Communication, Interaction, and Autism Acceptance
If you've read enough of my writings, you know that I am an activist for the rights of all people - especially Autistic people - to communicate using whatever method it works for each individual. Communication and Autism Acceptance Everybody communicates. Communication doesn't need spoken words. Communication doesn't need words at all. Behavior is communication. Smiles, looks, our bodies - those are used for communication and they are as valid as any word. I can type, and I like to type. Even if typing is exhausting, I still use this method to speak out. Interaction and Autism Acceptance But I
Autism Awareness Month Awareness
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
Intelligence Is an Ableist Concept
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".
Living My Disabled Life: My Story Is Mine to Tell Part 3
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
Love, Respect and “Autism Parents”: My Story Is Mine to Tell Part 2
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
Autism: My Story Is Mine to Tell
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
Proudly Autistic by Amy Sequenzia
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
I Resist by Amy Sequenzia
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
When Disabled Students Are Abused
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 Criminalization of Disabled Students
This is the first of a series of posts about trauma due to criminalization of disabled students by Amy Sequenzia. The Trauma Is Real Everyone has heard of the school-to-prison pipeline. It is the system that criminalizes students' minor infractions of school rules. It is the result of "zero tolerance" policies, of the presence of cops (School Resource Officers - SRO) in schools. It has become so extreme that a student kicking a trash can, due to frustration, can lead to a criminal record, detention in a juvenile facility and criminal charges instead of a school disciplinary action, like after
Autistic, Non-Speaking, and “Intelligent”
Autistic, Non-Speaking, and "Intelligent" by Amy Sequenzia "Being Autistic is not the same as being intellectually disabled". "Non-speaking Autistics are intelligent". "When non-speaking Autistics learn how to type they can ‘prove’ their intelligence'". All the statements above are true. They are also incomplete. Statements like these are assumptions that do not help in making the world more respectful of all disabled people. They are incomplete because some non-speaking Autistics might also be intellectually disabled; Because some Autistic people might be Autistic AND intellectually disabled; Because while some typists are able to show that the assumptions about their IQ were
The Gymnastics of Person First Language
by Amy Sequenzia This post is about Person First Language and autism. Another title for this post could be: "Disability Language, and "Gymnastics". Some might find part of it funny, but I am not kidding. I wrote about why I believe Person First Language (PFL) is ableist, and how individual choices should be respected - the "individual" being the disabled person. Person First Language and Autism Most independent-thinking Autistic adults prefer Identity First Language (IFL). Some use Person First Language and their choice should be respected. This post is directed to non-autistics, to the media, and to autism advocacy organizations
Universal Design and Disability Acceptance
by Amy Sequenzia Universal Design If you are reading this, you probably should know that inclusion of disabled students, with the supports they need, is beneficial to all students. Universal Design is a thing. It means one builds things, and creates products that are accessible to all. It can also be used in classrooms, making sure all students have access to the same education, accommodating individual needs in a flexible environment. The idea of Universal Design is not about kindness, or about compliance with the ADA. It is about common sense. When more people participate, everyone wins because human beings
Disability, Safety, and Value
Disability, Safety, and Value by Amy Sequenzia This post will mention the attitude of some parents. This post is not about love or wanting the best for a child. It is about being conscious that ableism exists, and that you might be, even if unwillingly, contributing to the systemic ableism in our society (I urge you to read the links. Click on the highlighted words throughout the post). I am a very disabled non-speaking Autistic woman. I need many supports. Many of you already know that. Some of you also know that the supports I needed throughout my life weren't
Communication and “Autism Specialists”
by Amy Sequenzia From time to time I find myself writing about typed communication, and how Autistic typists are devalued by "autism specialists". There is a very vocal group of people - the "autism experts" or “autism specialists” - who refuse to accept that we can feel human feelings, that we can think complex thoughts, that we are people. "Autism Experts" and "Autism Specialists” Many, if not most of them are behaviorists, the ones who believe that everyone should strive to look as neurotypical as possible, and act as neurotypical as possible to have any value as human beings. They refuse
Epilepsy, And Living Epileptic
Epilepsy I am writing this as, partly, a rant. I don't want pity, and I don't feel sorry for myself. If you think you need to “feel” something, feel anger at the lack of funding on research that can actually save lives, the lack of understanding about what epilepsy is, the lack of accessibility, and the stigma. feel anger at the lack of funding on research that can actually save lives, the lack of understanding about what epilepsy is, the lack of accessibility, and the stigma Epilepsy is Complicated Epilepsy is complicated. It affects people in so many
Disability, Dignity and Cost
Disability, Dignity and "Cost" by Amy Sequenzia Warning: I am going to mention "Right to Die With Dignity" legislation, my position, and other non black-and-white issues. I am against legislation that states the "dignity" of a terminally ill person should be a reason for euthanasia. I am not going to say that each person does not have the right to refuse treatment when all medical options have been exhausted and they will not survive the illness. Some illnesses, when the end is near, can be very painful. That's why I don't support legislation allowing euthanasia. Pain management is an option.
