Friends, family members and loved ones of learning disabled and mentally ill people need to have a working knowledge of what Executive Dysfunction is, and respect the fact that it is a prominent feature of that person’s psychology and life.
Executive Dysfunction is best known as a symptom of autism and ADHD, but it also features in depression, anxiety disorders schizophrenia, OCD (which by the way is also an anxiety disorder), personality disorders; etc, a whole myriad of mental illnesses and disabilities can result in executive dysfunction.
Years ago when I was like 14 and had recently learned of my autism diagnosis, I watched a youtube interview between autistic people, and an autistic woman said something along these lines:
- “Sometimes, a lightbulb will burn out, but I cannot change it. I have the physical capability to change the lightbulb, and I want to change the lightbulb, and I know I need to do it, but because of my autism I just don’t do it. So the lightbulb remains unchanged for weeks. Sometimes people have to change the lightbulb for me.”
When she said that I related so much, because constantly throughout my whole life I have wanted and needed to do things with my wanting and needing being akin to my spurring an extremely stubborn horse who refuses to move. For the first time I learned that I wasn’t just “lazy”, I had a condition that prevented me from doing things as easily as other people can, but unfortunately it took me years since then to understand that.
Imagine that you are a horserider, but your horse is entirely unwilling to move even if you want to move. You dig in your heels, you raise the reins, but the horse refuses to respond. Your wants and needs are the rider, and your executive functions (the parts of your mind responsible for getting things done) are the horse.
I think it’s incredibly dangerous for neurotypical loved ones to not understand, or be aware of, or respect executive dysfunction. Neurotypical can assume that we are just being lazy, careless, selfish or difficult, when in reality we want to do the thing but our brains prevent us from consistently and reliably doing the thing.
That misinterpretation can lead to toxic behavior and resentment on the part of the loved one, which will harm us emotionally and do us a lot of damage gradually over time.
That damage can take the form of internal self-criticism, complicating executive dysfunction even further and making it worse.
edited for easier reading!
I think about this a lot, because I have to. In my own life, as a parent who struggles with executive dysfunction and yet has to teach a child basic life skills, it’s important to know my blind spots and learn to function around them. He’s watching me and learning from my example, so I have to do my best to explain what I can’t always do, and try to do it anyway.
Executive function is such a fundamental and yet hidden trait. It is in charge of reasoning, flexibility, problem solving, planning, and execution/prioritization of necessary steps in any action.
Each task is never one task. Take changing the lightbulb – from beginning to end, it’s a series of steps that must be put in proper order:
- Notice light bulb is burnt out.
- Recognize that it can be fixed by putting in a new light bulb
- Remember where new light bulbs are stored
- Go to light bulb storage area
- Select new one
- Find stool or chair to stand on
- Take out old bulb, put in new one
- Screw in bulb
- Replace chair or stool to previous spot
- Throw away old bulb
That’s not even all of them, but it’s a good enough summary for now. There are hidden stumbling blocks in every single step.
- A burnt out bulb may go unrecognized as a problem – there’s two other bulbs in the room, it’s a little dimmer, so what? It might take all three burning out before you see it as a problem.
- Maybe you forgot where the bulbs are, because it’s been a while. Searching the house is a task you put off, because it’s messy/disorganized/big/you have other more pressing matters. The bulb can wait.
- You find the bulb storage, but you’re out of new ones. You have to shop. You’re busy, you put it off until the next time you shop, by which time you’ve forgotten you need a light bulb. Repeat cycle.
- You’ve been depressed for a while, or maybe you’re just a messy person. A stack of important documents is on the chair you’d use to stand on to get to the bulb. You know if you move those documents you’ll forget where they are, and it’s tax stuff/homework/your mom’s birthday card, and you can’t forget that. The bulb gets put aside until you deal with those things. But you don’t want to deal with them now, so the bulb waits.
- Throwing out the bulb requires safe disposal so that you don’t break it and accidentally cut yourself, or someone else in your home. You have no idea how to safely dispose of it. You put off changing the bulb until you figure out what to do with the old one.
