My Journey With Autism

I had this blanket as a child that I called Woobie that had lace trim with satin ribbon running through it.  When I rubbed that satin ribbon between my forefinger and thumb, it was as if my whole existence shrunk down to a pinpoint. All the noise and chaos in my body was drowned out by that feeling.

When I was 8 years old I was diagnosed with Non-Verbal Learning Disability. When my mom asked the doctor what that meant, he replied that it was why I was such a freak. Over the course of my life I've been misdiagnosed with a lot of mental health and behavioral conditions but Non-Verbal Learning Disability, while wrong, was actually closer to the truth than most.

I was an extremely unusual child that didn't fit in in any social setting including my own home and school. I couldn't read body language at all so I missed those subtle clues that people were starting to get upset with me, or that posture that would have let me know that that person was annoyed and I shouldn't go up to them in such an upbeat and effusive manner. At that point of my life though, I didn't know that I was missing social skills. I just knew that I was being bullied and had no friends.
It wasn't until much later in life when I realized I had no social skills and I tried to teach myself body language that I started to put the pieces together.

You see, while there are books teaching people how to read body language, apparently that skill is inherent, or at least, it's supposed to be. But when I tried to find books to learn social skills as an adult? Almost impossible. And the more I looked, the more books I found for certain adults, so I finally checked out one of them, specifically "Be Different" by John Elder Robison. When I read that book everything made sense.

When I met with my psychiatrist the following week, I told her I thought I had Asperger's Syndrome. She asked me why I thought so and when I got half way through my reasoning, she stopped me and said, "yes." I asked her if I needed to take a test. She said there was no need and she didn't know why she hadn't seen it before.

I'm IsaJennie and I'm Autistic. I'm on the Autism spectrum. I don't want to be cured. Autism makes me who I am. My brain is different. It functions in a spectacularly complex way that neurotypical people cannot fathom and it is wonderful. What I want to "cure" is the way I am treated by neurotypical people. I want to make the world easier to live in for Autistic people.

Ableism..What The Heck Is It?

Dear Reader,
Addressing issues of inequality is not about being politically correct. In fact, many of those politically correct terms so many people use are actually just the ill-informed attempts of people (who not are quite knowledgable about real issues) to feel like they are doing something useful for "those poor tragic people." I do not use words for the sake of being PC or because my friends use them. I think about my word choice because the words we use have meaning and impact on the people around us. Words matter. My actions matter. If you disagree, that's fine, but I implore you to at least attempt to read this with the mindset that I most likely have a different life experience than you do and my life experience is valid, just like yours is. You do not have to know my pain and life to acknowledge that it exists. 

I've been putting off writing this for months, maybe longer. Why? Because ableism is a constant in my life and it encompasses so much. Trying to define ableism is like trying to capture a dark sky full of stars with a cheap camera...you might capture some of the light but you won't capture that awe-inspiring feeling of being so small yet so big. You won't know what you're looking at. I thought I'd try though. Bear with me and please ask questions in the comment section so I can address any shortcomings, make the post more understandable, etc. I'll mostly be defining ableism using examples as I've always found that helpful and it makes it more tangible! I hope you enjoy and share this post! 
Please note that while I am solely addressing ableism in a vacuum in this post, it absolutely DOES NOT exist in a vacuum. Intersections of oppression exist and make ableism more difficult. The way each person experiences disability is unique and is valid.
CONTENT NOTE: this post could be potentially triggering. Mentions of ableism, non-specific mentions of abuse

~*~

Ableism 

What Does The Dictionary Say?
n. discrimination against people with disabilities. 
n. a set of practices or beliefs that set inferior value to a person with a real or perceived disability (including mental, physical, developmental, etc). Via StopAbleism.Org


What Makes An -Ism?
For something to be a true -ism, it has to go BEYOND the individual! This isn't about one bigot not letting a Blind man with a guide dog into his restaurant, though this is a real problem that happens daily.
Ableism is bigger than individual behavior and is quite literally built into our society. Ableism is about power and privilege versus oppression. In fact, ableism is one of the oldest forms of oppression. Abled/non-Disabled (ND) people did not do anything special to be born Abled/ND, they just were, and yet, society values them more for the way they are. ND people earn exponentially more money (post to come), are able to access public and private spaces easily (their body and design of space allows them to), are viewed as equal (on the axis of Dis/ability), are seen as capable and autonomous, etc. (You can read more about privilege and oppression here: Privilege, Oppression, and Everything In Between.)


The Words You Use
How often do you use these words: d*mb, st*pid, r*tard/ed, -t*rd, m*ntal, cr*zy, ps*cho, n*ts, handicap, cr*pple/d, handicapable, differently-abled?

If you're like most people, I'm guessing you use them every day, if not multiple times a day. I'm not writing this to judge you or to make you feel guilty, I'm writing this so you can be educated on something that has a measurably negative impact on the lives of real people (in your life) with real feelings. I'm writing this so that at the very least, you take a moment to think on your words before you use them.
So. Why is it not just "bad" but oppressive to use these words?

