Changing the way we think of "normal" to better support and connect families of children with disabilities

Newest Ashoka Fellow in Sweden Jenny Lindström-Beijar and her organization ‘Our Normal’ connect families to show they are not alone in trying to find spaces that respect and are better suited to their children’s disabilities. Central to this process is the ability to build communities that both can be there to support each other, as well as being a speaking partner and shared voice for how to build more inclusive societies.

As an example, the site’s Expo page enables families to showcase and recommend businesses and places for family activities that are suited to children with disabilities. At the same time, families are also able to assist Jenny in advising companies on how to make spaces such as theme parks and local businesses more welcoming. 

Overcoming siloes through shared experience of everyday life with disability 

Children with different types of diverse abilities are often diagnosed early in life - resulting in an organizational landscape that many times is very split and divided between different types of support for different diagnoses. While many positive things can come with the knowledge of a certain diagnosis, there is also a risk of feelings of isolation and labelling that may come because of the perception that such conditions are different and that there is a lack of shared support. 

This common narrative surrounding disability is often one of “otherness” instead of “normal” as reinforcing this split and marginalization of groups with disabilities. Jenny Lindström-Beijar’s approach to disability is redefining what it means to be “normal” in order to support the goal of a more inclusive understanding of the concept. 

Her initiative, 'Our Normal', is humanizing disability through a web platform that enables families of children with disabilities to connect – offering support and a better understanding of how to nurture their children’s individuality. 

For instance, 'Our Normal' works by linking families through examples of their everyday lives shared on a digital platform. Approximately 600 users have already registered on the site, which has offered a shared sense of understanding and support between families who would otherwise feel alone in their struggles.  

Designing for disability, encouraging changemaking 

As a digital platform, 'Our Normal' is the first of its kind within Sweden to offer support to families caring for children’s disabilities – sharing experiences and helping other families navigate spaces that can suit a range of diverse abilities. The organization also encourages families themselves to take on advocacy roles as changemakers within their own communities. For instance, opportunities to engage in user dialogues, focus groups and utilize the power of the online community for effecting change are aspects that reflect the changemaking quality of 'Our Normal'.  

Learning how to influence organizations and create spaces that recognize children with disabilities for their rights and abilities are essential aspects of Jenny’s mission for 'Our Normal'. For example, by embracing and raising awareness around the concept of universal design, Jenny has involved the families in the Our Normal network in product and service development processes in several museums, amusement parks, retail stores and health care providers both in Sweden and globally. 

The changemaking aspect of Jenny’s work provides a model for how children with disabilities can be cared for and respected by supporting and connecting a larger network of empowered families. 

The origins of 'Our Normal'  

The roots of 'Our Normal' can be seen in Jenny’s childhood days, where her entrepreneurial spirit and focus on fighting for justice began. As a child, she was already an activist and wrote op-eds about animal rights and vegetarianism when she created her own neighborhood newspaper. She also studied social science at university, which motivated her even more to question the status quo and defend the rights of those with disabilities when she encountered negative stereotyping during her education. As Jenny’s own first child was born with Down’s Syndrome, she and her partner have experienced the importance of finding families of children with disabilities who can learn from one another. This need for belonging to a group who understands the challenges other parents experience and to create spaces that fit their children’s needs are foundations of ‘Our Normal’. 

Jenny’s initiative is shifting perceptions of disability and normality through a focus on the shared experiences of families dealing with disabilities. Such experiences are tools for support that can also function as a catalyst for re-designing and co-creating spaces to be more welcoming for those with disabilities. This contrasts with traditional campaigns that often focus on the differences and need for inclusion, which have good intentions but risk further perpetuating isolation and the feeling of being different.  

The future of 'Our Normal' is hopeful. Jenny envisions families initiating networks of organizations with similar mindsets and goals, helping to create a corporate world with a more welcoming and fair understanding of what ‘normal’ means:  

During the last decade, Ashoka Fellowship has supported leading social entrepreneurs in the Nordics by enhancing their sense of belonging as part of a broad community of changemakers. We at Ashoka Nordic are achieving this by supporting Fellows in their organizational growth and strengthening their identity, while helping to increase their organizations’ impact. 

Check out our expansive network of Fellows and recommend an Ashoka Fellow to be part of this mission.