When they asked me for my weight
As I entered the scan
I hesitated.
I didn’t want to number me.
I could’ve been dying.
I gave them my number.
They took it.
My stomach twisted.
They told me that I was ok.
They didn’t know why my heart raced
Why my chest tightened.
I was going to be okay.
Go home.
The email came two days later.
Passive. Automatic.
“You’ve got a result.”
I look. I always look.
Examination technically suboptimal
due to the patient’s body habitus.
Within the stated limitation
the mediastinal, hilar and axillary structures
are unremarkable.
There is no definitive evidence
for pulmonary embolism…”
For a moment
For the space between my (too fast) heartbeats.
I lost faith.
For is it not the technology
That has failed my body?
Was it not for bodies
That this technology was formed?
Is it not the medicine
That has failed my body?
Was it not for bodies
That this medicine was made?
Is it that my body,
At my number
Was deemed unworthy?
A body’s worth cannot be measured.
There can be no number
For my body is infinite.
Even as it dies it becomes.
My body is not obsolete.
Mara Passio

10 Minutes

I am disappearing into my chest cavity.
I say it feels safe there, but really it just feels lonely.
Lonely is what I think I deserve.
My body is a disaster zone, alarms ringing
Was it five? -No it was six ER visits this year.
I’ve only had surgery once.
This year.
My bracelet reads
It deadnames me and gives my mother’s cellphone.
I’m too sick to be queer.
At the apex of mind, body, spirit,
My life has narrowed.
Food, sleep, meds.
Queer doesn’t matter if I can’t make myself eat.
For 10 minutes I lay in bed listening to my alarm
Begging my body to move
I would’ve seemed peaceful
Deep asleep
This body that refused to represent who I am, even in waking.
It’s more than disconnect. It’s distrust.
I am disappearing into my chest cavity.
I say it feels safe there, but I really hate it there.
It’s force of habit that leads me down this road.
My body is a war zone,
between what is and what I want it to be.
My rage has not fully quelled, but softened.
I might yet emerge to find myself fully alive.
Queer, even. Queer and Sick.
Mara Passio


Congratulations, your partner is autistic!

I knew you could do it, he says.

It seems silly in retrospect how utterly terrified I was.
Except it wasn’t.

The words I feared,
“We do not believe you fit the criteria for autism spectrum disorder,”
Resounded around my ears as I slept.
Potential invalidation, so present
Doubt entered my mind.
I ceased to find comfort in the term.

I am autistic.
I have a lovely piece of paper now saying it’s so.

You know what I want to do now?
I want to rock back and forth and shake my hands and shout
I was already autistic.
I was autistic this whole fucking time.

My head is buzzing as I write these words and the tune is coming to a crescendo
as I think of all the times as a child I stared in the mirror and practiced my smile
and desperately, desperately tried to suppress my flapping arms when I felt unsuppressed joy.

I am not autistic because a piece of paper pronounced me so.
I am not autistic because a doctor determined I fit the guidelines.
I am autistic because I like to touch my own arm hair, because it makes my skin happy,
and because I cover my ears at loud noises and when a pretty noise comes my way I start singing.
I am autistic because the ringing in my ears can only be counteracted by a low hum in my chest.
I am autistic because I like to touch my lovers’ faces, caressing their eyelids and poking foreheads.
I am autistic because I am viscerally human in my own way, in a way that feels and looks other.
And I am other. And I exist in brilliant light.

Mara Passio

Rolling Cigarettes

TW: Emotional Abuse
This is something a little different. I’m sharing a poem I wrote a while ago, that I’ve hesitated on sharing for a while because, well, poetry is a raw nerve for me, and I also don’t consider myself good at it. But here it is.

Days before he left me I turned down his cigarette.
He joked he was corrupting me, and reached to hand me one, pre-rolled, ready for me. He always rolled his own cigarettes.
His scowl when I turned it down is etched in my memory.
That was the day he decided to leave me.

I was madly in love with him and he loved that I was.
We spent hours in his bed with arms wrapped around each other. I laid my head on his bare chest and we’d talk about everything.
At my most vulnerable he’d send out a barb and I’d withdraw my body.
His cold patience triumphed as I returned to his warmth crying and beating on his chest, demanding to know why he said such things.
He luxuriated in refusing me a response.