Disabled TV Character and Positive Outcomes
One Person At A Time I wrote about this before but I want to emphasize a few points. I am talking about the effect of television, or any media, on how disabilities, and disabled people, are perceived by the non-disabled world. Specifically, I want to emphasize the - hopefully - positive effects of one TV show on its fans' views on disability and disabled lives. The show is X Company and this article contains spoilers. I will talk, again, about the character "Ulli". Quick recap: Ulli was a young boy with Down Syndrome, being kept as a secret by his
Why Disabled People Write About Ableism
Are You Paying Attention When Disabled People Write about Ableism? When I, and other disabled people write about ableism, we don't do it because we like the topic. We do it because we DON’T like it but experience it every day. We do it because we are protesting the many ways we are objectified, dismissed, ignored and dehumanized. I don't speak for all disabled people but I believe most would agree with my statement above. Forms of Ableism There are very obvious forms of ableism, from inaccessibility, to inspiration porn, to denial of rights. There is also the ableism
Autism Awareness and May Flowers
Autism "Awareness" and May Flowers This is my THANK YOU to all who lived through yet another April with Autism Awareness, the bewareness and woes. It’s May now. My garden is blooming because you were there with me. May Flowers It is said that April showers Bring May flowers What does April ableist rain Bring to my life's garden? I see weeds of compliance, I see rocks of hate Thrown through the glass of my greenhouse Scattered shards cutting, Hurting the leaves struggling to breathe The ground covered with trash Left behind by the Vandals For
Disability Awareness Bewareness
Amy Sequenzia on Disability Awareness campaigns that silence the very people they claim to advocate for. I Am Aware of You I am aware of you Of your dismissiveness Of your hostility Of your badly disguised contempt You say you do all that Because it is a much needed First step A first step Towards acceptance, you say But we need to change our ways first A first step Towards better services, you say As long as not-us are served first You claim to speak for some of us The ones you call trapped Voiceless Severely damaged But
Parents, Are You Listening To Your Child?
As a non-speaking Autistic, I pay special attention to comments and statements made by parents of other non-speaking Autistics, especially children. Many times I see parents lamenting that they will never listen to their Autistic child say "I love you", or how much they long to hear those words.
Normalcy is an Ableist Concept
by Amy Sequenzia Ableism: we know it is everywhere and we know it is the reason why disabled people fight the normative society that chooses to make us invisible. The idea that we should try to fit a pre-determined, arbitrary way of doing things excludes disabled people by default. We are often ignored, many times abused, used as props for inspiration porn, and generally left out - unless we change how we do things, unless non-disabled people feel at least a little comfortable in our presence. Despite laws and general common sense, any accommodations necessary to make a little
Person First Language and Ableism
by Amy Sequenzia If you are not Disabled and you are demanding the use of Person First Language (PFL), you are being ableist. If you are Disabled and you are demanding that other Disabled people use Person First Language, you are being ableist. If you are Disabled and want to use Person First Language when referring to yourself, I will respect that. I will also respect your right to demand that other people use Person First Language when referring to you. But the Person First Language concept is ableist, and I can tell you why. I do know the
Disability History and Pop Culture
X Company is respectfully educating viewers about the ableism, discrimination and elimination of disabled people during the war. Hopefully, it will make more people aware of how disabled people are still discriminated against and abused in unthinkable ways.
