Safe, connected, and supported
Reexamining assumptions so we can create a more inclusive and accessible world
I was recently messaging with my whats app pal (like a pen pal but no pens or stamps involved) about a therapist who may have been shocked by how many hours an unschooled neurodivergent kid spent on screens each day. It made me think about the many assumptions we all make about what is best for ourselves and others. I know that I have mistakenly and often assumed that what other people needed or had the capacity for was basically the same as what I could do.
When you don’t really know someone who has different physical, emotional, or neurodevelopmental needs and capacities, you may not understand that there are very different ways of moving through life. In the case of therapists and screen time or doctors and kids who can’t leave the house, most of these professionals have learned what are currently called best practices which might work for the majority of their clients. But supporting someone who needs a different approach can require the deep and often painful work of reexamining assumptions and expectations because they don’t actually work best for everyone.
I recently read, I Will Die on this Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World by Meghan Ashburn and Jules Edwards, two moms with Autistic children who explain their experiences both from the perspective of an allistic (not Autistic) mom and an Autistic mom. They emphasize the importance of parents of Autistic kids learning from actually Autistic people, they include the perspective of other Autistic people, and illustrate some of the huge challenges of living in an ableist world.
The authors describe the medical model of disability which sees disabled people as broken and flawed with differences and challenges that need to be fixed. This worldview assumes that those who can’t meet the expectations of dominant society must be taught or coerced to change so they can fit in. Often this approach comes across as a beneficial way to help people safely and happily exist in our world, but it ignores the needs of individuals and assumes that the people whose brains and bodies work differently are the ones who must squeeze themselves into a shape that fits mainstream society. If they can’t, they are often left out.
The authors highlight the social model of disability which prioritizes making sure that everyone has accessible ways to connect with and be in the world. This approach doesn’t assume that disabled people are the ones who need to change but believes that society should be responsible for including and supporting all people. It gives us the opportunity and responsibility of remembering that everyone is different and has different needs for accessibility and inclusion. It makes space for us to find our own unique approaches to life and reminds us that we can take time to enjoy our children who don’t fit the mold without needing to fix them or always worry about their futures.
Sadly, the possibility of living in a world where everyone is accepted, supported, and included just as they are is quite revolutionary. As a parent this idea seems both completely obvious and incredibly difficult. We want to show our kids that we love and support them no matter what, but we also feel the responsibility to help them be their best selves and give them opportunities to grow and thrive in a society full of biases, expectations, and judgement. Again, I shouldn’t assume that this is everyone’s experience or perspective, but I as much as I adopt a low demand approach and work toward acceptance, I still worry that I’m not taking the right actions or finding the right solutions
For some of us, it can take a lot of time and unlearning to begin to meet our kids where they are and fully accept who they are instead of focusing on ways to keep moving forward, improving, and squeezing them into the shape we envisioned or hoped for. Even if I don’t really believe them, these messages about what success and failure look like in our capitalist system have infiltrated my mind and I can easily forget that helping someone feel safe, connected, and supported matters infinitely more.
While I firmly believe in the importance of exploring the ways that work best for each individual, I do not have the experience of living with disability. I have moved through life with so much privilege that I could easily overlook the things that may have been unfair, too hard, or not accessible to others. Reading I Will Die on this Hill reminded me how important it is to listen to and learn from the people with the lived experiences and to amplify their voices while we work to support our families and communities.
Warmly,
Anna