Tag Archives: autistic people

Citizen’s Vulnerabilities and the Rights of All in this Society

Autistic people have rights just the way everyone has rights to be a leader of their life; Autistic people are thinking the way they want to think and are also human beings too with our own mind. Autistic people have feelings often feeling for others and have feelings that often feel pain by many other people who do not understand us. Autistic people grow up at different paces while others may just grow at the same pace as their physical age. Because many Autistic people grow at different paces, we are often thought of as less than human, deviant from the norm, and due to our impairments many in society look down upon us thinking we do not have a mind of our own nor are we able to make logical decisions about the life we want.

Though, Autistic people are vulnerable, and depending on the impairments, depend on how vulnerable the individual will be. It does not matter if the person is less impaired, they can be more vulnerable. Just because Autistic people are vulnerable does not mean we are not our own person. May be so many do think that way because Autistic people feel so many emotions at once, that at times we either do not know how to use our emotions scaling back inward or use our emotions too much being considered to be over-emotional, rageful, and illogical. Whichever way Autistic people are, we are misunderstood by society as a whole, thus society is misguided in the way everyone should think of Autistic culture and human society in general.

From all of this misunderstandings and misguided ideas from years of a perception that someone with cognitive and sensory impairments is not capable, not competent, some in society are finally learning today. The tragedy of this kind of thinking has created this between Autistic people and the rest of society. There are a lot of people who need to take responsibility for these actions.

Many people before Autism Speaks have contributed to this between Autistic people and the rest of society. Unfortunately, the mainstream mass media has contributed to this as well by conforming to the ideas of this subjective interpretation. Many people are suffering from a society that lacks understanding. This war against Autistic people is really a war against humanity and human nature. The battle to fight for either correcting the genome from disability to embracing the genome and realizing cognitive disabilities like the way Autistic culture is, is something that needs to be accepted just as many other neurodivergences need to be accepted too.

How far do we go to changing the human genome? Is it our right to change the genome that mutates and changes randomly over time? Who gets to say which parts of the genome are bad or not? And, is the human genome really a bad thing as many medical researchers are trying to correct it to make a perfected flawless human being? Is eugenics or genetic counseling really needed?

My feelings as a person who is Neurodivergent from outside the norms of society and as an Autistic person leads me to believe that I often feel like pushing to be who I am while getting pull back from society to make me the same as how others are. The fine line between autonomy and being who we are versus depending on others to conform to the standards of society is enormously thick, yet we need to pull one way and push another to be included in the community. Autism Speaks as an organization has been through a rough war because many people feel their misguided thinking for almost 13 years has been too hurtful to many who feel they want to embrace who they are regardless. This makes me feel that everyone needs to re-think what we have done in the past.

Our society created the mindset of the perfect mind and body back when Francis Galton created the word ‘eugenics’ and the world decided that between Darwin’s evolutionary theory and his cousin, Galton and his creation of the word ‘eugenics’, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust who he thought society could do away with. I am sorry to say, but the world created the way Hitler would eventually think about how the human genome, race, and religion whether we like it or not. We couldn’t control how some people would interpret this thinking even today. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.

Everyone seems to not understand that trying to perfect a human genome is trying to perfect something that is constantly mutating, constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We are human beings so I understand why many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for help. As we are Human beings who live in this world, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless since we all go through the same trials, tribulations, and rewards in life.

Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people made, while others we felt could not make decisions at all and could not think on their own. We need to give everyone the tools to decide and think about what they want in their life on their own. This thinking presumed (and in some ways continues to presume) many people that their decisions are illogical and not right. Making decisions for our life depends on what kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need support from people who can help us choose in making the best decision our life. In the end, the final decision is ours.

Whenever anyone makes a decision, it not only affects us, but it also affects everyone close to us in that decision, and in some ways can affect the rest of society as well. For example, when any one decides that they want to change the way their child is, they are making a conscious decision that will affect the way their child will feel about themselves and toward others as well. These decisions we make affect us individually in many different ways. If a child rebels against their parent’s decision to change who they are, then the child and parents must take responsibility for their actions. Deciding on changing the way a person is, also changes the way everyone feels about themselves. It is important to attribute every decision we make to the way we think about others and ourselves in our life. When we think about who we are as a person, we think about where we came from, and the people in our life that affect what we think. Sometimes what we think can hurt who we are and/or other people.

