Beware of Autism Awareness Month by Amy Sequenzia.

“Autism Awareness Month” Awareness

I am writing this in March because I want everyone to start getting ready for April, which was declared by non-Autistics to be “Autism Awareness Month“.

I am declaring March: “Autism Awareness Month” Awareness Month. To make it less confusing, let’s call March: The Month to Beware of Autism Awareness Month.

Why am I doing this?

April’s Autism Awareness Month

Because Autism Awareness Month is the month when all those so-called autism advocacy organizations double, triple down on using our neurology to raise money by advertising how terrible it is to have an Autistic person in a family.

Because Autism Awareness Month is the month when ableism is so pervasive, I feel like the world is openly letting me know I am unworthy and undesirable.

Because Autism Awareness Month  is the month when Autistics who need more support than society deems “reasonable”, Autistics like me, are singled out as the “biggest epidemic ever”, and as the reason for more money thrown into research that don’t seek to improve our lives, but to find ways to make sure people like me are prevented, are never born.

Because  Autism Awareness Month  is the month when openly talking about, and advocating eugenics due to neurology is not only acceptable, but also encouraged and supported.

Because Autism Awareness Month  is the month when ABA practitioners, proponents of seclusion and restraints, use their voice to advocate for more torturous practices to “fix” us. These practices actually break us, as an excuse to make us act “normal” or, at minimum, in an “acceptable” way, for the comfort of the neurotypical majority.

And after they break us, they blame us for the constant discrimination against us – by saying how much we burden our families.

Because  Autism Awareness Month is the month of the neurotypical mass hysteria about the numbers: “1 in X children are diagnosed ‘with autism’” – calling us a health crisis, an economic crisis, a reason for more eugenics advocacy and torture apologism.

Becaus Autism Awareness Month  is the month of endless walks that lead to nowhere, of “special” TV events to try to “understand autism”, of parents’ public tears that come with a very explicit message that everyone needs to listen and sympathize with those parents’ suffering, the “ordeal” people like me put them through. Of course, this happens all year long but in April the whole world is called upon to public praise parents for their “heroic” act of parenting Autistic children. If some dare not to do this, if someone dares to respect Autistics, this is declared to be an attack on the parents.

Because Autism Awareness Month  is the month when our humanity is reduced to platitudes, memes, walks and puzzle pieces; when our dignity is completely ignored so that parents can expose us, deny us privacy, by telling the world anecdotes about us in order to attract sympathetic looks and social media “likes”. Again, this happens all year long but in April the invasion of our privacy becomes a duty, a duty to disrespect us that is beyond reprehension.

Because  Autism Awareness Month  is the month when neurotypical people unabashedly excuse themselves for the abusive silencing of Autistic voices. They feel good making us feel bad, and they don’t even pretend to care: they are, after all, “raising awareness”. Privacy, dignity, respect – those don’t fit in the April agenda.

Autistics have been fighting back against “Autism Awareness” and celebrating AUTISM ACCEPTANCE but despite some changes, the silencing still thrives.

So, March is THE MONTH TO BEWARE OF AUTISM AWARENESS MONTH.

It is our time to prepare ourselves to fight for our right to be.

Beware of April celebrations.

Beware of those who “celebrate” dismissing our humanity.

Autism Awareness Month was never about Autism, or Autistics. It has always been a pity-party-fundraiser on the backs of our right to exist as we are.

Intelligence Is an Ableist Concept, by Amy Sequenzia.

Warning: use of the R-word.

Am I “Intelligent”?

Too many times I see the word “intelligence” in articles that are supposedly about disability rights.

The word comes up to explain that being disabled does not mean that there is a “problem” with the brain. Many times this happens when a physically disabled person, or someone talking about physical disabilities, want to point out that “their minds are fine”.

The word is also used to tell stories of non-speaking Autistics who learned to type to communicate and “proved” that they are “intelligent”.

I used this when I was young too. I kept using it until a few years ago. Being a disabled person who needs many supports, and who had been physically and verbally abused because I was so “retarded” might have been part of why I felt like I needed to say “I am intelligent”.

My parents and my family also liked to say how “intelligent” I really was. The reason might be because of all the years of feeling frustrated with the prognosis of a tragic future given by all the doctors. Having a daughter that had finally “proved her intelligence” might have felt like vindication.

