“Independent Living means a lot to me of course because without personal assistance I was not able to work and meet my friends and live in my own home and so on… it’s very important to me to have independent living.”
Meet Jesper Mathiesen, member consultant for LOBPA, Denmark’s largest non-profit personal assistance providers and the nationwide interest organization for people with disabilities using personal assistance. Jesper was born in a small town outside Aarhus, Denmark’s second largest city. Jesper has had his disability (Arthrogryposis or AMC) since birth, and when beginning school, Jesper and his family already faced stigma, exclusion, and unfair bureaucracy related to Jesper’s disability. As Jesper recounts in a story, “When I was five years old, my parents started to find a school for me, but the municipality wanted me to go to a school that was far far away from my home because it was a school for disabled people… My father was angry, and you could not mess with my dad,” Jesper says with a chuckle, “He was a man with his own meanings… so my dad talked to the caseworker and the municipality, and asked ‘why does Jesper have to go to this school 10 km from his home?!’ ‘That’s because it’s a school for disabled people,’ the municipality responds, ‘and it’s very good for Jesper to meet other people with disabilities and learn how to cope with his life’… and then my father, he was a very purposeful man, he asked, ‘so how many disabled people are at this school?’ ‘Oh, there’s one,’ reported the municipality. ‘And what kind of disability does this other person have?’ my father asked. ‘Oh, he’s blind,’ says the municipality. So, my father said to them: ‘Why does my son have to go 10 km by taxi every morning to meet one other person with disabilities, to learn how to be disabled from someone with blindness?!… And then he’s not able to play with his friends in the area he lives’… My father said ‘no, I will not put Jesper there’… and eventually the municipality changed their mind.” After this hard-fought argumentation, Jesper was able to go to a normal school nearby his home.
When Jesper was 14, he moved to a boarding school and began receiving his own personal assistance, beginning his journey with real independent living. “That was the first time that I was away from my parents and had my own assistance, and I started to take care of my own needs,” Jesper says, “it was 2 hours from my home, so it was not easy to get my parents to come and help me, so I really had to stand on my own legs or wheels, and take care of my life… so that was really good for me to learn to live by myself.” Like his father, Jesper had a strong will and knew after school times that he wanted to live independently. As he tells, “When I was 17 years old and I got home after the school period, I said to my parents: ‘when I turn 18 years old, I will move away from you, I don’t want to live at home no more’… So, I had my birthday on the 3rd of August, and I moved on the 4th of August.”
Jesper on a museum visit with some of the LOBPA team
After finishing high school, Jesper began working as a social worker for four years. Then, in 2016, Jesper moved to Copenhagen and began working for LOBPA. Jesper had been connected with LOBPA well before beginning working for the organization, as he tells, “I have known LOBPA always, because when LOBPA was founded, the meeting where the organization was created, I participated in it.” Jesper was one of the founding members of LOBPA, and he is colleagues and friends with many of the other founders. LOBPA continues to be member-led, run and directed by people with disabilities using personal assistance themselves. As LOBPA’s member coordinator, Jesper works with individual members receiving personal assistance from LOBPA, assisting with any problems and sharing guidance and information, as well as advocating to improve the personal assistance situation for everyone living with disabilities across Denmark. Beyond his work, Jesper lives a full and independent life. “I enjoy life, I have friends, I see my family, I go to concerts, I go to football matches, drink some beer sometimes.”