 First of all, many of these words are rooted in historical abuse (cr*ppled, h*ndicap, m*ntal, cr*azy, ps*cho) and we haven't forgotten. Those words are still used negatively against Disabled people.

Secondly, these words are used as value judgments. Examine how you and others treat people after labeling someone cr*zy or st*pid. It suddenly becomes okay to no longer listen to them or treat them with respect. It becomes okay to treat them as lesser than and it is honestly terrifying to me that the act of verbally or otherwise labeling someone with a word associated with disability makes it acceptable to heap all manners of abuse on them.

Thirdly, when it comes to terms that relate to intellect, you are saying that something or someone is less worthy of respect, of dignity, of kindness if it/they is perceived as less intelligent, on the flip side, you are saying that something or someone is more worthy of respect, of dignity, of kindness if it/they is perceived as more intelligent. Even if you're referring to an object, those words transfer to real people. That same logic, that the more intelligent the more worthy of basic human decency and kindness and the less intelligent the less worthy, has been used for literally thousands of years to excuse the most heinous crimes against Disabled people, specifically intellectually Disabled people.

Also, though I didn't include them in the list, using terms like Blind and Deaf for ANYTHING other than someone who is Blind or Deaf is ableist!

Now, I'm sure you're wondering why I included the terms handicapable and differently abled. SOME Disabled people like them but the vast majority do not and the reason is two-fold.
1) they're inaccurate. We are not differently abled, that is to say, we don't have some awe-inspiring other ability that you non-Disabled folks don't have. To quote my amazing friend "It's not like I walk on my hands!"
2) It erases our very real disabilities and the role society plays in their maintenance.

Even if you're not using the above words in a directly negative way, that doesn't change their original meaning and it doesn't change that they still hurt people. .

Finally, you may be thinking to yourself "they're just words...they're just feelings...people are too sensitive." While I think that that is an incredibly upsetting opinion to have, I'll pretend that I agree for a moment. If you don't care about feelings, consider this: those words that you utter so casually because you can't be bothered to use the word you actually mean? Those words are almost always used when Disabled people are being beaten and abused by "loved" ones and even strangers on the street (70% of Disabled people have reported being abused). So those words are not "just words" they are triggers and they are violence, even if you don't mean them to be.

So instead of...

• ...that party was crazy last night!
• try: that party was ridiculous/too much/wild/out of control
• ...that's a stupid argument!
• try: that's an ill-informed/ignorant/illogical/ill-thought-out/incorrect/tragic/poor argument
• ...the weather is bipolar!
• try: the weather is all over the place/mercurial/hot and cold/indecisive/rude
• ..."the political blindness of millennials" or "Deaf to objections"
• try: "the political ignorance of milenials" or "obstinate to objections"

Examine your word choice. It may take some practice, it's easier not to do it at all, but not only are you making a positive impact on those around you, you're also actually saying what you mean! Maybe you can do what I did and institute a jar in your home and every time you or your housemate says one of the above terms, some sum of money goes in the jar. The proceeds in our jar went to a disability charity! 

Let's Get Specific

(* denotes it actually happened to me)

• Ableism is having to prove you're Disabled/sick so you can get "accommodations" while simultaneously having to prove you're not too Disabled/sick so your teachers coerce you into dropping the course*

• Ableism is your teacher saying that people who don't exhibit appropriate body language (squatting down, open body language, etc) in the child study lab will be marked down and when you tell her why you don't do it, being told, in front of your peers, that the teacher is "having trouble (believing) with that"...and still getting marked down*

• Ableism is being so sick that you are in and out of the ER, 2 weeks post major surgery, getting procedures done, but still doing assignments, and being told to do a medical withdrawal for missing lab classes...and then being failed in the course despite trying to do a medical withdrawal*

• Ableism is not providing an ASL translator at events because it's too expensive

• Ableism is not having a audio descriptions available on a show ABOUT A BLIND PROTAGONIST 

• Ableism is constantly being asked "don't you want to be healthy and take the stairs"*

• Ableism is being accused of faking for being able to walk while using a wheelchair*

• Ableism is being accused of being a drug addict for being thing due to illness and for having stomach problems*

• Ableism is asking someone "OMG ARE YOU BLIND!"

• Ableism is joking about a life threatening disease someone has*

• Ableism is valuing some Disabled people over others because they don't need accommodations 

• Ableism is valuing some Disabled people over others because they have normative bodies (in this case, meaning they look ND)

• Ableism is valuing some Disabled people over others because their disability doesn't make you uncomfortable.*

• Ableism is valuing some Disabled people over others because they allow you to use ableist language.*

• Ableism is valuing some Disabled people over others because they fit your idea of what disability is.

