New Year~ aka, That Post Where I Talk Difficulties in Goal Setting

Hello folks! This is a more informal post than usual, so your patience is appreciated and I promise I’m working on a post more typical of my blog for sometime later this month! [Note: contains some mention of abuse and PTSD.]

I have a big goal this year- the same goal I had for my Birthday, and for Rosh Hashanah: write more. I enjoy writing, and I enjoy the feeling I have when I hit publish, and yet I write so rarely. Part of this is executive dysfunction, part of this is depression, and part is anxiety. Lately, I often find myself using the excuse of “well, if I’m doing so well right now, I ought to use that exclusively on work stuff!” any time I have more than a few minutes of good processing power in me. (In fact, when I’m done with this post I’ll probably work instead of doing any of the zillion things I should be doing for myself, being as how it’s technically winter break. Oops.)

If I have to quantify this goal- because I’m really trying to train my brain to think in SMART goals as well- I’m aiming, as always, for 12 posts minimum in 2016. I hate quantifying my yearly goals though. When I fail, there’s this wave of “not okay” that comes over me. Back when I did weight related rather than action related goals, this would trigger an eating disorder behavior of some sort.

But the big thing is really PTSD related. Any time I fail at anything- even something small that other people aren’t really bothered with- I have Rick’s voice in the back of my bead going, “If you weren’t so smart, we’d lock you away.” “We should lock you up, you are worthless.” “I don’t know why we bother keeping you at home.” On bad days, it leads to a dissociative episode. And really, this is usually UTTERLY disproportionate to the stimulus that triggered it, because that’s how PTSD works. Having a spelling error pointed out at the wrong time has lead to hours long episodes- I still work, in fact that might be all I do other than cry and repeat bad mantras, but it’s still there. I’ve had larger episodes that have faded in and out over a week. It’s ridiculous, really impacts my ability to behave professionally, but it’s also uncontrollable. I’ve gained the ability, slowly and over time, to make it more something that can be hidden behind the computer screen (thank you telecommuting- there’s no way I could last in an in person office at this point.) But even that doesn’t always work, because of the nature of a dissociative episode makes it even more difficult to conceptualize what works in a reasonable turn around. It, in short, sucks.

There are other general goals I have too, but they are perpetual ones that I always have. Leave the house at least once weekly, preferably more often and under my own steam but once with help satisfies it. If I don’t, the agoraphobia sets in heavily. It becomes increasingly difficult to leave, particularly under my own steam. Even my ability to call anyone on my very short “safe” list gets smaller. (Currently, the safe list is my parents, siblings, niece, eventual-BiL, and best friend.) And while I’m not always successful- thank you mix of mental health wackiness and chronic illness- It’s something I continue to try to work on, with no end in sight.

Speaking of, one of the things I’m going to aim for today? Walking to Sheetz in my town. (I made it to one of the pubs last night, though I got out before the NYE celebrants started showing up en mass.)

Heavy pale red headded femme in a Tardis Dress, Tardis head band, lots of makeup, and steam-punky jewelry in a pub

Here I am around 7pm New Years Eve about to leave the pub I made myself go to to fulfill my goal. I had the bouncer take this so I had a picture of the dress on me. [image description in alt text]

Try to work on phone phobia is another perpetual goal. This week, I actually called someplace to order food- and it was a big deal. I’m going to call my best friend, who it’s become harder to call, when I’m done with this paragraph. (Thank you new year for the scripted calls you make possible.) This aspect of my mental health disabilities is a particularly disabling one, both personally and professionally. Some of this has improved as people in general get more comfortable with ascribing meaning to online interactions. Some of it I’ve developed accommodations for myself, though the willingness to implement those accommodations is hit or miss, even in the cross-disability community. People just don’t get that I can speak on a webinar or scripted/semi-scripted telecast but can’t handle an actual phone call with ease. It’s an entirely different format to execute for me, but it’s still a struggle.

This is a thing that I’ve decided to work on- even though it’s disability related, and even though I still try to implement my accommodations. Sometimes it feels even more difficult, because too many people don’t get that the ways you are disabled fluctuate depending on a lot of- and sometimes difficult to identify- factors. But it’s something that seems an area that I want to work on, which is reasonable to work on, and which comes with many opportunities to celebrate small steps and have it understood by my fellow phone-phobics and phone-averse people as to why it’s worth celebrating, and why it’s worth working on. I don’t know if I’ll ever reach a point where the phobia is completely gone, or where I don’t need any accommodations sometimes, but I do hope that I can get to a point where I can still grit my way through the times where people aren’t willing to work with me about it.