Being Human Should Be Enough to Deserve Rights

Today, I know better. I know that being human should be enough to deserve rights. I know that the reason I type is not to “prove” that I am “intelligent”. I type because I have words.

People who have intellectual disabilities are assumed to be “not intelligent”. By using “intelligence” as a reason why we deserve accessibility and respect, we are ignoring and harming those who have intellectual disabilities, the ones who are still not valued, the ones whose voice is still not understood, and actively ignored.

I also believe that “intelligence” is a social construct. It is subjective and cannot be proved. Some people might be better at certain things, we even call some of those people “geniuses”. But their “intelligence” is the product of a concept of the time and place they live in. It is possible that, in another time, in another place, their “intelligence” would not be “superior”.

I do understand that most people don’t think about concepts and constructs when talking about intelligence, or when saying that someone is “so intelligent”. But the word can, and is, used to harm and exclude some disabled people, including myself, and people who look a lot like me.

The Merriam-Webster dictionary definition of “intelligence” includes:

1.The ability to learn or understand or to deal with new or trying situations.
2.Reason; also : the skilled use of reason.
3.The ability to apply knowledge to manipulate one’s environment or to think abstractly as measured by objective criteria (as tests)
4.Mental acuteness.
5.The act of understanding : comprehension

So, am I “intelligent”?

1. I can learn and I can understand things and situations but I can’t always show that I have learned, or that I understand. Sometimes, I don’t understand things. Sometimes, I don’t really learn things. Yes, this happens.

The part about “dealing with new situations”, is so subjective, it does not make sense. Dealing with new and trying situations involve emotions, and emotions have too many variables. This so-called “intelligence”, measured by an I.Q. test, has nothing to do with it.

2. I think I can use reason but if I am skilled enough will also depend on a lot of other factors, including the willingness of others to see my point of view, something that is out of my control.

3. I can only apply my knowledge if I have supports. I am able to learn but sometimes what I learn stays in my head, and I cannot translate my knowledge into action. Even when I can show what I learned, I still need a lot of help. But then again, Stephen Hawking also needs a lot of help to let us know his thoughts. Without all the supports he has, we would not be able to know what he wants us to know.

4. I have high mental acuteness, unless I have low mental acuteness. Yes, it is that simple. Lack of sleep and seizures are the main variable.

5. As I said, I can understand things but cannot always express them. Or I need more time to understand them, or to process and be able to show I do comprehend.

A note about I.Q. and I.Q. tests.

The Merriam-Webster dictionary definition is:

1 : a number used to express the apparent relative intelligence of a person: as
a : the ratio of the mental age (as reported on a standardized test) to the chronological age multiplied by 100
b : a score determined by one’s performance on a standardized intelligence test relative to the average performance of others of the same age.

There are many problems with standardized tests, as they are usually developed to evaluate speaking people with what is considered average motor coordination. According to the definition above, the idea of IQ is pointless: it is relative, it cannot be measured by an arbitrarily created metaphorical stick.

It also fails because measuring what one should know at any given age is also arbitrary. Many disabled people like me have been institutionalized, and not given any education. Without access to information, how can a test grade our knowledge of said information?

So, am I “intelligent”?

According to an I.Q. test I was subject to, I am “severely retarded”. I had a “mental age” way below my chronological age. Doctors’ observations did point out that I “seemed to be absorbing information” but “got easily distracted.” In a way, the same people who gave me the test acknowledged that the test was flawed.

Am I “intelligent”? I don’t care. I am me, and I deserve the same rights as any human being. If I am not respected as a person, “incredible super intelligence powers” will not change that.

Intelligence, used as a way to justify our right to accessibility, and our value as people, is an ableist concept.

How I Tell My Story  by Amy Sequenzia.

Living my disabled life: My Story Is Mine to Tell  Part 3.  (Part 1 Autism: My Story Is Mine to Tell and  Part 2 Love, Respect and “Autism Parents” )

By living my life.

Unapologetically.
Fiercely.
With pride.

I am me.
I am disabled and I am a perfect being, despite the bias and oppression imposed on me. I am a perfect being despite my human flaws.