Autism Speaks may not have been thinking everything through in the past how they are helping Autistic people in society may not be actually helping Autistics in society, but they are learning over time slowly. Every organization has their own agenda to what they think they are doing is right. Yet, everyone and every organization, through medical charity or self-advocacy, cannot know exactly how everyone feels because we all have our thought process and experiences that are different than others.

When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, an individual may choose a different way of living than many other people do on an actual daily basis, but that does not mean that individual is not living a quality life. A quality life is subjective to what an individual actually feels they want in their life. No one can suggest a better quality of life or social skills to make others conform to a society that is not universally designed for everyone. We need to remember who the person is as an individual and how individuality really is what everyone wants as a single mind of their own.

This leads to too much frustration because of a social construction of conformity the mainstream media has used every day. Some people may be more frustrated with who they are than other people because their experiences with how society treated them or how individuals who treated them in the past made them feel particularly unjustified and unaccepted living their life. This responsibility is what everyone needs to fully grasp and think about how to create a unified world with justice.

Everyone has their own way of living while having their pride and joy that makes them feel good about who they are. Everyone does what is right for them, but no one has a right to tell a person that the way they are living is not quality of life. Many times some impairments create situations that make a person feel they cannot function enough and in fact need accessibility and universal design to help them get by or even thrive in society. So, why cannot we create universal design in everything we do in society so that everyone feels that they can live their life the way they know best? Our society has always conformed to the idea that its citizens are vulnerable and need to be corrected to fit in, not in their natural way of living.

The world is a tough place to live in. Autistic people can be vulnerable, everyone is different to the person next to them, and simultaneously we can all be vulnerable to what others are thinking. However, it does not mean as individuals that vulnerability is a weakness. Everyone is an individual who can think on their own. Human culture is defined; all of us think whoever is standing out in that moment yelling their voice the loudest, is the leader. This is not true, we are all leaders of our own life.

In order to think through how to create a less vulnerable society, we can help by providing to strive for universally designing a world that everyone can live in with dignity, respect, getting their voices heard, and able to function with everyone around them no matter what. Everyone can lead their own life whatever way they want to live. We need to do better and we need to ease the pains of so many people, including Autistic and non-autistic alike.

10 ways Non-autistic people tell Autistic people to Pass For Normal is Stigmatizing and Does Not Allow For Authenticity

1) When an Autistic person is told to pass for normal, we are usually told AAC is not allowed to communicate with others. The people we interact with tell us that we must speak through our mouths.
2) When an Autistic person moves differently through ticks and stimming and the way we walk down the street, we are told that we must not do that and in fact must ‘Quiet Hands’.
3) When an Autistic person desires to be by themselves, non-autistic people think it’s weird, unusual, and/or strange making us look like freaks and weirdos.
4) When an Autistic person fulfills a dream of a painting, writing, music, inventions, or other special interests so the world can enjoy something from us, we are often told we are obsessing over things and to enjoy life without thinking.
5) When an Autistic person wants to spend time with animals more than people, we are told to spend more time with people.
6) When an Autistic person prefers to hang out with other Autistics because we feel less pressure to pass we are often told our Autistic friends are too weird.
7) When an Autistic person interacts with non-autistic people, we are told we lack the social skills necessary to interact with them. However, we are often not taught the real social skills (check out the REAL social skills) and often are only taught social skills from a child-like or very basic thing.
8) When an Autistic person is advocating for themselves and the Autistic community, we are often told we are being rebellious, obstinate, or misbehaving.
9) When an Autistic person uses their voice to speak, we are often told to lower our voices or raise our voices. We are never encouraged to use AAC (Augmentative and Assistive Communication devices) unless a non-autistic person truly has trouble understanding the Autistic person. Then, the non-autistic person typically mocks or mimics the Autistic person who uses AAC.
10) All too often Autistic people are mocked or mimicked for being Autistic and used as the ‘joke’ or for ‘comedy’.

By these Non-autistic ways toward Autistic people, we are far too often not allowed to be our authentic selves. Autism is a different way of life, it is a different dialect, different language, different way to move, and different sensory experience. Every Autistic person expresses autism differently. That is the beauty of Autistic culture.

Believe it and hopefully those non-autistic people stop making Autistic people feel too anxious to ‘pass’ for a normal that is too stigmatizing from the medical model. Thus, we are far too often stereotyped as well and for those Autistic people who do try to conform to the normal way from society are far too often objectified or seen as ‘posters of inspiration porn’.

