The m-word’s coming back in style, apparently!

Voor een Nederlandse vertaling van deze tekst, zie het bericht op de Zus&Zo website.


To whom it may concern,

For a while now, I’ve been growing more and more tired of discussing my personal situation with strangers. I am surrounded by people who love, support and understand. So I’m often apprehensive of venturing out into the world where things do not always turn out pretty. It’s not well-suited for someone like my sister, who is perceived to have an intellectual disability and falls somewhere on the neurologically atypical side of the spectrum. That by extension means it is also ill-suited for me, both because our minds sometimes work in the same mysterious ways, and because ensuring her care as well as the comfort of the people we interact with is a concern. I tend to forget society sees her as different when it’s just the two of us. So when I’ve been out of touch for a while or have only hung out in the spots where people already know and accept us, I can forget how shitty (i.e. discriminatory) generally held opinion on disability can be.

The past few years, I’ve been working on not being one of those people who responds with “All lives matter” when clearly the lives in peril are black. Not that I ever was the kind of person to take “All lives matter…” in any way seriously or have ever had the urge to hijack a conversation and utter things like “Not all men…” But we all grow up in a culture with biases and sometimes harmful norms and I internalised those to a certain degree and so they’re part of me even if I don’t want them to be. This means they sometimes come back out. It means that I need to let others hold me accountable for them and hold myself accountable as well. It also involves apologising and owning up and then changing who I am and how I look at things. Point is: I’m trying my very best not to be that person who makes the world unsafe for others. I’m not gonna avoid specific topics or hold my tongue for fear of causing offence by saying something insensitive, because the world will never change for the better if I don’t engage or learn by fucking up. But I’m also trying to be basically decent and not a dick.

I’ve found it helps to be ok with disagreement and to accept that many opposing and contradictory views can be equally valid and true at the same time. To be ok with that multiplicity. To go along with people when they tell you of their experience, and to try and be open when you recount yours. And to try to not forget that subtle and less subtle power structures that shape society and shape us all are also present in these conversations and in our connections with others. But in the end, even with all the inequality and history we’re saddled with, I’d argue that people are people, that all beings are beings of equal worth.

I provide this lengthy preamble in three parts to explain my shock at being on the receiving end of the most bullshitty conversation I’ve had in ages (and that’s saying something). It’s not that I don’t know how people judge our situation. It’s just that I can sometimes forget because my lived experience is so much more positive than the generally held view of that experience in society at large. Or sometimes I’m just at yoga and my thoughts don’t stray far beyond my body and trying to be at peace with it. But to others, my personal situation can be more relevant than it is to me in that moment. Still, I had not expected someone to utter the word “mongoloid” in a conversation with my mum in the changing room. Nor had I expected to then, two weeks later, hear this person complain about the brusque reaction she got as a response to said conversation. A conversation in which she used abusive slurs and expressed views that I can only describe as deeply discriminatory to me and the people I love. So I was naked in a fucking shower and this person wanted to let my mother know that she’d been deeply offended that my mum could have considered her ableist, and how much this had confused and unsettled her. It took me a while to process this second verbal ambush, during which I tried to explain that such a thing as discrimination of people, including people with varying levels of ability, does in fact exist and has been experienced by me also. And then it suddenly struck me that we just got “Not all normatively-abled-people…”d something fierce. With a heavy dose of tone-policing thrown in for kicks.

I did not respond how I would have wanted to, I was caught of balance. Hence this open letter. What I should have responded with was: “Dear intrusive person who started this unwanted conversation in the first place, your taken offence is irrelevant. Firstly: I’m not discussing this with you buttnaked in a changing room and would prefer not to discuss it with you at all. Secondly: I’m not gonna tell you that you’re a nice person who doesn’t discriminate. You did and you stereotyped my mum in the process, which angered her and hurt me. You’ve also said some things about the person closest to me that I’m very glad she won’t able to understand due to her being non-verbal. But I do understand them, and I do think you’re being at least ignorant if not outright ableist. And frankly, it’s not my job to fix that or to educate you, it’s yours. You’re experiencing discomfort and you feel hurt. Maybe it’s time to consider why you feel this way. Why are you so offended? And why do you feel your taken offence is in any way pertinent and worth sharing? What does it matter if I consider you ignorant and ableist when you apparently know you’re not? Why does this resonate strongly with you, so strongly in fact that you’d prefer for me to give you a false apology rather than to investigate the value judgements you have regarding ability? Have you considered that us removing ourselves from a conversation might purely be out of self-preservation? And why does your feeling hurt by that rejection matter more to you than my need for safety and keeping distance from discriminatory remarks?

Also, kindly do not admire me for what you perceive to be my martyrdom as a carer, because that’s just pity dressed up in a nice frock. Especially don’t put that on my mum before basically reducing her to nothing more than pitiable/admirable suffering parent. My parents (both of them!) raised two (two!) kids with equal care and consideration regardless of their perceived abilities. My mum’s been working on the topic of disability for decades, way before my sister or I even existed. So I think you owe her some shutting up and listening to rather than ‘admiration’ for what is basically just loving your kids for the individuals they are. And finally, please, for the love of fuck do a google on what terms haven’t been in use since the 1950’s, because I’m pretty sure “mongoloid” is up there with the n-word. And you, my unwanted and unpleasantly close-minded shower-companion, are not the Kanye West of Down syndrome. I’d suggest that it’s time for some rigorous introspection, but if my previous attempt at explaining the existence of discrimination was unsuccessful, I hold out little hope for that. So at the very least respect my not wanting to talk to you and I’ll try and refrain from pointing out that disabled people, some of whom are my kin, are still actually, you know, people. Apparently you’re shocked that this is a sentiment that needs saying. You’re offended that I think that you’re someone to whom it needs being said. Then again, you confidently started these conversations off with an offensive and outdated slur, so that should have been a clue. Now can I please just go put on my pants in peace.”

I’m just more than tired of having these unwanted intrusions over and over again in the weirdest of places in varying states of undress. I don’t often go looking for this conversation, but here we are. Writing this, at least I’m fully clothed. For ages, I have not spoken out on the topic and my personal connection to it because discussing the ways in which I’m on the receiving rather than the giving end of ignorance can feel rather self-serving. But apparently, we’re not discussing this enough or at all, when the conversation is forced upon me in a shower. So consider this my two cents.