(Aside: AH VOICEMAIL. What a glorious invention.)

I forgot one thing! And this is for you too! There’s an Instagram challenge that Two Thirds of the Planet is instigating this year called #365dayswithdisability! Just post a picture of your disabled self/life every day with the #365dayswithdisability tag on Instagram (or twitter, Insta is kind of hard to access if you don’t have a smart phone!) My personal Instagram is @nicocoer if you want to follow me!

Anyhow, I hope this post made you think about your own difficulties with setting and completing goals. Feel free to share those- or even just your new years goals!- in the comments below. Happy 2016!

Run down of #CrippingTheMighty

This morning I spent a lot of time in the #CrippingTheMighty hashtag, finding blog posts about it, and getting a good sense of what is and isn’t going on.  Below I have an overview of what’s going on, followed by links to posts from the disability community on the issue. If you’d like yours added to the list, please comment!

What happened

The Mighty is basically disability content aggregation- think BuzzFeed, but on disability. Some of their posts are reprints or re-formats, some are original to them. From the beginning, different disability bloggers have felt uneasy with The Mighty, and those feelings have become progressively stronger.

On Sunday, December 20th, 2015 the disability community hit a tipping point in their opinion of The Mighty when it published a post called “Meltdown Bingo.” This post attempted to be humorous about an autistic meltdown using the Bingo meme, but instead ended up othering. The key issue with it was that it focused on the observer’s perspective and feelings, not those of the autistic having the meltdown.

While “Meltdown Bingo” was this breaking point, it merely is an example of the much larger issues with The Mighty that the community identified. The Disability Visibility Project’s Alice Wong then started the #CrippingTheMighty hashtag in order to address these issues.

What’s Wrong

Many of the issues come out of the aggregation approach that The Mighty has. For Aggregation sites to be successful, they need to have clickable content- mainly “clickbait”- that is likely to be seen. It can also have viral potential, either by addressing a timely or important issue or by tapping into an emotional experience shared by the target viewer. Unfortunately a lot of the content that is easy to source that fits this description in the disability community is content that is harmful.

From the beginning, The Mighty has been plagued with complaints that they are an inspiration porn mill. Inspiration Porn is a big problem when it comes to disability related content. Typically it takes something relatively normal that a disabled person is doing, and frames it as inspirational merely because the person is disabled. Another format, and one I’ve observed increasing lately, is the encounter between the abled person and the disabled person that gives the abled person a chance to do something “good.” In this version, the disabled person is even more of a prop than in the former, and could be replaced with a leg shaped lamp rather than with a cute puppy without substantial change in tone.

The other problematic- and possibly more damaging- content type is the warrior mommy blogger content. Beyond the fact that it centers parents over disabled perspectives, it frequently is focused on bemoaning how hard it is to parent a child with a disability and on throwing “pity parties” for parents. This is a dangerous narrative, as it normalizes negative and even aggressive narratives of parenting, which can end in tragic outcomes for the children of the parents that buy into it.

Additionally is the pathologizing and/or othering of the disabled child, down to the minutia of their lives. Under this framework, being respectful of the humanity and even the privacy of the child is ignored, and intimate details end up being published. Things that the parent would never post about themselves or about their non-disabled kids become public knowledge.

There is very little evidence that the editorial team has made an attempt to reign in this harmful content from contributors, until enough people protest individual posts.

While the Mighty has published some disabled bloggers, the decent content from these bloggers is drowned out by the other content on the site. Additionally, these bloggers have mentioned that they are often repeatedly asked to edit their content to be more palatable, more inspirational, and less difficult. Those who still end up putting out content that challenges the medical model and othering narratives end up being bombarded with comments from the community that has formed around the able-written content attacking their post for being too “negative” or not “uplifting.”

The summary of the issue is that The Mighty publishes content that is about disabled people, without disabled people. It fails to respect the humanity and privacy of disabled people, and treats them as subjects rather than as people. Attempts to challenge this is shot down by a community use to having their biases catered to on the site.

The goals of #CrippingTheMighty

There’s some misapprehension that this is an aimless protest, or that the goal already happened when The Mighty removed the “Meltdown Bingo” post and apologized. This is incorrect on both points. The short version is that the #CrippingTheMighty is asking for true reform of the site’s content and editorial policy, with the alternative of a dissolution of the site itself.

One specific ask is to increase the percentage of disabled writers so that parents are not the primary voice heard on the site, and so that disabled perspectives are centered. There is a secondary ask that is being floated for potential ad revenue to be shared with said disabled writers, whose work ought to be valued.

