What being set up to fail looks and feels like

A friend of mine asked me a to write about how I used to be set up to fail as a kid – so I’ve decided to oblige, mainly because I have it on good authority that this could help others to recognize and process the same thing.

Setting someone up to fail is a tactic used by many bullies in authority – teachers who bully students, bosses bullying employees, etc. It takes many forms, but fundamentally, it is what is likely happening when it feels like you’re constantly put in a situation where success isn’t just very hard, it’s actually impossible. Here’s a few ways in which I have experience with this odious brand of bullying, in no particular order:

• In school: If the student has missed class owing to illness, injury, medical appointment or other thing outside the student’s control, the teacher refuses to hand out make-up assignments or to provide the student with the missed homework, even though the student will lose marks if the assignments or homework are not completed. Sometimes, the teacher may foist the blame back on the student, claiming that it is the student’s responsibility to get the work, e.g. from another student.
• At work or home: The employee is expected to do tasks for which they have received inadequate or no training. Then, when they fail at the tasks, they are penalized with a poor work review. Example: I was once asked to strip and wax a floor – despite never having been trained on how to do either. When I refused (as is my right under local legislation – works are free to refuse hazardous tasks they’ve not been trained to do), my boss threatened to fire me, did give me a written warning for a bad attitude, but provided me with the training. As a kid, I’d run into this often from my parents, who would expect me to do tasks (e.g., defrost and clean out the freezer) without any knowledge or instruction on how.
• Anywhere: The victim is given a task, but insufficient resources (time, supplies, etc) to get it done. The victim is then penalized for an incomplete or poorly-completed task. Example: I was once tasked with cleaning a building. Problem: The entire building had been so severely neglected by the previous cleaner that the floors were brown. Except the tiles were white. That was how much dirt had accumulated on the floor. It was simply not possible to get an entire building which had been that badly neglected clean in a single day of work – after which the boss wrote me up because even though I’d managed to get 2/3 of the floors back to the white it was supposed to be and all the inhabitants of the building were praising me as “so much better than the last cleaner!” and telling me it was amazing how fast I was turning the floors around, I apparently was obviously loafing off.
• Anywhere: The authority figure badmouths you to those around, saying that you “Don’t want to succeed,” or that you’re “just a bad egg” or what have you. They do this to cover up the fact that they’re setting you up to fail in no-win situations.
• Anywhere: The person in charge keeps changing the rules, without informing the victim, such that the victim is always getting in trouble for breaking rules they don’t know exist. Example: My boss at one job would change his mind every week about how much supporting info I needed with me in a meeting – one time yelling at me for not having brought the entire CRC handbook of Chemistry and Physics, and all of my literature papers I’d researched (a stack about a meter high, by the way) and accusing me of not having done the research and just being lazy, and the next week, when I obliged, yelled at me for having brought too much, “Stop being ridiculous. We all know you’re working hard at this, you don’t need to make a martyr of yourself.” This can also happen at home with an abusive parent.
• At work or school: The victim is held to an unfair standard. The abuser may pretend this is a positive thing, to ensure the victim is “adequately challenged,” but the victim is never given a standard to which they can actually achieve. In the case above: I was expected to anticipate everything my boss might want to see for supporting info and bring all of that but nothing else. In school: My teacher would stop grading my work sheets after the first wrong answer and mark as if everything else as wrong – supposedly to teach me attention to detail. None of the other students had to get everything right. This meant if I made one mistake on a work sheet, I might get a 5% or a 95% depending on whether it was the second or the last question I messed up on.
• Anywhere: The abuser gives the victim a goal, and then sabotages the victim’s attempts to achieve said goal. At home this might look like promising a small child a reward if they manage all day without yelling, and then spending all day needling them and trying to provoke an angry reaction. At work, this might look like assigning a task and then undoing the victim’s work behind them. At school, it might look like promising a reward if they get a certain mark on the test, and then changing the weighting of the questions to stack the deck against the victim being able to achieve that mark (e.g., if the teacher knows the student is bad at memorizing dates, suddenly the questions about what dates important things happened on are worth twice as much).

