Saturday, November 4, 2017

Autistics Speaking Day 2017: Ableism in Environments That Claim to Be Inclusive

The concept of "inclusion" in education: what does it mean?  According to this article, the four primary characteristics of properly-implemented "inclusion" in the context of education are as follows:
"1. Children, regardless of ability, are taught in general education classrooms with same- age peers.
2. Inclusion allows all students equal access to the curriculum through differentiated, adapted and/or modified lessons.
3.  The majority of learning needs are met in the classroom where support services are brought to the child.
4. Children of all abilities are included in all activities throughout the school, such as class activities, recess, lunchtime, assemblies and field trips."

In reality, from my personal experience--both as of late and throughout my education history--I have noticed these phenomena: the "bad" and the "ugly" taken from the same article:
 

"5. Students are included in the general education classroom for only part of the day and then go to a self-contained room for the rest of the day to receive different lessons.
6. Only mild to moderate students are included in the general education classroom while students with severe needs receive their education in a self-contained special education classroom.
7. Students with special needs are included in activities that can easily accommodate the child. For example, the child has to fit the activity; the activity does not have to fit the child."

And,
"8. Inclusion is a program that is delivered by the school and hosted in 'inclusion classrooms'.
9. Inclusion is a place in the school where students with special needs can receive some interaction with their typically developing peers.
10. Students with special needs are included in enrichment activities only such as Music, Physical Education and Art.
11. Students with special needs are considered included when they are 'mainstreamed' into classrooms. This means a student with special needs must be able to keep up the with grade-level work of the other students without any extra support."

 As of late, I have had the opportunity to work in a life skills classroom as part of an elective at my school.  I'll say it now: I genuinely adore each of the students.  Not in that saccharine, false manner that so many boast about when they claim to care for Disabled people, yet truly do not.  I mean, I have taken the time--and will take even more time--to learn about each of the students as individuals, their strengths and weaknesses, their preferences, and anything else there is to know about them. 

However,  the sheer irony embedded in the syllabus of this course is that those who work in the life skills classroom with the students are to learn about inclusion and about inclusive education practices.  How is this done, then, if most of these students take not a single subject with their peers, other than the enrichment activities listed in the "ugly" list from the aforementioned article--and even then, they are not fully-included, given not accessible, grade-level work, but given work that is far below their grade level, and made to, usually, sit on the fringes of the few spaces in which they are included?

How am I and any others supposed to learn about inclusive education practices when they aren't even being modeled?

What's worse for me, is witnessing the potential drained from some younger Autistic youth.  One of them--who I will simply call "N--" was told the dreaded phrase "quiet hands" simply for rubbing their palms on their desk and rocking back-and-forth when I allowed them to borrow my earbuds when the music class became a sensory nightmare.  There were behavior analysts speaking about their struggles when they were walking right alongside them, hearing everything they could say, but not bothering to include them in the conversation about their own emotions and education.  N communicates mostly via echolalia and gestures, but is denied access to an AAC device, even a no-tech solution such as writing in a notepad--but, they sure are great at forcing verbal speech out of them.  N can read and write, but was forbidden to take the same test as the other students, despite the fact that it was multiple-choice and fill-in-the-blank.  I was not permitted to help N, either.  

 When I raised the concern to the teacher who facilitates the life skills program, I was told that I was "looking too much into it" when I proffered my (passionate) belief that it was morally and ethically objectionable to have an adult control all movements of a young teen Autistic pupil, and that it discourages self-expression by telling an Autistic person to stop stimming. The teacher insisted that stimming would be a "distraction" to the neurotypical students.

I was too aghast at that moment to say anything else.  What did they mean, a "distraction?"  Is it not antithetical to the philosophy and the practice of inclusion to discourage an Autistic or otherwise Disabled pupil not to visibly-express their disability?  Do students who use wheelchairs need to use less-visible mobility aids as a prerequisite to inclusion?  Must femme students cover their bodies because they will be a "distraction" to cisgender, heterosexual males?  Do students of color need to "cover-up" innate aspects of their racial or cultural heritage--something that, all over the country, actually happens?

A dangerous, destructive path is being trod when an educator who claims to serve Disabled pupils in an "inclusive" environment defies one of the fundamental goals of inclusion: to promote acceptance and harmony among Disabled and able-bodied/neurotypical peers, to facilitate learning and build relationships between each other.  What they do not realize in their sentiment, is that they are subconsciously implying a disdain for Autistic traits, and by denying an Autistic student self-expression when it is needed the most, they are inadverdently teaching their peers to shun and shame them.