On and on and on. Each step requires problem solving, prioritization, and reasoning. These are the hidden processes that go on in our minds every single moment of every day. Difficult tasks build up, compounding the problem of completing others, until each action requires ten more before you can solve the minor problem you started with. Changing a light bulb ends in a night of doing your taxes. Doing the dishes ends in standing in the dish soap aisle at the grocery story for a half hour trying to figure out which soap to buy for the dishwasher.
When a simple action requires the same effort from you as the most complex, abstract problem-solving…. to put it mildly, you’re fucked. Every day tasks require exhausting mental gymnastics.
So, be kind to the person who can’t seem to change a light bulb. There’s a lot that can stand in the way.
this is such a good addition to my post
Important info!
“Difficult tasks build up, compounding the problem of completing others, until each action requires ten more before you can solve the minor problem you started with. Changing a light bulb ends in a night of doing your taxes. Doing the dishes ends in standing in the dish soap aisle at the grocery story for a half hour trying to figure out which soap to buy for the dishwasher.”
I relate to this so hard.
Tag: understanding
[Image Descriptions:
All slides have a light blue background, and the text is written in blue rectangles with rounded corners.
Slide 1: The title is in white text inside a dark blue circle that is centred in the slide.
Sensory Overload And how to cope
Slide 2: The header is in a dark blue rectangle and white text, and the body is in a pale blue rectangle and black text.
Sensory overload has been found to be associated with disorders such as:
- Fibromyalgia (FM)
- Chronic Fatigue Syndrome (CFS)
- Post Traumatic Stress Disorder (PTSD)
- Autistic spectrum disorders
- Generalized Anxiety Disorder (GAD)
- Synesthesia
Slide 3: The text is in three pale blue rectangles that
go horizontally across the slide. All use black text. The last
rectangle has four smaller dark blue rectangles with white text inside
it for the four points. The text is centred in all of the rectangles.Sensory overload occurs when one (or more) of the body’s senses experiences over-stimulation from the environment.
Basically it feels like everything is happening at once, and is happening too fast for you to keep up with.
Sensory overload can result from the overstimulation of any of the senses.
Hearing: Loud noise or sound from multiple sources, such as several people talking at once.
Sight: Bright lights, strobe lights, or environments with lots of movement such as crowds or frequent scene changes on TV.
Smell and Taste: Strong aromas or spicy foods.
Touch: Tactile sensations such as being touched by another person or the feel of cloth on skin.
Slide 4: A heading in two light blue rectangles with black
text, followed by a table with a dark blue first row that has white
text, and then alternating pale blue and white rows with black text.
(The table is not really a table, it is just a four-column list.)Obviously, everyone reacts in differently to sensory overload.
Some behavioural examples are:
Irritability — “Shutting down” — Covers eyes around bright lights — Difficulty concentrating
Angry
outbursts — Refuses to interact and participate — Covers ears to close
out sounds or voices — Jumping from task to task without completing
Overexcitement — Low energy levels — Difficulty speaking — Compains about noises not effecting others
High energy levels — Sleepiness/fatigue — poor eye contact — Overly sensitive to sounds/lights/touch
Fidgeting and restlessness — Avoids touching/being touched — Muscle tension — Difficulty with social interactionsSlide 5: The header is in a dark blue box with pointy
corners and white text. The body is in a pale blue box with pointy
corners and black text.There are two different methods to prevent sensory overload: avoidance and setting limits:
- Create a more quiet and orderly environment – keeping the noise to a minimum and reducing the sense of clutter.
- Rest before big events.
- Focus your attention and energy on one thing at a time.
- Restrict time spent on various activities.
- Select settings to avoid crowds and noise.
- One may also limit interactions with specific people to help prevent sensory overload.
Slide 6: This looks the same as the last slide except the text in the header is black.
It is important in situations of sensory overload to calm oneself and return to a normal level.
- Remove yourself from the situation.
- Deep pressure against the skin combined with proprioceptive input
that stimulates the receptors in the joints and ligaments often calms
the nervous system.- Reducing sensory input such as eliminating distressing sounds and lowering the lights can help.
- Calming, focusing music works for some.
- Take an extended rest if a quick break doesn’t relieve the problem.
Slide 7: Four light blue rectangles with rounded corners, stacked one above the other, with black text.
