Tag Archives: disability

A Poem Called “A Different Normal, A Normal Kind of Me, Different Relationships”

A Different Normal, A Normal different me, Different Kinds of Relationships,

Thinking of me, think of you,

by theamazinJ

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,

by theamazinJ

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,

by theamazinJ

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…

And here is a song by Leona Lewis:

And Chasing Cars:

A Poem Called “Autistic Rage”

Autistic Rage,

(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.)

by theamazinJ

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,
I hurt,
I pain,
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 hurt,
I pain, I forgive,
I forget,
I argue,
I say,
Get Out,
Get Real,
Get images,
Get going,
I am me,
So get the hell out.

My disability of autism
is interesting.
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
from society.
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
supporting me.
And, if I don’t want to be told,
that I am not supported by anything.
It’s control.
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
around me.
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
or
They thinks is worthy,12
or
They thinks they is the Queen,13
or
They
notes them and with pride,14
or
Them
exacerbates who they is
in a low key manner,15
or
They seems better
but really is not,16
or
They moves in to build peace
but cannot really17
or
They talks about sex
but takes it too far18
or
They passes with ease
causing more pain,19
or
the way Them projects who they are,20
or
Them uses their anger to shell out to others,21
or
They thinks the world revolves around them,22
or
how they thinks they can speak with AAC
even saying how proud they are of autism,23
or
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 jerky,
feeling like a marshmallow,
feeling geeky,
feeling like I don’t belong
and everyone can move me
in the direction they want,
and my anxiety soars everyday,
every night,
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
achieve self-determination,
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.)

A Poem Called “I am not retarded”

I am not retarded,

by theamazinJ

I can think for myself,
I have a mind of my own,
I am a Masters student,
I am a filmmaker,
I am an artist,
I am a poet,
I am a person,
I am not less than what you think,
I am an independent citizen,
I need support like everyone else,
I am capable even though I am disabled,
disability does not mean I am hidden from society,
disability does not mean I cannot say “I am disabled and proud”
disability does not mean my voice does not matter,
disability does not mean I can’t do anything,
disability means I need to structure my supports
and build a supported decision making agreement
between my supporters
as myself being the decision maker
like you and you and you in the world.
I disagree with people
as much as I agree,
I do not agree with you on some things,
but I agree on other things,
and that’s okay.
I can speak out on what I believe and feel
an that’s ok because it’s how I feel
and it does not mean
I am too easily influenced or ‘brainwashed’
because being ‘brainwashed’ is not even a thing,
it is a social construction, it is not even real,
and it is figure of speech of
someone’s imagination to make a person seem crazy,
to make a person feel disregarded as a person,
and to not allow a person to take responsibility for their choices
even if the person felt at the time
to choose something for their own self-care,
even if it was for their own way of
making meaning with the world,
my own way of growing and maturing
and doing things on my own,
to get to an understanding of what
I can do without the world telling me otherwise
as if I need to always be told
as if I am child and not the adult that I am.
Presuming competence is so important,
it is so liberating for everyone
because the social model of disability
is not about discrediting medicine,
it is about self-determination
it’s about de-stigmatizing what the medical model did,
so disabled people make their decisions
and using accommodations even it is from medicine
to help a person live their life,
even if they need other accessibilities
to do this as well,
even if many do not understand the
social model of disability,
that’s ok, but please don’t discredit it,
don’t discredit an individual’s right to make decisions
based on how they may feel at the time,
allow leeway in may be taking responsibility
for why the individual chose that decision at the time,
may be it wasn’t all about the individual’s behavior
maybe it could have been the way
the individual felt from the behavior
of the people around them.
Relationships are a two way street.
Everything that happens is never one sided,
it is never the fault of one person,
everyone can always take responsibility for
every decision that is made by an individual.
There is a reason why things happen,
and sometimes that reason needs to be known,
sometimes the reason is projected on the decision maker
because the other people don’t want to
feel bad or don’t want to know they might have done
something wrong.
There is never what someone did was wrong
like there is never what someone did was right.
Every decision we make is something we did
from how we felt at the time.
Everywhere we go, every decision we make,
are decisions that may have been
tough for us to make,
but it was decisions from our path
to help us grow,
to help us mature,
and to help us further our destiny
to live our life.
Every decision an individual makes
is by how we felt
and whoever was around the individual at that time
including the individual
who needs to take responsibility for that decision.
Take responsibility for yourself
and most importantly take responsibility
for every other person as a decision maker
regardless of who the person is or was
even if person is disabled or
even if the person is non-disabled.
It’s not all about you or them,
it’s all about the decision that was made.