Pretty much any instance of being set up to fail looks like some permutation of the situation above. Emotionally, it is at first very frustrating. You’re doing your best, and it doesn’t seem like you’re making any headway. Over time, you might suss out that you’re being treated unfairly, and then you feel angry in addition to frustrated. Eventually, this leads in to feeling trapped, anxious, and/or hopeless as you know you’re stuck in a no-win situation – which can very easily feed into other mental illnesses that may or may not be at play, and can cause the development of new mental illnesses if you don’t have any yet. Quickly, it erodes your self-confidence and motivation – what’s the point in trying if you know the situation is engineered for your failure, anyway?

As for the solution, I can say this: The only solution I’ve ever found that works is a change of environment: Change the job, change the class, take your pick. Just get the victim away from the abuser, so the abuser doesn’t have free reign to engineer their downfall anymore.

Undoing the damage from being set up to fail is a lot harder. I am still working on it, I admit, but for me what helped was to slowly rebuild my confidence as someone who was competent at achieving things. Admittedly, I’m still working through it, but achieving incremental challenges has done wonders since then for my confidence in my abilities.

Making peace with my (social) anxiety

I got a promotion recently, and to put it bluntly the transition has been terrifying.

I mean that in the literal sense: I have spent most of my days, for the duration of the transition period thus far, in a state of anxiety. Like, I have lost my appetite to such a degree that I’ve lost 10 pounds in two months, my mouth often feels dry, and if I don’t clasp my hands to hide it, others notice that I am trembling much of the time.

The reason? My new job requires learning a whoooole bunch of social skills. New social skills which I have no basis of experience in or foundation to build off.

To be clear: my boss knows that I have social awkwardness and anxiety. And when the opportunity came up, he made it very clear that I did not have to take it, but that he was offering it to me because he genuinely thought I could do well at it, given the time to gain the social skills I need. He told me he knew it might be hard for me, and that I was a better judge of whether I was ready to take this on than him, and that if I changed my mind there was no judgement coming from him and that there is another position I could move laterally into if this one doesn’t work out. So he and I both went into this with our eyes open, and there was no pressure on me to take the job.

And I took it anyway, because the fun part of the job is worth the anxiety of a transition and new social situations. But the side effect is that I’ve been having a crash course in actually coping with my social anxiety lately.

Previously, my strategy for “dealing” with my social anxiety was not to deal at all: I avoided. Don’t do new things, don’t meet new people, don’t get into unfamiliar situations. And that worked well for a long time. But I was getting to a point where my life felt stale. I was frustrated with where I was and where I was going. I needed to change.

Needing the change is a big part of why I took a job with my current employer. Wanting to see where the change could take me is a big part of why I accepted the promotion (the other part, to be frank, is simply ambition: I do not want to work the same job forever. I want to make it to a leadership position in my industry. In the past year, I’ve decided that I don’t think my ambition is a shameful thing, and that I will be frank and forthright about it to all who ask, and those who don’t like an ambitious woman can go pound sand. So yes, I will say it frankly: within a decade, I want a job like my boss’s. Not necessarily his job, but I want to be leading a team in a tech field).

I knew going ahead that I was in for a scary few months as I learned the ropes of my new job. I went in with my eyes open, fully expecting to feel varying degrees of anxiety and fear for the six months or so after the transition happened (what I had been told by others is the time period it generally takes to get used to this sort of role). Even still, I wasn’t really expecting how tiring the transition would be.

My coping strategies include a couple of things: I am trying to eat well and exercise regularly, as well as keep my chronic illness in check. I am doing these because I deal better with stress when I am feeling well. I am also making time for self-care and relaxation because one can only be in performance mode so much of the day before you start to decompensate. I am planning my days strategically, so as to make the best of my mental resources – in the morning, I am more in the mood for quiet work, so I focus on stuff that does not involve as much face-to-face. In the afternoons, I am more social, and so I try to schedule all important appointments and meetings then.

But mostly, I have made a conscious shift in my attitude toward my anxiety. It’s hard to explain, but I treat it less like a natural hazard to be avoided at all costs and more like the wind in my head: It is there. I feel it. I accept that it is there… but I keep doing what needs to be done anyway. It flows through me and out, and does not weaken my resolve to move forward, even if it does motivate me to carefully examine my situation and make sure I am not making an obvious blunder.

This is much easier said than done. And honestly, I have no idea how I was able to make the shift in my attitude about anxiety, but I have. No longer am I living in fear of my fear – it still exists, and I accept that it’s there, but it doesn’t dictate what I do anymore. For now, it seems that anxiety and I have buried the hatchet. It feels like I’ve made peace with it.

