“Allyship Is About Straws and Science”
There was a news article last week about a disabled woman who died after being impaled by a metal straw. I’ve posted the link below to one version of the tragic death; I chose it because it is written somewhat satirically. It was shared on a community Facebook page that I follow, and many people sort of laughed at the tone of it, and made fun of disability activists for decrying environmental efforts to eliminate plastic straws, ignoring the needs of those who truly might be endangered by metal straws.
The utter disrespect of writing about someone’s death in such a way aside, I think it’s good to see disability activists and allies pushing back. The cruelty of the comments I read highlights how much smug ignorance and selfishness still prevail, despite everyone’s cherished second careers as keyboard warriors.
Stop patrolling and policing the disabled. You are not the Brahmarshi Atri of whether people deserve to be in public spaces; whether a child who looks older should be in a stroller; whether someone really needs that special parking spot, etc. When it comes to matters about which we have only partial knowledge, please, just accept that we are all plebes like everyone else, and restrain any inner urge towards vigilantism and random educational endeavors.
This stuff applies even if we have a direct connection to disability ourselves. Families have different ways of doing things based on access to supports and assistive devices, money, community acceptance, and even degree of disability. So our job when we encounter someone being their authentic disabled self is merely this: to believe that they are doing their best. That’s it.
If the manifestations of disability make us uncomfortable, it is not the job of the disabled to reassure us, act like they are not in pain or distress, or erase themselves.
In fact, we should be celebrating that the disabled are out in the world. Be part of their support system. If you see someone struggling, step forward and ask how you can help. Say a kind word to the family. Resist the urge to talk about religion and fake science.
How do you know if it’s okay to talk about religion? If the disabled person brings it up first. That’s the only time it would be okay, and even then, if they don’t seem to be from your faith, NO PROSELYTIZING.
How do you know if it’s fake science? If it was not published in a peer reviewed scientific journal. This is less about academic elitism, and more about not using the disabled as expressions of our own fears and lack of trust in The Establishment. Our loved ones are not guinea pigs, and we owe it to them to treat them with the same right to body autonomy as anyone else. They deserve to benefit from scientific rigor; that’s where I stand, and I don’t accept for a moment that we owe it to society to be admonished for not trying every holistic option out there.
As a woman, though, I find that people do not respect my boundaries. They will hold their tongues around my husband a little better because he is a dude and a scientist. Though a random guy at a temple once approached him and told him to take A to some place in the Himalayas and he would be “all cured.” My husband’s face turned red with rage. He does not believe A needs curing, and as I said later, “We cannot even get A to fly as far as California, but Himalayas, here we comeeeee!”
If everyone were more willing to do the work to make themselves “safe,” then being out in the world would be less daunting and threatening for the disabled. Metal straws and fall risks aside, it is mostly a lack of community support that cripples our best efforts. Ableism is the default, and intellectual ableism is crushingly difficult to combat too.
Before you go out each day, remind yourself “I am an ableist. I am exhausting to be around.” Maybe that would help put it in the front of your mind, so that each interaction would be less instinct-driven and more thoughtful.