Tuesday, August 26, 2014

The Rhetoric of Ableism dating back to Aristotle, Autistics Don't need Your Awareness and Other excellent Autism Links Written By Autistics for greater Autism Understanding, Autism Advocacy, Autistic Communication and Ableist Behaviours Regarding Autism


The following are some fantastic links to explore regarding Autism, written by those who have experience in this way of Being. With each link (click and it will open in a new window to read at your leisure) I will post a brief highlight from the article. I have emailed these links to the Autism Societies around my home because I believe they are THAT informative and important.

http://musingsofanaspie.com/2014/08/25/i-dont-need-your-awareness/
"...We feel misunderstood because nonautistic people keep telling our stories, without asking us for our input. We feel misunderstood because nonautistic people make assumptions about what it’s like to be autistic and then present them as fact. We feel misunderstood because, like the adult in the video, people are talking to us and at us and about us but they’re not listening. I don’t need this kind of awareness. And I certainly don’t need to be tolerated. I need acceptance and I need for the voices of autistic people to be the ones speaking about autism..."

*** http://downwitdat.blogspot.ca/2013/07/r-evolution.html
"...In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression.  They were quickly medicated, restrained, controlled.  No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened.  It was "to be expected".  That was autism when I started my career.  Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more.  Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.
Quite frankly, I feel a little this way after a while if I don't pace myself.  If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes.  I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office.  Certain clothes hurt.  Sounds grate, smells gag.  I don't have autism.  But I can relate, even if only in a miniscule way.  That had to be learned.  Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome.  But it did.  I did... and was completely horrified at how I had viewed my fellow humans."
***

sds.org/article/view/1665/1606  
She argues that "Disease, deformity, and physical features different from those of the majority were linked with evil and sin, and so it is not surprising to find these alleged imperfections attached in artistic representations to historical, legendary, and contemporary figures who were viewed as ignoble or evil."18 Mellinkoff maintains that this artistic tradition was not particular to the period on which she focuses, tracing "an amazingly consistent pattern of thought [that] has persisted in Western society, from at least as early as ancient Greece into our own time."19
Using physical deviance to render evil visible saturates the Western artistic”  
”Confronting ableism as visual, ideological, and epistemic problems does not require us to set aside efforts to change the material order of society—such as working to provide access to public spaces—but it does empower disability literature, art, slogans, and protests as crucial to the effort to change what disability means. If we locate the problem in disability, then the ableist absolves his or her responsibility for discrimination and may not even recognize its presence. If we locate the problem in ableism, then the ableist must question her or his orientation. The critic's task is to make ableism so apparent and irredeemable that one cannot practice it without incurring social castigation. This requires substantial vigilance, for ableist thinking pervades the culture. For example, as I write this, I am tempted to use medical metaphors to explain the task and script something like "we cannot simply excise the tumor of ableism and heal the culture, for it has metastasized and infiltrated every organ of society." Yet this metaphor relies on an ableist perspective that motivates with the fear of death and turns to medical solutions to repair a body in decay. Using it, I would endorse and perpetuate ableist rhetoric, just as I would by using deafness as a metaphor for obstinacy ("Marie was deaf to their pleas for bread") or blindness to convey ignorance ("George turned a blind eye to global warming"). The pervasiveness of these and similar metaphors, like the cultural ubiquity of using images of disabled bodies to inspire pity, suggest the scale of the work ahead, and the ease with which one can resort to using them warns of the need for critical evaluation of one's own rhetoric. Yet the task can be accomplished. Just as feminists have changed Western culture by naming and promoting recognition of sexism, the glass ceiling, and patriarchy—admittedly a work in progress, yet also one that can celebrate remarkable achievements—we can reform ableist culture by using rhetoric to craft awareness and political action.”


http://geekysciencemom.tumblr.com/post/90417081147/advocacy-and-self-advocacy-whats-it-all-about