I wish I could describe what it was that made the shift in my mindset happen, but I can’t. Regardless, the shift has allowed me to move forward with my life and career goals, and I couldn’t be more grateful.

My eczema routine

Because write about stuff currently on my mind, I’m going to write a bit about eczema. Because I have it and it’s kind of causing sensory hell at the moment.

Eczema is an atopic condition related to allergies. Together with asthma and allergies, it forms the atopic triad. Like my asthma and allergies, I’ve been dealing with eczema pretty much my whole life, though some years are worse than others, and winters are usually worse than summers.

This winter is shaping up to be my worst in over a decade, if the past week is any sign of what’s to come. My arms and legs are covered in an itchy, red, bumpy and angry rash which itches so intensely it almost burns. The phrase “sensory hell” comes to mind. That said, I’m fortunate. Generally my eczema can be managed through OTC medication and regular moisturizing, with only occasionally needing a prescription-strength med if OTC stuff isn’t cutting it. Some people are not so lucky.

So I figured I’d make a post about my winter eczema routine where I’ll share what works for me and others can share what works for them.

Hygiene

• Cut showers down to once every two days.  Daily showers make my eczema angry. Exception if I’m exercising regularly because I sweat too much not to shower after an exercise session.
• Make sure all showers are barely lukewarm. Hot and cold showers alike anger my eczema.
• Apply moisturizer every time I wash my hands.

Nutrition

• Eat healthy foods
• Cut down on junk food
• Cut out processed foods entirely (preservatives tend to set off my eczema, so if I’m having a flareup, I cut them out)
• Try to eat foods low in sulphites and nitrites (recommended by my allergist because for some people sulphites and nitrites aggravate eczema – nitrites don’t seem to bug me but sulphites definitely do)
• Drink lots of water.

Morning

• Immediately upon waking up or immediately after a shower if it’s a shower day: apply moisturizer cream. My favorite is glaxal base, because it is effective, unscented (scented moisturizers set off my eczema something fierce. Every few years I think I can get away with a cheaper, scented moisturizer  and try it once and end up in tears because my skin feels like it’s on fire and chuck it out and vow never to do it again… onnnly to forget about it two or three years later and give it another go), and cheap as far as unscented moisturizers go. I can get a 700g tub at my local pharmacy for $20.
• Apply moisturizer for my face (glaxal base makes me get acne so I have a separate one I use for my face)
• About a half hour later: Apply hydrocortisone cream to bad spots.
• 20 minutes before leaving: apply sunscreen of SPF 60 (ever had an eczema flareup over a sunburn? NOT fun. Sunscreen is important on the skin cancer prevention front anyway, but even lacking that,  sunburn and eczema don’t play nice)
• At morning break, reapply sunscreen

Mid-day:

• Stop in a bathroom around noon and reapply moisturizer to hands, arms, and legs.
• Apply hydrocortizone cream to any bad spots.
• Reapply sunscreen at lunch, and again at around 2-3PM

After work/Evening:

• Before leaving work, reapply sunscreen
• Immediately on getting home/immediately before evening classes or evening work shift as applicable, reapply moisturizer to hands, arms and legs
• Apply hydrocortizone cream to bad spots
• Since my rash gets worse in evenings and night-time, if necessary apply lidocane cream to relieve itching. I usually only do this if it’s making me frantic, because the lidocaine irritates my skin a bit, but not applying it is sometimes not an option.
• If necessary, wrap really bad spots in gauze dressings so that I can’t damage them through scratching too much.

Night time

• Reapply moisturizer to hands, arms and legs. Moisturize face.
• Apply hydrocortizone cream to bad spots
• Re-apply lidocaine if needed.
• If needed, reapply gauze dressings
• If really bad, take a Benadryl to help to get to sleep.

If I’m really, really bad, I will also use topical Benadryl cream. If I’m doing okay, sometimes I don’t need the hydrocortizone at all.

All-told, taking care of eczema generally takes an hour or so out of my day. It’s annoying, but definitely worth it on the stress management front – there are few sensations I find worse than itching.

Ten anti-skills I learned from being bullied

So, there’s a thing out there causing a shitstorm.

I need to write about it. Need to.

