An Analogy of My Experience in the Autism Community for Political Movements. Rhetoric - is it Justice? Is it Inclusion? "Social Justice" and the Context of Intent.

"There does come a point (when a seeker) has so much information- we have read so many books and heard so many opinions- that we have to turn away from more knowledge and sift through what we have gathered. Away from the opinions and judgements of others, in a place where we feel safe and at ease, we need to examine each idea, belief and practice and measure it against our own soul. Those that resonate and feel right we keep and synthesize into our belief system. Those that do not we respectfully put away from us. Not everything is for everybody. We all have our own unique path. It is up to us to find it." Barbara Moore

I have been nurturing my path. This is a bit of context to why I do not hop on many trends, social justice movements, or get involved with current rhetoric. That is not to say that some of these things will not be noble and true for others. We each must weigh our knowledge against our experiences, contexts and souls.   

Years ago when I got diagnosed with Autism ( Aspergers Syndrome at the time)  I was immersed quickly into a new community. At first it was inclusive and I found forever friends and a place I belonged. The years went by and one day, I found my blog being unfollowed by many Autistics. It was only recently that I found out that the main reason was because I still often used the terms I was diagnosed with.  "Aspergers Syndrome" and "Aspie." I tried to use Autistic more often but "Aspie" had become a term of endearment to myself and my son who had grown up with it as a nickname since he was a toddler. As a teen he still loved it. 

My friend Sam addresses this travesty in THIS (CLICK) post;
"I have been rejected as a speaker at some autistic-run conferences, even as I had stronger credentials and proposals than the other speakers, based again on the name of my book. (I don’t mind anymore, there are many other conferences. Just a sad fact.) Several autistic advocates have been forced or bullied to change the name of their website, company, or community social media page because it contained the word Asperger(s) or Aspie or some other word that implied , even made up words! Some well-meaning autistic individuals (or Aspies) have turned away from helping others because of the continual debating, shaming, and anger over the name they call themselves. Others have left a community that they were led to believe was built on support and inclusion."

In the last five years, I have been corrected, as an autistic, for not using the right terms for MYSELF like a capital or following with “person“ after autistic. I was challenged BY other Autistics for not talking about neurodiversity or ableism properly. I was told I was ableist a few times, Me- who struggles being capable on a daily level in many ways due to executive functioning and sensory issues! Not only was this hurtful but it didn't feel like the inclusive place I originally joined. Other times it was by well meaning "advocates" or parents of Autistics who were not autistic themselves but knew all the autistic jargon and were “advocating” *for* me and *AT* me. They made me feel confused.

There was even division of the “ scale of autism” where mostly non autistics, parents and “educators” judged the verbal and non verbal and put them in the categories of “high functioning” and “low functioning." Luckily, there were articles written on that proving that low functioning in one circumstance like a non verbal confined to a wheel chair was high functioning in another (when they used their device to write epic stories.) Or on a simpler level - when a person can be both high functioning and low functioning on the same day and it renders it moot. CLICK HERE for a quick article on the topic (the best I've read. A MUST for anyone advocating for Autism.) I don’t think it’s the actual experience to be so literally black or white about it in both autism or skin colour or any other difference. Because on the scale, in their own context, each person has different treatment. Many experience trauma in different ways. Some also experience love on different levels. 

I was “educated” by some (and self educated quickly there after) on the jargon. I tried to use the "correct terms" often for a few years. I fought hard. I called myself an advocate. I was immersed in the jargon and even expected friends and family to use it with the misplaced idea that the correct dialogue was what made them truly love, understand and respect me. But then I realized that the INTENT of words is completely separate from the "appropriate" words. Many words that are used for social justice as "noble" or in place of "dubious history" are also monetized. 

As Sam writes HERE (CLICK for the amazing full article): "For the record, DSM-V, the ‘Physicians Bible’ that created the ‘newer’ autism spectrum diagnosis, is largely backed by special interest groups with financial gain at heart, particularly pharmaceutical and health insurance companies, who are known for their greed and ill treatment of citizens and have victimize millions. The diagnosis criteria of Aspergers transitioning to the umbrella spectrum disorder was not changed for pure-at-heart reasons. It was changed primarily to assist in filling the deep-pocketed big businesses. Many word origins are rooted in tainted soil. In addition, Dr. Asperger is partially credited for laying the foundation for ‘autism’ conditions." (In the article she also addresses Dr. Aspergers "Nazi connections." I have found this particular accusation being thrown around in other places casually for anyone who is in disagreement with radical leftists. When you dig deeper in research done with neutrality or find the truth between both sides, often (sometimes it is valid) what is found is speculation at best and word twisting for an agenda at worst.)