What if someone you know is experiencing sensory overload?
Recognize the onset of overload. If they appear to
have lost abilities that they usually have, such as forgetting how to
speak, this is often a sign of severe overload.Reduce the noise level. If they are in a noisy area,
offer to guide them somewhere more quiet. Give time to process
questions and respond, because overload tends to slow processing. If you
can control the noise level, for example by turning off music, do so.Do not touch or crowd them. Many people in SO are
hypersensitive to touch – being touched or thinking they are about to be
touched can worsen the overload. If they are seated or are a small
child, get down to their level instead of looming above them.Slide 8: Similar to previous slide, only with three rectangles instead of four.
Don’t talk more than necessary. Ask if you need to
in order to help, but don’t try to say something reassuring or get them
talking about something else. Speech is sensory input, and can worsen
overload.If they have a jacket, they may want to put it on and put the hood up. This
helps to reduce stimulation, and many people find the weight of a
jacket comforting. If their jacket is not within reach, ask them if they
want you to bring it. A heavy blanket can also help in a similar way.Don’t react to aggression. Don’t take it personally.
It is rare for someone who is overloaded to cause serious harm, because
they don’t want to hurt you, just get out of the situation. Aggression
often occurs because you tried to touched/restrained/blocked their
escape.Slide 9: Similar to previous slide, only with two rectangles instead of three.
When they have calmed down, be aware that they will often be tired and more susceptible to overload for quite awhile afterwards. It
can take hours or days to fully recover from an episode of sensory
overload. If you can, try to reduce stress occurring later on as well.If they start self-injuring, you should usually not try to stop them.
Restraint is likely to make their overload worse. Only intervene if
they are doing something that could cause serious injury, such as hard
biting or banging their head. It’s a lot better to deal with self-injury indirectly by lowering overload.Slide 10: The header is in a dark blue rectangle with white
text, and the other text is in a row of five dark blue circles with
white text. The text is centred in all shapes.To summarise – Remember the 5 R’s
Recognise
The symptoms of overloadRemove
Yourself from the situationReduce
the stimulus causing the overloadRelax
Your body and calm yourself downRest
Yourself as you will most likely feel fatigue.]
Cut That Shit Out
There have been articles making the rounds again that psychologists are suggesting a certain someone has a severe mental illness.
Again. This is happening again. This spread of information and headlines, and clickbait, and general tomfoolery surrounding mental illness is once again making my disappointment in humanity rise.
First, it was the armchair doctors on social media saying ‘He’s crazy, he’s clearly got issues, he must have [insert dx here]’
Then, it was the preliminary rounds of ‘Psychologists are suggesting that he has a mental illness.’
Now, it’s ‘Psychologists are suggesting that he has a severe mental illness.’How about….and I know this is super unheard of….
WE CUT THAT SHIT OUT?
I don’t care whether or not he has a mental illness. I do care if he gets help, sure. But this….this whole idea that we can explain away the horrible things he’s done or said or blundered up with ‘mental illness’ is absurd. Or, if you’re not using it to explain his horrible behaviour, you’re using it to exemplify his lack of fitness to do his job.
BOTH OF THESE LINES OF THINKING CAUSE HORRIBLE PROBLEMS.
So, let’s start from the beginning. Psychologists, as medical professionals, should really fucking know better than to throw out even the suggestion of a diagnosis to the press, knowing full well the horrible stigma that still surrounds mental illness to this day. On top of that, as medical professionals, it’s kinda rude to be talking about someone, regardless of how high-profile they are, in a medical context outside of the context of their care. You don’t see oncologists blasting that so-and-so probably has cancer all over the press, so why are you broadcasting very real illnesses like they’re some kind of joke?!
