The Things I Love
The next disability blog carnival, hosted by David Hingsburger, has the topic of 'the love we have for the things that make the world accessible for us'.
This is a tricky one for me, because I use very little adaptive equipment. Accessibility for high functioning autism is not primarily achieved through adaptive equipment, it's achieved through people. Tolerating a lack of eye contact or other unusual nonverbal behavior, using literal speech, explaining things directly that others pick up implicitly, not getting offended by our innocent social gaffes, warning us of upcoming changes in plans... Most of these things can't be done by a piece of equipment - they must be done by the people we interact with.
In fact, when I think about what little adaptive equipment I do use, it's in very limited and exceptional circumstances. I get a room alone and computer for exams at university. I occasionally go to a Snoezelen room, which is a special sensory room for people with developmental disabilities to experience controlled sensory stimulation. Once, I used a wheelchair for a museum trip because standing too long is painful. For awhile I used a notebook to communicate when I was having a meltdown, but I lost the notebook and haven't had a meltdown that bad for a long time anyway. About the only thing I used on a daily basis was a beeping watch to help with poor time sense, but I mostly felt annoyance towards the thing. (It felt annoying on my arm, kept getting lost if I took it off, and made annoying sounds when the alarm went off, which was even more annoying because I kept forgetting to change the alarm when the corresponding event was over.)
My biggest source of accomodations, really, is my parents. But that's too easy. So instead, I'll talk about the things that I use, which aren't necessarily adaptive equipment (in that they don't compensate for disability), but are important for my functioning and enjoyment. And these are the things I do, in fact, feel genuine affection for.
Firstly, there are my pads of paper and my pens. I especially like black pens that write easily, and I get rather possessive of these and feel genuine sorrow when they die. My papers carry my stories, which channel the people I have created in my mind and the tales I can tell about them.
It's hard to describe how important my stories are to me. When I told them with twist tie people, those twist ties felt like an extension of myself - now my pads of paper do. (This is why it was so upsetting when my teachers would confiscate my twist ties and never give them back. If you do feel it's necessary to confiscate a child's possessions, give them back afterwards!)
There's also my jacket. I tend to wear a jacket in much warmer weather than most people. Partly, this is simply because I'm slow to adjust my clothing to the weather. But whereas I wear runners in fall about as much as I wear winter boots in spring, I start wearing my coat much earlier in fall and keep it on longer in spring. Only when the climate gets so hot that I can't tolerate it do I take my coat off.
My jacket is a shield from the world, because it blocks touch and some sights and sound (especially with my hood up) and the weight of it is comforting. A lot of people with sensory processing differences use a jacket to help with sensory regulation, so I guess maybe you could argue my jacket is adaptive equipment even though it's not intended that way. I like to wear large jackets - when I was younger, I wore an adult-sized jacket that I could fit my legs inside to curl up and keep warm.
My jacket is also a world I carry with me. I store a lot of things in my pockets. When I played with twist ties, my twist ties were kept in my pockets - both the creations and the unused twist ties. My papers don't fit in my pockets, but my pens do, as does the memory stick I've been typing up my finished stories onto. I also stick candies, notes on things like journal articles, and my ID cards in my pocket. As well as wrappers that I couldn't throw out at the time. The weight of my pockets adds to the comforting weight of my jacket, but more importantly, they contain all the small things that I want to have with me at any time. Someday, I'd like to have a jacket entirely covered in pockets, all zippable so things won't fall out.
The last 'thing' is the Internet. The Google homepage gives me a little feeling of happiness when I see it, because it's been my portal to wonderful discoveries. I was basically educated by the Internet. In school, most of my true learning took place in my free time when I googled things. When I was homeschooled, I spent almost all of every day on the computer, and my education came primarily from the results of Google searches. (Plus PubMed, of course.)
The university libraries give me a similar feeling as Google does. I spent many a happy hour curled into a corner of the library with a stack of books on my chosen topic. My Dad has a photo he took once when he came to fetch me from the Education library. Photos taken without the target's knowledge always seem to show the person's personality more clearly, and in this one, the joy of concentrated learning is plain in my demeanor. My idea of heaven is a library with every book ever written, and myself able to read any language.
These are the things I love.
This is a tricky one for me, because I use very little adaptive equipment. Accessibility for high functioning autism is not primarily achieved through adaptive equipment, it's achieved through people. Tolerating a lack of eye contact or other unusual nonverbal behavior, using literal speech, explaining things directly that others pick up implicitly, not getting offended by our innocent social gaffes, warning us of upcoming changes in plans... Most of these things can't be done by a piece of equipment - they must be done by the people we interact with.
