Autistics Speaking Day 2015: Appliances Talk

I don’t have any great topic to talk about that I’m up for assembling today, so I’m going to write a bit about some of the household appliances that are important in my life, and ones that are helping me live a better life.

Last weekend, my Oster Kitchen Center (which is a stand mixer that can change out parts to be a food processor, or a blender, or…) died. Specifically, the motor burned out.  This mixer has been an important part of my life for the past few years, and I have a strong emotional attachment to it. It was the perfect mixer- two bowl sizes, including a huge one, set so that it can mix even the smallest amounts of egg in the bottom. Able to handle dough and meringue, it was a great treasure for me, a dear friend.

The Oster came from my mother for my birthday a few years ago. She’d gotten it from a yard sale barely used- the woman’s grandmother had given it to her for her wedding 20 years before and it had mainly sat in a cupboard for most of that time as the woman wasn’t a wiz in the kitchen. My mom picked it up for something like $30; a good mixer with a dough-tolerant motor today is several hundred dollars, and that’s without the attachments. (Turns out that kitchenaide considers making bread for your family once a week is “commercial level of use” according to the reviewers who have reached out to their customer service on the more recent models.)

I formed a strong emotional attachment to the Oster. It was a friend to me. Just seeing it in the kitchen and knowing I’d be using it over the weekend would give me a smiling feeling. They say  that autistics might form “inappropriate” emotional attachments to objects but not people. I say it depends on the objects and the people- if the people in your life don’t know you well or don’t accept you but your object is predictable, then of course you will have stronger attachments to objects than people. I have a number of decent people in my life who try to get me that I have an attachment to, but there are also objects that are my “friends,” that I have bonded to emotionally.

The Oster and I were making meringues all last weekend. We were practicing them- my mother is gluten free, and I wanted to try using meringues for her birthday on the 27th. (Happy 50th birthday to my mom, BTW.) And then Monday I started on our final product: cute lids for the custard pies that would spell out “50” over two pies. On the second custard of 4, the mixer stopped halfway through adding the air to the egg whites. I tried the breaker box. I tried unplugging and plugging back in. I even tested the outlet. But it was the Oster’s Motor.

A close up of a pink meringue in a bowl under a mixer

I was devastated. I kept on with making the pies without the meringue, but I kept crying any time I stopped for more than a few seconds. I’m still grieving the Oster, if I’m honest, but a lot of people don’t understand that. The next day my mother let me borrow her standing mixer, but it’s not the same. the beaters don’t reach the bottom of the bowl so you can’t let it take care of things while it beats stuff. it’s harder to add things to. It’s just not the same as the Oster. And it’s not built for the level of baking I use to sooth myself.

I love baking. I love the experimenting and the building of it. I enjoy testing and developing my skills, and the Oster let me do that at a level that matched me. I might only bake on the weekends barring special occasions, but I bake a LOT on those weekends. I make my own bread, I make cakes, I make pies, I try new techniques. Now… I don’t know. It’s more economical for me to get a bread machine and a mid range mixer than a mixer that can handle bread dough regularly. I’m wary though. It will never replace the Oster for me. It won’t be the same. My heart is sick just searching. (And that doesn’t add in the food processor, which I’ll also need to replace since I use it. I have another blender, though.) Rest in machine heaven, my friend. I miss you every time I step into the kitchen.

A white Oster Kitchen Center with the Mixer part attached

The other appliance I’m going to talk about today is my Panda Washer/spin dryer.

I currently live in a second floor apartment. My joints and balance are screwy, so I walk with a cane so that when I fatigue I don’t turn my knees or ankles. I can’t carry large objects up and down the stairs very well or very consistently. Since there’s no laundry in my apartment, I’d also need a way to get laundry to and from my place to the laundromat.

Realistically this meant paying my brother to do laundry for me when it was convenient for him. He tries hard, but I couldn’t exactly be sure I’d have enough clean clothes to get me through if I had to travel. I’d periodically end up having to do laundry in my bathtub, let the laundry drip dry inside of the shower curtains, and hang the laundry all over my place. While not a huge deal to have the laundry hanging around, sometimes for a week before being dry, it’s hard to do laundry by hand.

Then a little apartment washer came through my social media feed. While a little bit pricier than I typically spend on things, it was a small fraction of the cost of a full sized washer, and it had a spin dryer. I ended up talking to my payee person and had him arrange things so I could have enough spending money the next month to purchase one.