..."How can you help an advocate and a self-advocate?  First, listen to them. Their concerns are valid and ignoring them and explaining that it is not that bad or the problem does not exist does not help people.  It makes the situation worse. Second, help a self-advocate understand their rights and responsibilities.  Self-advocacy is about empowerment and the more knowledge a person has about the problem, the better prepared they are in finding a solution. Third, help with stress management.  Advocating for yourself and others can take a heavy toll on you, mentally, emotionally, and physically.  Self-advocates need support and understanding and so do advocates."
***

http://autistictimestwo.blogspot.ca/2014/03/why-awareness-is-not-enough.html
..."Many years ago, I thought that any conversation about autism was a good thing.  I thought that the  more people who knew about autism, the better and easier it would make my life and my son's life.  You see, we are both Autistic and it's not always been an easy road when faced with the ignorance and judgments of other people.  So, seeing people celebrating Autism Awareness in April seemed like a "Really Good Thing".  
I slowly came to an understanding and appreciation of the huge difference between autism "awareness" and autism acceptance.  Awareness means that the rhetoric surrounding autism is dominated by people who are NOT Autistic.   Parents, professionals, even siblings.  Acceptance means that  you don't just ask for our input but you recognize that we are going to lead the conversation. Awareness means that there is going to be a lot of misinformation.  Because the people creating "awareness" do not have the lived experience of being Autistic.  Often, they don't even consult with us when talking about us.   Acceptance means  respecting diversity, valuing our humanity and recognizing and appreciating our place in the community and as experts on the Autistic life experience..." 
***

..."For that to happen, autistic individuals–including autistic children–need to be allowed to communicate a broad range of messages in the ways that are natural for them. Forcing a child to make eye contact or to stop flapping is the equivalent of forcing them to speak a foreign language. It’s telling them that if they want to use behavior to communicate more than distress, they’ll have to speak another language because theirs is substandard and the people around them can’t be bothered to learn it.
“Behavior is communication” has to apply to more than just a small subset of behaviors or it’s no better than “quiet hands” masquerading as acceptance."
***
.."How do we do that then? How to we change thousands of years of underlying ableist metaphors?

One, we have to self-reflect, examine and then change ourselves.  How do we really feel about people with intellectual disabilities?  About our kids with developmental delays?  Do we see them as broken?  Not quite right?  Lesser?  A challenge?  (To who?  To you?) It's only going to go downhill from here? How about the other way:  are they somehow superior to your other children?  Blessed with preternatural powers?  Is that extra chromosome made of anything other than genetic material?  Do you see those with Down syndrome as anything other than an equal, than human?
Then you too need to enter rehab, my friend.  "
***

http://musingsofanaspie.com/2014/06/03/improving-access-to-health-care-for-autistic-adults/
..."
  • We often have atypical symptoms and atypical reactions to medications
  • We often have difficulty describing our pain, symptoms or illness in a way that doctors understand
  • Many of us have had bad experiences with the medical system because of communication barriers or the way we experience our bodies
  • Sensory sensitivities, communication barriers and bad past experiences can cause us to avoid seeking out medical care when we need it."
  • ***
http://musingsofanaspie.com/2013/02/28/my-anxiety-is-not-disordered/
..."Unfortunately, it’s not about what I want. Social interaction has a real physical cost for autistic people. If I don’t listen to the voice of caution in my head and limit my interactions, my body will eventually take over and limit them for me.
When I’m in a situation where I feel comfortable, I can handle longer interactions. If I have to deal with unstructured activities, unfamiliar places, new people, rapid shifts in conversation partners or topics, or any of a long list of other things I find challenging, I’ll hit my limit sooner. An hour might be all I can deal with before I start feeling a strong need to escape.Since being diagnosed with Asperger’s, I’m getting better at “reading” myself. The anxiety, the need to escape, the withdrawal that precedes the uncontrollable shaking–these are not things I need to be cured of. They are signs that I need to take care–yellow lights to be heeded–and I’m learning to listen to them..."
***
http://aspergersgirls.wordpress.com/2014/08/20/bipolar-or-aspergers/..."For me, there are some distinct differences between bipolar and ASD, the primary being that I can predict, analyze, and understand my emotional states. I am aware of how I feel, not some of the time, but all the time. I can watch myself get happy, and I can step back and analyze the direct reason, and even theorize when the happiness will end. My behavior is not unpredictable. In retrospect, after I experience what might be seen as a ‘high’ or a ‘low,’ I can always find a trigger; sometimes the trigger is as simple as something I ate or someone who showed up at my door. In addition, much of my feelings of frustration, despondence, and discouragement are directly related to my executive functioning ability: the way in which my brain organizes information or doesn’t organize information. My executive functioning challenges can result in an inability to perform simple daily tasks, such as showering, dressing, errands, phone calls, or cooking. My lack of being able to perform simple tasks will cause sadness and disappointment, feelings that can easily spiral into a form of depression—a depression with an exact cause, other than biological.
***
http://ollibean.com/2013/01/05/autistic-autism/..."Pain comes in different ways, to all people. This is not autism, this is life. Seizures are bad, but they are not autism. Motor coordination is not autism either. Many people are, or will be, incontinent. This is not autism. This could be anything. Some autistics have meltdowns and there is always a reason. Outburst is not autism. Anyone can have one.How can a parent say that a child cannot have a coherent thought if the parent can’t understand the difference between communication and speech? Some people can experience the parts of autism that can be sometimes painful and uncomfortable but this is not all autism is. Finding better services and solutions for the discomfort is a good goal that we all support. Finding a cure for epilepsy is dream and a goal I support. I am Autistic. I cannot eat by myself a lot of the time. I self-advocate and I am happy." - See more at: http://ollibean.com/2013/01/05/autistic-autism/#sthash.3keuBR5T.dpuf


