Ableism on a Sunday Morning

chalice

(image of a very generic black and white flaming chalice, inside two rings, from uua.org)

(this essay was written into my phone during part of a Sunday morning worship service, then finished at home. It is the result of my very high pain levels and thus low tolerance for, well, everything today.  The statements reflected within did not necessarily all happen today, and the ‘you’ does not refer to everyone, but to specific people I will not name.)

I walked into church today and the wide, cream colored walls had been covered in beautiful, large, framed photographs of nature scenes. I stopped short.

“Why photographs?” I asked. (Grammar was not being my friend today.)

“I think they’re pretty,” the woman handing out programs said, her tone implying that I had called them ugly.

She doesn’t understand.

I want you to.

I want you to understand that the glass and color and the fact that the photos are on every wall literally changes the space physically for me, and I don’t know where my body in space is, and it’s harder to walk.

I want you to understand that the dramatic change in the sensory environment feels like something crawling and clawing its way out of my skin. The large, familiar room feels like a stranger and my body and brain cannot reconcile it.

I want you to understand that when you say, “rise as you are willing and able” it feels like hot fire pokers in my heart as I’m reminded that I could once rise willing but am no longer able.

I want you to understand that when you don’t use the microphone it means you have put up a barrier and that you don’t care. Even if honestly, I could hear you without the microphone because of my super-sonic autistic hearing, I want you to understand that accessibility for all is just as important as accessibility for one.

I want you to understand that by the time I’ve arrived at church today I have already done a lot.  I got up, I made and ate breakfast, I got dressed, I did medications and caffeine (weighing one against the other against what I’ll do) and dealt with the casual inconvenience of a local road race blocking my usual HP spot and spoon theory is a thing you should know about https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I want you to know that I had to change seats, as I frequently do, because our scent free policy has never been enforced.

I want you to know that thanks to autistic memory I recall, accurately, every single time you have hurt me, and I will never forget. And I know that as part of our church covenant I’m supposed to forgive but……I’m not sure I ever will.  And part of this is because I know that people have never forgiven me for the mistakes I’ve made.

I want you to know that when, like right now, I’m engrossed in my phone and not the service it is this technology that enables me to stay in the service at all.

I want you to know that your story is cute and clever but unless you specify what exactly the metaphor is I think you just told a tale about sentient objects or animals that made absolutely no sense to me.

I want you to know that I was proud of myself because even though I didn’t make it through the service sitting in the meetinghouse I made it through sitting in the front hall (it’s actually called the narthex for some reason)* and listening to the sermon through the speakers.  I was proud. 

I want you to know that moving my arms and hands is really, really incredibly painful these days and as a result I can’t fidget or stim and that somehow affects my speech and other body parts. I want you to know that just because I can’t find the words to speak fluently today doesn’t mean that this is how it always is for me – it usually isn’t. 

I want you to know that that I didn’t mean to knock that over or break that thing but I had to touch it the way you have to breathe.

I want you to know that I’m in pain. Constant, unending pain. I want you to know that on any given week I’m doing medication changes and seeing specialists and you have no idea how much time this takes out of my life. And unless you also have significant developmental disabilities and autism then you have no idea that the state/federal medical system I’m in is totally different for me than it is for you, just as I know that as a white person born fifteen miles from here my medical system is drastically different than that which a POC or an immigrant deals with. And I am lucky, lucky, lucky – I have better medical care than 99% of people in my situation in the United States, because (no offense other states but this is true okay) I live in the best state.

I want you to know that that I despise you. I despise you deeply and I am filled filled filled with towering volcanic rage that you can’t see how hard it is for me.

I want you to know that I know disabled people aren’t a group you feel the need to welcome, so you can stop pretending that you care.

I want you to know that I’m here anyway.

*okay so I just looked up narthex here https://en.wikipedia.org/wiki/Narthex and I’m utterly amazed because 1, that’s the east end, not the west end of the church 2, UU’s don’t believe in sin, never have, so how can we have penitents and 3, it’s not a porch.  The bell, the organ, and other important parts of the meetinghouse are in the narthex.  We totally shouldn’t be calling it the narthex but my particular UU church was built in the 1830’s by a large university nearby (after they tore down the old meetinghouse and took the land) in something called a neo-gothic style, meaning that they used local wood and now-rusty nails (we know this when we had some is-it-falling-down work/inspections last year, I assume they weren’t rusty when they were put in) to emulate the great cathedrals of Europe, so narthex it is.  Narthex would be a great name for a service dog. And now anyone who knows anything about UU church buildings probably knows where I go.  Please don’t reveal it here, thank you.

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Reaction to the UU World Article Purportedly About Neurodiversity, Spring, 2019 Issue

neurodiversity

(image of the neurodiversity symbol, a rainbow infinity sign)

I first heard about what my friend and I have decided to call ‘the catastrophe’ on a Monday night.  I happened to be away that night, but I read the UU World article online and spent a few hours comforting and being outraged.  I noted in the article Kimberly French’s incredibly awful proclamation that disabled people prefer ‘differently abled’ (no, we don’t, we never have, stop trying to make it a thing) but when I opened up my physical issue of the magazine the next day, I was prepared for the hurt within as a bystander – after all, I’m not trans.

                “Are you surprised that UUism is full of transphobia?” a minister asked my congregation shortly after the article came out, citing the statistic that 42% of trans people ‘experience regular trans-related marginalization in UU spaces’. (The statistic is in the the TRUUsT Report, in the Summary on page one, and in the main body on page 7 https://truust.files.wordpress.com/2019/01/trans-uu-experience-survey-report.pdf) I showed my emotions in a typical way, I would have shrugged.  As it was, my face was blank (my face is usually blank) but was I surprised?  No, of course not.  Of course transphobia was rampant in UUism.  After all, I’d been experiencing entrenched ableism for years.  Of course marginalized groups were marginalized.  To me, that’s perfectly normal.

                What with all of the (deserved) attention on the article-purportedly-about-trans-people, I understand if people missed the other disaster of an article, this time on page 10 of the physical issue.  (link at the bottom of this essay) Aside from me, nobody really noticed it.  But I did, because while I might not be trans, what I am – as anyone who knows me will tell you – what I am is autistic, neurodiverse, disabled.  My brain and body are unusual, a zebra in a herd of horses, so the title ‘The spectrum of inclusion: UU communities are learning to value the many forms of neurodiversity’ caught me right away.

                As did….the puzzle piece?  What the heck?  What were watercolor puzzle pieces doing illustrating an article purportedly about neurodiversity?  Didn’t people realize that most autistic people hate it?  Why not use the actual neurodiversity symbol?  “I am a person, not a puzzle,” I frequently tell people when they ask why I hate that darn shape.  (https://learnfromautistics.com/the-problem-with-the-autism-puzzle-piece/) What I don’t say is that the puzzle piece is used by charities that do active harm to autistic people, that autistic-led organizations prefer the rainbow infinity symbol of neurodiversity, and that there are many talented autistic artists out there who could have created a much better illustration than some wishy-washy puzzle pieces.

                The second thing I noticed about the article was the pronoun – he.  He, he, he.  With one exception, every autistic person mentioned or quoted in the article was a male.  This is surprising, since in the actual autistic community, people of all genders and gender representations are presented.  Then again, I shouldn’t have been surprised, as they only quoted two actual autistic men, both from the same family.  (This in comparison to the ten non-autistic people they quoted.) Even without any ability to do math or analyze numbers (as you didn’t learn from the article, some autistic people are really terrible at math and analysis) I can tell you that 2/12 is a very low percentage.