My model is a Panda Small Compact Portable Washing Machine (6-7lbs Capacity) with Spin Dryer.  It’s more work than your typical washer but it’s a life saver. Here are the steps I follow:

  1. Making sure that the drain hose is in the sink and the drain switch is set to wash, fill the tub with the fill hose. The fill hose attaches to the sink faucet on one end, and drapes into the wash bin in the other. The fill time is about 5 minutes?
  2. Add a TINY amount of laundry soap. I’m serious, it needs hardly any.
  3. Close the lid and set the timer to the appropriate cycle length. The longest is 15 minutes, and I usually just set it to that to be certain, though it could be as low as three minutes for undergarments.
  4. When the cycle is done, switch the drain switch to drain. This takes about 5 minutes. You can optionally wring the clothes or if you have only one garment in there (like I usually do) you can throw it in the spinner while the wash tub is draining.
  5. Wipe down the wash tub, clean the lint trap and re-secure it, switch the drain switch to wash, and fill the tub again.
  6. Close the lid and set the timer to the appropriate length of time for your rinse cycle. When it’s over, double check that there aren’t suds. If there are you’ve added a little too much soap to the wash cycle and it will need another rinse. If so, repeat steps 4-6 until there aren’t suds.
  7. Drain the wash tub, and put a garment at a time, two max, in the spinner. It will spin out a lot of the water, so you’ll have something that is just damp and can be hung any where without worry. I have washing and spun something one day and been able to wear it the next.  The longest spin cycle is 5 minutes. Make sure that the load is balanced. If it is, after it is up to speed it will be very quiet. If it continues to shake, the load is unbalanced and you need to re-position it.
  8. Hang the spun clothes on hangers someplace where it can dry. There will probably be lint involved, so if you are wearing them to work or other important places, invest in a lint roller?

It is a lot of steps, but it’s a thousand times better than hand washing everything and now that my laundry is caught up, I have less of a stressor. It also is helpful for autistic reasons. I can wear literally the same dress every other day and have it be clean, instead of buying two of the same dress on sale. I can wear exactly whichever of my clothes I want when I want.

If you have easy access to a regular washer/dryer, you probably won’t understand the sheer relief I have right now. (You should probably keep with those if you have access to them- the amount of work involved can be overwhelming for people used to modern washer/dryers.) It is amazing.

small white panda washer next to my bathroom sink. It fits easily into the space and the drain hose points into the sink. The lids are closed and you can see the dials.

The down side is that I can’t wash my blankets in it. It’s not big enough for the spinner to fit the whole blankets. But it can handle individual sheets and all of my towels, and all of my dresses that can be washed in a washer. Another issue is that the drainage hose can seep a little, but it’s not enough to be a huge issue- I just have a towel there that I change out periodically and it’s fine, but buying a washer mat would also work.

You also need to keep a dish towel nearby to wipe down the lid and control panel in between tub fulls. I don’t actually count this as a downside, but some people might. The reason is that the control panel needs to be kept dry.  I had a week where the spinner timer was on the fritz because it got wet, but as soon as it dried out it was as good as new.

I also run a whites or empty cycle with bleach once a week to keep it clean and mold free. I let them soak overnight in the bleach.

So that’s the Panda washer. It has really helped me with my stress levels by making one major task less overwhelming and less unpredictable.

a red circle cross out symbol, crossed out by the same symbol facing the opposite direction in a spectrum of colors, with the words “Autistics Speaking Day 2015 participant”

Read other Autistics Speaking Day 2015 posts! Or submit your own Autistics Speaking Day 2015 post!

Advertisements

Autistic, Allistic, Neurodiverse, and Neurotypical: Say what?

Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.

If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.

You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.

There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.

Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.

Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.

Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:

The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning “other”,  just as “autos” (in “autism”) means
“self”. […]

This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.”  Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.

Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.

On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)

Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.

When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.

I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.

___

Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.

Stimming in Public (and Breaking All the Rules)

I recently put together a video of me Stimming in Public. Regardless of the reception (which has been great!), it has always been intended as an ongoing project for this year.

If you have been following me on facebook, you might have already seen the video I recently put out. In it, I document myself stimming in public spaces during my recent Baltimore, MD and Washington, DC trips, all set to “America” by Orphan Songs. (I really liked the song, and feel so glad that the artist had it up for Attribution and Share Alike use via Creative Commons.)

Some of it was organic- I was there, and happened to think of pulling out the camera on the train, at baggage claim at BWI, and at the Baltimore Waterfront. Others were planned in that I went there with the intent of shooting some video. I spent a long sunny day at capitol hill filming at the Supreme Court, the Capitol building, Library of Congress, Department of Health and Human Services, and the Department of Education. It was both exhausting and satisfying, not just as an art effort but also as someone who was made to feel scared of the potential actions that could be done in the name of these places.

(There are captions at youtube of the song, even if they don’t make it in the embed.)

This, as I’ve mentioned, was never intended to be a one-shot thing for me. I mean, I’m going to be doing the stimming when I’m in public anyways, so I might as well film it in case it does something positive for someone else, right?

