For far too many disabled people, finding services—let alone accessing them—is a difficult-to-impossible task. When one does find them, then attending appointments, going for tests, and so on, sucks up even more spoons. In almost every case, we have to sign forms giving the provider permission to steal our spoons in whatever way. ODSP wants financial records on a somewhat regular basis, for example. Yet, filling out forms and having to submit reports, document one’s disability, fill out forms again because one has switched to a different department in an agency all steal spoons most of us don’t have to begin with.
In my own case, dealing with forms and remembering to mail them back (Heaven forbid they should be electronic; we can’t have that!) steal spoons faster than a thief in a cutlery shop. Just this week I went in for an appointment, and they initially told me they wanted me to complete a form I had already filled out at a previous appointment this year. I’m pretty sure I did grace them with The Look when I told them nothing had changed in terms of relevant information.
I get why agencies have intake forms; they often do need the information collected. They could at least make them reasonably accessible. The dental appointment on Monday had a medical questionnaire. This was necessary, as they might have needed to administer anesthetic for freezing, or if there was a risk of spiking blood pressure, or other health concerns. I get that. Yet from the start, the questions were problematic. The gender question asked only provided “male/female” as check options. Many of the medical questions could be interpreted in different ways. Chest pain? Hell, yes, it’s how my fibro likes to let me know it’s still there. Is it a cardiac risk? Nope, that part of me is in good-to-great shape—it even changes shape as it should!
It is quite common for Autistic people to interpret questions literally or to see multiple ways of interpreting the question and wonder which interpretation is the one required. In the dental intake form, I didn’t just check boxes, I wrote comments. More spoons used. Other services I have tried to access also have long forms, often just to get an initial meeting to see if one is eligible to access services. Again, most of the forms have boxes that one is expected to fit into and check off.
With the way my brain works, I shut down with all these forms to the point where I’d rather not even deal with the agency or try to access the support. The underlying message is that one has to conform to the way service providers think. Many “treatments” for Autistic and other neurodiverse people try to make us fit into little boxes. They steal our spoons, for little or no return on the investment, before we even begin. Depending on the agency and the forms involved, the spoons stolen might not replenish for many days. When one points out that the forms and reporting requirements are not accessible and keep people from achieving their goals, we are deemed shit disturbers and often labelled “non-compliant” or “disruptive.”
When we seek accommodations, we have to prove we need them. Yet another process that almost always has more forms to fill out, then we have to remember to take to the doctor or other medical provider, and then either mail back or drop off. These are almost never electronic. Or, we receive reminders with ridiculously short timeframes for a response in order to maintain the assistance. When we do receive services they steal our spoons to the point where we have none left to do the things that nourish us. After yesterday’s appointment, I felt like I didn’t have the spoons to get to something I was looking forward to, dealing with public transit takes its own toll, especially at rush hour. If I had Wheeltrans (Toronto’s transit service for disabled folk), I might be able to, but I don’t have that yet because that is yet more forms I have to face to prove I need it.
As I said to my mum a few years ago when dealing with a shitty process, “I do not do well with unnecessary bullshit.” She replied, “You’ve never done well with unnecessary bullshit.” A truth I do not deny, and one that has gotten me into trouble over the decades. I’m tired of being expected to fit into nice little boxes. I am the tzitzit, the knotted fringes on the Tallit, the Jewish prayer shawl. I do not fit into nice little boxes, and especially not the ones made out of ticky-tacky…
Talia Johnson is a multi-faceted woman who is transgender, autistic, Jewish, queer, and more than the sum of her parts. Her work centres on bridging faith and queer communities, facilitating workshops, educating, speaking, writing, one-on-one coaching, counselling, and mentoring. She is a queer and trans sensitivity editor for writers and publishers. Talia’s most recent poem, Holy Love, appearS in the Resilience anthology from Heartspark Press. She is currently studying in Kohenet towards becoming a Hebrew Priestess, and working toward entering graduate school at the Master’s level. Her studies bridge faith, queer, and psychology using queer and feminist intersectional approaches. She lives in Toronto, Ontario.
Oh, how many spoons have been stolen from us, filling out forms and trying to fit into so many different boxes!
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All this! Thank you for sharing this, I connect with much of it. Most of the people we interact with don’t think about the burden of care that patients with chronic conditions have in their lives to meet expectations placed on them.
I had to fill out a non-medical survey for my college yesterday and noted the female/male only options, so I ended up using at least one spoon writing in the comment section about how they should be more inclusive.
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Right?! The gender one is so common. At least one of today’s forms for me allowed typing of salutation even if gender was the binary. *sigh*
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