Another ask is for the editors to tighten the editorial policy so that harmful content is less likely to make it to publication. While this ask is focused on the warrior mommy type content referenced above, it also is intended to cover content that treats disabled people as objects. For example, instead of content that focuses on how great an abled person felt seeing a disabled person do something or doing something for a disabled person, it could aim for content that talks about uplifting interactions from the perspective of the disabled person. This isn’t an impossible ask- among the disabled-written posts are posts that fit this narrative.

An over-all shift towards a site wide perspective that centers disabled voices and perspectives is the biggest goal of #CrippingTheMighty. It seeks to bring the concept of “Nothing about us, without us” to the representation presented on The Mighty- and, when we get down to it, to the broader media environment.

Links

Below are some links that the disability (and allied!) community have written about this issue. While I wouldn’t always use the approaches some folks do because of my personal style, they do all have the basics of the issues written about above.

Why I Dislike The Mighty & Better Alternatives for Parents…. by Lei

The Mighty: Apologize For The Harm You Do to the Disability Community! by PACLA (Note: while in petition form, this could stand alone as a blog post)

Two Ethical Futures for The Mighty by David Perry

Thoughts on #CrippingTheMighty by The Crippled Scholar

CAN U NOT: A Twitter Ode From Me To The Mighty by Emma Pretzel

Open letter to The Mighty by Un-Boxed Brain

Why I’m not in love with The Mighty by 21 + 21 + 21 = ? (Parent of a child with Down Syndrome; Written in May 2015)

Why I’ve Had it With “The Mighty” by Meriah Nichols (published November 2015)

Meltdown Bingo: Autistic Edition (aka, a meltdown from the inside) by S. M. Neumeier

Neurodiversity Vs “the Mighty” by Michelle Sutton

My Response to an Appology from The Mighty by Holly

The Mighty thinks they want a conversation. by K. of Radical Neurodivergence Speaking (note: contains cuss words!)

#CrippingTheMighty by Paginated Thoughts

There are stories about people with disabilities that truly inspire me, and then there is inspiration porn. by IAmTheThunder (Suggested guidelines here are important for ALL people writing about disability, not just The Mighty!)

A Letter to the Editor of The Mighty by  Kimberly Faith

About The Mighty – my thoughts as a contributor AND The problems with The Mighty, and my suggestions for improvement by Carly Findlay

An Open Letter to The Mighty by Cara Liebowitz

Please, listen to our voices by Nora

What Do I Want From The Mighty? by Autistic Vegan

Why can’t we all get along?!? by Leah Kelly

Some Real Talk About The Mighty by s.e. smith

Storify of the hashtag by Alice Wong

 

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!

Changing Normal

I’m having a really hard time and for once, it’s not really about my brain. Or it is, but not in the usual way.

This past spring, I was travelling a lot for my state level work. My state capitol is about 5 hours drive at the rate at which I normally travel. (For those that don’t know, Pennsylvania is a huge state.) For a large chunk of the Spring I was going down every week, and when I wasn’t it was every other week. By the time June hit, I started having some really strange symptoms. I was having random fatigue, cognitive fuzzy episodes that weren’t affiliated with fibro flares, and confusion. At first I thought that maybe I was having seizures, but it wasn’t QUITE matching up with seizures and I’d had an EEG in the past year or so.

And then the symptoms got worse. I was falling asleep at random times. The episodes I had been worried about were escalating. I had never been able t o just “go to sleep” at night, but now it felt like I had no control over when I was awake or asleep, and sometimes I felt like I was asleep while awake.  This was something I recognized. My mother has them if she isn’t obscenely strict about her diet and exercise.

I don’t know for sure that I have the same thing she does. But I do know that the drug that treats it almost completely is something that my MCO covers, I have a family history, and it fits. We’ve started the process. I’ve had the first sleep study and have a heart monitor test being scheduled. Unfortunately it is a long diagnostic process with a lot of things to rule out. And that’s the problem.

The symptoms have eaten into my quality of life, and knowing that something could help but that I’m looking at 6 months to a year of tests is making me miserable. And really, there’s nothing that I can do to change it. I just need to hang on and pray that it doesn’t tank the opportunities I have right now.

There’s a concept in the disability community called “new normal.” It basically means that, if you acquire a disability, you are going to have a new baseline in life. Human beings are amazingly adaptable creatures. It’s one of several advantages of our species. Once given a chance to adjust, we live. Eventually it’s more  than survival, it becomes life. Morning cup of coffee normal. Taking the dog out to pee normal. Eventually, rolling in a chair becomes normal. Using a cane becomes normal. Taking medication every day becomes normal. You learn new ways of doing things. You adapt. It can take a while, but eventually, it becomes normal.

