Labels are important,
they can be very powerful,
when one is called stupid
to when one is called crazy.
Labels are important,
they tell the kinds of things a person is.
Labels are powerful
like when we are called Brilliant, Honest, or a Liar.
Labels can hurt or be very respectful
especially when using the words,
Racist, Ableist, Abuser, or even Loving.
Words can hurt, but they can also heal.
I love you. I hate you. I despise you. I am in awe of you.
Labels are NOT just for cans, they are for everything and everyone.
It’s why TAXONOMY exists, it’s why we always use them.
Labels are important.
I love you,
I hate you,
I filter you.
I am so in love.
I am so in anger.
I have anxiety for you.
Labels are important.
Labels are important.
Labels are important.
Labels help and can also hurt.
They hurt when we use the R word,
they hurt when we use the N word,
however, we spin a word around
and make it a different word with a different meaning
Like for the R word, Rich,
and the N word, Neighborly.
When we think of words,
we need to think of the positive words
and the positive meanings
and when we want to criticize,
instead of saying,
Ableist or Racist or Misgyonist or Sexist or Heterosexist or even pervert,
we need to treat people with respect and positive their whole lives,
once we label a negative word to a person
it sticks with that person for life.
Life’s journey is saturated with labels,
it’s saturated with bigotry,
it’s saturated with misunderstandings and miscommunications,
So, does labels go on cans and people?
Of course they do, they do every day.
So, it’s labels important?
Yes, of course they are.
Labels were created because of TAXONOMY,
because of categorizing,
but we can label things giving people something to live up to,
or we can label things giving people a dark windy tunnel to run through
trying to find the light.
sometimes we have to realize,
Being disabled is a part of life and is not a bad word,
we have to realize being Autistic is a part of life too,
we have to remember being Neurodivergent is a part of life as well,
and that society’s so called ‘normal’ is derogatory
even when called ‘neurotypical’ now and even
the way everyone embraces that social construction of ‘normal’ or ‘neurotypical’.
TAXONOMY is important, and labels are so powerful,
Just think about the labels
and you can think about your life.
Labels that are given to and accepted by individual citizens
do in fact define a person,
so think about when you call a person crazy, stupid, insane, ugly, overemotional, or even irrational,
how much pain you may be causing someone,
and may be you may want to use more positive words about anyone,
like intelligent, creative, loving, caring, and even beautiful.
Words matter, labels matter, labels mean everything.
The social construction of ‘normal’ is important, but not very logical.
Just remember being disabled or being neurodivergent is a thing
A Different Normal, A Normal different me, Different Kinds of Relationships,
Thinking of me, think of you,
Thinking of you, me,
Thinking of what ‘special needs’ that really aren’t special because they are just our needs,
thinking like you think I can do things that are very hard for me,
and thinking you think I can’t do things that are easy for me,
I have a lot of energy, but I am disabled.
I am able, yes, but I am also disabled.
Disability is part of the human experience and everyone needs to embrace their life and love everyone every day regardless
because at any point, life can be over, or we can become disabled or more disabled even…
I can become more disabled any day like you can become disabled at any time.
and you will still see and think I can do things all the time even though I am disabled.
Normal is different, normal is fake, normal is unreal,
I am disabled, and pushed to the brink of my energy, my time, and my limits,
even when my spoons are low or my lifely body portrays you to think of what you think,
You tell me to use my spoons wisely, so as not to burnout,
you tell me to work on things of what you want me to work on,
when I am who I am, even with what I can do and can’t do all the time,
even with being able to do anything at any time I am able to do it,
I can’t do anything everything everyday, but I can do anything at my time.
I noticed I do things when my feeling to do the thing
I want to do is when I have the spoons to do it
and decide to focus on that thing I want to perfect or just want to do or just need something to do to feel good,
Disability is a thing, it exists, and we have to accept
the things we do, things we don’t do, and things we have the spoons for to do the thing we are doing,
I am different, yes, and most importantly, I am disabled and able,
I able to do things on my time, when I am ready, and when I have ambition, and when I have determination to do it,
My normal is different from you, different to you, and very potent to my life,
I can do, I do need support, but I don’t need you to tell me or what you think I can and can’t do,
What is support,
Support is different because support is helping someone like me achieve self-determination of what I want to do, of what I need to do, when I am ready to do it,
Support is giving me the time to live on my own in my own living area with my own things and seeing you when we have time for each other,
Support is giving me the opportunity to do what I want and what I choose for myself and supporting me while doing it,
even when I am writing something on my own, even when I am doing art, even when I am creating film, even when I am reading on my own, or even when I just need space,
Support is giving not what you think, it is not giving me love when you think you want to give it, but reading me well enough to know when I want it,
Support is giving you love when I feel you want it,
Support is not telling me rather just giving me the opportunity to talk about certain things that are hard for me to talk about,
Support is not telling me, and thinking I just don’t know and am told, and support is being included in conversations about me,
Support is great when I am supported and not told, supported and loved, supported and can talk to you about things that are hard for me to make it easier,
support is when my anxiety is eased because I don’t feel pressured, I don’t feel told, and I am feeling in control,
I love my support regardless who you are,
I need support in certain areas just the way anyone else needs support in those areas, so just give me a chance to tell you what support I need and when I need it,
and I will listen and know when and who can support at the time,
so please understand what support really is.