A couple years into my Autism / Aspergers journey, I learned that the widely funded and accepted group “ autism speaks” was actually quite damaging to most autistics in the name of helping and tolerance. Many autistics who could verbalize in writing wrote against it. Often parents of autistics supported it. There were numerous reasons I felt uncomfortable with the motives and portrayals of autistic people from the organization that was supposed to be speaking FOR us. Phrases like “Autistics matter” just brought home the narrative to me that, “Wait did we not matter before?” I knew my wiring had caused some issues around reciprocity and love. But constantly telling me phrases like that made me feel LESS like I belonged. People jumped on the bandwagon because they thought it was helping or that they were nobly on the “right side of history.” Articles citing vaccinations as causing autism and fear mongering were passed on. Which made myself and my children feel like a disease to be eradicated. Articles celebrating ABA therapy (which some autistics stand behind but many found abusive) were tried by loving parents because it sounded like the right thing to do. 

At that stage I definitely did not want to be autistic. Why would I want to be or celebrate my differences, when the very people who were supposed to be "speaking up for me"  were telling me how different I was and re enforcing my wounds and the history of autism at me all the time even if it wasn’t ALL my exact experience?  Had I not been loved solely because of autism? That dialogue got in my head and made me feel even more of a minority. I admit to a darker stage, when for awhile I felt like a bit of a martyr. Some of these are a legitimate phases of learning to live with being a minority. I knew that I had some instances of judgement or cruelty based on my differences (all prejudices and cruelty are clearly wrong) but I never thought of these mindsets as a generalization world wide. That would have been a dangerous thought pattern to have.

Did I have misunderstandings based on my brain wiring? All the time. Was I not loved due to autism? Honestly, yes, sometimes. Did I encounter some blatant discrimination? Yes. A few times, especially in medical situations. One particular person set me into months long depression at the accusations she geared towards me. My husband was appalled at the treatment. I cried for three hours straight after. That was just one degrading time of many.

On the other side of the coin, over the years I found a few select medical practitioners who treated me differently in a good way. They took into account my differences under stress, anxiety and sensory and chose to work with me. It was imperative that they did not treat me as equal but unique. Yet, they also needed to give me equal respect as a human being.

I can see where people can easily generalize whole institutions based on experiences or a few bad experiences of their friends. I honestly have a problem with the nursing profession more than I should. In some cases it was justified. There are practices that need to change. For my part, I had to own my generalizations and engage in cognitive behavioural therapy to recognize that all nurses are not bad or discriminatory. I had to learn (and still get setbacks) that the system is not all flawed. I still have a problem with a lot of it and high anxiety with new nurses. I still would like to see some changes. Most of my experiences have been negative, however the positive is becoming more prominent the more I find allies context to context. I’m learning there will always be good with the bad...it can’t all be generalized and judged. 

Maybe “Autism speaks“ started out with good intentions too but society took it and over time it became widely damaging in the name of tolerance? I actually can't answer that question as I stopped engaging in conversations about it. I do know a few autistics who thought it did some good. They are in the minority but whom am I to judge their positive experience?

I was highly against “autism speaks" and spoke out against it with many other autistics over the years. I became confused when I learned that there were a few autistics who were verbal and writing online who were FOR autism speaks and some like John Elder even spoke for them. On forums (before Instagram) I was shocked to find that there were actually autistics being against autistics in the name of advocacy fighting over the true or noble way to advocate for change. I had one autistic girl target and bully me for having a family and more than one child. I had to block her from my email. 

Frankly? I got tired. Not only did I have a family to raise but I was also dealing with chronically low blood levels (ferritin and hemoglobin), autoimmune disease and my own limitations. I just wanted to be me. 

I heard idealizations of representation on the media and in shows. But when I actually thought about it personally, I didn’t want a world where autistics were represented in every movie or the leading role more often, or talked as much about neurotypicals. That wasn't a reality. We are a minority and that would be weird. I realized I didn’t want full equality for equality sake. I wanted full humanity. Would more representation help? I found at times, it hindered when done improperly. I realized equal rights was not often equal. Some aspects reminded me of extreme communism activated (which is a utopian ideal but anyone who has studied history knows that Stalin caused more deaths than Hitler and communism perpetuates it's own violence. Read Gulag Archipelago for more. Especially if you are a fan of Marxist philosophy.) 

The very people who need more rights in the first place end up having their rights ignored because they are different. Because they do require a few different approaches due to their own contexts, histories, tolerances, languages, styles, different economic stats, disease or addiction, DNA or co conditions, lifestyle traits etc. Unfortunately, we can not all be equal in everything. We have glorious differences to be celebrated and wonderful similarities to focus on. We can help each other where we are at odds. I realized I actually never wanted equality in treatment but equality as a human being whom is both unique and common. 