Privacy Versus Popularity
Your child's disability is not about you. Your child’s disability is not your story to tell. If you do it in public at your child’s expense, you are not doing your job, which is parenting. - Amy Sequenzia on Ollibean By Amy Sequenzia The title could also be: Privacy of Disabled Children versus Popularity of Parents of Disabled Children. Which one is more important? The answer is clear to me. As I wrote before, a child's disability is not about the parents. Neither is the disability something the child has done to the parents. I know many parents
Disability, Ableism, and Assumptions
by Amy Sequenzia The title of this article probably isn't about what you think it is. This title refers to a couple of events that made me think about how we should never assume that ableism is something pervasive only in non-disabled circles. I am talking about more than internalized ableism, the need some disabled people have to distance themselves from disabled people they consider not worthy of any respect. I am talking about ableism that easily resembles, sometimes becomes, hate. I recently experienced this kind of ableism. It was hurtful, and it got worse than I described in
Bigots
Bigots don’t have to right to demand “proof” of my competence, especially when they are dismissing my humanity by talking about me, without me. I demand respect.
Disabled Lives and Respect
I thought I wouldn't write about this case . I've been following it and the developments have been a sad reminder that disabled people are, in 2015, still seen, talked about and treated as less than human. Emily Brooks has been writing about it and her analysis is so comprehensive, I don't have much to add. But the rhetoric used by people involved in the case is making my heart hurt. If you don't know about it, you can read the articles linked above and here . I will not talk about Anna Stubblefield, if she raped an adult
Assumptions and Ableism
I've recently read an article about how some researches are slowly starting to debunk long held assumptions about autism, Autistics, functioning labels, and how the world needs to provide more appropriate education to “all” Autistics. This is a quote from a researcher (Laurent Mottron): "Early childhood interventions should focus on harnessing strengths, rather than erasing the difference between autistic children and neurotypical kids" Of course, Actually Autistic people have been saying this forever. We have been warning parents about the damages caused by "therapies" that seek to train Autistics to make us look "indistinguishable from our peers” for a long
Privacy, and Parental Behavior
I've written about this before: parents of Autistic children sharing very private information about their kids, sharing moments that show the kids being upset, or having meltdowns. These parents share everything publicly, using pictures and videos, the children's real names, even if the children are adults. Some say that they are trying to help other families, by showing the "real face of autism". These are the "martyr parents". Others are very angry "at autism" and say they are doing what any parent who loves their children would do: “fight autism”. These parents call themselves "warriors". Still
On Not Being “Pretty”
My friend Cara wrote this awesome article about being "ugly" disabled. You should click on the link and read it. Go on, I'll wait. Isn't it great? The article got me thinking. Like Cara, I also have cerebral palsy. I sometimes use a transport wheelchair because I have poor balance and I can't stand for too long. When I sit down, my body "flops", or it slowly leans to my right side until I am almost lying down. When it doesn't lean to the side, it tends to relax too much, sliding down the chair. An upright position
Accommodations – They Make All The Difference
Accommodations are important and they work. I should not be making a big deal about it. The ADA is 25 years old. Sadly, getting the accommodations we, disable people need, is often the opposite of simple. If you have been reading my posts, you know that I am very visibly disabled. I am also proud, and I don't try to be someone other than myself. I do require a lot of supports, and once I have them, I can do anything I set up as goals. I have goals, or simply things I want to do, that most people
Ableism and Pity. Reject Them, Be Awesome
I have written about how I had to unlearn ableism. I have written about my uncooperative body. I always state how generally happy I am, and that I am comfortable being me. All this is true but frustration shows up, and grows, every time I meet ableism. I meet ableism a lot. Ableism brought forth by pity. Pity directed at me by people who seem to believe I am “trapped” inside my body, that I suffer, or that my life is so hard, they can’t understand how I can even have goals and aspirations.
Inspired? What Are You Going To Do Now?
You have heard it before. You may have said it. "You are such an inspiration!" "(Person's name) is so inspiring!" I have heard it, and I have been the one supposedly “inspiring” people. And I very much dislike it. Disabled people are usually the main subject of what is known as "inspiration porn". We move a finger while disabled, we inspire. If we can't move, but we open our eyes, we inspire. We use technology to live, we inspire. We wake up and enjoy life, we inspire. We smile, we inspire. We breathe, we inspire.
