Some people are told they are overly sensitive. Some people tell other people they are not sensitive at all. Sensitivity is part of the human experience. Being sensitive is something we all go through whether we mask it or not. Sometimes being sensitive means feeling like something someone else says, or does in actions, is being overly critical of another person’s identity, actions, or things they like to do or say. However, being sensitive is just being human and we all need to acknowledge that. When we are faced with an action or comment from anyone else about who we are and what we are, we acknowledge it and move on.
“Society has a general tendency to repress the complex embodiment of difference” (Tobin Siebers page 100 Disabilty Theory book).
(Trigger Warning: This poem (as well as the compositions I have done in the past) are intentionally left with certain mistakes to show disability. Be mindful when reading this post and any other posts.)
From Being You to Being Me,
The struggle to find identity in the world is a battle
fighting cause we’re different or odd,
cause the status quo wants us
the way many want us to be,
the way many bully get bullied,
the way too many make assumptions and presumptions
from the way we look, the way we move, the way we communicate, and the way we express ourselves
with everyone around us.
Too many people don’t understand each other
causing the pain and insecurity too many people face every day
in the communities we have always known since growing up.
the pain hurts, the pain allows us to be afraid, and allows us to be angry,
The anger gets expressed in different ways
in different reactions to power and control,
some try to express their anger by building it up until there is an episode,
an episode of fight, an episode of flight no matter how they flee,
fleeing by doing something extreme in their own way
or by allowing the community to do something extreme to them,
in a destructive way either within themselves or expressing it openly,
by including others in that anger or by excluding.
the pain can hurt,
the pain can hurt really really badly,
trying to develop into the person we really want to be,
and ultimately can’t when too many people all our life
bully us in too many ways
so that they can tokenize us to the way they want us,
and the agenda everyone wants to bully for the control.
The control to tokenize, the power to euthanize
either literally or abstractly,
the power to re-create or re-structure a person
because no one likes and appreciates the person,
while the victim either survives the pain to form their identity
or becoming the token at the expense of their dominant oppressors
being seen as an inspiration by their oppressors
while being a martyr within.
The fight to be yourself is a battle of identity,
a battle within yourself and with the many people who didn’t understand,
the many people who either tried to re-create you as them
or the many people leaving you alone without someone to listen,
ultimately creating a battle within yourself,
either escaping from your life internally or fleeing from the outside environment externally,
everyone processes things differently, everyone forms their identities in their own way,
and everyone is vulnerable to the surrounding misunderstanding world around them
when we feel different,
sometimes we find a friend who understands and other times we don’t,
so we have to decide how we want to live our life.
We can be everything we are not or everything we are born with,
we can express the desires everyone thinks we are or we can be who we are.
we can listen to everyone and build walls around humanity,
or we can listen to our hearts building walls around our oppressors and build bridges with humanity.
The choice is ours.
We have our families.
We have our personhood battling to speak our mind in the surrounding society.
We create our own justice,
we create our own future,
we choose our destiny,
we can be lost wishing for a future,
we can become the oppressor we always hated,
we can become ourselves getting over our past getting over everyone,
giving ourselves the freedoms we deserve to be ourselves,
expressing the boundaries everyone can understand
so everyone respects each other with manners everyone deserves to receive,
looking toward the future,
being who we are allowing ourselves to express who we are,
not being too afraid of our differences,
realizing we all experience the same struggles
no matter what,
no one can convince anyone to escape their life,
no can influence anyone that family values don’t matter,
no one can tell a person their differences need to be changed,
no one can influence anyone to be someone they are not,
everyone just needs to presume everyone can find their own direction
with their own differences relieving themselves from the struggles
everyone faces daily,
to finally building themselves in society
from being you to being the person they are,
escaping the many people who told them,
and allowing themselves to express their own identity in the end.
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)
People live stronger and healthier when living with self-determination. Self-determination is moving toward independence with the support network we all need. However, many people who don’t have a strong support network need to find the inner strength to do it on their own finding people who can help them. No one needs to feel like any person with ableist attitudes will teach them that they are incapable, incompetent, and feel unwanted. Every one is capable, competent, and wanted with a mission to achieve anything they want in their life. Whether you already have a strong support network or you are trying to build one for yourself, it’s important to know that everyone in society is interdependent.