Therefore throughout the year 2012, I’m going to be putting together a video of me stimming in public for every major trip. I’ll try to get some interesting/meaningful locations in when I can, but most of it will just be what I have access to since almost all of my traveling is for advocacy events.

Between now and July1st, I know I’ll be going to Harrisburg, PA; Chicago, IL; Seattle, WA; Woodburn, OR; and Detroit, MI. Later in the year I’m hoping to get back to Washington, DC and to visit family in the area of New York, NY; Wallingford and Hartford, CT; Providence, RI; and similar locations. (I’m really hoping on the CT-RI trip to get a chance to film with some people in front of the JRC!)

If I get more things scheduled later in the year, I’ll be filming at those as well. It’s basically an every-chance-I-get thing for filming these. I mainly will be doing them on my own, though I hope as the year goes on to be able to have multiple people in the shots with me. Indeed, I’d love towards the end of the year to have a chance to film a bunch of people stimming together at once. I think it would be really. . .  evocative, to end a series with a community together, when it started with me all by myself. But that’s just a thought, not a plan.

That is the project summary.

I don’t want to act like this is an idea that is exclusively mine. First of all, I’m sure I’m not the first person to think of it or do something like it. Secondly, all I’m doing is filming myself living life as myself, something I hope to have be a reality for all Autistics. It’s scary, but someday it won’t be. Someday I hope to meet young Autistics who were never afraid to stim in front of Authority, who never had to deal with the ableism it can be met with. Autistics who won’t have to make the choice between safety inside of their heads vs safety from people’s bigotry outside of it.

That being said, if you decide to do something similar, let me know! I’d love to see members of our community going out there and doing this if they feel so inspired. I feel like that would be something amazing to see.

Quiet No More- The Loud Hands Project

“Remember, you weren’t the one / who made you ashamed, / but you are the one / who can make you proud.”  – Laura Hershey, You Get Proud By Practicing

I think a lot of the people who read my blog are also people who have read Quiet Hands by Julia Bascom. (I actually already linked to it in my own Rocking (and Flapping) at a 1000 Revolutions a Minute.) If you haven’t yet, please go do so either now or after you’ve finished reading this post. Julia got a massive response, as Quiet Hands went viral. It became very obvious that it was describing an experience that a lot of us have either experienced or have observed, sometimes unaware of the emotional and communicative consequences.

One of the devastating effects of the phenomena that Quiet Hands describes is how it silences Autistic communication. For many of us- and particularly those of us with verbal communication difficulties- our hands are our primary communicative tool1. We stim with our hands, we supplement our language with gestures and pantomime, we use languages like ASL with our hands, we type with our hands, and even utilize AAC devices with them. Things we do with our hands is how we connect with one another- even if that community building isn’t recognized by others. So when our hands are stilled, we are silenced and isolated.

What, with this context, does having “Loud Hands” mean? Obviously it would have to embody the opposite of- and possibly counter to- the silencing described above.

The Loud Hands Project (which is being run as a project of ASAN) demonstrates a pretty good idea of what it could mean to have Loud Hands. The project description defines Loud Hands as “autism acceptance, neurodiversity, Autistic pride, community, and culture, disability rights and resistance, and resilience.” Essentially, efforts that work counter to the silencing and discrediting that comes with a culture that denies Autistics the ability to communicate in ways that are natural to us.

The Loud Hands Project (LHP) is planning on being a transmedia project, spearheaded by Julia Bascom. The current focus is on putting together a written anthology that will serve basically as a foundation document. Submission guidelines/call for submissions for the written anthology went live on January 8th. They include a number of prompts on what it means to be Autistic and aspects of Autistic culture, but they welcome submissions that aren’t answering the prompts while still reflecting “questions about neurodiversity, Autistic pride and culture, disability rights and resistance, and resilience (known collectively as having loud hands.)”

From there, the plan is to focus on multiple mediums as a way of documenting and curating Autistic culture and community, particularly as related to the afore mentioned concept of what Loud Hands means. And I do mean curating- one of the stated goals is to collect and store some of the founding documents of the Autistic community.

Another major direction is looking to be video projects, starting with the trailer (more on that in a moment). I’ve noticed a lot of brain storming for future videos for the LHP media collection, but the actual non-written media submissions aren’t open yet. (Opening of those submissions is still to be determined.) They are welcoming your ideas/brainstorming for future non-written submissions though! Eventually I believe that they will join the trailer on the Loud Hands Project Youtube channel.

Fundraising efforts- LHP is using indiegogo– were launched December 26th with the video below. (You can read a visual transcription/description on tumblr or at the youtube page itself.)

