A Reflection on Continued Advocacy Efforts: Representation and Dignity
Posted on 05/21/24 in Advocacy by Nathan Morgan, MSSA, LSW, Dir. Autistic Services
As we approach Autistic Pride Day this June, as well as the anniversary of the ADA in July, I cannot help but reflect on the triumphs and losses our community has faced head on together. In recent years, we’ve seen a much greater acceptance and understanding of neurodivergence and the inherent value we hold as human beings. In our local community of Northeast Ohio, we’ve seen celebrations of neurodivergence occur, such as Neurodiversity Culture Fest (https://www.ndculturefest.com/) which saw between 200-400 neurodivergent people and our supportive community members in attendance to celebrate and connect.
At the same time, I believe that we should not lose sight of the advocacy efforts that remain for the autism (and broader disability) community. While it is true that we have seen greater representation of neurodivergence, much of the content that exists was not created for a neurodivergent audience. Instead, these portrayals objectify disability to appeal to the feelings of a non-disabled audience. Actors with disabilities are rarely hired to portray our own stories. When we are portrayed we are relegated to roles where we exist to teach a non-disabled main character a lesson such as empathy or to demonstrate their benevolence. These forms of representation are comparable to what director and actor, Spike Lee, coined as the “Magical Negro Stereotype” which perpetuates harmful racist stereotypes. It also echoes the “Bury Your Gays” trope which seeks to tug at heartstrings of non-LGBTQ+ viewers by killing off LGBTQ+ characters to further the plot and character development of the remaining heterosexual and cisgender characters. In both of these examples, the experiences of people of color and the LGBTQ+ community are not weighed as these representations are not intended for them, in much the same way that a majority of disability representation in modern and historical media is not intended for a community of people with disabilities. These forms of representation are often forms of [Inspiration Porn]. This is a term coined by the late disability rights activist, Stella Young, who shared the meaning of this term in her 2014 TED Talk titled “Inspiration Porn and the Objectification of Disability.”.
While there are many other struggles the disability community is facing head-on together, perhaps none is as relevant to these modern times as the concept of Dignity of Risk (aka Dignity to Fail). There is much that can and should be said about this fundamental human rights ideal, far more than can be stated in a blog entry, but my hope is to introduce the general concept to those unfamiliar with it so that in the coming months and years, we can explore these avenues together as a community. The concept of Dignity of Risk raises interesting questions that our community still discusses and debates. By law, persons with disabilities have a legal right to face risk and harmful outcomes based on choices they make. These outcomes may be mitigated to a degree through the balancing of health and welfare needs by service providers and legal guardians. However, the issue some with disabilities see occurring is that often value judgements are made by those supporting in the mitigation of risk regarding these choices. These have very profound human rights implications for our community. Perhaps you’ve seen this referenced in the context of Supported Decision Making as an Alternative to Guardianship or have seen it referenced in relation to healthcare decisions. However, our community must also explore questions such as, "Should we permit an individual with disabilities to get a face tattoo and go to an underground rave with their non-disabled friends?" Our systems do not inhibit non-disabled individuals from making such choices, but I’d wager many of us might struggle to say “yes” to this question. Many disability rights advocates I’ve spoken with suggest we must as a community explore how a desire to protect and love can also dehumanize.
From my perspective, some emerging tools such as Charting the LifeCourse, which is a tool used by DoDD and others, encapsulate the value of this important concept by placing the values, interests, and goals of the person with disabilities front and center in the discussion – whatever those may be. For example, a person could identify that they would like to get a tattoo. This instrument would acknowledge this goal and the team of support around the individual would assist with the tools, ranging from education to action, to see the dream of the person realized. Some Direct Service Professionals may be tasked with taking a client with disabilities to a strip club, if the client so chooses to spend their free time in that fashion. The reasoning being, if a non-disabled person were to wish to spend their time in this way, would they be deprived of the dignity to make such a decision? I may personally object to certain choices and actions, but I recognize that I may govern my own choices and actions, but have no right to impede those of another.
As I conclude this reflection, I wanted to highlight a disability rights advocate who I’ve found rather impactful for my learning. Gaelynn Lea is a talented musician and tremendous public speaker, as her TED Talk titled “Sexuality and Disability: Forging Identity in a World That Leaves You Out” demonstrates. This presentation expertly blends the two topics I noted above, representation and dignity, through her exploration of her sexuality and humanity. As we continue to navigate services, supports, and representation, as well as the human rights implications connected to all three, I am certain that at times we may feel confused or uncomfortable by some of the answers we might find. While many in the autistic community prefer identity first language because our disability is so integral to who we are, we retain the idea that we are people first and our community continues to advocate for the idea that all with disabilities deserve the same rights, protections, dignity, and representation as our non-disabled peers. I implore you to celebrate autism far beyond Autism Appreciation Month in April and Autism Pride Day in June. Please celebrate autism through deeds, debates, discussion, education, and advocacy.
