“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.

Public Comments on PA’s Transition Plan for CMS’s Final Rule on HCBS

The Centers for Medicare & Medicaid Services released some new rules on what constitutes Home and Community Based Services/Supports (HCBS) early this year. I was personally quite pleased about the progress the rules represented. You can get a decent overview via slides on the HCBS Final Rule on CMS’s website. They have a page on Medicaid and HCBS where you can get additional information about the rules and so forth, including the text of the rules themselves.

Each state has to develop a transition plan that shows how they are going to approach making their state’s service system fall in line with these rules. Right now Pennsylvania’s is in a comment period. There are likely better people to go into the details about PA’s transition plan– my basic feel for them was that it could definitely have been more extensive, and I was disappointed that the person centered aspects were pushed to a different transition plan for sometime in the future.

As part of the process for the transition plan involves public comment. The final public hearing session, in Harrisburg, is the afternoon of the publish date on this post. However, you can still submit comments until September 16th, 2014 via mail or email. (Details on how to submit a comment on this issue.)

To speak at the public hearings, you had to register that you wanted to submit comments. I registered and attended the Pittsburgh session. At the beginning, the staff running it went over the bare basics of what the rules were and said that they had moved the person centered aspects to a different plan because CMS had some stricter processes for that aspect of the rule. Which meant that the big points that I was interested in emphasizing, and many of the others were interested in addressing, were less on topic than we expected, because that point was not clear in the registration for the hearings. Each person was assigned 5 minutes to speak, and there was live transcription. Speakers were expected to also mail or email their comments.

against a wall, two things are projected: one a power point with a count down on it and the other live transcription.

Live transcription at the public hearing…

I had decided to basically remind everyone about the Keeping the Promise paper (link below)  and the fact that it heavily influenced CMS’s final rule, but to focus on an experience from the interview process that I felt would highlight some of the difficulties that need addressed in order to make sure this actually changes people’s lives and experience of community. You can read my comments below, with a couple of edits in square brackets to make it make more sense here. And don’t forget to submit comments of your own!


Hello, my name is Savannah Logsdon-Breakstone, and I’m an Autistic adult from Venango County. I wanted to remind you all about a paper called Keeping the Promise which informed the rules on HCBS that CMS released. This paper was based on interviews with a wide range of self advocates from around the country, including some from Pennsylvania, conducted by a team of primarily self advocates with the help of some allies.

I was a part of creating that paper as someone who conducted interviews and gave some input and I have to say when the rules came out I was pleasantly surprised- some of the recommendations we gave were not only followed, but some of the language lifted word by word. This was important, as the recommendations from that paper were ones that came from both the lived experiences and the dreams of self advocates thinking about what community living should look like for themselves.

My experience interviewing self advocates for this paper also highlighted something even beyond the paper itself for me though that I believe could contribute to addressing our state’s writing of and effective implementation of the new regulations. Specifically I want to give you a concrete example.

While I was interviewing people, I met an older woman with ID and some mobility issues. By most standards she was well supported, and her staff engaged about her access to community both on local and national levels. We had been given a fairly basic set of questions asking what community was and wasn’t and what those we were interviewing wanted in their lives, all in plain language. I sat down with this woman and her staff and was writing down her responses as she was unable to write them down herself, and she gave pretty straight forward responses, usually not terribly long and sometimes her staff would ask her to elaborate on something she said.

I don’t remember what question specifically it was, but at one point she said to me and to her staff that she wanted to live in an apartment with maybe one friend. The staff exclaimed that this was the first time she’d heard this, and when asked if she had been thinking about this for a long time, the woman said yes. She had been in the same group home, which was a little on the large side, for 20 years. For a decent chunk of that time, she wanted something else for her life, but no one had been asking the right questions of her in a way that was accessible to her and given her time to think and answer and be listened to.

Being there when she was able to express her wishes was an honor, but it had me thinking. This was a woman who by all outward observations was well supported to engage in self advocacy. And yet she had not been having her own planning team ask her in a way she could respond to and understand what she wanted in her life. And it was all very simple basics- nothing elaborate or super detailed or hard to do.

This experience illustrated to me and I hope illustrates to you that having a truly person centered, community based plan is about more than a check list and outside observations. It is about making sure our supports coordinators, our support staff, and our entire teams are truly coming in with the intent to make the person the one making the big decisions about what their life should look like, and following through by making sure their questions are asked accessibly and understood and a that the responses the person makes are truly listened to in whatever form they come. It might take extra time, but it is important.