                The more I read, the angrier I got. As in the Catastrophe article, there was so much in this one that was just plain wrong.  Autistic people do *not*, for example, have eidetic memories, and that has never been considered a classic trait of autism.  We do tend to have very good memories, but eidetic ones are rare.  Pursuing AIM certification doesn’t actually mean that a congregation is welcoming to people with disabilities – at one point, my congregation was attempting the program while several disabled people left due to lack of access.  Mostly, though, what I felt was loss: the loss of autistic voices so that the voices of more religious professionals and parents could be used.

                The article on neurodiversity wasn’t a catastrophe.  It was, rather, a mess, a severe thunderstorm instead of a hurricane.  It couldn’t seem to decide if it was talking about neurodiversity or about autism or about disabilities, and so flipped between the topics and confused them.  For example, it cited modifying noise levels as something churches can do to be more inclusive, but didn’t say what is obvious to any disabled person: different people have different needs in regards to hearing things.  For some, modifying noise levels means installing a loop system for hearing aids and making sure everyone uses the microphone.  For others, it means installing sound-dampening panels so the organ isn’t so loud.  For me, it means making sure that all of the microphones and speakers never, ever have feedback, which makes me feel as if my body is being poked through with hot iron sticks and inevitably causes me to visibly startle and sometimes yell out or duck under the pews in the middle of service.  Anyone will agree that children and adults have vastly different needs and the expectations for them should be very different, yet their stories were mingled together in this article as if children and adults with disabilities were a single population. 

                There were parts of the article that were good.  A thunderstorm, after all, can bring needed rain.  The author quoted Steve Silberman, whose book on the history of autism and neurodiversity, Neurotribes, remains the single best book that I’ve ever read on the subject.  The resources listed were good.  They got the language right – we are autistic, not people with autism, thank you. 

                But just as with the Catastrophe feature article (not essay, Chris Walton, article) on page 30 of the magazine, this article should have been written by an autistic Unitarian Universalist – like, hey, me.  Autistic people are, overall, vastly un and underemployed for our education levels, there are many great writers out there, and paying a non-disabled person who probably doesn’t live in poverty to write about a population that almost universally does is just, well, icky. 

Also, did anyone else notice that this article only talked about a certain segment of the autistic population, people who seem able to fit in and accommodate others, people who others want to accommodate.  What about the child who pays no attention in RE and doesn’t seem to be getting anything out of it?  What about the adult who scratches and bleeds through the service?  What about the nonverbal person who runs around, blowing out all the candles on Christmas eve?  What about the person who can make meaningful contributions to congregational discussions on important topics, but makes people uncomfortable by their constant chewing and stimming in meetings? How do we accommodate those people? (Hey, there I am again!)

This article offers no suggestions for the harder parts of being neuroatypical, and please trust me, although I do value autism and neurodiversity greatly, there are really, really, really hard parts to it, too.  People have a very hard time understanding that autism isn’t something that affects you part of the time; it affects 100% of a person 100% of the time, and if you want my insights into healthcare, you have to put up with the fact that I frequently bleed.* You have to accept all of us, all of the time.  I shouldn’t have to leave church during a meltdown, I should be able to get the support I need to get through it so that I can continue participating in a community I love.

                Truly valuing neurodiversity isn’t just about accepting the gifts and the good parts.  It’s about accepting the mistakes and the bad parts, too.  It’s about not assuming that just because someone has a master’s degree, they can tie their shoes, and just because someone can’t speak, they aren’t educated.  I, like many autistic people who speak verbally, can and do go non-verbal in times of stress.  A congregation shouldn’t just be prepared for people to be different – they should be prepared in concrete ways, like having PECS signs, clearly marked emergency exits, and the understanding that when a person is absorbed in their smartphone, they may be communicating with you the best they can, by typing.

                A minister, who has since left, once explained to me (in writing) that I was racist because I didn’t understand his accent, and if I tried harder, and opened my heart more, I could.  I explained that, actually, I have non-verbal learning disabilities, auditory processing problems, autism, etc, which make it really, really hard for me to understand anything but conventional American English because I don’t get the nonverbal cues and inflections which give neurotypical people clues to the meanings of words.  No, the minister said flatly.  I’m racist.  I admit that as a white person, I’m inherently racist, but in this case, I just don’t think I was.  If not understanding accents was because I was racist, then why would I need subtitles on the BBC? 

                This is just one small example of the ableism and discrimination that I have faced as an autistic UU.  I remain committed to my congregation and try to live UU values, but it is really, really hard to do so on days when people assume that my flat affect means I don’t have feelings, or UU World decides to write an article centered not on autistic voices, but on the voices of those affected by autism.  Just as with the Catastrophe article, it should have been done better.  Unlike with that article, however, I honestly don’t think the writer or editor knew any better.  And unlike them, there will be no big conversations.  There will be no apology, no meetings.  It’s my honest opinion that Chris Walton needs to resign over the Catastrophe article, but over the autism article?  Eh.  It’s ableism.  It’s entrenched in UU culture, and nobody is particularly concerned. 

 

(article I’m referring to in this piece can be found here https://www.uuworld.org/articles/valuing-neurodiversity although I’d like to state, in case you didn’t catch it in the essay, that I think it’s awful and should not have been published as it is.)

 

*Yes, I’m working on it.  I’ve been working on it for decades.  Yes, I have tried every medication and supplement out there, yes, I see many doctors and therapists and yes, I’d rather you listen to my insights than get fixated on the blood.

Discrimination Across the Rainbow

 

Ableism in the LGBT community

Please note: Identifying details have been altered here, because I believed, and continue to believe, that ‘Millet’ does good work.  They do important work.  They fought a good fight and I am glad that they won.  Many of my friends had positive experiences volunteering with them.  I am certain that they accommodated other disabilities better than they did mine.  I am certain that, were I legally allowed to contact them, we could probably have worked it all out.  Unfortunately, that didn’t happen.  This happened instead.

If you know me in real life you are welcome to ask me the name of the organization.  Otherwise, I believe that LGBT groups get enough hate in this country, and I truly don’t want to add to it.  I just want to raise awareness.

                I want to tell this story.

 

                I want to tell this story because it is important that disabled people know, and are prepared, for discrimination to happen to them.

                I want to tell this story because the LGBT community should be welcoming to all people.  It should be comfortable to all people. It should be home for all people who identify as LGBT.  And yet, for many disabled or otherwise marginalized people, it isn’t.  Yes, overall, the LGBT community is wonderful, colorful, accepting, awesome – except when it isn’t, and it fails hard, very hard.  LGBT people and communities have shown me radical acceptance, but they have also shown me radical exclusion.  They have been my saviors, and they have also been the destroyers of my dreams.

                I want to tell this story so that people know what ableism is, and how they can avoid it.  I want to tell this story so that people realize their own prejudices, and think a little harder next time they encounter a marginalized person within the LGBT community.

                I want to tell this story so I can stop telling myself that it was, after all, all my fault.

 

                Sometime last winter, I attended a community meeting about an important topic run by a local LGBT nonprofit– let’s call it Millet.  Millet was working on a trans-rights issue that my county would be voting on in the fall.  Having known and loved numerous trans people in my life, I was passionate about making sure that the law didn’t pass. They were looking for volunteers to canvass and to work in their office.  Since I had a fair bit of free time and my touch typing skills from sixth grade have held up, I volunteered to come in once a week and do whatever needed to be done.  The campaign workers were happy to have me, even after I said that my significant developmental disabilities had caused frictions with people in the past.

                My first day there, I sat down with the office manager (maybe? I don’t know.  There were many different titles and I could never figure out who did what exactly.) and explained to her that I was autistic, had non-verbal learning disabilities, and mental health disabilities including PTSD. I told her that I was eager and happy to work, but that I needed clear communication and direction, for people to be kind, and above all, to understand that I would never do anything to offend them. If I did do something inappropriate, they needed to tell me clearly and calmly, because I would never, ever do anything to hurt people on purpose.  The manager, Buffy, assured me that of course they were welcoming of neurodiversity.  Of course they understood autism.  They would be happy to accommodate me.

