“Who Wants to Get Arrested?!?”

I’ve seen Bruce Darling open presentations about direct action with the words “Who wants to get arrested?!?” many times. A number of those times, I watched the horrified but fascinated reactions of a group of autistic college students with an interest in organizing. I thought, watching this, that while my heart said “yes, let’s do this, I can do this” that I wouldn’t be in much of a place to actually get arrested at a protest and perform civil disobedience in my life. I felt that while I was working for ASAN it was ill-advised, and didn’t anticipate leaving at the time.

I was wrong on multiple accounts.

Heavy pale femme, slightly sunburnt, Holds up a citation for "incommodating/obstructing a public area" with personal information scribbled out.

I’d rather get arrested than die without Medicaid- so I was. [Heavy pale femme, slightly sunburnt, Holds up a citation for “incommodating/obstructing a public area” with personal information scribbled out. ]

On July 25th, 2017, I had a free afternoon after a march and rally for disability rights and to save Medicaid in Washington, DC. I had rolled up to Stephanie Woodward in my rental scooter, hanging out as the crowd dispersed. She started gathering people together, and we rolled from the lawn out front of the capitol building towards the Hart Senate office building.

“Hey wanna come to a party?” she asked people as we rolled past people heading to hill visits or biding time until their visits. Everyone who knew Stephanie chuckled and either followed or said no thank you. Everyone knew that when Stephanie says “party” she means at minimum a protest, but more likely some civil disobedience and time in police custody.

At the Hart building atrium, after sending my sister (acting as my PCA) on break, a crowd slowly assembled. Experienced members of ADAPT went around the crowd, explaining what was going to happen and some basic rules.

  1. When Bruce gave the signal, the crowd would start chanting.
  2. The police will eventually show up with a megaphone and issue three warnings.
  3. If you don’t want to get arrested, before or during the second warning you should get out and be quiet- either go to the sides of the room and watch silently, or go up to the many balconies around it and silently observe. (Or cheer, but I’ll get to that.)
  4. If you want to get arrested, have your photo ID easily accessible. When the cops come to you, hand it over. When they wave you to follow them into custody, go peacefully- this particular action called for no resisting arrest charges.

I managed to roll up to the center of the knot of ring leaders right in time to get started. There were many awesome people there- including Becky Ogle, Colleen Flanagan, Cheryl Gottlieb, April Murdock, Amber Smock, German Parodi, and many more- including Judy Heumann, who has been an activist and advocate for a lot time and is an important figure in disability rights, and Spitfire, who is another honored elder in the community for whom this was, I believe, arrest number 84. (You can see a few photos that Amber took on facebook of this protest if you start here. National ADAPT also posted pictures of the protest on Facebook.)

So we chanted. As time went on, staffers from the Senate offices came out to watch from their windows and the atrium balconies. There was a good 200 or more people at this point, all chanting to save Medicaid.

Eventually the cops showed up and issued a warning. You could barely hear the megaphone where I was over the chanting, but those who were experienced made sure to pass the message along. People at this point began to trickle away, and I think this was around when we got the banner out. (I’m not sure though- some things blur together, and adrenaline was escalating. But the exact timing of when the banner went up was unimportant- what was important was that it went up at all.)

My fist was pumping in the air when the second warning went out. I was looking around, chanting with all of these other people deciding if they were going to get arrested today. At this point the crowd was thinning out, and when I looked my best friend, who had been standing next to my scooter, had cleared out. It made sense- he tends to work things from an establishment angle. We need all of these angles dealt with to be effective as a movement.

At this point I needed to make a choice: was I willing to be arrested for my rights as a disabled person?

And at that moment, full of adrenaline and fist pumping in the air, I realized I was. I had never had a protest related arrest before, and was a little worried. Many what ifs came to mind, despite being reassured earlier that they would likely pull as aside and give us citations before letting us go.

Stephanie had moved closer to the center and elevated her chair at some point. Beneath the banner, she was tweeting and getting updates. This whole time the Senate had been voting on the motion to proceed. This vote basically says that the Senate is willing to continue on to the voting process, with amendments being thrown into the ring and voting happening fast and furious. Around the time of the third warning, I want to say, we got word that the motion to proceed had succeeded. Stephanie yelled, “The Senate has voted to kill us!” And for a decent chunk of us if the plan had passed, it could have.