Furthermore, mental illness is not an indication of someone’s ability to say or do horrible things. I’ve been in a fight like this before, and it’s really not fun. Not only does using mental illness as a catch-all for horrible behaviour endanger the victims of said person’s horrible behaviour (or at least fail to vindicate and acknowledge the harm said person is doing with the aforementioned behaviour,) it also removes accountability from the person in question, especially one with blame-shifting tendencies. ‘Oh, he doesn’t know what he’s doing, he’s mentally ill.’ This line of reasoning suggests that mentally ill people are unpredictable, volatile, and a danger to others. This is not always the case, and it’s a dangerous precedent to set, much like the HIV/AIDS crisis in the 80s [people being avoided for fear of contagion/people avoiding mentally ill people for fear of harm, people generating horrible stereotypes because of an illness that’s still misunderstood…]
On to the next point. Mental illness does not mean an inability to do one’s job. Ever. Full stop. Next question, please. High profile duties sure do require a lot of stamina, both physically and mentally. But DO NOT TELL ME that mental illness precludes someone from being a capable, functional member of society. I will shred you with my WORDS. Mental illness, much like any other illness, will set limits for each individual with a diagnosis. Some people have lower limits than others, and THAT IS OKAY. But to suggest that the reason someone is unfit because of a hypothetical diagnosis just fuels the hate fire that is mental health stigma, and I will fight to the death to make sure that that slows down or ends.
I’ve experienced workplace discrimination because of my limits that are caused by mental illness and self-care. Do you have any idea how demoralising that is? It makes it WORSE. I was passed up for promotions, told it’s useless to try, and not taken seriously when I had legitimate concerns about how things were being done. Eventually, the amount of nonsense I was dealing with came to a head, and I was forced to resign or risk my health.
People are already not listening when we try and make mental health a serious and valid issue, and this is NOT helping. It’s an insult to the movement that vies and pushes for mental illness to be treated the way it deserves to be treated in society; as a medical condition, a quirk/downfall/dysfunction/pick-a-word of one of the most important organs in the human body. Articles floating around in the news about how readily someone can be slapped with the label of mentally ill sends more people away from help and care, because they are afraid of what will happen if people find out.
Cut.that.shit.out.
Treat mentally ill people as people, ask them what their needs are, remember that they are more than medication and therapy and the doctors on their prescription labels. They are people, who deserve respect from a society that’s lambasting them without even acknowledging the harm.
8 Things Autistic People Want You To Know
1. Autism is a fundamental part of who we are and how we experience the world and it cannot be separated from who we are as people. Autism is not something which is clearly separated from our identities and our personalities – it’s something which affects every aspect of how we think about, experience and interact with the world around us. Autism isn’t something we have or something we’re suffering from, it’s something we are. For the vast majority of autistic people, autism is a part of our identity which means that despite common belief most of us prefer to be called “autistic” as opposed to “people with autism.”
Do not tell us that we only have value if we can separate our identities and our personalities from autism.
2. The vast majority of autistic people do not want a cure, we want acceptance and accommodations. Do not put your time and money into researching how to cure autism and how to prevent it, put time and money into accommodating and accepting autistic people. We do not wish to become neurotypical, we wish to change society so that we can be accommodated, accepted and included as autistic people. Our goal isn’t to become as close to neurotypical as possible, it is to get the opportunity to live happy, fulfilling lives as autistic people. It is society that needs to chance, not us.
3. We do not support Autism Speaks or their campaign #LightItUpBlue and neither should you. If you want to support autistic people, check out ASAN or Autism Women’s Network instead. If you don’t know why autistic people don’t support Autism Speaks, check out the many resources linked in this post.
4. Functioning labels are at best inaccurate and at worst actively harmful.
Functioning labels (claiming that some autistic people are “high-functioning” while others are “low-functioning”) do more harm than good, not just because they aren’t able to give you an accurate impression of what supports an individual autistic person needs but because they’re mainly used to either silence or invalidate autistic people. Autistic people who speak up about the issues concerning them are labelled “high-functioning” to invalidate what they have to say as being inaccurate and irrelevant for other autistic people and so-called “low-functioning” autistic people are being silenced and spoken over because they are written off as too ‘low-functioning’ to have nuanced, relevant opinions or even communicate at all. Instead of forcing autistic people into one of two boxes, name the specific issues or strengths that you are referring to when you’re calling them low-functioning or high-functioning. Are they non-verbal? Say that instead of calling them low-functioning. Are they able to manage a job? Say that instead of calling them high-functioning.