I remember watching him roll cigarettes while I cried.
How do I say that rolling cigarettes resurrects the worst person to touch me?
He said my name like it tasted foul on his tongue.
How can I say his tongue taints the name my parents gave me?

Calling it an abusive relationship still catches in my throat.
Saying he abused me is easy to spit out; I wish if I could say it enough the venom would pierce his veins.
Calling what we had a relationship I force through my teeth like a lie I don’t want to tell.
My skull is an echo chamber for his insistent words.
“We are nothing, we’ve always been nothing.”

I fear at every step that punishment is right around the corner. Worse than that, I worry that I’ll have deserved it unknowing.
His words within are now resounding with my voice.
I realize I am now torturing myself, long after his interest waned.
He is still sending out barbs, and I’m still returning to his warmth crying and demanding to know why. I desperately want to know why.
I will excise myself to find that the world outside his bedroom is warm.

Mara Passio

What can you receive from me?

I went to an event recently where the following question was posed:

Are you a giver or a receiver?

I was impressed with the language of the question. To discard “taker” and to replace it with “receiver” was, to me, brilliant, as it took away so much of the charged morality around the idea of “taking.”

Yet I still felt a jab of shame when I answered that I was a receiver.

Throughout the event I felt myself on the precipice of an understanding that felt huge and yet almost too much to handle. I felt so much an outsider to the experiences and anecdotes of the other individuals in the room with me, because, I eventually realized, their definition of giving and receiving wasn’t quite the same as mine was.

I’ve always viewed myself as a draining individual. I am bipolar and autistic, and I often have an intense emotional energy, which can take a toll on those around me. I am also chronically ill and often require assistance or accommodation that can be taxing, either physically to provide or emotionally to witness. I tend also to be a financial burden, as my disabilities limit the work I can do and thus my income, and so my monetary provisions are often fulfilled by my family. I try to counteract these tolls and taxes and burdens whenever possible by asking for as little as I can afford to.

This extends to things I need, such as doctors appointments and accommodations, I will push through things I shouldn’t, simply out of a desire not to burden someone else with my problems. Many of the times I’ve harmed myself in the past, it was because I felt that asking for help would be too taxing for my friends or family.

This was the level to which I understood that I resist receiving, before I entered this event. What I realized while I was there, was that I have an even stronger resistance to receiving things I want but do not, in my judgment, need.

The most glaring space in which I do this is my relationship with my boyfriend. I have, until now, refused to tell him what I want out of our relationship, opting instead to tell him that whatever makes him happy will make me happy. This has lead to a lot of frustration on both sides, as he tries to lead our relationship half-blind and I try to get my needs met without saying what they are.

So when I went to this event, I realized that the common definitions of giving and receiving were much more broad, to include both needs and wants. A child needs to be cared for and wants to be taught to sing. Providing for these two things would both be considered giving. Having them provided would both be considered receiving.

Something I also noticed was that the common definitions of giving and receiving were much less about obligation and much more about desire. Of course, there is a lot of giving and receiving that is based at least partially in obligation, for example caring for children and going to work, but rarely, it seems is it solely obligation that motivates someone’s giving. There is always desire to give.

When I reflect on this, I think, of course, when I give, I always have the desire to do so, at least in part. When I give my employer my time and energy, I do so out of, yes, obligation because I have committed to do the work and I need the money, but also out of the desire to be productive and to earn the respect of my employer. When I give my friends advice, I do so completely out of a desire to connect to them and a desire for them to be happy and healthy.

Generally the argument is that a balance between giving and receiving is ideal, and I would agree that for those who are healthy, it likely is the best choice. I consider, though, that there are those who do not have the option to give as much as they receive.

For many chronically ill and the disabled, giving as much as one receives is an inconceivable task. Even if one pares down what one receives to the bare minimum, as I attempted to do so, it may yet be impossible, and due to that reduction, one may not have the energy to provide anything to anyone else, regardless of desire.

I would argue that for the chronically ill, a different type of balance must be struck. It is the kind of balance between one’s own quality of life and the quality of life of one’s loved ones. A chronically ill person still has the right to want things, to have passions and interests. Often this is forgotten. Chronically ill individuals are so often viewed as taking up so much energy already that they shouldn’t get to take up more energy doing frivolous things. But they have every right to do things that are just fun or interesting or exciting.  However, their right to these things does not reach any further than their loved ones rights to those same things. I am not advocating that a caretaker give up all of their interests in order to accommodate a chronically ill person’s every fleeting passion.