For those of us still in the circle, emotions were high. A woman across from me stopped and silently cried, while all around her people screamed, some crying, some sobbing, “I’d rather go to jail than die without Medicaid!” I closed my eyes and threw my head back as I screamed along, my voice breaking and cracking. I noticed in the periphery the cops surrounding us, and a police line going up. Slowly people on the edges were getting tapped on the shoulder by the cops, turning over their IDs, and being let away into custody.

Being in the middle of the circle, it was a while before they tapped me. I had already pulled out my ID and kept chanting until they came back to lead me into custody. First they lead us in batches of 10 into a hall area. As they escorted us one by one into our batch, spectators cheered us. From the balconies people celebrated each of us being willing to go into custody for our beliefs.

(In this video, you can hear Sam Crane’s commentary, chanting, and cheering as people are wheeled out. You can see me being taken into custody around 10:45-11:25)

In that short hall it was cooler somehow. Maybe it was that we were out of the pool of light cast by the skylights, or just a smaller number of bodies crowded together. A person arrested next to me also said this was their first protest arrest. (If this was you feel free to comment with a name and your pronouns!) For Stephanie, her arrest count was in the mid teens. As each group of 10 was collected, we were taken into the entrance way.

The entrance had been closed to the public and sectioned off. On one end was a table of cops with boxes of paperwork. On the other the holding area was roped off. By the time all 50 or so of us were all in holding, including many folks’ wheelchairs and mobility devices, it was densely packed. But it was also chillingly quiet compared to the atrium. While later more conversation would happen, as we waited for processing to start people had quiet murmurs with their neighbors. Near me, German quietly cried. “They voted to kill us. They voted to let us die.” I could hear the blood pounding in my own ears as I waited.

Sam Crane stood outside the building peering in while we were in custody to take this video. The glass was pretty sound resistant so there was a bit of pantomiming going on. (My tank top, by the way, says “Noncompliance is a Social Skill” and is from Real Social Skills, though she only offers them periodically. I got a TON of compliments on this tank top, by the way.)

They started processing us out in groups of 10 eventually. While it was roughly in order of arrest, it wasn’t precisely. Some groups got processed out of order, but they did try to keep it close to the order of arrest. I was so close to the center, so my group was closer to the end. Because we were technically under arrest, we weren’t permitted to use our phones. Some did sneak their phone use, hiding behind each other’s wheelchairs in the packed make-shift holding area. I didn’t risk it.

Eventually I requested to use the restroom and a woman cop escorted me to the lady’s room. Once my scooter and I were in the accessible stall, while I was utilizing the facilities, I covertly texted my sister.

a screen shot of a text between Savannah, aka "Nico", and their sister Christy.  Nico: Stay away until 3:30 at least okay? Nico: love you.  Christy: ok Christy: what do you want to drink? Christy Hey?? Christy: I'm going back to the hotel.  Nico: arrested meet me back at the hart building shortly.  Christy: Wtf Nico. I just got back to the hotel!! You're going to have to wait a little bit.  Nico: hey I'm out of Hart!

So my family handled this well… Image: A screen shot of a text between Savannah, aka “Nico”, and their sister Christy.  Nico: Stay away until 3:30 at least okay? Nico: love you.  Christy: ok Christy: what do you want to drink? Christy Hey?? Christy: I’m going back to the hotel.  Nico: arrested meet me back at the hart building shortly.  Christy: Wtf Nico. I just got back to the hotel!! You’re going to have to wait a little bit.  Nico: hey I’m out of Hart!

 

I only had enough time to text “arrested meet me back at the hart building shortly.” I couldn’t wait for a response- I sent it, put my phone away and rolled out to wash my hands.

On the way back to holding at about, Tammy Duckworth was coming to check on us. I rolled into holding right before she gave us all a rousing speech of encouragement and support. (Also as someone who was literal feet from her, her shoes were FABULOUS. Great sense of style.)

 

 

(This second video was re-shared by Kerith Strano Taylor, who has run multiple times as a Democrat against my Representative, Glenn Thompson. I was STOKED.)

Eventually they called my group up for processing. The cop had a little paper with a carbon copy set up on it. He verified my address and name, got my height/weight/etc, handed me the yellow sheet and my ID, and sent me to wait for a speech before release.

