Autistics Speaking Day 2015: Appliances Talk

I don’t have any great topic to talk about that I’m up for assembling today, so I’m going to write a bit about some of the household appliances that are important in my life, and ones that are helping me live a better life.

Last weekend, my Oster Kitchen Center (which is a stand mixer that can change out parts to be a food processor, or a blender, or…) died. Specifically, the motor burned out.  This mixer has been an important part of my life for the past few years, and I have a strong emotional attachment to it. It was the perfect mixer- two bowl sizes, including a huge one, set so that it can mix even the smallest amounts of egg in the bottom. Able to handle dough and meringue, it was a great treasure for me, a dear friend.

The Oster came from my mother for my birthday a few years ago. She’d gotten it from a yard sale barely used- the woman’s grandmother had given it to her for her wedding 20 years before and it had mainly sat in a cupboard for most of that time as the woman wasn’t a wiz in the kitchen. My mom picked it up for something like $30; a good mixer with a dough-tolerant motor today is several hundred dollars, and that’s without the attachments. (Turns out that kitchenaide considers making bread for your family once a week is “commercial level of use” according to the reviewers who have reached out to their customer service on the more recent models.)

I formed a strong emotional attachment to the Oster. It was a friend to me. Just seeing it in the kitchen and knowing I’d be using it over the weekend would give me a smiling feeling. They say  that autistics might form “inappropriate” emotional attachments to objects but not people. I say it depends on the objects and the people- if the people in your life don’t know you well or don’t accept you but your object is predictable, then of course you will have stronger attachments to objects than people. I have a number of decent people in my life who try to get me that I have an attachment to, but there are also objects that are my “friends,” that I have bonded to emotionally.

The Oster and I were making meringues all last weekend. We were practicing them- my mother is gluten free, and I wanted to try using meringues for her birthday on the 27th. (Happy 50th birthday to my mom, BTW.) And then Monday I started on our final product: cute lids for the custard pies that would spell out “50” over two pies. On the second custard of 4, the mixer stopped halfway through adding the air to the egg whites. I tried the breaker box. I tried unplugging and plugging back in. I even tested the outlet. But it was the Oster’s Motor.

A close up of a pink meringue in a bowl under a mixer

I was devastated. I kept on with making the pies without the meringue, but I kept crying any time I stopped for more than a few seconds. I’m still grieving the Oster, if I’m honest, but a lot of people don’t understand that. The next day my mother let me borrow her standing mixer, but it’s not the same. the beaters don’t reach the bottom of the bowl so you can’t let it take care of things while it beats stuff. it’s harder to add things to. It’s just not the same as the Oster. And it’s not built for the level of baking I use to sooth myself.

I love baking. I love the experimenting and the building of it. I enjoy testing and developing my skills, and the Oster let me do that at a level that matched me. I might only bake on the weekends barring special occasions, but I bake a LOT on those weekends. I make my own bread, I make cakes, I make pies, I try new techniques. Now… I don’t know. It’s more economical for me to get a bread machine and a mid range mixer than a mixer that can handle bread dough regularly. I’m wary though. It will never replace the Oster for me. It won’t be the same. My heart is sick just searching. (And that doesn’t add in the food processor, which I’ll also need to replace since I use it. I have another blender, though.) Rest in machine heaven, my friend. I miss you every time I step into the kitchen.

A white Oster Kitchen Center with the Mixer part attached

The other appliance I’m going to talk about today is my Panda Washer/spin dryer.

I currently live in a second floor apartment. My joints and balance are screwy, so I walk with a cane so that when I fatigue I don’t turn my knees or ankles. I can’t carry large objects up and down the stairs very well or very consistently. Since there’s no laundry in my apartment, I’d also need a way to get laundry to and from my place to the laundromat.

Realistically this meant paying my brother to do laundry for me when it was convenient for him. He tries hard, but I couldn’t exactly be sure I’d have enough clean clothes to get me through if I had to travel. I’d periodically end up having to do laundry in my bathtub, let the laundry drip dry inside of the shower curtains, and hang the laundry all over my place. While not a huge deal to have the laundry hanging around, sometimes for a week before being dry, it’s hard to do laundry by hand.

Then a little apartment washer came through my social media feed. While a little bit pricier than I typically spend on things, it was a small fraction of the cost of a full sized washer, and it had a spin dryer. I ended up talking to my payee person and had him arrange things so I could have enough spending money the next month to purchase one.