I found myself, as a disabled person, forgetting sometimes that I am a person. With all the taxes and tolls and burdens I place on others, I started to see myself as simply a weight to be carried. Because I refused to ask for things I wanted, I never had enjoyable experiences, only survivable ones. And I never had the opportunity to have positive shared experiences with where others offered something generous to me. I lost track of who I was, and how I related to others.

I also lost track of the fact that I do, in fact, give. I may not give as much as an abled person does, but I do give what I can, when I can, and joyfully. I do not hoard my resources, receive only to never give any away. I can be a giver, too.

I am still trying to find the balance in my life, between asking for what I need and for what I want, and for giving enough in return. I am still terrified of asking. I am still learning to advocate for myself as a disabled person, to say that I deserve more than survival. I deserve joy. We all deserve joy.

Mara Passio

What it feels like to be a paperweight

I remember the first time I used the word fat in front of my mother.

I was talking about a Pocahontas doll that I wanted. It was very tall and sturdily built. I was under the impression fat meant, well, large, in the general sense. I had been called fat before, but I was large in the general sense, I was both very tall and very wide for my age.

My mother immediately shushed me, and instructed me never to use that word again. That was the day I learned that fat was a dirty word.

I don’t remember learning that I was fat. It was as if I had been fat for as long as I had known who I was. Fat was me as much as I was fat. It meant very little to me until I learned fat was a dirty word.

As a young child, my name being associated with a fast food restaurant did me no favors, as far as fat jokes and tormenting go. My parents taught me fairly quickly to let other children’s cruelty roll off of me, and by the time I entered middle school the bullies had mostly lost interest in me. But the word fat followed me.

One of my first days of sixth grade, as I sat with my friends, the school bully ran up to me full speed and spat, “Do you know how fat you are?” By this time this was an old trick, just a new bully. I just smiled and said, “Yep!” I remember the look of shock and confusion on her face. After a moment, her attack posture faded and she just walked away, humiliated. She didn’t bother me again.

In eighth grade, I started starving myself. I would pretend to eat breakfast, then I would buy a lunch for a friend who couldn’t afford one, so my parents wouldn’t get suspicious about my lunch money. Dinner was a family event, so I had to eat something, but I minimized my food intake as much as possible. I started losing weight rapidly. This lasted five months and in he end I lost eighty pounds. I stopped when I went on a trip where every meal was in a group setting and I literally had to eat every meal of the day.

Starving myself was not about weight primarily, it was about the unusually extreme levels of stress I was under and my developing obsessive compulsive disorder. But what I learned along the way was that people are nicer to you when you’re thinner. People smile at you who before avoided eye contact. Random people approached me to congratulate me on my weight loss, who had before never spoken to me. I remembered that.

Over the next four years of high school, I slowly gained back the eighty pounds I had lost in those five months, and kept gaining. I was active, participating both in mandatory physical education and in my chosen sport, marching band, despite my asthma and back pain. I remember that every school year I was terrified that I wouldn’t fit into my assigned concert dress that I had been sized for in the first days of class. I always managed to fit, but just barely. I was self conscious, but didn’t talk about it or really acknowledge it, and everyone else just kind of pretended they didn’t notice.

Soon after I entered college, I discovered the body-positive and fat-positive communities and it was like a light went on. I felt suddenly like a weight had been lifted off me. I followed dozens of blogs and filled my days with images of beautiful fat people. I remember one in particular, featuring fat people and celebrating big bellies from that “unflattering” profile angle, called fat from the side I submitted a photograph of myself to that blog, eventually.

The effect of this community was transformative. I bought clothes that I liked instead of clothes that hid my body away. I started taking nude photographs of myself. I had started as someone who was, if not ashamed of my body, at least mildly embarrassed that my body inconvenienced other people. Within a couple years I was rocking my fat, hairy body, belly out. My presence practically shouted, I deserve to take up space.

I have remained proudly fat and proudly body positive ever since then, discovering new aspects of it through chronic illness and injury, and continued weight gain, finally plateauing at four hundred pounds.

Now I am coming to the next step in my journey of body positivity. I am in the process of getting approved for bariatric surgery.