These were the Capitol Police. They had been trained extensively on dealing with protesters, and they were very used to arresting and detaining protestors. Several of them knew the ADAPT regulars by name, and asked after those who weren’t at this action. (Some ADAPT people had to deal with other life things; another group went to the Senate balcony.) A few of the cops thanked us- both for speaking up generally, and for this particular issue. Some had disabled relatives at home whose lives they were worried about too.

Finally my group got the speech. You have 15 days to pay your fine, you can pay it starting tomorrow, if you don’t pay then you’ll need to go to court, where you can contest the charges. (ADAPT organizers advised us newbies to just pay the fine.) then they released us outside.

After my release I went to another rally and then rolled to the hotel. At one point I encountered unexpected stairs on a path (thanks for nothing google maps) and off roaded the scooter down a steep little hill. (Bruce was going by, and THAT got me a bad ass designation from him.) Because I had gone straight to another rally I missed out on a group post-arrest photo with Judy Heumann and Gregg Beratan. Instead a stranger took my picture at the rally because they thought it would look awesome.

Heavy Pale Femme in a scooter holds up a "Don't Take Away Our Healthcare" sign next to a group of people gathered for a rally. In the background is the Capitol steps and dome.

“Hey can I take a picture of you holding that sign for you? It would look AWESOME.” “Okay.”

Being me, I called my mother. It went something like this.

Mother: You got arrested?!?

Me: yeah it was just a citation and fine though.

Mother: … how much is the fine?

Me: oh, it’s only $50 I’ll pay it before I leave.

Mother: Oh well that’s not bad. It is for a good cause. [Short conversation about my sister.] Okay have fun and don’t get into TOO much trouble okay?

I thought that went pretty well. By the time I met up with my sister back at the hotel Christy had calmed down enough to be proud of me. Later in the evening, a friend of mine who is abled contacted me- she and her daughter can’t get arrested because of work stuff, but they wanted to anonymously cover my fines. They also covered some other people’s fines once I connected them to Stephanie.

They next day we went on a poorly fated adventure to take the ADAPTers who had camped outside of the Russel office building an ADA anniversary cake. They had broken camp an hour before we got there, so after stumbling into the Planned Parenthood rally, we went to pay my fines.

A heavy pale femme wearing pearls has on a pink "I Stand With Planned Parenthood" t-shirt on. This is a selfie.

PatientMiles from twitter gave me a Planned Parenthood rally shirt since by the time I asked about them, they had handed the last one to my sister. Thanks Miles! Thrilled to have met you! (My sister got even more swag because she raided the swag-distributors. Sigh.)

I hobbled over there just barely in time to get in before the office closed. A friendly young guy did a security screening and chatted. He informed me that the people who had gone to protest in the Senate balcony got more than a fine. Turns out interrupting the Senate is a Big Deal, and those who didn’t know were a bit shocked to learn that that isn’t a charge you can just pay a fine for. Those folks had to go back for a court date.

A surly cop then escorted me over to where they would process my fine. After he left even the other cops joked that he tends to be in a crappy mood, which helped my nerves. Several other ADAPTers were there paying their fines as well. It was actually fairly relaxed considering the setting- everyone was in an okay mood. When it came my turn, they finger printed my thumb, took my money, photocopied the paperwork and my ID, and gave me a receipt. Then I was free to go about my evening.

Oh and the cake? Yeah, we tracked down some ADAPTers to deliver that to eventually, too.

Four light skinned people. They are standing. One is holding out a cake that says, Happy Birthday ADA with the ADAPT logo, and candles spelling out 27. It's in the lobby of an apartment building somewhere in DC.

At the end of the day, we delivered the cake! By we, I mean Kelly Israel, Christy, me, and Rabbi Ruti. I hope Jill and Laura enjoyed the cake!

Over all, my first protest related arrest went well. I was surprised, as I’m terrified of cops. I think it went well because:

  1. I was with experienced activists with lots of civil disobedience background.
  2. The group was large enough they were doing catch-and-release instead of taking people to the station.
  3. It was the Capitol police, who are experienced with this kind of arrest.
  4. We knew the charges and fines ahead of time and were able to make an informed decision.
  5. It was a very public set up somewhere where people could easily observe.
  6. We didn’t resist arrest.

