Navigating Ethical Dilemmas in Disability Support and Inclusion
From ABA therapy to inclusive education: A personal journey of ethical evolution
About the Author
My name is Lauren. I am originally from Toronto Canada, but I am currently residing in Belgium. I began looking for volunteer research positions in the midst of the Covid-19 pandemic. At the time, I was stuck in a Disability Studies degree I didn’t enjoy and was seeking a broader and more scientific perspective, something my education lacked. Having done some thinking about what I wanted from my education, I started researching professors and scientists who aligned with my interests. I came across J.D. and reached out to him for academic guidance by email. I agreed to voluntarily assist in his research; in return, he taught me the invaluable skill of critical thinking and questioning everything. By writing this essay, I aim to share the insights I have gained in hopes to foster critical discourse, and to advocate for genuine inclusivity and ethical practices in both the disability field and broader societal contexts.
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Editorial Note: Light grammatical edits and writing suggestions were provided to Lauren’s original drafts of this essay. -J.D.H.
Upon graduating high school, my enthusiasm for working with children and an interest in abnormal psychology led me to pursue a college education in Behavioral Science. George Brown College, an Applied Arts and Technology school in Toronto, taught me the basics of reinforcement strategies, conditioning principles and other fundamental components that shape human behavior.
Post-graduation, I secured a position in a specialized treatment home for adults with autism, where Applied Behavioral Analysis (ABA therapy) was the predominant treatment modality. However, the unsettling realization soon dawned on me that there were morally questionable treatment methodologies associated with ABA therapy. My personal experiences of providing reinforcement, akin to training a dog, especially in scenarios like rewarding an adult for using the toilet, challenged my ethical convictions. Moreover, the disparity in the qualifications and attitudes of personnel within the facility, coupled with their mistreatment of clients, prompted a deeper reflection on the ethical dimensions of the field.
A growing number of individuals within the autism community, who have undergone ABA therapy, have increasingly shared their personal experiences, revealing a spectrum of negative emotional impacts. These testimonials often include accounts of heightened anxiety and trauma associated with the therapy. A notable critique directed at ABA lies in its pronounced emphasis on compliance, at the expense of acknowledging and addressing the root causes of behaviors. The therapy's tendency to prioritize surface-level behaviors without delving into the deeper understanding of underlying factors has been a recurring concern voiced by those who have directly experienced its effects.
A specific incident solidified my discontent when a client experienced a seizure, resulting in a hospital visit. The medical professionals exhibited an inadequacy in handling an adult with severe autism, resorting to immediate restraint despite the presence of a care team. This event underscored the prevalent medical model approach to disability in the healthcare system, where disability is perceived as a problem requiring a cure. The doctors' focus on making unsolicited comments about medication to treat autism rather than addressing the immediate seizure accentuated the deficiencies of this model.
Dissatisfied with my role and recognizing the potential harm I might be causing, I returned to education, bridging my college diploma into a university degree in Disability Studies. However, this proved unsatisfactory as well as the program emphasized advocacy to an extent that felt far too restrictive. In one notable lecture, we were presented with an extensive list of approximately 50 taboo words to avoid when discussing disabilities. Rather than providing constructive solutions, a substantial portion of the coursework centered around outlining what not to do, leaving a void in terms of practical alternatives and approaches.
The significant transition from adhering to the medical model in the specialized treatment home, which focused on attaining a semblance of "normalcy", to embracing the social model in the university program, which perceived disability as a social construct with societal barriers as the root issue, became confusing. This shift was particularly challenging as I found myself at odds with both paradigms, unable to fully align with either approach. The political dynamics and inherent discord within the disability community itself, played a pivotal role in my decision to withdraw from the program a month later.
Currently I am working as a special education assistant at a private school in Belgium. The school recently adopted an inclusion policy aiming to provide equal educational opportunities for children with disabilities. However, the implementation of this policy has brought about unexpected challenges, particularly in my work with a child with level 2 autism, whose complete integration into the educational environment is proving difficult. The existing support structure at the school falls short of meeting the needs of this student. Despite the presence of other schools in the district specifically equipped for children with similar needs, a significant obstacle arises: the need for a formal declaration from the current school stating its inability to address the severity of the disability in a regular educational setting. Ironically, the school hesitates to issue this document. The enrollment of the child appears to be more symbolic than practical, serving as a token gesture of inclusivity to enhance the school's reputation without bringing about substantial changes. Consequently, the child remains in an unsuitable environment, hindering their academic and personal development.
Navigating through these challenges, I find myself grappling with the discrepancies between policy and practice, and the struggle for true inclusion. However, these issues aren’t just found in the disability field. They are now being pushed into various sectors, exemplified by the Diversity, Equity, and Inclusion (DEI) ideology. While presumably well-intentioned, the DEI ideology exacerbates existing issues, creating more complexities than it aimed to resolve. By focusing solely on surface-level diversity metrics and token gestures of inclusivitiy, organizations fail to address systemic inequities and structural barriers. Their narrow focus on diversity quotas and superficial representation overshadows deeper issues.
My personal journey of professional ethics has been marked by a continuous quest for ethical and inclusive practices. My experiences in the field have revealed the limitations and pitfalls of existing models and approaches and have highlighted the gap between policy ideals and practical implementation. While policies may advocate for inclusivity and equity, the translation of these ideals into meaningful action often face significant barriers. This disjunction between rhetoric and reality underscores the need for critical reflection and proactive advocacy to bridge the gap. As I continue on in my professional career and education, I recognize the importance of challenging prevailing orthodoxy and hope to contribute positively to the field, by addressing these barriers and striving for true inclusive practices.
Well done. My only quibble is that I hardly believe the architects of DEI were 'well intentioned'... at least not well intentioned towards any particular individual or patient. Best of luck to you.