“I’ve always had this, this disability identity of sorts… even if I was the only disabled child in school, I always had the idea that I have the same rights as everybody else.”
Meet Emma Åstrand, the International Coordinator for STIL, founders of independent living in Sweden, and providers of not-for-profit personal assistance. I met Emma in Stockholm, and I learned so much from listening to her background and personal story. From the beginning, Independent living was a big part of Emma’s life, as she says, “I was born the same year that personal assistance was formalized into Swedish government policy, so I’ve had personal assistance almost my entire life.” Because of this, Emma says, “I was able to live at home, go to a regular school, and do stuff that every other kid does.” Both of Emma’s parents were very political, and her father’s job as a musician led their family on many trips back and forth to the USA. Emma says these travels to the states had a big effect on her, as she felt more seen and empowered, and less different as a person with disabilities on her visits to the US. As she puts it: “I think that the periods in America helped me a lot. I didn’t see myself as different as a small kid, and I had this idea that anything is possible.” Disability advocacy was also always a part of Emma’s life and childhood, as her mother worked for over 20 years in a governmental agency for people with visual disabilities and improving accessibility to information for people with visual impairments and dyslexia. In conversations with her mother, Emma realized that even though her own disability made some things harder, her ability to read and understand information gave her more power and control over her life and decisions. Emma also gained a sense of solidarity knowing other people with disabilities were facing their own barriers. “To have this understanding,” as Emma says, “that I’m not the only one facing stuff, there are other people, and we need to fight together.” Emma was always passionate about political issues, not just about disability, but also LGBTQ+ rights and representation as well as other social issues, forming a strong spirit of personal independence, self-confidence, and a desire to speak out on issues she cared about. As she puts it, “Yah, I was a very angry teenager… I think that helped a lot!”
Emma recounted one story from her childhood that can demonstrate what independent living, and having choice, control, and responsibility over one’s life is all about: “I remember, when I was 7 years old, I needed a new personal assistant, and my parents said: ‘Emma, you have to be a part of the interview.’ I was like, ‘but I don’t want to’, and my mom said: ‘you have to interview these people because we can’t make the decision for you. It’s your assistant.’… In the end, It was a choice between two people that we interviewed, and I wanted one of them. My mom asked: ‘why do you want that person, you have to be able to argue for it, tell me why.’ I said: ‘well, she’s cool. She has a cool hairstyle.’ My mom just said, ‘yah fair enough.’” Emma thinks her parents instilling these values of independence and responsibility over her own life and decisions played a big role in her own empowerment as a person with disabilities. Unfortunately, though, Emma knows many friends and colleagues with disabilities that would tell very different stories, being excluded or not involved in important decisions for their own lives. Our conversation touched a lot on the theme of ableism, and how ableism can not only restrict people with disabilities in structural or social ways, but may also become internalized, with people with disabilities themselves losing their confidence or feeling incapable of taking on certain responsibilities in their lives due to being persistently excluded from decisions or never getting the opportunity or support to live independently. A big part of the mission of organizations like STIL and ENIL is battling this ableism, both external and internalized, to ensure everyone with disabilities has the support, assistance, and self-confidence to live independently.
Emma’s childhood already had a lot of attitude
Emma started working at STIL during the pandemic, and initially got connected with the organization through one of her best friends, Tobias Holmberg, the current co-chair of STIL. Emma and Tobias met when she was 14 years old, and Emma says he was her first other friend who used a wheelchair. “It was a bit scary at first,” Emma says, “because I was so used to being the only person in a wheelchair.” Emma and Tobias created their own podcast (Full Rulle) about independent living (check out their amazing highlight episode of the podcast in English here), and they took their pilot episode to STIL hoping to get sponsorship. On hearing the pilot, the financiers at STIL told Emma and Tobias: “Oh, we will buy this!” Emma has also done work in publishing and freelancing, as well as has a master’s degree in theoretical philosophy, and when she started working at STIL, they needed someone to write their booklet on intersectionality and ableism. Emma said: “I can do that.” Now, Emma works as the international coordinator of STIL, managing collaborative projects with organizations from other countries. Recently, Emma had a conversation with a disability organization in South Korea, sharing ideas and approaches for how to combat ableism, implement personal assistance, and promote independent living across diverse cultures and country situations. Impressively, Emma and one of her friends and colleagues from STIL also own their own small personal assistance company, and Emma utilizes her own company for her assistance, giving her the complete independence and control to be her own supervisor over her life.
Emma working and recording for her podcast
Emma’s podcast Full Rulle, sponsored by STIL – Check them out!
As all of these interviews are connected with my own big adventure to cycle from Helsinki to Cape Town, I’ve also been asking each participant about if they have a story of a personal adventure they’d be willing to share. Emma took a moment before answering, but then pensively said, “I mean it’s easy to talk about travels, and I have the privilege to travel a lot… but, I think a more introspective or personal adventure would be the pandemic… of course the pandemic was awful and we never want that to happen again, but at the same time, for me as an individual, I never had as much of a community as I had during the pandemic.” Emma and a group of her friends were able to form a strong sense of community and camaraderie even through social distancing, as she says, “me and a couple of friends, we weren’t able to meet up, and all of us were in the risk groups… so, we had these Corona-dates on Zoom three times per week… We made cocktails and talked and played games.” Beyond being a way to maintain social connections and have fun with friends, the online meetings were also powerful to work through intense feelings surrounding the severity of the situation for the world and themselves, “It was really fun, but at the same time, things got so real in a way, because all of us were facing this idea that ‘we don’t know if we’ll survive the virus’… Before the pandemic I had never felt that kind of connection with a community in that way.” We also touched on some of the ways the outcomes of the pandemic have actually led to some benefits for people with disabilities: “After the pandemic, things have gotten so much more accessible,” says Emma, “People with disabilities are able to do the same things as everyone else or get jobs that they couldn’t before due to online resources.” Of course, Emma recognized and certainly did not diminish the devastating toll the pandemic took on society as a whole, “It was of course awful to face the pandemic, and see what happened for some elderly people or people in home care… people died due to that, which is really another obvious reason for independent living.” Thankfully, Emma and her Zoom friend group are healthy and made it through the pandemic ok, and Emma had touching reflections on how the whole experience impacted her: “To come through that together with people, you know each other on a completely new level… It was a whole new way of living together, I would say… It was a totally different lifestyle and experience… I’m a new person after the pandemic… When I look back when I’m 80 years old or something, that will always be a time that I remember.”
Emma’s Covid lock-down countdown from their Zoom get-togethers
Thank you so much Emma for sharing your impactful and educational story with me. I so admire your empowering attitude, self-aware humor, and thoughtful reflections on adventure and personal growth. Unfortunately, the issues of ableism, social and structural exclusion, and lack of opportunities and independence of people with disabilities are still very strong within the society, and the situation is getting worse for many people and communities with disabilities around the world. Please consider donating to my fundraiser for the European Network on Independent Living (ENIL) to support the rights and empowerment of everyone with disabilities to live full independent lives as equal members of society: https://gofund.me/e2702b31