“The discussions nowadays in Finland, the organizations are worried about money, and the right-wing government, and the cuts, and the atmosphere that is not very human-rights friendly… But, this is all the more reason for us to exist I think… we have to. No one else will fight for us, we have to fight for ourselves”
Meet Sanni Purhonen, the communications officer for Kynnys Ry (Threshold Association in English), the Finnish human rights and independent living organization for people with disabilities. Sanni was born in Helsinki, but their family moved to Vantaa (a town just to the north of Helsinki) very early in her life, where she spent most of her childhood and adult life. Sanni has a younger sister and twin brother, who was born with severe intellectual disabilities. In fact, Sanni’s brother exhibited the more extensive disabilities within her family, and It was not until Sanni was over a year old that she was officially diagnosed with Cerebral Palsy, which in her case led to a physical disability and the need to use a walker and wheelchair. Thus, Sanni says “disability, also other than my own, was always part of our life.”
Initially, it was a question whether Sanni would go to a “normal” school or a “special needs” school, but Sanni was insistent that she wanted to go to the same school as everyone else, and her parents and family were happy to support her in this decision. Sanni says especially her mother was “a really big supporter of mine,” and was “really into independent living herself,” which Sanni believes played a big part in instilling a sense of independence and self-confidence within her from an early age. “I think that’s really important to many who end up in the disability movement, that your parents are there for you… My mother definitely expected a lot of me. I was never coddled in any way.” These are crucial elements of the independent living philosophy, and as Sanni puts it: “you cannot coddle disabled children away from the problems, just by putting them in their own environment.” Learning within a regular school was not always smooth sailing, though, as Sanni remembers: “When I was in the normal school I remember there were never any elevators at the school, there were only stairs, and I had a walker… and I walked up the stairs, and then my school assistant would lift my walker up the stairs… and that’s how we did it… but nobody ever talked about if they should’ve put the classes on the lower level or anything like that.” In a lot of ways, Sanni now sees the progress that has been made in accessibility compared to her schooldays, as she says, “we’ve come a long way, because nowadays we at least talk about accessible school buildings.”
Sanni always enjoyed school, and describes herself as an “academic child.” She especially enjoyed reading and writing, and knew she wanted to study comparative literature at university. It took two tries before she was accepted in the comparative literature program at the University of Helsinki, but in her gap-year before being accepted, she spent the time at the open university near her studying what else, but comparative literature. In describing following her passion for literature, Sanni humorously retorts, “People would ask me: ‘So what are you going to do after studying comparative literature? Don’t you want to make money?’ I was like, ‘No, no, I want to be an artist!’” Similarly to many of the disability activists I’ve met, Sanni did not see herself working in the field of disability advocacy. In fact, Sanni’s mother used to work within organizations focusing on disability issues, but Sanni remembers that she kept telling her: “No, I will never work for any organization, much less for disabled people.” But, through Sanni’s work in writing and journalism, she was invited to an event held by Kynnys. At the event, Sanni connected with one of the founders of the organization, Kalle Könkköla (Kalle has unfortunately passed away, but he was a true leader and inspirational figure within the disability rights and independent living movement, not only in Finland, but across Europe, and was especially active in advocating for people with disabilities in the global south and disabled refugees). Sanni says, “Kalle had a knack for noticing people, especially disabled people, who have something to give.” Kynnys was in need of an editor for their magazine, and Kalle asked Sanni if she would be interested in the position. Sanni confidently replied: “Well, would you like to pay me?” Sanni got the job, and after working for a while with the Kynnys team, she realized they didn’t have a communications worker, and were doing everything themselves with a small team. Sanni proposed the idea to be their communications officer, and eventually she crafted her own position within the organization. As she says, “it was my good luck that I got in there at the right time.” As Sanni continued to work with the Kynnys team, she gradually noticed “hey, these are cool people.”