Ultimately I wanted and want to be treated as a saying in the autism community goes;
“Different NOT less.” 
Never less. But I definitely want to acknowledge the beauty and hardship of differences. 

An example: If I was treated the same in a sensory environment I would fail. If I was held up to a normally wired (neurotypical) person I would fail. In my journey, I had to learn to accept the terrible abuse and mental hospital mistakes in the past, as part of the cultural PAST. It did not mean I supported or thought that treatment was ok. It did not mean that sometimes those travesties are not still committed. But by not erasing history and the previous times, there were reminders and lessons. 

A lot of my journey through autism advocacy and my experiences with the health care institution is eerily akin to what is happening now and with the police narrative. This was a huge dose of needed perspective. 

For me, it came down to owning what I can change personally. I teach my children to never use autism/ aspergers/ disability/ illness/ difference as excuses but as an explanations. There is a key difference there. It is empowering. And hopefully a bridge or mode to understanding. 

My biggest lesson was self acceptance. I WAS/AM autistic. Yes, it often means I am the minority for processing and communication in a group of people. Sometimes this is obvious and at other times invisible. Sometimes invisibility made it worse and I almost wished I “showed“ more or could “mask” less. Other times invisibility made it better, but then I’d be angry that was the case on behalf of others who couldn’t be that way, or the parts of myself that became sick from masking. Both were terrible in different ways. On the flip side, sometimes it was a boon to be different. It gave me advantages. I’d be silly to think it wasn’t an asset too at times to be how I was. 

So all this lead up to this moment in time. This is my context and story. This is why I decided that I didn’t want to be called an advocate for autism or anything else. Often advocacy starts out with love and nobility but easily gets lost in it's own rhetoric and languages and creates new problems or forgets WHY it is doing what it is. Sometimes in the name of loving people it forgets the actual case by case person TO love. It’s easy to get lost in proper terms that seem to be noble or about love and forget the very flawed people who have stood by us and love us. I’m not saying the abusive, discriminatory language should go unsanctioned. I'm also not saying that I will not "advocate" on behalf of those I love or myself. To me it is reminiscent of when I stopped using the term "Christian." It was tied up in too many opposing belief systems, insinuations, movements, and judgements. I couldn't use it anymore even if some of my friends felt it was the right term for them. I could respect that. I ask them to respect my decision.

I know movements can also be crucial and there is a time and place for everything. I definitely played all parts in my own autism journey and maybe I will again in the future depending on circumstance and context. Maybe each one was legitimate? Some of it can easily be boiled down to ages and stages. But in my context now? I’m more wary.

I prefer now to work my social change person to person, telling stories, sharing others stories. Sometimes I send things in a moment of passion or thinking and mistakenly think people are in the same context as me even though, through these experiences, I’ve learned they are often not. There’s a part of me that forgets. I’m also human and make mistakes. I can rarely articulate what I want except  in writing or music. I still use music the most to communicate whom I am or what I want or my feelings to my children and husband because my writing is still misinterpreted. Often I don’t have words or say the wrong thing or assume someone will understand. I prefer to listen to both sides. I do take a stance but that stance is often not what I portray or what people know. It takes deep thoughtful meditation to get there and I can’t explain it ( also how I feel about beliefs.) 

I worry that the words we use actually make the issues worse. When “white Privilege “ is constantly talked about or “ white supremacist's " it becomes even MORE of a problem. It does not mean there is not racism or that all people have some form of privilege. There is a difference between actual racism and the belief of "systemic racism". I have been educated on both. I find that there is much that needs more discussion and research that is not from a biased political scheme. Telling people who don’t use the proper terms that they are ablest, racist, anti whatever or asking to “educate” them is also a form of bullying. How dare we tell other people what to call themselves? How dare we ask people to constantly remember all the proper terms? It goes both ways. In the end, many of the terms are a socially constructed form of cultural appropriateness. Do we need to change some words? Yes. Often the reason why we change words are not as noble as we think. Intent of the word is more important than the word itself. Context is everything. Sure, if in a loving relationship, there is a time and place to ask for certain terms or to ask for certain words to be left out of the equation. Love conquers all.

I personally believe diffusing, focusing on statements such as: “Here is what love looks like" "This is a story of love" "This is an example of  WHY you matter" or "Look at this person who thrives and are just like YOU!” Empowering speech and people instead of using speech that victimizes and martyrs. I hated being victimized in the autism rhetoric yet some organizations still thrive and are being applauded by many today who do just that. Part of me has to be ok with the good parts they do and not see it as completely polarized. Many other advocacy groups for LGBTQ to race to ableism are getting lost in their own language insistence and policing. It’s sad because what they are trying to achieve in most cases is noble and true. Judgements, bullying, racism, hate, policing loved ones and the silencing culture is not ok. It’s never ok. Even in the name of “justice” or “educating.” 