Support when I need you,
Being told is not a good feeling, being told makes me feel out of control, being told I can’t connect with everyone is limiting me, being told is being out of control,
I need your support and finally understanding,
I need your support so that I don’t walk away in pain when I feel you don’t understand and am low on spoonful energy, and need time to reconvene myself to you, or even when I feel hurt,
even when you don’t understand why I am walking away even for a day or even sometimes longer than that,
It does not mean I don’t love you, and it does not mean I don’t care, it just means I need time because of the way you approach me or the way you understand things about me makes me cringe,
I need your support so that you know the love we give to each other when we all need love,
I need your support.
I know I left you at times, some longer than others, but I need your support, not your telling me, and not your ridiculing me, with easing on sarcasm, and definitely not your abrading me as if I feel like a nothing,
I am a person too even though I am disabled, even with being autistic, or even with my anxiety, or even with my sensory system, or even with my way of understanding the world,
or even with my way of feeling for you,
because I love you, I love all of you,
I love the way everyone loves me.
I am grateful for the love for me.
Support is when my life is not empty, and I have someone to go to talk with about something may be hard to handle at the moment
ultimately giving me the power to make my decision as the decision maker in my life.
I have services that give me my support workers, that give me my broker, that give me an agency too, that give me someone looking over my money I get for my services,
but that does not mean I need to be told, I just have a team of whoever wants to support me any time I need it and give me the time.
I love you, I love everyone because I am loved by all, loved by everyone.
I left you for a reason that left me needing my space away to have enough spoons to deal with you and think about ways you can better support me,
I needed this because you seemed to not understand, you seemed to think you knew everything even without listening to my thoughts, my opinions, my ideas, my creativeness,
and my learning about history and knowing how I feel and what I believe to make the world a better place,
You may not understand how I want to make a better place, you may not understand my art, but I do understand and have a sense of what I want.
While I left you because I felt like everyone left me in the dust without any support without any kind of things I owned before and needed to go back to the family who I needed space from at the time I walked away with you who tried to help me at the time
so I can get my spoonful energy back and reconvene myself to the world,
I know I hurt many people, I know I hurt by not talking that much to first the family in my life, and being silent to all a way long time,
I know I triggered everyone from either leaving without letting anyone know to triggering in many other ways,
when it comes to triggers, we can love and be loved, but there needs to be communication in every relationship especially when communication gives and creates agreements of supported decision making within those relationships I choose to have agreements with,
between me and the people I choose in my life for support and what kinds of things I need for support even as a disabled person with being autistic.
Having support from people means my anxiety is low, means I am in control of what I want regardless, and means everyone understands me, and understands what makes me tick and what doesn’t.
And with that being said, even with bleeding love coming from our veins, it just pushes us closer to the support we all need in our lives.
I hope you understand,
I hope you know I love you,
I hope you know what support really is.
And, most importantly, I hope you know how much I love…
I feel the frustration,
is it normal?
Is it supposed to be passing for norMAL?
WHAT IS dammmit, NORMAL?
OMG…I CAN’T BELIEVE THIS!
Oh my goodness, OMG, Oh my GOD!
NORMAL, what can I say?
NORMAL, it is hard
It’s like very few can pass for it,
yet MANY embrace it.
It’s so very stimulating or in this case,
TRigGERRing to have to pass for norMAL!~~~
especially when I am not NoRMAL,
including my friends who are not NORmal either,
or even whenever I walk down a street
I see MANY struggling to be NorMAl,
NORMAL is a social construction,
it is passing for…
what America wants,
it is passing for…
being non-disabled or NON-NEURODIVERGENT,
also, when EVERYONE is born NEURODIVERGENT,
but only PASS for NORMAL
and embrace NORMALITY
Oppress The MANY citizens out there who CANNOT,
you are NEUROQUEER,
OR even when
you are not one of the BINARY genders
when gender is FLUID and is non-binary,
NOT saying I am non-binary, I AM JUST OPEN-MINDED
to everyone’s gender differences and EVERYONE’s iDeNTitiES,
and the self-determination of being WHO WE ARE INDIVIDUALLY,
and being the person we are MEANT TO BE and ARE in this world.