1. How to smile as your insides scream and you bite the inside of your cheek bloody to keep from running out the door. Bullied kid meant scared kid. Always, always scared. Always. Still, as an adult, always scared. Often a few heartbeats away from running screaming out the room. Only thing keeping it in check? Bigger fear of what will happen if I do. But can’t show you’re scared – bullies are to fear what sharks are to blood. So smile, smile, smile. And if nice fails, act tough and apathetic. Maybe you’ll even fool yourself. And then it’s your fault when adults around you refuse to see what’s happening. “You should be an actor, you’re so good at pretending nothing’s wrong!” they’ll say, as if it’s a compliment. As if they didn’t make you learn to pretend nothing’s wrong. As if it’s your fault you had to learn that skill to survive. As if it’s your fault they refuse to see past the facade they forced on you in the first place.
2. How to shut down and lose words to avoid screaming exactly what you think about someone at them… because if you do, then you’ll get the shit kicked out of you, and then the school will suspend you for instigating, and then you’ll go home and catch hell from your parents, too, and then they’ll all wonder why you throw up at the thought of going back, and make fun of how school isn’t anything to cry over.
3. How to accept bad advice with a smile and an I’ll try that next time. How to try something you know won’t work just to satisfy someone who’s convinced it will.
4. How to restrain yourself from blowing up at them when they tell you that you’re just not trying hard enough, and maybe you just want the attention. How to hurt yourself to prevent yourself from hurting someone else.
5. How to find a place where you can fall apart safely.
6. How to hate yourself, your life, the world and everyone and everything in it. But mostly yourself. How to use that hate to power you, how to make hate into a lifeline which keeps you from drowning.
7. How to bury your emotion in a superhuman workload. Can’t feel if I’m too exhausted to think. Stab of adrenaline just lets me finish the next assignment or shift.
8. How to act happy when all that is going on in your brain… because anything less is “letting them win” and “being a coward” and “being selfish” and not being resilient enough. Also how to know deep in your hear that the happy mask is walking a tight rope made of knives in a heavy crosswind, if you slip, you fall, and if you don’t, you bleed. And spectators will call it your fault whichever way it turns out.
9. To not trust anyone. Ever. To assume malice before incompetence, because a pattern of willful incompetence often hides malice, and because people who have a vested interest in not having to do anything would have you believe that ten people who have a combined work experience of more than twice your grandmother’s age are all so staggeringly incompetent that they can’t see a kid getting beaten up right in front of them. Because nobody is that incompetent. Because often the ones bending themselves into pretzels to excuse malice as “innocent” incompetence are the most malevolent.
10. To isolate before you can be isolated. Because if it’s self-imposed it doesn’t hurt as bad. Because you can’t be betrayed by stuffed animals and books and the walls of an empty room.

Tell me, O Great and All Knowing ABA Person: Where is the “perks” in this? Tell me.

Maybe one of your “perks” can make my brain stop screaming. No?

I didn’t think so.

I am not a therapist

This is inspired in part by something going on in real life, that I will not talk in detail about here, because it’s not my thing to talk about, though it is affecting me in a way. It will be vague – but unless you know me in meatspace, it is certainly not about you. It is vague out of a desire to respect someone’s privacy, not out of any desire for passive-aggressive sniping.

Michael John Carly, you are wrong.

I am addressing an autistic autism parent blogger who made a post to Huffington Post a short while ago. In his post, he argues, essentially, that “both sides” of the autism debate are just as bad as each other, and that we should stop being emotional in our arguments because it’s hard to be eloquent while emotional. He commits the fallacy of the golden mean, and also severely misrepresents the autistic community.

Michael John Carly, you are wrong about us. We do not want to “minimize” the suffering of parents of autistic kids. We want them to stop using their suffering as an excuse to paint autistic people  as less-than-human.

We are not all “articulate, verbal spectrumites” – many of our major voices, such as Amelia Baggs, are not able to communicate through speech and instead communicate through AAC. I am usually able to talk, and often at length, but usually not articulately, and often not without being a walking wall of words. I monolog, is what I’m saying. Back-and-forth of typical conversation is hard for me, and the difficulty rises exponentially with the number of people I’m trying to have a back-and-forth dialog with. Writing, for me, is a far more reliable communication method than trying to string together sentences in the heat of the moment while fighting both distraction from navigating body language, manners, etc and my speech impediments.