I love the way my body looks. I love the way it looks in clothes (and without) and I love the way my tattoos look on it and I love the way that I take up space. I am not doing this because I want to look different.

At first I thought, as many do, that getting weight loss surgery is an intrinsically anti-body positive decision. That it is just a way to erase or eliminate fat bodies, primarily through shame. I have been just as barraged by the toxic ads for fad diets and weight loss surgery where the woman jumps into the pair of jeans six times her size and says “look at how far I’ve come!” as if her former fat self was some shameful past that she’s overcome. I promised myself I’d never be that person. And I won’t. What I view as shameful about my past is how people treated me because I was fat.

But here’s the reality: Being fat is making me sick. I have prediabetes, sleep apnea, osteoarthritis, and acid reflux, just to touch the iceberg. My quality of life has slowly decayed to the point that I have, at points, considered suicide due to overwhelming chronic illness.

I whole-heartedly agree with the argument that everyone has the right to be fat and sick. I would never force weight loss surgery on someone who did not want it. What I have grappled with is, can I be body positive and yet choose to be less fat?

It took me a long time to acknowledge to myself that I can be fat positive without keeping my own fat. Because being fat-positive isn’t about forcing people to be fat. It’s about giving fat people back their autonomy over their own bodies. And I have mine. I am making a choice about my own body, based not on what society tells me I should do, but on what my body is telling me it needs. I am choosing.

And to be completely realistic, I’m not going to stop being fat. I will almost definitely shop in the plus size section for the rest of my life, and I’ll have hips and belly to show for it. But I’ll be healthier and happier and fat, just less fat than I am now. And I’ll still need the body positive movement. I’ll still need the fat-positive movement. I’ll probably need them more than ever as I adjust to what it’s like to have a body that feels and works differently, that I have to calibrate to and reclaim as it changes.

Being fat positive is also about making a difference. It is about insisting that fat bodies are just as legitimate as any other kind of body. And that the people who have these bodies should be treated with dignity and respect. We need to be teaching our children that the fat kid is just as likable and funny and interesting as any other kid, and we all need to learn that it’s not cause for celebration when someone loses an astonishing amount of weight suddenly for no apparent reason. Whether I am four hundred pounds or two hundred, I will always be working on sending these messages. Even if I don’t take up as much space physically, I will take up just as much space with my voice.

In the end, it is body positive to show love to your body. I love my body enough that I want to stay in it a long time. I want to run around with children with this body. I want to possibly give birth to children with this body. I want to go for long walks in the moonlight with my most beloved in this body. I want to wake up in this body one day and feel no pain.

And I believe I can. I need to make this choice first. For me.

Mara Passio

When she has been hurt over again without committing a sin

Or: Tackling the “Repeat Victim” Phenomenon

How do we as a community, as leadership, as friends, and as acquaintances approach those who exhibit extraordinary risk-taking behavior and self-disregard?

I’ve been hesitant to write on this topic, as it is a sensitive subject for many, including myself. I feel like my insight is something that is important and valuable however, so I’m going to take the time to write a few thoughts.

I was at a convention a few years ago and I went to a class where the presenter introduced the concept of “repeat victims” as a counter-point to “repeat offenders.” The “repeat victim” was portrayed as someone who sought out, consciously or unconsciously, situations in which they would be abused or assaulted. Now, I will be transparent and say that I left this class about ten minutes into it, as I found it completely repulsive. I do not know what the content of the class was primarily about. I do not even remember what the title of the class was or who taught it. It’s not really important. What’s important to me is that I remembered this concept of the repeat victim. It stayed with me, haunted me, throughout my time in the kink scene, until I ultimately left. What’s important is that my friend, who was somewhat of a mentor to me in the scene, told me afterwards that he saw me leave and thought, “Now that’s a mistake, because if anyone needs to be hearing this lecture, it’s her.”

I was a repeat victim.