My story is mine. The life I live is the one I have.

I like my life.

I don’t like what non-disabled people believe my life to be.

Because what they believe to be doesn’t say anything about me. It says a lot about them.

I like my life.

I don’t tell my story to teach. That would be free emotional labor.
If anyone learns from my words, that’s because they choose to listen.

But I don’t want my story to be a series of teachable moments.
I tell my story because society forces me to reclaim my voice.
I tell my story because I will not allow others to define, grade, and assign value to my life, to me.

I don’t tell my story to inspire. I refuse to be an inspiration, unless the inspiring feeling turns into action against oppression and silencing of disabled people.

Inspiration is an action.

Inspiration that doesn’t lead to action doesn’t have anything to do with my life.

Anyone who “feels inspired” and does’t act is just looking for an excuse for their lack of empathy.

I tell my story because I am the only one who holds the truth of my life, of living my disabled life.

Other people can listen, learn, ignore, or even judge me. I cannot control that.
They can agree, or disagree, with things I do.

What they cannot do is to impose a narrative of what being me is like, or to decide how much worth my life has.

I define myself, and I value myself.
Other people’s opinions can make me happy, or annoyed, but they don’t change who I am. They don’t change my human worth.

I tell my story because I have a voice, and I am loud.

Love, Respect and “Autism Parents” : My Story is Mine to Tell – Part 2 by Amy Sequenzia.

This is the second post on how Autistic voices are dismissed and erased when the world talks about autism, and about what being Autistic means.

The first post was about how the “experts”, the media, and so-called advocacy organizations tell our stories.

This post is about how parents tell our stories.

It is a little more complex, because while it is true that parents usually know their children better than other people, and while we all hope that every parent loves their children more than anything, we also know that those hopes get often shattered, especially when disabilities are involved.

First: love is not enough if there is no respect.

Second: I don’t think people expect to have disabled children, and a diagnosis can be shocking. But a parent is supposed to parent and if they are going to grieve and mourn the fact that a child is disabled, they are already unfit for parenthood.

Third: some parents do an outstanding job being respectful.

. They don’t look for public validation of their – oftentimes very hard – work of finding the best supports for their children.

. They look for supports for themselves without violating their children’s privacy.

. They respect and support their children, and their children’s community, unconditionally.

. They only tell their children’s story if and when the child consents to this.

“Autism Parents”

This post is about the parents who still refuse to acknowledge their Autistic children as individuals with their own rights, wants, needs, wishes, life.

So, how do the parents mentioned above tell our stories?

They tell our stories by making it about them.

They call themselves “autism parents”, as if this is a real thing.

I know parents who have learnt that their Autistic children are individuals, human beings with their own stories to tell. They respect their children, and they respect the Autistic community.

I know (hope) that most parents love their children.
I know that many don’t. Some try to, or do, kill their Autistic children.

Some parents talk about accepting their Autistic children but contradict themselves when force the children to act – and react to input from the rest of the world – in a way that society will feel comfortable with.

This is not Autism Acceptance.
This is Conditional Acceptance – making everything easier for the parents, for the family, but not for the Autistic person.

Acceptance is love plus action. It is being unconditionally on the side of the Autistic person, defying the imposed timelines and the neuromajority’s arbitrary rules.

Yes, there are things we all should learn, and some of those things might make our lives easier.
It doesn’t mean that we must be ashamed if we don’t learn them, or if we don’t meet expectations.

Acceptance includes accessibility.
It means all of us, the way we are, anywhere we are.

That is not how we tell our stories.

Guidelines When Talking About Their Children

Parents should know some very important “guidelines” when talking about their children.

. Don’t talk about them based on what you hear from non-Autistics.
. Talk to Autistic adults. Your child is part of the Autistic community and we welcome them.
. You have your own story and that’s the story you should tell. If it involves your child, be careful about what you share and ask for consent. If the child cannot consent, assume that they don’t.
. Your job is to protect, respect and value your child, and to help them find their own voices, so they can tell their own stories.

Each one of us has a unique voice.

Each one of us has a unique voice. We also feel and experience life, and the world, in our own unique way. How we perceive things is not the same way our parents do.