I’ve been burned too recently by advocacy in the name of tolerance to join up with any. I see too many patterns that I’ve lived through. I do believe in kindness, inclusion, love, true justice based case to case, merit (which has also become a dirty word), grace, patience... 

I do have a huge heart for minorities. For making the world better. For peace and equality of humanity. But not equality overall. From my perspective and experiences, that ends up being unjust and unequal. Recognizing differences, celebrating them when possible, working on owning our life stories and improving where we can and helping those who cannot help themselves is a credo I can support. I believe in living our best lives, not out of guilt or shame for differences, but out of celebration.

Sometimes the loudest voices actually aren’t often the kindest. They are the meanest or hurt people who are hiding behind rhetoric to push what may seem noble but cruelty can mask as kindness. Kindness takes the conversations, the time, the respect, the heart, and an aspect of home. Home is a place where there are boundaries like a door to be closed or opened. A home is place where safety should be offered to all who enter with true intent. Anyone, no matter their differences, can be treated with respect. They may challenge or disagree inside the home but a true home offers an ability to have fair treatment. Which doesn’t mean each child will get the exact same room but a room that expresses both their differences as people (and celebrates them!) and gives the similarities of being human also expressed in their rooms. Home provides shelter to grow. It provides a place to earn merit and learn how to be decent. But it’s also a place to activate grace when the fallibility of being human kicks in.

Kindness begins in the home. It ripples outward. Those whom are placed directly in our paths should have an aspect of it given to them from us and vice versa. If we put an ideal and rhetoric before people we put issues before relationships. It doesn’t mean the issues don’t matter but it does mean that we begin to see heart and hearth. Home is a place where differences matter because they do. We are not all the same. My son with freckles and moles needs extra attention in the heat/sunshine. My daughter with hyper flexibility has to attend physiotherapy. I can’t cook or drive in most places. It would be a travesty and injustice to treat our very human differences as either wrong or put them all on the same level. We will have different needs at different times. Contextual stories help erase hate. And when there are times when we are threatened by more - in an ideological home- we can lock the doors and invite in those who will respect humanity at all levels even if the conversation may hold nuances of difference.

This is my personal context. It’s my story and my opinions. This is my freedom of speech from living in a country that still allows for the expression of all. That matters. That is being threatened in seemingly noble ways but we need to look at all we will lose- especially for those we are fighting FOR.

I’m going to be fallible. I’m going to be right at times too. The new silencing culture that bans books, tears down statues, cancels talk shows based on a long ago transgression, holds mistakes from the past as the current present, polices languages etc.all in the name of making things "better" is forgetting the crucial lessons we learn about the good and the bad of history. There are ways to honour the good while taking lessons from the bad. An example would be to either move the statue to a museum acknowledging the part it played in history with a write up of the benefits and the terrible. Or to erect a new statue next to it celebrating the very aspect that was unsupported in the past. Re writing history the way we wish it could be, is a travesty. Re writing our future starts now.

I’m going to be both confident in my stances and suffer low self esteem sometimes. I am going to both live with misery and joy. And that makes me human. That makes me alive. I refuse to be policed by friends and family. That is my personal right as it should be for all. Challenges in context and with kindness are entirely different matters. I don't love conflict, but I’ll dive into tough conversations. I will apologize for hurt caused if I see it or if it is asked of me. I will also try my best to live in integrity and kindness. I always felt like an alien and still often do, but I know I’m also human ... And that’s where we are the same and what I try to focus on while still telling my story and celebrating and respecting our differences. 

I actually felt Sam expressed this better than I could accurately;

Post Edit: My husband suggested I make it clear that I believe in equal rights of humanity which is different from treating everyone the same. He said people may think I am against equality but see, those are two very different concepts. Emotions and hype can cause the lack of distinction. I thought it was clear so I urge you to re read my words if it is not.

Song Choice: Mind is A Prison- Alec Benjamin  "...Then I tied up my linen with five strips of ribbon I found. Scaled the side of the building. I ran to the hills till they found me. And they put me back in my cell. All by myself, alone with my thoughts again. I guess my mind is a prison and I'm never gonna get out
So they tranquilized me, analyzed me, threw me back in my cage.Then they tied me to an IV, told me I was insane. I'm a prisoner, a visitor inside of my brain. And no matter what I do, they try to keep me in chains Sometimes I think too much, yeah, I get so caught up I'm always stuck in my head I wish I could escape, I tried to yesterday Took all the sheets off my bed...Said even if it's true, no matter what I do. I'm never gonna escape I won't give up on hope, secure another rope And try for another day..."