..."(It’s not just the association and pressure of shame, because when ever an autistic person gets autistically excited about something, there will be people there to shame and bully them, and some of us will internalize that shame and lock away our obsessions and believe the bullies and let them take away this unique, untranslatable joy and turn it into something dirty and battered.)It’s not any of that. Those are all things neurotypicals can understand and process. This goes beyond that. It’s not anything recognized on the continuum of “normal”. It’s that the experience is so rich. It’s textured, vibrant, and layered. It exudes joy. It is a hug machine for my brain. It makes my heart pump faster and my mouth twitch back into a smile every few minutes. I feel like I’m sparkling. Every inch of me is totally engaged in and powered up by the obsession. Things are clear. It is beautiful. It is perfect. I flap a lot when I think about Glee or when I finish a sudoku puzzle. I make funny little sounds. I spin. I rock. I laugh. I am happy. Being autistic, to me, means a lot of different things, but one of the best things is that I can be so happy, so enraptured about things no one else understands and so wrapped up in my own joy that, not only does it not matter that no one else shares it, but it can become contagious. This is the part about autism I can never explain. This is the part I never want to lose. Without this part autism is not worth havingNeurotypical people pity autistics. I pity neurotypicals..."
***

(Personal Note: I do not believe in pitying anyone. I do not like being an object of pity nor do I feel that Neurotypicals would enjoy that either...However, I DO get where the author is going, even if the word choice may not be my preference. There are some experiences I lose out on because I am Autistic and there are some experiences Nuerotypicals lose out on because they are Nuerotypical.)
http://www.autreat.com/dont_mourn.html
..."This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.
Therefore, when parents say, I wish my child did not have autism,
what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.
Autism is not an impenetrable wall
You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.
Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system."
***

http://www.autistichoya.com/2012/03/letter-to-parents-of-autistic-children.html
..."To the parents of Autistic children: We need you.
Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive. But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."
***

http://inneraspie.blogspot.ca/2011/09/different-perspectives-hugs.html
..."Hugs can feel suffocating and scary. I  may not be able to read nonverbal cues well enough to know when, or how long a hug might occur, thus making physical contact seem unpredictable.  Light touch is often aggravating.  Deep pressure may work better than light brushes. (they make my skin crawl just thinking about it) One of my sons enjoy being squished up in a blanket.  This might be a good alternative to hugs.  Trust is important and trying to force physical contact in one way to be sure I will not trust you.  Let me cue you when I am ready and be gentle.  Provoking anxiety will only make me  feel more distrustful and leery.  I can show my affection in other ways, like doing things for you to show I think of you and care.  Please, look for alternative ways I might be showing my love, like remembering to do a chore for you that you dislike, or making something for you.  Some children that are on the severe end of the spectrum like to carry around objects from the people they love most.  This can be shoes, clothes, jewelry, or other personal items that have your scent on them and remind them of you.  This is their way of being close to you."
***

http://www.disabilityandrepresentation.com/looking-into-language-a-study-of-how-medical-students-view-disability/
..."Moreover, only in an ableist society, in which the values of individualism and independence are held in high esteem, could a term like “dependence” take on a negative valence. Dependence on others for help need to not be seen as infantilization, helplessness, or tragedy, but as an indication of the interdependence of all human beings and as a reflection of a basic human need for assistance and comfort. The failure of the study to investigate the implications of these types of words lessens its usefulness is terms of understanding how to change thinking about disability...."
*** (On this post I disagree with her on First Person Language. See this post for more: http://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/  But I like that she gives an exploration of how medical students view disability.)

