Tuesday, September 30, 2014

"Doesn't Everyone have a Little Autism In them?" Wounding "Well Meaning" Statements (Ableism and The Neurodiverse Movement explained.)

The problem with well meaning statements is that they come from a place of genuine care and attempts at understanding, so it is tougher to address them. Often, in person, I don't have the words to respond because people are often trying to show we are similar and can relate. It is often meant to be sweet, however, often, these statements are also condescending. Without realizing it, statements like the following trivialize specific journeys in life. I find it easier to respond in writing so the following are other ways to look at how some of these well meaning statements comes across:

1. "Doesn't Everyone Have a Little Autism In Them?"

Perhaps that is true in the sense that everyone has traits that could be translated as such, but in every other way its not true. It minimizes both the struggle and beauty of Neurodiverse traits. It's not true that everyone is a little Autistic. You either have the different brain wiring (Often on a MRI different areas light up when you experience sensory overload, however, Autism can not be proven by an MRI but the brain IS different) or you don’t. Even if there is “high” or “low” functioning it is still a similar brain wiring…which translates into purely Autistic. No matter what. In some situations a presumably high functioning Autistic could be very low and in some situations a presumably low functioning Autistic could be high in their certain fields…so it renders it simply autistic. (See THIS post by Musings of An Aspie for more.) In other mental differences, to be OCD truly, one must have both ritual and anxiety and compulsion and obsession…unless it’s OCD anxiety which is different and yes, a lot of people can have OCD anxiety without actual OCD. As for Bipolar, we do all have opposing sides and paradoxes of being deeply down or up at some stages in our life, but we can’t be a little Bipolar…you either are or are not. Again, the brain wiring is different. You can be a paradox or have similar attributes at a time but it is very different from BEING Bipolar. Are you seeing where I am going with this?
Anyone who has these ways of being may have a tough time hearing statements like the above because it hurts. It is well meaning but it minimizes the struggle and beauty of differences. It’s kind of like saying” Everyone has a little Hispanic/ African/ German in them.” or "Everyone is a little blind in their sight." Um no…Some people have 20/20 vision. We don’t give these statements with physical differences yet we do it with mental differences? These Neurodiverse traits take a lot of work to discover, find validation in, and adjust to. It is invalidating to the journey and hard work of these people to say that "everyone" also is like this. It would be rude to say this to someone who is blind or of a different race or someone who is sharing their life path of struggles and beauty, to minimize it by saying "all" of us are like that. It disregards the specific wiring, or essence of that person.

2.) "Maybe if Autistics stopped talking about their Autism/ Stopped writing articles/ Or sending me articles on how to treat them, I would just treat them normally the way they would like."

Let's get this myth out of the way first...we actually do not wanted to be treated "normally". There is a difference between being treated with understanding and dignity and being treated like every other normally wired person. We are NOT wired normally so there are exceptions to our treatment. This is true in the medical world so it is going to also be true in the social world. We DO want to be treated with the SAME respect regarding our gifts and weaknesses that normal people do but this does not translate into being treated "normally." In my experience "normally" means  being forced into experiencing some sensory torture or having others be inconsiderate about the fact that eye contact feels painful (see THIS post.) We don't need more ignorance.

Ableism and Neurodiversity (Click here for a brief explanation and roots of the Neurodiverse movement)  are relatively new words and the fight for existence and fight against Ableism is a relatively new movement. (Click HERE for a brief guide into the rhetoric of Ableism.) Like the Civil Rights Movement we need people to speak up for their own differences and need for respect. Martin Luther King was often despised for speaking out but he was crucial to the movement, along with many others who spread his name, referenced his speeches and pointed to the many injustices based on race. In the Feminist movement, words like "Patriarchy" were unheard of prior to the sixties and seventies. Now it is common knowledge and accepted into our society. Ableism is now on the forefront and it takes the people who belong to the Neurodiverse groups to spread the word. If it doesn't come from us, it is often skewed. Professionals are often well meaning but do not understand all the nuances in our brain. Since we live in our brain, we can probably explain more accurately than someone who only studies us. When we have the time to get out the words this can be effective. Usually written word is better for us, thus all the articles and references. It is easier for us to send out trusted sources or our own words and hope something sinks in than to explain it in person, which an NT would probably prefer. In person is always tougher because of distractions, grasping for words and sensory overload.

It has been found that the opposite of love is not hate but Apathy. Autistics are often met with apathy. In fact, anyone who is Nuerodiverse is often met with Apathy because our struggles in this particular culture are not seen, nor unfortunately, is most of our beauty. Ableism is often from apathy. Most people do not even know what Ableism is. I didn't until very recently. That is sad. To quote Lydia from Autistic Hoya "Our fight is less against willful hate and more against the easy ignorance cloaked in the privilege of never having to live a disabled experience -- the privilege of never being guilted and shamed into going to an event that you lost the spoons for but had requested an interpreter for beforehand -- the privilege of never having to decide days in advance whether you will go to an event or not -- the privilege of never having to wonder whether you'll be able to access the handouts, presentation slides, or speech of the presenter -- the privilege of not worrying whether other attendees' perfumed products will induce an allergic reaction, meltdown, or physical illness -- the privilege of not sitting on edge in case something triggers a seizure -- the privilege of not thinking about whether something will surprise you by triggering a panic, anxiety, or PTSD attack -- the privilege of not having to think about whether you can even get into the ... building -- the privilege of being able to go to any event you like, anywhere, with little difficulty or inconvenience except perhaps finding parking --."

