By Sam Farmer, Neurodiversity Advocate, Autistic Writer/Author/Public Speaker
The attitudes and beliefs I hold are rooted in my lived experiences. My evolving attitude around the “disability” label is no exception. I have thought long and hard about what disability means to me because society decided many years ago, when I was a very impressionable and vulnerable 3-year-old, to label me as such. A life-altering label tends to have a profound impact, and I was ill-prepared for it at that tender young age.
Growing up as a not-yet-identified autistic diagnosed with an auditory processing learning disability, I could not help but fight the label I had been assigned but had not asked for. Knowing I was different from most of my peers in this respect was impossible for me to accept. Unlike the vast majority of my elementary school classmates, I was a special education student by virtue of the learning disability diagnosis, which singled me out in an unhelpful way, rendering me a target for bullying.
Challenges around self-awareness, and consequently, awareness of others, made it difficult to establish true friendships and made it too easy for me to put my trust in people who were unworthy of my trust and who, predictably, betrayed that trust. My self-esteem suffered as a result. It took me well into adulthood to re-claim my sense of self and learn how to love who I am.
I celebrated when, come 5th Grade, I exited the special education classroom and became a full-time general education student, allowing the accomplishment to delude me into believing that I had finally moved past my disability.
I subsequently rejected accommodations that would have helped me perform to my true potential, insisting instead that I be evaluated on the same terms as my peers, allowing me, yet again, to invalidate my disability, though only in the pretend world living inside my head. This “disability is toxic” mindset persisted until very recently, at which point something unexpected happened.
I own my beliefs as well as the lived experiences from which they stem. But my beliefs and experiences are those of but one individual: me. In hindsight, it seems as though I became so fixated on my own interpretation of what it meant to be disabled that I simply was unable to acknowledge the perspectives of other people who identify this way.
Somehow it finally dawned on me to research and take to heart the sentiments of other disabled individuals in my social media circle, after which my attitudes about my own disability and disability in general finally became less problematic and more positive.
Many in the disability community believe in what is known as the social model of disability. The social model, with respect to autism and neurodiversity, recognizes that differences in neurology are a reflection of the neurological diversity which naturally exists in the human population. External influences such as society’s expectations around socialization, communication, and behavior, which were not established with neurodivergent individuals in mind, create disability, not neurodivergence in and of itself.
Conversely, the medical model of disability renders autism and other neurodivergent diagnoses (ADHD, for example) as conditions that need to be fixed or cured. The medical model describes these as disorders, as indicated in The Diagnostic and Statistical Manual of Mental Disorders (the DSM). Disorder implies that there is something wrong with us in that we deviate from what has been defined by society as the “normative way of being”, and anything that falls outside that norm is viewed as abnormal or undesirable. As such, those I have corresponded with in the neurodiversity community mostly agree with me in my disdain for the disorder label. It pathologizes what to us are naturally occurring neurotypes.
As an autistic, I have been a believer in the social model of autism for quite some time, but because of all the challenges and adversity I faced after being diagnosed as learning-disabled, I connected the disability label to the medical model and its emphasis on pathology, viewing it as being equally as toxic as the disorder label.
And so I started to use “learning difference” over “learning disability” to describe myself and referred to the disability label’s necessity with respect to qualification for essential services and supports as “regrettable”. Not anymore.
Only now does it occur to me that the disability label is worthy of acceptance if it is associated with the social model whereby outside, societal factors disable me, not that I was ever intrinsically disabled? Others in the neurodiversity and disability communities have opened my eyes to this outlook, which I have chosen to adopt.
The external influences which accounted for why I felt disabled when I was growing up were rooted in the attitudes, decisions, and actions of other people: being otherized by many of my non-disabled peers, being bullied, and my placement in special needs school programs, for example.
Many of the disabled individuals to whom I have listened embrace their disability as affirming a core aspect of who they are. Some use it as a means of self-empowerment. They acknowledge that there are supports and accommodations that help them be successful, without which society becomes a disabling force.
One disabled woman admitted to me that she and many others she knows proudly use the disability label when describing themselves and reject alternative labels such as “differently-abled”, arguing that using the disability label more often than not is the best way to destigmatize it. Another asserted that if disability were to be dismissed as a harmful label, the lived experiences of disabled individuals would be wrongly invalidated.
The most thought-provoking statement an individual expressed about his disability was his pride in the label because of how it speaks to the adversities he has overcome and the barriers that continue to stand in his way. He uses the label to honor those before him who made his journey possible. For these reasons, his disability is his most valuable possession.
In the final analysis, it is important that we feel free to use whatever labels and language we see fit to use in describing ourselves. Most of those in the neurodiversity and disability communities who shared their views with me is fine with the disability label, although some are uncomfortable with it just as I was until recently.
Another simply didn’t care how she may be labeled, whether disabled, disordered, or otherwise as if to say that she is comfortable enough with who she is such that it doesn’t matter what others may think of her.
No wrong answers in this case. All of these sentiments about disability are legitimate in that they are rooted in lived experience. All of them, therefore, deserve validation. As for where I now stand, for the first time in my life, I am ok describing myself as disabled and I am open to referring to my learning disability as just that. If anybody wants to describe me as being disabled, that’s all well and good. I will subsequently feel validated. A truly wondrous thing happened when I opened my mind to other perspectives.