In an ideal World, Autistic people and other people with disabilities would be as instrumental in designing curriculum and in implementing true inclusive education practices as would be non-Autistic, non-Disabled people, whether they had the professional credentials to do so or not.  Because they are not, we must keep identifying and calling out these injustices and rightfully dealing with them.  

Inclusion is a right, not a privilege.  It is not something that has a necessity for prerequisites in order for it to work.  It is about recognizing the human and civil liberties of Disabled people and actually keeping true to our words when we say that we believe that is what inclusion is. 

Tuesday, June 27, 2017

What The Recent ADAPT Protests Have Proven To Me (plus, a Poem!)

On Thursday, June 22, 2017, members of the disability rights group National ADAPT staged a "die-in" in the office of Senator Mitch McConnell, protesting what the proposed cuts to Medicaid funding will do to thousands, if not millions, of Disabled and chronically-ill children, youth, and adults, as well as senior citizens.  Given the nature of this blog and its intended audience, I am not going to provide a link to any news coverage of the protests, as I assume that most of you would have read about it and/or have seen video footage of the protests.  

When a local news station of mine covered the protests, I, out of sheer curiosity, decided to visit the Facebook page of the station and see what members of my community had to say.  I do not "like" the page of the news station, as many reactions and comments on the page are known to be quite repugnant at times, and when it came to the ADAPT protests, that was of no exception.

The typical comments included things along the lines of their own opinions of the inefficacy of Obamacare, and how they did not wish for federal tax dollars to pay for "other people's problems."  There were people who spouted the usual, "If these people would get a job, they wouldn't need to complain about this."  There were some Disabled folks who asserted that they did not use Medicaid services, almost as some sort of stand of supposed moral superiority.

About a week or two before the protests, I remember seeing the same news station's Facebook page run stories about a local author who claimed to "speak through the eyes of" his adolescent Autistic son, and that story that circulated about a woman earning an honorary MBA alongside her Disabled son (who earned an MBA of his own), just for helping him navigate campus life.  These same members of my community were gushing and awing over how "heartwarming" these stories were, the first, of course congratulating the father for claiming the voice of someone whom he should not ever claim to speak for, and the second, for detracting from the fact that it was the young graduate who had done all of the work to earn his degree, not his mother, who should have merely enrolled in the same program as her son and have earned a degree of her own.

What does this tell me?  

My community, which is largely socially-conservative, is more concerned about inspiration porn and the feels they get from it, than they do the rights of their Disabled citizens.  These comments do not surprise me, for other than my local chapter of The Arc, few disability-related organizations in my area seem to express interest in actively collaborating with Disabled adults in their advocacy efforts and meaningfully including them in board positions in their organizations.  Most fundraisers for Disabled people in my area are for prepubescent children and, on the rare occasion, for adolescents.  This is not a mistake: it is simply the further perpetration of societal attitudes that Disabled children are inherently more "innocent" and "deserving" of charity than are their older counterparts.  Especially for Autistic people, is there a push by parents for services such as ABA and segregated homes in rural areas disguised as "integrated living." 

Anyone who has reservations about the Affordable Care Act (ACA) is free to express them as such, and there are, in fact, some flaws in it.  However, if there is the sudden cut of Medicaid funding, the people aforementioned may well be burying their loved ones or whisking them away to segregated institutional settings.

Be careful what you wish for, conservative, non-Disabled America.

 This-past Saturday, I wrote a brief poem simply entitled, "A Love Letter to ADAPT:"

Activists of ADAPT:
I love you so much.
The fact that you have existed for four decades
and have gone relatively-unnoticed by the masses
does not appear to be an accident,
for us, the Disabled population of America
do not have our history taught in the classrooms
of America's schools, no matter what level of education,
because we are medicalized
to such an extent that they know not our distinct heritage.
What was done in the office of Mitch McConnell
on Thursday, June 22, 2017 made America gaze on in abject horror,
seeing before them a reflection of this country's foundation;
they are acting as if this is so sudden, so new,
when, in actuality, this is business-as-usual,
given America's previous treatment of us.
There are some naysayers out there in the crowd,
you know, the ones who say, "you can't do this,"
or, "don't do that," or the dreaded "you're ruining your image,"
naysayers that who do not care whether the mission is accomplished,
who undermine civil disobedience in the face of violence,
who suggest that we remain silent and complacent
rather than call out transgressions prior to their arrival.
I cannot wait to pass on your epic tale of triumphs
from the seventies up to today
on down to my children, when I welcome them
into arms spread wide open,
ensuring that your legacy is, nevermore,
erased out of a dictated "irrelevance."