It’s really hard when you’ve adjusted to your own normal, and then you get another new one. And this one is harder than when the fibro and the joint damage from the hypermobility hit. I really missed dancing and I missed that I used to be able to push myself without hyper extending and hurting myself. I missed that at one point in time I could walk from Foggy Bottom station to the Capitol via the reflecting pool when visiting DC, but now I can’t walk around my small town for an hour without injuring myself enough to be out of commission for the next couple of days.

But adjusting to not being able to have confidence in my schedule is a lot worse.  I slept from 5am until 9:30pm yesterday, and was still in a fog. I’m frequently sleeping between 12 and 18 hours a day, but not always. Some days I can’t get my self to sleep all the way, just to that stage between being awake and actually sleeping. And then some days I end up with a normal sleep schedule. Some days I’m on the ball, and there’s no real fog beyond the fibro fog that I’ve gotten used to. It’s the uncertainty that is making me feel defeated, more than I ever felt with my other acquired impairments.

It’s hard to change and to adapt when  you have no clue, and when the things that let you still engage with life won’t cut it. When I’ve been having fibro episodes or GI episodes, I could always participate in the world online. It’s one of the advantages of some of the work that I do- being a social media specialist means I can work from bed if I need to. I can even work from a bathtub filled with epsom salts if it’s bad. But that doesn’t work here.

Thankfully I’m a workaholic and catch up easily, but that doesn’t help the missed phone meetings, and it doesn’t help if I fall asleep in a meeting when I travel. Thankfully I know enough ahead of time to get out of dangerous situations- it’s not at all like the movies thank goodness. I usually have a half hour warning when I start to feel an episode coming on, I’m not going to leave the oven on or drive off the road or anything like that. Additionally, my service dog knows enough to warn me if I’m not in a safe position well before I even know. And the times where I’ve fallen asleep in public- for example, I missed the chronic pain session at SDS because I couldn’t wake up from my “quick nap” after lunch on the couch in the vendor area, which I attributed at the time to chronic pain- she’s stayed right by my side to keep me safe.

But I can’t always count on people understanding that this is out of my control until we finish the diagnostic process. Even people who are 100% understanding about my trauma stuff, or my pain stuff, or even my being autistic stuff won’t necessarily get these particular symptoms. It’s difficult to look professional and engaged when you have no control over if you are alert or not. It’s difficult for people to get that I can be passionate about things and still end up sleeping and drooling (and not wiping it up before people can notice like I normally do) on the power point print out. Usually I can get around that in the moment- I’ve done it, pushing an episode off an hour or two- but it has consequences that aren’t ones I can do  full time.

Thankfully my travel schedule is less hectic right now. Thankfully I’m IN the diagnostic process. Thankfully we have some idea (thanks family history!) of what it is. Just… pray with me, if you do that sort of thing, or send out good energy/thoughts, that it is indeed narcolepsy and not something less manageable under modern medicine. Because otherwise the adaptation might mean changes that I won’t be able to be supported through, and that could derail this already adapted course I’m on.

The Horror in the Asylum Walls

There’s a lot of really good critiques of the asylum horror trope. They are very legitimate, especially within the context of the typical mind and the societal approach to the “mad and mentally infirm.”  The general consensus seems to be that they rely on the idea that the horror stems from being “in there with THEM,” where “them” is the disabled other.

For me, I’m drawn to them and feel the horror in them for a different reason. For me it’s nothing about being in there with a disabled them. I already AM the disabled them, the one that was called dangerous and segregated out. I kicked, screamed, and clawed my way out of that segregation, but I’ve carried that along on my back since childhood. They are not an other to me- they are family, and not the kind that holds you down for your own good.

For me, the horror and the fixation, the draw, comes instead from the individual realizing the truth of what we do to people like me.  Our protagonists are being subject to these things, things that are really things that I can be afraid of or have faced. It is a real horror, and one that permeates my fears already. It is terrifying to have your life and freedom held, controlled, by people who refuse to see you as a full human. It is terrifying to have people give you medications you don’t understand “or else.” It is terrifying to try to escape those making you feel unsafe only to have it end in restraint. It is terrifying to have people act as though the terror your experiences have told you is warranted is “just” in your head. It is terrifying to go to demand your rights and have the doctor add it as a symptom in your chart rather than a violation.