I can factor in my white-ish-ness and gender presentation as well as a consideration. I didn’t see any of the people who differed from me on those respects gone after differently at this particular action, but it’s something to be aware of. I will say that if you are making a risk assessment for if you want to try this tactic, please do factor in your gender presentation and if your appearance is racialized, as well as any disabilities, before making your decision. These are things that can and do impact how police will treat you.

I want to emphasize that these circumstances were different in part because of where we were. That same week, ADAPTers in Ohio were injured by police at protests, and despite non-disabled activists in Colorado having their charges dropped, the ADAPTers who occupied offices there have not. I would never do this in some places precisely because of the history that some of the police departments have for assaulting protesters.

If you want to know your rights at a protest, the ACLU has a guide about your rights as a protester. And here’s a guide on your rights if arrested.

If you’d like to support the work of ADAPT you have a few options. You can contribute to the National ADAPT expenses, including paying fines, here. The folks who camped outside of the Russel building still need their expenses covered as well- contribute to July’s Camp ADAPT here. Stephanie and Bruce are both from ADAPT Rochester, and you can support them via this donation page– if you donate a certain amount you get a shirt! (The page is run through their local CIL, but will help cover Rochester ADAPTer’s expenses for actions this summer.) Or if you are a history fan and want to make sure the story of ADAPT gets out there, you can support the documentary about ADAPT’s history and work, Piss on Pity.

In memory of Molly, faithful cuddler and excellent service dog

Today I’m saying goodbye to my service dog, Molly. Molly is 12 or 13 years old, and had retired earlier this year because her hip problems had accelerated. She’s had a good life full of adventure and opportunities many dogs don’t get to have. 

Molly first came into our family as a rescue. She had been running loose emaciated but friendly along a highway in North Carolina, where my brother picked her up. He was pretty sure he knew where she was from, and that they were just waiting for her to get hit. So he scooped her up and brought her home to Pennsylvania and started training her. 

My brother trained her for several years on the basics- how to be obedient, how to behave around other animals, how to know the difference between an idle comment and actual need. He taught her that running into traffic was bad, but remembering who is safe or not is good.  And since he was young and his place was the party house, how to recognize humans who were out of it, and how to make sure they were safe. To read humans when they couldn’t take care of themselves. 

After that and more, she was staying with my parents. I was homeless off and on, sometimes couch surfing sometimes not, spent a little time in an unofficial life sharing set up, and couldn’t take her at that point. Since we hadn’t gotten to train her in my disability specific tasks yet, she couldn’t come with me to the hotels I was at for work, or the emergency housing I spent one night at in a nursing home setting. (I’ll write more on that somewhere soon.)  During this time, Molly met the bear. 

We don’t know exactly what happened but based on her personality and the vet’s deductions we think that this is what happened: Molly was adventuring in the woods before she would need to go to a dog sitter for the family vacation. She saw some dark creatures about her size playing and went up to them to say hi, being a friendly dog. Unfortunately these were bear cubs, and mama bear did not like this dog playing with her cubs. She scooped Molly’s hindquarters into her jaws, taking a big bite into her. But when momma bear loosed her jaws to take a better bite, Molly got herself out and away and headed towards home, injured but alive. 

My mother had been packing the car and was getting ready to find the dogs to take them to the dogsitters. But she couldn’t find Molly. She went around the garden calling for her, but didn’t find her. And then, she noticed some ferns shaking. She called again. The ferns shook more, but Molly didn’t emerge. After this happened a couple of times, my mother waded into the ferns and found her. Molly was laying there with something dangling out of her belly. My mother scooped her up and raced her to the vet, thinking that this was a fatal injury and that her intestines were dangling out. 

The vet said she was lucky she was overweight for her body. The dangling matter was just fat, and that fat had saved her life. I hadn’t been around- I’d managed to get a conference to cover me and I was out of town. My mother was relieved she didn’t have to explain that this dog was dead to me, and counted her blessings. Molly was frankindoggie for a while, with the drainage straws and stitches, but she recovered and was left with a little arthritis and a lot of scar tissues. If you’ve met Molly in a setting where she was allowed to get pets, you may have felt them. I may even have encouraged you to feel them as messaging the scar tissue and petting it seemed to make her feel better and reduce the inflammation. 