NOrMaL, what the heck is it,
when it’s all about when WHITE MaLE Christians who created the damn word many years ago,
who wanted EVERYONE to conform to THEM,
and who WANTED everyone to be non-disabled, non-neurodivergent, and labelled by IQ.
AND, who also wanted EVERYONE to look, feel, and think the SAME way,
How NORMAL is that when SO many are different races, of different religions,
of different thinking types, of different emotional types, of different FEeLIngs,
OF different concurrences acting at the SAME time,
OR of different lapses of time splitting in their heads,
and of different genders and differences in disability,
BECAUSE everyone can DO it,
NO one is IMMUNE to think differently, WE are CREATIVE which is WHY normal was made,
which is why things are DiFFerent.
MORE importantly why WE all make MISTAKES especially with TRY(ING) to NORMALIZE America,
and in many CASES NORMALIZE the WHOLE WORLD, but many CANNOT be NORMAL,
MANY cANNOt think NORMAL, many CANnot feel norMAL
because NORMAL is painful especially when someone is disabled,
especially painful when someone is NEURODIVERGENT
when being NeuroDiVERgent is not VERY embraced
and people want to accept NORMAL as the ‘in’ thing as the BRAINS and the one with IQ,
and neurodivergent as OUT, as the ‘OTHER’, and the one that is WEIRD or FREAK or INCOMPETENT or
STUPID or even the re2379427d,
eVERyone is really neurOdivergent, but many seem to discount it, seem to disregard it, or even THINK SAMENESS is the ‘in’ thing,
when EVERYONE is really different,
everyone is really …
CREATIVE, emoTIONal, lEarnING all the time, brainy, INTELLIGENT, gaining WISDOM everyday, has their own WaY of doing things.
while everyone can …
BREAKDOwn, everyone can..
hit rockbottom to only rise to the TOP,
MAKE a MASTERPIECE OR Make an invention OR make a discovery from within themselves that CREATES connection
and CREATES something with their MINDS even when it is just very small BECAUSE it really is VERY BIG for the world,
just like NORMAL was and just the way NORMAL was created
ESPECIALLY when normal is destructive to a human being’s personhood and just when normal can also construct certain elements of life,
because normal is paining and hurting MANY in this world
our peers who are not of the binary genders like you or I,
our peers who are NEUROQUEER
our peers who are a(sexual) or even sexual,
OUR peers who are mixed race, or not of the same race as you or I,
OR the way me and my peers who believe in different religious or spiritual thinkings,
or how many citizens who are disabled, neurodivergent seem to experience the world differently
even when the disability and neurodivergence is autism,
or even when it is cerebral palsy, down syndrome, or many other different developmental disabilities
because having developmental disability is NOT considered normal and is not considered intelligent and
seems to always associate with judgement, always associates with stupidity and incompetence and not knowing what is right or what is wrong,
because in the end, it’s normal, it’s abnormal, it’s just living, it’s just life.
Being developmentally disabled is
being more INTELLIGENT than peers who embrace normality can even fathom,
its’s being more FUN and comical than one can even think about,
AND, is being more empathic and CREATIVE at the same time than any other citizens can even feel and think,
Being developmentally disabled or even have psychiatric disability is a thing, but it does not have to mean the person has to be this normal…
or has to abide by the rules that the leaders of normal created years ago,
Being developmentally disabled and having psychiatric disability is part of being human,
It’s a way that life sets us off, it’s a way to experience the world, and it’s a way of being intelligent differently,
since anyone of us can have psychiatric disability because it’s part of human experiences,
and developmental disability is a thing that happens to many, but not all, as a way to know being human is IMPERFECT,
and being human is MORTAL, and being human, everyone will have different ways to express the genes of the human race,
EVERYONE is GREAT, everyone is GOOD, and EVERYONE thinks different, and MOST importantly NORMAL was just a story or concept created but does not have to be embraced by anyone.
I am male, I am neurodivergent, I am autistiC, I am Jewish, I am spiritual, I am a artist, I am a beginning filmmaker, I am a scholar, I read many books and articles, I am a poet,
I am a person of science, I am many identities, I always have my own mind,
and most importantly,
I am J.