5. Non-verbal autistic people can and do learn to communicate using other communication forms than verbal speech and they’re all individuals with their own thoughts, feelings, wants and opinions. You do not get to speak on behalf of non-verbal autistic people. You do not get to assume that you know exactly what they think, want and feel, especially not when you have never made any effort to communicate with any of them. Instead of assuming that you know what non-verbal autistic people think and feel, try listening to what they have to say by reading the words of some non-verbal autistic people such as @lysikan or Amy Sequenzia or Emma Zurcher-Long.
6. Applied Behavior Analysis, the most widespread and well-known therapy for autistic children, does more harm than good. The goal of ABA therapy is to train and force autistic people into hiding their autistic traits by all means possible as if passing for neurotypical should be the goal of all autistic people regardless of what consequences it might have for their general well-being and their mental health. If you don’t see why that is a problem, check out this masterpost by @neurowonderful.
7. People diagnosed with Aspergers Syndrome are just as autistic as people diagnosed with other variants of Autism Spectrum Disorder.
Aspergers is autism and to emphasize this, aspergers and other variants of autism have been united under a broader diagnosis called “autism spectrum disorder” in the DSM-5, Back when aspergers was a separate diagnosis, the only difference between whether you got diagnosed with aspergers or autism was whether you spoke before you were three years old – something which says approximately nothing about your struggles and abilities later in life. The common misconception that aspergers and autism is two different things is just that – a misconception.
8. If you want to learn more about autism, listen to autistic people – not our parents, our siblings, our therapists our or caregivers. Autistic people are the ones who know the most about being autistic, so if you want to learn about autism we’re the ones you should ask. If you want to learn more about the different aspects of autism, @neurowonderful‘s youtube series “Ask An Autistic” is a good place to start. Here is an index over all the episodes so that you can easily find the topic you want to learn about.
You can also visit @askanautistic where autistic people are ready to answer whatever questions you may have about autism.
Please reblog this post. It’s time tumblr starts listening to autistic people.
I’m asking you to reblog this because I want this to go vital. I don’t just want this to be passed around inside tumblrs autistic community where we already know about and agree with all of the above statements. I want this to end up on the dashes of people who don’t know anything about autism, who haven’t thought twice about autism and autistic people during their time on tumblr – and that can only happen if you help me out.
Fact: Autistic, developmentally disabled and intellectually disabled adults can be childLIKE, but they are not children. They can have childlike qualities and like things usually associated with children, but they are still ADULTS.
Sometimes depression is apathy. It is staring at the roof for hours and it noticing the time ticking by. It is clicking ‘next episode’ while not knowing what has happened for the last two seasons. It is reading page after page as the words fall out of your head with every flip. It is eating exclusively cereal for days at a time.
Sometimes depression is sadness. It overwhelms your soul like a tsunami, making you lurch in the darkness and gasp for breath like it is a butterfly just out of reach. It is sobbing in the shower over nothing in particular. It is concocting irrationally sad hypotheticals in which your loved ones die or leave you or stop caring and you are alone.
Sometimes depression is frustration. It is the stack of rotting dishes in the sink that you know you have to clean but you cannot bring yourself to stand up let alone scrub. It is wanting to tear your hair out from self hatred and pent up anger at your brain which has put you in this position. It is the unanswered messages from people who care which drive you mad in the night as you can’t string the right words together in the right order to do them justice.
Sometimes depression is absent. It is bursts of energy and productivity, designed to trick you into thinking that the light of the end of the tunnel is right there, before it throws you down another dark corridor. It is waking up feeling peppy and bright and energetic, allowing to get on with you life and be happy for an instant, but meeting you at the end of the day like a circling vulture ready to pick apart every choice you made and feast on your mistakes.
Sometimes depression is pathetic. It is feeling accomplished when you get out of bed in the mid-afternoon. It is streaming tears as you struggle to swallow slimy packet noodles. It is pushing away those who love you and support you because loneliness is paramount, and the depression must be fed, must be appeased, must be put before everything.
Sometimes depression is comforting. It is an old friend with open arms and a warm bed, ready and willing to pull you under, to keep you floating in its dark waters, to fill your lungs with its greyscale and preserve you as a message to the rest.
