Medical charity and self-advocacy organizations have always been at odds with interpreting disability with each other. Medical charity has always interpreted disability with the ideas of guardianship and fixing or conforming. Self-Advocacy organizations take a different approach. They teach the ideas of supported decision making based on self-determination, self-direction, and interdependence. I have been through conflicts between medical charity and self-advocacy as some of you may have also through the differences in philosophy. It’s really ‘Nothing about us, without us’ which is what I believe.
When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, when I choose a different way of living from others, it does not mean it’s not a quality life. If I choose to move out, then that’s my choice. A quality life is subjective to what an individual actually feels they want in their life or need at the time. No one can suggest a better quality of life or social skills to make others conform. People who interact with me need to remember who I am as an individual and how individuality really is what everyone wants.
This leads to too much frustration because of a social construction of conformity the mainstream media has used every day. Some people may be more frustrated with who they are than other people because their experiences with how society treated them or how individuals treated them in the past made them feel particularly unjustified and unaccepted living their life. I have been an example of this. This responsibility is not only what I need to be accountable for, but also what many who interact with me need to do as well. Conformity is also nonconformity that some may not fully take into account.
Many people have their own way of living while having their pride that makes them feel good about who they are. I can do what is right for me, and anyone who interacts with me has to know we can’t enforce our influences. Universal design is important in this way! Why can’t we create universal design in everything we do in society so that everyone feels that they can live their life the way they know best? Our society has always conformed to the idea that its citizens are vulnerable and need to be corrected to fit in, not in their natural way of living.
The world is a tough place to live in. Autistic people including myself can be vulnerable, we are all different from each other, and simultaneously we can all be vulnerable to what others are thinking including non autistic people. However, it does not mean as individuals that vulnerability is a weakness. Human culture is defined; all of us think whoever is standing out in the moment yelling the loudest, is the leader. This is not true, we are all leaders of our own life. It’s called self-direction.
In order to think through how to create a less vulnerable society, we can help by providing to strive for universally designing a world that everyone can live in with dignity, respect, getting their voices heard, and being able to function with everyone around them no matter what. Any one can lead their life however they want. We need to do better and we need to ease the pains of so many people, including Autistic and non-autistic alike.
Our society created the mindset of the perfect mind and body back when Francis Galton created the word eugenics and the world decided that between Darwin’s evolutionary theory his creation of the word eugenics, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust who he thought society could do away with. I am sorry to say, but the world, created the way Hitler would eventually think about how the human genome, race, and religion. We couldn’t control how some people would interpret this thinking even today. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.
Everyone seems to not understand that trying to perfect a human genome is trying to perfect something that is constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We are human beings so I understand why many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for. As we are Human beings who live in this world, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless since we all go through the same trials, tribulations, and rewards in life.
Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people make while others we feel could not make decisions at all and could not think on their own. We need to give everyone the tools to decide and think about what they want on their own. This thinking convinced many people that their decisions are illogical and not right. Making decisions for one’s life depends on the kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need support from people who can help. In the end, the final decision is ours.
Whenever I make a decision, it not only affects myself, but it also affects everyone around me in society and that’s when difficult conversations persist. These decisions affect us individually in many different ways. If a child rebels against their parents decision to change who they are, then the child and parents must take responsibility for their actions. Deciding on changing the way a person is, also changes the way everyone else feels about themselves. It is important to attribute every decision I make to the way I think about others and life. When I think about who we are as a people, I think about where we came from, and the people in our life that affect what we think. What we think sometimes can hurt who we are and/or other people.
In 2006 I was searching for a new way of thinking about disability. At the time, I didn’t know much about disability studies, rights, and justice. I grew up knowing disability had to be fixed or cured, and there had to be a subset of normal and abnormal, and disability meant dependency. Then I found the Autism Hub and someone on it named Mel Baggs, a person who was autistic with many other facets of disability.
