I am realizing that I feel Wolf Wolfensberger is partially correct about something important that a lot of disabled people don’t want to acknowledge. I am para-phrasing; People with disabilities for the most part should leave advocacy to non disabled people until disabled people can separate their grievances from their advocacy.
As a disabled person myself, this has happened to me a lot through the years. As an advocate, disabled and non disabled people have to be impartial. By being impartial, every advocate needs to be open to both disabled and non-disabled perspectives.
I feel Wolf was right and wrong. As a disabled person, I can become impaired due to my emotions, which can affect my ability to advocate a particular issue. Can anyone relate to this?
I have noticed some ppl who are supposed to be family advocates fail as advocates because they either feel for the family members or the disabled person. This is due to the family advocates’ impairments from their emotions. So Wolf is right in that sense. He is wrong in another sense because disabled people can learn to advocate with experience and learn how to separate their emotions from their job as advocates, just as non-disabled ppl can.
Families and agencies misconsrue the ideas Wolf Wolfensberger said, which is why many in the disability community are so angry with what Wolf said.
I feel this way also because in my observations with agencies who serve the disability community, too often when the disabled person from the agency advocates, the agency only supports them with the agency’s advocacy.
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…
(Initially this poem was entitled a different name, but I changed the poem title. I changed the title of the poem because as a disabled person myself, I need to be careful with my own internalized ableism as all of us disabled people have internalized ableism to deal with all the time. The original title was using my own internalized ableism to try to use a word that society uses toward disabled people like myself all the time, but and say I am not that.Â Society uses disabled people to accept internalized ableism so that disabled people can accept the ableism of society. This is an issue most of us in the disability community have to battle with in societies including the western societies. Thank you for reading this site and enjoying reading my poems.)
I can think for myself,
I have a mind of my own,
I am a master of myself,
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
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 any 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.
crying for help,
hurting from the pain
from everyone around
who don’t appreciate,
from everyone who
don’t understand life.
Arguing with each other,
swinging the bodies in disgust,
feeling out of control,
the starchness of who we are,
as disabled people,
as we are neurodivergent,
as we are told to pass,
as we can’t be who we are,
as everyone becomes robots,
as everyone’s movements become fixed,
and the way we communicate become stuck,
without moving in the way that we are free,
without speaking with our true voice,
and speaking, moving, and guarding ourselves
in a way society wants.
It saddens me society doesn’t understand,
it hurts me society won’t give respect
unless these things are done,
and everyone does what is necessary
to be considered intelligent,
unless everyone speaks, moves, and intellectualizes in a way
society wants it
to gain the respect we should have had all along.
Society can be funny.
the physiology can be different than the way society actually is,
the way our brains work,
the way our bodies move,
and the way our spirit is to make a difference,
everyone is here for a purpose,
everyone intellectualizes differently,
everyone has different thoughts,
everyone is here to get their voices out there,
to debate, to argue their points, and to listen
however we all listen,
we are not here to be robots,
we are not here to be clones,
and certainly we are not here to be different than who we are.
Everywhere we go, everywhere we burst into a room,
every time we open a door,
we open the door to another opening
to another meeting,
to meeting more people,
to seeing what we can see,
to hearing new things
and to meet with new partners,
eventually committing to a partner if we choose.
Sometimes we have positive thoughts,
sometimes we have negative thoughts,
and many times the positive and the negative fight together in our heads,
creating anxiety and not knowing what to do.
The power of thought helps us know
what we want to think,
whether it is positive or negative,
or just a debate in our head,
or just a voice we are struggling to hear from another person.
Sometimes we would do anything for love,
even run from hell and back,
and sometimes we actually meet people for a reason to help us at the time
who only help us grow to meet the people who stick with us for life,
while meeting people every day of our life,
speaking the moment of truth,
finding the love we need to live,
while engaging with violent outbursts in our heads
between negative and positive thoughts,
and the powerful outbursts sometimes show in the real world
while most times it just lies inside our heads,
fighting our emotions, fighting our feelings, and fighting what we want to think,
a positive thought can be overthrown easily by a negative thought
if we don’t build a wall in our mind to overthrow the negatives in our mind
because we have to remember thoughts are things
and thoughts create our reality
while thoughts fighting in our minds
become inner battles for what we want in our life,
everyone gives, everyone takes, and everyone battles,
about or but what is.
the door is always open, we just have to open every door,
we just have to be who we are,
with our neurodivergent brains,
with our disabled bodies or not disabled at the time,
and whether we choose to pass for neurotypicality
and how much we choose to be neurotypicality,
finally, it is our choice,
and from that choice,
we choose to make love or to take love,
even when its a rainy night or just clear skies,
all we have to do is make that decision and live with what we choose,
deciding the magic we want to deliver to the world,
with the love we have to give and share,
and see with our eyes the beauty we made
for the world to see and share everywhere.
All we want to do is make the love,
and open the doors wherever we see them.
What about love? What’s missing?
Open the doors!
Jerks, Assholes, Taunters, Real,
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.
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.