May 1 is blogging against disableism* day. I had something planned for a while, but I’ve been staring at my computer, unable to bring myself to put together the bits that I wanted to. And that is okay, it really is, because some days that is just how my brain goes.
So instead I’m writing some minis into one post.
I saw a tweet today with one of those titles that enrages me with how misleading it was. It was talking about people who use disability services at the airport under false pretenses. Only, it took until nearly the end of the article for them to specify they meant people who are capable of standing in line but use the complementary chair JUST to get through security. So much of it contained assumptions and sterotypes about what people who use chairs in airports are like or doing. So much of it builds hostility.
I live with a couple of conditions (beyond, obviously, my developmental and MH stuff) that cause chronic pain and variable mobility. Some days, I can move about fine. Some days, I can’t get out of bed for hours. And somedays- more often when I travel- I need my cane for all or part of the day. My activities impact my mobility sometimes, too. If I abuse the advantages of a “good” mobility day, I’m more likely to have a “bad” mobility day the next. If I walk too long a distance (and it’s not always a reliable measurement) for my body that day, there are consequences. Standing for certain periods of time, again variable, have consequences. Sitting for long periods of time also have consequences. And those consequences aren’t always next day consequences. Some are immediate.
My last trip flying was the first one that I took care of myself by asking for help up front. This is after years of having a progressively more difficult time- of having my joints become so inflamed by standing too long or walking too far that I’ve fallen over in strange airports out of pain; of creeping slowly along, last person to make it to the baggage carousel because if I was going to make it that far I would need to stop a couple of times to sit and massage my joints; Of falling down escalators because even though I knew I was disoriented and thought I might have a cataplexy issue (or joint fail issue if we are keeping in the body impacting mobility theme- I’ve fallen from both) I either couldn’t find the elevator on my own or it was labeled in a way that made it unfriendly to use unless you were accompanied or with children. I spent years needing more and more help, but not getting it.
Why? Well, because people are jerks about people needing only part time assistance. Because people assume that if you can stand long enough for the back scatter machine (which tends to be less of a hassle for a number of reasons than the metal detector for me) or to put your stuff on the belt that you dont’ “really” need it. Or if you can make it down the jet bridge- which often isn’t super long, often has railings, and has seating on either end- on foot that you are cheating by using assistance the rest of your trip. This last trip, I even got negative responses from one of the helper people at Hartford airport- they saw a fat chick who is young and can, with a cane, hobble up and down the jet bridge, and treated me differently than the visually fragile elderly woman who was also being assisted. And heaven forbid I not seem miserable.
Articles that don’t come out and say, “people legitimately need these things, and you can’t guess it based on looking at them” when they talk about this sort of thing? Make it harder for people who do need it to ask, especially if they don’t meet the stereotype- or meet the wrong ones.
April, the month that just ended, was Autism acceptance month. I had intended to write for 5 or 6 places. Instead I got out a quick post here, an urgent post as well, and one for ASAN’s Autism Acceptance Month website. I couldn’t pull my brain together enough to submit to TPGA‘s run of guest posts. I couldn’t get something written for here and for Paula’s Autism Acceptance Month blog around. There were several flash blogs that happened, and I was unable to get the words in the right order for any of them. Yesterday there was one for Autism Positivity, and I was only able to push out a poem that I still haven’t decided if I’ll make public or not. I’ll know by tomorrow.
When you are Autistic, April really can be the cruelest month. There is a muddling of stereotypes designed to describe us not as we are, but as forces in the lives of others. For all the efforts we put into those things that can bring our community together, there is a relentless noise in opposition.
For me, April was as confusing and barren feeling as a modernist landscape, a wasteland. The metaphorical shell I built in defense became an echo chamber of self doubt, the well of inspiration barren in the ensuing drought. I tried to spit it all out into words the only way I can when prose becomes a foreign language, through poetry where stating images and not needing to make sense to another person can be powerful. But in the places that I wanted to share, I had little to go around.
As the month drew to a close, internalized oppression reiterated words I heard as a child: “You will never do, will never be, will never become.” But I think they are always echoing there, waiting until I must close down taking in out of desperate self preservation, avoidance of rage. Some things said echo on our souls.
There are horrible, scary things in our world. Today a link was passed around, about a child, aged 6, with disabilities who had been shut in a cage and left to urinate and defecate on himself. What his parents did is horrible, and inexcusable and sadly not a new story. I looked at the photo of the (now empty) cage and was reminded eerily of Utica cribs and other things people tried/try to justify with the burden of the caregiver. And it happens over and over…
One part of my family are Grahams, and the motto is “n’oubliez-” Do not forget.
But in sharing it, I had someone make a comment that the parents must be intellectually disabled and should have had the kids taken away a long time ago. But this is not justifiable, not to me, not any more than any other things. Additionally, the parents were never identified as having any sort of disability, so the comment was made purely on the basis of bias. The horribleness, the evilness that we see when someone treats someone in their care the way that these parents treated their child? That has NOTHING to do with any disability- including Intellectual and Mental Health ones- that the perpetrator might have. Even were there complications, it would not be the reason, and assuming that they are disabled in some way is not ok. (Especially when in the same thread you wax poetic about how the child is especially defenseless because of their disability.)
As a friend might say, you can’t fight ableism with ableism.
I deleted the comment, and for a brief moment was glad that it was on my wall, where it was in my power to do so. But as soon as I had done so, I remembered. That stuff is still out there- and in places where my delete button has no power.
*Disableism- in the UK, certain terms aren’t constructed the same way as in the US. What USAians call “ableism” is therefore called “disableism” for some UK people. (This is similar to how in the UK you protest for something, whereas in the US the word protest is commonly used to mean protest against something.)