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!

Why I Reject Autism Speaks

A couple of months ago, my brother sent me a text. Did I  want to go to the Autism walk with him and Em?

I did a quick google and found, as I had suspected, that the benefactor was Autism Speaks, and I responded in the negative. I also did my quick bullet points of reasons not to support them- not even the in depth version, just the elevator speech version. I also did another focusing on their media presence. Here’s a transcript:

Me: They promote a tragedy model of autism and act like the desire to murder your kid is understandable to have? Also they refuse to have any autistic people at all on their board and the one guy who was on their advisory quit because they didn’t listen to anything he told them. Only 4% of their budget goes to families. Most of the money doesn’t make it back to the communities it comes out of. Instead it goes to their media machine.

Wil: I see that’s lame as hell we were going to go but not anymore that’s way messed up.

Me: Next [time] you are on YouTube google Autism Every Day to see a mom talk about wanting [to] drive herself and her kid off a bridge IN FRONT OF SAID KID and not doing so because of her non-autistic child. Or the I Am Autism one where they took film from families not telling them that the voice over would be about autism destroying families. ❤ [heart emoji] Thanks for listening!

Wil: Yeah I’ll check ’em out thanks for the info. We were gonna take her parent’s car and go ‘n bring you along but after hearing all that we were both like nooooope.

This was one of the LEAST difficult attempts at educating people, and I didn’t even have to drop in too much detail.

I didn’t have to talk about their allowing the JRC to advertise at their events. The JRC uses painful skin shocks on students with disabilities. It deprives children of food as punishment for even small behaviors. It has been called a human rights violation by the UN’s torture investigator.

As for the guy who left their advisory: He posted an open letter when he left.  (He might still retain hope that they could reform, but I don’t.) It was the science advisory, by the way- not the board. I have seen some people thinking that it was the board, but it wasn’t- there’s never been an autistic on their actual board.

While I mentioned that only 4% (really less than) of their budget goes to helping autistics and our families, I didn’t go into details about how they spend more on catering. I didn’t note that “fundraising” makes up 25% of their budget, and Advertising and similar “awareness” another 30%.

I didn’t note that the research they fund goes towards eliminating people like me. I didn’t mention the prenatal testing research that they’ve supported, or how if they find a successful test it will eliminate people like me before we are born. (Similar tests for people with Down Syndrome? 9/10 times, the parents become convinced to abort the fetus, often due to misinformation about Down Syndrome.) I didn’t mention that their research projects don’t take privacy of autistics seriously. It doesn’t take the idea of autistics giving informed consent seriously either. Only between 1-2% of their research funding goes towards quality of life related research that would help autistics today.

I have a strong belief of “Nothing about us, without us.” And that alone would be enough for me to reject Autism Speaks. But the way that they treat us, the way that they treat hating us, pitying us, and getting rid of us? The way that they manipulate our families? That really does seal my rejection of them.


 

Please check out the #BoycottAutismSpeaks flashblog for other people’s reasons to oppose Autism Speaks.

Here’s the most recent letter from ASAN to Autism Speak’s Sponsors about why they should drop their support.

Here’s GoldenHeartedRose’s Master Post about Autism Speaks.

Here’s the stuff AutisticHoya has written about Autism Speaks.

Here’s my older post about rejecting Autism Speaks, “Why I’m Not Blue.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Stimming in Public (and Breaking All the Rules)

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

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

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

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

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

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

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

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

That is the project summary.

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

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

A Quick Update

It has been a while since my last post, and I have a lot of stressful stress happening. I do have plans for several entries this spring that I hope to get written, but I wanted to give a very quick update in the mean time. It’s my hope that I’ll manage to get a post out on each of these issues this spring.

First, a reminder: Loud Hands Project is still taking donations for 7 more days/until the end of march15th, 2012. The initial fundraising goal of $10, 000 to fund the anthology was met, but there are more benchmarks. If we can reach the next one, $15,000, in the next few days LHP will be able to do a documentary on Eugenics and Autism. That’s only about $1300 to meet that benchmark- and there are more benchmarks after that that you can read about on the website.

