I don’t want that for my kid.That is not safe.That is too strange to do in public.If you’d only “pull yourself up by your bootstraps” and get over it, the hard things wouldn’t be hard.Your tears and meltdowns prove my point of your incompetence/that you will always be a child.
Monday, April 2, 2012
The Hard Things- Cracked Mirror in Shalott
Often, but especially this month, there tends to be a false equivalency that gets promoted- that Neurodiversity advocates ignore the hard things, or that we don’t experience the hard things. From there, self-advocates are told that we can’t speak to the lives of other, usually younger, Autistics. Obviously this is false. The hard things are a part of our lives, are a core part of them.
On the 18th of March, I had to go to Baltimore. To manage airports, I have a pretty set script that I follow in order to make sure that I make it through the airport and flights. Usually it works fairly well, and if I get confused I let a security person know I”m Autistic and it typically works out. The first time I went through security by myself, I had a TSA agent walk me through the security point step by step. (I have a soft spot for Pittsburgh, PA’s TSA agents as they’ve treated me fairly well. I can’t speak for anyone else’s experiences though.) I’ve had people let me be or give me appropriate instructions when I’ve lost words. Mostly I have decent experiences. Not as peaceful as trains, but decent.
Except this time I flew southwest, and their gate check process is different. Instead of picking your bag up at the gate, they put it through to the carousel in bag claim, and instead count it as a late bag check. A bit nerve wracking as I rarely if ever do a regular bag check. But this wasn’t the hard part. Nor was sitting on the floor next to the assigned baggage carousel for an hour. (I took video of myself rocking there, and it is edited in with other video on my youtube channel.) But by the time I got through what my bag looked like, I couldn’t verbalize words any longer. The words went away. Thankfully the BWI Southwest baggage customer service acted like it wasn’t unusual at all for someone to get out a netbook and start typing instead of talking. I also had to get help getting on the van- which was directly across the room- to the hotel.
That evening, I had to leave dinner because I couldn’t sit upright any more. My brain was completely done, and I poured coffee on the table because I could no longer judge where my cup was in space. The next morning, I couldn’t get out of bed because I had no clean clothes. The very thought of putting on dirty clothes Shut me down for hours. Thankfully, the thing I was at was Developmental Disability centered, so the organizers were understanding, ordered me lunch, managed dealin with the airline and hotel, and the person I was supposed to facilitate with took over my duties. (Thank you Nachama!)
And this is only a mildly hard “day.”
Even the tiny Hard things add up. Loud noises making me need to hide, camera flashes leaving me utterly disoriented, the wrong smells, colors, and textures- the little hard things could make me have issues where I would normally have none or even where I’d normally excel. I curl up in a ball in a grocery store because I don’t know the practical steps rather than economic difference between using credit and debit. I sit on floors in airports for hours because I can’t figure out the steps to get to my hotel. I get C-Diff or MRSA because I can’t remember when to clean. I pee myself because I hear the wrong noise and become scared. I can’t tell until the last moment that I need the restroom, and then I better get running before I forget or lose control.
A thousand tiny hard things.
I had to live off campus because I didn’t understand paperwork for housing and couldn’t figure out that I needed help. I had to drop out of school and became house bound for 6 months because I didn’t understand or know how to ask for help with school tuition or paperwork. I watched my carefully laid goals collapse, and can’t do anything beyond repress and hide when people I know graduate or talk about completing midterms. I lose my ability to conceptualize my goals after having plans go awry.
A thousand hard things.
Becoming homeless for a thousand tiny reasons. Being unable to navigate the housing system, and having to rely almost entirely on my Intensive Case Manager to even fill out the forms let alone deal with the people. Having difficulty with a form because I want to answer truthfully but have no idea how much people have spent buying me toilet paper- and then crying, pacing, yelling the same phrase repeatedly and staring at blank walls. Hiding in my 3 year old niece’s closet because I can’t calm myself, can’t process my environment further to get away from what is bothering me. Being trapped in town because I can’t speak that day and I need to find a way out.
Knowing something is wrong, large or small, and not having the words for it for 5 years. Being told I’m articulate when I can’t get my basic needs across to be met. Trying to report abuse, and not having the words to articulate it yet- then having my call dismissed because of my disabilities and inability to articulate it. Pressing myself into walls or running into them full stop because the pressure is soothing and I can’t get my world to stop- and then being treated poorly for daring to do so. Being put through unneeded procedures because my self soothing behaviors look scary to others, and echoing (oh echolalia!) their words back when they ask why I do them- Is it because of self hate, self loathing? Do you want to die?- because I don’t have the words yet to tell them how it really feels in my head.
Life is full of hard things.
But the hard things don’t make that life less worthy. It doesn’t make it okay to deny accessibility. It doesn’t mean you can’t adjust a little- and often to mutual benefit- to make the world more navigable to us.
The Hard Things don’t take the joy out of it. It doesn’t make the self soothing activities less self soothing. It doesn’t take the joy of observing the infinite diversity of our world within even human neurology- a joy that we can share, if we are willing, despite having infinitely diverse faiths or even having none at all. It doesn’t make my niece’s bringing me my stuffed cat less an act of love. That my former cat, ‘baka, was my service animal that I needed to help me self regulate doesn’t make my affection- nor even my grief at her passing- less deep.
The Hard Things, though, mean that you will look at them and say:
instead of finding a way to make the hard things livable. Instead of accepting that I need help today even if I didn’t yesterday. That I am an adult who is able to make my own choices- even when they are bad ones. That the reason it’s so strange is because of repression. That there are ways to make this all safe. That risk is a part of being human.
That there is joy in being one’s self.
Written for Autism Acceptance Day and Month. Many Thanks to Paula Durbin-Westby for originating Autism Acceptance Day and all the effort she has put into this event- please go check out some of the other posts she’s collected. Thanks also to Emily T for her sharp editorial eye.
Posted by Paula C. Durbin-Westby at 1:34 PM