We do not say that Autism Speaks is “complicit” in murders – and, in fact, ASAN has never, to my knowledge, taken that position. We say, instead, that their hateful rhetoric creates an environment where murders of autistic kids are inevitable – and where, when such murders are committed, more sympathy is given to the murderer than to their victim. Consider the response to the attempted murder of Isabelle Stapleton. News outlets reported this act as a “desperate act,” portraying her mother as a loving woman. Kelli Stapleton became a media darling, even getting an hour-long special on the Doctor Phil show, where most of mainstream media painted the act as Isabelle’s fault for being so difficult, not her mother’s fault for deceiving her, disabling her, and trying to kill her. In fact, the news media focused so much on sympathizing with Kelli Stapleton, that, as of this writing, a Google Search for news about “Issy Stapleton” has a 15:3 ratio in favor of stories focusing on Kelli, and not her victim. To my recollection, roughly 80% of news stories focused on sympathy for Kelli, and of the remaining 20% or so, vanishingly few focused on who Isabelle is as a person, but rather on what Kelli did. We do not say that these murders are Autism Speaks’s acts. We instead criticize them for their role creating a culture wherein it’s more acceptable to give sympathy to the committer of the worst sort of child abuse than to their child, if their child is autistic.

We do not say or argue that parents and families should be without support, as you’ve implied in your piece. That is simply wrong. Autistic people and our allies set up organizations and projects like We Are Like Your Child and Parenting Autistic Children With Love And Acceptance, to try to help those parents in a way that does not demonize and degrade their child. We do not have a problem with “support” for parents, we have a problem with supports coming at the expense of the health and wellbeing of their child.

And, yes, we do fight. We fight against anti-vax, which will make our world more dangerous and far  less healthy for everyone. We fight against portrayals of us as less-than-human, a public view that leads directly to “therapies” that have been condemned as torture, and, yes, we criticize Autism Speaks for their partnership with a place that has been condemned for committing torture, after that torture was publicly revealed. We think it’s wrong for them to partner with and support organizations that commit torture. And so should any reasonable person. This public view also leads to the false belief that autistic people don’t feel pain, and that even if we do, it doesn’t cause us harm.

Autism speaks contributes to those beliefs by describing autistic people as natural disasters, portraying us as demon-possessed, claiming that we cause marriage failure, as “missing,” as merely existing but not truly alive. Autism Speaks portrays autism – and autistic people – as a dire crisis in need of resolution at any cost. Call in the National Guard! The Army! The Navy! We have a crisis!

This cure-at-any-cost mentality is what leads to torture in the name of therapy at the Judge Rotenberg Center, to hopefully well-meaning parents forcing their children to drink bleach and have bleach enemas with Miracle Mineral Solution, and to people trying actively to chuck the single most important public health development in the history of humankind out the window because one corrupt, since struck off the medical register ex-doctor once released an extremely poorly designed case series with the implication that a vaccine may possibly cause autism.

And, yes, Michael John Carly, I will fight against people who call me a tsunami, who portray my brain configuration as a demon, who portray me as not human, who blame their relationship problems on me, who say I’m missing and not living. Because those beliefs are dangerous. Those beliefs lead directly to torturing kids in the name of “treatment” and to giving more sympathy to a person who tried to kill her child than to her child abuse victim.  And I – and any other moral and reasonable person – will fight against those things.

The autistic community is not part of the problem, here, Michael John Carly. The people who dehumanize and degrade us are.

YAY FOR MARRIAGE EQUALITY IN THE US!

I’m a day late because between my crappy ankles being crappy and getting sprained again (it happens at least twice a year for me – hypermobility fun times) and a 12 hour day at work, I was exhausted and spoonless.

But:

MARRIAGE EQUALITY PASSED 5-4 IN THE US SUPREME COURT! ALL OF MY AMERICAN FRIENDS CAN NOW MARRY THEIR PARTNERS AND ENJOY THE FULL RIGHTS AND RESPONSIBILITIES OF MARRIAGE, REGARDLESS OF THE GENDER OF THEIR BELOVED!

No longer will a person’s beloved be forced from their ICU room. No longer will LGBT couples have to fear one of them becoming homeless if the other dies. No longer will homophobic family members be able to over-rule partners and kick them out in a crisis. No longer will LGBT couples have to carry around legal documents in case of emergency, as a constant reminder of their second-class status. No longer will LGBT couples have to deal with clueless straight people saying, “Marriage isn’t that big a deal. What do you need the dress and pomp and circumstance for? Just love each other and that’s enough.” No. More.

