Tag Archives: universal design

Citizen’s Vulnerabilities and the Rights of All in this Society – Part 3 of 3

J in front of B and H in NYC with a mask wears a tye dye shirt which reads 3E Love with a heart shaped wheelchair. Embrace, Empower, Educate.

Medical charity and self-advocacy organizations have always been at odds with interpreting disability with each other. Medical charity has always interpreted disability with the ideas of guardianship and fixing or conforming. Self-Advocacy organizations take a different approach. They teach the ideas of supported decision making based on self-determination, self-direction, and interdependence. I have been through conflicts between medical charity and self-advocacy as some of you may have also through the differences in philosophy. It’s really ‘Nothing about us, without us’ which is what I believe. 

When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, when I choose a different way of living from others, it does not mean it’s not a quality life.  If I choose to move out, then that’s my choice. A quality life is subjective to what an individual actually feels they want in their life or need at the time. No one can suggest a better quality of life or social skills to make others conform. People who interact with me need to remember who I am as an individual and how individuality really is what everyone wants.

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 treated them in the past made them feel particularly unjustified and unaccepted living their life. I have been an example of this. This responsibility is not only what I need to be accountable for, but also what many who interact with me need to do as well. Conformity is also nonconformity that some may not fully take into account. 

Many people have their own way of living while having their pride that makes them feel good about who they are. I can do what is right for me, and anyone who interacts with me has to know we can’t enforce our influences.  Universal design is important in this way! Why can’t 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 including myself can be vulnerable, we are all different from each other, and simultaneously we can all be vulnerable to what others are thinking including non autistic people.  However, it does not mean as individuals that vulnerability is a weakness. Human culture is defined; all of us think whoever is standing out in the moment yelling the loudest, is the leader. This is not true, we are all leaders of our own life. It’s called self-direction.

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 being able to function with everyone around them no matter what. Any one can lead their life however they want. We need to do better and we need to ease the pains of so many people, including Autistic and non-autistic alike.

A Poem Called “Passing”

Passing,

by theamazinJ

It’s a struggle,
I pass or at least try to pass,
It’s a struggle,
I am from autistic culture,
my mind sees all sorts of things
in this world,
my body moves in all different ways,
my voice box is different and monolithic,
my speech is radiant and unique,
my words become silent from misunderstanding,
my life is a constant battle to pass in society.
My speech speaks with very few listeners,
my movements paint with very easy ease,
my life is a constant battle to please everyone to pass,
did Frederick Douglass want to pass for the white man?
did Rosa Parks want to pass for the white woman?
Did Mozart care about what others thought when making music?
Did Andy Warhol care about what others thought of his art?
Did Andy Kaufman care about what his critics thought of his comedy?
Does Bill Gates care about what others think of what he wants to do for the world?
Does Hillary Clinton really care what anyone thinks of her?
Autistic culture is different from non-autistic culture,
disability culture is different than living without disabilities in the able-bodied culture,
black culture is different from white culture,
jewish culture is different from christian culture,
muslim culture is different from jewish and christian culture,
witch culture and other polytheistic cultures are different than monotheism,
LGBT culture is different than heterosexual culture,
females are different than males which are both different than other genders,
the binary system is broader than one would actually think,
the binary gender, the binary able-bodied culture, the binary religion,
the monolithic sexuality, the way everyone thinks is black and white.
everyone feels, thinks, speaks, and moves differently,
we need to respect each other for who we are all born as,
and we need to respect the way we all move in the world.
Yet, black and white thinking is among us all,
it’s among everyone who feels everyone in the world needs to pass
rather than be the other, rather than be a person who is who they are,
It’s fighting for the rights of people with disabilities to live our life
the way we are and fighting for universal design for inclusion in the world,
It’s fighting for black culture, indigenous culture, other people of color, muslims, Jews, polytheistic religions, and women
to be able to live life experiencing whatever way they are and whatever way they see the world,
because universal design is not just for disability culture,
it’s for everyone to live inclusively together,
without the social construction created hundreds of years ago,
living life with a more different unique social construction embedded with individual human nature
and understanding of each other,
passing is difficult for many,
passing is difficult when we cannot be accepted and respected the way we are,
the broader human culture needs to understand each other,
the broader human culture needs to accept each other,
and the broader human culture is a part of neurodivergent culture
as well as part of the culture of the norm,
if we are truly going to live a neurodiverse culture
than we need to be accepting when someone chooses to pass for norm or chooses their neurodivergence,
choosing to be whoever and whatever their brain is like in speaking, moving, and thinking with their bodies,
we choose everything by and for ourselves, we choose what we want to accept, we choose what we even want to do everyday,
the most important thing is:
We choose how we feel about ourselves and what we think of ourselves
because in the end,
it’s our choices that create us,
it’s our choices that allow us to think binary or not,
it’s our choices to accept others or not,
it’s our choices to respect everyone or not,
it’s our choices to create a new social order or continue the binary social construction
that has been around for hundreds of years,
it’s our choices to move forward in evolution or just pass,
it’s our choice to live or to die,
and it’s our choice to be the person we are by fate or by destiny of who we individually strive for
with respecting everyone.

