I survived Lansing and the Developmental Disabilities Self Advocate Board training. Barely. It was both better than I'd hoped and worse than I'd feared. The better part was that the atmosphere was very supportive, and the schedule less a corporate training day and more a "we're here to teach you stuff, but you're allowed to get up, use the bathroom, etc. as you need." The staff and the other members of the board (only 13 members total, so 12 other people plus staff), were very positive, helpful people.
The staff had provided catered lunch (including, at every meal, a vegetarian option for me), but also snacks ranging from fruit to chips to candy. Very generous and thoughtful of them. I definitely anxiety-snacked, unfortunately, but that was much more pleasant than being stuck in my chair trying to take notes for 8 hours (giving you the stink-eye here, college).
The worse was that I'd forgotten how much people like to talk, and how often they're not very good at getting to a point. Especially people that aren't very aware of how introverted people like me work. I became exhausted within 3 hours, and remained that way for the rest of the 9 hours of work. I say 9 hours because the sleep I got at the hotel was very insufficient to recovering my energy.
So the very first thing: I was, so far as I could tell, the only autistic person on the board. There were a lot of people with cerebral palsy, some of whom were very difficult to understand. (Mind you, they were all very nice people, but I'm not used to deciphering that style of speech.) My roommate for the hotel room was blind, and with a service dog. There were people in wheelchairs and electric scooters. It was a bit dizzying. Worse, about half of them already seemed to know each other.
The material they were trying to teach us was the basics of what a board is, what it does, some methods it can use to do its job, etc. The staffers seemed very earnest in getting us to understand those things, which was fine. The presentations and lectures weren't fancy, but they didn't really need to be. What got to me was that people kept getting off track, or wanting to just talk about themselves. And you could lose the conversation for at least 5 minutes while that happened. We did end up setting some ground rules ("guidelines") for the board, which included words not to say. "Retard" and "client" among them.
I'd heard and already knew not to say "retard" because obviously people with developmental disabilities are going to find it offensive if you slur them that way. For the same reason, you don't call any African American person "nigger" unless they've said it's okay. Or unless you're horribly racist, I guess.
But "client" was a new one. My context for "client" was in psychology, where it was a nicer, more empowering word to use than "patient." So needless to say, I was surprised to find it was now a dirty word. Turns out people are very touchy about the tendency of medical professionals to believe they know better than the disabled person. As if being a medical professional somehow let you know more about what it's like to be disabled than the actual disabled person. Apparently sufficient numbers of disabled people have felt that exact situation occurred, linked with the word "client." So that's why it was a banned word. Just goes to show how language evolves.
Other highlights of the day include me nearly having a meltdown, only to be saved by my roommate and her dog. We'd been sitting for about 6 hours (with a break for lunch), and I was just about to snap and either burst into tears or start strangling the next person to go off topic. Then she calmly informed the room that her dog needed a bathroom break, and as soon as it was agreed to take a break, I all but bolted out of the room and to a far corner away from everyone and everyone's sight. I spent the entire break there, listening to music on my headphones and trying to photosynthesize energy by staring outside into the sunshine and blue skies. It didn't work, but the pressure in my head did abate somewhat by the time I was forced to return.
There was also the optional evening activity, which the organizers let the board members decide on. I, personally, couldn't imagine trying to be social after doing that entire day. But they had handed me a ticket for a single free alcoholic drink, so I grabbed that before hiding in my hotel room. Not sure if it was the drink, the fact that I was able to chat with Chris via text unhindered, or the quiet, but I definitely felt much better being in my hotel room than out and about. I wasn't entirely alone; my roommate and her service dog had also retreated to the relative safety of the room. But she wasn't a bother at all, so it was much more pleasant than I'd expected.
I slept uneasily, in a new place and a new bed with dog sounds. It's not that the dog was loud, because she wasn't. My hearing is just that sensitive. Fortunately for my sanity, my roommate woke before I did so I didn't have to feel awkward about my alarm going off and waking us both for breakfast. The breakfast at the hotel was sadly limited, but at least there was something.
The rest of that second day kind of blurs together for me, but I definitely recall entirely running out of patience for all digressions from the matter at hand. So I guess patience is something I'm going to have to keep working on...
The other thing that sticks out was how little I know about other developmental disabilities. For instance, cerebral palsy can put you in a wheelchair. I'm familiar with wheelchair ramps, because stairs are a headache for wheelchair-bound people. But it didn't occur to me that carpet types might make a difference to how inclusive a place is. The thicker, fluffier, and more friction-y the carpet, the more annoying it is to move a wheelchair over. If you're getting around using your arms, and your arms get tired from having to fight friction for every inch, you're kinda out of luck. Unless you want to ask for help, which people with disabilities can be touchy about.
Also, blindness comes in a variety of types. You can be legally blind without being totally blind, so you can see, but everything is so blurry and horrible that you will never be allowed to drive. You can, however, still use a smartphone. Especially if the smartphone's text size can be increased to 18 point font. I saw a lot of 18 point font at the training, in fact. My roommate wasn't the only one to be more comfortable with large font, so basically every piece of paper we had was in large font. Except for the government forms. Which I presume are invalid unless printed just right. Because it's the government.