Because marriage equality is recognized now, in the US.

Oh, happy, happy, happy day.

And a long time coming.

On the topic of the Charleston massacre

As I said on Tumblr, white people must not attempt to deny the racism of that action. White people must not scapegoat people with mental illness and refuse to take a good hard look at the culture that bred that hatred in the shooter. The Charleston massacre was not about mental illness, it was about racism and white supremacy.

Additionally, I would strongly recommend that anyone with the resources to do so donate to the families of victims and to the survivors, so that they do not have injustice compounded upon atrocity, and do not have that horrible crime ruin their finances in addition to hurting them, traumatizing them, and/or killing their loved ones.

Beyond that, this is not a time for me to be talking. Have some links to stuff written by people who should be talking at this time:

• http://www.blackyouthproject.com/2015/06/8-things-black-folk-dont-have-to-do-in-light-of-the-ame-massacre/?utm_content=buffer88cfb&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
• http://freethoughtblogs.com/blackskeptics/2015/06/18/black-atheists-condemn-white-terrorist-massacre-at-charleston-black-church/
• http://www.bet.com/news/national/2015/06/18/commentary-race-and-hypocrisy-in-the-charleston-massacre.html

A final point: If any black person wants me to signal boost anything right now or wants to use this blog as a platform in any way: leave a comment or get in touch by email (my email is ischemgeek AT gmail DOT com).

Respect the “can’t”

People with disabilities and chronic illnesses will often say we “can’t” do something when technically, we can, but not without severe consequences we’re not willing to pay. Since, in my experience as a person with chronic illness and disabilities, explaining that yes in theory I could do the thing but the cost-benefit analysis does not work out for me usually results in people trying to pressure me to do the thing despite me just explaining what it would cost, I try to shut down that line of pressure by saying “can’t” instead of “shouldn’t.”

Doing this is not dishonest. I can’t do the thing, in the sense that abled people are thinking of. I can’t just pound it out and move on to the next thing. It will take too much out of me. If I do it, my day is basically over, and maybe my next few days or weeks will be wasted in recovery.

But, abled people, when they find out what I meant by the “can’t” get outraged at it, and seem to think I’m lying about my abilities. And then my can’t backfires, because they take every can’t as a “shouldn’t.” Alternatively, abled people who fall into the “The only disability in life is a bad attitude!” camp will take every “can’t” as a “shouldn’t” just on principle. That’s when the trouble begins.

Because then they start viewing every “can’t” as an obstacle to be bulldozed over. “I can’t go to that party, there will be too much smoke.” “Oh, come on, an hour can’t hurt!” “I don’t want to have an asthma attack.” “Can’t you, like, premedicate or something? You said you do that before exercise.” “That’s different – exercise improves my asthma control. Smoke will only worsen it.” “How do you know? You might get desensitized from it. And besides, it’s only an hour.”

etc.

Any reason I give, no matter how well-evidenced, is hand-waved away dismissively, and challenged with two or more “reasons” I should do it that are often not supported by anything except they want me to do the thing.

If you do this, there are two major problems with your conduct: Firstly, you’re assuming you know more than a disabled or chronically ill person about their disability or chronic illness. Unless you’re a leading expert in the field of their illness or disability, that’s is vanishingly unlikely – most people with disabilities or chronic illnesses have to become self-taught experts on our conditions, because medical professionals often think they know a lot more than they actually do about us and we have to be on our toes to challenge bad ideas (like putting a severe asthmatic on the lowest possible dose of Flovent because when well-medicated and between flareups, my PFTs are quite a bit better than average. No, the fact that I’ve lucked into avoiding permanent lung damage so far despite a long period of brittle asthma as a kid is not a argument for reducing my med load so drastically that I’d get that permanent lung damage. It’s an argument against it).

Secondly, you are not respecting the person’s boundaries and agency. They think doing the thing is a bad idea and they don’t want to risk it. Respect that. If, frex, they’re unfamiliar with the fact that the person holding the party is getting their place cleaned and making it temporarily into a non-smoking zone for the non-smokers in the party, by all means bring that up. “Oh, there won’t be smoke there! [Host] is going to clean their carpets and wash everything down and make people smoke outside so you don’t get hit by it. Would that work, or will there still be too much smoke in the upholstry for this week?” is a fine way to bring up info. Not fine is turning that info into a guilt trip: “Oh, so I guess [Host] cleaned their carpets and washed everything down just for you for nothing, then. I’ll tell [Host] they wasted six hours. God, you’re so ungrateful.”

