Grieving is a paradox. On one hand I feel numb, like I’m stuck in gray vacuum. On the other hand I’m overflowing with some kind of emotion. Maybe it’s sadness, maybe it’s something else in this as well as the the sorrow.
When I think about it, I guess there’s a bit of shame in this. I’m ashamed because the autistic world and the allistic world aren’t great at working together and I’m stuck in between them, blamed, ridiculed and belittled for my efforts to translate and convert logics between these worlds. For some reason, it’s always up to the people from the autistic world to explain and prove our needs to the allistic world and when I have explained myself into exhaustion, the allistic world usually doesn’t appreciate my efforts. I try to explain, illustrate and point at sources just to be told that my needs are just as unreasonable as my kid’s needs. They won’t be accommodated because of some made up policy that makes no sense at all more than that it fits allistic people.
I know that it isn’t my fault, but the shame is still deep and burning. The sadness of being denied accessibility isn’t only for all the practical problems it causes – it’s just as much about the message that refusal of accessibility sends me. The message that says that I’m not worthy the access to healthcare or that my kid isn’t worthy of access to education. That we’re asking for something unreasonable when we’re asking for the same things as abled people. Like we’re not real people.
It seems like the grieving hits me like a tornado every time I’m told that accessibility won’t be created for me or my kid. Every time I’ve had a long email conversation, filled with efforts to make the receiver understand my or my kid’s needs, and finally get a clear answer instead of the endless BS of circling around my question, it hits me with a pain I thought I would get used to. But I’m not getting used to it. My skin isn’t getting thicker for every time it happens, instead I break more and more and just fall deeper and deeper inte the burning shame.
Because I’m not a real person in the abled world’s eyes, and neither is my kid. I can’t even carry my own pain, and knowing that my kid will go through this is too much. I can’t handle this.