Let me expand upon that a little:

  • When I was seven, an older girl sexually abused me, which continued for about three years.
  • At sixteen, I was raped after getting wasted at a party where I knew almost no one.
  • When I was twenty, my first boyfriend told me I wasn’t allowed to have sex toys because it was cheating, despite the fact that he was “poly” and had another girlfriend; he made me bring him my sex toys, hundreds of dollars worth, so he could make sure they were thrown in the trash.
  • My next boyfriend raped me in my sleep several times, and my therapist at the time said it was normal for boyfriends to instigate sex while their girlfriend was asleep.
  • My first night in the scene, I had the inside of my brand new nipple piercing burned so badly that my top said he “smelled burning flesh” and it ultimately rejected. I had specifically told him during negotiation not to touch my new nipple piercings.
  • During a flogging, in which I had specified that we would be doing nothing but flogging, my top groped my breast, hard enough to bruise, and kissed me.
  • I received a back rub from a man at a club, and established that no play would happen after that. He then proceeded to grope me.
  • I was gaslighted for nine months by someone I was very close to.
  • I was raped by a girlfriend.

Now there are varying levels of intent involved in some of these anecdotes. For example, the man who gaslighted me for nine months understood exactly what he was doing, from before he started to after he finished. I consider him to have done something truly horrifying, and intentionally so. However, it is entirely likely that the men who groped me were playing fast and loose with consent, without preemptively considering whether or not they might be causing a violation.

The problem was that, from the age of seven, I was taught that what I wanted and didn’t want was not important. That was reiterated throughout my life, and I never really had an opportunity to learn otherwise. By the time I reached the scene, I was hurtling forward seeking pain without much consideration for safety, rolling with the punches as well as I could, and getting knocked down over and over and getting right back up, as I was so used to doing. It was my reality.

But more than that, I was determined to maintain my reality. I sought out risky situations, disregarded red flags, and refused to educate myself on how to protect myself from future injury. When injury did happen, I would inevitably say that I was entirely faultless, and that it’s the entire responsibility of offender not to offend. Honestly, the biggest problem with that attitude was that I kept getting hurt. I kept finding out who the people were who would bend or break the rules by diving headfirst into the most extreme situations with them and then being unprepared when they didn’t turn out the way I wanted them to.

I didn’t completely have my head in the clouds during this time, of course. I considered myself an edge player, and I told people who’d talk to me about my play style that I did not recommend they style their play after mine. I considered myself to be a practitioner of risk aware consensual kink, and I believed I had accepted the risks involved in pick up play and high-risk play. But I hadn’t, not really.  Because eventually everyone will make a  mistake, forget something, or bend the rules, especially in pickup play, and I wasn’t prepared to deal with that possibility.

A bottom has a responsibility to be proactive in maintaining their own safety, including preparing for such possibilities, just as a top has a responsibility to maintain consistent consent. These two things do not counteract each other. I am interested in the practical aspects of protecting oneself without detracting from the moral obligation tops have to value bottoms’ consent. When something does goes wrong, it’s entirely likely both or neither are responsible. Acknowledging that allows for a lot more conversation about how to move forward.

How did I eventually move forward, and cease to be a repeat victim? Well, I suffered a knee injury severe enough that I was wheelchair bound and thus expelled unceremoniously from the scene without so much as a goodbye. Oh, I clung to it as hard as I could for as long as I could, but eventually I let my grip go and I was free of the scene for over a year, only returning when I felt I was absolutely ready, physically, mentally, and emotionally.

During that time, I was forced to face not only mental health issues, but also physical health issues that had for a long time gone untreated, and had compounded upon each other. I also was faced with the fact that, outside of sexuality, I didn’t have a whole lot going for me. Only after I got my physical health, especially my neurological issues, under control was I able to face what until then I had been too ashamed to admit, even to myself: I was a repeat victim.

I had read The Gift of Fear at the suggestion of my boyfriend at the very early stages of my recovery. When I finally was ready to admit that I was a repeat victim, I returned to this book and faced down some of the things I had learned there, and instead of just accepting what was in this book as information, I instead worked on how to apply it to my life. I sometimes now come across as jaded or cynical about others’ motivations due to this, but I find it truly useful to recognize when and why to trust and distrust others’ motivations.

In addition, I spent a lot of time just doing shit. Reading, writing, making art, talking with friends, going to concerts and events, and essentially, becoming a better-rounded human being, and making the decision to do these things on my own. This I think, more than anything else, is what changed me from being a repeat victim. It may seem silly, but developing a sense of self outside of one singular community, and learning to define oneself independently is essential to learning how to self-advocate.

My question becomes then, what does one do when you suspect someone you care about is a repeat victim?