(Written after reading the article Blind Rage, in response to Helen Keller, by Georgina Kleege)
(This poem is something that is in the works for a poetry anthology I am doing for class for my masters program at CUNY. I am working on doing annotations for each part of this poem that requires an annotation which is why there is numbers associated with certain lines as well as 4 other poems I chose to annotate as well. I also used gender neutral pronouns so as to not identify. Since my natural tendency in writing is short bursts of words rather than longer sentences from my own Autistic language which is my own Autistic Poetics and my professor likes that. And, I will be filming this poem this week for my non-credit film class.)
My feelings of disability 1
come from the distinction of an honor,
but to many a tragedy,
from the way we see people generally,
to the way we converse,
from Kanner’s views of autism,2
to Asperger’s views of psychopathology, 3
to the beauty of movement
from the ideas of Tourette’s4
spilling out my gut,
without my insincere moment,
from the way Elephant Man5
physically felt stigmatized
and ostracized to the
way my moment of
my life lives.
To the way I fill the moment
of my influence,
to the moment of
how the intersection of
autism and Tourette’s
go hand in hand
even with dyslexia6
with the acts of disability
in American culture.7
My life is good,
stop and wonder,
my life is good,
I don’t care what you say,
from your misunderstandings,
from your lack of empathy,
of your arrogance,
of your immaturity,
of your future of me one day,
when I surpass you.
I pain, I forgive,
I am me,
So get the hell out.
My disability of autism
My disability of anxiety 8
is a swirl of energy and rage
to be controlled.
My disability of movement
makes me move differently
than I am and you are.
I move with ease.
I move with fluttering hands and feet.
I fly my hands in the sky with flapping,
I shadow my feeling in the darkness.
I crawl into a hole.
My disability is discomforting.
My disability is not accepted.
I feel over anxious from
the already anxiety I feel
I feel I don’t love who I am
because I am not accepted
under this social standard, 9
this social construction society created, 10
and under every one telling me without
And, if I don’t want to be told,
that I am not supported by anything.
It’s life giving me serene beauty without
touching the beauty.
I love things, I love animals,
I always and sometimes love people.
I feel conglomerated
by society by the people
I need to be forgiven for I am,
yet, everyone wants
to change me for who I am right now.
I am, right now.
I cannot just be
I cannot just do
I cannot just say
I want to say
I want to do,
but in reality
i am unforgiven.
I am forgettable,
i am not working
like the way
They is worthy, 11
They thinks is worthy,12
They thinks they is the Queen,13
notes them and with pride,14
exacerbates who they is
in a low key manner,15
They seems better
but really is not,16
They moves in to build peace
but cannot really17
They talks about sex
but takes it too far18
They passes with ease
causing more pain,19
the way Them projects who they are,20
Them uses their anger to shell out to others,21
They thinks the world revolves around them,22
how they thinks they can speak with AAC
even saying how proud they are of autism,23
even the way they takes on
how others feel and does not know their own,24
or even the way they attempts to
say Autistic men are more likely to be pedophiles
from an article from 2013,25
or how they thinks they can find causes
which they thinks can take away the pain
and cure autism even though that just
causes more pain in order to pass
and not be real,26
or even the way the anti-vaccine movement
thinks they knows everything, but knows nothing.27
or how every Autistic leaders feel,28
or autism researchers think about Autistics,29
because Autistic or not, I feel
humanity is real,
but humanity sucks
from the way we are all judged,
but humanity is not normal,30
and normal is done,
normal is succinct,
normal is seemingly joyous but
with eagerness to feel pain,
to feel suffering, to feel like less than,
but most importantly
feeling like a marshmallow,
feeling like I don’t belong
and everyone can move me
in the direction they want,
and my anxiety soars everyday,
and cannot stop
because everyone tells me and
no one wants to be told
and no one supports, but support is
good is better and helps a person
achieving identity of largeness in my hands,
my long legs ache, my arms are in pain,
and I just feel like embarking on something special
as every other human being
is special, is unique,
and not more, not less,
and a part of the life
we live today.
It’s the way Neurotribes was written31
and even with In A Different Key,32
because Autistic history is real33
when it is really
the history of the Human race.34
(Happy Autism Acceptance Month 2017!)
The poems in order will be :
1) Autistic Rage poem
2) I am not retarded poem
3) I open at the close poem
4) Tyrant and Martyr poem
5) Poem of Apologies
(Now each poem will have annotations based on the readings I read this semester with other readings (books, articles) I have too.)
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)