My opening remarks for the 2015 Day of Mourning Vigil in New City, NY

(The vigil will be held today at 3 pm at Rockland County Courthouse lawn, the link for the vigil facebook page is New City Vigil!!

2015 vigils flyer v2

This day is important to me as an Autistic and Disabled person. I have so many emotions from why I believe in this day of mourning vigil for my many peers in the disability community. I have a strong supportive network I built up my whole life between the family I was born into (though sometimes it seems they may not understand my own being Autistic or Disabled, but do love them), my friends I have made all throughout the years, some of you are here today, some of you or most of you are not.

My fight in me to advocate and change the world through my activism has been very slow, too slow at times, because there is a lot of work to be done to get the world to understand humanity, care for one another, and to relate to each other. I know I am not a perfect person, in fact, I am far from perfect, I have made many mistakes in my life due to the anxieties I felt through the years. It has made me learn what is more constructible to do and what I can do to make things better.

I am 35 years old now. So, I will probably continue to make mistakes, but hopefully not as impacting as I have done in the past which made me feel regret and despair for doing it. As we move forward in our lives, we need to remember those people in the disability community where their lives were not very supported, not very happy, and were often killed by the very same people who should have been supporting them all along, parents and caregivers.

Looking at my life, I am lucky that whatever I put into all my relationships, I put my all into them because I care so deeply. This has been a mistake sometimes because not everyone thinks like the way I think. I have been hurt in the past by people I put my all into that really either didn’t care about me or didn’t even want to connect to me at all.

I have been through a lot in my life dealing with this issue I have. Not being able to know that not everyone is going to want to feel what I feel and not everyone will care, and not everyone is supportive, can be frustrating to a person like myself.

As an Autistic person, I feel that it’s so important to know and find the people who will listen are from the supportive network I have now. I created this supportive network for myself from those who want to be in it and dismiss those who don’t want to be in it. I have known as well that whatever I put into the world, comes right back at me, that’s the way karma works. If I continue to bring good into the world, the world will be good to me. There are many people I met in the past whose karma gave me something negative. It’s time to give karma back in a good way to the supportive network I have built all along.

The people I have in my life who care a good deal have given me so much good for me. Everyone in my support network gives me good in a different way individually. I need to continue to forget about people I have in my life who gave me bad and made me feel bad.

Back in 2008, I was sitting in Starbucks in Grand Central when I came into contact with a woman of many bags and a heavy (mostly artistic) trench coat. She was sitting down next to the electrical outlet so I can charge my phone at that moment. My phone was about to run out of battery. She said I can use the outlet and leave my phone on the table. We began talking a lot. She seemed very nice. She started at some point mentioning the feelings she began to have as she was regaining her strength as a psychic.

This woman told me how I am, and began telling me things about me, that I didn’t even tell her about previously. The psychic at Grand Central, even knew that I have been struggling to find myself and my voice. She said that the career I was doing was nto quite exactly what I was intended, and that she felt I will be finding it soon, but not knowing when. She also told me how much of a an Artist I am, but have been denying this for much of my life. She told me how I do write, but art is my main talent.

She felt the career I chose at that moment (Ultrasound) was not really exactly for me. She felt I can do a lot more. Just before I hopped on the train to tarrytown, she ran over to me to say one last thing to me, She told me how I going to have a small, but minor surgery that year. By the end of the year, I did have surgery to remove a small cancerous tumor on my tail of my pancreas which also led me to have my spleen completely removed. I am left spleenless to this day.

Two years later, I had open heart surgery for an aneurysm and aortic valve repair too. This psychic even said to me that that was an arranged meeting with no payment. Ever since then, I started to wonder when I will see her again. She said that the next one will be an arranged reading that is longer and different. I have been realizing my spirituality a lot since then. The out of body experiences I have gotten, and other spiritual things as well I experience, have drawn me closer to the missions I need to fulfill.

