by Aimée O’Connell
For word puzzle lovers, a list like this might bring the daily New York Times Connections game to mind. We might drop them into the yellow “straightforward” group, assuming the category to be elements of a haunted house, or things associated with Halloween, especially at this time of year.
Actually, I do place these four together in one category, but they fall into the purple “tricky” group. The category heading is “What we get when we ask for accommodations.” I could easily amend that to say What we get when we ask FELLOW CATHOLICS for accommodations, but I know it’s a universal enough problem that it applies to far more situations than just those we encounter in the Church. Even more precisely, I could say What we get when we ask fellow Catholics for accommodations when they ask us what autistic people need in order to belong in the Church. That gets to be more cumbersome than most people are looking for in a word puzzle – and, indeed, than most people want to look squarely at in their own diocese.
Over the past year and a half, I have been invited to discuss matters of autism and the Church by a variety of people and organizations, ranging from local to international. Sometimes I am asked to give a blog interview or to contribute to an article. Other times, I have been asked to sit on committees whose goals are to find concrete ways to improve autistic life in the Church, from sensory supports in the pews to bigger issues like vocation support. I am most eager to say yes, and to contribute what I can from both my professional and personal experience.
And then, I get to the part where I describe the accommodations I need. I do not process auditory information well. I can’t do phone or video calls. I need extra time to reflect on questions and a format where I can respond in writing (such as chat, text, or email). If we meet in person, I need the lights lower, and I may need more frequent breaks. I need to opt out of icebreakers and activities which heavily rely on speaking. I don’t need anything more fancy or complicated than that.
Here is where I encounter phantoms, ghosts, masks, and crickets.
Phantoms: People often agree to provide transcripts and copies of meeting agendas ahead of time, but then, these fail to materialize. Or, responses and interviews I have submitted suddenly vanish, lost somewhere in someone’s inbox.
Ghosts: It would astonish most people to know how many group email threads have gone abruptly silent shortly after I state what I will need in order to participate. It is odd, because other group members ask for flexibility and get multiple, immediate responses. My requests, on the other hand, get ghosted.
Masks: Even after describing in detail what I need in order to participate, people still expect me to “suck it up” – especially if they have not been able to arrange the accommodation I need. Sometimes, the glitches are out of everyone’s control – but the prevailing belief is that I can switch off my autism for that day and just go with the flow until the person in charge of accommodations returns from vacation, or whatever the case may be. People do not comprehend that accommodations are not preferences, nor are they perks, or luxuries. Those same people seem miffed when I do not go along and participate like everyone else. I am promised accommodations but am expected to keep my mask on hand, just in case.
Crickets: Most of my experience in asking for accommodations has resulted in silence. I tell people ahead of time what I need, and I get no response. I offer to do this, that, or the other thing, and I get no response. I ask whether or not my emails are being received, and, yes, they are. Oh. I see. Crickets.
This is a light-hearted slant on looking at something which is not in the least bit funny. More to the point: This month has been especially bad for seeing how autistic people are brushed off. A webinar sponsored by Catholic organizations to discuss autistic vocations found panelists sharing personal (and frankly, embarrassing) information about autistic family members by name, ostensibly without their knowledge or consent. A podcast which asked to interview me via email – for which I spent several days researching and preparing my responses – told listeners that I asked not to be interviewed, and went on to discuss the material I’d sent as though I were not part of the conversation. Never mind that the hosts sent me a long list of questions ahead of time, and that I personally and carefully responded to each one. No – apparently, this does not constitute an interview, and I may as well have been a ghost or phantom, for the way I was completely left out of the rest of the podcast. (We won’t get into the irony of it being a podcast purporting to offer insights in supporting autistic people. In fact, we’ve already suspended irony for all the other examples, since they originated with committees and blogs aiming to support autistic people in our parishes and dioceses).
Folks, I am not a complainer. I probably tend to wait too long before I start making noise. My point in writing this is to acknowledge this ongoing problem in the hope that, if enough of us bring it into the open, maybe it will finally stop. I know what I describe here is more the rule than the exception. I know that most of the people reading this have had (and are having) similar frustrations. I want you to know that you are not alone. We as Church can, and MUST, do better. The mission of autistic people in the Church needs to grow beyond convincing other members of the validity of our needs and experiences… and in some cases, of our very humanity. We have so much more to offer the Body of Christ, if only we would be allowed to unmask and get to work.
Saint Thorlak: Pray for us!