OLLIBEAN : Acceptance, Love, Self-Care: #AutismPositivity2015
Autism Positivity is coming out of April stronger. Tired A little frustrated Spoonless. But stronger. Autism Positivity is rejecting blue lights, casting a red shadow and obscuring the blue puzzle pieces of hate. We continue our #WalkInRed call to action, we are joined by accepting friends, old and new. As Elvis Costello has been singing for decades, even the Angels want to wear the red shoes. Acceptance, Love (and the Angels wearing red shoes) = Positivity Autism Positivity is reclaiming words used to devalue us, and giving them their true meaning. Defiant: standing for what we believe in and for
Synesthesia
Synesthesia I am a synesthete. I see colors and movement to music – to all sounds, actually but music makes everything prettier. I also see words, I can feel them. My synesthetic experience has always been beautiful but I never paid extra attention to it. The colors, the movements and the feelings have always been there. Recently, I have been expanding my musical experience, and I am enjoying it greatly. I am paying more attention to what I see, to what I feel. It is hard to explain. I wish I could paint it, but I can’t. So I wrote
Being Comfortable In My Skin
When I shared my post "Celebrating My Life" one commenter pointed out that “very few people are as comfortable in their skins” as I am. This got me thinking about what makes it possible for me to not only be ok being me, but to be proud of who I am. What makes me an unapologetic, unabashed, proud disabled woman? According to followers of the medical model of disability – most doctors and all the self-proclaimed “experts” – I have a long list of “devastating”, “severe” and even tragic deficits and impairments. Their “deficits list” would look like this: Non-speaking
Celebrating My Life
Celebrating My Life Amy Sequenzia won't stop celebrating her autistic, disabled life. le I am writing this prompted by something John Elder Robison (I will refer to him by his initials, JER) wrote about Autism Awareness/Acceptance Month, in particular this quote: “We may have gifts too, but disability remains the basis for diagnosis. Some autistic people are rendered non-speaking by their condition, and I can’t imagine who would celebrate that. Others live with significant medical complications like epilepsy. I’ve yet to meet anyone who celebrates that either.” I commented that JER does not have to “imagine”. I am here, I celebrate being non-speaking, I celebrate
I Don’t Want Your Awareness
I don’t want Autism Awareness. Actually, I fear Autism Awareness because it only makes the world fear, hate and ignore us, one blue light, one puzzle piece at a time.
Uncontainable Presence
You are anywhere You are anytime Daring and enticing Changes unexpectedly predictable The obstinate constant I see your bright presence Piercing my eyes Crawling into my brain The pain comes swiftly And then, the deafening silence My body shakes in your presence Uncontrollable moves A dance of two wills The music is mute Rhythmically disordered Darkness and pain I'm lost in a sea of dread Forlorn as you carefully exit Leaving behind misery I tremble as the silence roars As the pummeling beat of you presence leaves The sky cracks open in blue A blissful fatigue Exhausted excitement But your
Being
My life through the years I've been listening to this It's enough to bring out tears I need it to immediately cease. They talk about my existence About my right to be I'm running out of patience I know who I am, I am me. Cure, treat, fix, change Words that hurt deep in my soul If I do all that they demand My essence is lost, nowhere to go. They know what to say to scare They do this intentionally But now it is my turn to dare I'm not backing down silently Not backing
#AutismSpeaks10 – Time to Shut Up
Autism Speaks asked us to tell how our lives have been touched by the organization’s “advocacy”. Autism Speaks should have known better. The party belongs to Autistics now.
Drop, Settle + Train
The Supreme Court has a case that affects all disabled people, and the decision can be very damaging for us. We need to trust the police, and the police must “Connect, Respect, Protect” disabled people as they do with all people, not command, advance, hurt , kill.