From there on, the whole rhetoric I knew about growing up suddenly became dimmer and dimmer as I learned more and more deeper and deeper into disability studies. I eventually earned my Master’s degree in disability studies. And all this came, in large part, to Mel’s contributions on Autism Hub. At first, I didn’t get Mel’s contributions. I liked Mel’s work, but I didn’t get it. Sometimes the light bulb takes a while to go on and sometimes it takes deaths for that to happen. In this case, it took Mel’s life in order to fully get it. Let’s take a look into how it did by glimpsing into the work of Mx. Mel Baggs. Here’s what I have taken away from hir work: When we are born, we are born with a brain, a mouth, a nose, ears, eyes, the ability to touch, and use our sensory system however we can use it. This system includes the brain and after watching Mel’s video on YouTube in 2007, my eyes opened up to remind me of this because I have always had a mouth I can use, eyes to see, ears to hear, a brain to process, and my body to feel. Not everyone has all of these facets at once. In essence, I am a human being and I can breathe. My realization of Mel’s contributions to my own life was when I watched her YouTube videos showing who she is and what she can and cannot do.
My life has always been rooted in fear, fear of the unknown, fear of speaking up, and fear in what will be if I get too comfortable or too risky. Take for instance, my own bar mitzvah, I had a hard time speaking up to enjoy a party my parents’ made for me with a theme I wanted – “horror movies”. It seemed liked I took it all for granted, and by golly, it seemed like that on the outside, but I never really got over that fear back then, and it slowly passes my life. The fear that disrupts my life to this very day from every job I ever had to a simple friendship and communication to even communication with my own family. It makes me quiver knowing I have never really communicated so well as Mel had or many others throughout my life. It reminds me that during these times of quarantining and living with my parents, my family and I had a Zoom family gatherings and I still struggle with that fear. I have never been not fearful and but the fear subsided, a little, and I was able to put the fear behind me the more and more I read Mel’s work. Mel’s work left me in awe. To see such communications from an Autistic person who lived their life with a lot more disability than me, an Autistic person whose has an impairment rooted in fear of speaking up. And it’s not that I was not taught to speak up, but I was taught without understanding my fears. Mel’s work showed another way. I still have struggles with my fears, but understanding my fears brought me to a time in a couple of years before starting graduate school empowered me to speak up when I took my own initiative to transition my career. I spoke up to my boss basically yelling at the doctor’s office I was working at, to say how I really felt. A year later, I applied for graduate school. This was my first step of many more steps to come in my journey of speaking up. Many of the people closest to me still don’t see me as a person even as I speak up. This can be frustrating, but I am resilient and always have been. My tenacity keeps me going and Mel’s contributions continue to help me as they are archived on the internet. I know I’m not the only one influenced by hir work, which seems to be a catalyst and reminder that one can speak up, that we each have the power, and no one should be afraid. Mel would sometimes only type, “I have the Power”, bringing to mind He-Man and the Masters of the Universe as well which was a favorite of mine.
Mel also wrote powerfully about self-advocacy, particularly in hir piece, the Meaning of Self-Advocacy, found on autistics.org. As Mel taught us, “Self-Advocacy does not always look good on paper”. I learned that self-advocacy is not just about speaking up, it is following through as a person. Mel seemed to really understood how to make community, a community unified with everyone and be with the relationships who care. I learned through Mel’s writings and videos that the people involved in advocacy must act and be a team of communication. Sometimes you must be blunt, sometimes you must be told your acting out, and sometimes you must tell your feelings so the other person knows how you feel.
But there’s something that Mel “got” that meant so much to me. Sie pointed out in a 2016 blog post, “you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not”. Hir writing cut to the chase and simply put out there the truth that needed to be told.
Mel Baggs showed a passion for agency and communication across everyone’s relationships. Without any type of communication, we really have no relationship and communication is not just talking. Another blog post Mel wrote that really delved further into this concept and sharpened my advocacy was in hir article “Aspie Supremacy Can Kill” when they wrote “On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power” (Baggs March 2010. Humanity is one thing that really means being with one each other with the flexibility to love and respect. Finally, I always learned about Mel from hir work was no one can take the power away from us unless we give it to them, and if we don’t give it to them, then we have our own power. However, power does not mean disrespecting our family, friends, and people we vote into power in governments and other authority positions, it just means ownership in the responsibility of our self. Thank you, Mel, for a wonderful life of teaching your peers and beyond about speaking up and I appreciate every part of your work you accomplished to show all of us we should not get too comfortable and afraid. There really is a way to speak up to live our own life with what we want. I end it with this from Mel Baggs blog post from 2016, “You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway” (Baggs May 2016).
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.