3.) Phrases that are often said to Autistics that are rude but often born out of ignorance and not malice.

Ignorance is a travesty easily remedied. If you are reading this and the links then you are no longer ignorant of some of these issues, thus (hopefully) making you a more understanding, compassionate person and starting you on the path to larger minority group issues. Lydia covers this better than I could and while I may have a few different approaches to a few of her points, this post covers most of it aptly: http://www.autistichoya.com/2012/02/15-things-you-should-never-say-to.html

My point in giving these well meaning statements a second thought is not to create shame in those who have said these things. In fact, I have been guilty of a few of these phrases once upon a time. But with education and a little enlightenment we can stop saying things that wound and instead start speaking each other's language. I really believe most of these things need to come to light so we can begin to translate different experiences of this world. This is the time of the Ableist movement. All Autistics and other Nuerodiverse people are finally being able to share their OWN experiences in their OWN words. There is immense freedom in that. We are finally bringing to light all the experiences that have (with good intentions) caused immense damage.

Many people, prior to the Civil Rights movement, thought that slavery was the accepted norm. Many people were enslaved because of "good intentions" and not thinking outside the cultural box of conformity. Now most of us would never even think that way anymore, but it took many people speaking up, many people looking foolish, and many of those who were discriminated against to speak up in the midst of disdain, pain and prejudice to create change that is still happening.  

The conversation needs to change. Luckily, steps are being taken to change it- for example The Social Model of Disability (CLICK HERE for more.) We need to build each other up and start speaking each other's language. Adult Autistics often know how to speak NT (normal people) because we have to mask, conform and be considered somewhat normal just to survive. Yet, many Normal people conclude that we are asking them to understand us but we are not putting in the effort. Nothing could be further from the truth. It is time create a better conversation without inflicting as many wounds.
*Post Edit: Josie wrote, on another blog, a statement which I feels helps this post immensely: "When someone is both an advocate and a self-advocate as well as an activist for something personally affecting, the line becomes blurred. You are advocating and working for things to be different for other people but also for yourself. It might be easier for other people [see those without a disability] if individuals did not engage in self-advocacy or did not engage in activist, awareness, or inclusion education activities which revealed that they, themselves, are a part of the population often excluded...One of the more effective ways to get across awareness and education is to make others understand that these are individuals, not one dimensional poster people. But that can be troublesome. I mean that can bother another person, knowing how much their willful ignorance, their indifference, their exclusion absolutely hurts and negatively affects individual lives. " She is right. We can't stop advocating simply because we are a part of the populous group affected. Change needs to happen and we need to know that indifference hurts.


Rae said...

LOVE THIS. So glad you wrote it! This is absolutely on point and I wish everyone would read it.

Kmarie said...

Thanks! Well, someone must have posted it on Facebook because it is getting many hits...so let that comfort you:) I appreciate your response...I always get a little confused if a post gets a lot of hits but no responses...makes me wonder if it was insulting or validating:) But I guess in a way it is good because it forces me to stick to my own perception of what I put out there too. Although I do like the beauty of other voices when they have something to add so thanks for adding your beauty:)

Cynthia Kim said...

Argh, #1 is one that I see a lot and it's just . . . no. Your response here = really nailed it. Having some autistic traits is not the same as being "a little bit autistic" at all.

#3 reminds of a lot of the disingenuous excuse-making statements that I've heard people use to dismiss prejudice and bias and bigotry, both in the autistic community and other places.

The other well meaning statement that drives me up the wall is "You don't seem autistic". My standard reply is a deadpan "Thanks?" and then silence, which makes most people super uncomfortable. As they should be.

Kmarie said...

Thanks for your thoughts! I was wondering if you experienced any of this!:) It sucks and I am glad you think I expressed it ok...I really felt it needed to be addressed. I love your sentences about number 3...thats an excellent description and I agree that often people use it to dismiss bigotry.
Oh I hate that one too! I got that one from a few people and although well intentioned it some of my friends when they found out- it kind of hurt a lot...but with strangers...WHY would they think that is ok to say? It's like they are giving a compliment or something by saying I am only a little of what they believe is bad...it's a backhanded compliment that is quite insulting. I like your response...usually I give an uncomfortable laugh and change the subject...now I realize "Why am I trying to make them more comfortable when they should maybe feel a little uncomfortable to perhaps rethink the prejudices of why that would be a response in the first place?"
Thank you for stopping by!:)