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

 

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.

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

Parents

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

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

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

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

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

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

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

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

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

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

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~!

 

Cracked Mirror in Shalott Expressions of PosAutivity: #AutismPositivity2014

I’m going to try to be really quick about my #AutismPositivity2014 post because I still need to finalize a poetry submission for Barking Sycamores– a poetry journal by and for neurodivergent writers- caption a couple of wonderful presentations, and finish a post for May 1’s #weneeddiversebooks event on twitter and tumblr. 

This April has been rough. Between the negative messaging the public is getting, news of yet more deaths of PwD at the hands of caregivers, missing persons cases, and hearings on both electric shock adversives (FDA’s #JRCHearing) and police brutality against PwD (Senate hearing live tweeted as #EthansHearing) it’s almost unbearable. In times like this, I think that the effort that #AutismPositivity2014 represents becomes especially needed. It can become very easy to allow all the negativity to metaphorically carry you away, and remembering to stop and look at the positivity can serve as an anchor.

Today I was in a board meeting for a state level self advocacy group. We are talking a lot about what we are doing going forward. Part of that involved chances to let each other “shine” and ended up resulting in some really positive feedback even during some really tense times- we were able to illustrate to people there to support us that while we may all be people with Developmental and/or Intellectual Disabilities that we are all competent leaders. While we’d keep doing what we do even if we didn’t get that affirmation, it would be so much harder- so when we hear it when it’s about something that we decided on and did, it is a moment of positivity and pride.

At the end of last month, I ended up testifying about the importance of Olmsted to my state legislature, specifically about the Keeping the Promise paper. (You can watch the whole hearing by scrolling to the hearing from 3/31/14- I plan on creating a cut that is just the self advocate testimony later but for now…) There were some hard things about this of course- I had to fit a 20 page document into about 5 minutes, they had me in the same panel as a gentleman who was vocally against community living, and the capitol building can be sensory hell. But it was still a moment of positivity. While I had the anti-community living guy on one side, on the other I had two gentlemen who used to live in a state center (read: DD institution) talk about how their lives have improved since moving to the community.  I had the chance afterwards to listen to a lot of other people passionate about some of the same things I am.

And for all the sensory hell involved, my state capitol is beautiful to look at, and I could spend hours looking at the architectural history… if it had been empty. If it had been warmer, I might have gone out to the fountain and watched the water. That instead I crept back a hall way into the more modern areas of the building where the acoustics are better wasn’t a horrible decision though- I had the chance to see how the building had been made more accessible without sacrificing the essential historical nature. (I will note: if you use a chair and are visiting, call ahead of time. While the business areas are fairly accessible, they have a history of shutting down certain elevators if there are too many chair users lobbying or protesting as a stalling tactic. Shame on them.)

There are little essential joys through all of these- and some of those I only have as much access to because of being autistic. Sure, all of these can be experienced to some extent by anyone. But there’s a particular essence to autistic joy that I can’t really explain. There’s also the sense of working with other people with disabilities that is important to have access to- the solidarity and interdependence when done right is just beautiful, especially in the face of hard things. Being autistic has been an anchor in it all.  I know this might not be your typical #AutismPositivity2014 post, but it is true, and it is what I have for you at this particular time and place.

six different colored hands against 6 different colored backgrounds. In front, the words Autism Positivity Flashblog 2014

To Raise Up An Advocate

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

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

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

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

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

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

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

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

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

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

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