Talking to Autism “Advocacy” Organizations
I had the opportunity to speak, as a public comment, during a meeting of the Autism Society, Florida Chapter. It applies mostly to the National leadership because I think it is past time for some things to change. What I said might not have pleased everyone, and it might have made some angry. But I stand by the words - compliance is not my goal. It needed to be said though, not only to the Autism Society but to all organizations that say they “advocate” for autism. If an organization wants to help, it should not advocate for things Autistics
#FreeNeli
by Amy Sequenzia Reginald "Neli" Latson was an 18 year-old Autistic high school student, a good student, a wrestler, when he was arrested while waiting for the library he often visited to open. Neli was, as teen fashion dictates, wearing a hoodie. He is black, and as bigotry, discrimination and ignorance dictate, he was profiled and reported as a criminal, "possibly carrying a gun". He did not "comply" with the officer who approached him, already with baseless suspicion, since there was no gun. An altercation sent Neli to jail, trial and prison. He served his time, and
Why I Don’t Like “Awareness”
Awareness campaigns of disabilities are only effective if they are planned and run primarily by the groups that are the subjects of the campaign. This is because such campaigns are not “awareness”, but “acceptance” campaigns. We welcome support, with focus on respect, equality and access. We don’t need “awareness” of deficits and tragic rhetoric.
Attitudes – Information and Education
This is especially directed at parents, family members and all who spend a lot of time with disabled children. It also applies to adults, even if the way things happen when an adult is diagnosed or needs supports are different from how they happen with children. But we, disabled adults, also deserve to have supportive and informed people assisting us in navigating and participating in the world. When a child is diagnosed with a disability, or born disabled, it is said that parents, and family members, grieve. That's probably because the general perception of any disability is a negative one.
Attitudes – Grading People
Parents and family of disabled people should start demanding that everyone who is part of their children lives stops using functioning labels. We don’t need to be graded. We already have value.
Attitudes – Communication
Communication is not only speaking, typing, texting or signing. Communication is also being able to listen and understand, being accommodated to make interaction possible.
Attitudes – Introduction
When you are disabled there is a lot going against you. Not that disability is the worst thing someone can experience. It is not. Disability can be hard and some things can be very difficult to deal with. Some of us need medication and managing this can be difficult; some of us experience pain and this can be energy draining; others might have trouble with sensory processing; some might even need hospitalization from time to time. Different disabilities require different approaches, and different types of accommodations. What non-disabled people should remember is that we either learn how to live as
I Don’t Want Your “Protection”
This is for the people I refer to as "the FC police", or as someone once said, "the sheriffs".I don't want you coming to my life to "make sure" the words I type are mine, or that my facilitators are "honest". You can't because you don't know me, or my journey. All you say only shows how incompetent you believe I am, how helpless and without determination you think I am.It also sounds self-righteous and bullish, your stories and studies from long ago that prove nothing, that don't have anything to do with my life, my difficulties, my accomplishments
@sesameworkshop This Autistic Wants to Say
Today we #EducateSesame and ask Sesame Workshop to listen to Autistics, to respond to our concerns and to end their partnership with Autism Speaks.
Autistic Pride
I am proud of being Autistic And of my Autistic friends I am proud of young Autistics Who have Autistic pride They amaze me I am proud of young Autistics Who are discovering themselves They are learning to understand the world Through creative Autistic eyes They make me smile Young Autistics showering us with love Bonding, sharing, exploring and laughing With words, gestures and looks Their Autistic selves leading the way They lead their own way Henry stands up for his right to be We follow his lead and stand with him He teaches the meaning of never giving up
Henry
Some call him a kid Others say he is a young man But whatever you call him You need to know this: He is courageous Brave and resilient He will fight and he will win It can be a fight for his rights When enemies come disguised as condescension It can be a fight for his dreams He will mobilize an army of friends To Stand With Him He is an example to many He showed other students the possibilities Henry does not fight for himself He is changing perceptions, changing the world Henry is a leader
Young Autistics Making Me Happy – Expressions of PosAutivity: #AutismPositivity2014
This poem is for my young friends: Evie, Ty, Max, Fallon, Mu, Jack, Emma, H., Philip, Oliver, Brooke, Henry, Miri, Cody, MissG, MasterL, and many others I cannot name here but I know are going to grow up to change the conversation. You make me very happy!
Sesame Street, This is an Autistic Speaking
Sesame Street knew nobody was missing, or lacking, anything. I was perfect! Everyone is perfect! But in real life, as I grew older, doctors and teachers convinced everyone that I was too broken to be worthy of any effort toward education and a future. Nobody saw me the way I was seen by my friends at Sesame Street.
What Good Does Autism Awareness Do? It Doesn’t
I know most people want to do the right thing and believe “Autism Awareness” helps. But it doesn’t and it is time for some blunt truths, it is past time to stop walking in circles and move forward with Autism Acceptance.