After she was healed as she could get and I was finally housed she began her disability specific training, admittedly later in life than most service dogs. All the same she took to it instantly. She understood that if I was disoriented in the store and we were with my mom, she had to take me to her. That if we were alone she had to find a quiet spot out of the way and get me to sit down. If we were in the community near home, to take me home. She could tell before I could that I needed to pee, or that I needed to drink water or hadn’t eaten recently. She knew how to read what I needed and do whatever was within her power to do it. 

One time I had been avoiding drinking water to deal with something else and she slowly escalated until she growled at me, startling Julia Bascom and prompting me to get water. She also would know once I made up my mind to follow through with something and quietly nudge and encourage me to follow through. Going new places was easier with her both because I didn’t have to self monitor for things like seizure-like activity or bathroom time, but also because she would bring me courage and even tug me just enough to follow through if I froze. 

Molly loved being on the train. We used to ride Amtrak every couple of months for various things down in the south east Pennsylvania region, and she was so happy about it. She would act as though she was saying “mom mom hurry up! Get on the train! We love the train!” when the train would pull up to the platform. She also flew, though she liked that considerably less. She loved meeting new people in new places even if she didn’t get free time to cuddle or say hi. She just loved people. 

Earlier this spring, Molly retired. Her hips were dislocating too often for it to be fair to her to keep her working. She had a wonderful time being retired and spending time with my parents when I wasn’t home, but by the end of May, she could no longer hike down the mountain and back with my mom. In the past several weeks she hasn’t been able to walk beyond the yard without needing carried. In the past week or two, we’ve needed to carry her back up the garden. Last week she fell into a ditch and she hadn’t been the same since. She lost bladder and bowel control in the past few days, and a couple days ago her breathing had become heavy, short, and sounding wet in her chest. She’d been in pain. All of this is a long term complication from what the bear did, combined with the natural effects of aging. 

Today, I lay in the yard with her, cuddling her for the last time. We gave her some neurotin to help with her pain, and gave her lots of love. The cats even cuddled with us. I was in the yard with her when I started this post. She’s now gone, buried just inside the wood line at the bottom of the garden, in sight of where my hammock is. My mother and I had left to give the other dogs ice cream so that they wouldn’t have to be here when my stepfather put her to sleep and then into the ground. And, I imagine, so I wouldn’t have to be here. 

Molly made the world better for me, both in general and as a disabled person. She helped make it more navigable. She allowed me to participate in the world at times I wouldn’t have been safe to if I hadn’t had her with me- pain days, dissociated days, panicked days, all could be spent in the community instead of in bed knowing she would get me to safety if I were to over do it or become overwhelmed. I’ll miss her infinitely. 

In her memory, I’m asking people to donate to an indiegogo for a documentary about ADAPT’s history and work, Piss on Pity. ADAPT has worked since before I was born to bring visibility for and pressure on decision makers for disability rights. Their work has directly impacted my ability to navigate in this world. It is my hope that people who see this film will be inspired to not only support disability rights in whatever method is open to them, but to also work towards justice in general and for their individual causes. Not, of course, out of pity but because people giving a movement their all can be empowering and motivating. From there I feel that your support would be continuing Molly’s work out into our society. 

Thank you everyone for your support. If you’ve met Molly, feel free to share. If you just want to share in my grief, that is good too. And again if you want to support Piss on Pity in her name, the link is here. Thanks. 

How we survive- Or don’t

[Trigger warnings mainly for suicidality, but also for abuse, neglect, medical abuse, police brutality, ableist violence and plain old ableism]

Here’s the reason I’m still here: Because at the times of my life, my childhood, my teens, my adulthood, where I’ve wanted to die I’ve had people I knew would be upset I was gone.

I’m doing really well with my mental health over all lately- I have had a few bumpy days here or there, but I’m overall a happy person now. Even when I’m having the bumpy days, I’ve become someone with a happiness underneath inside me to keep me moving and using positive coping strategies. Even on days when I have panic attacks. Even on days where I’m having flashbacks, though it’s buried pretty deeply on those days. Even on days where I feel a general hopeless miasma. It feels surreal, if I’m entirely honest.