Respecting our experience and our feelings must be part of the love parents, or people that have a parental role, say they have for us.

Love without respect is not enough.

Our stories are uniquely ours and are not dictated by blood relations or by a designation on a piece of paper.

My Story is Mine to Tell

by Amy Sequenzia.

Everywhere – on the web, in conferences, in books, on TV and on the radio, in college lecture halls – people are talking about autism. Too many of these voices are non-autistic voices.

Too many of these voices don’t really know what autism is.
Too many of these voices are simply telling old stories – full of assumptions – that non-Autistics voices have told before.
Too many of these voices are actively silencing and ignoring Autistic voices, while being hostile to us when we tell them they are wrong.

They tell our stories but they don’t listen to us.
They tell our stories and feed the stigma.
They use our neurology for their own gain.
They don’t credit us when their assumptions are debunked by something we have been saying forever.

Our stories are ours to tell.
Non-autistic voices are not telling our stories, they are telling their ableist perception of who we are.

How “Experts” tell our stories:

They use the pathology paradigm – autism as something to be fixed.

They list deficits according to the normative thinking.

They use functioning labels to grade us and assign value – if we can act and look less Autistic – then they silence us if we speak too well, or if we cannot speak.

They still say we lack empathy. The ones who finally admit that we do have empathy – as we have been saying forever – do not credit us for helping them “understand” that.

They call autism a disorder, when it is a completely different order.

They do not credit our understanding of our own identity.

They don’t value our identity at all.

How the media tell our stories:

The wrong way, by

Silencing us.

Ignoring us.

Talking about us, without us.

The inspiration porn way, by making non-autistic and non-disabled people feel good about themselves while objectifying our lives.

The tragic way, by using our lives to devalue us while martyrizing parents and caregivers.

The dismissive way, by blaming us and our diagnosis on tragic events, on crimes and even on our own murders.

The fake way, by lying about how much we “cost” to the government, how much we “abuse” the system, while offering no proof of those claims, and by not retracting when their lies are exposed.

The erasing way, by making movies and shows that are about us but only tell the stories from the parent’s and “experts” point of view.

The disrespectful way, by demanding use of Person First Language, even when we are talking about ourselves. They will change our words to fit their preferences about how we identify.

How “advocacy” organizations tell our stories:

By listing our so-called deficits as they ask for money that will be used to spread the list of the so-called problems created by the so-called deficits.

Some organizations say we are a tragic disease caused by vaccines. Yes, this still happens.

When organizations ask for our input, for our presence in their conference, they expect us to speak for free, and to pay for travel expenses. Neurotypical “experts” are usually paid to speak about us, without us.

The Worst Autism Advocacy Organization – Autism Speaks – raises a lot of money, recruits a lot of celebrities, and doesn’t provide anything of value to Autistic lives. It silences our voices, blocks us on social media, or ignores us.

This is how they refer to us:
A family tragedy.
Burdens.
Expensive.
Cause of divorces.
Cause of broken dreams.
Lepers.

This is not how we tell our stories.

We tell our stories by living our lives.
We tell our stories when and where we decide to do so.
When we share our experiences of the world, we are simply showing you our humanity.

We are not a pathology to be explained, a mystery to be solved, a problem to be fixed.
We are not a bag of deficits, nor are we a bundle of quirkiness.

Our lives are not a script where the end is the neurotypical normative ideal. We might use scripts to communicate but I doubt the “experts” ever asked any of us why.

We are people, neurodivergent, neurominority.
We tell our stories because only we can be truthful.

We tell our stories because too many non-autistics are talking about us, without us.

We tell our stories because the stories being told about us are really about how the neurotypical majority sees us, filtered by the thick lens of ableism.
Or we don’t tell our stories, because we are people, and we must have our choices respected.

If you are not an Autistic person, and you are telling our stories, you are likely telling lies, assumptions and wrong perceptions.

If you are listening to a non-autistic person telling our stories without citations, crediting Autistic voices, forget what you heard.

Our stories are only true stories of autism, and of what being Autistic is, if we tell them ourselves.

by Amy Sequenzia

Being Proudly Autistic

Being proudly Autistic.
Being proudly Disabled.
Being me.
Telling my story because my voice is my own.
My story is mine to tell.
I define myself.