If you know me personally, you know that for the past year and roughly two months, I’ve not had a permanent residence. Thankfully, I’ve had family in my area who have alternated care of me. I stayed for several months at my grandmother’s last spring, stayed in a building owned by family that isn’t technically livable over the summer in a camping style, and since September have alternated between my sister’s and my mother’s. It’s very hard on me, and it is hard on my family. We’ve been trying, with the help of my Intensive Case Manager, to navigate the housing system, but with little luck. I’m hoping that I’ll have some resolution on this soon so that I can process some of it to share.

During the time that I stayed at the old house, I had an incident with sexual harassment that might be mentioned in another post. I thought at the time I was being targeted because of being poor, but my sister thinks that the fact that everyone in that little town is very aware of me being disabled was a factor. So I’m hoping to get a post on sexual harassment written. It would have been nice to have written it for International Women’s Day today, but I just couldn’t get it together.

I’ve gotten involved with a group of self advocates called Self Advocates United as 1. They asked me to join their board, and to become a trainer. I got a chance to visit a couple of state developmental centers to teach self advocacy skills for the people still living in the centers to use. It was a great experience. I loved being around other people with disabilities, and I learned a lot about audience participation and involvement from fellow board member and trainer, Larry Kubey. (Larry is also THE music man- he knows almost everything there is to know about pop music from the 60s on.)

I’m looking forward to an event in May where we will be gathering questions about moving into the community from the people from the centers who are looking to move in the next couple of years and addressing them to providers in the community. Hopefully, some of the myths and misconceptions people have about community living can be addressed, and help people feel more confident about their choice to move into the community.  I hope to have something on community living this spring or even early summer to share with you all.

I went to a specialized psychiatrist in Pittsburgh, and had one of the best experiences I’ve ever had with this type of doctor. The facility specializes in people with developmental disabilities, and the particular doctor I saw had a lot of books on OCD, Anxiety Disorders, and Autism on his shelves. Because I’ve had so many horrible experiences, I found it remarkable- as did my mother- and so you should expect a post on this next. Depending on my anxiety levels, I might even get it done this week or next.

It’s my hope that you can use it in a couple of ways: 1) to know that not all psychiatrists are going to be horrible. 2) to have an idea of what might or might not work for you to look for in your search for a psychiatrist that will respect you. 3) To show your psychiatrist or care provider that they don’t have to be so horrible.

Of course, I’ll also be writing a post for Autism Acceptance Day‘s blog carnival this year as well. I’m not sure of the topic yet- and one of the above topics might end up being my post for it- but I do have plans for it. It would be great to see some new writers contributing this year, too, and I’m willing to provide some basic support where I can if you want to try.

The last thing I want to make sure I mention is a little post I am planning on doing for Mother’s Day. I’d love to hear from people about their mothers, or about mother figures’ experiences getting unconventional expressions of love from their families to either share or link to in my post. I’m going to be talking a bit about how even though many of the masculine figures in my life perpetuated some serious abuse- which I’ve discussed elsewhere- how my mother worked hard to support me.

I think that this is especially important, not just because I want to recognize my mother, but because my Autistics Speaking Day post was initially mentioned (and since amended!) in a round up as pointing out parents/allies as the problem, and that wasn’t my intent at all. I think many parents end up coming into the support role with this idea that their voices and experiences are centered. That they are “the voice” of their kids rather than the facilitator of their kid’s “voice.”

And that’s true no matter what level of communication your child has. You are there to facilitate their needs and interests being met. And the role of facilitator becomes more and more just facilitating as your child grows. And now I’m ranting, and I’m going to end now. Basically, I want to reaffirm my gladness for my own mother’s support and facilitation of my needs, and in the process celebrate similar mothers/maternal figures who have demonstrated excellent ally-ship.

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.

A bit of this and that

My posts here tend towards single issue posts. I rarely post small things, or things I haven’t thought through or so on. (I use tumblr for that…) As a result, I post fairly infrequently- I post on big ideas that take a long time to find words for.  But I feel like I ought to post something, so I am putting this post together out of pieces. Maybe it will lose me some of the things that people think of me but… well, I need to think something of all this as well, don’t I?

So, you are getting a post abut my latest DC trip.

I came down via plane on Sunday. I had NARP meetings all day Monday and half the day on Tuesday. I went down to the Occupy/decolonize DC  site Tuesday afternoon, which I’m writing another post on.