Sanni at the Annikki Poetry festival 2022 (taken by Ville Kurki)
Sanni says working at Kynnys significantly changed her outlook on disability issues and her own identity as someone with disabilities. As she puts it, “It wasn’t as if I would’ve known anything about the disability movement, or been an out and proud disabled person… I just thought it’s one part of me and that’s it… But, once you start to work in Kynnys, you quickly notice the social and human rights issues related to disability and the problems… So, on one hand you see all the problems, and on the other you meet all these cool people… And you get to have this proud moment of: ‘hey I’m disabled, and that’s an identity and that’s a cool thing!” Sanni began to recognize how the work of organizations like Kynnys, and past and present disability activists had advanced the disability landscape in Finland and impacted her own life and opportunities: “Kalle was such a force, and because he and the previous generation had made all these things, I suddenly understood that: ‘oh, I wouldn’t have had any of these things, any of the assistance, any of the equipment, any of these rights without these people who really got their hands dirty,’ so my respect for the disability movement rose quickly.” Sanni has now been working with Kynnys for over 16 years, and has become a strong voice in the disability advocacy space in Finland, often speaking and writing pieces for media outlets about disability issues. Sanni wishes to see more diverse representation of disabled voices in the media, though, and believes that especially voices from people with intellectual disabilities and/or under-represented groups and disabled people from lower socioeconomic backgrounds should be included within the conversation on disability, inclusion, and independent living. “We need more ambition in disability progress in Finland,” Sanni declares, “there is an attitude in Finland that the disability situation is ‘already the best’ or ‘good enough’, but working in Kynnys you know how the situation is still far from perfect, and we need to keep fighting.”
In addition to working as the communication officer for Kynnys, Sanni is also a writer and professional poet, with three published volumes of poetry. Sanni’s poetry is a reflection of herself and her life, and, as she says, “my poetry doesn’t only focus on social or disability issues, but I don’t avoid talking about these issues either… I want to talk about issues of my real life.” Sanni has been writing since she was 14 or 15, and she says poetry always resonated with her: “It’s always been poetry for me… I’ve got a short attention span, so I’m not going to write a huge novel.” Sanni’s third book of poetry has been published by the largest publishing house in Finland, and she is currently in the process of publishing an English-translation of the book. Sanni also has connections with other Finnish artists who discuss issues of disability, such as Jenni-Juulia. One video piece that Sanni worked on together with Jenni-Juulia was featured in the Venice Biennale, a bi-annual art exhibition in Venice, Italy that has been referred to as the Olympics for the art world. Writing acts as a way for Sanni to express her talents, and break past disability stigma or employment prejudice. As she says, “it’s not an issue as a writer to have a disability. If I write a good piece, I write a good piece, nobody asks: ‘oh btw, do you use wheelchair?’” Sanni certainly hasn’t chosen her career path for the money, though, and she tells with a chuckle: “I’m sometimes laughing because I work in the disability field and in the culture field… it’s like from every direction they are cutting the money.” But, Sanni is passionate about writing and art as a way to discuss important social issues, such as disability, and get across the message of the independent living movement in an evocative, moving, and universally understandable way. As she declares, “I know how to write, that’s the thing I like to do in any form, so I will always be writing something.”
Sanni doing a public reading of her poetry at the Outsider Art Festival
I also asked Sanni about her own experiences with travelling and adventure. “I’m kind of a neurotic, safety-minded person when I travel,” Sanni says, “so I have all these plans, and of course something doesn’t go as planned, and that’s my big adventure, like: ‘oh no, we didn’t catch this train on time.’” Sanni has done train travel around Europe with her friends, as well as traveled to Bosnia and Kosovo with Kynnys. Sanni herself doesn’t feel as if she has many big, dramatic adventure stories from her travels, and rather she recounted stories from Kalle, who himself used a respirator and required 24-7 personal assistance, and still made brave trips to areas within Syria and Africa to fight for the rights, safety, and well-being of disabled refugees in these regions. She says that because of knowing people like Kalle and hearing his experiences, “I’ve learned to not over-dramatize my own big adventures.” Instead of traveling, Sanni thinks she has made her biggest and bravest leaps out of her comfort zone with her writing and poetry. “For me, the bravest thing I’ve done is related to things I write about… I can write to the national newspaper or go on TV with my face and say you are doing this and that, or you are not respecting human rights of disabled people, and that’s brave. That’s a thing I can do because I can write. I can express myself and I’m good at that… So maybe that’s more of the Daredevil stuff for me actually, than when I’m traveling somewhere.”
Thank you so much Sanni for sharing your personal story with me. It was a pleasure to learn more about your work with Kynnys and your poetry, and I can’t wait to read your third poetry book once it’s published in English! As Sanni mentioned, it is unfortunately a challenging time for many human rights organizations around the world, especially those related to disability. With backsliding in rights and inclusion, budget cuts, and an atmosphere that is increasingly unfriendly towards diversity and human rights, now more than ever, it is important to support the work of organizations such as Kynnys, ENIL, and other independent living organizations around the world. As Sanni elegantly puts it: “I think we would all hope that we lived in a world where Kynnys (Threshold association) and such organizations wouldn’t be necessary, but I don’t think it’s going to be anytime soon.” Please support my fundraiser for the European Network on Independent Living (ENIL) at the following link: https://gofund.me/e2702b31