                The first few weeks went fine.  I noticed quickly that I was an oddity in the office as my work style is always to come in, sit down, and work with a minimal of socializing.  This is not, however, the way that all offices do things. It was not the way that this office did things, instead, these people seemed to spend as much time talking to each other as they did doing actual work.  This puzzled me, but I put it on my never-ending list of ‘ways neuro-typicals are weird’ and continued doing data entry. 

                The office, one of a few spread across my county, was in an older, shabbier city to the northwest of me.  It wasn’t the best of neighborhoods or the best of buildings, to say the least, which was probably why the organization could afford it.  I was scared to go to the bathroom because of the mice that ran across the floor in broad daylight, but I figured that it could have been worse – it could have been rats.

                The mice did, however, bring my attention to problems such as the many piles of paper scattered across the office.  Those piles of paper brought my attention to the fact that there were very few outlets, and most of the computers were connected with a daisy-chain of electrical cords, surge protectors and those multi-prong outlets called ‘spiders’.  It was winter, the heat was on, and I thought about the fires that displace people too easily in my city.

                “Where’s the fire extinguisher?”  I asked.  Buffy didn’t know.  “Where’s the fire exit?”

                Someone gestured to a door in the back wall.  “We think that’s it,” they told me, “but since it goes into another person’s office that we don’t want to disturb, we don’t use it.”

                In other words, there was no fire exit.  They had never had a fire drill.  There were no sprinklers, though they assumed that the alarms worked because the building was owned by a lawyer.

                “I know about fire safety!”  I happily spoke up, in that oblivious, obnoxious way that I do.  “Let’s talk to the people next door!  Let’s have a fire drill!  Let’s clean up the papers!”

                It’s true – I do know about fire safety.  I know about fire safety because a few years before I was born, my parents house burned down due to faulty electrical wiring, and almost took them with it.  I grew up hearing stories of that fire, and being taught from an early age to be aware of exits, to keep my smoke and carbon monoxide alarms up to date, to dash out the door at the slightest whiff of smoke or beep of a detector.  Within a mile of me, a grocery store and a large boarding house burned to the ground by the time I was in the eighth grade.  When I was in college, my mother called 911 because her carbon monoxide detector was going off, and the firefighters told her that if she hadn’t, she would have definitely died in her sleep that night as the deadly gas filled her home due to a furnace problem.

                So yes – if I’m a little bit obsessive about fire safety, it is with both good reason and with the eagerness and moral righteousness of autism, which I understand can easily translate to being annoying.  However, I knew that I wasn’t being too annoying, because if I had been, Millet would have told me.  After all, they’d agreed when we talked about my disabilities……right?  They understood that I had a hard time letting go of a subject, especially one that was about safety, because their whole organization was devoted to the safety of LGBT people……right?

                Wrong. 

                A few weeks of bad health led me to not go volunteering, but in those few weeks, I continued to email Buffy and talk about fire safety.  I consulted with a minister, some friends, and a fire safety expert that I knew about what the office should do.  My eye for detail left nothing out, and they were all in agreement that something must be done. In total, I sent 3 emails.  In the last one, I mentioned that the fire department could probably help them to make their office safer, and if it was too much for them to do so, I could, because I was all! About! Fire safety!

                It was then that I got the email, which was short and to the point.  I was harassing them, I was being inappropriate and rude, and I was not welcome in any way at the organization again.  If I ever communicated with them further, it would go to their lawyer.

                Lawyers?

                Lawyers!

                Oh my god.

                I knew about lawyers.  My favorite uncle was a big-city, big-crimes lawyer for decades.  He put away serial killers, mafia dons, rapists.  He put them in jail for life.  (He also brought photos of headless bodies in alleyways to career day at my high school once and was a big hit.)  I also thought that I knew what harassment was – it was when you annoyed people so much that they put you in jail.  It was basically like being a sex offender.  Or something.

                I didn’t want to get arrested.

                I didn’t want to go to jail.

                I went to the hospital instead.  My friend Suzi came, and drove me through the darkening night to the busy city ER where I’ve, unfortunately, spent way too many hours.

                “Why are you here?”  the receptionist asked.

                “I’m going to be arrested,” I tried to explain, but I was crying too hard.

                “Take a seat,” she replied laconically.  I’m fairly certain that an earthquake wouldn’t shake the receptionist at Saint Anthony’s.

It was a weeknight.  The ER waiting room was crowded.  People were moaning, groaning, grimacing.  Ambulances unloaded in the bay.  In a corner of the room, my friend Suzi and I sat, huddled together.  I was sobbing, shaking  and dry heaving from the worst panic attack I’d had in months.  I kept an eye on the security guard in the corner, wondering when they would come and arrest me.

Suzi read the emails Millet had sent me.  She attempted to explain that I was not, in fact, going to be arrested.  I attempted to explain that yes, I would be, because only bad people broke laws, only bad people did harassment, only bad people were involved with lawyers.

It is, if you’ve ever noticed, very hard to think rationally in the middle of a panic attack.

Thoughts swirled around my head, faster and faster.  I felt dizzy.  If I had broken a law, I would go to jail.  If I went to jail I wouldn’t be able to eat anything because my sensory processing disorder is so bad.  I would lose my apartment.  I would lose my friends.  LGBT people were a minority, so they would not make idle threats.  Right? Right? Right?  I was going to jail.  I was going to jail.  What was the point of even living if I was going to jail?  I was in a hospital.  If I killed myself in the right way, then the hospital could take my organs and use them to save the lives of people who deserved to live more than I did, people who didn’t…..harass……others.  People who didn’t go to jail.

Four hours, one shift change, numerous nurses and doctors and one hefty dose of sedatives later, I was able to leave the hospital.  Someone in a uniform had read the email Millet sent me and assured me that no, I was not going to jail.  In order to go to jail, you have to actually hurt someone or break a law.  I had broken no law.  The sure, heavy voice in the uniform meant a lot to me.  I asked them at least a dozen times if they were certain I would not be arrested, because Suzi said I wouldn’t but Suzi was a civilian and what did she know? Uniform Lady – probably a charge nurse, in retrospect – assured me over and over that I wouldn’t be.

Naia, my therapist, read the email too, a day or two later, when I had slept off the sedatives and sat in her office, crying yet again.

“You annoyed them,” she explained.  “When people want others to stop being annoying, they threaten legal action, because it is an easy and fast way to get people to stop bothering them.  They are not going to arrest you.”

Naia’s words made sense, as did her reminder that there were many types of lawyers, and just because my uncle had been the type to deal with murderers who cut their victims heads off, it did not mean that every, or even most, lawyers did.  I had done nothing remotely like a murderer or a sex offender.  I had…..annoyed some people.  And they had reacted badly. 

“But why didn’t they ask me first?”  I questioned Naia.  “They said that they understood my disabilities.  I prepared them for misunderstandings.  They promised that they would come to me first!”

Sometimes I think that it must really suck to be a therapist because you have to do things like explain, over and over, that people lie.  They say things that they think you want to hear, but they don’t really mean it.  They choose the easiest path, whatever it is.  They don’t have experience but they say that they do.  They say that they welcome everybody but they don’t really mean it.

“So they were ableist,”  I concluded.  Naia agreed that yes, they were really very ableist indeed.  If they had bothered to speak to me as an equal, to assume that I truly had their best intentions at heart, they would never have told me I was harassing them or threatened me with a lawyer. Suzi agreed.  So did many of my other friends.  Knowing that they were being ableist, however, did not do much to calm my utter certainty that I was, in fact, the one who had messed up.