Sometimes depression is unsatisfactory. It is hope-crushing routine designed to keep your spirit in orbit. It is unchecked to-do lists and unfinished projects. It is fleeting dreams which never got the run needed to take off.
Sometimes depression is pressure. It is a physical presence looking over your shoulder, looming, predicting failure and ensuring it is correct. It is tightness in your chest for no reason. It is headaches and stomachaches and heartaches and aches that wrack your body for any sign of resistance, to draw it out and destroy it.
Depression is multifaceted. It is an enemy like any other, complete with weaknesses which can be exploited until it has been conquered. Do not let it win. Seek help, surround yourself with a positive support network, remember that you are not alone, and you will beat this ❤
In light of everything going on…
Could people, anyone capable of doing so, please do something every single time you see someone describe ableism as being about a list of words you are supposed to say and a list of words you’re not supposed to say?
Ableism is about going to a hospital and getting told by doctors that you’d be better off going home and dying than getting a feeding tube.
Ableism is about going to get SSI and getting told that if you can blog (or do some other random thing that is not gainful employment and will never be), you can work for gainful employment.
Ableism is about your own family believing you’re lazy or exaggerating or faking because you don’t seem like their idea of what a disabled person is (young white guy in a wheelchair from paraplegia, usually – who are actually usually among the more privileged and able to work of disabled people, not that they have it easy by any means, especially since able to work doesn’t mean able to get hired in an ableist workforce).
Ableism is about valuing people based on what we can do, rather than valuing people because we exist.
Ableism is about drawing a line past which people don’t count as disabled anymore, they just count as not even people, and not worth protecting.
Ableism is about there being entire books where people think it’s legitimate to debate whether people with intellectual or other cognitive or developmental disabilities (those are three totally different but overlapping categories, just so you’re aware) count as persons or not. Both “philosophically” and under law. Google Peter Singer if you don’t believe me (he also doesn’t think newborns are persons, but everyone loves him because he supports animal rights – by bringing down disabled human beings in the process, and everyone knows – because of ableism, of course – that disabled human beings don’t matter anyway, not as much as animals).
Ableism is not – at least not mostly – about whether ‘stupid’ is a slur. It’s just not. And it infuriates me both when disabled people treat it primarily that way, and when nondisabled people treat it primarily that way.
Because when you do a serious discussion of racism, and then classism, and then sexism, and transphobia, and transmisogyny, and homophobia, and biphobia, and every other kind of oppression you can think of, large and small, and you give them in-depth coverage… and then you come to ableism. And it’s always last. And it’s always a footnote to all the other kinds of oppression. And the footnote always reads “And ableism… don’t say stupid, or idiot, instead, say these other words that don’t actually form an adequate replacement for those first words at all.”
Which diminishes the understanding of the power of actual ableist slurs such as retard (hint: a slur carries with it as part of the meaning, that the person being described by the slur is not a real person – an insult like ‘stupid’ can be used in an ableist or non-ableist way but is not necessarily a slur even when it’s ableist). And it also diminishes the understanding of what ableism actually is, by not taking seriously the fact that ableism kills people.
And even this act of always putting ableism last, always treating it as less serious or possibly not even a real ism at all (possibly “political correctness gone amok”, possibly “(eyeroll) yet another group of people wanting to claim they’re oppressed and really stealing the idea of oppression from real oppressed people like people of color and taking their ideas and successes without crediting them at all”, however it’s phrased… that is one of the worst things about ableism in circles that claim to want to deal with oppression in all its forms. Because it basically throws us to the wolves while claiming there are no wolves to throw us to and that we aren’t really dying in huge numbers everywhere and so forth. There are ways in which ableism becomes worse, more deadly, because of being diminished in this way by all the “serious” anti-oppression people.
So – I don’t care if you call what you do social justice or anti-oppression or anything else. I don’t care if you’re part of those circles or not. I don’t care if you use ideas from those circles or not. I just don’t care. All I care about is that you take ableism seriously and that you take the danger disabled people are in right now seriously and part of taking it seriously is making sure that people understand it’s not about what words are politically correct or politically incorrect at this particular moment in time when it comes to disability.