A Poem Called “The Institution of ‘Trump'”

Trigger Warning: Please read with caution. Trump is created bad ideas and this poem may trigger many. Do please read with caution.

The Institution of ‘Trump’,

by theamazinJ

Trump, Trumponian Era is beginning soon,
the dark ages is beginning way too soon once again,
the ages of ignorance, the ages of backwards history,
an ages of no civil rights laws for everyone
is the beginning of Trumponian Era.
A scary time for me, a scary time for you,
and a scary time for everyone.
It’s going to be scary because
a age of ableism,
a age of racism,
a age of misogyny,
a age of heterosexism,
a age of transphobia,
a age of binary gender,
a age of anti-semitism,
a age of islamophobia,
a age of institutional thinking
for any one who is different than the status quo,
re-creating institutions for disabled people
from cognitive to learning to psychiatric to physical disabilities
to segregation without inclusion,
without The Americans with Disabilities Act and Universal Design
for everyone to live their life however they want to live,
a age of conversion therapies
to change everyone’s brains from the way an individual citizen thinks and feels
regardless how the person think and feel,
a age of creating clones of people,
a age of no creative thinking or inventive thought,
an age of being afraid to express ourselves the way we feel,
an age of black and white thinking and polarization.
we are about to enter an age of searching to create the perfect human being once again
who are white, anglo-saxon, heterosexual, non-disabled males,
where we are leaving behind an age where Susan B. Anthony, Martin Luther King Jr, Malcolm X, the Black Panthers, Ed Roberts,
and many other activists fought hard for women’s rights, the Civil Rights Acts of the 1960’s,
the Section 504 of Rehabilitation Act, where Free Appropriate Public Education Act for All was passed,
where the Individuals with Disabilities Education Act was passed, where De-Institutionalization began over 40 years ago,
where the Sexual and Gender revolutions happened, where the Early Intervention Laws of the 1980’s began,
where the independent living movement got started,
where The Americans with Disabilities Act was signed,
where the Autism CARES Act was signed and passed,
and now Trumponian Era will try to erase all that and the history behind it,
Instead we need to support getting the Disability Integration Act started,
we need to ensure everyone is respected
regardless of gender, sexuality, disability, race, and religion.
We need to ensure human rights for all,
and we need to do this before it is too late.
We need to remember eugenics did not work,
we need to remember the word ‘genetics’ is similar to ‘eu-gen-i-(ti)cs’,
we need to remember what science means to all of us,
We need to remember to be open to everyone,
away from another age of binary thought,
away from a President-Elect who is too ignorant and too emotional
to think everything through as our soon to be President.
We need to pop the bubble Trumponian Era is trying to create,
we need to cure ourselves from the institution of Trump
who does not want to support disability and difference,
we cannot build walls around anyone,
we need to build bridges around the world,
to ensure we create the justice everyone always wanted,
to ensure everyone can live together,
to ensure everyone is included,
to ensure public education is free and appropriate for every child,
to keep the Affordable Care Act Obama signed,
to build supported decision-making for everyone,
to secure our minds to think the way we feel about inclusion,
to feel about whoever we love in this world,
to communicate our thoughts however we express ourselves
through our physical voice or through sign language or through assistative technology.
To ensure that human rights means disability is respected part of the human experience
because disability is a part of the human experience.
We need to secure self-determination and the choices everyone gets to make every day.
Everyone deserves the right to follow their hearts and follow whatever dreams they have,
because in the end,
we need to all march this week.
We need to march for our revolution,
we need to march for our freedoms that many past civil rights leaders and our founders created
with many of the current civil rights leaders in all of us,
and we need to march for justice!
That is all from a activist fighting with everyone!

A Poem Called “Letting Go”

Letting go,

by theamazinJ

Healing myself,
putting the past behind me,
helping myself,
no longer hurting,
not fearing the future,
allowing myself to love,
holding myself to feel my growth,
no longer arguing,
no longer disputing,
just moving forward
just letting go of the past
helping myself to be who I am
without yelling,
without raising my voice,
and just speaking in peace
speaking with justice,
contributing with my hands
figuring things out
how to work with others,
how to build bridges in the community
how to build cultures together
and how we can communicate.

Sometimes it raises questions
of concern,
Sometimes it raises disputes
from the past,
then it allows me to let go
and feel myself fly,
but, it allows me to draw
it allows me to write
it allows me to communicate
one and for one and one for all,
things happen,
and it does not matter what happened,
as long as we continue to move forward,
as long as we grow forward,
as long as we continue to learn,
and most importantly,
as long as we live.

