Tag Archives: supported decision making

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

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

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,
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 I 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,
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 “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 “To Please Yourself is to not think of anyone else”

To Please Yourself is to not think of anyone else,

by theamazinJ

It’s my life,
and no one else’s,
it’s my life,
even when people disagree,
it’s my life,
even if anyone disagrees with me
my whole life too,
it’s my life,
I choose things in my life
for a reason,
as an activist,
as a person who is
committed to human rights,
disability justice,
self-determination,
and with the rights
everyone has of supported decision making.
As a person who
does not like
the way the world is today
from the many discriminations
and injustices that are serving
everyone living today.
From the ideas of
the way society uses
the medical model
to hurt so many people,
and the way
everyone hurts,
not everyone understanding each other,
that because of this
there is disability culture
separate from non-disability culture
and because of this
I saddened to know
that from the two different cultures
not understanding each other,
universal design is not realistic,
and too ideal,
because there are
too many non-disabled people
who think of only themselves
and there are
too many disabled people
that are angry about this,
that can this war over words
really end?
can this war over words really end?
The war over words,
eventually leads to violence,
eventually leads to a tougher life,
and eventually leads to
everyone learning the hard way.
Our lives are good,
as human beings
we have the ability to love,
we have the ability to understand each other,
we have what it takes to serve justice for all,
but many do not want justice,
many are too complacent,
too complicit,
and many just want to live in LaLaLand,
while many just want to think about the medical model
without considering life
and what living life really is like,
even when someone gets a diagnosis,
even when someone seeks surgeries
for that diagnosis,
or even alternative treatments.
Some of these treatments
are imperative and can be fatal if not treated,
while other treatments
are a choice from the person, the individual,
to live their life treated to
live under the current social construction
as who they are without seeking to pass,
or live their life different than who they are
choosing to seek treatment to
pass and please people in society.
Everyone has their choices to make,
the ultimate choice is,
please yourself or please others,
and whatever you please,
there are consequences and rewards,
you just have weigh in on
the choice that best fits your life,
but remember this,
even when you are anxious over this decision,
asking too many people what to do,
and not relaxing and letting things happen,
you still must please yourself regardless.