A few weeks later, Suzi and I visited my city’s police station so that I could learn more about breaking laws and become less terrified that I would be arrested at any moment for talking to or emailing people.  The police officer was the first female detective in my city; she was older, kinder, and overall more patient than I’d ever imagined a police officer could be.  She listened to the story.  She, too, assured me that I could not be arrested.  Although I technically had met the definition of ‘harassment’, which is 3 or more unwanted communication, since I had not communicated with Millet since, I was fine.  And even if they had filed a complaint, the worst that could happen was that I would be asked to not contact them in the future, which I was already doing.  There would be no arrests, no lawyers, no trials, no jails.

“You don’t break laws, after all,” she explained.

This actually confused the heck out of me because I know of an awful lot of cases where not breaking the law didn’t mean anything and people got arrested and shot by the police for much more minor things, but I had the good sense for once in my life to not bring up Black Lives Matter or anything else controversial like that.  I assured her that, as an autistic who follows laws, I don’t even speed.  The fact that I’m a white woman probably has much more to do with the fact that I’m not in danger from the police than the fact that I don’t break the laws, but the officer’s words comforted me nonetheless.

I got myself off the mailing list.  I did not donate to the campaign.  I watched as my friends supported Millet, volunteered with them.  I also stopped going to all LGBT events. I drew in on myself.  I only socialized with people that I knew very well, and who knew me.  I was scared.  If Millet had treated me so badly, then anyone could.  I did not go to Pride, because I feared seeing them.  At a parade, when they came by, I closed my eyes and turned my back, wondering if they would see me, and hate me as much as I hated myself. 

As I drove home from church one summer Sunday, I saw Millet canvassing on a street corner.  Instinctually, I started to duck so that they wouldn’t see me, but I was driving so I couldn’t do that.  I stopped at a red light, my heart hammering in my chest, terrified of the innocent, happy, young people out proselytizing for a cause that meant so much to them.  I wondered if driving past them meant that I could be arrested.

Logically, I know that Buffy and the volunteers at Millet have, if not forgotten the incident, then long since put it past.  Non autistic people lack autistic memory, and so the way that they remember events is probably different from how I remember them. But the thing is is that emotionally, I am just as raw and upset as I ever was. Spring and summer have passed and there are pumpkins on doorsteps.  Carving them with friends, two people made jack o lanterns expressing support for the ballot question.  I had fun eating candy and carving my own pumpkin, but those pumpkins scared me.  They were reminders to me that the LGBT community does not see me as one of their own.  I am other.  I am bad, wrong, an annoyance, a harasser.  People there do not like me.  They do not want me there.

I want to tell this story because despite it all, some small part of me does want to be there, but…..

I won’t be.

Not now…..

Maybe not ever.

Because much to my sadness and despair, it turns out that ableism is a rainbow as much as anything else.

October Is Disability Employment Awareness Month

blank brown cafe caffeine

Photo by Pixabay on Pexels.com

 (image of a wood surface with a cup of coffee, notepad and pen, and laptop computer on it.)

It’s an ever-awkward question that comes up at parties, church, community events, game nights, the library.  It’s a blank line on a doctor’s form, an awkward moment in a conversation, a sharp stab to my gut and to my soul.

                It’s a simple query, is what it is.  I’m obviously an independent adult, so I should obviously have a quick answer to it.  “So what do you do?” people ask.  “Occupation______________” reads the form.  It is a drop-down menu on a computer form with spots for ‘homemaker’ ‘retired’ ‘student’ ‘employed part time’ ‘employed full time’.  It is me, never fitting in, never knowing exactly what to say.  People want to know how you fill your time.  They want to know what it is, exactly, that you do.

                And I never know what to say here, because in my mind, I do…..nothing.

                My occupation?  Well, the closest that I can get to an answer is that I’m a professional disabled person.  And though there may be nothing inherently wrong with me or with what I do with my time, I am unable to escape my deep feelings of shame about it.

                The basic fact is that I do not look like what somebody expects a disabled person to look like.  I walk normally, albeit more slowly, with a bit of a gait problem.  I speak ‘normally’, although I can sometimes be rude and at other times lack speech.  I don’t use a handicapped placard or a service dog or mobility aids.  I’m not hard of hearing or blind or anything like that.  Yet I’m disabled just the same.  My primary disability is an autism spectrum disorder and numerous mental health and learning disabilities.  To this I have added in recent years chronic pain and back problems.  What my disabilities mean to me personally is a long and rambling journey that I’m not inclined to take you on at this moment.  What they mean for me practically is that I receive state and federal benefits from social security and that I survive on that and the very-occasional consulting or writing gig.

                “What do you do all day?”  a student asked me this past spring.  She was interviewing me for a class about developmental disabilities at a nearby college.  I told her.  “Oh, so you basically do what everyone else does on the weekends and in their spare time!” she concluded. 

                I winced, and I felt lucky, then, that as an autistic person my emotions generally do not show on my face, for at that moment, I felt utterly devastated.  Somehow, I got through the rest of the interview and showed her the door before the tears came.  In one sentence, this kid – for she was a kid to me – managed to strike at the core of all my insecurities.  Because if it takes me a whole day to do what everyone else gets done on weekends and in their spare time, I must not be very efficient or valuable.  I must be practically useless – or at least, that’s how I felt.

                What do I do all day?  In all honesty, my routine is rather boring. I wake up later than most people, and it takes me an hour or two to get going because I need to wait for the combined effects of caffeine and painkillers to kick in before I’m ready to do anything.  I have 2-7 medical appointments a week – physical therapy, acupuncture, psychiatry.  I attempt to exercise a few times a week and to socialize.  I go to library events, serve on a church committee and my city’s disability commission.  I am the backup childcare for a friend. I bake for myself and for others – I’m the designated bringer-of-cakes to social gatherings. I investigate new doctors, new treatments, for my pain.  I spend an awful lot of time on hold to my insurance company or other places.  I write blog posts and letters and annoy facilities managers about access at hospitals and museums. And I rest, because all of that stuff is utterly exhausting to me.

                I know, in theory, that what I do has value.  I know, in theory, that how much money I make is not actually connected to my own worth as a person.  My religion’s first principle is that there is an inherent worth and dignity in all, and there’s no qualifier for that all.  I am all.  I am included.  I shouldn’t be ashamed…..and yet…….

                “What do you do?”

                I walk to a nearby park and take pictures at the end of the day.  I see people walking home from the bus and the subway, and I notice, especially, the women my age.  They look so amazingly put together, in dresses and boots and scarves just so, with shoulder bags and lunchboxes and Bluetooth headsets clipped to one ear.  I don’t know what they do, but I know that most of them probably spend the day in a building doing……….something……..that earns them money, that pays for their health insurance, that builds up society and enables people like me to simply live.

                If my soul were a color at that moment, it would be the dark-green, shiny-jade color of poison-ivy envy.  Like poison ivy, the jealousy I feel burns my soul and makes me want to leave my skin.  It isn’t right, it isn’t good what I feel.  I know that.  But I feel it just the same. 

                People always have this idea of what poor looks like.  “Looking like a homeless person” is my mother’s way of saying, (despite years of my protesting this awful phrase), that someone’s clothes are ill fitting, that they are dirty, unkempt, not put together.  It has never occurred to my mother that a homeless person can hold down a fulltime job yet sleep in their car, or that not all of the people standing on the roadside holding signs are necessarily unhoused. Looking poor, in the WASP world my mother comes from, means looking a certain way – neat, clean, unobtrusive.  Despite the fact that 95% of what I wear is from thrift shops, I am careful to groom and present myself in public so that I don’t ‘look poor’ and thus, get more respect from those who run things. 