AAC is important to me for communicate like any other Autistic person, but like many others like myself have always been told to ‘pass’ instead.

OUT, J

How to Encourage any Autistic person In Leading Their Own Life

There is a difference between ABA and floor-time, and there is a difference in what we really can do for my Autistic peers and I who need to be able to live self-directed lives. We need to realize how much the autistic spectrum can relate to themselves and how non-autistic people can enter into the Autistic world. Being an Autistic person means so many things, but their are some non-autistic people who still do not get it. However, there are some non-autistic people who do get it.

This post is going to be a list of what non-autistic people can do to help the Autistic community better self-direct our lives:

1) Stop and think before giving advice or direction to an Autistic person when we have not even asked for the advice or direction
2) Teach any Autistic person from the time they are a child that they run their life
3) Makes sure any Autistic person takes responsibilities for what they do from the time they are a child
4) Always include any Autistic person in conversations about them, always remember ‘Nothing About us, without us’.
5) Never demand any Autistic person is doing something wrong and that they have to do it ‘your’ non-autistic way. Let us be who we are!
6) Allow any Autistic person to identify however we choose, not the way any non-autistic person wants from us, i.e. do not instruct person-first pathology language.
7) Autistic people want to stim to help us through our lives, never say ‘Quiet hands’.
8) Never assume any Autistic person who is echolalic does not have a voice, everyone has their own voice with our own thoughts, ideas, and expressions.
9) We are human, we all have free will, we all have free choices, and any Autistic person is able to live inclusively in the community as long as non-autistic people do not tell an Autistic person how to live their life.
10) Don’t assume any Autistic person does not know, we are more capable of understanding things than non-autistic people assume.
11) Autistic people who do have tics, are able to do things too, we have tics, but it does not mean we are anxious.
12) Autistic people have been stigmatized by the society as a whole by so many other cultures in society, do not make assumptions about our abilities or disabilities.
13) Bullying any Autistic person into silence to speak the way non-autistic people speak is taking away the rights every one in the human race has.
14) Social skills is a human experience everyone learns about each day, so stop insisting Autistic people need to learn social skills from a non-autistic person. Every one needs to learn the real social skills, not the gibberish that is taught to Autistic people every day. (no one is a social skills expert)
15) Autistic people need to know we can set our own boundaries and are taught that everyone has their own space from childhood to becoming an adult.
16) Stop harping and hovering over any Autistic person’s daily life and allow any one to make mistakes. If it feels good to an Autistic person, than work with that so that it works well in society even when an Autistic person who has sensory differences from non-autistic people in society.
17) Do not label any one with how they function, who is it to you as a non-autistic person to label any one as ‘low’ or ‘high’ functioning? Functioning labels are a way to stigmatize and hurt Autistic people.
18) Give us some time for our own life to make our own decisions and preserve self-determination.
19) Being Autistic means we are Human too which means we can decide our own destiny and think critically.
20) Let any Autistic person use AAC (Augmentative and Assistative Communication) when we want to use it to communicate with any one in the community regardless. Communication is key in our life too to allow our voices be heard!

There are probably more, but for now this is good enough!

I know I have not posted in a while, but I have been very busy with my first semester of graduate school at CUNY School of Professional Studies studying Disability studies.

By the way, check out my project from class at the website I created with my classmate, DISQUAKE!!

OUT, J

My Disability and Music paper from “Disability and Embodiment”

