My #A11yReality, days 3 and 4... I'm combining them. I had a chance for work to present and work with some wonderful people in leadership, and some out on the frontlines helping people cope with disability onset in rehabilitation. We talked about disability and technology onset, how the two intersect in the mental health of someone adjusting to losing their eyesight, and some of the physical and emotional and learning barriers people encounter as they begin using technology as an independent living tool. When print handouts were passed around the table, I pulled out my phone, snapped a picture of the paper, and was able to read with everyone else, in text to speech, or in braille via bluetooth if i wanted to. That ability still makes me feel like the giddy preschooler getting her first big-girl pair of pink ballet shoes with ribbons... "I'm a graceful twirling free beautiful ballerina now! I can read print! The whole world wants to cheer as I read this print page!" Okay, I don't think the world cares, but you know how the brain of a kid works--glee over that next step into the wondrous world of "I'm able to do this, therefore I can queen the world!" It feels really good.
More pictures, more transportation logistics to slog through, more emails I have to send that say: "Can you do X thing so I can access thing Y." Handing a stack of paperwork to a friend and saying: 'Can you help me with this?" Picking my battles. What is the best use of my time? Working to make something accessible to me, or just asking someone to do it?
I'm pretty used to assessing a situation at a glance and knowing what to do to resolve it; ask, or push through on my own.
But not with my secondary disability--my cognitive stuff. That is much harder for me to manage because I'm still getting used to it, it is not as constant as my blindness, nor as profound... and that means that sometimes I miss the warning signs until it's too late and my brain is already struggling. I'm learning. By making mistakes, then going back, analyzing where my brain began to falter, and figuring out what I need to do next time to keep that from happening.
I had a moment tonight while stroking my old retired Guide Dog's head and scolding the young, current Guide dog for jealously butting in when he had all my attention all day long out in the field, and the retired guy hasn't seen me all day.... Accessibility challenges and all, my life is pretty standard... just lived differently. WE get caught up in the minutia of complication, from big giant signs outside businesses that I can't read--I don't even know they're up on that window over there--to checking appliances in places as I look to move to see if I'll be able to label them in braille. Surreptitious hand brushes to find things on a table, tapping a toe or snapping my fingers to hear echoes around me and find out what my environment looks like spatially--yes, I'm a bat-like creature that uses echo location.
To a simple moment where i'm following a conversation, and my brain suddenly... shuts off. Glitches. I can't get the words in my head to come out. I want to sleep. What were we talking about? Words. Get the words out. He's waiting for you to answer, and your slurred mumble isn't an answer... Articulate! Think the word please. I'm thinking it! I know what I need to say here... but I can't! Now I'm tired... I have to rest for a minute. My brain had a tiny 2-second seizure event that most people won't know is an event, but the queasy, spacey feeling like I just fell asleep and woke up in two seconds... the dizziness. I know. I try and mask it, but now I need to turn off my brain for a few minutes, let it reboot. Let it recover. Then I feel much better.
And that's pretty typical for me. Building that into my conversations. People who know me well are used to it, I might pause suddenly, mix up syllables or slur or stop speaking, and I'll recover like it was just a fumble, but then I'll get very quiet, tired. I'll just want to be quiet for a few minutes, to rest, like you rest your tired eyes after reading for hours. I have to rest my brain like that. The accessibility of building cognitive and language processing disabilities into daily speech is exhausting but that's because i know. I feel it. And I have to do a lot more to get used to coping with it.
Doing homework for my chaplaincy studies program, and reading about patients who cannot verbalize their wishes, and alternative methods of communication. And I see myself in these pages. I feel my body react in fear to things I read. I put down the reading, and instantly fall asleep, i have exceeded my energy allotment for now, and my body needs a recharge. I'll eat and read when I have a little energy, maybe at midnight after I've slept a few hours I'll have the energy to get up and try and eat. Right now eating is too much energy. Must sleep. Energy and sleep are both disability-related and accessible or not. Except we're the ones who regulate their accessibility. Time to put my body and health back up on the first rung, and put work and studies down for a few hours.