• Ableism is telling someone who is very sick "but you don't look sick" thus downplaying their illness*

• Ableism is telling someone who is thin due to extreme illness that you want their illness*

• Ableism  is dismissing someone's concerns because "they should get it"*

• Ableism is assuming someone is/isn't Disabled

• Ableism is using terms like Blind and Deaf as metaphors for situations...implying that they are a choice

• Ableism is using the phrase "stand for ____" instead of "solidarity with _____" 

• Ableism is assuming walking is universal 

• Ableism is being unable to access a classroom and class content

• Ableism is thinking it's okay to say and do ableist things because no one Disabled is around (or so you think).*

• Ableism is someone saying that they are more Disabled (because of their unique oppression) than a Disabled white woman when they aren't Disabled at all.*

• Ableism is denying Disabled people their sexual selves while simultaneously pathologizing them if they are not sexually active.

• Ableism is thinking that anyone who chooses to be in a relationship with a Disabled person is a saint.

• Ableism is sympathizing with abusive parents of Disabled kids because really, how much can one person take?  

• Ableism is having a professor not considering you missing class because you dislocated your shoulder valid but telling a kid who drunkenly cut his hand on a beer bottle that he didn't need to come to class.*

• Ableism is the entire education system.

• Ableism is the belief that physical disability looks a certain way. 
• 
  

Privilege, Oppression, & Everything In Between

Almost everyone has privilege, and almost everyone has oppressions. These are terms often used in the social justice realm and I thought I would take the time to break these terms down from my point of view.

PRIVILEGE
When you tell someone they have privilege, often times their reaction is "But I'm not rich! I've gotten everything I have because I work hard!" In this case, people are thinking of privilege as it relates to wealth. In reality, when people, especially people involved in social justice work or marginalized communities, refer to privilege, they're referring to a social advantage that is only available to certain groups. Admitting you have privilege isn't denying any hard work you've had to do to get to where you are, it is simply admitting that, through no fault of your own, society values some aspect of you that you have no control over and this has given you certain advantages.

Under the heading of Examining Your Privilege & Oppression you can find some tips for coming to terms with privilege.

OPPRESSION

Oppression is the counterpoint to privilege. In a phrase, it is unjust treatment, particularly of a group of people.

There is a tendency in the United States and other "developed" countries, to downplay the extent to which oppression exists. I believe this has to do with the values Americans in particular claim. It is very difficult to reconcile the degree of oppression we have in this country with our values of freedom, equality, and justice for all. Despite this contradiction though, oppression does exist and it has been studied extensively. I can direct you to scientific experiments, Department of Justice reports, books, survey responses, people's personal stories...all of these sources prove that oppression is alive and well. Oppression is also not a competition. I frequently hear people say that women in the United States aren't oppressed because women in Pakistan have it worse. There is no prize for being the Most Oppressed and it does no good to compare incomparable struggles. Oppression exists everywhere and it needs to be addressed. It is best to focus on the oppression we can most directly influence and then signal boost the struggles of those with oppressions we don't experience.

It is important to note that the oppressions and -isms discussed are SYSTEMIC and SYSTEMATIC meaning they are built into our institutions and our society. When I discuss racism, I do not use the dictionary definition but rather the social justice definition of racism. When we use the dictionary definition of racism, we are erasing the long and ugly history it has and decentering those that experience it most. White people love to claim that we experience racism because we are called crackers. Racism is deeper than this. The deliberate genocide and enslavement of Brown and Black bodies by our society is racism. The levels of police brutality experienced by Black and Brown bodies is racism. Being called a honky is not. However, PLEASE don't take my word for it! I am white and it's really not my place to discuss racism so please check out racismschool.tumblr.com and this amazing TedTalk The Power of Privilege

AXES

Privilege and oppression come in many different forms that exist on an intersecting continuum. At one end, there is privilege, and on the other end, oppression. Axes of privilege/oppression include, but are not limited to: race/ethnicity, dis/ability, religion, sex, gender, age, class, and size. I have created a matrix that should help clarify how they all coexist and intersect. There are some fuzzy areas and plenty of overlap...consider the matrix a rough visual! 

 *Please note that in dominant US society, sex is viewed as a binary so I only included man and woman as options for sex although that does not reflect my own views.*

EXAMINING YOUR PRIVILEGE AND OPPRESSION
Often, those that have privilege are completely unaware that they have it and of the advantages that have been afforded to them. Finding out you have privilege often comes as a shock and it can cause many people to react negatively: to lash out, to shut down, and to deny what the person is saying without taking the time to listen and process. STOP! Take a breath! Clear your mind. Now put yourself in the other person's shoes and forget everything you thought you knew. Now listen and learn!

CHECK YOURSELF CONSTANTLY! Here's a great source to examine how much privilege you have: The Social Privilege Test

Your privilege can help ease some of your oppression and your oppression can whittle away some of your privilege. Where you fall may change and may depend on the groups you're in. 

FULL DISCLOSURE
I urge you all to examine your privilege and oppression and in the spirit of open sharing and exploration, allow me to tell you where I fit:

Privileges: White, Educated, Cisgender (not trans), Upper Class, Gender-conforming

Oppressions: Young Woman, Pansexual, Disabled, Autistic, Chronically ill, Atheist

--------------------------------------

Any questions? Comments? Suggestions?

I plan to discuss ableism next so stay tuned for that! 

That/s All For Now Folks, 

-IsaJennie