poor condition, which of course is dangerous, and he’s even been struck once with a car, but thankfully it was not a dangerous incident. Despite these instances, Kamil sees himself as being quite lucky, as he knows friends and family that have experienced even more challenging barriers and situations related to their own disability. But, with the work of organizations like ENIL, Kamil is optimistic about the future of the independent living movement: “I am usually on the glass half-full side… I mean definitely the situation is not ideal, we have people still being discriminated, there is still hate crime, hate speech, there are people in institutions, there is the mentality, you know, a lot of ableism, that disabled people are children or infantizing disabled people… so there are these things, but on the other hand there is progress, I have seen that the society is much better nowadays than it was in the past, that we can go to many more places, more cities are working in the right direction… I see more and more countries every day implementing the personal assistance philosophy, which is you know, the basic pillar for independent living and choice and control for disabled people… and if you have the support you need, you are able to fight for everything else.” Kamil has especially seen progress in inclusion and participation of people with disabilities within society, which is such a crucial part of shaping mindsets related to disability and accessibility moving forward. As he puts it: “When I was in the school years, I went to a special school, today I wouldn’t have to do it, today I would have another option… this is progress and I can see it… when you have special schools and segregated environments, we grow up segregated from each other, and then non-disabled people don’t have experience of disability, and don’t know how to treat disabled people, and are afraid to talk to us, or behave in a bad way because they don’t have experience. Also disabled people don’t feel empowered, don’t have the confidence that they can live independently… so you know it’s very important to start at a young age, to grow up together… because as we say in Greece: everything starts from education.”
Beyond his disability advocacy work, Kamil is also a passionate traveler, and has his own travel blog (thetrawheeler.com). Kamil has visited 28 countries so far, and travels with his work in disability advocacy as well as for leisure. Unfortunately, there have also been challenges with accessibility during his travelling: “It’s difficult even to go to the other part of the city because of inaccessibility, because the buses are not accessible, you know you don’t have the support you need… Tomorrow, I travel to Italy and we need to do a lot of preparations, you never know if your wheelchair will arrive safe, and then you need to take the train… you hope that every step will be ok, but you are not sure… something that is easy for everyone else to do, for us it can be difficult.” But, Kamil still sees so much value in traveling, and he shares his unique stories and experiences from his journeys on his travel blog and social media channels. The Trawheeler is not an accessible travel guide, because Kamil chooses not to focus only on the disability aspect when traveling, but Kamil describes it as his personal travel journal, and a space where he can express a simple message: “Traveling the world is fantastic, you need to do it, and if I can do it, everyone can do it.” Of course, I share Kamil’s love for traveling, and like me, Kamil also loves traveling for the ways in which it changes us and all the ways in which we learn and grow through these journeys and adventures. As Kamil puts it: “how we change, from visiting other countries, how we change ourselves… and how we can, you know, get out of the bubble of our lives and see that ‘hey Kamil, you are not as important as you think, at the end of the day.’” He recounts one particularly impactful travel experience: “I was in Portugal, and I was looking at the ocean, and people were passing in the promenade, and I was thinking, ok, no matter if I am here or not, people will continue to pass in this promenade, and you understand this… you become kind of humbled.”
Kamil from his travels in Japan, Slovenia, and Iceland
Thank you so much Kamil for sharing your story and perspective with me. It has been a pleasure to get to know you and I have learned so much about what accessibility and independent living are about from discussing with you, and I’ve become wiser and more empathetic in the process. I hope we will get to meet up in-person and maybe go on some traveling adventures together one day. Please check out Kamil on his travel blog (thetrawheeler.com) and his Instagram (@thetrawheeler). And please remember to support the amazing work of ENIL and other independent living organizations that are fighting for the rights and accessibility of disabled people. People with disabilities are also just people, and everyone should have equal access to human rights, have choice and control over their lives, and should be able to participate and move within the world as equal citizens and human beings. Everyone has important and unique potential to add to the world, and we all benefit when everyone has equal opportunities to achieve their potential and follow their dreams! Please support ENIL’s important work using my fundraising link here: https://gofund.me/e2702b31