Ableism in Public Health Discourse: What is the Effect?

By: Gwen Strickland, MPH

I went to a conference recently and witnessed a very ableist presentation about lead poisoning in children. The researchers were well-meaning. They looked at how lead poisoning altered the development of the human brain and body. The researchers found that children exposed to higher concentrations of lead had higher rates of ADHD and developmental delays as they got older.  Over the course of the rest of this presentation, the public health professional was less well-meaning. The main presenter, who had a master’s degree in public health, took a very specific angle in how she approached the prevention of lead poisoning in children. She consistently used scare tactics throughout that were reminiscent of Autism Speaks advertisements. She highlighted the behavior issues in children who had been exposed to lead and talked about how greatly this disrupted families. She started her presentation/slides with a story about a boy in South Bend who “suddenly, one day” stopped developing and it took another year after that to determine he had lead poisoning. His developmental delays, she said, lead to their family falling apart and losing their house. That this “was the reality” for children and families affected by lead. She seemed confident that lead was “causing” ADHD and autism in her healthy community. If you replaced any of the times she said “lead” with “vaccines,” she would have been called an anti-vaxxer. This speech was not, in the end, about lead. It was about finding something else to target to eradicate “problem children.” It was “I did not sign up for a child with disabilities” and lead was the scapegoat.

Later it was confirmed the effect that this had had. Someone asked what to do if they had a child with ADHD or autism and if it was lead that caused it. The researchers said “there is no way to determine that” but the other lady was clear that lead could be behind it and to test their child immediately. She was not a scientist and not able to give that sort of correlation/causation statement. Everyone in the audience left with the message that lead could cause ADHD and autism and that we could erase “problem behaviors” from those by addressing lead poisoning. I heard so many people in the hallway talking about how they just had to share with everyone they knew about this threat. I felt so stigmatized and like this was just going to increase the erasure and masking of people like me.

I only recently discovered I am autistic and in the past few years have been diagnosed with/put on medication for ADHD. I have been so high masking (hiding and over-compensating for my autistic/ADHD behaviors) my entire life and have had the privilege of being able to maintain that up until this point, but that comes at a cost. I have only just been able to start unpacking how much damage and trauma have occurred as a result of masking for this long and not recognizing what my needs are. Not even knowing that I had different needs, because as far as I knew I was allistic (not having an autistic neurotype) and the reasons that I wasn’t completely fitting into that box were a myriad of character flaws. What caused this? People like this speaker, who punish or medicalize needs like these as “problem behaviors” instead of having compassion and realizing that not all “abnormal” behavior is inherently a problem requiring a fix.

I think researchers and health advocates get the wrong idea. They think we need to be “saved” from our disability, that preventing other people from experiencing disability is the highest priority. The reality is that I don’t need to be “saved” from my autism or ADHD. I need society and our structures to accept me the way I am and meet me where I am rather than creating arbitrary rules that keep me from being able to participate fully. The reason, in large part, that my autistic/ADHD experience is that of disability is that society is not built for the way my brain works. It is also inherently traumatic to live in a world that is not built for you. And it wouldn’t be much of a stretch to make those adjustments and be cognizant that other people may have different neurotypes than you. Everyone loses when we squash the neurodiversity our species is capable of.

Though I struggle a lot with my mental disabilities even outside the constraints of a society not built for me, when I am able to be as fully my authentic self as I can, I am capable of amazing things that my allistic and neurotypical peers are not. Contrary to the pervasive narrative that autistic individuals have no empathy, most autistic people I have come across have an over-abundance of empathy and an innate sense of justice. We are often creative, have great attention to detail, and think about problems outside of the box. Autistic brains tend to do what is called “bottom-up processing.” This means that when we approach a problem or question, we collect as many details and smaller pieces of information about the problem as we can to then form broader conclusions about the problem. Allistics tend to do what is called “top-down processing,” which is the opposite. They approach a problem by finding generalities about the problem, typically based in what they already know, and then move into the details. It is valuable to have both approaches, as they can come out with differing perspectives to be considered for the problem or question.

I will end this narrative by emphasizing that if you’ve met one autistic person, you’ve met one autistic experience. We exist on a spectrum (which looks more like a radar chart, not a line from “more autistic” to “less autistic”) for a reason. We all have our own unique support needs, strengths, and struggles. But we are valuable to the human species just like everyone else and should not be erased or suppressed. If there were a magic button right in front of me that could “cure” my autism or ADHD, I would walk away. (Not everyone with my disabilities may feel this way. I have lower support needs than some and can be relatively high masking when needed, which gives me privilege.) I know my worth and I’m going to keep fighting for it, regardless of what people like this public health professional have to say about it.