It feels surreal because for the vast majority of my life  to this point I’ve lived my life with the undercurrent being a constant feeling of worthlessness. I make no secret that I have been hospitalized for suicidality a decent number of times, though mostly in my teens and childhood. I’ve been coercively hospitalized most of those times that I’ve been hospitalized after the age of consent to treatment, told that if I didn’t “voluntarily” go that they would issue the legal documents to involuntarily put me there.  The others were because of a fear that they would reach that point if I didn’t.

Here’s how I survived, and it had nothing to do with hospitalizations. (For me their major benefit was as a reset for environmental triggers, not treatment.) I had a few people who I knew would be devastated either emotionally or, when I was at my worst times, financially by my death.  I don’t mean the sort of things that a long spoken piece I heard last night at a suicide prevention fair was meant to force you into guilt out of. I mean a more organic level of guilt, not one imposed by others, and a pathological but useful level of anxiety over how I impact others.

I worried that my best friend would struggle emotionally if I died. (He has saved my life multiple times both this way and by being present for me.) I worried that people would judge my mother. I worried I would be even more resented. Later, as it became worse and a lot of this became harder to care about, I became fixated on the financial burden my death would cause my family. The Average American cost of funeary expenses is $8-10k, and can vary also depending on what your state requires (there’s some real… lobbyist dictated laws on deathcare) and your personal and religious needs. Knowing how much it would cost my family both made me feel worse about myself and also kept me from following through on my ideations.

There were a few times where I had a more passive suicidality, where I was too depressed to do anything to take care of myself without detailed step by step prompting. In those cases I wasn’t dependent on these, but because it would have been suicide by neglect all it took was heavy prompting to get some assistance, to read, to do the coping strategies even though I didn’t feel they were working. These were effort intensive for my loved ones. So was my mother fighting off medication induced psychosis, suicidality, and health issues when I was in middle school. So was my mother  fighting the school to keep me, a crazy person with a DD, not only in school but in access of academic content suited to what I needed not just what their lowered expectations were. So was my mother fighting against the repeated recommendations to put me away in a juvenile psychiatric institution. And ALL of it was worth it- and would have been even if my MH status had never changed.


I never thought I’d live past 20/ where I come from some get half as many

— Hamilton in My Shot, from the musical Hamilton by Lin-Manuel Miranda

I really didn’t. Past 20, then past 25. And yet I will turn 29 this summer, and 30 is fast approaching.

Where I come from, though, wasn’t a place or time where people were dying of childhood diseases and fevers on a regular basis, wasn’t a hurricane plagued region, and wasn’t in the situation of being an orphan.

Instead I came from group therapies, wards, and treatment settings. There are people I was in these settings with whose brain got them, either because of what they were already fighting or because of medication induced symptoms. Some got off with even harsher health side effects to abusive over medication practices by our providers than I did. (I’m not anti-med, I’m anti-uncritically assuming they are right for every case and the assumption that you are safe to simply accept what is dictated by a P-doc without question, which is how the system is actually built.) Some in these settings ended up getting restrained to death, or secluded until they stopped finding a reason to continue. Some ended up having attachment therapy techniques rec’d to their parents- techniques, like aggressive holding therapy, extensive isolation periods, and extensive food based reward-punishment systems that were unsuited and left them malnourished as punishment for being disabled. Smothered, starved, neglected.

Some had those causes of death, but at the hands of parents. Some accidental, some on purpose. Some were buying into the mercy killing narrative that permeates our society. Some were trying to administer restraints or a holding regimen and were told that their child yelling “I can’t breathe!” was a punishable behavior or symptom to be ignored by the people who trained them. Speaking of people who couldn’t breathe, some were killed by cops who saw their crazy and far too often their race (or just their race and later used their crazy as an excuse for their paperwork) and restrained them to death, or neglected needed medical care, or just outright shot them. Their killers in either case either got off or got off light in too many cases.

And some just fell so far out the cracks of a system that ignores the need for high LoC Community based services for people who are “just crazy,” or didn’t “have time” to follow through foster systems well enough.

And every single one of their deaths were tragedies. None of them were blessings, and to say they were shows an appalling lack of belief in our humanities. Many of us were difficult to support and took a lot of effort to support, and we are worth more than having our deaths summed up as a “relief.” We are and were all whole real people- whole real people with heavy struggles and deep pain, whole real people called broken to our faces, but we were and are Whole Real People.

None of our deaths were blessings.

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. ❤ [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