In the first 24 hours, the indiegogo campaign raised over $3000- and over $6000 at the end of the first week. As of 9:30pm January 10th (when I’m composing this entry) it hit $7463 USD. Fundraising ends March 15th with a goal of $10000 USD. UPDATE:  January 14th the $10000 goal was met. They are still collecting funds though- see the bottom of this post for more on this!

You can see the support levels, along with the number of people contributing at each level, at the LHP indiegogo page. Each support level has a different corresponding “reward” for your donation, ranging from a thank you email, to PDF pre-releases of the anthology, to signed hard copies donated to libraries in your name.

I personally feel that it is a much needed project, and am totally excited about it. As such, I’ve been trying to contribute in any way I can to this effort. I wrote the Visual Transcription mentioned above, as well as designing the Blog Badges (shown below) and writing most of the how to on using them.

Blog Badge- large. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking". Below that it reads "Watch the Video. Read About the Project. Support the Work. Visit indiegogo for more about The Loud Hands Project."

The large blog badge, which I'm using in my own side bar; 170x300 pixels

Blog Badge- Small. A large white person is holding a sign up that says "The Loud Hands Project". Below this image, text reads "The Loud Hands Project" and "Autistic People, Speaking"

A smaller Blog Badge; 170x193 pixels

.

.

.

.

.

.

.

.

.

.

.

.

.

I’m also (obviously) writing this blog post, and sharing it in my networks. Right now, LHP is on Twitter as @loud_hands and there’s a Loud Hands Project facebook page as well. (If you clicked through on my original link, you’ll notice that the Loud Hands Project is on tumblr as well.)

I think another interesting feature of the campaign is how various accessibility measures have been added.

The visual transcript for the trailer was requested before the campaign went live, which is kind of a big deal- while captions are becoming more popular, visual transcriptions are not as common. After all, they are time consuming to create- more so than image descriptions- and like image descriptions can be hard for people with visual processing issues to write. But they can be a big deal for visually based messages becoming accessible for the Blind, visually impaired individuals, and those with visual processing issues.

Additionally, there has been a recognition that language processing difficulties can be a barrier in sharing stuff like this. Two days after the campaign went live, scripts for sharing LHP‘s campaign went live.

This isn’t as uncommon to be accommodated, though outright recognition that it is an accommodation is, I think, less common. More often scripts get framed as “We recognize you are a Busy Professional Person™ who doesn’t always have time to handcraft sharing emails, so here’s an example you can use!” It has become something that, when present, isn’t seen as an accommodation, which would be great if it wasn’t for the resistance that those who do need this particular thing usually get when they have to ask for it. I think that in this context, the fact that the scripts are openly recognized as having an access function as well as being given in an overwhelmingly supportive manner in response to requests is significant.

And, of course, the blog badges have image descriptions and I’m going off to caption the lyrics to the song in the trailer via Universal Subtitles tonight. (Which means they’ll be up by the time this post goes live.)

I hope you’ll join me in supporting the Loud Hands Project. I hope you’ll link it, share it, tweet it, blog it, and post it. I hope, for those who have the money for even the lowest level of support ($10) , that you’ll donate. That you’ll encourage others to donate. And, once the fundraising campaign is over, that you’ll continue to support the projects of the Loud Hands Project.

I believe that we all should have Loud Hands, and that LHP is a great way to facilitate that. Not everyone is in a position where they can go and be safe stimming in public, or writing long blog posts, or have the supports to do speeches or attend protests or go to conferences like Autreat.  But it is possible for some of us to do some of the little things- making a video or a painting, answering a mini-prompt, constructing things in our own natural languages that say, “I am here. I exist. I can be proud.” These are the core of what it means to have Loud Hands.

The big things are great. But sometimes it’s the little ones together that end up being the loudest.

1 I recognize that some of us also have mobility difficulties that make using hands in particular not something that is doable. If you can think figuratively, hands is a stand in for all the other non-verbal techniques that people use to accomplish the things we are talking about. Our hands here are not just literally our hands, but our own means of communicating. The same goes for words like “voice” and “speaking”.

UPDATE (January 16th, 2012): On January 14th The Loud Hands Project met their $10000 USD goal. That’s right, in 19 days you- the supporters- met a goal that was planned to take 80 days. Great Job!

Seeing how much our community needs LHP, and with encouragement from indiegogo, LHP is going to continue fundraising through the original March 15th deadline with benchmark goals at $15,000, $20,000, and $25,000. You can read the details on the projects at the Loud Hands Project blog, but they include more videos, more documenting of our community, more supporting Autistics pursuing community, and the launch of the website and all of the resources that will bring.

It’s exciting- exciting because we need it, and exciting because it means that we won’t have to wait for the anthology to be a success before LHP will be able to start bringing more projects to us.