I have printed out a copy of the Keeping the Promise paper for [the staff administering the   and have emailed both my comments and the paper to the email provided for the purpose [the day of the hearing]. If anyone else wants to read the paper it can be found [on the Administration for community Living’s website as a PDF: Keeping the Promise].

Thank you.

I’m not a side story

… But going by the stories out there, you’d never know it.

A few months ago, I had a dream. There was buddies and lovers and hijinx and fabulous clothes and lots of fun. Sounds like a pretty cool dream, right? Except when I woke up, I realized it was a nightmare.  For having seen all these fabulous things happening in my dream, when I woke up I came to the realization that it was not my narrative arc that the dream was following. I was a side character in it- a part so small I barely had a name in it, a character so minor that even in a romance novel series that pairs a couple up per book, my character wouldn’t have a book. I was the character who existed only in order to give reactions to the actions of the character the narrative followed, more object than person, more context than character. When I woke up, I sobbed silently into my pillow for more than an hour in the pre-dawn morning.

The framework this nightmare was built on didn’t blossom up from my mind alone. It grew out of a lifetime of the media we, as a society, consume seeding itself there. Very rarely are stories- particularly love stories- the stories of disabled folks living their lives. Too often when they are, they become pity fests, or the disabled love interest exists primarily to teach the non-disabled love interest a lesson about life. (And primarily these are still white, hetrosexual relationships.)

Living without seeing your reflection in media is hard. Trying to picture what it would be like to marry, or parent, when there’s so little media to help us think about those things realistically is hard. It’s soul crushing. And it permeates past your conscious efforts, right into what’s inside of you. Eventually, hopes that look pretty normal seem like fantasy. You stop being able to picture yourself doing the things that you hoped for, which makes working towards them that much harder.

And it’s not like it’s easy to begin with. Beyond just the difficulty of life in general, when you are a person with a disability there are additional factors.

There’s a moment in your life when you are disabled- or trans, or queer, or a PoC or…- when you realize that in most of the media you consume the people who do actually seem like you aren’t there to be fully realized characters. You are the comic relief, or an instrument of change. You are the reason that the “real” characters learn to grow up, or take their first stand against an enemy. You aren’t the protagonist yourself.

When the story is over, the characters like you go unremarked or are carefully wrapped up and put back where they “belong.” This goes for Rain Man as much as for the recent Bones episode “Heiress on the Hill”- while they deal with different disabilities and were made more than two decades apart, both end with the surprise brother going back to the “nice” private institution where it is said that they “belong.” That Bones decided to do this, more than two decades and the Olmsted decision since Rain Man, broke my heart. I stuck with the show, but now… I’m too disgusted to go back. There are less restrictive settings for people with that level of MH support needs. I would know- I’ve helped write policy about them. And even if there weren’t, we could have seen Bones and Booth put money towards FUNDING the development of less restrictive settings instead of how it went down. I feel betrayed. I started watching the show because there weren’t many women like Bones on TV, women with a lot of autistic traits who uses her special interest to understand the world, and now… I can’t.

I’m not the only person who has talked about this, about finding characters who are like you, who move like you, who live like you. Who have talked about the first time they met themselves in literature or film. It can be empowering, and it can also be harrowing- empowering because representation matters, harrowing because too often it’s sterotypes, because when we grow up and look back we realize our relief clouded things, because it’s so hard to find.

*When I read Rainbow Rowell’s Fangirl, there was one thing that really suck with me about it, and that was the protagonist’s father. Too often, parents with mental health disabilities are displayed as incompetent at best, often pitiable and where not as villain. But here I felt like he was considered a good father by the protagonist- a man who might make some mistakes, yes, and one whose MHD impacts his life a lot, yes. But in the end he is a good father, and a good man. This was very powerful to me- when I was younger, I figured perhaps it would be best if I didn’t have children. I’d only seen bad things happen in the stories I saw or read about parents with MHDs, and assumed that it would be horrible for my kids. That the pattern I had at that time of going to the hospital every 2 years for a stay would stretch out forever, that my kids would end up bouncing in between me and my mother forever. I thought I should plan hard enough to not want kids, and tried to squash down any desire to.