This isn't one of my greatest works, but it was composed out of pure passion.
Keep doing your thing, National ADAPT. 
 

Sunday, April 2, 2017

Humanizing Autism

Typical autism "awareness" does little to shine a light on the very real, very raw humanity of actual autistic people.  We become statistics to memorize, statistics of estimated prevalence data, how much we "cost" society, how many of us have additional conditions such as epilepsy, how many of us are nonspeaking, how many of us have "average to above-average intelligence."  Our humanity is erased in favor of neat, compartmentalized factoids.  With this arrives the exclusion of us from the conversation about ourselves, which, as I shall echo from people who have been doing this much, much longer than I have, is fundamentally antithetical to one of the basic principles of the Disability Rights Movement.

 Autism acceptance is the humanization of autism, because it not only forces one to shift their paradigm regarding how autism is viewed, and in turn, how autistics are viewed, but it actually forces a person to go through the arduous process of gaining our trust.  In a World where we are privy to vices such as bullying, discrimination, segregation, physical and sexual abuse, neglect, and homicide, we need people to see us just as that: human beings, not changelings captured in the midst of the night by an anthropomorphic entity that robbed us of supposedly "normal" childhoods.  

Being autistic is definitely harder.  I don't think any autistic person would deny that.  But demonizing our disability dehumanizes us.  We should be well past that stage of fear, pity, and guilt, but it still runs rampant in most mainstream autism "awareness" campaigns, even if just subtly.  

Want to learn about autism?  See as genuine potential platonic, romantic, and/or professional connections.  Talk to us, even if we do not use verbal speech.  Plenty of us converse in ASL or another sign language, through AAC, through our body language, or a mix of various communication forms.  Collaborate with us on any endeavors that we undertake, but ensure that we are center and front of stage.  Read books, scholarly articles, and essays about the history of the Neurodiversity Movement or the history of the broader Disability Rights Movement.  Reject organizations that do not meaningfully include us in leadership positions with significant executive influence, or only associate with autistics in a patronizing manner.  

 We are everywhere.  It isn't that difficult.

Wednesday, March 1, 2017

National Day of Mourning 2017

This is not a post that I wish I had to do, to be quite honest.  I do not think that anyone in the disability community wishes we had to assert the fact that we are deserving of the same basic civil and human liberties of, that anyone wishes we had to remind people that we are human beings, and that all human beings are deserving of life.

Nonetheless, this is National Day of Mourning, in which we remember the lives of the estimated four-hundred-plus disabled people murdered by those labeled as "parents" and "caregivers" in the past six years, hundreds of more cases dating back to 1980 that can be read about here. 

If you can attend a vigil in your area, please do so.  I was going to be a site coordinator in my own community, but regrettably, home life came first.  I wish that it didn't most of the time, but it did.

I truly wish that I did not live in a World in which #StopKillingUs was not controversial, but sadly, that is not the case.  It is beyond chilling to think that I or my nonspeaking, visibly-autistic cousin could have been murdered as children-- no, scratch that, even now-- and the mainstream media as well as overall society could have such a crass disregard for the lives lost.  

If you are a parent or caregiver of a disabled person, and are SERIOUSLY considering murder and/or suicide, please contact your local authorities or crisis hotline.  For disabled people, parents or caregivers of disabled people, or professionals or educators who work with disabled people, check out ASAN's 2017 Anti-Filicide Toolkit.

Tuesday, December 27, 2016

The Potency Of Autistic Emotions

Hello, everyone.  It's been almost two months since my last post, and for that, I apologize.  Offline writing has required more attention, and a great deal has been going on in my social sphere, particularly in regards to people not in my immediate family-- the few friends that I interact with on a frequent basis.

Speaking of which, that could readily tie-in with the subject of this post: that, of the potency of autistic emotions.  Contrary to the common cultural depiction of autism as being a condition that inhibits one's ability to feel human emotions in a profound manner, all-too often, many autistic people feel far too many emotions, because there is so much to intake in this World (to learn more about this phenomenon, read about the Markram Intense World Theory of Autism.)

The past month-and-a half has been a rollercoaster for me in regards to my emotional state.  For the most part, I was so joyful that I found it difficult to focus (a byproduct of excessive coffee consumption), flapping my hands with such feverish ecstasy, at times, even softly squealing a little bit.  But, of course, life has not been entirely kind to me since I last posted on here, as I have stated in the first paragraph (when is life ever consistently kind to most individuals?), and there have been some days when despair hit me.  And when despair hit me, it hit me hard.  Those happy flaps and squeals became flaps of futile attempts to distract myself from the searing pain deep in the crevices of my soul.  They became anxious flaps of fear, fear of an uncertain future, of things that I cannot ascertain, things that I cannot ascertain that are nothing short of disconcerting to me.  And, just a few days later, after pulling myself out of the darkness of overthinking on matters that do not, per se, require immediate attention, again did I flap happily, squeal slightly, hum, giggle and roar with laughter

Yet, even in my happiness, I struggled to fully comprehend what I was feeling.  Even in my despair, did flickering sparks of joy tease.  Many more times, I did not know what I was feeling at all.  