The song that was attached to a YouTube video a few years back was recently deleted, but intrigued me. The song tried to lift the barriers that the medical model of disability conveys. The song used was “Individuality” by the U.K. band, Area 7. Some thought provoking words were “The years go by, you find that nothing comes easily. And the world is full of people tryin’ take you down.” This really spoke to me personally as well as who I have interacted with in the disability community especially in the Autistic community. The song really helps us accept our own self since we need to have less self-doubt, less influence from others, and more of our own identity. This song is more about post-structuralist social model of disability because it does not speak about impairments rather about striving to be the best we can be.
To me, the song tries to convey something Jim Sinclair wrote about in his “Don’t Mourn for Us” speech when he wrote, “We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived…But don’t mourn for us.” (Sinclair pg. 9) I feel Jim Sinclair’s quote really compliments this song.
A paper by Steven Van Wolputte, explores several authors in his paper where he reports, “Or, as Mead (1974) notes: We cannot be ourselves unless we are also members…He pointed out that a self is a social structure and process that arises in and from social experience, that it involves the body, and the self – …” (Van Wolputte pg. 261) These words from the article and song reminded me how people like myself in the disability community feel today from non-disabled people in society. I have felt society needs to understand people in the disability community and people who seem different. We are members of society too who need to identify the way we want to be represented. Instead people typically don’t see how disabled people like myself can live full successful lives. We are always made to feel odd and different. These lyrics from the video, immediately made me feel this should be everybody’s anthem while going to school and growing up. In 2nd grade, I met with the school psychologist, who told my mom I would not be able to graduate high school, learn to be my own person, and live a fulfilling successful life.
In an article by Loja, Costa, Hughes, and Menezes, I further determine why the song is so powerful, “[Disabled individuals] confront physical and attitudinal barriers and stereotypes about their capacity for intimacy and configure themselves in ways that challenge centuries of oppression, refusing to internalize ableism, demanding recognition for who they are and what they want to become.” (Loja pg. 198) This empowers me to build my life even through the vast ableism I have faced in my life, and create who I am from all the struggles I have overcome as a part of society.
The song from a post-structuralist social model shows us what being an individual is; “not being so vain, not being so proud, but rising above,” (from Area 7) the intellectual standards society tells us what we can be, to be ourselves. Van Wolputte states, “It is therefore important to distinguish between, on the one hand, the self as an embodied process of self-making, of becoming (the body self), and on the other hand, the socially sanctioned self-image or representational Self.” (Van Wolputte pg. 262) People need to stop and think about the broader scope of humanity and how any one can be an individual.
Even though I didn’t know I was Autistic in 2nd grade, I did know I was disabled, which led me to feel society’s perception of the disabled. We need help and support to fight for our own individuality to build our confidence, and to fight back from society’s perception of disability.

Works Cited

Area 7 – Individuality Lyrics | MetroLyrics http://www.metrolyrics.com/individuality-lyrics-area-7.html

Sinclair, J. (1993). Don’t mourn for us. Our Voice. The newsletter of Autism Network International, 1(3).

Van Wolputte, S. (2004). Hang on to your self: Of bodies, embodiment, and selves. Annual Review of Anthropology, 251-269.

Loja, E., Costa, M. E., Hughes, B., & Menezes, I. (2013). Disability, embodiment and ableism: Stories of resistance. Disability & Society, 28(2), 190-203.

Individuality by Area 7

They always said that you would never be anything.
Everything you tried to do was just a waste of time.
But you believed you could do anything you wanted to.
You made your mind up and you never looked behind.

Don’t let them try to tell you how to live your life.
Don’t let them hold you back, don’t ever change your mind.

Individuality – Be proud of what you are
Individuality – Don’t let them cut you down
You can be whatever you want to be,
But don’t change yourself for society.
Don’t lose your Individuality.

The years go by, you find that nothing comes easily.
And the world is full of people tryin’ take you down.
Don’t ever turn your back on anything you’ve ever been.
You don’t need to prove yourself to anybody else.

There’s no room for second best, no second chance, don’t fail the test,
Gotta rise above the rest, gotta try to make your mark.
You don’t need to be so vain, no need to act so proud,
Follow the trends, don’t ever stand out from the crowd.

Do you really care what other people think about you?
Does it really matter what they do or what they say?
You’ve fought too hard to let them throw it all back in your face.
When their opinion never mattered anyway.

Know your Voice, Know your Identities, Know your supports, and Live a Self-Determined Life

An Open Letter to the many primary and secondary educators as well as the many professionals who try to create tokens to Autistic and other Disabled people who they don’t give proper education to own their identities and opinions,

It’s important to create a better way for the Autistic/Disabled children and adolescents of the future adults of the Disability community and the broader community in the world. It’s important as well to create a system where the adults in the Disability community today finally know their voice and their identities count too. People need to develop their own self without any one especially Non-Autistic/Non-Disabled people influencing them that they can’t do much in society. This leads to many of the children eventually living in group homes like many of the Autistic/Disabled adult peers who struggled with the teachers in the school system as well growing up without a chance to learn.

School is an important project for every child growing up. No one should be denied a proper education because many teachers don’t want to develop more patience and spend more time with their students to get them through 12 years of schooling and go to college. When I watch the amount of people entering into the caretaker world for Autistic/Disabled adults I noticed many of the Non-disabled people who work with them even some parents, don’t preserve self-determination. Sadly, I start realizing how the whole primary and secondary education system pretty much sucks in the United States. I am not just talking about the public schools, but the fact that these children are also going to Residential Treatment program schools as well that really are segregative and do suck!! It’s not even just the Disability community which is denied proper education, but many other cultures of people too who don’t get the education they need. This all leads to mental health issues and addiction.