Since I was very young I have had an independent mind. Sometimes – no, many times – for a long time, I was silenced.
I was told to comply.
I was called names.
To many, I didn’t have dignity, I didn’t deserve dignity.

But I persevered.
Perseverated.
Persisted.

Some people saw my humanity.
To them, I let myself known.
Without words.
With smiles.
An occasional hug.
And joy in my eyes.

When words came to me through typing, I began telling my story.
But still, I was called names.
Some people – no, many people – dismissed my typed voice.
To them, disabled people don’t have the right to challenge the normative society’s assumptions about us.

I was silenced again.
But I didn’t lose my independent mind.
I was willingly non-compliant.
Because my story is mine to tell.
Because I am me.

I didn’t stop persisting.
Persevering.
Perseverating.

Until I found more people who would listen to me.
Or maybe they found me.
And I found my people.
They were telling their stories.
They were relentlessly persisting.

I found my people.
Disabled people.
I found my pride.
Disabled pride.
Autistic pride.

I tell my stories.
I define myself.

by Amy Sequenzia.

I RESIST

My resistance is an act of defiance.

I defy the assumptions of an unlivable life
Of a tragic existence
Of dreams that would never become true.

The world said I wouldn’t
– I defied.

The world said I couldn’t
– I defied.

The world says that I won’t, that I can’t
– I resist.

I defied the expectations, and I kept existing.
I defied assumptions, and I celebrate my existence.

I resist the ones who insist on erasing my existence.
I defy the ones who deny me respect.

My existence is an act of defiance.
To exist in this world is to resist.

I Exist.
I Defy.
I Resist.

 

When Clinicians Attribute All Psychiatric Symptomatology to the Autism

Autistic people find their way to therapy when symptoms of depression, anxiety, OCD and other diagnoses become problematic to them in their daily lives. When a client has been previously diagnosed with autism it is common for mental health clinicians to attribute all psychiatric symptomatology to the autism, which often results in autistics not being diagnosed or treated for comorbid mental illnesses when warranted.

As clinicians we need to understand the autistic operating system – in other words, to see the autism – if we are to be helpful to our autistic clients. When we do not have a strong grasp on this the results are that our clients are not served well. Clinicians without a good understanding of autism generally make one of two mistakes. One mistake is not seeing the autism at all, but instead seeing individual characteristics of autism and matching them with a clinical diagnosis. The other mistake is, once the autism has been diagnosed every symptom that point forward is attributed to the autism.

Today we will look at an example of when clinicians think, “It’s all the autism.”

Example: Elaina was a 9 year-old autistic girl who was in a fourth grade. She interacted with her visual schedule tracking her day, which included some classes along with Speech and OT. She had two friends she ate lunch with and played with at recess. At home, Elaina and her 8 year-old brother each did household chores, participated in dinner conversations about their day and attended church on the weekend.

Elaina started hitting. First she occasionally hit her teachers. Within a few weeks she was also hitting her peers at school and her parents and brother at home. Her family stopped going to church because Elaina could not attend children’s Sunday School class unless one of her parents attended with her to keep her from hitting other children. In fact, Elaina’s life became smaller and smaller as her parents stopped taking her out into the community.

Initially everyone in Elaina’s life attributed the hitting to her autism. The school team worked very hard trying to change this behavior, but to no avail. Elaina saw a psychiatrist who prescribed a psychotropic often used for children with uncontrollable behavior. Other than making Elaina drowsy for a few weeks, the medication did not change her hitting behavior. Whenever anyone asked Elaina why she was hitting Elaina would say, “Don’t hit!” and would say that she would not hit again. The psychiatrist referred Elaina to a therapist.

Over the course of several sessions it was discovered that Elaina suffered from anxiety. When her anxiety felt unbearable she would hit. The hitting ensured people would back off which gave time and space for anxiety to come down.

How was this discovered when Elaina could not tell why she was hitting?

From the first session the context was set using a visual timer and a visual written schedule for the session. Her schedule was the same each time – check in with mom, set timer, therapist’s choice and Elaina’s choice. Elaina had the last 10 minutes to participate in a pleasurable activity of her choice. The therapist provided three choices of activities Elaina enjoyed and that were easily accomplished in the allotted time.