This is where the currently unrecognized condition known as alexithymia comes into play.  Many autistic people report possessing this condition, marked by an inability to identify one's emotions, articulate and express these emotions, and discern between emotions simultaneously occurring at once.  Though alexithymia is reported to affect about 10% of the non-autistic population, an estimated half of all autistic people also have alexithymia, as this one study on moral acceptability shows in its abstract.  

I am sure that anyone reading this has read, at least once, the June 2016 article on autism and alexithymia from the Scientific American's Spectrum magazine on autism research entitled, "People With Autism Can Read Emotions, Feel Empathy." (I will not link to it, because I personally find it ludicrous that such an article exists, as if it were not obvious that we, too, are human beings subject to feelings, no matter how they are expressed.) How is such a notion groundbreaking, I beg to know?  Ever since the deeply-flawed research of Simon Baron-Cohen and his associates in the 1980's was published and univerally accepted as fact by most professionals who work with autistics and by society at large, there has been what appears to be an ingrained prejudice regarding autistic people that has affected the manner in which we are treated and in which our lives and experiences are discussed.  Autistic people, our families, and our allies and friends have been fighting against this dangerous assumption for decades, and it has not even been acknowledged until earlier this year that, "Hey, maybe autistics do feel emotions; maybe they do have empathy for other people."

 I am only one autistic person, so I cannot speak for all of us, but from my own experience, I have been able to sit down with fellow human beings and literally ache to help them with whatever vices were plauging their lives at that time.  It would be inappropriate for me to go into specifics in order to protect identities, but I have lost sleep ensuring that those who struggle live to see the next day, that those who have been harmed know what resources are at their disposal in order to seek justice for actions taken against them, that the working class in my community have something to eat, that small children have access to educational materials that they may otherwise not receive in the education system.  Tears have been shed for so many people on my end, that I have struggled to care for myself with the knowledge that others were enduring situations that I could not provide an easy fix to, if I could intervene at all.  In my opinion, that is what a wicked state of profound love for others does to an individual, as unhealthy as some of what had happened on my end often can be.  The overwhelming care for others and for what they feel can overflow to a point where I nearly drown myself-- and that, is what causes for me to appear distant.
  
When I am happy, this happiness is often, as I have stated above, ecstatic, full of such exuberant energy that it seems as if I cannot calm myself, a feeling that fills my heart with such joy and is one that I adore.  When I am in despair, the darkness envelopes over my head before it feels as if it is consuming my entire body.  Love, when I feel it, I feel it roughly, and become frantic when the recipient of this love is in pain.  Anger, anger is a burning fume, one that usually is suppressed to a point where which is passes, but when is unleashed, can wreck catastrophic consequences upon myself.  I do not hate, but disdain for an individual or for an idea can run deeply into me and can be a disdain that I meditate upon for a time prior to fully articulating it.

It is crucial to remember-- and store it somewhere in the deepest recesses of your consciousness-- that a part of presuming the competence of autistic people is to remind yourself that just because one's emotions may be expressed atypically, does not mean that they do not exist.  Parents of young autistic children may lament over the fact that their child does not explicitly tell them, "I love you," or proffer affection with physical contact such as kisses and hugs, but it is dangerous to assume that simply because it is not expressed through neurotypical social "norms," that it is not there at all.  In all frankness?  It is better that your child first learns to be able to express their pain, their frustration, their happiness, and so much more, before expressing what you want to hear.

I remember being an autistic five-year-old girl.  Though I had an extraordinary vocabulary for a child at that age, I still, as sensitive as ever, would cry tears of perplexion and of frustration when I could not appropriately express these emotions.  Coping skills naturally developed as I aged, but some autistic children may need guidance in developing these coping skills, which could possibly arise via a mentoring program involving interaction with older, more experienced autistic people (a topic for an entirely different post).  These tears may not have been those of a non-autistic five-year-old, but they were still my form of communicating what I did not at the time possess language to do.  

 Because, as I have stated in the eighth paragraph, emotions are profound, they are messy, and while they can be suppressed for some time, that only does damage to my psyche.