In fact, when I think about what little adaptive equipment I do use, it's in very limited and exceptional circumstances. I get a room alone and computer for exams at university. I occasionally go to a Snoezelen room, which is a special sensory room for people with developmental disabilities to experience controlled sensory stimulation. Once, I used a wheelchair for a museum trip because standing too long is painful. For awhile I used a notebook to communicate when I was having a meltdown, but I lost the notebook and haven't had a meltdown that bad for a long time anyway. About the only thing I used on a daily basis was a beeping watch to help with poor time sense, but I mostly felt annoyance towards the thing. (It felt annoying on my arm, kept getting lost if I took it off, and made annoying sounds when the alarm went off, which was even more annoying because I kept forgetting to change the alarm when the corresponding event was over.)
My biggest source of accomodations, really, is my parents. But that's too easy. So instead, I'll talk about the things that I use, which aren't necessarily adaptive equipment (in that they don't compensate for disability), but are important for my functioning and enjoyment. And these are the things I do, in fact, feel genuine affection for.
Firstly, there are my pads of paper and my pens. I especially like black pens that write easily, and I get rather possessive of these and feel genuine sorrow when they die. My papers carry my stories, which channel the people I have created in my mind and the tales I can tell about them.
It's hard to describe how important my stories are to me. When I told them with twist tie people, those twist ties felt like an extension of myself - now my pads of paper do. (This is why it was so upsetting when my teachers would confiscate my twist ties and never give them back. If you do feel it's necessary to confiscate a child's possessions, give them back afterwards!)
There's also my jacket. I tend to wear a jacket in much warmer weather than most people. Partly, this is simply because I'm slow to adjust my clothing to the weather. But whereas I wear runners in fall about as much as I wear winter boots in spring, I start wearing my coat much earlier in fall and keep it on longer in spring. Only when the climate gets so hot that I can't tolerate it do I take my coat off.
My jacket is a shield from the world, because it blocks touch and some sights and sound (especially with my hood up) and the weight of it is comforting. A lot of people with sensory processing differences use a jacket to help with sensory regulation, so I guess maybe you could argue my jacket is adaptive equipment even though it's not intended that way. I like to wear large jackets - when I was younger, I wore an adult-sized jacket that I could fit my legs inside to curl up and keep warm.
My jacket is also a world I carry with me. I store a lot of things in my pockets. When I played with twist ties, my twist ties were kept in my pockets - both the creations and the unused twist ties. My papers don't fit in my pockets, but my pens do, as does the memory stick I've been typing up my finished stories onto. I also stick candies, notes on things like journal articles, and my ID cards in my pocket. As well as wrappers that I couldn't throw out at the time. The weight of my pockets adds to the comforting weight of my jacket, but more importantly, they contain all the small things that I want to have with me at any time. Someday, I'd like to have a jacket entirely covered in pockets, all zippable so things won't fall out.
The last 'thing' is the Internet. The Google homepage gives me a little feeling of happiness when I see it, because it's been my portal to wonderful discoveries. I was basically educated by the Internet. In school, most of my true learning took place in my free time when I googled things. When I was homeschooled, I spent almost all of every day on the computer, and my education came primarily from the results of Google searches. (Plus PubMed, of course.)
The university libraries give me a similar feeling as Google does. I spent many a happy hour curled into a corner of the library with a stack of books on my chosen topic. My Dad has a photo he took once when he came to fetch me from the Education library. Photos taken without the target's knowledge always seem to show the person's personality more clearly, and in this one, the joy of concentrated learning is plain in my demeanor. My idea of heaven is a library with every book ever written, and myself able to read any language.
These are the things I love.
posted by Ettina at 5:43 AM
5 Comments:
Thank you for this lovely post. I recognize the feeling of a well-loved jacket in which to carry my world around with me.
When you're looking for that jacket that's full of zippered pockets, I recommend Scott-E-Vest. You can see their jackets, coats and vests at http://www.scottevest.com/v3_store/subindex_jackets_vests.shtml?quicklook=1
I own one of the 22-pocket vests and wear it a lot.
..I'm honestly unsure as to whether the comment above me is spam or not. o_o
I'd like to say that at least the topic wasn't strictly "technology" that's helped you; it just says "things." That can apply to the internet, to jackets, and of course, to people. :3 So your answers seem perfectly reasonable, not to mention very sweet and admirable.
..I really enjoy this blog. .w.
I came because of the blog carnival. I appreciated your post and the thought you put into it.
I like what you said about needing people to be your adaptive connection to the world. That is so true - for all of us. You've got me thinking...
I was thinking along the same lines that Susan was as I was reading...and also that the things that you identified as not really being adaptive equipment really are, to my mind. If it makes your life easier to manage and the world a bit easier to navigate (whether in the literal or metaphorical sense), why not consider it adaptive equipment?
In that sense of the word, we all have adaptive equipment. :)
(I always carry a notebook and pen too, by the way...a writer never knows when he or she will need one!)
This was a very enjoyable post...thank you. :)
I love this post! You taught me things about autism I didn't know and made me smile in recognition when you talked about pens and especially the library. That'd be my heaven, too.
Post a Comment
<< Home