I grew up watching day and nighttime talk shows like Oprah, Phil Donahue, 20/20, and Dateline. I read a lot of biographies about legendary public figures, activists, artist, rebels, and missionaries. Looking back, I can see that at an early age I was searching to hear my story. I wanted to see and hear it, for it to validate my experience and more importantly create a sense of identification. I wanted to hear my story but not share it. I convinced myself there would be a 60 Minutes episode someday with a person with a Learning Disability describing the lived experience of being diagnosed and medicated. However, after twenty years in the performing arts telling stories, portraying characters, attending open mics, competing in Poetry Slams, and listening to thousands of storytellers, I realized I still had never heard my story. I knew what I went through was not a typical coming-of-age story. However, I always thought someday I would hear it.
Growing up, I was surrounded by writers and poets who were teaching artists, scholars, and activists, holding multiple degrees with smart and powerful things to say. I had no voice and didn’t know my story. I was in agony. I never heard honest representation from public figures who had Learning Disabilities or ADHD. They rarely spoke about their experience in Special Ed or addressed being over medicated. Not on the mic, in movies, on TV, interviews, news, or late-night talk shows. I didn’t see it in fringe theaters or underground artistic spaces. There were no activists or social justice organizations speaking on the topic.
I began to get curious and started researching. It became a necessity to hear it after all these years, which put me on a journey of unpacking, uprooting, and dismantling my voice from years of being silenced. I needed to tell the truth of what I saw, witnessed, and experienced as a full-time Special Ed student for 9 years. It was important to show, rather than tell, the audience so they could understand how someone can get trapped in a system unjustly.
I decided the best format would be a one-woman show where I could walk the audience through the process of what it’s like to be taken out of mainstream class, segregated from friends, labeled, medicated, and put on a different academic track than your peers. I wanted to show the social and emotional impact. I wanted to show how anyone put in an adverse situation would react regardless of age, race, gender identity, or ability. What I didn’t anticipate was discovering the increased statistics of those with Learning Disabilities and/or ADHD, 30 years later, after I graduated. It became important to search and find other stories to include and investigate commonality. I began to search for others stories, interviewing Special Ed Teachers, former and current Sped Kids, activists, and advocates, conducting informal focus groups and searching for LD/ADHD social justice groups and organizations. I discovered there was no social justice organization advocating for LD/ADHD youth or adults ages 16+. Which explains why I never heard my story.
I grew up in the 80’s and 90’s in Nashville, Tennessee. In the South, the bussing system was transporting students of color to affluent neighboring schools, and the following year white students were bused to the inner city, aka “Dodge City.” I went to a forced integrated school that segregated minds into Special Education. We were put in a metal trailer in the back of the school, hidden out of view where we had minimal contact with mainstream kids. In high school, we had metal detectors on the doors, cops patrolling our classrooms, drug-sniffing dogs in our hallways, racial profiling, random drug searches, and cop cars flashing their lights in our parking lot as an intimidation tactic.
If you walked into my class you would have noticed the children with special needs- they may have had autism, Asperger’s, Tourette’s or been physically disabled. You would also see the obvious overpopulation of young black students, usually in the back of the class with their hoods up. Our classroom had no division. We were all treated as though we had special needs, even if we did not. Which meant we were terrorized by mainstream students daily. We would have quarterly evaluations, and medication adjustment, and IEP meetings that would be missed, and another year spent in Special Ed seeing more classmates disappear without notice and/or understanding.
I didn’t know then that I was witnessing the beginning of the school-to-prison pipeline that has become the epidemic it is today. At that time, the War on Drugs began, creating and fueling The Prison Industrial Complex while Pharmaceutical Drug Companies simultaneously infiltrated the school system. This made Prozac and Adderall commonplace in our homes and schools, making ADHD the number one diagnosis in America.
Learning Disability stories never feel honest to me. It’s not enough to talk about the academic struggle. The LD/ADHD representations you will see in mainstream media are the “Success Stories,” which are necessary to break stigma and false beliefs. However, advocates rarely share what it’s like to be labeled, medicated, isolated, and marginalized and avoid discussing ableism and Racism in our school system altogether. Which is not the LD/ADHD reality in our school system, prisons, and institutions.
Organizations that are fighting to dismantle the school-to-prison pipeline exclude LD/ADHD representation due to lack of knowledge and public awareness of high statistical rates. It is hard to believe at 40 years old in 2018 there is no academic analysis or critique of generations lost to a system with historical reference. There should be more political analysis with a social justice lens on how Special Education, the use of militarized police force, pharmaceutical drug companies, and the Prison Industrial Complex perpetuate the school-to-prison pipeline with inclusion of the statistics and research of students traumatized by going through these systems.
Where are these voices? I believe the reason you are not hearing floods of these stories is because the youth who are deemed ‘’voiceless’’ are shamed and stigmatized into silence and the desperate need to assimilate into their social dynamic takes precedence. What I have come to realize through years of research and interviewing survivors of Special Ed is one common denominator: Assimilation into mainstream culture takes priority over everything. We did not speak of having an LD/ADHD or our experience in special education. We experienced shame and trauma having been segregated from our friends, bullied by our peers, medicated and isolated into Special Education. We avoided situations that would stigmatize or humiliate us; that often lead to suspensions or expulsions, med adjustments, and possibly a new diagnosis. We would sacrifice our freedom and reputation to save our dignity. Every single person, including myself, felt that medication was an extreme solution and that we should have never been in Special Education. We needed to be taught differently. We collectively agreed, stigma shames while humiliation traumatizes. Trying to outrun it is exhausting and trying to heal from it is complex due to lack of research, analysis, training in the mental health industry, making one thing very clear…The shame was never ours to carry.
Academic trauma has not yet been coined or researched. We still have a long way to go in Psychology, Medicine, and Higher Education before we see real, humanistic change in our school system and mental health industry. That is why telling our stories is so important. We must not let our voices disappear or our narratives be controlled. We need to document our history and start talking about the social and emotional harm that over diagnosing and over medicating causes. And we need to talk about the trauma, stigma, and marginalization we’ve experienced. We need more diverse and honest LD/ADHD voices to bravely advocate for human rights, pushing the social justice lens further beyond centralized white men who dominate LD/ADHD advocacy. It’s important to share transparently what the reality is for all of us in the LD/ADHD community in order to see real change in our school system.
The effort being made to implement inclusion, social/emotional learning, arts-based curriculum, para classrooms, mindfulness, trauma-informed care, and restorative justice in school programs is a good start. We have a responsibility and obligation to make things better for the next generation.
That is why I’m sharing my story in a one-woman show called Learning Curve: Confessions of a Special Ed Kid. It is a social justice theater piece that serves as an artful conversation starter to engage the public in a heart-to-heart dialogue. It is not yet easy to tell the truth, but I hope that with more honesty will come more voices to bring awareness of LD/ADHD issues, not only the academic struggle but the social and emotional reality. More voices to create a sense of institutional memory of us that cannot be forgotten, silenced or erased. My hope is to build empathy in the hearts of the audience while creating a sense of urgency for teachers, civic leaders, and policymakers to see that every student has a story that is worthy to be heard and seen. I hope that by telling our stories we are holding the generation before and after us responsible to move the narrative forward. I hope you see that the voiceless do have a voice and want to speak… it’s just really a question of are you listening?
Author: @jodieknowles
Editor’s Note: Be sure to see Jodie perform Learning Curve: Confessions of a Special Ed Kid live at the 2018 BOOST Conference, Wednesday, May 2 at 12:30 pm.