Witnessing that, to me, is terrifying, similar to watching a dramatization of a real serial killer case. It is a real thing that really could have happened to me. I could have been locked away- my mother was certainly told to do so enough times. I could have had to fight for years instead of weeks or months. It’s a gut deep fear.

My mother didn’t lock me up. She fought hard to keep me in the community. But that doesn’t mean that the fear doesn’t lurk in my nightmares. You have that hanging over you for years and that fear nests there.

I do a lot of peer education work around self advocacy skill building, including sharing with people living in thestate institutions in my state. One time I was visiting one of them in order to present. The institution had a cottage on campus that was set aside for families from a distance away visiting their kid or other relative. (The building for families? Not wheelchair accessible. I guess they just never expected a family member to be using a wheelchair to just visit.) The institution offered it to use, to cut costs of hotels for our group. We got into the rooms and I melted down. As much as I knew that I wasn’t there to be locked up, the lurking terror from my childhood came to me and wouldn’t go away. I had no way to sooth them there. The room was hot enough to disturb my sensory stuff and didn’t allow for the room to be chilled to calm me. The blankets were wrong. The room itself had that old school nursing home feel. And no, there wasn’t any internet to drown it all out, either.

Eventually the project staff had to last minute order a hotel room and drive me to it off campus after her normal bed time. She was fine doing so, and we never agreed to stay there again. I still day trip to the institutions for peer education, and I’m fine doing those so long as we are off the campus by dark. It’s similar with other institutional settings- nursing homes, mental health facilities, even transitional housing. When I was homeless, I spent one night in transitional housing and hit the point where I would have rather lived under a bridge. I ran away and a friend of mine (actually the same project staff) came and had me stay at her home. (The fact that the nursing staff there thought Passover observations were a sign of a latent eating disorder didn’t help.)

So when a horror movie lays bare the reality of institutions and being disabled in those environments, I both shiver at the treatment and thrill that the polite skirting that normally hides what could be my reality is lifted. My favorites, of course, are when the current or ghostly patients are the key to the protagonist’s escape- when trusting a “fellow” inmate is the way out of the man made hell.

And it is man made, even when the protagonist is encountering the supernatural. Frequently it is not the existence of the “mad” alone is not enough to fully fulfill this sort of story. It is the suffering they were inflicted with in the asylum. Similar to the typical haunted house story, where domestic violence and murder-suicide are the frequent suffering to create ghosts, the narrative of the haunted asylum allows us to reveal and name rightly the horror of abuse within societal structures. It becomes satisfying to the viewer, then, when the evil doctor is killed, or conquered, over the course of the narrative, just as the exorcism of the abuser-spirit delivers relief in the haunted house narrative.

I understand that this is not how most people, disability activists to utterly abled and NT, experience these narratives. I accept that, I don’t mean any of this to dispute those experiences or the legitimacy that the typical disability critique has. I even accept that we NEED those critiques, desperately, as the normative readings of these works does not match my own and can create harm unchecked. But I have had this experience of these texts- an experience that posits how we treat people with certain disabilities is the horror, not the PwD themselves- and it has troubled me for a long time that I haven’t heard many others that take this approach. Perhaps it is because of “Autistic Perspective Taking” reasons, especially in how long it took me to accept that the other view is more common, but I have to state the existence of my experience in this genre.

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. <3 [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.

#DearMe (For International Women’s Day 2015)

Today was International Women’s Day!  On Youtube, they’ve been doing a campaign for it called #DearMe. In this campaign, you make a video letter to your younger self. A lot of the big vloggers did it, and some encouraged others to do it. (You can also submit a gif.) About the time I discovered this, Thrive contacted me about doing something similar for their Letters to Thrive project.  That settled it for me- I was doing a #DearMe video.

I’ve embedded the video below, and the script I worked from below that. The video is captioned- if it’s not showing the captions, click through to watch on youtube. The text at the end of the video is from Laura Hershey’s You Get Proud By Practicing.

Dear Me, By which I mean young me,

A couple of things. Number 1: You are disabled. This is not a dirty word and isn’t shameful. In addition to being someone with mental health disabilities (which you’ve already owned, go you!) you are Autistic. I know at this point in your life, you still get very very upset any time staff bring it up. It is okay- this isn’t shameful either.

Also, your joints aren’t supposed to bend that way (It’s called hypermobility, and means you can get hurt easier) and the random pains you have will eventually get the name “fibro.” Neither are because of your weight or malingering, despite what Rick told you. By the time you hit my age, you will use a cane- which contrary to what you think, is super badass and femme- and a service dog, who makes your life a LOT easier to navigate.