From what I’ve read, Native American tribes, more often than not, valued disabled people as white people did not.  Unfortunately, the white people who came and colonized this land I now call home often saw disability as a curse from their god, and valued productivity over anything else.  They were, as every generation has before them, attempting to survive in a world that usually required quite a lot of hard work to do so, and therefore, hard workers were valued.  I might work hard at my life, but I don’t work hard at an actual job for a living, and so I get judged through a Puritanical lens that most white people don’t even know they are seeing through.

For most of my life, I truly thought that if I just worked harder, just changed my attitude, just smiled more, then my big dream of an office job in my field would come true.  My learning disabilities and my lack of phone skills wouldn’t matter.  I would have business cards with an organization’s logo on them just like my siblings do.  I would have a name plate with my name, be listed in the company directory, have my smiling face on an ID card that I’d wear on a lanyard around my neck.  I would have an office where I could put up a few photos and tchotkes that are important to me.

I know, intellectually, that these physical representations of productivity don’t actually mean anything.  I know that there are plenty of people who will never get any of those things and that they are just as valuable as I am.  But I also know that some part of me will never stop longing for them. 

I’ve heard many people say how much they despise their work.  I’ve heard many say how they wish they could just quit, but they can’t, because of the benefits and the salary, because of their need to maintain their current lifestyle.  I wonder if any of those people know how much I would absolutely (but not literally) kill for a job like theirs.  I wonder if any of them ever pause in the middle of a long, boring task and think ‘damn, I’m lucky.  I get to have lunch in a cafeteria today’ or ‘I have my own mug in this office’.

The world is drowning in sorrow and grief and problems.  All around me, people are doing what they can, how they can, trying to survive the fast-rising waters.  If I weren’t in so much pain, I could probably work an office job for 20 or even 30 hours a week, but if I ever did that – if I ever earn more than $1,100 a month – my social security will be cut off for life, because I will have proven that I am able to work, and thus, not really disabled.  No matter how many liberal politicians we elect, this is unlikely to change, because a fundamental belief of the United States is that if you don’t work, then you don’t deserve to live about the poverty level. Which means that I’m stuck at this level for life.  I won’t pass go, I won’t collect anything but the bare-bones minimum to live on.  It’s like the ‘jail’ card in monopoly except that I have no chance of rolling doubles or getting a card to go free.  I’m a professional disabled person, and this is the best I can do.

Maybe, though…..just maybe….one day….they’ll add another option to those drop-down menus.  ‘Constrained by my body, neurology and society into a life I don’t really want’ isn’t a convenient box to check, but it is my life, and it is the life of millions of Americans.  It’s about damn time that this was respected as much as any other occupation. 

Neuropsych Testing: a government-ordered test guaranteed to lower your self esteem

 

So not many people know this, but to the United States government, there always remains the distinct possibility that your disability, the one you were born with, could some day change and poof! You’re not disabled anymore.  Because of this belief, when you apply for certain services, it wants to know how recently you were fully evaluated and tested for your disability, and if it has been more than  a certain number of years, they would like you to prove that you’re disabled.

Recently, my state wanted to know whether my primary disability was autism or mental health disabilities.  To me, this is like asking if oobleck is a liquid or a solid (it’s both!) but since I do need services, I dutifully trekked into the Big City and endured about six hours of neurological testing. To say it was unpleasant is an understatement.  There is nothing better to make an adult feel like a toddler than to undergo tests designed to root out your weaknesses and slap you with a functioning label.

The tests start with your initial appointment.  The goal of this appointment is to get an in-depth medical history.  In-depth, unfortunately, does not necessarily mean accurate.  As I would discover later, the interviewer got several things wrong on my medical history.  Some of these were significant things, like the reason I qualified for social security disability.

“So you qualified because of your back injury?”  the doctor – let’s call him Dr. Z – asked.

“No.  Because of my autism,” I distinctly remember telling him.

A month later when I sit down to look at my medical history, it says that I got it due to my autism and back problems.

Medical histories are, overall, a very weird thing, because you are expected to bare your soul and most private secrets to somebody you have just met.  The doctors want to know, among other things, what your birth was like (“I have no idea!”  I said to Anna, later.  “It’s not like I was there!” She looked at me oddly.  “Yes, you were,” she pointed out.  Oh.  Yes, I guess I was.  But it’s not like I remember it!)  They want to know about your family, what they do, their level of education, illnesses, medical and mental.  Your childhood, any significant head injuries, hospitalizations, abuse.  They want to know every medication you’ve ever been on.  (How about I just copy this entire psychopharmocology textbook down and we will call it a day.)

“How often do you socialize?”  Dr. Z asks.

“Well, does church count?”

“I don’t know, does it?”

“How many friends do you have?”

“How do you define friends?”

“However you do.”

Almost all of the questions are open ended, which is the sort of question that I’m the worst at.  Looking over their report later, I see that I left things out.  I assumed that by explaining I see my niblings that they would understand I also see my siblings, who are the parents of the niblings.  They wrote down that I had no contact with my siblings.  Unfortunately, I think that such misunderstandings are basically impossible to avoid. When you have a neurotypical person interviewing an autistic person, things will get left out.  Things will get overlooked.  Autistic people often don’t offer any more information than precisely what was asked for.  When others want us to elaborate our answers, we freeze, and the words don’t come.  When I am writing, my brain works better, smoother, than when I am speaking.  This is a simple fact.  This fact is not at all reflected in any of the testing that I did.

I was being interviewed by two strange men – Dr. Z and his graduate assistant, who sat, awkwardly typing, in a corner of the small room the entire time and didn’t participate in the conversation – I think he was just there as a scribe.  They asked me about my dating life.  I blanched.  I read both of these men as straight and knew both of them not at all.

“I – I can’t talk about that.  Not in front of you.”

“Okay, well, why did you write down ‘queer’ as your sexual orientation?  How is that different from bisexual?”  Dr. Z asked.

I am genuinely confused.  It’s 2018, and we are in one of the most liberal cities in the country, and he doesn’t know the difference?  I try to explain, but I’m not sure if he gets it.  I do know that I’m utterly humiliated when the word ‘menstruation’ is written down on the report regarding some of my medical issues – I had couched it in the polite euphemism of ‘that time of the month’.  I was raised to believe that men had absolutely nothing to do with that sort of thing, and would be perfectly happy pretending that 50% of the world didn’t know that you-know-whats existed.

Two weeks later.  I get up, bright and early, and am shown into yet another tiny, windowless room with fluorescent lights that flicker and hum.  This time it’s a different doctor as Dr. Z has gone on vacation.  A different graduate student/doctoral fellow.  The doctoral fellow will be doing the actual testing.  I have previously explained that I have taken many of these tests numerous times before, and I have also studied them from an academic standpoint.  For this reason, some of the tests that I will be given are somewhat obscure.  Well, let’s go then.  Time to start.

One of the things I have always prided myself on is my memory.  I have a good memory.  I can remember being six months old!  I don’t know any neurotypical people who can do that.  But these tests of memory aren’t like that.  They aren’t tied to emotional events.  They are strings of numbers that I repeat back.  They are lots of words I have to remember.

In the hallway, a pager goes off.  I startle, look towards the door, wait for it to stop.

“Please remember that this test is timed,”  Fellow says.

“Yes, but there’s that loud noise!”  I exclaim.

“You are invalidating the tests if you interrupt them,”  he says in a way that makes me think he is only pretending to be patient.

“You honestly expect autistic people to ignore that noise?”  I ask.

