Emma Johansson is from Sweden. She chairs STIL – the Stockholm Co-operative for Independent Living and works for the municipality.
What is your personal experience of disability?
I have lived with my disability my whole life. I define myself as disabled and feel very at home within the disability community and culture. I am politically active on issues relating to those of us who are disabled, and in my work, I work with issues relating to disabled people at municipal level. Much of my life revolves around these issues.
How did you discover the Independent Living movement?
I wanted to manage my own personal assistants and I found a brochure about STIL. I remember my first visit to STIL´s office and how inspired I was that there were so many disabled people who worked there. It felt nice for once to be in the majority.
Is there an area of Independent Living that you are especially interested in?
What is so appealing about Independent Living for me is that it is an ideology on both personal and political levels. For me, IL means that I see myself in relation to the society I live in. I see myself as a citizen with rights and obligations. I see myself as an individual who can take responsibility for my own life and who can have power and control over my own live. I see myself as independent and autonomous despite a physical dependence on others. For me, IL is a bit like a religion that is very alive and present in my life, both in the small as well as in the larger aspects of life.
What appeals to me most about IL is that I am the expert on me and what I need. Peer-support is important as it strengthens me on an individual basis.
Who has influenced you the most, and how?
Many people from the Swedish Independent Living movement such as Adolf Ratzka, Susanne Berg, Jonas Franksson, Bengt Elmén, Helena Karnström and Jamie Bolling have taught me a lot, both on a personal and political level. But I would have to say Erik Ljungberg. I have a tendency to sometimes set limits for myself, mainly when it comes to traveling. This is when I find it hard to let go of control and I feel insecure. In a conversation once about trips Erik said: “You know Emma, you can´t have control at all times.” Erik was a person who had traveled much and a person I looked up to so that meant a lot to me and now I try to let go of control when I need to. Erik was a person who, when he had his civil rights violated, took personal risks such as to stop public transport in Gothenburg. To do things like that takes courage and that I do admire.
Of what personal achievement are you most proud?
When I was eighteen I got a disability pension and had it until I was about 25 years old. It was not what I had dreamed of when it came to my future. Those were difficult years that led to passivity, depression, and I felt that the future was really hopeless. It really felt like I had no control over my life. In 2005, everything changed for me when I got a job in my home municipality, became a member and Board member of STIL and started to manage my own personal assistance. I remember how I felt then, that my life evolved and that it could only get better and better. I am proud that I took all these chances and challenges.
I am proud that I now have control over my personal assistance so that I can live my life on my own terms. Then I am also proud that I am a grown daughter to my parents and that together we fixed the process of liberation/growing up in a good way.
Do you have a favourite saying or proverb?
Human rights are not something you get. You take them.
What motivates you to get up in the morning?
To learn new things and develop. The feeling that I am involved in shaping the society I live in instead of sitting at home and whining about things that I don’t like.
What do you like to do when you’re not working?
In my spare time I most enjoy being at home because I travel a lot due to my work and my duties as chairman of STIL – Funders of Independent Living in Sweden. I have a big family so I love to spend a lot time with them and I love to babysit for my nieces and nephews. Otherwise, I enjoy being with friends. I love the movies and go often and also like listening to music, concerts, gardening, interior design, books and cooking.
If you could invite anyone to a dinner party, who would be your ideal guests?
If I could invite whoever I wanted for dinner it would have to be Winston Churchill, Jane Austen, Martin Luther King and Sylvia Pankhurst because all four were phenomenal with words and people who have fascinated me ever since I was a teenager.
What advice would you give to disabled young(er) people?
Make sure you create your own life where you do not depend on your family. Make sure you create an adult relationship with your parents. By that I mean you have to learn to take responsibility for your own life and the consequences of your actions, both the good and the bad ones. In an adult relationship with ones parents, it’s about the change from you being the one that is cared for to being the one who can help and support others. I think that it takes time to grow up and you make many mistakes. It’s okay to make mistakes, even good, for it is these things you learn from. Strive not to be “normal” and like everyone else, be proud of who you are.