Number 2: Don’t follow a boy to school. Trust me on this. Instead look for schools that might offer you a scholarship, and possibly ones that have a history of social justice or disability studies. Speaking of scholarships, keep applying for those- I know it feels like you’ve applied for tons but keep at it. You’ll need them.

Get accomodations from disability services. You need them, and they exist so that people like you can focus on actually learning. I know you are still going through your “I am crazy, but JUST FINE. This is FINE.” phase, but it isn’t and REALLY isn’t worth it.

History will become a hobby for you, and that is ok. (Also when you get a moment google “Anthropology.” You’re welcome.)

Number 3: You will eventually become someone who loves policy meetings. You know those things mom help you get invites to about mental health? That’s going to be more the direction that your career goes, not academia. And that is okay. You know that drive to see justice and equality? That passion will become the driving force in your work and in your life.

The internet will be really important as well. You already know this- you had it open things up for you already, and you now have things called, “friends.” It can do that and more for others, too. Don’t give up or get discouraged when people act like it is a waste of time. As you know now, it isn’t, and it will eventually make up about 80% of your work.

You will eventually find words for what was done to you, and it will make things better for others.

Number 4: Don’t let yourself make your sense of self worth be about your smarts or being perfect if you can. I know that Rick made it seem like if you messed up, even a tiny bit, that you would get locked away. That if it wasn’t for your smarts, that you would already be locked up. He was wrong, and you were right. You. Were. Right. You are worth it, you are valuable, and you are wonderful just by being you.

Shown on Screen:

Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Just practice,
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
By practicing.

You Get Proud By Practicing, by Laura Hershey

3/8/15, International Women’s Day

Parents

We are running up on the 2015 Disability Day of Mourning vigils (aka Day of Mourning 2015: Remembering People with Disabilities Murdered by Caregivers on March 1st) and it has me thinking about parents. Or more specifically, how parents react to the autistic and broader disability communities.

I kept asking people to consider hosting vigils, and too often there was push back that they were concerned that the parents in their community or the parents of their group members would fight it. Which I want to say puzzles me, but that isn’t quite right. I know what is happening here, it happens elsewhere too, but it still seems like nonsense.

First let us start off with this: Unless you’ve murdered or tried to murder your child, or actively fantasize about murdering your child, this isn’t about you. This event? Is not talking about all parents as some sort of blanket entity. It is acknowledging that while hopefully you, my reader, are not going to kill your kid or charge, there are people who do, and that that is wrong. I, and the disability community, want you to join us in saying “it is wrong to kill your kids. Period. Disability is no excuse, lack of services is no excuse. It is wrong.”

Saying that it isn’t okay to kill your kids isn’t about you, as a good parent. It isn’t, I promise! But it is important for you to join in on. You can’t tell, and we can’t tell, merely by looking that the parent next to you is also a good parent. The children who have survived can tell you that. The people who outlived a loved one who didn’t can too. So it is important to make sure that you are telling all parents, good and bad, this very simple thing- that disability status isn’t an excuse for murder. That murder is bad. It might feel too basic, but the cases we’ve heard of over the past several years show that when it comes to this issue it clearly isn’t. There’s still enough sympathy, enough rhetoric, that makes some people think it’s the better choice.

But the vigils for murder victims aren’t the only place I’m running into this issue. I do a lot of policy work. I have a deep love hate relationship with doing policy work, though part of the hate if I’m honest has to do with most of it currently requiring a minimum of a 5 hour drive each way. At some of these meetings parents come in and say some very reasonable things… but then are shocked when I add something that would put protections for their child from them. And every time, I have to tell them “I trust that you are a good parent. I trust that you have your child’s independence, safety, and access to community at heart. But not all parents are good. We have to make sure that their children are also protected.”

Some of them still will be upset. They really want, I think, to believe that if there was just the right services out there that all parents would think like them. I admit, that would be easier. But it’s not true. You can insert your token “and they say we don’t have theory of mind” joke here if you must. But there are parents who have done deeply horrific things to their disabled children, ending in their deaths.

But that’s just the more extreme horrors. I’ve also met people whose parents have told them, all the way up to age 40+, that they are not allowed to vote. In my state, that is not true- you can still vote in PA even if you are under guardianship. I’ve met people who have been told that if they move into a more independent situation, they will either be abused, or subject to more abuse. I know people who were abused before they went into a placement, and whose care givers hold that over their heads as something that will happen if they try again any time they ask for more independence. There are endless ways that a person can let their goodness fade away and reduce their loved one, to aim not for a better life but for one that is easier for the family or caregiver to manage.