During the therapist’s choice time the therapist would have Elaina recall a specific hitting incident and then cartoon that event. To start Elaina could tell about the act of hitting. Once it was drawn with stick figures and word bubbles, which Elaina was great at making accurate, she was then able to tell other pieces of the incident. These pieces were not told in chronological order so Elaina’s story didn’t often make sense to the therapist. The therapist took to drawing each piece of the story on a sticky note so Elaina could see it and decide if this piece came before or after the hit. Thus, more and more pieces were elicited. Soon there were enough pieces to tell the story in chronological order so that it made sense.

When there were three such stories the therapist began noticing a pattern so was able to explore the story before the hitting story. Using the same cartooning context Elaina began revealing this story of what was happening for her before the hitting. These sticky notes were a different color and this story was visually placed ahead of the hitting story. Soon the three hitting stories each had a pre story in front of them.

It became apparent that Elaina was experiencing a high degree of anxiety for the half hour or so before the hitting occurred. Therapy then became focused on teaching Elaina and the adults around her the signs of her anxiety, which were subtle, along with teaching Elaina relaxation techniques geared toward bringing her anxiety down. An app was used that read Elaina’s heart rate so she could see it and then watch it come down as she employed one of her relaxation techniques.

Additionally, this app was used for Elaina to check periodically (it was right on her schedule) to see her heart rate. Elaina and her therapist developed a chart that showed which relaxation techniques to use for each heart rate range. Elaina was able to manage her anxiety this way for several months, the hitting lessened and then altogether stopped. She was discharged from therapy.

Three years later, as middle school student, Elaina returned to therapy. Her anxiety management needed some assistance. At that time she was started on a low dose antianxiety medication and her relaxation techniques were reviewed, some revised and some new ones added. The area of mindfulness was explored and added to Elaina’s daily routine. Additionally, new information on the eighth sensory system – interoception – was looked at, along with the interoception activities from the book Interoception: The Eighth Sensory System by Kelly Mahler.

In Elaina’s example it is easy to see that if her anxiety had never been diagnosed and addressed the hitting likely would not have stopped. Alternatively, if a behavioral program had been instituted to stop the hitting without ever having addressed the underlying anxiety, Elaina likely would have learned to replace the hitting with an alternate behavior to help her get people to back off.

(Note: It has been my experience when a behavior is extinguished without understanding and addressing it’s function individuals most often come up with a replacement behavior that is of increased intensity. It serves nobody’s best interest to simply extinguish a behavior, even though this can and is done to autistics quite frequently.)

Attributing Everything to the Autism and Not Seeing the Autism at All Do Not Support Progress

When clinicians do not have a good understanding of the autistic operating system they tend to lean toward one of the two mistakes of either attributing everything to the autism or not seeing the autism at all. Neither is helpful in supporting therapeutic progress of autistic clients. The Autistic Operating System delves further into this topic.

Mental Health Therapy and the Autistic Client: When Clinicians Don’t See the Autism looks at the other easily made clinical mistake with autistic clients – when we do not recognize the autism because we can’t see the forest for the trees! Over time these clients tend to wind up with multiple psychiatric diagnoses for which none of the typical treatments have been effective in lessening symptoms. These clients’ individual symptoms are sometimes collectively better known as autism, but because the autism hasn’t been recognized we miss the boat in rendering effective treatment.

Going forward we will delve into learning about autistic operating system and how to deliver mental health therapy to clients who happen to be autistic. Hope to see you back!

(Note: In my practice I see clients who happen to be autistic. Their autism is usually not the reason they seek therapy, but it certainly affects how the therapy for their depression, anxiety or other presenting symptoms is delivered. When mental health therapy is delivered in a usual manner and not based upon the autistic operating system of the client it generally is not very effective.)

This is the second in a series of posts about trauma due to criminalization of disabled students by Amy Sequenzia.
Content Warning: ableist slurs, description of abuse.

I write this post based on the case linked here, NC Boy With Autism Slapped: Former Teacher Gets Jailtime , and on similar cases that make the news when they happen but after that we don’t hear about the victims. I will tell what happened to me, how I reacted to the abuse, and the lasting trauma that might have gone unnoticed to many.

