Meet our Nordic Fellow (special relation) Jenny Lindström Beijar
Jenny is designing a new methodology to enable families of children with disabilities to celebrate their identities, build friendship networks, and exercise their sense of agency.
Her Changemaker journey
Jenny has sought solutions to the problems around her since she was a child, and she credits her father and grandmother for inspiring this journey. Her grandmother’s devotion to celebrating everyone for who they were also modelled an inclusive ethos that Jenny would soon make her own.
Her conviction outweighed the pressure to fit in and her determination to fight for justice would grow at university and beyond.
When Jenny’s first child was born with Down’s Syndrome, she felt a missing piece of the puzzle was found. She felt joyful and wanted others to feel that way, too. But she soon found that the language used by her doctors and nurses was pessimistic, even pitying. She also realized that other new parents she and her partner socialized with focused on developmental milestones for their children that they did not. They soon sought out and connected with other parents of children with Down’s Syndrome and other disabilities. Affirmation they soon felt helped to nurture the sense of belonging she had craved.
What excites Jenny most about the next step in her changemaking journey is the role she sees people with disabilities can play in a world increasingly focused on creativity, new solutions and innovation. She is confident her daughter and others like her will help to drive change in terms of development of new products and services under the concept of ”universal design”. Design thinking has changed the way companies work in many ways and through involving users with disabilities, their families and friends, companies will be able to take a lead in offering truly universal solutions; solutions that are appreciated not just by a majority or by niche segments - but by everyone!
Approximately 5-15% of all children have an either visible or invisible disability. The way people with diagnoses and disabilities, and their families, are framed in conventional media many times end up in interviews and stories with an either pitying or hero narrative. An increased focus on research and medical conditions also tend to create siloes where organizations split up related to very specific diagnoses. This development makes it difficult to build a community with a strong common voice for families which many times have a lot in common - and who could be helped by getting support from each other.
Furthermore, there is an increase in pre-natal genetic testing and many times information about termination is provided when test results are shared. In that sense the message sent from society is clear: these diagnoses are bad news for parents and babies alike. This feeds a sense of isolation and ’other’ness - both from those who fit the conventional definition of ’normal’ and from each other - just at the point when the families need support and a sense of belonging the most.
Jenny's Our Normal model includes Sweden’s first digital platform through which families can share their stories and daily experiences, connect one-on-one and build community, as well as recommend businesses and public spaces that both accommodate and embrace them. The fact that 60 separate diagnoses are currently represented amongst Our Normal users helps to reframe traditional narratives that link one’s identity with the specific disability experienced.
Our Normal empowers families of children with disabilities by building friendship and advocacy networks, challenging stigmatizing language and imagery, and partnering with traditionally siloed disability rights organizations to generate frame change around what ‘normal’ looks like.
Our Normal is also shifting the language and imagery used around disability by focusing on sharing stories where daily life topics, situations and experiences are in centre rather than specific medical conditions or information.
In the next ten years, Our Normal aims to become an international digital movement that cuts across traditionally siloed landscape and partners broadly and more formally cooperate with other disability rights organizations as well as companies and corporations.
Jenny wants the Our Normal voice to be seen as a positive force that can provide a solution-oriented view on how to make change happen and how to put inclusion higher on the agenda. While the UN Agenda 2030 focus on ”No one left behind” she also wants to emphasize the importance of seeing the next step as well - that ”Everyone has a place in going forward”.
She is eager to build a vision of a brighter future and as one of many topics she believes there is still a lot to explore regarding the role that her daughter and others like her, can play in a world increasingly focusing on artificial intelligence. She predicts that expertise and competences like the capacity to hyper focus or emotional intelligence will be seen in another context - and valued as new creative solutions to the challenges that machine learning will pose to our society, as well as our understanding of humanity.