A Poem Called “Nothing About Us”

Nothing About Us,

by theamazinJ

Everywhere we go,
everywhere we look,
We see destruction,
we see walls being built,
we see the development of institutions,
we see the lack of community building,
everywhere we go we see Donald Trump’s face
in place of the faces from the 1930’s,
where in 1927, Oliver Wendell Holmes
from the U.S. Supreme Court
finished what was started in America
where the dark history of America
helped stir the pot in Germany back then,
where even today
many people still keep in mind
what American History is really about,
keeping the rich richer,
and about building a fascist state of mind,
while The U.S. Supreme Court in 1927
from Buck Vs. Bell
secured a statement
that is still in everyone’s minds today
stirring the message over and over in their heads.
The message was clear, the message was disturbing,
and the message was concrete,
when Holmes said “Three Generations of Imbeciles were enough…”
It allowed the preconceived notion
that the medical model of disability will dominate,
it also allowed Americans
to build a war against each others
against society
and against disability
while at the same time
trying to prevent disability
and not only that,
but eventually labeling
everyone ‘high’ functioning or ‘low’ functioning,
and even establishing medical charity organizations
to this day
to use this rhetoric from Buck vs. Bell
even more than they had done before
to establish a society of sameness,
a society of perfect bodies,
a society where there would be lethal forced euthanasia,
a society where there would be eradication of certain peoples,
and a society segregating people
by class, by gender, by race, by sexuality, by ability,
and by religion.
This is the society Donald Trump wants,
this is the society that Paul Ryan hopes for,
this the society Mitch McConnell strives for
and what Mike Pence asserts every day.
We need to stop this from happening,
we need to embrace every part of humanity
every day of our lives,
with supporting each other,
and encouraging everyone
while remembering
why we are here on this planet,
and how we can rely on each other everyday for support.
Society is interdependent,
we are not finches,
we cannot take Darwin literally when he said
it’s ‘Survival of the Fittest’,
because humanity is different,
humanity is supported,
we support one another,
we support other animals,
we support other kingdoms of taxonomy,
we support the climate of this great planet,
if someone is sought out to destroy this diversity
then we need to sought out justice to the people
wanting to harm and wanting to do this,
because we need to construct
a world of love for this planet
and everything and everybody that is on it,
no one can take that away
and no one can segregate or harm another,
in the end,
its our duty to take care of one another
regardless of who or what we are,
regardless of what kinds of supports
the person needs to achieve their own self-determination,
because we cannot be influenced by
Donald Trump’s establishment or Paul Ryan’s anger or Mitch McConnell’s fury,
or even Mike Pence’s ignorance,
To be truly United,
we need to include everyone,
we need to build community,
because disability is part of the human experience,
but is also part of living organisms,
and we need to remember,
Nothing about us, without us
is Nothing about US.
Everyone supporting one another, is not controlling anyone regardless,
that’s what democracy is really about.

A Poem Called “It’s Not About Inspiration”

It’s Not About Inspiration,

by theamazinJ

Jerks, Assholes, Taunters, Real,
Inspiration?
We can all be jerks,
we can all be assholes,
we can all be taunters,
We are all real,
but we are all not inspirations.
I am not your inspiration,
and you are no body’s inspiration.
Inspiration is being a jerk,
inspiration is a being an ass,
inspiration is being a bully,
inspiration taunts us,
inspiration is not being real,
inspiration is being anything but real.
Disabled people are not your inspiration.
Autistic people are not your inspiration.
Inspiration is real, yes, but
we need to think of it as something within us,
not from outside of us.
Inspiration, yes?
No, inspiration, no.
Everyone is a jerk at some point during the day.
Everyone spins what they want others to understand about life.
So, why pity someone for who they are?
So, why not act like everyone is a person, disabled or non-disabled alike?
Disabled people are jerks just as much as able-bodied people are!
Disabled people are citizens just as much as you are.
I am disabled, but I am a citizen.
It does not matter what impairments or how severe the impairments can be,
no matter who you meet, everyone is a citizen.
The more we think this, the more we act it,
the more we remember being a citizen has many attributes,
whether able-bodied or disabled.
As a disabled person who can be an asshole or be a understanding person,
or as a able-bodied person who can be the same,
disability does not mean lacking humanity or being more than humanity,
disability is humanity.
Disability has varying degrees of impairments,
and impairments can be expensive to support depending on what is impaired
and how severe the impairment.
When thinking of being human, let’s think of all the variables of being human,
there are times when people are smart,
there are times when people can act stupid,
there are times when people can be an ass,
there are times when people can be a moron,
there are times when we people don’t think things through,
there are times when everyone plans out everything,
everyone takes disability too seriously and tragically,
when disability can affect anyone at any time in their life,
depending on when it strikes, what it strikes, and how it strikes,
depends on how the person reacts to disability.
There is no more putting down disability,
there is no more thinking disability is more than life,
there is no more disability is the end of life as we know it,
because disability is what makes life interesting,
it’s what makes life real,
it’s what makes human life being human
and being mortal and being imperfect
in a world that is constantly changing,
in a world that is rapidly transitioning,
and in a world that needs to normalize disability
as being the norm of humanity.
So, in universally designing society
we need to design structures and events
to allow however a person moves,
however a person communicates,
and however a person learns
to allow a person to applaud and flapplaud simultaneously
and allow a person to sign, talk, and use assistative technology
with ease without lurking, without staring, and without belittling or teasing,
because in the end,
universal design is about recognizing everyone however they are,
and not enabling them to be martyrs,
without enabling them to be inspirations,
and just letting everyone live the life they want to live
with their families, with their friends, and with their communities,
with the self-determination they want to self-direct their life with
even if it is choosing to live in the community
or choosing to live in a congregate setting.
Finally, its the choices that we learn from
that makes up our humanity.