*And then my niece was born, and I realized that I really do want to be a parent some day. Because of physical health issues there’s a chance I’ll need extra help to become a parent, but it is something I want. And it’s funny- I haven’t been in the hospital for MH stuff since before then, and she’s 5, and will be 6 in the fall. Along the way I had begun uprooting the ableism that was embedded in me, and continue to do so. So finally seeing a positive yet realistic depiction of someone with an MHD (aka Serious Mental Illness or SMI) being a loved parent- even if he’s one that needs help sometimes- was very affirmative for me.

*There’s still that his story was a side story, yes, and it wasn’t exactly a life full of romantic relationships for him. Which is why I want to talk about The Fault in Our Stars super quickly. (I know some people hate the author, but I don’t so I ask that you keep author critiques on your own pages thanks!) It’s a book that treats people whose lives are often seen as tragic and cut too short as being full people. That their lives are or are likely to be short doesn’t make their lives less meaningful or valuable or worth living. It doesn’t prevent them from having complex thoughts and feelings about their lives. And it doesn’t prevent them from falling in love and *gasp* having romantic relationships that include being sexual. That was really powerful for me, as it was for a lot of other people.

Atop a pile of boxed up books is a red sign with blue-ish text reading, "We need diverse books because without them, I have trouble being the protagonist of my own dreams." With sheep turning into "Zs" around it are a cane, a Fluttershy plushie, and a Dora doll

This week, there’s an effort called #WeNeedDiverseBooks going on. May 1st, they are putting out submitted pictures (mine is above) talking about why it’s important that marginalized people are represented in literature, especially in children’s and young adult books. May 2nd, there will be a twitter chat at 2pm under the hashtag #WeNeedDiverseBooks- though the tag has been active since at least April 28th so feel free to join any time. (I’m @nicocoer.) On May 3rd, there’s going to be an effort to have folks buy, request, and share books about marginalized people and by marginalized authors. (You can find more details in this post.) I encourage you to check it out and to submit to the efforts as well.

It was this effort that helped me finally finish this post after months of working on it. I’m sure I could write more on this. I’m sure I could write more on how impactful it can be. But there’s too much to do that and ever really feel like I’m finished. And it goes, obviously, beyond disability- as many of the others involved in #WeNeedDiverseBooks can and are testifying, there’s too few representations of PoC, of people who don’t fall in the peak of the size bell curve, of people whose faith is not Christian (in the USA at least), or of a wide range of other folks. And what representations there are too often suffer from the same, similar, or analogous issues to those described above.

And none of us- none of us, period- should see ourselves as sidekicks of our own stories.

______

It’s also, coincidentally, Blogging Against Disablism Day on May 1st. Please go forth and check out the other posts being entered.

*Edited in. Forgot I hadn’t written it yet, oops. ~Bad Brains Princess at work~!

 

Why Privacy Matters

… even when you are willing to disclose.

Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.

They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.

They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences.

Those of you who follow this blog just for the Autism angle might recognize that sort of language. It’s the same sort of language that made our fight last November to get Autistics on the panel of another hearing so important, and that makes our objections to how we are portrayed in the media so necessary.

I’ve heard from some corners of the autism communities that the issue at these hearings isn’t about us, or that some of the efforts that autistics (and ASAN) are doing around this hearing are somehow conflating “mental Illness” and autism. Setting aside the fact that in some places autistics without ID are only able to access supports through the mental health system, and setting aside the fact that some of us have additional disabilities that happen to be in mental health, I still have to disagree. These are the same issues that we face, the same ways our voices are invalidated and our societal consent voided.

Even where we aren’t also people with psychiatric disabilities (and a number of us are, either by birth or because having society tell you you aren’t worthy tends to be traumatizing) , we should be giving our solidarity to the people who are fighting the same fights. And we are fighting the same fights against ableism, albeit from slightly different angles. We have a stake in this too- because ableism isn’t just actions. It is systemic. It impacts all of us, though often in different ways, regardless of our exact disability. There’s a reason we need a cross-disability movement, and the strength we have in supporting each other is just one (important) part of it. There is a song that goes, “None of us are free if one of us is chained,” and you know what? There is a certain amount of truth there.

There is also, of course, the fact that co morbid mental health disabilities or not, many Autistics will be served through the mental health system. The sort of policies this hearing may engender often don’t care if you are receiving services for mental health. They only care about what the services you are receiving are classified as.

I personally am multiply disabled. I have multiple reasons to care about this issue, and that is just reasons that have only to do with myself. There are even more when I think about the people around me.

