Dig Deeper than Disability Awareness
May is awareness month for my disability, Osteogenesis Imperfecta or OI, and several others. With the close of April, I’ve smiled at a few posts by #actuallyautistic friends marking themselves as “safe from Autism Awareness month”. I also tend to dread October, which is Little People awareness month. No matter what the disability type or focus, almost all awareness campaigns look about the same:
They repeat a set list of symptoms, usually focusing on what nondisabled people find interesting but not uncomfortable. For my disability, there’s a heaping dose of awareness around our blue sclera (the whites of our eyes tend to have a blueish tint). I guess it’s sort of interesting but this fact actually has literally zero impact on my day-to-day life. There’s not much tolerance in awareness campaigns for symptoms or aspects of life that make people uncomfortable, like everyday ableism, descriptions of pain, and how sexuality intersects with disability.
Sometimes “facts” have an unwritten agenda. For Little People awareness month, one of the most repeated facts is that 80% of little people are born to average-height (AH) parents. Most interpret this as “Most people who have LP kids were completely surprised and had no idea what to expect.” I wish we talked about the other side of this-what it’s like to be raised by parents who won’t be able to directly share experiences of that identity and why so many LP adults want to, but for various reasons- don’t have families of their own. The 80% average height stat allows for validation of a largely AH-centered dialogue and leadership of our LP organizations. It’s a reminder of power dynamics-you’re still the minority-even in your own community.
Awareness sells. The growing reach of awareness campaigns has fueled a significant opportunity for nonprofits to fundraise, further confusing the actual aims of these efforts. The general public want light and fluffy awareness. We see this in color schemes, ribbons, and slogans. It’s hard to leverage the entrepreneurial spirit in educating around involuntary sterilization of disabled people or even on the positive side-true “disability gains”, where disabled people aren’t just doing as well at something as nondisabled people but are actually achieving better outcomes and demonstrating strengths.
For all these reasons and more, I’m kind of a kill-joy about awareness campaigns. Too often-they perpetuate ableism, whether intended or not. They do have a place and I don’t wish for a complete end of awareness. I especially enjoy seeing youth-led efforts and know they represent a bridge for many into advocacy and even pride-building. If more people were watching for the above-mentioned red flags and willing to call them out when they saw them, awareness campaigns and their impacts could be improved.
Several years ago an Australian with OI, Jo Ragen, provided an incredible example of disability-centered awareness in her creation of Wishbone Day. Its spread has been impressive and leadership has tried all that it can to discourage leveraging the day for fundraising, as that addition often pushes people into a charitable model of thinking about disability. There are definitely still examples of awareness activities that embody the spirit of Wishbone day but there are also many examples of co-opting its intent.
Awareness may be a start but it should never be the end. As a society, we expel too much energy and money on awareness of parts of disability that are surface-level. You’ll never experience the true beauty, potential, and pride within our community with a superficial approach. If you celebrate awareness this month, I encourage you to watch for red flags of perpetuating ableism and make sure to dig deeper and show that in your words AND actions.
