My name is Hillevi Larsson. I am a 20 year old girl with a lot of things going on in my life. Since January this year, I live in an apartment of my own in southern Stockholm. I live close to my family so I get to meet with them almost every day. This spring I graduated from high school and now I continue studying on Lärvux and working with something we call daily activities.
What is your personal experience of disability?
I have got something called Cornelia de Lange Syndrome. This means that I have had a bumpy road getting to where I am today. Ever since I was born I have struggled with infections, ammonias and had difficulties eating even though I love food. I haven’t been able to swallow since my oesophagus is enlarged. If I drink water or eat soup I risk drowning. I’ve been through many surgeries and have had difficulties but those have not stopped me. I’m what my name means – a fighter. My mother always tells me that it was me who chose the name and not her. I’m not sure I know what she means by that but maybe she’s right anyways.
I communicate with sign language and through pictures. My hearing is barely functioning but I still enjoy listening to the sounds I can hear around me. I use a wheelchair, and like other people with CdLS I’m a great personality in a small body. My small body is quite useful because it’s not hard maneuvering in the move and walk program.
My vast disabilities make me need support within some areas. My personal assistant from the JAG user cooperative enables me to live my life by my preferences just like other people in my age.My legal guardian and I shape the assistance the way I want it. I decide who will assist me, how I want to be assisted, when I want to be assisted and where I want the assistance to take place.
What personal achievement are you most proud of?
I would describe myself as a proud girl who feels content about the many accomplishments I have made. For example, I felt very bad about the move and walk exercise at first since it was hard work and painful. But after a while, I discovered how much it actually helped me to think better, to move better and feel better. By not giving up I’ve been able to live a better life.
How did you discover the Independent Living movement?
To me it has always been natural to live an independent life. I was only at the age of four when the right to have personal assistance became reality in Sweden. This means I’ve always had a good life despite the difficulties about my health issues. My mother says that she has known about the independent living movement for a long time, but I first heard about it once I became a member of JAG.
What makes you laugh?
It doesn’t seem like most people understand all of the joys I have in life. Have you ever really studied a washing machine before? No? Then you probably haven’t noticed how fun it is watching it twirl and bounce. When things and people jump around I get all crazy and giggle and laugh which makes everyone around me laugh too. I have to admit, I think it’s just as hysterically funny when people fall or if somebody drops a plate on the floor.
What makes you angry?
I get sad and angry when I hear people talk about me instead of with me or when people are mean for other reasons. I also get quite cranky if my food isn’t served fast enough.
What do you like to do when you’re not working?
When I’m not working I like to hang out with family and friends in restaurants and cafés. Even though
I am social I like getting lazy sometimes too. This summer I went to Copenhagen in Denmark to take part in a world congress about CdLS-syndrome. It was great to meet all these people from around the world.
Who has influenced you the most, and how?
I can’t choose just one person who has meant the most to me since I have so many people around me who has been engaged to me and my life. My family has always been important to me though.
I need my assistants to be professional and know the difference between personal and private issues. I’ve made friends for life with many of those who have been assisting me through the years. My brother who is 18 has now begun working with me as my assistant. It fits us perfectly since we know each other very well. My mother is my legal guardian now that I am an adult. She supervises my personal assistants and helps me with anything you can imagine. She is a great resource to me when I need to contact authorities or when I’m about to do economic errands through insurance companies or the county hall.
What motivates you to get up in the morning?
I love mornings, the feeling of knowing that breakfast awaits makes me wake up with a smile on my face and it motivates me to get up.
If you could invite anyone to a dinner party, who would be your ideal guests?
I often invite friends on dinner. I love to have parties and serve food. The other day I invited home mom on a three-course dinner.
What advice would you give to other young adults with a disability?
Remember that you have the right to be as equally treated as everyone else and that you- and nobody else is the star of your own life. You are the only one who knows how you want your life to be.