 The case in the link had a better ending than most. The main abuser was arrested (but only got 30 days in jail) and the victim was not criminalized. There are things that we don’t know though.

We don’t know about the other times this kind of abuse happened. The family believes the one time captured in video wasn’t the only one. I am certain it wasn’t. It is NEVER only one time.

We don’t know how the Autistic student is coping with being in school today. The article shows that he was reacting “violently” months after the incident. How is he now? How does he react to stressful situations and how do people react to his reactions?

We don’t know if he internalized the message that if he does not immediately comply with people in position of power, even if his body cannot respond in the way others believe is the right way, he deserves to be assaulted. 

If that student is like me, he might have become passive when facing abuse.

 As a student, from very young until I was a teenager, I was beaten, grabbed, pushed, slapped by people who were supposed to help me, to teach me. I didn’t react in any way that could be considered violent. I rarely cried. I wasn’t living with my parents when most of these abuses happened, so sometimes they didn’t know. Sometimes I was the only one, besides the abuser, who knew.

I don’t remember the first time I was abused but that’s when I developed my own “defense mechanism”, which never protected me, but was the only thing I thought I could control.

I internalized all the things people were saying I was – bad, retarded, idiot, moron, not worthy of their time, disgusting – as they hit me.


I started believing I was all that, and I began to expect the abuse from everyone. 

My reaction when I met new people (as aides, therapists, teachers) was one of defiance. Not because I wanted them to see me, understand me and respect my way of being. I wasn’t defying them as I might do today – now that I have the supports I need to speak out. 

The defiance of a first encounter was one of total no cooperation. I refused to do what was expected of me. People used to say that I was “testing” the new person and, in a way, I was. I wanted to know if I was going to be hit right away. I was attempting to control when I was going to be abused.

I defied with a smile. I was uncooperative, but in a passive way. I smiled because I hoped to be seen as a person, a human being. I smiled a smile of fear.

Even when the people around me were initially patient and understanding, the usual “good people doing good things”, they would sometimes seem to be too close to hitting me. This made me fear them, so I smiled.

Sometimes they would lose their patience AND hit, push me, yell slurs at me. This made me fear them, so I smiled.

The smile didn’t work much. Sometimes it made things worse. But I still smiled.

Sometimes my face didn’t show any reaction. The pushing, the grabbing, the hitting would come with their “frustrations” at my lack of facial expression, because I wasn’t showing how terrified I was, how terrified they wanted me to be.

My self-worth was shattered and I still have this trauma inside of me.

Nobody saw what the abuse did to me during the time it happened. Very few people know about the abuse today. The trauma is still inside of me.

Abuse never happens only once. For me, it wasn’t one time. It wasn’t one slap. Sometimes it was only words but the trauma of listening to the same words as I was being abused before made the pain more vivid.

My life as a student wasn’t all pain and abuse. I had happy moments, joyful moments but the trauma was always there. From time to time I even tried to “test” someone to see if I was safe enough with that person, if I wasn’t going to be shoved, or have my hair pulled.

There are too many disabled students being abused in schools, and sometimes the type of abuse is said to be appropriate: restraint, seclusion, even the so-called bear hugs – when so many children don’t like to be touched, this is abuse.

There is a lot of ableist slurs yelled at students – that parents never hear about – that damage the child’s self-esteem.

Disabled students deserve better.

I think about kids like the one in the link, and I hope they are having the supports, and the love they need. I hope they are able to trust at least some people now. 

If they start acting “violently”, there is a greater chance that they will be abused again, with the excuse that they are “out of control”.

If they are like me, they might be smiling and maybe being perceived as defiant, and abused again. Or they might be perceived as not having any trauma at all.

I tell my story so that people can start paying attention to disabled students and start questioning the safety of these students.

I tell this story because I don’t want people to feel too comfortable after a child who’s been abused is smiling again. I want people to make sure the smile is one of happiness, not of fear.

I tell this story because I want people to question why disabled students who become “violent” after an abuse are blamed for their abuse.

I want people to learn that abusers need to be punished, and that 30 days in jail is not enough for the life of trauma they inflicted on their victims.

The trauma is real. 
Disabled students deserve better.