Yes, apparently, he does.  This incident was written on the report as, “She startled with an audible gasp and postural rigidity when a pager beeped in the hallway on three occasions.”  Which is some really weird wording for ‘she was startled because she’s autistic and startles easily’, but the entire report is written in really Fancy Medical Language.  I reported, denied, stated, complained – I never just said anything.  And for the record I don’t think I complained about anything, other than the stupid beepers going off, (It’s 2018, why are you using pagers?) and one particular test.

More words, more numbers, some simple math that I know I mess up.  I remember that a chisel is a tool.  I circle all the X’s on a page of other letters.  I play several weird dot-to-dot exercises.  Then it comes – the worst part.  The stupid-little-faces part.

In this test, you are presented with a grid of about twenty or thirty squares.  About half the grid is filled in with small photographs of faces, of all ages and ethnicities.  You look at the grid, then it is taken away and you are given a lot of little cards with faces on them and a blank grid.  Your job is to not only recognize the faces that were on the original grid, but to put them in their original spot.  This proves to be basically impossible for me, but I still have to do it three or four times.

Another test with faces.  Match the face to the emotion.  Once again, I have absolutely no idea.  I explain to the tester that I don’t need to do this because in real life I would just ask the person how they are feeling.  I would explain that I’m autistic and I have trouble telling if they’re mad or not so could they tell me, please?  This does not get me out of this test, or the next one, where I hear a voice and have to match the emotion in the voice to one of four faces.  The really tricky part of this test is that the race and gender of the speaker’s voice does not necessarily match the race and gender of the pictures on the cards.  I am supposed to do it by tone of voice alone.  Then I am supposed to guess what they are feeling.  I say guess because, well, it really is just a game of guessing to me.  When in doubt – which is the majority of the time – I pick angry. In my experience it is always better to assume that people are angry.

Okay, here’s an easy test.  Name that object.  There’s a flipbook with a drawing on each page, and your job is to name the thing in the picture.  Some of them are weird.  Harmonica, accordion – this seems to be a little biased, I mean, would I know what an accordion was if I hadn’t watched an enormous amount of television as a child?  Probably not.  Chair, tree – what is that called?  I know what it is, my mom has one to hold up the roses which never bloom – trellis.  That’s a trellis.  That seems incredibly culturally-bound.  Would someone raised in an apartment building know what a trellis was?  Probably not.  Wait, what’s this picture?  It can’t be.  It is.  It’s a noose.

A noose.  As in, a picture of a loop of rope hanging from the top of the page, a traditional hangman’s noose.  I am outraged.  I am shocked.  Despite the fact that the report said I had a ‘flat, constricted affect throughout the interview process’ I remember my body and brain exploding at this injustice.  Did they have any idea of how incredibly insensitive this picture was?  How would seeing that picture feel to a POC?  Did the Black Lives Matter movement mean nothing to them?  I didn’t care that the test was from the 1950’s.  It was totally out of date, it was inconceivable to me that they didn’t see the racism in that small drawing.  A honest-to-god effing noose.

The tester promised to bring it up at some meeting or another.  I have absolutely no doubt that he never did.  When I got my results his supervisor had never heard of my complaints and dismissed them.  After all, I’m not a psychologist or a neurologist.  Who am I to question the quality of a test designed to tell them how good I am at naming objects?  At one point in the report it said that my thought content was ‘generally appropriate to the topics discussed.’  I’m pretty sure that the parts where I was inappropriate were when I talked about social justice issues like racism, classism, and ableism and the myriad of problems that the tests would cause for people who were not, as I was, raised in an upper-middle-class, white family.  A noose!  I still can’t get over it.  2018.  A noose on a neurological test, a test which is presumably being taken by people who are likely a little bit more prone to suicidal ideation to begin with.

We went on – I requested and was granted a break.  There were some little plastic squares with red and white triangles on them.  I had to arrange the squares so that they matched the picture, like tangrams, except at the end you don’t get the satisfaction of seeing a bird or a house, you just get the knowledge that you scored badly on a test that toddlers could do.  On the fifth or sixth one I couldn’t make the pictures match no matter how much I turned the squares and triangles and the test ended.

This next test is a weird one.  It involves a red bead, a blue bead and a green bead, all on sticks.  The goal of this test is to make the pattern of beads-on-sticks match the one that the examiner made, using the fewest number of moves.  I’ve never seen this test.  It’s weird.  It definitely feels like a baby toy.  (It’s apparently called the Tower of London.  The inventors obviously don’t think anyone taking the test know what happened in the real Tower of London.)  I was average or below average on this ‘test of planning’.  Planning what?  I have no idea.

I looked at a picture and told a story – the story would have been much longer had I been allowed to type it.  My story was apparently ‘overly descriptive’ – I wrote ‘several complex sentences regarding the gender roles that were assumed by the depicted figures’.  Ha.  This was definitely me being snarky on purpose and the tester missing it entirely.  I love poking and prodding at stereotypes and gender roles and challenging people’s expectations.  When I was told to repeat back a story the tester read to me I did so with social commentary because, well, of course I did.  That’s how my memory works.  Everything is tied to emotion and my own interpretation of things.  I don’t remember that Mrs. B lived in this neighborhood because I was told; I remember because this the story said she was a single mother who worked as a waitress and I thought that neighborhood was very pricey for a single mother to live in on a waitress’s salary and thus the whole story was unrealistic.  (I am fairly certain that the tester did not appreciate my commentary.)

There were a few more tests, including naming every word you can think of beginning with the letter ‘F’, which of course meant that my brain went ‘Fuck!’ and then ‘I can’t say fuck! What are other words that begin with F?  I can’t say fuck in front of the tester!’  I also named animals, which for me consisted mostly of dog breeds, and I clicked a button on a computer every time the letter X came up.  I don’t see the point of that test at all and I was utterly exhausted by this point.  I went home and collapsed.

Two weeks later, I faced Fellow and his supervisor, Dr. A, in a small office.  I asked my cousin, who works in the same medical facility, to come along as support, because I knew that I would challenge some of their findings and I also knew that I couldn’t do that without someone backing me up.  It…..did not go well.  To say the least.

“It’s like they didn’t even bother to get to know you at all,” my therapist said a few weeks later, looking at the testing.

“Nope,” I agreed. “They didn’t.”

Dr. A suggested that I undergo speech therapy and social skills therapy.  I said no, I was in that therapy for 20 years and I had accepted the fact that my social skills were not going to improve any longer.  She suggested a parent-led organization which I have had bad experiences with in the past.  She suggested…….not much else.

Overall, I feel like the entire testing process was a total waste of everyone’s time, energy, and money, except mine, because I didn’t pay for the testing.  The state wanted it, the state paid for it, the state got it.  I officially have Autism Spectrum Disorder as defined in the DSM 5.

No surprise there.  What was surprising was how after all these years, neuropsych tests still make me feel incredibly stupid.

Not Joking: Why I Won’t Be Playing a Card Game That Directly Oppresses My People

 

Wow. Am I exhausted! Not just now, but always.  Living my life means living in a perpetual state of exhaustion, punctuated by short spurts of productiveness brought to you by the makers of caffeine. It’s not just the physical and mental work I have to do to keep myself alive and in decent shape – it is dealing with and living in a society that constantly forces me to prove myself to them and which never, ever lets me let my guard down. I truly think that one of the most tiring and depressing things about living with a disability, especially a developmental disability, is dealing with micro aggressions on a day to day basis.

                A micro aggression, if you didn’t know, is a subtle form of discrimination faced by oppressed groups.  For example, a racist microaggression is when someone crosses the street when a person of color is walking near them.  A transphobic microaggression is when a form only has two boxes, male and female, for gender.  An abelist microaggression is people assuming that intelligence equals IQ, or that someone’s verbal abilities represent their actual ability to express their thoughts.