I am someone who is all about disclosing. I’ve talked, in the past, about topics that are very personal and are too much information for some people. It’s ok if you aren’t comfortable with that, but I have done it for a reason: for every time I’ve had a comment or email expressing concern that I’ll disclose details of my life, particularly as it relates to medical care, I’ve received one if not multiple telling me thank you.  Because they? They don’t feel safe disclosing and it has left them feeling isolated.

And that’s the thing, isn’t it? That people don’t feel safe, or comfortable, and they feel that way for a reason. it is the same reason that disclosure is currently a political act: because the negative consequences can be so great. People regularly face discrimination when they disclose, particularly when their disclosure is about a highly stigmatized disabilities. There is a reason both psychiatric disabilities and autism are on the list of such disabilities that the Department of Labor’s ODEP put out- people unfortunately are still fired or even denied a hire on the basis of disability, even though it is against the law. Housing, too, can be riddled with discrimination, leaving affordable and safe housing harder and harder to come by.

Even disclosing in the medical community has negative consequences. This past month, we had a prominent, multiply disabled, autistic voice who had to fight medical discrimination to have a life saving procedure. So, too, do people with psychiatric disabilities find their medical needs and wishes challenged. I cannot begin to count the number of stories I’ve heard in which people I know, either personally or through my advocacy, whose medical conditions were ignored or even blamed on their having had a mental health diagnosis. Either way, they faced a denial of timely and appropriate medical treatment, not because of a lack of disclosure between professionals, but because the stigma is so great that when we disclose even medical professionals have their judgement clouded.

Just as other people with disabilities, people with psychiatric disabilities have our abuse and murders excused as treatment. Our families feel justified, or at least are told they are justified, in abusing or being complicit in the abuse of us. After all it isn’t just Autistics being shocked at the JRC– young people with psychiatric disabilities are also sent there. Indeed, there is a whole industry around sending young people with psychiatric disabilities away to isolating and sometimes dangerous camps.

I am someone who takes the risks that comes with disclosure, but no one should have the choice to take those risks taken away. It has far too dangerous a set of consequences to take consent to disclosure away from the people whose privacy it would expose. Far too dangerous to take away the right to privacy of a group that must rely on privacy in order to both get support and to avoid discrimination.

I would encourage all of you to sign the petition that ASAN has written calling out the chairman of the committee for excluding the voices of people with psychiatric disabilities in a hearing that could very well threaten their rights. If you are in DC and are reading this in time*, please try to attend the hearing, even if you just end up in overflow**.

Our privacy, even if we chose ourselves not to keep it, is a right that no one should be taking from us. Talking about doing so, let alone having that discussion without us, is reprehensible.

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* I’m sorry I didn’t get this out earlier. I tried, but kept getting stuck on the endless examples that can be found of both how we face discrimination when we disclose, and how the language that is being used to justify the lack of People with Psych disabilities is used to justify other miscarriages of justice.

 

**I personally cannot make it- not only because it’s out of my budget to go to DC last minute, but also because tomorrow I have to go face the housing system to prove I deserve to keep the voucher that makes being not homeless affordable. So please, if you can, go; there are many of us who would like our voices or at least persons represented, but cannot make it ourselves.

I Do Believe This Is…

Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.

Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.

It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.

Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.

There are sadly always many for which to mourn.

This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.

Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should”  and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.

A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.

A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.

My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.

Yes, I do believe I’m mourning.

______________

This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.

* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented  in a way that impacts the user end experience as of yet.

** Or number one, if I’m Picard and she’s my Riker.

A Quick Note On: Disability vs Impairment

In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done.  A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.

The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.

This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:

Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.

Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.

Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.

Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.

Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.

Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.

The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.

When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):

“Disability is a natural part of the Human Experience.”

This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful,  “freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.

This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)

When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.

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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.

That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to BlameA Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue

Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.

____

* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.

It Goes All Ways

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

When I was 20, I did not love myself.

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

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

“What about having kids some day?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I Was One of the Scary Kids

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Having been one of those scary kids is scary.

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

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

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

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

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

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

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

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

Being a Scary Kid isn’t certain doom.

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

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

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

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

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

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

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

Plural of Medium. . .

. . . is Media. And media is how people express and communicate. Your voice is a medium, writing is a medium, art and video and. . . Yes, even poking someone repeatedly or jumping up and down or twitching your eyes in a pattern can be using a medium- your body- to communicate.