And there’s contributing factors as to why these things happen. We have a lot of rhetoric that embraces the idea of people with disabilities being burdens. Sometimes there is explicit wording about our financial cost to our families, and sometimes it is more about all that time. When I was looking around for links on the Tutko case, I had to discard some of them because of how hard they framed things in that first week as being a case of the mother giving up family life to “care” for their kids. That was a deeply horrific case, one that later had that tone stripped as the neglect was extensive and the way that her rejection of help was tied to a history of child protective services was revealed. But it was still the default, and that is concerning. That is how deeply that burden rhetoric has permeated.

Again, I trust that you reading this are good people, good parents. Some might even say that’s too trusting, but I’m going to trust you anyhow. I’m going to trust that when you talk to your kids, you are letting them know it’s not okay for anyone to harm them or to kill them. That you fight for and with them, but listen to them in whatever way they communicate. That you let them know that they are loved, period, and that that love is about them, not about anything else.

And I’m going to ask you to not fight against us, to not be defensive, but instead to stand with us when we say, “no, it’s not okay.”

Guest Post: Morénike Onaiwu on Why the Autistic PoC Anthology is Important

Today I’ve invited Morénike Onaiwu to write about the importance of the Autism and Race Anthology that Autism Women’s Network is fundraising to put out with Lydia Brown (aka Autistic Hoya.) While I do find the anthology incredibly important myself and could sit here and type up a ton about representation, I feel that it is important to carry the principles that having an anthology about Autistic PoC be written by Autistic PoC exemplifies into how I help promote it. So aside from signal booting about it on my social media, I’m pleased to welcome Morénike to be the first guest post ever on this blog. 


 

A family shot of a woman with two young children sitting piled together on an indoor hammock.

Morénike and her two children.

 

Though I was obviously “born this way,” on paper, I’ve only been “officially” Autistic for under a year. What now seem to me like obvious signs of being on the spectrum were always explained away as “something else.” For adult Autistic women, such experiences are not uncommon. However, I strongly believe that it is not just my gender that contributed to my being “missed” for over three decades. I am certain it is at least partially due to my color as well. You see, I am a black woman – and growing up, autism simply didn’t “look” like me.

My name is Morénike, and I am a board member of the Autism Women’s Network (AWN) as well as an Autistic advocate and parent (of Autistic and non-Autistic children). I’m honored to appear as a guest blogger today to post about a topic that’s very important to me – and that I believe should be important to you. Though I am somewhat of a newbie to Autistic advocacy, my interest and commitment are sincere. But regardless of who I am, this issue is one that I hope you will be willing to lend your support to.

There is a quite a bit more understanding of autism in 2014 than there was in the ’80’s when I was a child. However, one thing that hasn’t changed much is that neither the public “face” not “voice” of autism is reflective of the diversity of Autistic people, whom do not all have the same skin tone as Temple Grandin or the child actor from “Parenthood.” Autistics of all hues are working to increase the solidarity of various groups within our community and to amplify the voices of those of us who are less represented, so things are gradually improving. But change takes time. In the large, multicultural city where I live, I can still easily pick my two Autistic children out in a crowd when we attend local autism events; clearly there’s still much more to be done.

Fortunately, an exciting Autism Women’s Network (AWN) project is underway that will highlight the voices of Autistic people of color. Edited by another AWN board member, Lydia Brown (a talented Autistic writer and blogger), the project – an Autism and Race Anthology – will fill a much-needed void and will help to make the discourse surrounding autism more inclusive of racialized individuals. I cannot emphasize enough how significant this project is. However, to make this anthology a reality, we need help!!! YOUR help. Here’s how you can make this anthology a reality:

  • Signal boost this project. Tweet about it! Post about it on your blogs, on tumblr, on Facebook, on other social media venues. We need to spread the word far and wide.
  • Donate. A little money can go a long way. AWN is committed to making the anthology accessible, so it will need to be created in various types of media formats. To do this, funds are required. Only about a third of the money that is needed has been raised. We really need more! Please donate, and also share widely to encourage those that you know to also help with a donation!
  • Submit! We heavily encourage any person of color who identifies as Autistic to contribute to the anthology. Submissions are being accepted from now through the month of November, and acceptable formats include poetry, narrative, and more.

Please visit the link below to get more detailed information about the anthology and how you can help. Thank you!

Donate via the Autism and Race IndieGoGo.