But lacking a situation where the PWD does not have perfect information, respect their “can’t.” You don’t know what’s going on in their body this week. Maybe their allergies are really acting up, and with [Host]’s cat, they’re guaranteed to be up all night coughing. Maybe they have arthritis which is flaring up and [Host] lives on the third floor of a place with no elevator. Maybe they’ve been up every night this week dealing with complications of their condition or disability, and really just need a good night’s sleep.

You don’t know. So respect the can’t.

Why I “interfere”

I recently read an article by an autism parent blogger who railed against autistic advocates and asked how we dared “interfere” with his parenting by protesting ABA or telling our experiences or questioning the cure narrative. I don’t want to link to that article because the person in question has shown that he has no intention of listening to an autistic person about things, and because I don’t want to invite a hoarde of anti-neurodiversity zealots to my blog. But I thought the question itself deserved explanation, so I figured I’d write something about it.

I interfere, sir, because I grew up undiagnosed. Because my parents, despite their best efforts, made mistakes in raising a child with disabilities. Because my experiences of occupational therapy and remedial training on certain skills ranged from completely useless to downright traumatic. Because I learned the most useful skills from my autistic friends, not from any social skills class or occupational therapy. Because I know I had it relatively easy compared to my peers who were diagnosed in early childhood. Because I don’t want your son to experience what I did.

I interfere because I think you, and people like you, will benefit from hearing the perspective of the receiving end of those therapies and treatments. Because I think you should know red flags of abusive treatments. Because I think that you should be thinking about risks versus benefits, and what kinds of “benefits” are benefits you actually want, and what kinds of risks you’re willing to tolerate for what kinds of benefits.

I interfere because, for me, hand-over-hand (I would like to draw a line at this point between “helping someone, with their consent, to move their hand/body through a motion so they get the feel for it,” and “hand-over-hand” as used in my therapy, which was always “grab the kid, forcibly restrain them, and then force their body to do what you want it to do, when they are actively not consenting or willing, and when they have no idea what is happening or why.” The first is something that I will do, always with consent, with kinesthetic learners. The second is something that was done to me, and it was called hand-over-hand) was uniformly traumatic. It hurt, it took away my autonomy, it was frightening, it made me helpless. I screamed and cried during hand-over-hand, not because I was being willful or defiant as my parents and teachers and therapists thought, but because I was terrified and hurting. And my parents, my teachers, my therapists – they were the ones causing the terror and pain. And they thought they were helping, but they weren’t. I interfere because what I learned from hand-over-hand was not how to do the skills they were trying to teach properly (I am 27 and I still can’t write my name in cursive or sew a button or etc, obviously their occupational therapy to try to teach me cursive and other fine-motor skills failed abysmally), but rather that my pain didn’t matter, that my fear didn’t matter, that my body was not mine, and that might makes right.

I interfere because  I remember being helpless and in others’ control, at their mercy. I remember being thought of as willful or defiant or non-compliant or bratty when I was actually scared or in pain or exhausted or just bored to literal tears after hours of monotonous tedium. I remember what it felt like to be locked in an isolation room when I couldn’t do something to others’ satisfaction. I remember what it felt like when my parents flat-out refused to believe or investigate teacher abuse of me (they refused to believe for 14 years, when a classmate of mine told them stories about what she would do to me. And then they blamed me for not telling them, just as they’d blamed me at the time for “making” her abuse me). I remember too well what it felt like when my parents accepted others’ characterizations of me as lazy, or careless, or just not wanting to succeed. I remember too well what it felt like when I was scapegoated for anything that went wrong in an interpersonal situation. And I remember too well what it felt like when other people thought it would be easier to try to restrain and yell and scream and hand-over-hand my disabilities out of me than accommodate them and create an environment in which I could thrive.

I don’t want to call all the shots in your parent-child relationship. I want you to listen to those with relevant experiences- to me, to other autistic people, etc – and to think about what you’re doing. I want you to think about the potential consequences, about what’s best for your kid, and what is a true deal-breaker for you. I want your generation to avoid making the same mistakes with your kids that my parents’ generation made with me. I want you to learn from their mistakes without having to repeat them yourself, and to make the best possible decisions for your kid. And that’s why I “interfere.”