We were told that many Autistic traits are just a sign of our “sin” and we need to “turn to God and our issues will resolve themselves." When meltdowns and temper tantrums happen and we deal with them differently than most parents do, because the tempers are usually from either sensory overload or frustration over wanting/needing to do something ect, and NOT from blatant mean spiritedness or vengeance, we are labelled as “giving into their sinful nature.” Although we can not blame someone for their stance towards sin (and it is a prevalent ideology in culture) we can distance ourselves from that input, try to advocate when we can, but then leave that door open when the person clearly is not going to try to see a different perspective. For there is only so far you can go when someone believes that way...in relationships and in meaning. We see all as equal in differing ways, even those who have called us evil for embracing the ideas we have. We see them as no worse or better than us, but we DO see them as people who can not have influence in our life or a strong voice, and for that we distance in a respectful but healthy manner until their choices bring them to a place of compassionate being. If not, we can compassionately BE separately...and even though, from their perspective that may be hurtful or they will not understand, it is because of the construction of each reality, and the idealism and rhetoric of the story we tell ourselves, that we can not possibly enter into dialogue about life together because we are speaking two separate languages...thus there needs just kind and firm space. Our life has been so beautiful since we have implemented this goal of interaction. It’s harder, and we are probably misunderstood more as purely selfish, but we know what we are and we respect others for what they are even if we chose not to participate in their particular aspect of living in our one short life. 
If you have any thoughts or links you would like to leave, feel free to do so in the comments section.

4 comments:

S said...

Thank you for sharing this post and the thought provoking links/articles. I agree -Autism and Aspergers is a way of being.One cannot jsut "take away" this "way of being" from a person and expect the person to be sane. If you take away certain parts from me, I will feel really uncomfortable perhaps. My emotions and moods drive my creativity. So everything is related.
Even within this community, I can see a lot of diversity.
Sometimes, I feel like I am behaving like everyone else and that is so sweet and I feel good. Yet, there are times, I feel so "different" from everyone else and I start questioning myself "why me? "
Reading through the articles on ASD/autism in your blog has helped me immensely in gaining insight into myself. It has also helped me to accept others. Most important, I have been able to forgive myself and accept my quirkiness. It feels good knowing that all people are not the same and sameness in nature does not really exist. It gives relief to my soul thinking that even if I am different, I have the right to live and the right to feel loved and accepted.
I like your new photos that you have put up on your blog sidebar.
I have been rather busy-I have not been able to read your earlier posts. But I will try to catch up soon.
Take care,
love,
S

Kmarie Audrey said...

S: I always enjoy your comments and I entirely understand being busy!:) You are right everything is related and even within these communities there is TONS of diversity.
I do that sometimes too:) No the sameness really does not really exist and you do have the right to feel loved and accepted.
Thanks:)
Let me know if that mail comes to you!
Love
K

Amanda@runninghood said...

Such good information here. I look forward to passing your blog on to others. I noticed your comment on Momastery and came to check you out. I see you have a post below on Dealing with and Understanding Meltdowns... As a mom to three, I have noticed that they are all so very different. My son is 5 and I've often fallen into the trap of labeling him (to myself) as "difficult" but I know there is more to it than that. I'm continuing to work to understand him and find the best ways to parent him so he can grow up loving himself and having the tools to be who he is and learn the way he learns. And as a teacher by trade, sites like yours are insightful and valuable!! Thanks for writing!

Kmarie Audrey said...

Thank you Amanda. The journey to understanding is extensive and fraught with steps forward and backward...I am an Aspie myself and I am still adjusting to new ways of re framing how I view myself 5 years after diagnosis:) It makes it easier to understand my kids on the spectrum though, So I can't imagine how hard it would be to not have the same sort of experience. It is very brave and wonderful that you are working to understand him...you are an awesome mom! One of the greatest gifts we can give our kids is the awareness of self. I am glad my site is insightful and valuable ( I took Early Childhood Development in the earlier years and Sociology recently but I ended up quitting both at differing years because even though some of it was good, I could not fully get behind the institutional way of learning...although I do believe everything has some merit, but for me - my path needed to be different:) I so admire good teachers though and what they have to work with! You are invaluable to our world too and we need people like you!:)
I will try to check out your blog later:)