Challenging the sense of isolation that families with children with diverse abilities too often feel due to silos built by specific medical diagnoses and traditional advocacy, Jenny Lindström-Beijar has designed a new methodology to enable these families to celebrate their identities, build friendship networks, and exercise their sense of agency to model and scale a more inclusive understanding of ‘normal’ in neighborhoods and businesses across Sweden.
The New Idea
Jenny has created a new approach to inclusion that enables families with children with diverse abilities to celebrate their lives as ‘normal’ and build networks of support. Her 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, and 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’s counternarrative focuses on family life and milestones everyone shares such as birthdays and first days of school. Meet-ups and group advocacy, facilitated by these initial connections made virtually, empower families to reinforce the counternarrative about disability, building in them a shared sense of empowerment with which to effect change themselves where they live, work, and play.
Beyond enabling families, Our Normal also works with partners across sectors to change how medical diagnoses are framed and shared spaces designed. Jenny has enabled genetic testing clinics to shift conversations with anxious parents-to-be so that focus is on the community of families that will support them alongside the diagnosis. She has also activated families to advise organizations via digital panels on how to design more inclusive work and entertainment spaces, as well as how to influence their own partner organizations to do the same. Jenny partners with social media influencers, too, to shift focus away from images reinforcing unique diagnoses and the disabled in isolation and toward those that frame the experience in the context of everyday family life. Driving all this work is Jenny’s conviction that families like hers should not spend their time and energy trying to convince the majority of people to recognize their children’s abilities and rights – an endeavor that serves to reinforce the marginalizing narrative Jenny is committed to challenging.
More than 100,000 children across Europe are born with a congenital anomaly each year. And how conversations about pre-natal genetic testing and long-term medical diagnoses are framed too often creates siloes from which the affected struggle to escape. The family with a Down’s Syndrome child is separated from the family with an autistic child, and both of those families are separated from the family with a child with Fragile X Syndrome. Information about pregnancy termination is often provided when test results are shared. The message sent is clear: these diagnoses are bad news for parents and baby 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 these families need support and a sense of belonging the most.
Diagnoses-driven segmentation of families continues as children grow up. Traditional disability rights organizations such as the European Down’s Syndrome Association and National Autistic Society are, by their respective missions, tailored to very specific demographics. Meet-ups and conferences are important for support and advocacy, but the specificity driving them perpetuates for many a sense that they are different from others. This segmentation also makes it difficult for companies that are trying to design more universally welcoming spaces to know with whom to consult and plan. Social media too often reinforce the narrative that one’s disability is the primary frame through which others see and understand them. Online campaigns generate pity or seek donations. And when popular platforms such as Facebook host groups tailored to those with disabilities and their families, the sheer number of members is better suited for political campaigning than building friendships and arranging meet-ups.
Traditional disability rights organizations also tend to prioritize lobbying and policy work for inclusion and equality. While laudable, that mission also risks reinforcing the narrative that families with children with disabilities are at the margins of mainstream society and need to unite to fight for rights that should never have been denied them in the first place. The negative tinge of this message adds to the weight that families with children with disabilities already feel.
The Our Normal model empowers families with children with diverse abilities 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.
Welcoming 8,000 unique visitors each month, Our Normal’s online platform connects families by digitally showcasing their stories about day-to-day life. Nearly 600 registered users have created these profiles to date. Presenting families in this way reinforces a shared sense of normalcy amongst all users and challenges conventional social media campaigns about children who are different or need support. Family profiles also show expectant parents that far from being overshadowed by medical diagnoses, their future will involve birthday parties and first days of school and family trips and personal discovery alongside siblings and friends. And because visitors to the Our Normal platform use profiles to message and meet up with other families, friendship networks are cultivated. Families in the countryside have access to the same information as everyone else. Those living in cities can find families like theirs who live close by. Families also use the site’s Expo page to share information about businesses and entertainment venues that have proactively embraced the more inclusive understanding of normal that lies at the model’s heart. And building on the sense of agency cultivated through the site’s Expo page, Our Normal are advising companies and developers as they build and expand. Prior to the pandemic, 50 of these families helped to advise Sweden’s largest amusement park in a re-design of its new waterpark entrance and website. They’ve informed changes to Gothenburg’s Daftöland theme park, Passalen community center, and child friendly Alfons Åberg Kulturhus. The local school authority has also adapted its website thanks to Our Normal consultations. More recently, families have advised a global retailer based in Sweden on how to design more welcoming stores. These digital panels are helping to reinforce family connections and a sense of pride and agency across diagnoses. They also remind companies that more inclusively designed spaces benefit not just those with diverse abilities but also siblings with whom they visit and play.