Stop Combating Me – Why I Am Against Euthanasia
Today is “Stop Combating Me” flashblog. We are not the enemy but the way legislation is written puts us in real danger.
Being Disabled and in the Hospital
Being disabled and in hospitals is always scary because our lives is not valued as the lives of non-disabled. I was, in a way, lucky but the policies still need a lot of improvement.
Love, Not Fear
Today is “Love, Not Fear” flashblog. We write about the beauty of being, living, sharing and experience Autism, an Autistic life.
A Message to Suzanne Wright and Autism Speaks
I will soon write about posAutive messages but I had to write this first. I know my rights and I will fight against oppression at the same time that I spread the messages of acceptance and respect.
Walk In My Shoes
I want you to walk in my shoes Not because I want you to feel what it means To be disabled But because I want you to understand How it feels to be excluded I would like to see you walk in my shoes Not because I need your pity I don’t need it I don’t want it I want you to experience The uselessness of feeling pity for others Like me I would like to see you walk in my shoes And experience what I feel When my rights are denied When I am silenced Ignored Mocked Bullied Abused
Hopes
I might be too optimistic for the reality, but I need HOPE to be able to keep demanding the rights taken away from me, just because I am me.
Remember
Between my activism and the end of the year celebrations, I want to make time to remember my brothers and sisters that can no longer smile.
Real Consequences
Autism Speaks has been hurting autistics for too long. We are fighting back and we are stronger. It is time to say things like they are. This post is because I feel offended by people defending hateful speech.
This Is Autism by Amy Sequenzia
Today we are flashblogging to counter Autism Speaks’ wrong view of autism. We are showing what autism really is. We speak for ourselves, even if Autism Speaks refuses to listen. The rest of the world will.
Autistics Speaking Day – My Fingers Speak
Today is Autistics Speaking Day, a day to remind the world that we actually speak every day, even if we do it with our fingers.
How It Helps
I wrote about Presumption of Competence before, and how it is important for all of us. This time I write about how it feels and how my life changed because I was assumed to be competent.
Open Letter To Jon Stewart
When I met Jon Stewart I was very disappointed by his lack of knowledge and sensitivity toward autism. During a recent interview, while still a bit condescending, his views seem to have evolved. This is my open letter to him.
More Problems With Functioning Labels
Every now and then my autistic friends and I have to explain why functioning labels are not helpful, why it works against acceptance, why it is something created by non-disabled people who knew very little about how autistic brains work, who saw autistics as lesser people, and who saw the need to grade us in order to apply their wrong assumptions in an attempt to "fix" us. To them, "high-functioning” autistics were "better", easy to deal with. The "low-functioning” autistics required a lot more work because their lives was "misery". That's the first problem: lack of understanding of autism, leading
Dear Issy
You don't know me but I have seen your pictures. You don't know me but I know parts of your story. Soon you will wake up and a lot will have changed. You will be in a hospital because your mother did something terrible to you. I know you love your mom and things are going to be very confusing because people are going to say things that will not make sense. And you will not be able to see or talk to your mom. This is a good thing, and you will understand it later. But I don’t want
Again, We Mourn
My soul hurts and I am naming names. And I am saying, if you have a drop of sympathy for the murderers, or almost murderers, you have blood on your hands too.
The Reality Behind Those Walls
The Judge Rotenberg Center is recruiting disabled students in the Midwest to be legally tortured with electric shocks. Help us stop this inhumane treatment of disabled people.
I Fall and I Rise Again
My life is in constant motion So different from a few years ago Back then I could not easily climb The wobbly ladders put in front of me I would rise and immediately fall Today I fall, I fall and I rise again The wobbly ladder still there I found my way around it I see words guiding my way I find hands that support my journey No longer I rise and fall I fall and I rise again My life like the ladder Not always in firm ground But friends won't let me down They will reach out and
Being Where I Can Simply Be
After a three-day conference, I needed to sleep. I needed to sleep because I was dreamy, trying to keep the feeling of being in a place where I can be myself and also be a little bit like a star. Also, building community.
The Presumption of Competence
Presumption of competence is more than an abstract idea. It has real and concrete effects. Here is one: it is better than a makeover.
Because I Stood With Henry
Because I stood with Henry I am happier today and you should too. Henry not only got his rights, he proved that presumption of competence should be the default for every student.