My model is a Panda Small Compact Portable Washing Machine (6-7lbs Capacity) with Spin Dryer.  It’s more work than your typical washer but it’s a life saver. Here are the steps I follow:

  1. Making sure that the drain hose is in the sink and the drain switch is set to wash, fill the tub with the fill hose. The fill hose attaches to the sink faucet on one end, and drapes into the wash bin in the other. The fill time is about 5 minutes?
  2. Add a TINY amount of laundry soap. I’m serious, it needs hardly any.
  3. Close the lid and set the timer to the appropriate cycle length. The longest is 15 minutes, and I usually just set it to that to be certain, though it could be as low as three minutes for undergarments.
  4. When the cycle is done, switch the drain switch to drain. This takes about 5 minutes. You can optionally wring the clothes or if you have only one garment in there (like I usually do) you can throw it in the spinner while the wash tub is draining.
  5. Wipe down the wash tub, clean the lint trap and re-secure it, switch the drain switch to wash, and fill the tub again.
  6. Close the lid and set the timer to the appropriate length of time for your rinse cycle. When it’s over, double check that there aren’t suds. If there are you’ve added a little too much soap to the wash cycle and it will need another rinse. If so, repeat steps 4-6 until there aren’t suds.
  7. Drain the wash tub, and put a garment at a time, two max, in the spinner. It will spin out a lot of the water, so you’ll have something that is just damp and can be hung any where without worry. I have washing and spun something one day and been able to wear it the next.  The longest spin cycle is 5 minutes. Make sure that the load is balanced. If it is, after it is up to speed it will be very quiet. If it continues to shake, the load is unbalanced and you need to re-position it.
  8. Hang the spun clothes on hangers someplace where it can dry. There will probably be lint involved, so if you are wearing them to work or other important places, invest in a lint roller?

It is a lot of steps, but it’s a thousand times better than hand washing everything and now that my laundry is caught up, I have less of a stressor. It also is helpful for autistic reasons. I can wear literally the same dress every other day and have it be clean, instead of buying two of the same dress on sale. I can wear exactly whichever of my clothes I want when I want.

If you have easy access to a regular washer/dryer, you probably won’t understand the sheer relief I have right now. (You should probably keep with those if you have access to them- the amount of work involved can be overwhelming for people used to modern washer/dryers.) It is amazing.

small white panda washer next to my bathroom sink. It fits easily into the space and the drain hose points into the sink. The lids are closed and you can see the dials.

The down side is that I can’t wash my blankets in it. It’s not big enough for the spinner to fit the whole blankets. But it can handle individual sheets and all of my towels, and all of my dresses that can be washed in a washer. Another issue is that the drainage hose can seep a little, but it’s not enough to be a huge issue- I just have a towel there that I change out periodically and it’s fine, but buying a washer mat would also work.

You also need to keep a dish towel nearby to wipe down the lid and control panel in between tub fulls. I don’t actually count this as a downside, but some people might. The reason is that the control panel needs to be kept dry.  I had a week where the spinner timer was on the fritz because it got wet, but as soon as it dried out it was as good as new.

I also run a whites or empty cycle with bleach once a week to keep it clean and mold free. I let them soak overnight in the bleach.

So that’s the Panda washer. It has really helped me with my stress levels by making one major task less overwhelming and less unpredictable.

a red circle cross out symbol, crossed out by the same symbol facing the opposite direction in a spectrum of colors, with the words “Autistics Speaking Day 2015 participant”

Read other Autistics Speaking Day 2015 posts! Or submit your own Autistics Speaking Day 2015 post!

Changing Normal

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

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

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

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

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

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

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

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

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

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

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

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

The Horror in the Asylum Walls

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

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

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

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

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

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

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

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

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

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

Why I Reject Autism Speaks

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

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

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

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

Me: Next [time] you are on YouTube google Autism Every Day to see a mom talk about wanting [to] drive herself and her kid off a bridge IN FRONT OF SAID KID and not doing so because of her non-autistic child. Or the I Am Autism one where they took film from families not telling them that the voice over would be about autism destroying families. <3 [heart emoji] Thanks for listening!

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

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

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

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

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

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

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


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

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

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

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

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

#DearMe (For International Women’s Day 2015)

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

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

Dear Me, By which I mean young me,

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

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

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

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

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

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

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

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

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

Shown on Screen:

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

You Get Proud By Practicing, by Laura Hershey

3/8/15, International Women’s Day


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

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

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

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

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

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

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

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

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

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

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

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


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

Morénike and her two children.


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

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

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

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

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

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

Donate via the Autism and Race IndieGoGo.

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

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

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

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

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

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

Cover Image via John Scalzi and TOR

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

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

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

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

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

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

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~!