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”

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To Raise Up An Advocate

In the fall, I attended an all-grantees meeting in Harrisburg, PA. I was there as a board member of Self Advocates United as 1, a disability self advocacy group which centers people with intellectual and/or developmental disabilities. Every one of our board members has a developmental and/or intellectual disability. I do other work with the group, but my purpose that weekend was in my role as a board member. I wasn’t well for about half the meeting, but towards the end I was approached by the woman who administers our grant. She asked me a question that I’m finally well enough to answer: how do we keep bringing in new youth? Did I have any unique ideas?

I told her I didn’t know if I had any unique ideas about bringing in youth with intellectual and developmental disabilities right now. There is a lot of organizing out there around youth issues, and I didn’t have anything especially new to add beyond referrals. But they aren’t really enough. Unfortunately many youth with these disabilities end up having either not been taught the skills involved at a young age, have overprotective and fearful parents/guardians hesitant to support their full participation, or parents that cling to the idea that their child or young adult isn’t able to do the level of self advocacy involved and that they must be their child’s voice forever. These are all really not the best outcomes when we want specifically youth voice from this population.

I did, however, tell her a little bit about what I thought could change this in the future. Here are some things that I think that we, as communities, systems, and as advocates, can do to make sure there are well supported youth advocates with intellectual and developmental disabilities in the future. Most of them are things that my own mother did for me, even when other people told her it was pointless. Some are things I’ve learned through observation of both self advocates and from parents. Either way, my experiences lead me to believe that these steps will  help.

We need to start telling parents when they first start out that it is possible for their child to become advocates. That even if they need extensive supports for the rest of their lives, advocacy is something that is important. It’s important in a personal context especially when you rely on others for your support. I’ve met few parents of kids and young adults with disabilities who haven’t worried what will happen when they are no longer the ones providing support. One of the ways to help mitigate the risks we have as a vulnerable population is to teach your child, starting young, how to advocate for themselves. Needing help understanding complex things, not speaking, or having extremely limited mobility don’t make it impossible to learn these things. Needing to learn it over and over again, or taking a very long time to learn them, doesn’t mean that they can’t and shouldn’t work on learning these skills. Self-advocacy is a survival skill. And a lot of the pieces that we learn in self advocacy can be used or built on in doing broader advocacy. 

We need to start teaching the foundations of these skills young. Let’s be honest- it takes a lot of people with disabilities like mine or like those of my fellow board members to learn things. Some of us need steps broken down a lot more, while others will just need taught the same steps over and over again, possibly for years. All of that is okay. It’s okay to take longer to learn things. What’s not okay is the emphasis too many people are taught on compliance based training- teaching skills that teach one to be more compliant and to eventually become an easier client to handle.

There are some other posts out there that can tell you about the effects of this kind of training and why it’s dangerous. I want to talk real quick instead about how this is contradictory to teaching advocacy, let alone self advocacy, skills. Compliance training, when it comes down to it, teaches you that the wants of other people are more important than what you feel you need- either to survive or to do your best. It also includes prioritizing the perceptions of others over your own lived reality- that other people are the authority on what you should do and what your life should look like so you should just sit down and shut up. You are taught to deprioritize your needs and your autonomy, starting with minor things and lead up to larger things like, say, if you are okay living in such and such facility instead of another setting, or working for peanuts. Additionally, your motivation to seek out alternatives is squashed, meaning that what ability to come up with your own solutions- which some of us might need support with to begin with- you have is made to stagnant. You end up being trained to be a better client, to be less “inconvenient” for those around you. You make yourself small.

ALL of these things are pretty much the opposite of self advocacy and advocacy skills. While we should be taught to consider others, it should be in making our own plans about our lives and how we can incorporate or work with the needs of those around us. It should be by trying to figure out how their experiences fit with ours rather than a substitution. And above all, learning to identify and come up with solutions to problems (and learning when we need help doing so) is something that can’t be taught effectively when compliance training is on the menu- and is one of the longer term skills that we need to eventually learn to be effective advocates. While some of us will always need extensive help doing these things, I fully believe that it is worth it.

