Social media has for a long time been demonised as ruining young people’s mental health, creating unrealistic body image standards and being a platform where bullying is rife. And all these things are true, but it feels like tunnel vision, forgetting that social media is often a lifeline for disabled communities like mine. For a long time, it was the only place I saw disabled people represented, could share in my daily joys and struggles with a community who truly understood and metaphorically shouted from the rooftops about the issues which were affecting our community but failed to get mainstream news coverage.
My name is Louise, I am 21 years old and am passionate about building a world which truly works for autistic people. I founded my Instagram account in 2018 to share my journey as an autistic person living in a world not built for me, to create ripples of change and to empower other autistic people to understand themselves.
When I was diagnosed as autistic, the information that I was given focused heavily on the deficits of being autistic; it was portrayed as something tragic. The information was given from an external perspective of what autism is like - a perspective that failed to grasp the rich and intricate internal experience of being autistic. Often the information was aimed at parents, carers or professionals, rather than directly to autistic people. This made me feel misunderstood and isolated.
I realised that I had to create change to ensure that no other autistic person felt the same way as I did. This led to the creation of my Instagram account @neurodivergent_lou, a space to share the authentic experiences of being autistic from the inside. To share the joys and struggles, to challenge harmful stereotypes and champion a better world for disabled people. My Instagram page started off with me sharing to a couple of my close friends but has now grown to reach over 4 million people a month, which highlights just how much of a need there is for disabled voices to be heard.
Before I started social media, I didn’t know many disabled people and it can feel incredibly isolating. Being disabled never came with a guidebook and feels like a lot of muddling along through trial and error. Disabled people, for various reasons may not have the luxury of being able to have friendships outside of the online world. Social media can be a place to feel integrated and accepted. To be a sanctuary away from existing in a world which wasn’t built with us in mind.
Social media has a vital impact on the lives of disabled people. My account, along with others like mine, are now included in information packs for newly diagnosed autistic people. There is such power in hearing directly from the autistic people who have expressed how social media has allowed them to feel less alone or advocate for themselves in daily life. As disabled young people, too often our voices are not heard on issues which are important to us or we may lack autonomy over our daily lives. For too long, our stories have been told for us, not by us. Social media is a chance to take back the narrative and a way to amplify our own experiences.
There needs to be a fundamental shift in how we view social media, recognising how vital it can be in shifting the power dynamics for marginalised groups, in finding an inclusive community and feeling empowered to self-advocate in daily life.