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I told her Disability must be fixed if this is the only life we have, and if we live again, it will be fixed then//

If your head were broken and the division fell out/ memory, sounds into words, sights into numbers/ attention a collage of impressions stripped from context//

Except there is no cure, only desperate offerings/ oxygen therapy, elimination diet, blood transfusion, chelation// We speak in tongues, writhe on the ground/ broken headed//

— from “The Apiary,” middle section of sped

 

The other day I saw a teenager circling a bumpy running track.  Like many students I’ve met, he used a wheelchair, wore a helmet, and communicated via computer.  He grinned at me and held up a small boombox playing Journey’s “Don’t Stop Believin’.”

No matter what I do with the rest of my life, I’ll never again use the word “special” without “education” echoing after.

When I tell people I work in special ed, they say things like “What meaningful work” and “Thank you for your service”—even “God bless you.”  It happened in the elevator a few weeks ago:  A neighbor I barely know managed to ask what I do and tell me I was “really contributing to society” between the garage and the first floor.  I debate whether to disclose the backstory:  I wanted to move in with my boyfriend, and I found the job on Craigslist.

The ad said Change the world—teach.  It said No teaching credential necessary.  In fact, in this age of scrambling to dismantle, revitalize, or reinvent public education, the “alternate route” program to which I applied only accepted people without state teaching credentials.  I’d taught adults how to write and had run a tutoring center.  I felt ready.

I found myself with dozens of other future teachers in a musty hardwood auditorium in the district administration building.  We filled out reams of forms, got fingerprinted, bought money orders to submit to various state offices, took tuberculosis tests, filled out more forms.

Across the table sat a woman who worked in the district as an instructional aide before deciding to become a teacher.

“Did you read the pre-training manual?” a man asked her.

“God, no,” she said.  “I got five pages in, and they kept talking about autistic students, and I had to stop.  They’re not autistic students.  They’re students with autism.”

She didn’t elaborate, and to the untrained ear, autistic versus with autism sounded like Stewie and Brian debating the correct pronunciation of “Cool Whip.”

Special ed (“SpEd”) swept me into a new world of jargon and military-style acronyms.  Special ed teachers say things like this daily:  “We just got a new kid, ID/ED dual diagnosis.  His IEP from the last district didn’t have a BSP and was missing the FAPE page.  Honestly, I can’t believe they didn’t at least do an FBA, if not an FAA.  And he’s in RSP.  I don’t even think an NSH SDC would serve him.  We need to refer for ERMHS right away.  I bet he’ll end up in SBDT, if not NPS.  There’s no way CE is enough.”*

My first summer in the classroom, the term that concerned me most was “runner.”  With only six students, four staff might seem like too many, but two of the students tried to bolt whenever they had the chance—one with such fervor that we kept an aide between him and the door at all times, and outside the classroom, he wore a harness.

My mentor teacher meant well, but she was only with this group for the summer, and her expertise lay with students less impacted by their disabilities.  Confronted with mostly nonverbal students with severe autism, she resorted to the tactics behaviorists discourage:  Giving attention for negative behaviors, frequently saying “no,” commanding instead of enticing students.  The resulting environment swelled with noise—tantrums, students shouting “NO” back at the staff, whimpering, shrieking.  My co-teacher and I looked into the faces of young people who could not communicate with standard spoken English and flooded them with standard spoken English.

The students, in turn, plugged their ears, closed their eyes, and hummed.  When the bus doors opened in the morning, we heard a combination of humming and wailing, sounds that continued through the day, one or more students at any given moment keeping up the drone until the doors closed behind them in the afternoon.

Though headed for middle school in the fall, two students needed diapers, and one had gastrointestinal issues so profound we had to balance keeping the runners in with airing the smells out.  Amidst the other noises:  Startled squealing, an aide groaning, air-freshener spraying.  We read the same two children’s books almost every afternoon because the students, lacking their much-craved routine the rest of the day, knew the stories by heart and would sit nearly still, nearly quietly for twenty minutes to listen.  I never made it past Wednesday without coming home crying.

I got two weeks off between the end of the summer session and the beginning of the school year.  Certain it was better for everyone’s well-being that I not work in an autism classroom, I took a placement as a Resource Specialist, a teacher supporting students with milder disabilities to take regular education classes.  I spent part of the break finishing the yoga certification I’d started a year earlier, in the aftermath of losing my father, when I’d gone looking for a deeper sense of balance.  Now a new kind of turmoil needed calming.

In preparation for our co-teacherless fall classes, our credentialing program told us to come up with rules and consequences, to create “no excuses” classrooms with mutual respect and no tolerance for slacking.  I borrowed rules from the examples in our handouts, something along the lines of “Keep hands, feet, and objects to yourself,” “Follow directions the first time,” “Be prompt, prepared, productive, and polite.”