Untitled
This is not directed at anyone in particular. It is about several people I’ve met throughout my life. I sometimes need to remind myself that being me means following my own agenda and not pleasing the ones who will not be part of my story.
Amy Sequenzia: Does it matter?
Should it matter that some of us are labeled intellectually disabled? Read the definitions, look at us in a realistic way and ask yourself; Does it matter? Aren’t we all worthy?
Mother
This is for every person who embodies the meaning of motherhood. This is for the ones who nurture and protect, who never consider their lives more important than the lives of the ones being nourished, educated, protected and loved.
Standing With Ashley
I stand with Ashley because she is part of our community, she is brave and she survived brutality.I stand with Ashley because I hope to show her, one day, that the joy of belonging to our caring community trumps the memories of pain.
Autism Rights Are Human Rights
Autism Rights are Human Rights Autism Rights are human rights. That’s something every Autistic activist knows. It is printed in t-shirts we wear and it is something we have to keep reminding the world because our rights are violated on a regular basis. We have to fight for the right to be heard, for the right to participate in the conversation about us. Young Autistics have to fight for the right to go to their neighborhood school, with their friends, to learn the same curriculum a non-autistic child learns. That’s why we say that the fight for autism rights
Pain in My Brain
The one thing in my life I would like to cure.
‘Autistic People Are’ by Amy Sequenzia
Autistic People Are Awesome! Autistic People are the real experts on autism. Autistic people are not more complicated than non-autistics. Autistic people are misunderstood and mischaracterized by non-autistics. Autistic people are artistic and we don’t need speech to show our talents. Autistic people are your friends your co-workers your children. Autistic people are parents siblings grandparents. Autistic people are not tragedies we are not burdens. Autistic people are not sufferers because of autism we suffer discrimination from non-autistics. Autistic people are “different but not less”. Autistic people are not “Rain
“Loud Hands – Autistic People, Speaking” A Review
The title of the book should be enough for anyone who wants to know, know more or know anything, about autism and Autistics to buy it and read it.
I Feel Tired
Some parents understand that autism is a natural part of some children’s lives and they fight the societal attitudes toward autistics. That’s love. Some parents don’t, and they fight, and hurt, their own children. This is not love and is one of the things that make me very tired.
When Autistics Grade Other Autistics
“If you judge a fish by its ability to climb a tree…”We know how functioning labels are not helpful, despite being largely used by neurotypicals. But some autistics also grade members of our community and I want to understand why.
I Am Autistic and I Know What Autism Is
Autism is not a set of deficits. Autism is complex and all of us can self-advocate despite the difficulties we might face. Autism is life. I am Autistic, I self-advocate and I am happy.
It is About Respect
Respect for one another is one basic quality if we want to have meaningful conversations and relationships with other human beings. The ableism that disabled people experience is a form of disrespect.
Amy Sequenzia: I Need to Thank Some People
After “Non-speaking, ‘low-functioning’” was published, lots of people wanted to hear from me. I met so many amazing people, autistic bloggers with so much to share and the smartest people I know. Parents of autistic children also valued my words.
Amy Sequenzia: Henry’s Victory
Autistic self advocate and poet, Amy Sequenzia's thoughts on the outcome of young self- advocate, Henry Frost's battle for inclusion in Hillsborough County.
Amy Sequenzia: I, Too, Want to Understand.
Why would a parent of an autistic child decide that it is better not to listen to other autistics? Why? I, Too, Want to Understand.
Amy Sequenzia: To You, Young Autistic Friend
Autistic advocate and poet Amy Sequenzia's message of acceptance and respect for young autistics for 2012 Autistics Speaking Day. "There is nothing wrong with being who you are. You are perfect in your uniqueness."
Supporting Young Autistics
We hope that young autistics today will be proud of themselves and without shame. The message that boy received at that moment was the opposite of acceptance. It was ableist and it came from someone who is part of our own community.
Bureaucrats
You look at me But you don’t see me You talk about me but not to me You think you know all about me But you deny my humanity You think I don’t have wishes You believe I don’t have plans You don’t respect my basic rights According to you I should be grateful That I have a place to sleep That I have three meals a day If I say I want to go out You ignore me To you I am only a burden Too disabled to have an opinion To you I don’t count as a person
I Stand With Henry
What Henry is doing is advocating for his rights, at the same time that he reminds us of our own rights and about how far we still have to go.
