Open another survey for another study. In the demographics it once again asks "what is your primary disability".
And once again, I don't have an answer. I can't click one of those check boxes as "primary". I can't type in one word, one diagnosis and say this is the most relevant diagnosis to my life. I've seen it argued that this is for simplicity, for ease of data collection and data analysis. But it doesn't reflect our realities, and this is not just these studies.
I know I'm far from the only person who can't explain myself in terms of a primary disability and secondary disabilities. My bodymind doesn't work like that. I have multiple disabilities. They interconnect they intertwine they interreact and interrelate with each other. It's not only that all of them are important and affecting me. It's that I can't find boundaries. They affect each other. Things can be applied to multiple different labels. Why is my bodymind doing this way this day? Because it is, it doesn't matter a label, it matters how I support myself.
But again, as I apply for the supports I need I am asked my primary disability. And again. I don't have an answer. I guess I choose what they are most likely to understand matches those supports. But again because that doesn't describe me I I am denied supports
It's taken years to get where I am, between people not wanting to actually diagnose me, people not bothering to look at someone who looks like me, and being told I don't qualify for supports I do qualify for because someone with That Disability (which yes is a disability I have) doesn't qualify (but actually I do have needs with That Disability that could qualify me. It's not that simple). I've been both told I have to be only one disability and that if I am multiple in this manner it doesn't make sense.
This has happened repeatedly. This keeps happening repeatedly. This pattern of but you don't look like that. But you can't be that. But you don't need supports because of that. Because you need to be stereotypes of single diagnoses or you don't get any support.
I'm asked my primary diagnosis, and I refuse to answer. I list multiple diagnoses and say this is the list that is the minimal list you need to know to understand me. The nurse says to the occupational therapist, these all interconnect I don't even know what to write down as primary but we're required to write one down. It's the best care I've gotten of the sort. And they're still required to list a primary diagnosis that doesn't fit me.
How many people have had diagnoses denied because of the refusal to recognize that maybe when you have multiple disabilities your presentation might look different. How many times have I had doctors tell me they don't know how to deal with me. It's not just the surveys. It's always the you need to only be one thing when that's just not, accurate.