My life has been turning around for the past few years. I have been impressing my support network on this transformation I made for myself. My life has really been much more than I have ever done, but I still have a lot more things to do to finalize the transformation. I am officially at the CUNY School of Professional Studies now for Disability Studies in graduate school. I was finally able to start the program after getting in last June. I am even a Kennedy Fellow.

I am pursuing my dreams to what I need to do for myself now. It’s been tough for my family because I need to be supported financially by them still. I only work part time for now, but need to travel to queens for the job. As an Autistic person, this can be a challenge for me. However, the job in itself is rewarding for me. I am a Self-Advocacy Liaison. I think about this song as I listen from the movie Footloose entitled Almost Paradise, by Mike Reno and Ann Wilson. This song really touches my heart and soul so much especially hearing these words:

“I feared my heart would beat in secrecy, I faced the nights alone, on, how I would have known, that’s all my life only I needed you.”

(as I think of these words from the song, I think about the need of how I want to be an ‘angel’ like how the psychic in 2008 said I would become to achieve my missions. She said something scary to me though, how I am going to live a long life into my 90’s. It was scary because at that moment I was in my late 20’s. I was scared because I knew I had a lot more to do, and back in 2008, I wasn’t even doing what I was supposed to be doing. I was though, doing things through volunteering and writing, but in the past, few years I began doing a lot more and continuing on this path working with my peers in the disability community to change the world.

It is why I started reaching out more to do these vigils for Disability rights organizations like the Autistic Self-Advocacy Network. Life can be tricky sometimes, it can be overwhelming, it can cause for anxiety, and it can be hurting. But, we need to know how to resolve the pain of the hurt, the overwhelming anxiety, and finding our moment of who we are to be happy. We are all good people, but we need to engage our dreams and reality to live and be who are no matter what. It’s something we all need to think about: what is normality? However, most importantly what is our own normal and allowing ourselves to be that normal.

Sometimes it can be anxiety ridden, when we don’t have our normal of what makes up a person a reality. It is why those who were supposed to be supporting them have killed many peers in the disability community. It is why we mourn even Garnett Spears who had this unfortunate thing happen to him by his own support, who his mother allegedly, who needed to support him. Life can be tricky as well when especially why many parent advocates who want their children to be whatever the parents want, is not making their children celebrate who they are. Many of you are probably thinking about this normal that Galton created years before with the Bell curve.

We need to remember normal is what people choose individually with what works for them. Otherwise the person may be influencing about what they think the other person needs to be. This is challenging for many to think about what is termed self-determination. By thinking about self-determination , the individual needs to decide for themselves what works best for them. If they choose medication, that becomes their choice, if they choose other ways instead that’s also their choice, and if they choose both methods, that is also the choice of any individual citizen of the world. Everyone chooses their own methods to maintain the normal way of being for them individually and we all learn what works best for us. This is self-determination to be able to get the individual to recognize the things that work for them. Medications are a personal choice, not a professionals or a parents choice to make.

Ed Roberts who is the father of the Disabiilty rights movement talked often in his speeches that led to the independent living movement. Wolfenberger often lectured about this too. It is why our society has begun to move in the right direction, although medicine has ben still influencing many parents and professionals to not enable individuals choices.

Parents and caregivers need to always remember to preserve love, understanding, and acceptance for everyone they are needing to take care of and love for life. Thank you and let’s remember these tragedies of the victims of these people with disabilities who were killed by parents and caregivers. Remember these word:

“Nothing about us, without us!!!!”

It will end with a poem I wrote:

Poem:

Love is Passion

I love, I care,
I urge you all
To do the same.
Give me a hug,
Give you a hug,
Give the people around you a hug,
But most importantly give yourself
A hug every day
Looking into the mirror to say to yourself:
“I love you! I will always love you and I will never stop loving you and will for the rest of my life”

Have been quite busy with Graduate school at CUNY School of Professional Studies for Disability studies!!

