Tag Archives: Disability Studies

A Poem Called “Nothing About Us”

Nothing About Us,

by theamazinJ

Everywhere we go,
everywhere we look,
We see destruction,
we see walls being built,
we see the development of institutions,
we see the lack of community building,
everywhere we go we see Donald Trump’s face
in place of the faces from the 1930’s,
where in 1927, Oliver Wendell Holmes
from the U.S. Supreme Court
finished what was started in America
where the dark history of America
helped stir the pot in Germany back then,
where even today
many people still keep in mind
what American History is really about,
keeping the rich richer,
and about building a fascist state of mind,
while The U.S. Supreme Court in 1927
from Buck Vs. Bell
secured a statement
that is still in everyone’s minds today
stirring the message over and over in their heads.
The message was clear, the message was disturbing,
and the message was concrete,
when Holmes said “Three Generations of Imbeciles were enough…”
It allowed the preconceived notion
that the medical model of disability will dominate,
it also allowed Americans
to build a war against each others
against society
and against disability
while at the same time
trying to prevent disability
and not only that,
but eventually labeling
everyone ‘high’ functioning or ‘low’ functioning,
and even establishing medical charity organizations
to this day
to use this rhetoric from Buck vs. Bell
even more than they had done before
to establish a society of sameness,
a society of perfect bodies,
a society where there would be lethal forced euthanasia,
a society where there would be eradication of certain peoples,
and a society segregating people
by class, by gender, by race, by sexuality, by ability,
and by religion.
This is the society Donald Trump wants,
this is the society that Paul Ryan hopes for,
this the society Mitch McConnell strives for
and what Mike Pence asserts every day.
We need to stop this from happening,
we need to embrace every part of humanity
every day of our lives,
with supporting each other,
and encouraging everyone
while remembering
why we are here on this planet,
and how we can rely on each other everyday for support.
Society is interdependent,
we are not finches,
we cannot take Darwin literally when he said
it’s ‘Survival of the Fittest’,
because humanity is different,
humanity is supported,
we support one another,
we support other animals,
we support other kingdoms of taxonomy,
we support the climate of this great planet,
if someone is sought out to destroy this diversity
then we need to sought out justice to the people
wanting to harm and wanting to do this,
because we need to construct
a world of love for this planet
and everything and everybody that is on it,
no one can take that away
and no one can segregate or harm another,
in the end,
its our duty to take care of one another
regardless of who or what we are,
regardless of what kinds of supports
the person needs to achieve their own self-determination,
because we cannot be influenced by
Donald Trump’s establishment or Paul Ryan’s anger or Mitch McConnell’s fury,
or even Mike Pence’s ignorance,
To be truly United,
we need to include everyone,
we need to build community,
because disability is part of the human experience,
but is also part of living organisms,
and we need to remember,
Nothing about us, without us
is Nothing about US.
Everyone supporting one another, is not controlling anyone regardless,
that’s what democracy is really about.

A Poem called “Anxiety is a Killer”