Many educators seem to only care about the most gifted people who are usually non-Disabled or non-Autistic people to finish high school and go to college. It’s only if any student becomes a good advocate for themselves during public high school that they actually do succeed to lead their own life through college eventually earning a decent living. Instead many Autistic/Disabled people wind up going to Adult day hab centers and group homes because society gave up on them. It is a very sad situation that many of these educators and other professionals do not help my many young peers in the Autistic/Disability community to learn responsibility in order to live a self-determined life.

When these people eventually do go to group homes, day hab, and even work in sheltered workshops earning a dollar an hour in some cases, they are treated like children, and act out like children, always acting out negatively. They are considered to be ‘behavior problems’ in society because no one taught them any better about responsibilities while attending their school years from kindergarten through 12th grade. And yet, most of these people have sensory meltdowns too that were always misunderstood as tantrums instead.

Society graduated many of these people with a IEP diploma which just states that they attended school without earning grades. Moreover, these people are told to learn social skills in adult classes when these types of skills should have been taught in public elementary school with the Non-disabled students. Most of these people can’t read or do not even know what it means to understand what they read, to write an essay, to do simple math, to sign their name, or to even know how they want to represent themselves in society.

Our society created a system where Non-Autistic/Non-Disabled people will speak for many of them in the Disability community no matter what the situation entails including telling the world how they should be identified as. Many of these students in the Disability community are never given real choices because many people do not want them to be educated in school and earn a decent wage that can allow them to have independence too. Their education is pushed away from them while they are pushed to agency businesses to take care of them for the rest of their lives. Yes, many of us in the Disability community do need supports, and sometimes agencies help with these supports, but the supports should be given to us as an accommodation to live a self-determined life. We live in an Interdependent world, none of us are totally independent.

There are some people, but not many who’ve been considered lucky to not let this happen to them. However, luck was more of a determination to advocate for ourselves including some non-verbal self-advocates who fought for their rights for supports and independence. Many reached out and others continue to reach out to advocate against a system that society really pushes many Autistic and other Disabled people into: not having their own voice and identities. It’s important to always educate, teach self-advocacy, teach social skills, and teach that it’s okay to identify ourselves the way any one wants to throughout school and adulthood. Most importantly, it’s important to teach social skills in elementary school as well as teaching sexuality and gender identities to everyone no matter if the student is disabled or not. Society is so afraid of teaching any one who is not the so-called normal person in society.

We are all gifted, we can all live our life the way we want and need to, and we can all learn to be responsible self-determined adults with the supports we need along the way. Society needs to accommodate the Disability community with the many sensory and physical things that we need to be accommodated for so that we can live our life like any other person can. In the professional world, Social Workers read in their code of ethics about self-determination all the time, but many Social Workers do not practice this code of ethics unless it is to get a Autistic/Disabled person to obtain their benefits from society as a whole. Benefits are good and are needed for us including myself, but self-determination must always be preserved too. There needs to be balance between the benefits the Disability community receives or will receive, and self-determination.

When society sees a person like myself advocating for myself and working toward my goals of self-determination, they only want to create a token so that this person will speak like Non-Disabled people yet will still be considered Disabled by society. If society wants to really listen to the Disability community, they will need to allow us to speak our minds the way we feel and want to represent ourselves with our identities. It is unfair for the Disability community and most importantly it is an unfair education system for the many people who have been and are in the elementary and secondary school systems. It’s probably why bullying persists in our schools. Society needs to change. Society needs to create an education system where everyone has a chance to live a decent life and learn the responsibilities to live our lives eventually with wages that aren’t sub-minimum.

Don’t wait until they become adults because then it may already be too late! Please do all you can to educate everyone no matter who they are. We need to make the United States better than it is right now. For those educators who have begun this already, I say thank you to you, but help me create any teacher in every school to maintain any student to live their adult life with supports and self-determination.

A few people have tried to make me a token in the past, but it’s important to fight for our own voice to be heard not to be a token. I teach self-advocacy at a part time job, and will continue to teach these basic self-advocacy skills so everyone eventually will know their voice, their own opinions, and their own identities which will always be cherished.

Thank you for reading and hope everyone understands what I say!

OUT, J