We need to create situations of controlled risk- situations that are safe, but that allow both young people and our parents to experience risk and adjust to it. Risk is a part of being alive, of making our own choices. But there’s risk being taken even if we aren’t the ones making the decisions- it just somehow becomes more scary for parents when their children are the ones doing it. Slowly increasing the amount of risk we allow our kids according to what is safe is something all parents face. Acting as though those frightening parts of parenting- and yes, I understand that it is frightening!- don’t apply because your child will need supports the rest of their lives is not okay. By preventing (controlled) risk, you hamper the ability to learn how decision making works, as well as the realities of having consequences of our decisions. This doesn’t mean you do nothing to protect your child! It means that you need to be weighing from the beginning what the risks might be, and modeling the process of deciding what an acceptable risk is. It might start out with something very small, like the natural consequences of eating candy before dinner, and it might take a long time. But without there being any risk- even risk that you might be able to mitigate- we can’t really say that someone is making a real choice. Even if your child never gets beyond controlled and mitigated risk, it’s important to take that step and learn what both positive and negative consequences are and how to deal with them. You will end up feeling better about the decisions your child makes as an adult, and your child will have had the chance to become better at making those decisions.

We need to teach parents that part of their role is learning to switch from advocating for their children to either advocating with or supporting the advocacy of their children. When your child is young, you will indeed need to advocate for your child. Sometimes this part of being a parent lasts longer than others. But at some point you need to expect to switch to having your child become the advocate. Yes, there will absolutely be times that you will have to support your child, even extensively. Yes, there will be people who will not listen unless you, the parent that they perceive as “able,” repeat it. Yes, if your child has a very difficult to understand communication style you might have to act as or teach another person to act as an interpreter for the uninitiated. (My colleague Debbie and her daughter Amber- also a colleague- deal with this a lot when Amber does policy advocacy!) Yes, depending on your child there may be issues that have additional levels of complexity that they can’t quite get their heads around. But all of these challenges are why we need you to support our efforts, and to work with us.

Our opinions and perspectives are important when we talk about our lives. As your children become adults, we need you to understand that the work is not mainly about you- it’s about us, the young people with disabilities. You are our allies, not self advocates yourself, and we need you to respect that that is your role. It can be hard to hear that, or so I have been told by a lot of parents in a lot of different ways. But we want you on board. We want your support, your blessing, and, yes, your love. Though we will try to fight on without those things, we do want them from you- and as we go forward we, and the projects we tackle together, will flourish from it.

___

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AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.

Lists and doing them sadly

[Content: Mentions of Depression, of Partial Hospitalization programs, and of the feelings/enjoyment/good at charts?]

One of the exercises I learned as a kid about depression involved making a list of the Things I Enjoy Doing. There was also the Things I Am Good At list, and the These Faces on the Chart Match My Feelings Today list. There were lots of other ones, but I’ll stick to these ones because they are the Alternative Coping Mechanism lists.

When I was in a partial program, the day would begin with listing the feelings off the chart of faces on the wall, and this would happen at several points during the day- usually at any transition. Part of it was to track our self assessment, but it was also supposed to help us identify our feelings more accurately, and learn what the facial expressions were for them. If someone showed an emotion “wrong” the teachers would demonstrate “appropriate” ways of showing emotions. If someone chose emotions that flagged their depression screens, we’d have to add an extra thing to the “Things I Am Good At” list. I’ve also seen it listed as a “Strengths” list. Every day, we’d have to come up with 3 things we were good at. It was passable to repeat the same things most days (which I did- I did the same for the face charts most days) though coming up with new ones was a “good sign.”

If I remember correctly, my charts usually looked something like this:

Mood: Apathetic/Ambivalent

Savannah is good at:

    • Animals
    • Reading 
    • Art

I seem to remember a lot of “Ambivalent” on my sheets after a staffer explained what it meant. And I could list off those “Strengths” half asleep by the end of  my time in the partial program.

A lot of time was spent on the identification of “appropriate coping skills.” We had lots of sheets and stories on the differences between passive, assertive, and aggressive responses to things, but like several of the kids in the program I found practicing them difficult- I could repeat line by line the “assertive” response I was taught at home, but if it was my mom’s second husband this was a “behavior” and “manipulative,” so what was the point?

The other was the “Things You Enjoy List.” It was basically supposed to be a list of things you liked doing so that if you began to slip into a depressive episode then you could look at the list and do one of the things to remind you of good feelings- or at least put off the omni-present gloom of a depressive episode for a little while. At the time, my list was essentially as follows:

Savannah Enjoys:

    • Playing with animals
    • working with animals
    • reading
    • doing art

Seeing as how this is basically a re-wording of my “strengths” list, I think that I had quite a few frustrated staff trying to figure things out. I had a dog, maybe more, at home at the time (my pet timeline and my treatment timeline aren’t ones I have attached to each other to be sure,) and I sometimes would volunteer with the support of my Theraputic Staff Support at a local hab aide riding facility. (Though I think that might have been after the partial program…) Since they were trying to teach me social stuff too, having me go read to myself in the corner wasn’t exactly feeding into the treatment goals that had been developed, and there’s only so many times I go from group art session into hyper focusing on my own project to completely miss the group part before they throw their hands up in the air.

