Tag Archives: interdependence

My “Dream that Turned Into Reality”

The History toward achieving my self-determination

(IRI) Independence Residence, Inc. (the IRI facebook page is here and twitter is here too : IRI and their youtube page is here: IRI) is a non-profit agency that works to help establish connections and better relationships for people with developmental disabilities and other disabilities to be self-actualized, committed to fulfilling independence, guiding the people they serve, and creating connections to last for a lifetime. This is what IRI does because they really care and are simply the best agency in the New York City region.

I started at IRI back in 2013 as a mentor/self-advocacy liaison as I continuously work to strive to positively impact the individuals that are served by the agency. Before I started at IRI, I always knew what I wanted to do, but was afraid to go about it. IRI gave me this opportunity as a gift that has allowed me to embark on my journey toward not only self-discovery, but a journey at helping others in the disability community find themselves and their voice.

Self-Advocacy is an important factor that helps people know who they are by identifying the way any one feels comfortable, learning to speak up, knowing their civil rights, learning what taking responsibilities means in their daily lives, helping our friends speak up when they are worn out or overloaded, and incorporating every aspect of their life by giving to the world the gift of self-actualization.

My work at IRI started out in this way especially when I started working with about 6 to 7 of their self-advocacy groups late in 2013 to teach self-advocacy, self-determination, and living an independent life. I have done so much for them so far including creating presentations, creating my self-advocacy board game, using my muppet “Max” (non-binary gender, multi-sensory, Autistic, 85 years old, Max is non-binary gender in appreciation of those friends who really are non-binary gender) from December 2010 when I bought them at Columbus Circle. I continuously build connections with not only all the individuals who are my peers, but with the staff who I can say are my peers too in the broader community.

I have earned their respect. I have helped in so many ways including the way they thought about re-writing a vision, mission, and values statements for their organization. I brought them to the next level of being able to guide the individuals they serve toward the person’s with disabilities self-determination.

Now I have self-direction services in which they were part of the help toward me achieving this for myself as I help their individuals. Although, my self-direction services is through Westchester Institute of Human Development, ARC of Rockland, and my 13 people and growing of my circle of support I create for myself.

What is self-determination?

Well, self-determination means something different for everyone. That’s the beauty of self-determination is that it is a definition that changes for each person’s own individuality. Some people need a balance of the medical model and social model while others need solely the social model of disability. Social model of disability is obviously the not so stigmatizing model. The social model is good for everyone to understand that they have a choice of whatever is good for them. This is what is called ‘person centered’ approach.

Social Model vs. Medical model

The medical model is not and never is ‘person centered’ because it states that the person is the problem and needs to be fixed or eradicated from society. It also is stigmatizing in many other ways by saying that the person is not human and a burden unless they conform or fix their ways to be like the mainstream ‘status quo’ of the society the individual belongs to.

Conforming can be in the way people move, make eye contact, quiet hands, or even speak with the same language as the masses do. The ‘status quo’ is not necessarily bad, it just means that everyone is standardizing the approach to communication, language, movement, hearing, sight, touch, and expressing oneself in the world. This is why the social model of disability is better!

Is this right or wrong? Well, it depends on what an individual wants from their life. Some people are fascinated with the status quo. But, what does the status quo even mean? What does it mean to be mainstream?

Communication is Key!

Some people or most people in society, expect immediate responses to their communication in an impromptu response through speaking through the mouth. However, any one who speaks too deviant from however the status quo mainstream people speak, is often shunned, ostracized, silenced, placed in institutions, and/or written off as not even human due to being seen as bad people by much of society. This is the reason why mainstream society and the majority individual non-disabled citizens of the world strive for perfection with their black and white thinking of what they deem the ‘perfect’ human being. This is not right, not fair, and does not allow diversity to thrive in the world.

Everyone is different and societies in this world need to remember diversity matters rather than pretending it does. Differences is what makes us human no matter who we are and what we do to achieve our successes in the world. If you meet one human being, you’ve only met one human being.

Appreciating and grateful for my connections I make and my family

IRI, CUNY SPS, JCC in Manhattan, ASAN, my connections I made from CAFETY, SANYS, the many peers I have met through the years especially since 2013, and of course my wonderful loving family have all helped and continuously help me in so many ways.