Because disabled people are often the first to die – or among the first – in situations like this. And this is not an accident. It is because the people with power know that a lot of people don’t give a rat’s ass what happens to us, whether on the right or on the left. It’s because they know that you don’t take our oppression seriously. It’s because they know that our deaths will be considered inevitable. Have you ever considered it inevitable that disabled people and old people end up in nursing homes, group homes, developmental centers, psych wards, and other institutional settings? – sad, maybe, tragic even, but inevitable consequences of disability? Because that’s the same kind of thinking that makes our deaths inevitable. (By the way, nursing homes are the cause of death for a lot of us, but our disability gets blamed instead and this is all normalized so much you probably can’t even see it.) Have you ever considered it inevitable that disabled people contemplate suicide, and never thought it might be the result of the same forces that cause other oppressed people to contemplate suicide? Have you ever responded almost reflexively to disabled people’s suicidal thoughts by saying that we ought to have the right to kill ourselves easily and painlessly (when you’d never say the same of, say, queer teenagers), without even thinking that maybe most of the time we’re suicidal for the same reason queer teenagers often are? Have you ever thought that when we don’t get SSI and die on the streets, that’s just…. unfortunate but sort of inevitable? That basically our deaths however and whenever they happen are unfortunate but inevitable consequences of being disabled, and you’ve never even thought of the way ableism plays both into our deaths themselves and into your own thoughts about them?
Because that’s why you need to get people to take ableism seriously immediately. And that’s why I’ve always been infuriated by people not taking ableism seriously. Because I’ve been that person in that hospital room being told by doctors that I would do better off to go home and die of a totally preventable pneumonia or starvation, rather than get the combination of feeding tubes that would prevent both?
Oh and by the way – don’t quote me statistics about aspiration pneumonia and feeding tubes unless you know my exact disability, the exact cause of the aspiration pneumonia, and the exact configuration and type of feeding tubes I use and exactly how I use them. I know that as a general rule feeding tubes don’t prevent aspiration and may even cause it, but in my particular circumstances that doesn’t apply. There are dozens of reasons for feeding tubes, dozens of types of feeding tubes, and if you don’t understand all of this in-depth you have no basis for commenting. I went from getting aspiration pneumonia seven times in the first few months of a year, to getting it once or twice a year at most, instantly, with the right combination of feeding tubes. And I gained back roughly half of the 75 pounds I’d lost rapidly as a result of my stomach disorder.
And I’m happy, and I’m fucking alive, which is more than I expected by now. I didn’t expect to hit 34 or 35, and I’m now 36. I might even eventually hit old age at this point, who knows. But however long I lived, I deserved a chance to be alive. And it took a lot of people calling the hospital and demanding I get treated right, to even get the feeding tube. They couldn’t deny it to me – because I needed it – so they just tried every trick they knew to talk me out of agreeing to it. After tumblr and other places resulted in enough phone calls to the hospital, I got my tube the next day, although my problems with ableism in that hospital were and remain far from over and the circumstances of getting the tube and the aftermath were something out of a nightmare scenario. Not because they had to be, but because they could get away with it, because ableism is everywhere and practically unacknowledged by just about everyone, including especially the people who supposedly care the most about disabled people (family, caregivers, “helping professionals”, anti-oppression people, etc).
Anyway, this has gotten into a long enough rant I’ll be surprised if you could read this far – I probably couldn’t (I write better than I read). But hopefully you get the message. Right now is a time when disabled Americans, especially those of us facing other forms of oppression (ever try to get proper medical care as a queer, genderless and visibly gender-atypical, poor person with developmental disabilities? …yeah) need people fighting ableism more than ever. And that doesn’t mean tacking up a list of words that everyone can say instead of ‘stupid’. And treating it like it does, is part of the problem that leads to us dying in circumstances like these.
“In that way, you’ve acknowledged that you’re unsure, that you don’t know what to do or say. You’ve acknowledged that you see them. They feel seen. They feel heard and acknowledged, which is huge for someone who’s in crisis.”
Wentworth Miller | Q&A at Oxford Union | 2016 | xThis is…actually the most beautiful and helpful advice, honestly.



