Rather than worrying about rules, though, I soon realized I should have pondered how to handle adolescents too embarrassed to come to my classroom, to have any association with me, not because they didn’t learn things when we were together, but because I was in the special education hallway, because I was a special education teacher, my mere proximity a potential condemnation of their capability in the eyes of their peers.  Gone were the days of severe-autism lack of social awareness.  Now my students were special, and they knew it.

* * *

“Special” is supposed to denote extra, individualized instruction—deserved special treatment—over and above the standard attention teachers give to students.  But in American education, “special” boomerangs back and points to the deficiency that warrants the extra support.  On schoolyards, “special” connotes slow, broken, less than, different in a bad way.

In Culture in Special Education, Kalyanpur and Harry describe American culture, and American public education, as low-context.  A low-context culture does not see a world expansive enough to include special needs, so divergences from the norm receive a disability label.  Because the pervasive American ethos is one of individual liberty, not collective duty, the special education system must help the person with a disability change to fit the world.  By contrast, a higher-context culture might explain another’s dependence as the duty inherited by a family and one acceptable long-term role in society; higher-context cultures may not label individuals with special needs “disabled” or try to “fix” anything.  In fact, what we think of as disabilities may truly make people special in a higher-context culture, treated with greater respect or regarded as spiritually advanced.

Though part of a low-context system, I spent a lot of time in the classroom thinking about context and proportion.  Well-adjusted adolescents masturbate, but not with vacant stares in the middle of circle time, the way some students in the autism classroom did.  Lots of students talk back to their teachers, but most don’t throw desks and destroy the classroom when frustrated by assignments, a not-unheard-of occurrence in mental health programs.  Shyness or a phase of social awkwardness is one end of an acceptable spectrum of sociability, but when it crosses over to complete lack of eye contact and refusal to discuss anything other than paleontology, we might be looking at Asperger’s.  Some people have better memories for detail than others, but a student with a learning disability in working memory might not remember the first half of the teacher’s sentence by the time she gets to the end.  Humming doesn’t usually signal pathology, until it rises to a jarring, insistent moan and the hummer scrunches his eyes shut and plugs his ears to block out his classmates.

Still, nuances of behavioral context take a backseat to the legal guidelines public educators must follow, guidelines that don’t focus on the possibilities of difference.  Politicians proclaim all students should achieve the same things, not that each should pursue a unique path.  Paradoxically, each individual having the right to live life to the fullest, on an educational level, means a system that pushes each student to live life to the most average.  The American educational dream emphasizes independence of a particular kind:  moving out, working, and supporting oneself.  Disability is pathology within the individual that impedes independence, and the special education team must mitigate that pathology so the student can live “normally.”

There are strengths to this worldview, namely that it avoids giving up on students who can achieve greater academic success with help, who can become contributing members of society, who can live, if not alone, then with assistance and some input into their lives.  This path beats lifelong institutionalization.  Neither a higher- nor a lower-context view is objectively superior; both have strengths and weaknesses.  Still, the American approach to special education creates emotionally fraught contradictions:  Parents and their advocates come to us wanting cures from our services, but to be eligible for our services, children must meet the criteria for a disability—and by definition in our system, disability has no cure.

The set of qualities that define the thirteen eligibility categories for special education are, by definition, not a matter of context—not the result of poor schooling, low attendance, disruptive home lives, cultural/language differences, or other external factors that can impact student achievement.  We rule out external factors and then use a normal distribution model—bell curves based on standardized assessments—to identify the lowest-functioning 10-12% of students relative to their age.  According to this model, because disabilities do not result from contextual “nurture” issues, they must be individual “nature” issues, physically/cognitively inherent to the student, and not fixable.

The federal Individuals with Disabilities Education Act and California Education Code define the special education eligibility categories, but other government legislation mandates that all students, regardless of disability status, be proficient in reading and math by 2014.  Even with President Obama shifting the policy focus to college- and career-readiness, we’re in a bind:  We sort students based on government-defined innate dysfunction that impedes educational progress, but we also try to help everyone cross a narrow, government-defined finish line that often far outstrips children’s estimated potential.  States and districts face sanctions if students don’t keep pace with proficiency benchmarks, or if districts exempt more than a small fraction students from yearly No Child Left Behind testing. There is no guidance for how to hurdle the inherent conflicts.

* * *

The American model of education grinds against the optimism that brings many teachers to the field in the first place.  I knew a student who wanted to become a mechanic, having learned about repairing cars from relatives already working in the field.  His eyes lit up when he talked about the work, but usually he had a distant gaze and clenched jaw at school.  Twelve years old, he couldn’t read beginning first-grade texts.  When the district formally assessed his cognitive ability and academic achievement, he misspelled his last name and did not know how to correct it.  He met criteria for multiple special education eligibility categories, and tests showed below-average cognitive ability overall, though not low enough to remove him from regular education classes.  Because the federal definition of success—for everyone—is proficiency in English and math, the school staff diligently dragged him through these subjects six periods per day.  He could not take a non-academic elective because his low scores forced automatic enrollment in additional intervention classes.