It takes time,
to let go,
It takes time
to see the unknown
and not be afraid,
it takes time,
to work hard on
what we need to do
in order to be positive
working hard on creating change
as an activist,
as I build bridges,
and as I do not limit myself
to speaking with only a certain group,
a certain people,
and focusing on teaching,
and focusing on my culture
and building inclusive community
with cross cultures
including disability
while breaking stereotypes
from the inside, out,
it takes time,
it takes precious time,
but we need to try,
we need to work it out,
and we need to find hope,
and strength,
and work it all out in the end,
because in the end,
it is all up to us,
it is all up to
what we want to accomplish,
being positive or
being negative,
in order to deconstruct the world
from something negative,
we need to construct something bigger,
something newer and great,
and something we can all benefit from
to work to build
inclusive community
with universal design.
So, let’s all let go,
and help contribute
constructing
a universally designed
inclusive community.

Supporting the Decisions Everyone Makes No Matter What Varying Impairments Anyone May Have including Autistic people

Supporting the Decisions for Everyone No Matter What Varying Impairments Anyone May Have Including Autistic People

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 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.

Despite all of the misunderstandings and misguided ideas from years of a perception that someone with cognitive impairments is not capable, some in society are finally learning today what person centered really means. Yet, many do not presume competence. The tragedy of the thinking that Autistic people don’t have a mind capable like others has created in the past, a blood boiling battle scene between Autistic people and many others who striving for a way of conformity. Lately, the people who get the most credit for starting this battle scene is the organization, Autism Speaks. However, they are not the only ones who need to take responsibility for this battle scene between Autistic and non-autistic.

Many people before Autism Speaks have contributed to this blood boiling war between Autistic people and others who strive for perfection. Unfortunately, the mainstream media has contributed to this as well by mostly taking the sides of people who are against Autistic culture. This war against Autistic people is really a war against humanity and human nature, yet it should not have polarized thinking. 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.

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 12 years has been too hurtful to many who feel they want to embrace who they are regardless. This makes me feel that not just Autism Speaks, but everyone needs to re-think what we have done in the past that preyed on too many people and in some ways continue to do so.

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 because he thought society could do away without these differences.

I am sorry to say, but the world created the way Hitler eventually started the Holocaust when he thought about how to perfect the human genome, race, and religion and whether we like it or not. We create people like the way Hitler was in the world. 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 is vulnerable in society, but we need to use that in a different way then the way we have been being vulnerable in the past. Supporting decisions that individuals make in the world is figuring out what will affect both the individual and society in a positive way. It is not about conforming to others, it is about being a leader of your own life. We just need to be vulnerable in the way we affect others and ourselves in the decisions we make in our life.

Much of society has been vulnerable to perfect a human genome that is constantly mutating, constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We can possibly change that, but we cannot stop that. 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 society builds communities, 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 of what we want to influence since we all go through the same trials, tribulations, and rewards in life to form our identities and ideas.

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 make, while others we felt could not make decisions at all and could not think on their own. This is still is still happening today.

We need to give everyone the tools to decide and think about what they want in their life on their own even if it can be difficult with some individuals. 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 the support from people we feel can assist us especially those close to us in making the best decision for making our life a success. There is always someone we can speak to that can help weigh the pros and cons of a decision in our life. For those who have more severe impairments, we need to help them as well to make their own decisions that are right for them regarding what the individual wants.

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 the 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 especially those close to us.

Though, the way we think depends on our experiences. For example, if we spitefully act because we think we want to hurt someone emotionally or physically, we essentially hurt ourselves in the process. The golden rule still stands to do good to others always, however, sometimes what we think is doing good in our mind, may be hurting others without even thinking it through. This is definitely true when Galton created eugenics that eventually became the study of genetics that led to the thoughts many people have had since then that has hurt society.

Autism Speaks may not have been thinking through in the past how they are helping Autistic people in society may not be actually helping Autistics everywhere, but they hopefully are starting to learn. However, every non-profit organization has been thinking irrationally including the Autistic Self-Advocacy Network and many other Self-Advocacy organizations that also seem to not think about the way everyone feels. Yet, the self-advocacy and the Neurodiversity movements that were started by self-advocates helped (and continues to help) the parent movement begin to understand things every day.

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 own thoughts and experiences, that are different than others and ourselves.
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 individuals in society cannot live 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 accept and protect the boundaries we individually make ourselves to the way others set their boundaries too. 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.

Society can lead to too much frustration because of a social construction of conformity to make everyone the same, as followers. Some may be more frustrated with who they are than others because their experiences with how society treated them or certain 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 served.

Everyone has their own way of living. Everyone has 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 and not conforming. Conforming is living in a world that is universally designed to fit everyone even if society does not understand that type of conformity. 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? That is a good question because our society has always conformed to the idea that its citizens are too vulnerable and need to be corrected (or fixed) to fit in.

The world is a tough place to live in. Autistic people can be vulnerable, mostly, everyone is different to the person standing 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 and are susceptible to others in the way many think.

Human culture is defined; all of us think whoever is standing out in that moment yelling their voice the loudest and often ranting a lot, is the leader. This is not true, we are all leaders of our own life, and self-directing, as we all need to believe that we are happy with who we are and connecting with others. The vulnerability everyone has is just a strength we have that we need to show others that we need support. So, we all get to support the decisions we all make in the best possible life we all want, including Autistic people.

In order to think through how to create more positive experiences with others in 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 else 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 especially in our society, including Autistic and non-autistic alike.