I consider classes such as the one I went to, but how are we to keep them from leaving, as I did? And even if they did stay, there is a good chance that they would simply hear the information and not apply it, as I had with other classes on negotiation. Are we simply to shut these people out of the scene for their own good? I don’t know if that would be effective either, or if it would just lead them to riskier behaviors elsewhere, after feeling rejected by one of the few communities that might accept them. Is intervention the way to go? Or would an intervention just cause defensiveness and anger?

I don’t have answers for these questions, and I welcome the opinions of anyone who has helped such people before. It seems to me that, as with many things, change is only possible when one recognizes there is a problem. However, I question if there is a way to push someone to see that there is a problem when they are otherwise unwilling.

I request that all comments be made with compassion; any comments made with the intention of cruelty or flippancy will be deleted. I also request that comments be focused towards the topic of how we as a community, as leadership, as friends, and as acquaintances can approach those for whom we are concerned regarding extraordinary risk taking behavior.

Mara Passio

You’ll be thinking of me

Today, a close friend of mine made a post about a comment I made to her that really made an impact, and I thought I’d write a bit more about it at length.

What I had mentioned to her was a concept called forced intimacy. This is a type of manipulation where an acquaintance shares very intimate information with another person in order to create a false sense of closeness, usually soon after meeting. After sharing said information, the acquaintance then proceeds to expect said closeness to be reciprocated, either with personal information shared or with emotional support from the other party.

These situations usually feel uncomfortable for the individual being manipulated, as they feel that they have not established this intimacy through the time and effort that usually is required for that level of sharing/support/etc. and yet they feel guilt because they now feel obligated to respond by the other person’s vulnerability. This is exactly how the person who overshares wants them to feel. What then proceeds from such relationships is often a highly intense relationship that is not based on trust or common bond, but rather on heightened emotions, requiring every interaction to have high intensity in order to be maintained.

I’ll give an example of an experience that I went through recently, where I encountered forced intimacy:

I went to a support group for one of my disabilities, and afterwards, an individual caught up with me afterwards, alone, and started chatting with me about some things I had said in said support group, including the fact that I am autistic and bipolar. They then proceeded to tell me at length about how they had supported a past partner through grad school, who then proceeded to leave them after graduation. They told me about how this partner had bipolar disorder, and told me at length about the partner’s mental health issues. At several points I tried to cut the conversation short, asked no questions, and only gave noncommittal responses.

Eventually this person, after sharing with me for over an hour, switched the conversation over to attempting to extract information from me, about my dating life, about my diagnoses, about my treatment, etc. At this point, I did manage to extract myself, but this person did follow me and continued talking at me until I reached my car, at which point I finally made my escape.

Now, I had done, to my knowledge, nothing to indicate that I had any interest in having a conversation with this person besides perhaps a polite smile and nod, and had not directly spoken to them during the meeting. They had likely chosen me because I was new, and thus likely looking for connections.

Now, let me be clear, I have no idea whether this person did these things understanding what they were doing, or whether they were behaving manipulatively out of habit, as so many of us do. Many people, especially those with mental health issues, behave in manipulative ways in order to get the support they need because they have learned that is the only way that they can acquire it (at least in the form they want, which may be via friends, and not therapists).

I am by no means saying that all manipulators are people who are social puppeteers who know exactly what they are doing when they are doing it and have some big end game in mind; in fact, I would say the majority of manipulators are the exact opposite of this. I would say most manipulators know what they want for the next few steps; they know how to get from Point A to Point B. But this sort of manipulation is still unhealthy at best and abusive at worst.

Becoming aware of manipulative behaviors is an incredibly eye-opening experience, and coming to understand that we all, in fact, behave manipulatively at points has motivated me to become a more genuine person. As much as I may seem to others to be mistrusting or cynical, I believe that learning to see manipulation as it is and to learn not to respond to it, and, in fact, to reject and avoid it, will not only improve my quality of life, but will encourage others to learn to behave in ways that are less manipulative and more genuine in order to get what they want from me.

Mara Passio

Morning is dim with another day’s tears

Hey everyone.

I want to talk to you today, as an autistic person, about Autism Speaks. Specifically, why I would request you give no support to them, and that you do not “light it up blue.” I will provide multiple links, mainly from the Autistic Self Advocacy Network, which I view as counterpoint in terms of nonprofits. If you take nothing else from this, please look into the Autistic Self Advocacy Network and see what they are doing for and with autistic individuals.