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Anxiety is a Killer,

by theamazinJ

Anxiety is a killer,
I cringe,
I fall into its trap,
I feel paralyzed,
I feel like I cannot do anything more,
I feel like I cannot interact,
I feel too sensitive from it,
I feel like everyone hates me from it,
I feel no one believes me,
I feel like everyone thinks I am lying,
I feel like I can’t breathe and have asthma,
I feel like it makes me feel like I am in a shell,
Anxiety is a killer
both internally and with the community,
Anxiety is a killer
it can hurt me deeply
with all my relationships,
Anxiety is a killer,
it can make me feel all alone,
Anxiety is a killer,
it can easily isolate and frustrate me,
Anxiety is a killer,
and lead many to think I am crazy or psychotic or a worrier,
Anxiety is a killer,
because some assume to not presume competence in me,
Anxiety is a killer,
it can make everyone think I am not good enough for the world,
Anxiety is a killer,
it can lead too many people to think they need to baby me
or coddle me or stroke my ego or think that I can’t run my life,
even though I am very capable of running my own life,
Anxiety is a killer,
it ruins lives and tries very hard to do that,
Anxiety is a killer,
and I just need support to tell me:
I am not a liar,
I am not psychotic,
I am not crazy,
I can breathe easily,
I am not frustrated,
I am not going to isolate myself,
I am not angry,
I am not going to let it control me,
I am competent and very intelligent,
I am very happy and proud of myself,
I am well liked and loved by everyone,
I am able to run my own life and self-direct what I can do,
because of what I am doing right now and also telling anxiety to “Shut UP”.
Anxiety is a killer, but with medication and coping mechanisms,
I can tell it to “Shut Up” anytime and it listens,
without all of that,
I do feel overpowered,
without all that,
I do feel disempowered,
without all that,
I do feel unloved and not well liked
because the way anxiety makes me feel,
I have ruined relationships or ended it myself,
sometimes some relationships were worth ending,
Anxiety is a killer, but it does not have to be,
It can end a different way,
It does not have to be a self-fulfilling prophecy,
It does not have to be lying to me,
It does not have to be making me feel isolated,
It does not have to be leading everyone to stroke my ego
or have others try to run my life,
I am capable,
I am very competent to running my own life,
I am studying to better advocate
and change perceptions of the way the media
and the public think of disability
so that one day
everyone will know
and everyone will expect
disability to be accepted as a minority group
that is so large and vast
that it can affect everyone at some point
and, is part of humanity,
disability not only affects Autistics,
it can affect everyone and certainly does,
disability is wide and vast,
anxiety is one of the many,
but can be a killer,
it is just that anxiety needs to be controlled,
even though it is always there,
it is always a struggle to shut it down,
though anxiety is a killer
and, it is a part of life
to many varying degrees,
just when anxiety becomes a killer
is when it is in its most severe degree,
we just need support in guiding
our life to tell it once and for all
to “Shut Up”.
Anxiety is a killer,
and even now,
it is still a struggle
to stop it from saying shit every hour
that we all live.
So, no one can say anxiety is an excuse,
no one can say it is easy,
no one can say to ‘just relax’,
and, no one can say just be positive,
anxiety is a killer that
can be stopped
if people just listen,
and support the ones affected
to tell it to “Shut UP” all together
so that it will affect us lesser,
whenever anxiety stops someone in it’s tracks,
yet, anxiety is always there even in it’s smallest degree,
we just have to control it even
for many with lesser degrees of it,
it’s just always there no matter what,
and that’s that.

A Reflection I wrote in the Fall on ‘The Importance of Inclusive Education’ and a few other things about Autism Acceptance

The article, “Islands of Loneliness:,” by Theoharis, et. al, the authors write about the importance of inclusive education for Autistic people like myself. I reflect how I agree with the authors. They interview several Self-Advocates on the autistic spectrum including Temple, Tito, Daniel Tammet, and others (there is also Carly Fleischmann as well). These people have different stories about what drives them for social interaction because if you met one Autistic person you’ve only met one Autistic person. Every one on the autistic spectrum is different. And as in beginning of the song by Freddie Jackson called “You are my Lady,” he sings “There’s something that I want to say, but words sometimes get in the way…” This song makes me think of how it is hard for Autistics many times to communicate the way so called ‘normal’ people speak.

Instead of reiterating what my Autistic peers have told you in this article which are valid too, I prefer to reflect on my own needs and wants for social interaction. As I discussed in my reflection on Mark Haddon’s book, I went to Autreat 2 years in a row. I am hoping to make it to another Autistic run event again futures to come. Although it is not called Autreat anymore and Jim Sinclair does not run the week long event anymore. One of the many retreats over the summer was created after Jim disbanded Autreat, called Association for Autistic Community conference or what some people call Autistic Con or as some friends will still try to call ‘Autreat’.

I say being Autistic is culture because there are many things that make up who we are. For example, stimming like flapping when we are happy, angry, sad, applauding, etc to express ourselves. Another part of Autistic culture is echolalia which means a person like myself repeats words or phrases without realizing it. It is very hard to be around Non-Autistic people especially those people without disabilities because they typically do not understand us. Sometimes I don’t get enough energy (or in Autistic culture we call enough spoons) to explain to Non-Autistic people what we are and how we like to interact. Though many people find because I have practiced passing as normal so many times, that there are Non-Disabled people who don’t really think of me being Autistic. However, I am and always will be!