Wednesday night was the ASAN 5 year anniversary dinner. I do have an album for pictures people took of me at the dinner on Facebook, but I didn’t have a camera myself. I believe that Melody Latimer is looking for photos from this event for the ASAN anniversary edition newsletter? (If you have any, send them to mlatimer@autisticadvocacy.org- or you can link/tag them?)

Savannah, a large white looking person in a grey dress and black kerchief over reddish hair, and Claudia Alderman, a short Latina woman, in a fancy dining area standing

Since I arrived early, Claudia had me help with some set up stuff.

I personally was a little exhausted by all the social-making there, though Ari Ne’eman’s and Sharon Lewis’s speeches were fabulous. I was feeling a bit overwhelmed and had stepped out of the room for Alexa Posny’s speech, though. The desserts included creme puffs shaped like swans and chocolate covered mousse shaped like mice. Corina did take pictures of our desserts, but Corina hasn’t uploaded her pictures yet.

I also got to talk to Lindsey Nebeker, Lori Berkowitz and her partner Karen Hillman, Corina Becker, Lydia Brown, Lauren Gilbert, Melody Latimer, Kathryn Bjørnstad and her fiance Sean, and lots of other people. Food-wise, I rather liked these spinach things? I also discovered that Scotch and ginger ale is better than just Whiskey and Gingerale. Who knew?

Nancy Thayler was given the Outstanding Ally award, and Corina and  Kathryn were awarded the Exceptional Services to the Autistic Community Award.

For anyone who was unaware, it was at the National Press Club in DC.  It was probably the ritziest place I’ve ever been, and I’ve been to a dinner at the Ritz in NYC before.

Thursday night, 8 Autistics and one Allistic (Kathryn’s Fiance) descended upon Lindsey and Dave’s house for a total of 10 Autistics for dinner. Emily Titon cooked a Mango Curry Chicken dish. It was interesting to have so many of us all in that house being community.

A view from over the back of a chair of a bunch of people of varying genders, sizes, and ethnicities on floors and chairs and both using and not using computers.

Scott and I on our computers, while Melody, Kathryn, and Lydia... Do other things while being all Autistic community-y.

At the beginning of the night, we had a bit of a show and tell about stim toys and stuff. Lindsey also graciously let us on her and Dave’s wifi. We spent time in a couple of different rooms on the ground floor. The food took a long time to make, but it was delicious.

a large white person in a colorful kerchief folded over themselves, barely recognizable from a pile of fabric, head on a pillow facing a computer, through the legs of a piano bench.

Between the Stim toy show and tell and later, I curled up like I do sometimes next to Lindsey's Piano. Lydia then took this photo.

The Next morning, I went to the Alliance for Full Participation conference with Emily and Scott. (Ari came later and helped facilitate a session.) The topic was inclusive employment, and it was rather interesting. I also got a chance to see my friend Bill Krebs while I was there, and introduced him to some ASAN people.

Speaking of “ritzy” places, it was held at the Gaylord National Harbor Hotel and Convention Center. Apparently it is the biggest Hotel and conference center on the eastern sea board?  I don’t know but there’s basically a whole village in the atrium. They do have nice couches? Though I sat on the floor  for the “Town Hall”. . .

Savannah, a large white person, sitting on the floor while wearing a brown cardigan and a colorful handkerchief, her netbook perched on her lap.

Sitting on the floor at the AFP Town Hall.

The Town Hall was HUGE- most of the seats were filled and I didn’t want to have to attempt navigating to find a seat since there were already people standing. The crowd was a mix of self advocates, employers/business people, and providers. It was… interesting.

I also had a few side conversations with both Scott Robertson and Betsy Valnes (at different times) via my netbook and word pad. In fact on my facebook the above photo is labled, “At the AFP Conference Using word pad to communicate in a load crowded room.” (Emily, who took the photo, labeled it “Savannah, looking lovely as always.” I think I look like I have liver failure and no sleep.)

Later on, in a break out session, I sat in a group that focused on starting your own business. It was interesting I Think. While in that group, because it was an anxiety producing situation, I used my netbook and word pad for communication.

I am not at the conference today- I need the day to decompress before I take the train home tomorrow afternoon. (And yes, I do love taking the train- it is less expensive than the plane, too!)

I hope this not-so-issue centered post was okay to read. I find that I don’t particularly find this post all that great, but I did want to get the little slice of Autistics having/building community out there, and wanted to share a DC trip with everyone.