Our Normal is shifting the language and imagery used around disability. It has partnered a genetic testing service provider to equip expectant parents with hope and inclusion alongside diagnoses. Jenny has worked with regional Centers for Rare Disease to ensure their conversations with clients avoid stigmatizing language when discussing intellectual disabilities. Her trainings highlight the fact that simple phrases like ‘I’m sorry’ when sharing testing results with expectant parents fuels negative stereotypes around disabilities, as does providing information about pregnancy termination alongside diagnoses. At least one clinic in Gothenburg has already designed a new approach to conversations as a result. And to grow Our Normal’s social media presence across the Nordics to counter conventional narratives on what ‘special needs’ looks like, Jenny is partnering with influencers such as @teckensomstod to scale a more inclusive and family-based alternative narrative. Our Normal clothing and accessories, all sold through an online shop, help to build a sense of shared pride.
Our Normal links up with more traditional disability rights organizations such as the European Down’s Syndrome Association and Inclusion International to scale its impact. Jenny has participated on conference panels to share her vision and work and notes that because these organizations focus more on lobbying than on creating space for families to develop friendships and celebrate changemaking, the Our Normal model is proving an important complement for their members. While in-person gatherings are important to the Our Normal model, its robust digital platform often proves a more convenient means for connection and support than traditional organizations’ reliance on in-person programming such as annual conferences. The Swedish National Association for People with Intellectual Disability, for one, relies on Our Normal to augment its traditional outreach and attract younger families. Jenny’s strategic goals for 2022 include at least two more of these partnerships, as well as the start of an Ambassadors program to help adapt the Our Normal model to local contexts on an international scale.
In the next ten years, Jenny expects Our Normal to be an international digital movement that cuts across traditionally siloed disability rights organizations and partners more formally with NGOs that work with adults with intellectual differences. Next steps include an expanded English-language site and a Norwegian-language site. Jenny aims for 10,000 family profiles and 100,00 unique website visitors per year by 2025 – but only if the quality of family interactions both on and off the platform remains high. Jenny also plans to help companies that have consulted with families on digital panels to use their learnings to then help their own partners design and build more inclusive spaces. This will protect Our Normal families from being overstretched and enable companies to lead change in their own sectors. As importantly, this work is creating a new funding stream for Jenny’s organization to ensure it no longer needs to rely primarily on project grants.
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. She remembers how her dad’s sense of initiative and optimism led him to found his own textile company in Älmhult – IKEA’s backyard in southern Sweden. His frequent travel to China meant she was exposed to and comfortable with difference from a young age. Her grandmother’s devotion to celebrating everyone for who they were also modelled an inclusive ethos that Jenny would soon make her own.
Jenny’s earliest changemaking memories include creating a newspaper on school holiday and selling it to local residents. Content included poetry, interviews with neighbors, and op-eds on issues such as animal rights and vegetarianism. Interest in the world beyond Älmhult motivated her, as did Jenny’s dream to work for the United Nations someday. And when she was 14 years old, Jenny joined activists to protest the treatment of animals when a circus troupe came to town. She remembers standing outside the venue entrance, gathering signatures for a petition calling for an end to circuses that used animals... all while peers carried on by seeing the show. Her conviction outweighed the pressure to fit in.
Jenny’s determination to fight for justice would grow at university and beyond. She studied social science, motivated by her desire to learn more about multiple perspectives. And when she started coursework in marketing at a top Stockholm business school, Jenny realized that she was heading in a direction different from her peers. She challenged assumptions about what economic justice looked like and, unlike classmates, questioned the status quo. She was the first in her class to run events promoting what is known today as CSR. And when neither classmates nor the instructor spoke up after peers exploited stereotypes around disability during a marketing pitch, Jenny wrote to everyone involved to explain why such behavior – regardless of economic benefit – did more harm than good. After the next class was dedicated to discussing Jenny’s complaint, peers and professor alike thanked her for speaking up. Her first job after graduation would be not with an investment bank in London or Paris but instead with an unconventional management consultancy that helped clients find their own solutions to problems rather than advise them from the outside.
Jenny had never worked with children with disabilities when her first child was born with Down’s Syndrome, but she felt her life to that point had prepared her for this next step. She thought a missing piece of the puzzle was found. The memory of her two role models – her dad and grandmother – inspired her. But she found the language used by her doctors and nurses dispiriting. It was pessimistic, even pitying. She felt joyful and wanted others to feel that way, too. But she soon found that other new parents she and her partner socialized with celebrated milestones that they did not. Their own focus was elsewhere. They soon sought out and connected with other parents of children with Down’s Syndrome. Affirmation they soon felt helped to nurture the sense of belonging she had craved.
One thing that especially excites Jenny about the next step in her changemaking journey is the role that people with intellectual disabilities will play in a world increasingly focused on artificial intelligence. She is confident her daughter and others like her will help to drive emotionally informed, creative solutions to the challenges that machine learning will pose to our understanding of humanity.