                The thing about micro aggressions is that you aren’t always prepared for them.  They come at you constantly, but at irregular intervals.  Each one is like a punch to the gut.  Each one leaves me a little bit tired.  Dealing with them over and over and over, however, leaves me exhausted beyond belief.

                I will give you an example.  A few years ago a card game came out called ‘Cards Against Humanity’.  It was a rip off of ‘Apples to Apples’, which is a fun, easy game about comparisons.  I love words and I process language much better than I do other forms of media, so I love Apples to Apples.  It’s easy to learn, fairly quick, and requires no strategy or skills that I don’t have.  (Unlike, say, Settlers of Cataan, where you are expected to not only plan your moves but predict other’s moves.)  So when my friends started playing ‘Cards Against Humanity’, I joined in, thinking it would be a fun way to spend an evening.

                As it turns out, it was an exercise in ‘do I speak up or do I stay silent in the face of micro aggressions’.  The game works with white and black cards.  On the black card is a situation or a question with a blank in it.  Each player is given a number of white cards which they submit to the person who is the dealer that round.  The dealer picks the white card they think fits best.  It works the same way as Apples to Apples, except that these cards, I quickly discovered, are not mean to be fun.  They are meant to be mean.  And they succeed.

                I remember coming across the white card ‘the profoundly handicapped’.  I’m the first to admit that disability is funny, but disability is only funny in a specific context in the disability community.  I know many people who would fit the description, ‘profoundly handicapped’ – although the makers of the game clearly didn’t know that the term handicapped went out about 30 years ago and the term is disabled now.  When I read that card, I thought of people I know – Sean, who mentored me and gave me my first political job, Missy, who never spoke a word but whose blue eyes and wild laugh fill my heart with joy, Brooke, who’s knock-knock jokes never fail to crack me up.  I thought of my friends who have fought medical battles and refused DNRs, who have been knocked out by a seizure and gotten back up on the stage, who have given me support when I needed it most, driven me to the ER when I was in a crisis, texted me back in the middle of the night.

                I quietly removed that card from the deck.  I then went through the cards and removed a few more, ones that referenced things like dwarf-tossing.  I thought of my friends who are Little People, and whose bones break so easily.  My stomach twisted as I imagined them being tossed in the air, the butt of a joke.

                Cards Against Humanity is an excellent example of how society normalizes micro aggressions.  Because all of the cards are meant to make people laugh, people get into the mindset that no one card is worse than the other.  This is not true.  The basic fact is that oppressed groups do not have the social capital to defend themselves against an onslaught of micro aggressions because they are so busy dealing with bigger macro aggressions.  We are trying to ensure our basic civil rights, so a card game or the off-color joke a cousin tells is simply too small to bother with. 

                This bothers me, because I think that small micro aggressions such as this card game, which normalizes making fun of people with disabilities, black people, Jewish people, really any minority group that you can think of, lead to bigger micro aggressions.   It allows people in privileged positions, such as white, cis, nondisabled men, to laugh with no repercussions.  They do not see how their laughter directly impacts public policy.  But the fact is that a guy who thinks making fun of ‘the profoundly handicapped’ is okay is not going to speak up when a bill comes to cut special education funding, because due to this card, he has already ‘othered’ that group.  The normalization of racism, where white people ‘othered’ POC, can be said to be a direct cause of segregated schools, red-lining and sundown towns.  The normalization of making ableism means that nobody notices the lack of disabled people and disabled voices, and it is very hard to complain about a public policy when the policy makers are meeting in an inaccessible room. After all, w e don’t care about ‘others’, we care about ourselves.

                Sometimes I feel that I straddle two worlds.  On the one hand, I’m an intelligent, white woman, raised upper-middle-class, with a master’s degree, and I always appear put-together if I step outside my door.  On the other, I’m surviving on social security, struggle mightily in day-to-day tasks, and spent years in special education, which means that my knowledge has significant gaps.  I do things slower – I process things slower, I respond slower, I even walk slower.  This doesn’t mean that I’m lesser than my friends who do things fast.  It just means that I’m different, and that’s okay. 

                Because I process things slower and make decisions slower, it took me a few years to be able to stop ‘editing’ the cards when we played Cards Against Humanity, and instead, to decide that I was no longer going to play at all.  I decided that by playing, I was contributing to my own and other’s oppression.  I was saying that it was okay with me for others to make fun of people.  And it’s not.  It is not okay to make fun of people. It is not okay to treat them badly.  The game made me a worse person.  It made my friends worse people.  It did not encourage us to be our best selves or our kindest selves, and if there is one thing I know for sure in this world, it is that you’ve got to, you’ve simply got to be kind.

                Luckily, as my friends and I matured, scatological humor lost its funniness.  We moved on to other things, other pursuits.  Many of my friends are deeply involved in progressive political causes, and a number of them have children whom they would never, ever expose to a game like Cards Against Humanity because they want their children to be kind, generous, humble human beings.  Whoever made that card game was none of those things.  They might think they are, but they are not.

                Somewhere in the Bible, somebody, I’m pretty sure it was Jesus but what do I know, I’m a UU, says something along the lines of, ‘remember that whatever you do to the least of mine you do to me’ – basically, however you treat any oppressed group is also how you’re treating those closest to you, those you love, because we are all the same.  We are all humans, and living in this society we all contribute to micro aggressions.  And if you wouldn’t want your mother or best friend to feel hurt – physically hurt, like a knife in the gut, like a PTSD-flashback to being called the r-word in 3rd grade, like a nightmare that leaves you sweaty and screaming – then you shouldn’t hurt anyone.

                I’m not quite there yet, but micro aggressions can only be driven out of society by micro actions. By publicly refusing to play Cards Against Humanity, I’m publicly saying that it is not okay to treat people that way.  Missy cannot speak but she does not deserve to be made fun of, and neither does anyone else I know.  They deserve kindness.  So do you.  So do I. 

PS. MicrosoftWord says that microaggression is two words. I’ve seen it written as micro-aggression, micro aggression, and microaggression.  I’ve truly no idea which one to use so I have used all three.

PPS.  I sent this essay to a friend of mine to review.  He disagreed with me because, he said, the makers of Cards Against Humanity do good things – they donate to anti-Trump causes, they believe in the same progressive politics that I do.  From the research I’ve done this appears to be true.  However, I do not think that this excuses their abhorrent behavior.  They continue to profit from the direct oppression of others.  This is inexcusable.  In a time when the vast majority of people with disabilities live in poverty, their jokes about ‘the profoundly handicapped’ keep us down while allowing them to live, I assume, at least comfortable lifestyles.  (Because no matter how much money they donate to charity, I’m willing to bet my non-existent cash that they don’t skip meals or deny themselves basic necessities of life to save for their prescriptions.) The only way to solve this would be for the creators themselves to publicly denounce the game, admit they were wrong, stop selling it, and donate any profits they have left over to causes which directly impact the people they made fun of in positive ways. 

Why I Dislike Vocational Rehabilitation

I make no secret of the fact that I dislike my state’s rehabilitation commission, or SRC.  It is the state agency that is charged with helping disabled people find and keep jobs, but despite my having worked with them for over a decade, they have never actually found me one.  They have never actually helped me in any way.  Every employment opportunity that I have had is the direct result of my own hard work and making connections – it has nothing to do with them.  Yet, a requirement of receiving social security disability is that you work on getting a job, and so again and again, I find myself in a small, closed room with an overworked, underpaid counselor.

Recently, in order to save money, the state announced that they would close the current SRC office that I go to.  They printed flyers about how they were ‘moving’, and this angered me, because they were not moving.  They were closing.  The office – a windowless warren of rooms behind a Chinese restaurant that somehow always smelled bad and where the only parking available was for one-hour increments – was closing.  The counselors were being scattered – some close by, some much further away.