I have created an amazing network of people I can say I know and cherish every moment of my life as an amazing creative story that I make for myself. If it wasn’t for these people I have in my life, I would not been given a chance to embark on my own self-determination. Not only that I am now able to build my goal of finally becoming the person I always wanted to be. Ultimately, finding my voice and self even though it’s hard when being influenced by so many people I talk with in my interactions in the community. And, these people help find and give me my voice!

Detaching from other people’s conclusions to finding my Authentic Self

It’s difficult to detach from other people’s conclusions when I have thousands of people’s conclusions in my mind that confuses me. I am learning to detach each and every conclusion to formulate my own personal conclusions without forgetting any of these people either (meditation is the perfect grounding point for me). Everyone’s story and conclusions is important and unique to them. Though, my voice and authentic self is what counts to what I want for myself and what is good for me, nothing more. That is my self-determination!


“Turning Dreams Into Reality”

Happy Autism Acceptance Month that begins in 24 hours as April begins. Thank you for everything from everyone who helps me especially my family! It is my life now and what I want to do finally and guess what, I have not only my family supporting me, but so many others as well.

Emotions roll over us all the time, but it’s just a matter of staying a positive force in the world to become the wonderful person that we are with the spirit that lies within us…

Love is wonderful thing!

Now, listen to this song: (Almost Paradise by Mike Reno)

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.

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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

9/11/II Tribute

 

9/11/II poem by Jason Ross

Sometimes our hearts fall in to what
we may call a trap,
We hit rockbottom
and the days seem longer.
Something spills inside of us
to reveal the uttermost tears
filling our eyes to the outside world.
Our blood is spilt, ready to pour out
in to the liberating field of our
body. We cry as we see the outside
world changing, we walk down our streets
knowing we feel too sad.
Our lives are cautious from this day forward,
our minds are wandering in to a new
dimension. We see what happened
on that day of 9/11/01 as we notice
the changes taking place.
10 years later, we can still
remember, remembering the
life we lived back then,
and planes soaring in to the sky
through buildings and forests.
Today on this day of remembrance,
we concur that our faith still exists,
our lives have come together,
and we bonded with the rest of society.
It doesn’t matter what kind of person
we are, it really does not matter,
all that matters is how united
we become. By the end of each day
especially on 9-11, 10 years after,
no matter what happens,
whoever the person is,
wherever the person lives,
and whatever the person does,
we become united.
The union becomes difficult to
keep up with these days at times,
but no matter what our union
should give us or take from us,
we should feel feelings of joy
comfort, and love. Sometimes our
lives feel threatened,
sometimes the fear becomes stronger,
and sometimes the fear just inhibits
us from doing anything.
The more our society comes together,
the stronger we become against that fear,
that loneliness, and we feel the solitude
to live our lives independently away
from our fear, but still connect.
Sometimes we may feel trapped, sometimes
we may feel hurt, and sometimes we may
feel like crying to the beat of our own drummer.
Most importantly, we consider 9/11 a day
to forget about our problems, just be,
and love every part of nature and people.

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I sense the difficulties every one has these days with keeping and/or maintaining a job, realizing this difficulty we have grown far a part from each other. Society gives us something good in our lives and we need to appreciate the gifts in life we receive. Sometimes in life we just need to love more than we ever have. I’ll remember you, will you remember me? Remember 9/11 brings us closer and more united. That is a saying we need to hear when a person moves on from us. Always remember that as you move forward in your life. We need to always look to the future and look back only for just a glimpse since we are always watched by those who have crossed over until it is time to meet them once again. Listen up, we need to live together because we are all connected finding our way to be united. Life is a journey and no body can do it without any support, but we are still independent. Independence does not mean no support at all because we are interdependent. Interdependence means we need to have the support to walk by ourselves, eventually doing it on our own. In the end, we cross over to the other side feeling achievement for what we did.  We care too much about those people who died in our past, but life is a sky full of lighters (angels) who guide us through our life. We need to come together united always and give anyone support forgetting what we represent. Live your life, live it well, and never let any one out of your sight who could potentially help you in situations where you need help. Its our only chance, our 1 chance to change, and always be united.

Thank you for reading this post and I hope you remember what your life can do to help another. Life is too precious and too short to think about yourself.

posting more soon,

OUT, J