What I would like to start with, is that Autism Speaks is hyper-focused on “preventing” autism. I take issue with this, not only as an autistic person, but as a person who is generally anti-eugenics. Autism Speaks puts the majority of their research funds towards causation and prevention, including, potentially, prenatal testing.(1) In addition, they support “behavioral health treatments” (2) which generally means Applied Behavior Analysis, or ABA. This type of treatment has been anecdotally shown to cause trauma in many autistic individuals, as the basic function of ABA is to punish “autistic” behaviors and reward “neurotypical” behaviors. An example of this would be to punish a child for hand-flapping or stimming, which is a natural behavioral response to overstimulation or strong emotion, in autistics most commonly, but it occurs in non-autistics as well.

Autism Speaks, in addition, refused for 10 years, despite intense pressure, to appoint any autistic individuals to their Board of Directors.(3) They have very recently caved to the pressure and appointed two autistic individuals, but this does not by far undo the damage they have done, or continue to do, by presenting autistic individuals as burdens on society.(1,3)

I have received the response before that I am a “high functioning” autistic, and therefore do not speak for “low functioning” autistics. I would like first to assure you that, if functioning levels were a useful conversation to have (which they are not), I would by no means be considered “high functioning.” I get sensory overload; I get meltdowns where I beat myself with my fists; I sometimes go non-verbal. I am all of the things that make someone a “low functioning” autistic. Second, I would like to ask you, is a “high functioning” autistic less appropriate to speak for “low functioning” autistics than someone not autistic? I see a failure in logic here. Caretakers understand what it is like to be a caretaker. Not what it is like to be the one cared for. Please do not be so presumptuous as to think because you know us or because you have studied us that you know what it is like to be us.

Do listen to autistics.
Do not support Autism Speaks
Do not light it up blue.

(1) http://autisticadvocacy.org/wp-content/uploads/2016/03/AutismSpeaksFlyer_color_2016.pdf
(2) https://www.autismspeaks.org/advocacy/about-us
(3) http://autisticadvocacy.org/2015/12/statement-on-autism-speaks-board-appointments/

Mara Passio

Where do you get dreams like this?

It is the day after Easter Sunday and I’m thinking about redemption.

I’m not a religious person by nature. Something about this holiday struck a chord with me.

I believe in redemption. That may seem like a strange thing to say, like redemption is a matter of faith. But for me, it is.

I am reading a series of novels right now by Stephen R Donaldson called The Chronicles of Thomas Covenant, which is a story of redemption. It features a man who has been plagued – but not overcome – with leprosy. He is a man who was once a beautiful human, turned wretched – physically, emotionally, and spiritually – by illness. He lost everything to leprosy, first in the physical realm – his wife, his child, any social ties – and then he pushed himself to become almost mechanical, nearly sub-human, in order to survive.

Early in the first book of this series, Lord Foul’s Bane, Thomas Covenant commits an act so atrocious that I – as a reader – was not sure I could forgive him. I’m still not sure I have. And yet, somehow, the characters in the book maintain faith that there is good within him. They hold not only to their precept of peace, but the majority of them somehow forgive him.

I have not finished the series, but I believe Covenant will be redeemed.

I’m afraid I am on a similar journey to Covenant. Although there is no singular event to pinpoint as the height of my instability and grotesque illness, I have definitely been near where Covenant was. For Covenant, he was not dead, but on the brink of dying, and fighting to stay on life’s edge of death. For myself, I was not dead, but on the brink of living, and unsure what side of death I wanted to be on. We both made ourselves sub-human, for a time. And in becoming sub-human, we immersed ourselves in self-loathing.

My story of redemption has sat squarely in the realm of allowing myself to be vulnerable, uncomfortable, and honest. A big part of this, I realize, is accepting that, while I have a unique set of life experiences, this does not mean others cannot engage with me as a whole person. I do not have to pare down myself into bite-size chunks and only dole out the ones that I think people want, hoarding the rest to go rotten.

I struggle to write on the topic of the redemption of others, as I have much more fear that it may not be universal, redemption. I fear that redemption is not available to all. It is a fear that sits deep in my chest. But in the end, I choose to have faith. I have faith in redemption. I guess, in the end, I have faith in myself. In humanity. In the world.

Mara Passio