I shift myself up,
I shift myself closer,
I send my love,
I heal the generations,
I move a lot,
and most importantly,
I follow my dream,
I am a Disabled activist,
I am Autistic,
I am Neurodivergent,
I am big,
I am small,
I am grounded,
I am alive,
I am part of life,
but mostly I am gone as
I am generations a part,
but now I win.
I made mistakes in the past
when doing things that
didn’t suit me,
but now I am me,
I am doing what is me,
and what I want
to help the world,
to help change the perceptions
about autism and disability
from the stigmatizing
and organizations like Autism Speaks,
but most importantly
to keep things positive
I would like to wish
you all a very
HAPPY AUTISTIC PRIDE DAY 2015!!!
I would like to thank Landon Bryce at thAutcast, Kelly Green, Artists and Autism Facebook page, and Leah Kelly at 30 Days of Autism Blog, and the Autistic Self-Advocacy Network, but most importantly Aspies For Freedom who started this day years before in the early 2000’s!
1) When an Autistic person is told to pass for normal, we are usually told AAC is not allowed to communicate with others. The people we interact with tell us that we must speak through our mouths.
2) When an Autistic person moves differently through ticks and stimming and the way we walk down the street, we are told that we must not do that and in fact must ‘Quiet Hands’.
3) When an Autistic person desires to be by themselves, non-autistic people think it’s weird, unusual, and/or strange making us look like freaks and weirdos.
4) When an Autistic person fulfills a dream of a painting, writing, music, inventions, or other special interests so the world can enjoy something from us, we are often told we are obsessing over things and to enjoy life without thinking.
5) When an Autistic person wants to spend time with animals more than people, we are told to spend more time with people.
6) When an Autistic person prefers to hang out with other Autistics because we feel less pressure to pass we are often told our Autistic friends are too weird.
7) When an Autistic person interacts with non-autistic people, we are told we lack the social skills necessary to interact with them. However, we are often not taught the real social skills (check out the REAL social skills) and often are only taught social skills from a child-like or very basic thing.
8) When an Autistic person is advocating for themselves and the Autistic community, we are often told we are being rebellious, obstinate, or misbehaving.
9) When an Autistic person uses their voice to speak, we are often told to lower our voices or raise our voices. We are never encouraged to use AAC (Augmentative and Assistive Communication devices) unless a non-autistic person truly has trouble understanding the Autistic person. Then, the non-autistic person typically mocks or mimics the Autistic person who uses AAC.
10) All too often Autistic people are mocked or mimicked for being Autistic and used as the ‘joke’ or for ‘comedy’.
By these Non-autistic ways toward Autistic people, we are far too often not allowed to be our authentic selves. Autism is a different way of life, it is a different dialect, different language, different way to move, and different sensory experience. Every Autistic person expresses autism differently. That is the beauty of Autistic culture.
Believe it and hopefully those non-autistic people stop making Autistic people feel too anxious to ‘pass’ for a normal that is too stigmatizing from the medical model. Thus, we are far too often stereotyped as well and for those Autistic people who do try to conform to the normal way from society are far too often objectified or seen as ‘posters of inspiration porn’.
AAC is important to me for communicate like any other Autistic person, but like many others like myself have always been told to ‘pass’ instead.
There is a difference between ABA and floor-time, and there is a difference in what we really can do for my Autistic peers and I who need to be able to live self-directed lives. We need to realize how much the autistic spectrum can relate to themselves and how non-autistic people can enter into the Autistic world. Being an Autistic person means so many things, but their are some non-autistic people who still do not get it. However, there are some non-autistic people who do get it.
This post is going to be a list of what non-autistic people can do to help the Autistic community better self-direct our lives:
1) Stop and think before giving advice or direction to an Autistic person when we have not even asked for the advice or direction
2) Teach any Autistic person from the time they are a child that they run their life
3) Makes sure any Autistic person takes responsibilities for what they do from the time they are a child
4) Always include any Autistic person in conversations about them, always remember ‘Nothing About us, without us’.
5) Never demand any Autistic person is doing something wrong and that they have to do it ‘your’ non-autistic way. Let us be who we are!