Autistic people do socialize when we want to, we just need to be comfortable with the person we are about to socialize with. If someone is going to want to interact with us, then we need them to understand our own space so no one crosses into our boundaries either verbally or nonverbally. Everyone always talks about how Autistic people lack social skills, but there are many Non-Autistic people who lack social skills too. Social skills and boundaries should be taught in schools with everyone. The article talks about the importance of inclusive education among every student even those who are on the autistic spectrum and I truly believe that inclusive education helps. However, it’s not perfect since inclusive education needs to still ensure every one in the classroom including teachers respect one another.

I wanted to make sure I was mainstreamed by the time I reached Junior High School. Although since the education system wasn’t exactly accepting back when I was in secondary school, I was bullied not only by students, but by some teachers too. Society decided to create segregative schools and settings for Autistic people since we were different. They felt and still feel by segregating many of us, and teaching us to conform, we would learn to adapt to the current system. We were considered burdens to the current school system and to society, so they place many of my Autistic peers in segregative Residential school centers throughout the world today (like the Judge Rotenberg Center). This is not inclusive and does not provide us with the self-determined social interaction that many other Human cultures are given in school.

Educating people does not even mean placing students in private charter schools either where the students go home after a single school day. The current public primary and secondary school systems need to acknowledge the many ways a person interacts and communicates and learns with the world. Not being able to speak does not mean we don’t want interaction or communication, it just means we may use different ways to communicate our thoughts to others. For example, Henry Frost fought to be included in the public school system as a Non-verbal Autistic youth!

Loneliness is a problem in this world that society created, but we can solve it by understanding each other more. By understanding each other, we can read the many hundreds of blogs written by my Autistic peers telling our stories as more blogs are created too. The article stresses how many people on the autistic spectrum write about their autobiographical stories for others to read. Well, everyone needs to read them all whether published in books or personal blogs, and read each account as a way of understanding the differences so that society can understand and accept. Listen, read, learn, and understand Autistics who have their own way of just being and interacting.

______________________________________________________________________

Additions after the reflection I wrote:

There are many Autistic people who are Non-Verbal. It can be hard for parents of Autistic children to know that not every child is going to be the same wanting and reaching for the same goals as what many parents want for their children. Many parents want their children especially those who are Autistic, to think like the status quo and make a lot of money, and I understand why. Not everyone can be a CEO, a Director, a social butterfly, or even a Celebrity, and parents need to understand this. It’s okay for any one to be their own unique success story. Many parents of Autistic children want their children to be success stories not needing any support. Support is a necessary part of being Human because everyone needs some kind of connection all throughout their lives to feel a part of someone else. That’s why we have our families, so people can be supported. Independence is important, but everyone needs to remember the importance of Interdependence in humanity.

Please Read Lydia Brown’s “Privilege and the Myth of Independence” on her blog, Autistic Hoya!

Please also read Alyssa’s post on “Ableism is to Blame”

Please also read Kassiane’s post here ‘On Role Models’ from her blog from 2012.

There is also another retreat called Ocate Cliffs as well, run by Star Ford who runs Divergent Labs!

Here is a video I like to show people about what not to say to Autistic people.

Here is a video by Drew Morton Goldsmith a Non-verbal Autistic person who talks about the importance of Autistic Rights!

and, here is a video series called Ask an Autistic, Amythyst has a series of videos on ‘Ask an Autistic’ who vlogs different topics each week on her You Tube account, she also has a blog which she states on the videos. This is the first episode:

Any one who wants to see Citizen Autistic on Hulu can see it tomorrow and talk about it on a Twitter feed on Monday!

There is so many things every one needs to learn about that people generally don’t know or think about when people think about autism in general.

Causton-Theoharis, J., Ashby, C., & Cosier, M. (2009). Islands of loneliness: Exploring social interaction through the autobiographies of individuals with autism. Journal Information, 47(2).

