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!

Impact

[Content: mentions of murder, attempted murder, and ableism; internalized ableism; suicidal ideation]

This is a difficult post to write. It’s always difficult, of course, to touch on the subjects of murder and ableism, and on how they are excused. It’s more difficult to talk about the impacts in personal ways, ways that are your own lived responses and realities, rather than as abstracts. There’s a distance to the abstracts that keep you feeling safe, even though you know you aren’t. And this doesn’t even account for the risks that writing about those impacts can have on you personally. It is, plainly, all around difficult.

As a child and teen, I mainly just shrugged off these representations as I heard them. They may not have been as prevalent in the media I consumed, but they were, as they are today, “normal” things to hear. But just because something is de rigor doesn’t mean they are truly forgotten at all, even when they hold no special importance in the moment. Those words and memories are still in there, waiting for another train of thought to hook into them and pull them to the surface. It might be later that day or a decade away, but when you fish for something to carry you out of distress, sometimes you hook a poisonous fish instead.

A couple of months ago, I had a melt down that morphed quickly into a break down. I had spent the day cleaning and babysitting. I did have my mother around to help, which is why I was able to overcome my initiation problems, but this is still a major energy expenditure. By the time we got to the laundromat, my spoons were spent with several hours still left to go.  So when my niece put laundry in the wrong machine I snapped out “What are you doing” instead of a “That’s the wrong dryer honey.” She cried, and my mother responded with a “She’s still 4, you can’t expect her to know what to do.” And at that point the last spoons that I use to guard my thoughts was gone. I couldn’t stop crying, or saying horrible things about myself.

Instead of falling on the ground in a ball, as I sometimes do when I have a meltdown from spoon loss, I tried to latch on to something mentally to restrain myself from melting into a quivering mass on the floor in public. I needed to finish there instead of going home to melt in private, both because it’s less private there on cleaning days and because I didn’t have any more clean clothes. That was not a good situation, and pushed beyond the point that I could handle all I could reach were the “poisonous fish” in my attempts to keep afloat.

Aloud, I said things and used words about myself that I would never say in a normal state. I’ve reformatted my language so I don’t use the R-word, yet here I was calling myself one aloud in public. There was no filter left through which to moderate my speech, let alone my thoughts. As things escalated, the thoughts got worse even when the words got less specific. In that state, with nothing left to hold off the combination of anxiety and traumatic memory, my thoughts started regurgitating things I’ve heard in Tetris like reconfigurations.

Why didn’t they kill me when I was a kid and they could have some sympathy for it? Why would they keep such and expensive burden?  Why am I still alive?*

It’s a horrible set of thoughts to have. It isn’t about the sort of person my mother is- my mother is wonderful and doesn’t really understand how someone could intentionally kill their child with or without disabilities, and doesn’t even get why anyone was okay with the “I am Adam Lanza’s Mother” post. As much as much of my sense of worthlessness when I’m at a bad spot are an effect of the first two men she married, where my thoughts ended up going weren’t, as far as I can recall, a direct reference to my past.

It is, however, an internalization of the messages, responses, and dehumanization within our media. It’s every time a parent acts like having homicidal fantasies, masked in “mercy” language or not, about their disabled kid is “normal” or “natural,” every time telling them it isn’t is met with “you don’t know what it’s like.” It’s certain groups of people deciding it’s okay to lay blame at the hands of autistic adults for not giving up everything to put themselves between an autistic child and their would be/actual murderer- even when we’ve provided resources for those who are willing to listen. It’s every time the media calls reporting sympathy for the murder of the disabled making things “fair and balanced.”

These things are pervasive. And when something is culturally pervasive, it does become internalized. Even when you are someone that actively fights for cultural change, someone who can, if only in text, tell you exactly why and how oppressive structures damage people in our society. Even when you are someone who knows that the diversity of disability is evidence of humanity’s strength as a species.

If you think that these murders, or the way that our media talks about them, makes sense then I’m sorry- you are, as Beth said in her recent post, already at rock bottom. All I’m asking is that you don’t drag me and other people with disabilities down with you.

____

* Please don’t worry. I have support networks in place, I’m not actually in danger of attempting anything. I shouldn’t have to say this, but trust me I have family that will help me if I actually am at the point of needing to decide if the hospital is the right choice. And no, right now it is not. Thank you. 

I started this back in September(the “A Couple of months ago” was initially “a couple of days ago”), but it took me until today to feel like I had finished it. Originally I was going to link to writings on how media portrayals of this type of violence impacts how other people treat us, but was unable to work through it. Feel free to share links on the subject below. 

Decolonizing Our Voices

Today is Autistics Speaking Day, a day when we are particularly asking our allies and allies-to-be to step back to allow the voices of Autistics ourselves to be heard and listened to.

When ASD started last year (2010) we were in essence protesting an “awareness” campaign that people who purported to be our allies had designed and promoted with heavy pity language. They had asked people not to post at all, to be silent and non-speaking online to draw attention to the communicative issues many Autistics face. I believe our response was pretty understandable not only was this basically online “crip drag,” but it also denied the fact that for many Autistics, online resources such as social media sites have given us a voice.

I myself had great strides in my personal development after getting online. I know a number of people who are Non-speaking Autistics whose ability to communicate was greatly augmented by online resources, and a number whose involvement in virtual advocacy have made the people around them rethink everything about their care. In short, Social Media and other virtual resources have done for us what having a ramp in a public building does for our chair using brethren. (I will freely admit that it doesn’t solve all our problems, and we still face hostility online and off that prevents access just as having a ramp alone doesn’t make your building wheelchair accessible.)

