March is Developmental Disabilities Awareness Month
March is Developmental Disabilities Awareness Month. This month, guest blogger Emma Barker reflects on her experiences in the following blog post.
The following blog post was written by guest author Emma Barker. Emma is a queer jeweler from the Cleveland, Ohio area with Spinal Muscular Atrophy. She spends her free time with friends, cats, and bad TV.
Time to practice our best “beggars can’t be choosers” shrugs of somber concession as we celebrate Developmental Disabilities Awareness Month this March. Awareness is a nice idea, but it’s the lowest rung on the ladder: a necessary step, but by no means the pinnacle of inclusion.
How can “awareness” be something we hope for if it’s the bare minimum? Firstly, awareness isn’t easy. Everyone has their own struggles, and it’s difficult to add possible struggles of others into the jumble of things to worry about. Awareness is a goal also because it’s a step above where a lot of people with disabilities find themselves at — the ground level, tolerance.
As a somewhat politically aware, openly queer preteen, the idea of tolerance was taught as the be-all and end-all for the LGBTQIA+ community (at least it was at my Ohio elementary school in the 90s). I remember making posters calling for tolerance and arguing with other (only mildly aware) kids that what we needed was tolerance. It feels absurd. It hits the same nerve of nonsense that “awareness” hits now.
According to the CDC, “[A]bout one in six children in the US have one or more developmental disabilities or other developmental delays.” The sheer number of people with developmental disabilities makes a lack of awareness nearly impossible. Most people know that developmental disabilities exist. There’s awareness, and it’s often quickly followed by a desire to care but with a lack of understanding about where to start. At worst, it’s followed by apathy.
Beyond awareness, we need understanding. It’s nearly impossible for the average person to know every barrier people with different kinds of disabilities face; the list is long and varied. I don’t expect someone to know how steep of a ramp is safe, for example, I’m just hoping for the understanding that I might require accommodations. And here I find myself, asking for a small improvement but never the ideal improvement. I’m left near the top of an ableist ladder metaphor, one step away from the goal. It’s ingrained in many of us to appeal for the scraps, for fear we ask for a whole dinner roll and get nothing.
Understanding someone has barriers to access doesn’t necessarily mean much without empathy. Understanding and caring is what any disenfranchised group member (or human in general, for that matter) deserves. Caring about what someone needs and a desire to include them is what would truly make a difference for those with developmental disabilities.
It’s important to note that empathy can be misconstrued as pity, and that is the last thing we need. I believe pity comes from one of two places, neither of which is a place malice. The first is caring without empathy or understanding. It makes someone feel sad but requires no introspection or effort. The second is a bit more selfish, with a sadness that’s brought on by fear. The proverbial “there but for the grace of God go I” comes to mind.
Disability, especially physical disability, can often be associated with a catastrophic life event (accident) or from the natural (but feared) process of aging. I think this fear causes discomfort that eventually leads to pitying statements said to the person with a developmental disability. I’ve had my share of pity from strangers. I have to remind myself that it can be caring but ignores the golden rule (and empathy). Most of these statements would not occur if a person thought about whether they’d like someone speaking to them that way. Pity often feels patronizing, and no one likes to be spoken to that way.
It doesn’t mean you can’t speak to someone with developmental disabilities about their disability or something related to their disability. Disability is not taboo when it’s confronted with empathy. For example, at a cat café in Tremont, Ohio, there’s a sign about watching where you step, but instead of saying “watch your step” the sign said, “Watch your feet and wheels.” This made me feel included, but an even more important aspect of inclusion was their portable ramp that they happily took out for me. They turned their empathy and understanding into action to help me have the same access as those who are able to use steps.
On the other hand, if the person apologized for my state of being disabled or praised me for my state of being disabled, I wouldn’t like that. I had a particularly persistent stranger come up to me admiring the fact that I was out of the house, and even went so far as to say, “Look at you, sitting up all straight.” I like admiration as much as the next person, but verbal pats on the head feel empty and humiliating. Empathy, conversely, makes me feel seen and understood. Empathy drives a desire for inclusion.
It’s not easy, but it’s important to use awareness to lead to inclusion with empathy and understanding. Don’t pity those with barriers to accessibility; work to make those barriers less of an issue. I’m inviting you to do what you can in your daily life, with your friends and family, at your school, in your workplace, and/or in your community. If everyone did that, life would be a whole lot easier, and it does start with awareness.
Learn more about Developmental Disabilities this month and all throughout the year:
· Centers for Disease Control and Prevention–Developmental Disabilities