With only a few weeks notice, they held a meeting. I, being the kind of person who truly wants to improve the services I receive, showed up.  Unfortunately, due to a confluence of factors – the short notice, the difficulty of the location, the fact that it was on a night when many other meetings were taking place – I was the only consumer there, aside from two young adults brought by their parents, neither of whom said anything.

I entered the room.  A stranger asked me who I was – not for the first time, because I don’t have a visible disability and was dressed neatly in a sundress and sandals, I was mistaken for a disability professional.  (Which I am.  I just also happened to be a SRC client.  They had trouble with this concept.)

“Oh, who’s your counselor?” they inquired then.

I told them.  “Name, name.”

“Oh she’s awesome!” they enthushed.

I considered.  I considered the fact that in three years I had yet to get a viable job lead from her and that she had outright said that my many medical problems made helping me look for work difficult.  “Well,” I said with as much diplomacy as I could muster, “that’s one opinion.”

The truth is that I like my counselor.  She’s a good person who shares similar values to mine.  But as an actual vocational rehabilitation counselor, she has done almost nothing for me.  I would say that is a failing of her, except that I have had other counselors who also did nothing.  By this point I have basically concluded that it is the agency, not the individuals, that is the problem.

About two dozen people eventually showed up, the vast majority being staff from the office that was being closed.  It began badly because there was no microphone.  None of the staff thought that this was a problem because ‘they could all talk loud’.  To me it was a simple matter of accessibility – I mean, the meeting is supposedly for disabled people and you don’t have a microphone? Nope.  They don’t.  and they don’t care, and then – the Commissioner entered, the person in charge of the entire state agency.

“I’m 99% certain that this is just going to be a gripe fest,” I texted a friend.  To nobody’s surprise, I was right.  What I was surprised by was how the Commissioner seemed unable to deviate from her script, how she truly did not seem to care about the consumers or the staff, and how incredibly ableist her comments and attitude were.

Commissioner lied.  This is a basic fact.  The flyers that her office printed out and mailed said that the office was moving.  Moving implies packing up an office and relocating it to a different place.  They were in fact closing.  Just because everyone at Dunkin Donuts is now working at another Dunkin Dontus doesn’t mean that the empty Dunkin Donuts is still open.  If you can’t physically go to a place and find the same staff and administration, if you have to go two cities over to another Dunkin Donuts entirely, then it hasn’t moved.  It has closed.  The employees, of course, denied this.

The commissioner readily admitted that she didn’t have a disability, and that she knew that her hiring, last summer, had been somewhat controversial.  But!  She took pains to point out, she did have a very good sob story about a family member with a disability.  No, she didn’t have a background in disability services or vocational rehabilitation or disability studies, she had a background in workforce development, but! She had shadowed a counselor for an entire day! So she knew exactly what it was like.

I stared at her with what I hoped was an expression of utter no-shitting-me.   I asked, “If you were asked to be the head of the NAACP, would you accept the position?”

Commissioner is white.  I had hopes that she would understand the metaphor.  Despite my being the autistic one, it went right over her head.  “Yes,” she said.  “If they asked me to, yes, I would.”

It was at this point that I probably should have left.  Instead I kept texting my friend (which is why I have such accurate notes on what happened despite it happening a few months ago.)

I learned that 67% of consumers were under the age of 35, which was why the agency was focusing on them and on high school aged youth, because people had to get into the work mindset early.  I didn’t understand.

“What makes you think that you’re doing such a good job with those over the age of 35?”  I asked.  “What are your statistics there?  Are they all getting jobs and enabling you to focus on young people?”

Commissioner and her staff had no answer but assured me that they could get me the statistics.  I declined.  I knew that any statistics they gave me would more than likely be bs.  Just a few years earlier, after all, the agency listed me as having a full time job, a total success, when in fact, it was an eight-hour-a-week academic fellowship for nine months.

The office was closing because of lack of money.  Period.  There was no money, the money didn’t exist, they didn’t get it, blah blah blah stuff I don’t understand.  The building owner, seated at the back, offered on the spot to reduce the rent to 1/3 of what it was now.  The Commissioner said nope, there was no money.

“But you’re asking staff to drive more to meet people?”  a counselor who was being relocated asked.  “And to meet them in the community?  And to move all of our offices to X, Y, and Z?”
“Yes,” the Commissioner said.  (Later on at the meeting she would emphasize how staff should be driving less to save money.  This was the point where I began to look for her second head.)

“So how much will that cost?  Will it be comparable to the rent?”

Commissioner didn’t know.  She had absolutely no idea of how much it was costing to move the office or if the savings would make a significant dent in the budget.  She just knew that by crossing an item off a list, she could save X dollars a year.  She didn’t care about the fact that moving offices was not just a hardship for the counselors, it was a hardship for the clients, too.  The office that my own counselor is moving to is one where I had numerous meltdowns because counselors there insisted I act neuro-typically and I was unable to do so.  I am scared of that office.  I am scared of the people I might see there.  My counselor knows this.  She says we can maybe meet at X library.

“You mean the library where that guy was stabbed last fall?”  I was shocked.  “I don’t want to go there!  It’s scary!”

The commissioner engaged a lot with me because I was the only consumer engaging with her.  She admitted that she needed a lot of guidance and help from disabled people, but shut me down when I said I was happy to do so only I was a professional and I expected to get paid.

“It’s a huge change for everyone,” she said.

Well, yes….but it’s worse for us.  I have meltdowns over daylight savings time.  It is really, really hard being disabled, it is a huge inconvenience, and she was moving people around like checkers, with no consideration whatsoever for our feelings and lives.

“You could always do skype meetings!” Commissioner suggested.  “Or Facetime!”

“Oh, no,” one counselor said, aghast.  “That would make it too easy for people.  When they have to come into the office, they have to get dressed decently and make it here on time, just like you would for a job.  It gives people practice.  Skyping would make it too easy for people because they wouldn’t have to leave their house.”

Given how incredibly difficult it is for many disabled people, including myself, to leave the house I was unmoved by this.  Also, I had no idea that I was being judged on my appearance every time I visit the SRC.  I happen to wear dresses and skirts a lot because they are more comfortable, but would showing up in jeans and sneakers mean that I’m not ready for a job?  Sheesh.  The counselor emphasized her master’s degree.  I felt like rolling mine up and whacking her with it.

The basic fact is that the state agency charged with integrating disabled people into the workforce doesn’t give a single flying squirrel about disabled people.  They have no idea how hard it is to live our lives, to juggle doctors appointments, to remember to eat and take meds and exercise and find housing in this brutal market.  They only care about statistics.  They couldn’t tell me how many people with disabilities were employed by SRC, only that they were the 2nd highest in the state in terms of the proportion of PWDs employed there.  They talked about entrepreneurship like it was a brand-new idea straight off the Starship Enterprise.  They listened, but they only heard what they wanted to hear.

I’m still disabled, they’re still jerks, and I still don’t have a job.

“When your health problems clear up,” my counselor tells me.

It is looking increasingly likely that my health problems will never clear up.  That I will always be as disabled as I am now, that I will always be in pain.  But isn’t the whole point of the SRC to show that disabled people can be good employees, that we can do things and achieve things?  Yet how can that ever be done when the Commissioner, who sets the tone for the entire agency, so obviously doesn’t care about the people whose lives she affects so much?

She doesn’t care.  So why should I?  So why do I?

“Imagine,” I said to her at the end as I handed her my card, “imagine if instead of being against you, I was working with you.”

I can imagine.  I can imagine a system of mutual respect, where strengths and not deficits are emphasized, where all people, regardless of disability or severity of their impairment or their age, are treated the same.  I can imagine.  It is too bad that the commissioner cannot.