Everyone can use some sort of media. Before I get protests, I’m including pushing away unwanted things, fecal smearing, and tiny behaviors as well as examples of use of media. Sometimes our methods and medium is ignored or not understood, but that doesn’t make it less our medium. Sometimes we can’t even define exactly what we are communicating with our media yet, but it’s a process. Sometimes, figuring out what we mean- communicating with ourselves- is even more a part of using media than communicating with others.

When we are given the chance to be exposed to new media, new methods of expression, we are being given access to more opportunities to find the way to get it out right. To find communication. Eventually some of us do gain access to media that other people understand our use of. We learn to speak, or sing, or make music or videos. We paint, or sew, or costume; we write, decoupage, rearrange, and stack. We learn to dance, to write, and to find a new way to get the message across to that it is heard. Some of us aren’t given that chance, and some people even find that other people’s media aren’t for them.

When you are someone whose communication methods or media are ignored when you want them observed, it can be an opening to find a new medium to call your own. I learned to type, I gained those skills, and I suddenly had access to a much larger community than I had when speaking or shrieking or running away or stacking dolls gave me.

Indeed, the way that typing opened up writing to me was a better medium in the end for me than those I already had- my fluency writing now is better than my speaking was at the height of my verbal ability. I can use this medium, the medium of digitized writing by the hitting of keys, in times when I can’t even verbally speak at all, in times where my message as a kid might have been lost in other people’s reactions to my screaming wordlessly because I didn’t have the right words to speak any more.

Other people find other media. Some people won’t rely on their media the way I do. Some people might rely on it more.

How beautiful would a poem in just PECs, just the way they are handed, be?

Some media is painful, or dangerous, or scary- or even, in the case of Thich Quang Duc, deadly. Sometimes that can be powerful, while other times- like fecal smearing- it can be too alarming to observers and yes, dangerous, to get across anything, even your own distress.  Sometimes the media we know isn’t sufficient to express what we mean- is your reaction to fecal smearing to recoil, maybe even freak out, or is it to find a way to figure out if someone is constipated? (If it’s the second one, I’m guessing you have a little experience with this cross media translation.)

In some cases, the solution is to find more ways to experience and express experience. Gaining new skills, or discovering alternatives. Other times it might be to just let other people react to you burning soundlessly.

The first time someone walked a friend through other signals for “my butt hurts” or that that type of pain is constipation, she nearly squeezed my hand off in joy.

Sometimes, a new medium is just a great way to accomplish something that you might not otherwise be able to do. Creating a more accurate and useful AAC device- even for less- or finding an easier way to collaboratively caption videos on the web. Applying dance to practical mobility difficulties or exploring how movements can be adapted to suit all types of bodies. Crafting tools to navigate difficult sensory environments or using virtual video distribution to share a larger message.

All media, in practice, in use, building and creating access, building and creating our futures.

What does it mean to build access together? What world can we envision when we apply love and justice to our media to find a world where we honor all people, regardless of ability, and their needs?

This summer, I and others will be attending the Allied Media Conference. It’s not a disability conference, or a topical conference. AMC is just brought together by people that believe that we can use a wide range of media to change the world. Within that larger vision, people with disabilities saw a vision for our justice, for a way to create access collectively.

Creating Collective Access allows us to make accessible the potential of media skill sharing, network, and vision planning that AMC promises to people who might not otherwise be able to be a part of it. PwD and our Chronically Ill brethren face access barriers beyond a lack of ramps and braille. Working together and treating access as a matter of community rather than individual “burden” allows us to be a part of building a world that includes us and the potential we can realize through media.

And in turn, we can make accessible the wider community- the world.

What does it mean to explore and honor our potentials, our media, our vision? What sort of world can we build when access is a part of what it means to build communities? When it is a natural part of the creation of change?

I invite others to write about what it means to you- personally or pon the grand scale-  to access media. I also hope that you will help me and others by donating to CCA’s Indiegogo. We all came up with cool things to contribute to the returns. I’m contributing custom writing- poems for cheap but if you put in a lot an article or even ghost writing- and my mom is contributing reiki sessions and herbalist consults. Others are contributing zines, books, films, tarot readings, MCS friendly bath products, and even customized baking. You can find out more, including more details about CCA, on the CCA Indiegogo page.

To Remember, Not Forget

[Content: Abuse, Ableism, murder, death, grief, relief, and feelings about these things.]

This time last week, I was getting ready for both the DC and virtual vigils for People with Disabilities who have been murdered by their family or care givers. This time last week, I was also learning that my primary abuser was dead.