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Have a great week!!

OUT, J

My Reflection from class in the Fall on ‘The Curious Incident of the Dog in the Nighttime’ by Mark Haddon

SPOILER alert: For anyone who has not read this book yet!

In Mark Haddon’s book “The Curious Incident of the Dog in the Night-time,” it made me think of the visual thinking I have. The character in the book, Christopher, has much anxiety, panic attacks, sensory issues, and visualizing his plans to be able to function in a society which does not accommodate Autistic people like him that much. It showed how very intelligent, but concrete Christopher was too, even with math and science. It was pretty accurate portrayal of what goes on in my mind with a few differences.

I find that there were similar traits to how I feel in society. The similar traits between Christopher and myself are that we try to adapt to a society with many multi-sensory experiences in the world. For example, when Christopher was traveling to London to be reunited with his mother, he was trying to compensate by trying many different relaxation techniques. One of which was counting to 50 breaths so he could stay calm. He also was vocalizing a lot on the subways in London which I do a lot when I am on the subways in New York City. Some people actually are staring at me, but then I turn to say hello to not be known as a freak to them.

Christopher was very compassionate for animals and much feeling for the dog that his father killed which is why his father bought him a dog at the end of the story. Although his parents split up, his parents had their own way of living with their Autistic son, Christopher. In order for both of his parents to accept him for he is, the mother split a part from his father by finding another man which eventually she broke up with. The father hid letters the mother sent grieving for Christopher’s forgiveness in the way she used to treat him. When Christopher lived with his father solely, the father didn’t embrace and accept his son for he is, and always tried to construct his son to pass as normal as much as possible. His father eventually celebrated him too.

It was only until after Christopher found out his father killed the dog, Wellington, and Christopher sought out to find his mother, that both parents accepted their son. Acceptance is a process and everyone has the chance to work out their issues with themselves to celebrate who they are and other people. When a child has a disability like autism, many parents don’t want to accept their child is Autistic, instead find a way to ‘fix’ them or make them ‘pass’, and not honoring the person their child is. Many parents look to organizations like Autism Speaks and Autism Science Foundation to fix their child to be like everyone else in order to ‘normalize’ their child. But, what is normal, anyway?

All throughout my childhood, I was always Autistic, but was never diagnosed until I was an adult. I was always very anxious to be around society, I didn’t like people touching me in a certain way, and still don’t. I also had many other sensory issues like not wanting to be around abrupt noises and I do stim either with my hands or my whole body.

Autistic people need routines, a sense of knowing what is going to happen, and repetitive thinking in our way of doing things. Sometimes being Autistic can be frustratingly stressful causing a panic attack when we are not knowing what to expect from a new situation or person. New situations and people can be anxiety provoking for Autistic people like Christopher or myself. However, autism is a developmental delay which means we can learn to be comfortable with things in time at different times of our life. It is what makes an Autistic person a human being too.

When I meet other Autistic people I feel happier than when meeting a person who is not Autistic because I am able to communicate in the language of autism with anyone on the spectrum. I believe Christopher from Haddon’s book would feel the same way. It does not mean I don’t like meeting Non-Autistic people too, but there is a different feeling when meeting other Autistic people. Everyone has their unique properties of being Human, but most importantly everyone has people they are most comfortable with.

When I attended Autreat the last 2 years that Jim Sinclair ran it, I really loved being able to Flapplaud with our hands instead of clapping. The first year I attended Autreat, I loved being able to use interaction badges to know when we wanted to communicate with each other. I also enjoyed working with the Autistic children at Autreat in 2013 where I ran the children’s program there because my friend who ran it became ill during Autreat.

Autistic people need to have the community we live in, to adapt to our needs and wants too. Police officers and other authority figures are becoming increasingly aware of what it’s like for an Autistic person in the community. For each culture in Humanity, we learn different things from different people. It does not matter what culture we belong in, whether it’s Autistic culture or Deaf Culture or any other culture in Humanity, we need to find a way to communicate and accept each other.

Haddon, M. (2007). The Curious Incident of the Dog in the Night-time. National Geographic Books.