He might have thrived in a vocational setting where he could practice writing and math while learning his intended trade, but the couple of programs in existence are only available to returning drop-outs or students with too few credits to receive a standard diploma.  The impulse to all but eradicate vocational education programs came as a response to a history of tracking students into tiered academic paths based on racial and gender stereotypes about ability.  But the “solution” created a false dichotomy between low-expectation vocational training and high-expectation academics.  Instead of learning skills toward his desired career path and feeling successful at school, this student made some progress in reading and math, moving on to second-grade texts.  He then sat for mandatory, hours-long state testing and randomly bubbled in answers to grade-level questions he didn’t understand.  I wish he were the exception, but I continue to encounter students with similar stories.  Federal one-size-fits-all mandates preclude special education:  Students who want to follow other paths have to fail—opt out completely—before they can pursue their strengths and passions.  I wonder how many of these students, unassisted with their desires and labeled failures, have the remaining self-esteem to develop their strengths.

The bell-curve model provides convenient quantitative measures of “need,” which helps target intervention and ration expensive resources.  Still, the numbers representing aptitude don’t capture human experience.  I remember watching a student classified as intellectually disabled, formerly known as “mentally retarded,” get a standing ovation at a talent show for a physically-demanding, rhythmically spot-on breakdance.  He mixed the music, choreographed the routine, and enlisted three classmates as backup dancers.  He spent every class but PE in the same room with eleven other students who met criteria for moderate disabilities.  Not everyone grows up to excel in math and writing, but a closer look reveals assets that defy defining children as in some way broken and unfixable.

Disability may be incurable in our system, but at its heart, disability is conceptual.  As Kalyanpur and Harry explain, our low-context definitions of disability involve reifying theories about the way the brain works.  We can’t pop the hood and say, “Oh, look at that autism build-up around his battery,” or, “Well, what do you know, the visual processor burned right up.”  Still, we talk about autism and visual processing disorders, intellectual disabilities and speech-language impairments, as if they comprise physical objects we’ve discovered instead of collections of behaviors we’ve grouped and labeled using a particular worldview.  The resulting blind spots undermine the purported goal of giving all students access to education, for instance via significantly disproportionate identification of African American male students as emotionally disturbed or intellectually disabled, pathologizing socio-cultural differences in the quest to bring everyone into one idea of educational normal.

The gray areas in identification and dehumanizing effects of centering decisions about children on pathology have encouraged a healthy backlash from pedagogical and disability rights communities.  Advocates push for student-led service teams, regardless of intellectual impairment; greater self-determination; and people-first language.  The difference between talking about “the autistic students” and “the students with autism” is essential and profound to the conscious ear, because the former literally puts the disability before the person.  We don’t teach “special ed students”; we teach students who dream like all children do, and who also receive special education services.  An ever-changing stream of labels can attempt to outpace the boomerang of negative connotation—“retarded” was once neutral and descriptive, not derogatory—but plastering new terms on a pathology approach to special needs does not change the approach itself.

Despite the uphill battle, my colleagues throw themselves into advocacy for their students; watching them humbles me.  I left the classroom when my district realized I had a particular knack for the thing that keeps federal and state dollars flowing, almost independent of actual teaching:  filling out the paperwork correctly, navigating litigious situations, implementing the requirements of the law.

I now work in a central office building that also houses multiple school programs.  I see students, but I don’t teach them anymore.  I work with teams on some of the more difficult cases, and I train teachers how to avoid making compliance mistakes that cause monetary sanctions.  I don’t earn a higher hourly rate or have greater access to scarce resources than I did in the classroom.  Instead, I’ve traded the roller coaster of daily teaching for a little more predictability, coming home neither crying in frustration nor thrilled at making a reading breakthrough with a student.  I’m not certain that’s a good trade.

* * *

Recently I took a pranayama—breath control—class as continuing education for the yoga certification I finished after my first summer of autism.  The instructor led us through brahmari, bee’s breath, a technique I encountered at early trainings but never saw the point of incorporating into my own practice.  The instructor told us it helps self-regulate, quiet the mind, and, with regular practice and meditation, bring the higher self closer to enlightenment.

“Close your eyes,” she said.  “Plug your ears with your thumbs.  And hum.”

 

 

 

 

 

* Key to acronyms:

  • ID = Intellectual Disability, formerly mental retardation
  • ED = Emotional Disturbance
  • IEP = Individual Education Plan
  • BSP = Behavior Support Plan
  • FAPE = Free and Appropriate Public Education
  • FBA = Functional Behavior Analysis
  • FAA = Functional Analysis Assessment
  • RSP = Resource Specialist Program
  • NSH = Non-Severely Handicapped
  • SDC = Special Day Class
  • ERMHS = Educationally Related Mental Health Services
  • SBDT = School- (or Site-) Based Day Treatment
  • NPS = Nonpublic School
  • CE = Counseling Enriched

 

Others’ personally identifiable information intentionally omitted.

 

 

 

 

 

(c) Teresa K. Miller 2013
follow at facebook.com/spedtkm

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