ASAN and other groups around the nation (and a little bit beyond, too, on an individual basis) held vigils for People with Disabilities who have been murdered by their care givers. You can read about the details of why “now” from Zoe Gross writing for ASAN, as she addresses that better than I could in the call to action for the vigils.

The bottom line is that we live in a world where our basic blocks of culture devalue our existence to the point where our murders are called Mercy Killings. Our murders become about the burdens we place on our parents, on our cost to society, and on non-disabled people’s projections of our possible quality of life. Even our names are erased, made eternal children regardless of our age of death because of who it is who killed us. George Hodgins was 22, and still the headline read “Sunnyvale Mother Kills Autistic Child.”

When I was a child, Rick, my mother’s second husband, excused his abuse of me as treatment. The less excusable stuff he saved for when my mother wasn’t home. Sometimes, he even baited  me, purposefully getting me wound up so that I would act out in a way that would justify what he wanted to say or do.

And people believed him. The cops believed him the one time I got the nerve to call. The parts my mom saw made her believe him, at least for a while, and her notes about the behaviors he triggered are scary. In them, I look irrational and  dangerous, while in my memories I was provoked and terrified. Without knowing the cause, a kid like I was screaming, or charging to escape, or throwing myself into walls is scarier than I ever saw myself. He played my needs to suit his and to make the unacceptable acceptable. He provoked the worst to suit his own behaviors, to make sure I fit the idea of deserving what happens that we are fed daily.

When the vigils were announced, I decided that those of us who couldn’t make it to a live vigil should have to right to hold vigil as well. It’s an emotional topic for me, how people from rural areas and housebound folk are discounted in movements. Even in the (broader) disability movement, there’s a tendency to devalue those who can’t make it out to a vigil or a rally. It saddens me, it angers me, and it motivates me. So last week was spent preparing for the virtual vigil.

When the time came, I was able to do it from the Washington, DC vigil’s site. We used tiny chat, and it was kind of cool. I had everything prepped for the time, I only had to show up and do it.

Then, Friday midday, I called my mom and heard. I heard that I was free. That the constantly looking into the crowd in fear he would be there could no longer be fulfilled. That we knew where he was, and knew he’d never be able to inflict harm on me again. That all the damage is already done. That he had died, natural causes, in Pensacola, Florida.

I went into shock about an hour later, though I had thankfully managed to meet up with Melody Latimer by the time it hit full force. Thanks to her, I didn’t accidentally walk into traffic or misstep off the metro platform. She made sure I got myself food if I wanted it, and then plopped me down in a safe space so she could work and I could process and come out of it.

The same time that I was mentally preparing myself to run a chat vigil, to mourn fellow people with disabilities, I was writing a letter to friends to tell them about the end of my own nightmare. As I prepped on site that evening, I realized that I would no longer have to fear death from his hands. As I reviewed the list that managed to fit on the fliers, I realized that all it would have taken was a slip, a weight distribution in the wrong area during restraint, a swerve when I tried to escape the car, and my name could have been on that list. That that list is truly my peers.

When a gentleman came up before the vigil and commented that we had forgotten a certain little boy whose mother had poisoned him, all I could do was thank him. The number of names that could fit on the flier or the poster board is such a small percentage of the names and stories of those killed by their care givers. It’s a countless wordless horrors, the murders that society mitigates because of our disabilities, the deaths inadequately mourned because our would be mourners are told people like us would have been better off.

I feel sick, too, to think of how many of them might have been stopped if only our world didn’t dismiss our abuse as needed. If our lives weren’t devalued, how many of the PwD who were starved to death before the neglect was noticed would be part of that count? How many people would be growing older and living if the tiny abuses and dehumanizations that make people justify murder weren’t justified by disability? If we lived in a world where my abuser hadn’t been able to get away with it as long as he did would the people we mourn still be alive?

The virtual and in person DC vigils went well. We remembered. We tore down the excuses and justifications. We mourned.

In the hallowed out space of relief, I remembered what we were fighting for. Just because one of my nightmares was over didn’t mean my future was safe, or that other people’s nightmares couldn’t come true.

One week ago, we observed the deaths of the people for whom our fight for equality comes too late. We hoped to someday never see a new name on the endless list. We hoped to change it all, one day at a time. We mourned our dead, and renewed our commitment to fight like hell for the living.

The next day, Daniel Corby, aged four, was killed by his mother.