“When and how did I learn about this aspect of disability before here and now?” That was a question I often asked myself during an undergraduate course where I had my first contact with the field of disability studies. There, I realized I had informally learned so much about disability in the years prior to that: through harmful media representations I consumed since I was a child, through language that assigns negative meanings to disability, through inaccessible spaces and their absence of visibly disabled people in them.
Since that first disability course, I had the opportunity to continuously learn from, and with, self-advocates, family members of people with disabilities, and talented peers from my field and other professions.
As I continue to work with people with disabilities in different settings and move closer to becoming an occupational therapist, I often reflect on how to make sure I bring the knowledge I acquired into practice. Below are three notes I keep in mind to make sure the lessons I have learned inform my daily work to promote adequate, equitable, and culturally sensitive services to people with disabilities and their families.
Communication Matters - Do Not Make Assumptions!
Communicating in an empathetic way and the call for not making assumptions are recurring themes from conversations and lectures led by people with disabilities. Although it does not ask for much, it can make a great difference when working with people with disabilities: to communicate in a way that demonstrates attention, interest, and acknowledgement of the person who is there and their lived experience. Failures in interpersonal communication in healthcare can lead to many serious consequences, such as late diagnosis and procedural errors, and it is the main cause of medical-legal complaints (Taylor, 2020). When in doubt about something, do not assume the answer is known – ask.
Celebrate and Share Positive Depictions of Disability.
The prejudicial representations of disability in the media are extensive. Besides that, mainstream media often leaves disabled people out of its productions, with about 95% of the disabled characters in TV being played by non-disabled actors. Hari Srinivasan, a nonspeaking autistic young adult, wrote about how the few depictions of non-verbal disabled people in the media he had access to growing up were traumatizing, reinforcing negative stereotypes that contribute to the limited opportunities given to disabled people. In January of this year, as a response to the movie discussed in Sasha Micek’s blog post, the organization CommunicationFIRST released a short movie titled LISTEN, featuring nonspeaking autistic people with the goal of increasing awareness about their real-life experiences. Short movies like LISTEN are valuable pieces created by disabled people that should be amplified whenever we have the chance to do so.
Advocate and Support Self-Advocacy
Disability advocacy can take many forms. It could be through the support of development and implementation of disability policies. It could be by engaging in education that contributes to the reduction of stigma. It could be by connecting patients and clients with disabilities to disability organizations that provide not only guidance in rights, but a space for culture and community. I once attended a lecture from a young man with a neurodevelopmental disability who only received his correct diagnosis as an adult. He shared how the health professionals that were working with him in the hospital he was receiving rehabilitation services connected him with a local disability organization that he was not familiar with. There, he had a chance of further exploring aspects of his disability identity and developed his roles as a disability rights and disability justice advocate, as a public speaker, and as a community leader – all of which he described as having contributed to his general wellbeing and quality of life. As professionals working with people with disabilities, we should not underestimate the opportunities of connecting our patients and clients with organizations, resources, and initiatives that they may benefit from, and that they bring value to.
References
Taylor, R. R. (2020). The Intentional Relationship – Occupational Therapy and Use of Self. (Second Edition). F.A. Davis.