Bio

Gwen haas white skin and long brown hair.  They are wearing glasses aaand a dark top.

Gwen (she/they) is the Violence Prevention Program Evaluator for the Indiana Department of Health. They did their undergraduate degree in public health and bioinformatics at Miami University in Ohio and Master of Public Health in epidemiology at Indiana University Purdue University Indianapolis (IUPUI). They are AuDHD (autistic and ADHD) and proudly part of the LGBTQ+ community. Outside of public health work, Gwen likes to engage with her special interests and spend time with her spouse and dog. Together with their spouse, they go to comic conventions and play Dungeons and Dragons. They also occasionally volunteer for a dog rescue.

In Honor of Disability Pride Month

July is Disability Pride month, and IDJ was honored to do a podcast in honor of it, thanks to OAESV- the Ohio Alliance to End Sexual Violence!

This podcast includes subjects such as ableism, sexual violence prevention, isolation, and disability pride.

Cierra Olivia Thomas-Williams and Jody Michele share their knowledge and perspectives. Cierra is the co-founder of IDJ and has non-apparent disbilities. Jody Michele is the website and communication coordinator for IDJ and has both non-apparent and apparent disabilities.

IDJ would love to invite you to join the conversation by emailing us after you listen to the podcast. Tell us what you think about the conversation, or tell us how you define disability pride.

To find the podcast and its transcript, go to http://www.oaesv.org/tealtalk. We are Episode 4. You can email us at indisabilityjustice@gmail.com.

So excited to engage with you!

A woman wearing a form fitting,  bold,  colorful outfit,  which includes her shoes, is sitting in a wheelchair that is equally bold and coloful.

Letters I never sent to you

“Letters I never sent to you” by Cierra Olivia Thomas Williams. 

The series revolves around the artist’s exploration of her experiences with violence and her attempts to communicate those experiences to an important person in her life. The series consists of one piece in transition, creating several artworks, each depicting different emotions and themes related to the artist’s trauma.

The first piece, titled “Gaslighted,” is a pencil and charcoal close-up self-portrait of the artist’s eyes and nose. It represents the moment when she reached out to the person she expected to love and support her, only to be met with disbelief and accusations of fabricating stories.

The second piece, called “Unsent,” features a self-portrait of the artist’s crying face against a black background. The word “LISTEN” floats in the artwork, while ripped-up letters that were never sent to the person are collaged into the piece. The text fragments express the artist’s desperate attempt to convey the truth about her experience with sexual violence and her struggles with its aftermath.

The third piece, titled “Suffer,” shows the transformation of the artist’s face from pain to rage, eventually turning into a black bear. The artwork incorporates Miwok words, representing descriptive terms for various aspects of the environment. The bear symbolizes the artist’s intense emotions and the anger she feels at not being believed.

In the final transformation, depicted in “Bear Eating People,” the artist’s sad self-portrait is consumed by red, yellow, and black shadow fingers. The Miwok term for “bear eating people” replaces the word “listen,” symbolizing the artist’s transition into a vengeful bear that represents her rage and frustration at the lack of belief and support she encountered.

Close up of rage and pain

Gaslighted

Media: Pencil and charcoal close-up self-portrait of my eyes and nose. I called the person who should love me the deepest and told them what happened. They said I was making up stories.

Listen

Unsent

Media: Charcoal, pencil, and collaged words, images, unsent letters, and a recycled 2021 calendar A self-portrait of my face crying. The word LISTEN floats on a black background with my crying face being pulled into the darkness by red and black fingers. The text is made up of words from ripped up letters I never sent her. The pieces of letters say, “This is no lie. It was sexual violence. Crisis. I can’t decide how it makes me as an adult person. Manic again, scary, unthinkable. Not neurotypical skills. And this is what I remember.” There is a winding stairway from my temple and my chin. At the end of the spiral stairs at the bottom of the piece are boats facing away from the pain.

Medium: Charcoal and pencil, photography. Bear Eating People In its final transformation, suffer. My face is overcome with red, yellow, and black shadow fingers-pulling on me. The Miwok word for “bear eating people,” or “Hutcumi,” appears where the word listen once appeared. My sad self-portrait is transforming into a murderous bear to express the rage I feel at not being believed.

Suffer

Media: Charcoal and pencil, photography. The transformation of my face from pain to rage, from human to black bear. Miwok words are filled with descriptive terms for things found in the environment that you might encounter and interact with. For example, you may come across a hairy bear, or a lazy bear. Yosemite is the word for murderous bear.