Check out the submission guidelines for the anthology and consider submitting.

Initial Thoughts on John Scalzi’s “Lock In” (Spoilers)

I just finished John Scalzi’s Lock In, and I have an array of thoughts. I’ve decided to post it here instead of my (poor, under used) book tumblr for two reasons: 1) it is a very disability centric work and 2) a lot of my reflections on it are not just disability centric, but also neurodiversity related. NOTE: There will be spoilers in this post. If you wish to avoid spoilers, skip the read more/reading past the warning.

I really enjoy Scalzi’s work generally. It’s far from perfect, of course, but generally speaking he tries pretty hard to do good. In the past he’s done things like announce that he will not make appearances at fan conventions that do not have a strong anti-harassment policy, signal boosted and backed up via giving them guest posts on his popular blog when friends have reported sexual harassment, and talks bluntly about discrimination. Sure, he has flaws both structural and personal, but he has grown greatly over the years.

His writing is also, in the general rather than disability sense, pretty accessible on a whole for his genre. I have Audio books of his Old Man’s War universe of books, and Old Man’s War in particular is one of those books that I’d rec to someone who isn’t super familiar with but willing to get into reading Science Fiction. (Trust me when I say that Science Fiction is a genre with a LOT of not terribly accessible writing.)

the Cover of John Scalzi's "Lock In" featuring plastic figurines of people. most are a pale white color. but a few are bright red. The author's name and title are in the center.

Cover Image via John Scalzi and TOR

The basic premise involves a bit of background, and summarizing it here is going to make it sound more complicated than it feels in the novel. In the universe of Lock In, a flu like epidemic strikes. At first it sees like any epidemic flu- high mortality rate, sure, but normal- until the second stage sets in: meningitis. And not just any meningitis- this one will put you in a coma and a certain percentage will wake up with their brain re-wired. Sometimes it’s minor, but for a decent chunk of the population they wake up to a form of Lock In Syndrome- their brains have changed so much that even though they are awake and conscious, they no longer have control of their bodies.  Other survivors of the second stage of the illness, those with less extensive brain changes, have the ability via technological enhancement to allow the consciousness of those who are locked in to “borrow” their bodies. They are called Integrators.

After FLOTUS  Haden contracts the locked in form, a ton of legislative dollars got dumped into a fund that would cover both care and treatment as well as quality of living research areas and the illness is named “Haden’s” after her last name. Neural nets are developed to  allow those locked in access to a digital world. At some point an engineer develops robots (Threeps) that can be “ridden” by those locked in, and they are once again able to access the outside world.

The book takes place 20 years later. While there’s some bigotry towards Hadens, there has been a lot of pretty darn effective accommodations via the epic assistive device of the Threeps. Thanks to that, Hadens can do just about any job anyone able bodied could do- and some that they cannot. Additionally, the digital world of the Agora has allowed for the development of a Haden’s culture of its own, complete with identity-first language usage, and some younger folks end up rarely using a Threep preferring the online world and jobs that they are able to do from there. (In this universe, I’d be able to continue my social media contracting work even if I were a Haden.)  Unfortunately, this also means that there are fiscal conservatives who want to cut nearly all money for Haden’s research, support, and development- and they do nearly just that. As the book starts there is about a week until the defunding legislation (The Abrams-Kettering Act) goes into effect.

Into this setting we follow Chris Shane, a new FBI agent- who happens to also be a PoC Haden- as his first week on the job kicks off with what looks like a murder. His new partner, Leslie Vann, is a former integrator and together they work in a special department that handles cases involving Hadens and Integrators. (For procedural purposes, any crime involving a Hadens or an on duty Integrator are considered inter-state, since the body of a Hadens could be anywhere while the Threep comits/is involved in crime. Ditto for an on duty Integrator.) The murder ends up becoming something much more, and we are treated to a pretty good tale that is something between corporate and procedural thriller. In the end I really really enjoyed it, but for me personally I had a hard time with some aspects up until the final few chapters. However, I will say that I already want to read it again just in the time that it’s taking me to write this post. I hope that Scalzi writes more in this universe, if only a short story set immediately afterwards- I want to know what was being said in those speeches!

You can read the first five chapters of Lock In on TOR’s Website. You can read a long short story that goes into details about the background in an interview narrative style on TOR’s website. It is called “Unlocked” and stylistically reminded me of the book World War Z. You can of course purchase it on Amazon, but please consider purchasing from a local book dealer or independent retailer- see details at the very end of the post. 

From here out there are spoilers, read at your own risk. Continue reading