One way of gaining this support network and building your life is through self-directed services from your state developmental disability office. A lot of times self-directed services from each state’s developmental disabilities department helps create situations for people needing a way to live on their own, but with support. This program needs to be encouraged more so people with a developmental disability including those individuals graduating from high school or have been an adult struggling for a long time to receive these services themselves. It helps because as people reach adulthood, everyone lives in the community interdependently, experiencing responsibilities and respect from everyone around them.
The world needs to change by accepting disabilities in life because it’s all a part of humanity! So, when is the countries that are not accepting disability going to take the lead the United States is trying to do right now? I do know there are many Americans that are not accepting disability too. However, many Americans are leading in the fight for disability rights trying to create an inclusive community for Autistics and other Disabled folks.
Individuals in society achieve successes each day as an interdependent person no matter if you have a disability or not. So, why do many people still treat Disabled people either with an invisible disability and/or a visible disability like we are third world citizens who don’t belong with the rest of the community? Many people in the Disability and Mental Health communities live in institutions segregated away from their families and segregated away from the rest of the community without the respect from others. Many people outside of the Disability community throughout the world need to understand disability is a part of the human experience and does not need to be hidden. It’s important to improve the lives of every person in society and give support to the people who need it so no one is left in an institution for the rest of their lives. The most important aspect of our life is to create a situation where each community in society supports the individuals who are in that community.
Additionally, the Center for Disease Control (CDC) in the United States just reported yesterday that 1:68 people are Autistic in the United States. The media reported this as if Autism is a disease, however only 1 in out of every 68 people are being represented as Autistic. This is getting better, but we need more Autistic voices to represent themselves as Autistic. There is still too many people who hide Autistic people from society. Instead people need to allow Autistics to seek their own identity as Autistic, not being afraid of themselves especially the part that is autistic. Being Autistic is just as important as any other part of a person’s identity. Once we accept this as an identity, we will see the numbers increase more. Everyone in the community is here to help everyone around them. That’s a part of humanity, that’s a part of love for others, and that’s a part of the structure of the Human race. Humanity is a spectrum!! Everyone needs to accept and understand people without fearing the unknown races, religions, and cultures in their society. Thus, fear leads to much hatred, so why fear when you can love.
It’s time to give responsibility, respect, and immediate action to the Disability community young and old to be able to do things on their own by exploring their identity and working out their life with the support network when they need it to fulfill their life. This is important because it gives any person a chance to describe an identity that fits them. It’s essential for any one to have their own way of defining themselves. It also helps with fulfilling a person’s own mission to make a difference. We can all learn from each other by living in the community. There are many ways we can be supportive without doing and speaking for others, by giving choices to everyone.
Remember: Nothing about us, without us!
From The Grateful Dead’s “Uncle John’s Band”:
Well the first days are the hardest days, don’t you worry any more,
‘Cause when life looks like Easy Street, there is danger at your door.
Think this through with me, let me know your mind,
Wo, oh, what I want to know, is are you kind?
Be kind and respect everyone the way they want to be identified as. No one can be disrespected and hurt a long the way. Every one has their chance to live and be a part of the community at large ðŸ™‚
As Autism Acceptance Month approaches next Tuesday, Let’s build a strong United Community in the World!
Being in this world, we gain, we lose, we hurt, we pain, we forgive, we heal, we remember, we move forward!
Life is big! Life is a very grand, fearless adventure filled with much fear, anxiety, stress, and emotions keeping all of us feeling for situations, people around us, and others in our environment.
Having Awareness of who you are and the people around you is so important without having self-blame, pity, and not liking who we are.
Take a look at what I created here as the different things which identify all of us:
Now take a look at this sign I created which shows how we ALL can succeed in this world:
Being who we are is what gives us the experience of a lifetime to live our life filled with the emotions necessary to feel for everyone in this world in the way, we only know how to do it. Every one is different, but we all experience the same emotions. However, we all also want similar things in life too, one of those things is success. Being successful is different for everyone. Every person needs and wants different things. The most important thing we all want to feel is appreciation, respect, supportive network, independence, comfort from everyone around us, ultimately reaching for a goal to live in our special way finally being rewarded with material money to spend. (Thus, we live, from a post I wrote in 2011,Â Â Interdependently!)
Nothing is impossible for something you want to do to make a difference, we just have to spend our time being are own individuals with our individuality remembering every one matters and everybody is possible!!
Remember what eugenics stands for and why it continuously hurts so many people, still, these days! Here is a good video to watch about that, Grading People!