Bear Eating People

Media: Charcoal and pencil, photography. In its final transformation, suffer. My face is overcome with red, yellow, and black shadow fingers-pulling on me. The Miwok word for “bear eating people,” or “Hutcumi,” appears where the word listen once appeared. My sad self-portrait is transforming into a murderous bear to express the rage I feel at not being believed.

Cierra Olivia Thomas Williams

About the artist

Cierra Olivia Thomas-Williams is a fat and sassy thoyewa (disabled) Miwok cisgender assa (woman) with salt and pepper hair. She is smiling into the camera and is wearing a pink floral shirt in the picture. Cierra is a survivor of poly violence with CPTSD, generalized anxiety disorder, major depressive disorder and is on the bipolar spectrum. Cierra is a Prevention Specialist at Indiana Coalition Against Domestic Violence, where she co-founded Indiana Disability Justice.

Housing Justice is Violence Prevention

Housing justice serves as a vital component of violence prevention, as it directly impacts the lives of individuals with disabilities and their ability to thrive. In the United States, the lack of accessible housing poses significant challenges, with less than 1% of housing being wheelchair accessible and only a fraction of that suitable for those with moderate mobility difficulties. These statistics highlight the pressing need to address the housing crisis and ensure equal access for all. In this blog post, we will explore the barriers faced by individuals with disabilities, the financial burden they experience, and the importance of incorporating their voices and needs into housing solutions.

Barriers Faced by Individuals with Disabilities: Approximately 64% of households in the US rely on assistive devices, underscoring the widespread impact of disability on housing requirements. However, the availability of accessible housing remains dismally low, with fewer than 5% of residences deemed livable for individuals with moderate mobility difficulties. This lack of accessibility perpetuates exclusion and denies individuals with disabilities the fundamental right to housing.

Financial Burden on Renters with Disabilities: A staggering reality is revealed in the financial strain faced by individuals with disabilities. In 2018 alone, over 4 million renters with disabilities spent more than half of their monthly income on rent, mortgage, and utilities. This excessive cost burden not only limits their ability to meet other essential needs but also exacerbates the cycle of poverty and inequality. It is crucial to recognize that individuals with disabilities are more likely to be extremely low-income renters, further exacerbating their housing challenges.

Discrimination and Marginalization: Discrimination against individuals with disabilities persists, contributing to their housing insecurity. They face higher rates of discrimination, limiting their choices and opportunities. To address survivor homelessness and housing insecurity effectively, it is essential to prioritize the voices and specific needs of survivors who are most impacted, including Black immigrant, LGBTQ+, and individuals with disabilities. Unfortunately, these needs often remain an afterthought in conversations surrounding actionable solutions.

Resources for Inclusion and Change: To delve deeper into the subject, we recommend accessing the following resources:

Housing, Disability Justice, and Sexual Violence Prevention” by Natalie Sokol-Snyder: This 4-part blog series provides valuable insights into the foundations of disability justice, reasonable accommodation mandates, independent living supports, and prevention strategies. It offers a comprehensive perspective on the intersection between housing, disability justice, and violence prevention.

The Importance of Home Healthcare” on the Hub: Engage in a thought-provoking conversation with Jody Michele Courtney, Danielle Pitmon, and Diane Pitmon, who shed light on the significance of home healthcare in supporting individuals with disabilities and promoting accessible housing.

Learning from Lived Experiences: Policy Solutions from Culturally Specific Communities to Increase Survivor Access to and Retention of Safe Housing” – National Resource Center on Domestic Violence: This report focuses on policy solutions to enhance survivor access to safe housing. It emphasizes the critical need to include the perspectives and needs of marginalized communities in creating effective solutions.

Pursuing Housing Justice: Interventions for Impact: this This guide profiles a series of policy and programmatic interventions that advance housing justice, as defined in Building a Housing Justice Framework: “Ensuring everyone has affordable housing that promotes health, well-being, and upward mobility by confronting historical and ongoing harms and disparities caused by structural racism and other systems of oppression.”

The journey toward housing justice and violence prevention begins with recognizing the pressing need for accessible housing for individuals with disabilities. It is essential to break down the barriers that perpetuate inequality and discrimination, ensuring that housing solutions prioritize the needs of survivors most impacted. By embracing inclusivity, advocating for policy change, and amplifying the voices of marginalized communities, we can forge a path forward toward a more just and accessible future for all.

By Cierra Olivia Thomas Williams
Indiana Coalition Against Domestic Violence
Indiana Disability Justice