After all the things had been said and done, about half the people beat a hasty retreat. I guess I wasn't the only one exhausted by the trip. I stuck around long enough to say goodbye to a few people, then followed suit. It was a long hour back, and I was useless for the rest of the day. But thankfully then it was the weekend, and Chris was home, so we had a nice day in.
The staff had provided catered lunch (including, at every meal, a vegetarian option for me), but also snacks ranging from fruit to chips to candy. Very generous and thoughtful of them. I definitely anxiety-snacked, unfortunately, but that was much more pleasant than being stuck in my chair trying to take notes for 8 hours (giving you the stink-eye here, college).
The worse was that I'd forgotten how much people like to talk, and how often they're not very good at getting to a point. Especially people that aren't very aware of how introverted people like me work. I became exhausted within 3 hours, and remained that way for the rest of the 9 hours of work. I say 9 hours because the sleep I got at the hotel was very insufficient to recovering my energy.
So the very first thing: I was, so far as I could tell, the only autistic person on the board. There were a lot of people with cerebral palsy, some of whom were very difficult to understand. (Mind you, they were all very nice people, but I'm not used to deciphering that style of speech.) My roommate for the hotel room was blind, and with a service dog. There were people in wheelchairs and electric scooters. It was a bit dizzying. Worse, about half of them already seemed to know each other.
The material they were trying to teach us was the basics of what a board is, what it does, some methods it can use to do its job, etc. The staffers seemed very earnest in getting us to understand those things, which was fine. The presentations and lectures weren't fancy, but they didn't really need to be. What got to me was that people kept getting off track, or wanting to just talk about themselves. And you could lose the conversation for at least 5 minutes while that happened. We did end up setting some ground rules ("guidelines") for the board, which included words not to say. "Retard" and "client" among them.
I'd heard and already knew not to say "retard" because obviously people with developmental disabilities are going to find it offensive if you slur them that way. For the same reason, you don't call any African American person "nigger" unless they've said it's okay. Or unless you're horribly racist, I guess.
But "client" was a new one. My context for "client" was in psychology, where it was a nicer, more empowering word to use than "patient." So needless to say, I was surprised to find it was now a dirty word. Turns out people are very touchy about the tendency of medical professionals to believe they know better than the disabled person. As if being a medical professional somehow let you know more about what it's like to be disabled than the actual disabled person. Apparently sufficient numbers of disabled people have felt that exact situation occurred, linked with the word "client." So that's why it was a banned word. Just goes to show how language evolves.
Other highlights of the day include me nearly having a meltdown, only to be saved by my roommate and her dog. We'd been sitting for about 6 hours (with a break for lunch), and I was just about to snap and either burst into tears or start strangling the next person to go off topic. Then she calmly informed the room that her dog needed a bathroom break, and as soon as it was agreed to take a break, I all but bolted out of the room and to a far corner away from everyone and everyone's sight. I spent the entire break there, listening to music on my headphones and trying to photosynthesize energy by staring outside into the sunshine and blue skies. It didn't work, but the pressure in my head did abate somewhat by the time I was forced to return.
There was also the optional evening activity, which the organizers let the board members decide on. I, personally, couldn't imagine trying to be social after doing that entire day. But they had handed me a ticket for a single free alcoholic drink, so I grabbed that before hiding in my hotel room. Not sure if it was the drink, the fact that I was able to chat with Chris via text unhindered, or the quiet, but I definitely felt much better being in my hotel room than out and about. I wasn't entirely alone; my roommate and her service dog had also retreated to the relative safety of the room. But she wasn't a bother at all, so it was much more pleasant than I'd expected.
I slept uneasily, in a new place and a new bed with dog sounds. It's not that the dog was loud, because she wasn't. My hearing is just that sensitive. Fortunately for my sanity, my roommate woke before I did so I didn't have to feel awkward about my alarm going off and waking us both for breakfast. The breakfast at the hotel was sadly limited, but at least there was something.
The rest of that second day kind of blurs together for me, but I definitely recall entirely running out of patience for all digressions from the matter at hand. So I guess patience is something I'm going to have to keep working on...
The other thing that sticks out was how little I know about other developmental disabilities. For instance, cerebral palsy can put you in a wheelchair. I'm familiar with wheelchair ramps, because stairs are a headache for wheelchair-bound people. But it didn't occur to me that carpet types might make a difference to how inclusive a place is. The thicker, fluffier, and more friction-y the carpet, the more annoying it is to move a wheelchair over. If you're getting around using your arms, and your arms get tired from having to fight friction for every inch, you're kinda out of luck. Unless you want to ask for help, which people with disabilities can be touchy about.
Also, blindness comes in a variety of types. You can be legally blind without being totally blind, so you can see, but everything is so blurry and horrible that you will never be allowed to drive. You can, however, still use a smartphone. Especially if the smartphone's text size can be increased to 18 point font. I saw a lot of 18 point font at the training, in fact. My roommate wasn't the only one to be more comfortable with large font, so basically every piece of paper we had was in large font. Except for the government forms. Which I presume are invalid unless printed just right. Because it's the government.
After all the things had been said and done, about half the people beat a hasty retreat. I guess I wasn't the only one exhausted by the trip. I stuck around long enough to say goodbye to a few people, then followed suit. It was a long hour back, and I was useless for the rest of the day. But thankfully then it was the weekend, and Chris was home, so we had a nice day in.
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