The one exception was in the summer when an additional word was added: “swimming.” We would “field trip” once a week if we were there during summer sessions, and usually it would be to the pool. While there was some supervision, it wasn’t close enough to tell the difference between playing with other kids and playing in the midst of other kids in the pool. I lined up in lines to jump into the deep end more because of knowing that if I didn’t the life guard wouldn’t let me jump in at all. But as the pavement left my feet and I plunged into the pool, it was heavenly.

I get why they made us do these lists. One of the things that always ends up on the “things to help with your depression!” lists is “do something you love/a hobby.” And it’s good advice- unless your depression manifests itself by making even things you love unappealing. You know that you really enjoy super heroes, or crime shows, whatever, but when you scroll past them on Netflix or Hulu none of them seem interesting, nothing appealing. You got a whole big stack of Forensic Anth style Crime novels, but starting that first book seems … unsatisfying. You have a massive knitting project that you loved when you started, but you went on hiatus and now that it’s been a while you can’t remember why you enjoyed it.

At least, that’s what it’s been like for me for a while. It’s pretty much horrible- I love being able to invest myself in something I love, completely zone into it for hours and hours on end. I like to hyper focus, to learn a ton of facts that only seem important to me, to have access to knowing everything about such and such a thing, to watch every episode, read every book, listen to every song in a completest fashion. And a lot of times when I’m depressed, it robs me of that. I can’t even get started on binge reading the Tudor book I picked up a few months ago and was so excited about.

For a while, I was working on this by baking once a week regardless of if I felt up to it or not. This worked best with cookies- They are pretty basic to make, but you can also make them as complex as you like. I’m a pretty good baker according to the people I feed, and when I complete something there’s a tiny pop of having completed something- almost like the feeling of gaining experience points in an RPG.

So I know that actually following through can help stymie a depression spiral. The problem is actually following through on doing things. And when impaired Executive Functioning mixes in, identifying those things in the moment is just that much more difficult.

So I’m going to do a bit of a sad list here of things I know I enjoy, but which I might forget about. I want to take this idea that was used a little awkwardly for me in a treatment setting, and rebrand it as my own and as an assistive tech of sorts. If you are reading this and want to join me, feel free to do so whatever way feels worthwhile for you.

This is about helping you. It isn’t about making others feel better about your depression/anxiety/etc. It’s about having a tool to help yourself. The things you write down only has to be things you enjoy, and as long as it isn’t harming others it doesn’t matter what it is. If it’s flapping and rocking for hours, that’s fine. If it’s meowing in your room, that’s cool. This is about you and what might make you feel good, not any one else. Yes, you may want to have a safe, private area to do them (you don’t want to harm people or subject yourself to undue risk/the law) but they are still for you. You can do them in whatever tense you like. I’m doing third person partially because of familiarity, and partially because I want to break off the connection between writing about my care plans in third person and leaving them in the control of service providers and staff who might or might not have my best interest at heart.

Things that Savannah remembers enjoying that she might forget:

  • Baking things. Savannah likes baking things. Cookies are easy.
  • Cooking for other people. This sadly requires other people, as cooking for herself is a different set of brain ordering and decision making, so Savannah rarely makes complex dishes just for herself.
  • Going to the coffee shop to write. Savannah likes the coffee shop and the people there, and even though Savannah is nervous about actually interacting with people who aren’t on her “safe” list outside of advocacy contexts she does like being around people in small to moderate amounts when non-scripted interaction isn’t needed. 
  • Writing. Savannah likes writing, but she can’t get started much of the time because of her Executive Functioning issues and/or self-consciousness. 
  • Savannah likes throwing things when she is frustrated. Savannah has soft things that she can throw in a room safely, so that she doesn’t harm people or objects in doing this when she feels she needs it. 
  • Savannah likes Earl Grey Tea, especially in the Star Trek Mug. The steps in making EGT are: 1) get out cup 2) get out tea bag 3) put tea bag in cup 4) put water in electric kettle 5) turn kettle on 6) wait 7) electric kettle clicks off 8) Savannah pours water over tea bag 9) tea steeps 10) add a little almond milk 11) drink tea. 
  • Crime novels. Savannah can either read them or listen to them on audio book from the library. Savannah has a big stack of Patricia Cornwell books to read. 
  • Sci-fi and fantasy stories. Savannah likes sci-fi and fantasy. Even though she is tired when the TOR.com newsletter comes, she should try to remember how much she enjoys the short stories in there. 
  • Savannah likes vocalizing. This is not the same as talking, but can including singing. Meowing, purring, beeping, meeping, and screaming all are examples of vocalizations that make Savannah feel better. (The screaming is better for up at Her mom’s house in the woods though.)
  • Savannah likes the recumbent bike. It doesn’t put stress on the joints the way that other equipment does. But Savannah both has difficulty getting to it, and has a hard time seeing it as a priority. She also needs to be careful not to over do it, especially when she has stuff to do the next day.
  • Savannah likes certain TV shows. This includes, but is not limited, to: Doctor Who; Law & Order (various incarnations); Criminal Minds; CSI (NY or Original); Bones; Agents of Shield; Sleepy Hallow; Project Runway; Castle; Eureka; Warehouse 13; Numerous genre stuff that the BBC puts out; regency-ish period dramas; American Pickers; Oddities; and so on. 
  • Savannah has a lot of youtube channels she watches. She does like the science ones a lot, but she needs to remember that she also likes the non-science ones she’s subscribed to, so maybe she should watch some of those beyond vlogbrothers and weezywaiter. There’s nothing wring with liking the science channels, but Savannah is often pleasantly surprised when she follows through watching the other channels too. 
  • Savannah likes genre movies. She often forgets about watching them because they seem like more energy than they really are. It is okay is Savannah doesn’t remember what the movie was about later, too. It’s okay to turn it off half way through if Savannah decides it’s actually bad and it’s not about trying to watch it like normal people. It’s ok to get distracted and wander off while the movie is running. 
  • Remember: Savannah particularly likes watching Super Hero Movies, Period Dramas, and The Decoy Bride. It’s okay for Savannah to watch Captain America or any movie as many times as she likes as long as she gets her work done and she falls asleep before sunrise. 

Okay, that’s my attempt at an undated and more useful to me list. What does yours look like?

It Goes All Ways

Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities. 

When I was 20, I did not love myself.

I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.

I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.

“What about having kids some day?”

I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.

People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.

To be clear: I know plenty of people who have chosen not to have kids.  They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.

I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.

Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.

I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.

About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.

My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent.  During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.

I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.

There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.

Fertility treatments can be harder to get when you are disabled.  While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%).  Adoption, too, is more difficult.

And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)

I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.

I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.

This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.

I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

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

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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.

Inside and Outside Safety

[Content warning: Mentions of violence towards PwD, both external and internal. Passing mention of the R-word and of a cat dying.]

“If you are silent about your pain, they’ll kill you and say you enjoyed it.”

 -Zora Neale Hurston

I think sometimes when we talk about “passing” versus visibility we forget what that really means, what it is really about. We forget that it means a choice between being safe in the out there instead of being safe in the in here.

It’s a process of making a difficult choice for some of us. Which will destroy us sooner- the violence that others do to us or the violence we do to ourselves? How long do we defend ourselves from the violence that other people send us before we end up destroying who we are inside? Can we live in a world where we can be safe in our own heads without endangering ourselves from the violence of others?

A number of people have written about what it is to internalize oppression- ableism in particular. There’s one phrase I’ve seen that always strikes me- “outposts in our heads.” The place I remember coming across it was at Amanda Bagg’s blog, when it was used- along with the Sally Kempton quote- as the title of a post. Outposts in Our Heads was a big deal for me when I first read it back in 2008. It helped me form into language the things I was noticing about my own experiences, my own terrors, my own damages.

When we internalize the messages that tell us we are unreliable narrators of our own stories, that we are “bad” and “wrong” when we exist as ourselves, it creates violence inside of us. It’s not the physical kind of course- though sometimes people do hurt themselves as a result of this “inside” violence. But that makes it no less violence, no less an attack on our beings.

The more I reflect on my own behavior and the writings of others the more I feel as though a lot of our passing comes from this violence that has been pressed inside of us. Our passing is  an expression, in part, of the thousand little insidious things we were taught.  To remind ourselves that we are wrong, that we are “slow.” To remind ourselves that we don’t count as humans unless we take these “lessons” to heart.

With those lessons is one that gets pointed to as the “reason” for them, why it is so “needful” for us to find indistinguishable. Why the parent I will sit next to in a meeting next week will tell me that they just want their kid to have a shot at pretending to be normal. The outside world is violent towards us when we don’t accept these things, sometimes in more obvious ways.