This year, Autistics Speaking Day is taking place at a time when we have people in the streets protesting economic disparity and corruption. For some of the protesters, there are harsh economic realities in their own lives motivating them-  Homelessness, lack of accessible health care, and unemployment. Others feel that their voices as citizens have been infringed upon by corporate interests, particularly when it comes to our elections in the United States. Still others are driven by a need to undo injustice.

This movement of protests is popularly called “Occupy Wall Street,” so named for the action of camping- or “occupying”- public places such as Zuccotti Park in NYC or Mellon Green in Pittsburgh, or a wide number of other Occupying sites. However, a number of indigenous groups quickly pointed out that Wall Street has been occupied for centuries- it was originally Lenape tribal land.

So when their site started, Boston issued a solidarity statement with Indigenous Peoples, and were followed by a number of other sites. In light of this, some people have been using the term “Decolonize” rather than “Occupy” so that the voices of marginalized Americans- such as our indigenous populations- can be better respected and more easily centered.

People of Color are especially hard hit by the economic environment, and in a number of places the living conditions on reservations are deplorable. People with Disabilities too are feeling the economic burden our services are being cut, our programs redefined to limit our involvement in our communities, and supports being withdrawn under the excuse of “budget issues.”

After some thought, I’ve decided that there’s too much of a cross over for me in the work of Decolonizing Wall Street and of our voices as Autistics to not write this post today. While people in general are seeing their demands of their political representatives co-opted or diverted by corporations, Autistics routinely have our voices co-opted by our allies and diverted by large “non”-profits such as Autism Speaks. Many of us are frustrated by the lack of Genuine Voice that the general public hears from us. Instead of looking at the things that help us live our lives and improve the quality of it, research funding is sent to projects that could potentially prevent us from being born in the first place.

Indeed, when we speak we are dismissed using logical fallacies so that the voices of those who proclaim themselves working for our “own good” can be prioritized. Obviously, not all of our allies are like this. But some are, be they parents, professionals with pet theories, or Organizations whose bottom line would be affected by what we are saying. Those are the ones we are talking about when we talk about how our supposed allies need to step back and stop centering themselves.

The Protesters in the Occupy/Decolonize use  consensus building as a process. This does have flaws by itself- those with pre-existing privilege can still flaunt it- but there are some principles that can and at some sites are added to mitigate those flaws. One of them is the concept of “Step back, Step up.” This means for people who have privilege- white people, straight people, cis people, men, and so on- to take a step back in the conversation, and to encourage those without your privileges to step forward so that they can be heard- something that won’t happen on its own. Without taking this into consideration, the same hierarchies that divide us out in the world will be reproduced in our movements.

This saying is the reason I’m bringing up the consensus process in this post- because the conversations we are having in the Autism and Autistic communities need to utilize the same principles. Otherwise no matter how good natured and well meaning people are, those who have less privilege will not be heard. And to me, this Principle is at the core of what Autistics Speaking Day is about.  It is about us being heard when we try to step up, and about our allies supporting us doing that.

I’ve been involved from afar with the Occupy/Decolonize activities at Pittsburgh, PA’s site, working especially with the Marginalized Communities and Allies workgroup.  The Safety workgroup took most of my comments about safety concerns for PWD and added them to the safety document. I’ve been encouraged to stay involved in the processes and networks being formed.

Most encouraging to me is that our site’s working groups have been prioritizing ways for people who can’t stay on site to be involved. Instead of the sentiments that if you aren’t at an action you aren’t really committed that have characterized some other movements I’ve tried to be involved with, I have gotten reassurance. Paul O’Hanlon, a protester with disabilities who has been very active both on site and off, told me to remember that they know that every person there is representing people who can’t.

That isn’t to say that there aren’t people who assign high value to people on site. There are still people who fail to recognize that even when we are eliminating our class barriers that our other oppressions and privileges are still intact. There are still people who don’t get the anti-ableism, anti-racism, and so on work is still very much needed. But I’ve seen what feels like great strides. Objectively, perhaps they aren’t that huge, but for someone who has had their voice sublimated repeatedly it feels huge.

Just as as a young teen blogging, instant messages, and other internet resources helped me to gain a sense of community and skills, the internet is enabling me to be involved.  I’m someone who has not been able to physically be on site because of a number of reasons. I’m rural, I have to have access to certain services on a regular basis that would not be present on site, and I also have fibro Myalgia, which would make winter camping a mobility and possible safety hazard.

So I’ve been doing support work, editing virtual documents, and organizing accessibility work. I started a cross disability group called “Occupy Disability/Decolonize Disability” for people with Disabilities to network resources on both being on site and working off site. A friend with Multiple Chemical Sensitivities started #Occupy at Home to help people like us find ways to be involved. There’s even an “Occupy Autism Speaks” page to highlight the issues with that organization.

All of these things keep seeming to parallel to me the ways that Autistics have built community online when our physical environments have been barred to us. We’ve worked to create venues to be us in, to see the value of our forms of communication. To be involved as we are, not as others think we “ought” to be.

Today is the day we take back our voices. Now is a time when “The Whole World Is Watching” what is happening. Tomorrow is when we will continue to speak out- so please, keep on listening.

____________

When I wrote this, I was working along side Native and Black activists who preferred the Decolonize language over the occupy language for things to do with the various wings of the “Occupy” movement. I’ve been informed more recently that there are problems with using that, particularly since that context has passed, and won’t be using decolonize in this way in the future – Nov 1, 2013