Sorry I haven’t posted in a while, but I will be posted soon the new BANNER for the Autistic Artistic Carnival 2015 on June 18 of this year for Drive Mom Crazy Blog’s 6th annual online event for Autistic Pride day!!!

OUT, J

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).

_________________________________

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.

Happy New Year 2015, A Wondrous, Amazing, Unknown, Winning Adventure in our Hands!

2014 was a continuation of transition with many different accomplishments I made. I started to finally begin becoming my own person whether anyone realizes it and accepts that or not…

A vision revealed before birth,
a triumph to work on,
a way of becoming,
you,
I,
myself,
34 years later,
I began to become,
to do,
to act,
and to be
my own person.
I may be strange to most,
I may be weird to a lot,
I may want things the majority
does not understand and
want at the moment,
However,
I am here to
change everything,
to bring justice to the world,
to make society understand,
to create a world
where everyone no matter who
or what
others will know what life is
and is supposed to be.
People may not understand,
people may think I’m crazy,
people may want me to shut up,
but I know what I am here for,
and I know what I need to do,
life will get easier
as long as the majority
understand the minority cultures
in the world which include
not only what you know already,
but disability cultures including
autistic culture too.
It’s 2015 now and
the time has come,
the time has approached us,
as we are almost in paradise,
or not even close.
We still have to remember
that we are here,
that we all matter,
and that being human means
to care,
to love,
to look at and be at a distance
where we see everything
about a person,
without being too close
without being too overprotective
and overbearing on others.
Many times the majority
only sees what they
want to see and
most of the time
see limited views
from being too close
to a person or place
or themselves.
That’s why people
need vision,
need sight,
need to listen,
need to speak every word
with passion.
Remember
each year we live,
we live it for a reason,
to reach our purpose,
to get closer to
finishing our mission,
to live is to die stronger,
happier, wiser, and
knowing we made the difference
we were meant to be doing.
Many times the majority
does not understand,
until it’s too late.
Listen,
breathe,
feel,
smell,
and reach out
to touch both
figuratively and
literally the many
awesome opportunities
the minority people
in the world,
have to build
a world the way it
ought to be,
the way it needs to be,
and the way others need
to see it.
We can learn from each other,
we can heal from each other,
we can love one another,
if only we respect
one another the
way we need to
everyday.
It’s a long journey ahead,
it’s an adventure
toward paradise in the distance.
Sometimes the people closest to us,
are really too close with little vision
of us.
Sometimes it takes a step back
to see, to hear, to feel,
to touch, and to reach,
so people can know
they have seen everything,
they have touched the spirits,
so they have felt the pains,
the joys, and the sadnesses.
so they know they have felt
society needing to change.
so they know to reach out
and give a hand no matter what.
the majority can be cruel,
but they do not have to be.
We are here to live
with convictions we have to
fulfill missions of hope,
of love, and of becoming
the person who will
eventually go back
and say “I’ve done it
and I have won, and I have
contributed to change a world
from the negativities the world
had to a more positive well being
of humanity.”
There will always be battles,
there will always be some kind of war,
but we need to remember why we
are here, and how to get back
to the finish line
in maze of gigantic proportions.
Sometimes we don’t start
the maze out right,
but sometimes we eventually
get on target zooming away
without looking back.
For every obstacle
we experience,
only makes our soul
better from when we started…

HAPPY NEW YEAR EVERYONE!!!! 2015 will be AWESOME if we all realize what we can do to make it AWESOME :)

OUT, J

FOCUS On The Present & How to Focus on Your Life

The 8 ways to Focus on the Present and How to Focus on your Life:::

1) How do you relate to people

2) How do you function in the world

3) How do you do your work

4) How do you interact and react to other people

5) Nothing about us, without us!!!

6) How I look physically

7) How Hygiene helps

8) How to focus on safety and security

These 8 practices are for everyone to remember and practice. Please always remind yourself of this and help others to know this too if they are struggling!

Find the connections you need to live your life the way YOU want to!!!

OUT, J