6) Allow any Autistic person to identify however we choose, not the way any non-autistic person wants from us, i.e. do not instruct person-first pathology language.
7) Autistic people want to stim to help us through our lives, never say ‘Quiet hands’.
8) Never assume any Autistic person who is echolalic does not have a voice, everyone has their own voice with our own thoughts, ideas, and expressions.
9) We are human, we all have free will, we all have free choices, and any Autistic person is able to live inclusively in the community as long as non-autistic people do not tell an Autistic person how to live their life.
10) Don’t assume any Autistic person does not know, we are more capable of understanding things than non-autistic people assume.
11) Autistic people who do have tics, are able to do things too, we have tics, but it does not mean we are anxious.
12) Autistic people have been stigmatized by the society as a whole by so many other cultures in society, do not make assumptions about our abilities or disabilities.
13) Bullying any Autistic person into silence to speak the way non-autistic people speak is taking away the rights every one in the human race has.
14) Social skills is a human experience everyone learns about each day, so stop insisting Autistic people need to learn social skills from a non-autistic person. Every one needs to learn the real social skills, not the gibberish that is taught to Autistic people every day. (no one is a social skills expert)
15) Autistic people need to know we can set our own boundaries and are taught that everyone has their own space from childhood to becoming an adult.
16) Stop harping and hovering over any Autistic person’s daily life and allow any one to make mistakes. If it feels good to an Autistic person, than work with that so that it works well in society even when an Autistic person who has sensory differences from non-autistic people in society.
17) Do not label any one with how they function, who is it to you as a non-autistic person to label any one as ‘low’ or ‘high’ functioning? Functioning labels are a way to stigmatize and hurt Autistic people.
18) Give us some time for our own life to make our own decisions and preserve self-determination.
19) Being Autistic means we are Human too which means we can decide our own destiny and think critically.
20) Let any Autistic person use AAC (Augmentative and Assistative Communication) when we want to use it to communicate with any one in the community regardless. Communication is key in our life too to allow our voices be heard!
There are probably more, but for now this is good enough!
I know I have not posted in a while, but I have been very busy with my first semester of graduate school at CUNY School of Professional Studies studying Disability studies.
By the way, check out my project from class at the website I created with my classmate, DISQUAKE!!
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)
However, I have been struggling to communicate with people my whole life from speech difficulties, being Autistic (not being a mainstream general person), and living my life as a person who cannot understand the jargon most people including my family tries to convey to me. This is when self-advocacy becomes important especially when I need my space too, understanding other people’s words spoken to me, and knowing when to communicate with or without my mouth.
Communication is key!!
But, my communication style has always been a struggle for others to understand. I do have echolalia, I do have multi-sensory issues, I do stim, I do think visually, and I love listening to people through music and I do love to dance like my papa Dave did!
Communication is key!!
Struggling to communicate is improper with people who struggle because everyone needs to interact and speak in a standard way through vocalizing thoughts through the mouth from mainstream society.
What can we do? What are we able to communicate to others when there is a disconnect especially with families and their Autistic children and siblings?
Connection is good, however when there is too much disconnect between families and their Autistic children or siblings, there needs to be a meeting point of each other to meet half way. By meeting halfway, we need to communicate by seeing each other at the right distance without seeing too far or too close. This is a problem for all families of Disabled people and Disabled people themselves.
Communication is key and the social model is much better when the medical model has caused so much pain and stigma!!
When can communication become the right when all of us who need to connect with each other? When can we understand and accept each other regardless???
Language is individualized for each person. Self-determination is important for everyone while the importance of connection continues through learning from each other, learning on our own, and not being dependent on the system being medical model or stigmatizations society give us.
This is all the things to think about as when we need acceptance and understanding during the month of April for Autism Acceptance Month.
Remember communication is a two way street of understanding each other without getting too stressed, too angry, too overreaction, or too hurt from pain causing other’s too much pain too. I have felt pain in my past, but now it’s time to move forward and be happy as I remember the very need to maintain myself to continue to be positive!
Love my family, love all my friends, love all my support network, and love the world.