A Poem About Pain
Other people have written better articulated articles about the same things I write in this poem. It is hard for me to elaborate beyond the words in the poem. It could have easily been me in some cases, it can happen to any of us.
Amy Sequenzia : Friendship and Respect
It is a mistaken idea that we, autistics, lack empathy. It is also a myth that we are not social. My friends and I, we understand and respect differences. And we understand that we all have a lot to contribute, in a diversity of manners.
Amy Sequenzia: “Storm”
"Storm" a poem by autistic self-advocate Amy Sequenzia.
Change Leader: Amy Sequenzia
"Presume competence. The same way I want people to assume I am competent, I also assume that others are competent".
Amy Sequenzia:Dear Mainstream Media
I am an autistic woman, non-speaking and I have many needs.Yes, dear mainstream media, I am the autistic supposedly too “low-functioning” to deserve to be heard. You pity me and you ignore the facts.
Ollibean Think Tank Member Amy Sequenzia
Amy Sequenzia is a poet and autistic self-advocate. Her writing is as beautiful and powerful as she is. She is an extraordinary voice in the disability rights community .
Amy Sequenzia: “Just Me”
Amy Sequenzia writes about rejecting society's many labels. Perceptions such as “super spectacular” autistic and “low-functioning” are equally harmful .
Amy Sequenzia: Happy to be Myself
Respect, understanding, acceptance.Things that make me happy.Respect, understanding, acceptance. These things make me grow.
Amy Sequenzia: Respect How I Choose to Speak
I type my words because I am non-speaking. One of my disabilities, or one characteristic of my disability, is that my body does not move like my brain wants. That of course, includes my arm. And I use my arm, my hand and my fingers to communicate. I also need the support of someone to help me coordinate and synchronize my brain and my finger. I need to define support. It is the physical support of helping me type slower than my brain works, being able, at the same time, to feel my movement, knowing when to let go, when
Autism Speaks: Time to Listen by Autistic Self-Advocate Amy Sequenzia
Autism Speaks: Time to Listen by Autistic Self-Advocate Amy Sequenzia
Presuming Competence
This issue is very important to me because so many events and breakthroughs in my life happened because I was presumed to be competent. On the other hand, some events in my life were not so good because of a presumption of incompetence. The message of presumption of competence is of encouragement and acceptance. The presumption of incompetence sends a negative message, a message that says no matter how much one tries, success is out of reach. For disabled people, especially the ones who need more support, who can’t communicate through speech or who have other communication difficulties, this negative
Epidemic, Awareness and Us, Autistics
By now everyone knows about the new numbers on autism diagnosis. And we have already seen the media jumping in the alarmist train: IT IS AN EPIDEMIC! My friend and I decided to look up some definitions for this word that has been used to classify me. This is what I found in one on line dictionary: epidemic noun a widespread occurrence of an infectious disease in a community at a particular time: a flu epidemic. a disease occurring in such a way. a sudden, widespread occurrence of a particular undesirable phenomenon: an epidemic of violent crime. Am I a
Lives Not Worth Living : by Amy Sequenzia
The title of this blog is an expression seen in many blogs written by disabilities advocates and self-advocates. Wasn’t his life worth living? Isn’t mine or the lives of all disabled people? The murder of 22 year-old autistic George Hodgins prompted the latest, very strong protests from the autistic community against the media coverage focused on the “reasons” for the killing, while ignoring George’s, the victim, life.
Acceptance
Welcome new Ollibean writer, Amy Sequenzia! We know you're going to love her blog and her poems........ "Accepting myself is an on going process. A few days ago I wrote a poem about acceptance. It is easier for me, sometimes, to write about my life in verses. But after I write about what bothers me in verses and stanzas, I can talk about it in any format. I freed myself when I wrote the poem. In a way, I accepted myself a little more." It is very hard to have confidence in my abilities when all my life, when people
Amy Sequenzia “Be Proud of Who You Are”
"Feeling sorry for our disabilities means not accepting ourselves. I feel sorry because disabilities rights are still lacking, not because I am disabled. My message is, hopefully, about our strength and similarities". Amy Sequenzia