Jesper participating in events and conferences to promote LOBPA
Independent living is a profoundly important part of Jesper’s life, career, and activism. As Jesper clearly puts it, “Independent Living means a lot to me of course because without personal assistance I was not able to work and meet my friends and live in my own home and so on… it’s very important to me to have independent living.” Jesper also recognizes how much the situation for people with disabilities has changed in Denmark over the last decades, especially regarding the introduction of personal assistance, and shows great respect for the previous generation of trailblazing activists and reformers. “I admire our ancestors who in Denmark made this possible, because they were fighting for freedom and having independent living… Until 1984, in Denmark it was not possible to live in your own home… I was born 2 years after that time… so it’s not that many years ago that people in Denmark with disabilities were not able to live their own lives… this should be possible for everyone to live the way you want to live!” In fact, the entire concept of disability and dependence can begin to dissolve with the proper supports, inclusion, and assistance within the society, as Jesper explains from his experience, “If I don’t have personal assistance and I don’t have my wheelchair, and I don’t have the possibility to get on a train in the morning… If these needs are not met, then I’m more disabled than I am now… but due to the fact that I have personal assistance, I don’t feel disabled that much… I have something to compensate for my ability… I’m not able to make my own lunch, but I have a personal assistant to help me with that. I’m not able to reach something that I dropped on the floor, I have a personal assistant to help me with that… but if I don’t have that personal assistance, then I won’t get any lunch, and I will drop a lot of things and won’t be able to get them.” Personal assistance also provides opportunities for employment for people without disabilities to work a job that is doing genuine good for society and building a personal relationship with someone with disabilities, that could become a close friend, it gives people with disabilities the opportunity to strive towards their own dreams and potential, opening the door for them to make significant positive contributions to the society based on their unique talents (look at Stephen Hawking as an example), and most of all, it gives the same level of freedom to people with disabilities that everyone should have, to choose, take responsibility, and determine the way we live our own lives.
Just living life…
When I asked Jesper about a story of adventure from his own life, he was quick to respond with a moving story: “Ooh, I have a lot of adventures…, I travel a lot, I always like to travel… 2 years ago, I suggested to LOBPA that we make a travel trip for people with disabilities, and last year we made a trip to Barcelona. We had ten wheelchair users and their assistants and family all on a plane, and flew from Copenhagen to Barcelona and back.” The trip was quite an undertaking, as Jesper explains, “I’m very proud of what I did, because it takes a lot of time to plan this and make sure everyone is ok. And luckily, I got lots of positive feedback from the participants from the trip… so much good feedback that we made another trip this year.” Jesper had just returned from their second trip to Barcelona three weeks before our conversation. “It was a big success also this time… So that’s also what I’m doing now: travel planner for LOBPA.” Jesper exclaims with a chuckle. “I want other people to have the same possibilities that I have had… I feel good about planning this and giving an opportunity for people with disabilities to get the same experiences abroad that I have had for many years… many people with disabilities have fear of flying, the fear of the wheelchair being damaged or the assistants not showing up and all this stuff… Of course that can happen. I also got my wheelchair damaged many years ago, but most of the time, it’s very nice to go on these trips… and I think the fear of what could go wrong is nothing compared to the experiences you can have.” Jesper tells of an experience he had when he took his first trip to the USA, “I was in New York 6 years ago, I’d never been to the United States before, it was really nice to see all those big buildings… there were many obstacles on the way to New York, and also back, but the experience over there was all worth it.” One of the participants had a particularly empowering and inspiring experience from their organized travels to Barcelona, as Jesper recounts, “We have a member who’s 55 or so. Ten years ago, he was on a bike, and he fell and broke his neck… he has not been out traveling for 10 years since his disability, because he thought it was not possible to get assistance at the airport and so on… and last year he was with us on the trip. He told me: ‘Jesper, I’m very happy that you arranged this trip because now we have courage to travel on our own’… I actually helped them overcome the fear of flying, and now they’ve planned another trip also, without my help… so I want to help everyone who wants to travel to feel this way about it.”
Group photo from the first LOBPA trip to Barcelona, led and organized by Jesper
Thank you so much Jesper for sharing your story with me. Talking with you I learned a lot about the current and past disability situation in Denmark, the importance of personal assistance, and the simple and justified desire for personal liberty that underlies the independent living movement. I appreciate your direct communication style, your work to fight for the interests of people with personal assistance throughout Denmark, and your mission to empower more people with disabilities to have the opportunity to travel and enjoy the positive experiences of seeing the world. Unfortunately, independent living is currently diminishing and being actively undermined around the world, including in Denmark, with the rights, independence, access to services such as personal assistance, and social inclusion of people with disabilities being pushed down from ill-founded economic justifications or just a lack of empathy or aversion to diversity becoming more common in the current environment of political polarization and loss of human rights. Now more than ever it’s crucial to support organizations like LOBPA and ENIL to support the fight for independent living for everyone! We all benefit when we can all choose and control our lives! Please consider donating to support the European Network on Independent Living (ENIL) from my fundraiser here: https://gofund.me/e2702b31
And remember to share and support the cause in the ways that you can. Thanks for reading, and as always…
Pedal with Soul,
-Max