I don’t think we have to go far to “prove” them their theory on how unsafe it is for us. Neli Latson‘s arrest- Young, black, and Autistic Neli- is proof in an of itself, however much it is also tangled up in racism. The bullying of kids who rock and flap are constantly held up against the bullying of queer youth by some parents, the violence that both populations face sometimes used to outline how bad it is not to pass. Sometimes I even hear the statistics about how 70% of women with developmental disabilities experience rape and that is used as an example of why we shouldn’t be obviously disabled. (Sometimes I even hear this from people who would fiercely remind you that how a person dresses or what they drink doesn’t make them responsible for the violence done to them.)

These things are brought out time and again, these dangers of the world. And too often- particularly when it is our families rather than disabled people ourselves- the solution offered is to teach us to pass. To not behave or exist as we are. To make eye contact and don’t flap or rock in public or don’t jump at loud sounds.

The solutions offered to individuals too often aren’t to make it so police know what to expect from Autistics (as well as unknowing the stereotypes of race), to end bullying through truly inclusive practice, to teach people not to rape and sexually assault people.

We are told that in order to save ourselves from the violence out there we must do everything we can to look normal out there.

And when we do look normal out there, they pretend that no violence is being done to us. Too often, they forget the violence that they did or dismissed to make us this way. Too often, they will always dismiss that it left us with violence in our heads.

As time goes on I try to unlearn the violence that was taught to me. I try to uproot the strongholds that tell me how wrong and bad it is of me, how selfish, to want to be okay with myself. This process isn’t helped by living in a society that reaffirms that all the bad things are because I’m wrong, I’m deviant, I’m disabled and I dare to try not to hide from it.

In June, I attended the Allied Media Conference as a Co-track Coordinator of the Disability Justice Track with A’ishah of ResistDance. Admittedly there were huge chunks of things that were issues in the physical world- for example, some people not getting what “scent free” meant, or staff members forgetting that sharpies can be toxic for some folk, or how incredibly echoy and not sensory friendly having closing ceremony in McGregor was. But the biggest thing for me had nothing to do with my external environment.

It had everything to do with my internal one. I was working so hard at uprooting the ableism inside of me, and yet while I was there surrounded by movers and shakers and hopeful justice makers I found more. I spent a couple of hours one afternoon sitting in a corner, crying and rocking and holding my arms tight. My outside was safe enough- someone even gave me a tissue as they passed. But on my insides the violence I had worked so hard to uproot from my mind was taking over.

I was alone and unworthy and bad girl. Of course you are having a hard time, I thought, you are wrong at the most basic level.  Remembered directives of Stop Crying and This is for Attention isn’t it? and You are selfish for wanting to be safe and everyone knows that retards can’t lead.

I eventually got settled enough to move, to look for my mum in the Healing Justice Practice Space. When I got there, though, it was obvious in ways I couldn’t know that there was a violence happening inside of me to some of the healers. I had some tea, and Mariposa had me do medicine on my self by way of chalking protection at my wrists. It is protection from the elements of the outside that give power to the violence inside, she told me.

And I did come back to me, to knowing that I am worthy and human and deserving of existance. To knowing where those thoughts were pressed into me from. To knowing that it is a violence taught to me.

I won’t discount that the violence outside of me is painful. I can’t pretend that I wasn’t devastated when the neighbor shot my cat Tribble knowing that he was in training to be my therapy cat. I will never deny that there’s still a spot on my back that when pressed makes me panic, to think that my mother’s second (ex)husband is going to put me in prone restraint again. But I think that the most devestating is the ways that violence is pressed inside of me.

I’m tired of doing violence to myself inside of me to avoid the violence that could happen outside of me. I’m tired of having no safe place inside of me because someone might believe that the demonstrations of my disabled person-ness gives them license to grant violence to the external face of me. I don’t think it’s right to give in to demands that I pretend that passing doesn’t hurt me.

This afternoon, I’ll go shopping. At checkout, while I’ll smile at the register and answer questions from the check out person, chances are I won’t make eye contact. Chances are I’ll startle when someone shouts or drops something. Chances are I’ll flap in line, wander in a way someone else’s parent would characterize as aimless and pathological, cover my face or eyes or ears when things are “too much,” flinch when someone touches me in passing unexpectedly. I’ll stare and not be able to process a shelf display or two, and forget how much I need to get some bottled water because it looks like there’s so much stuff in the cart already.

And I will  be safe.

_________

This Post was inspired in part by “Dear ‘Autism Parents’” by Julia Bascom, as well as other writings of her’s at Just Stimming. I highly recommend going over there and reading more of her stuff. I also want to direct people to the writings of Amanda Forest Vivian at A Deeper Country whose writings have been helping to “percolate” these thoughts all summer.

This has been reprinted at Shift Journal.