Disability Visibility Summary

"Disabled lives are not less valuable, and the stories of disabled people deserve to be heard and celebrated." – A central message from Disability Visibility

1. Disabled Representation in Media is Lacking

Disabled people are rarely represented in mainstream media, and when they are, it’s often problematic. Growing up, Alice Wong saw few disabled characters, and almost none who reflected her own experiences. The rare portrayals were overwhelmingly negative, depicting disability as inherently tragic or life-ruining. This lack of visibility feeds stereotypes and excludes disabled people from shaping their own narratives.

Even after decades of legal protections like the Americans with Disabilities Act, disabled authors, filmmakers, and content creators remain underrepresented in storytelling industries. A 2019 publishing survey found only 11% of respondents identified as having a disability, meaning the vast majority of decision-making about whose stories are told lies with nondisabled people.

Alice Wong decided to change the narrative by creating the Disability Visibility Project (DVP). Partnering with StoryCorps, she built an oral history archive collecting 140 stories of disabled people to mark the ADA’s 25th anniversary. The DVP remains active on many platforms, using blogs, Twitter campaigns like ##CriptheVote, and podcasts to amplify disabled voices and reshape public understanding of disability.

Examples

• Media often portrays disabled characters as tragic figures, reinforcing stereotypes.
• The Disability Visibility Project created a platform to share diverse disabled experiences.
• The ##CriptheVote hashtag introduced disability rights into the 2016 and 2020 elections.

2. Society Devalues Disabled Lives

Many nondisabled people assume disabled lives are less meaningful. Harriet McBryde Johnson, a disability rights lawyer, often heard such comments—even from strangers in public. People would say they’d rather die than live in her body or call her "brave" for simply existing outside her home. These attitudes stem from ingrained prejudices rather than actual understanding of disabled lives.

Philosopher Peter Singer's arguments exemplify this bias, advocating for killing babies with severe cognitive impairments because he believes their lives have less value. Johnson debated Singer and countered that he confused societal prejudice with evidence. She emphasized that disability doesn’t dictate happiness or life quality—those factors depend on environment, access, and inclusion.

Changing these harmful assumptions requires listening to disabled people. Their lives are rich and full of meaning, and society must reject narratives implying otherwise.

Examples

• Public reactions to Harriet McBryde Johnson revealed attitudes that devalued her existence.
• Peter Singer’s controversial ideas demonstrate how ableism is institutionalized.
• Johnson’s advocacy challenged this perspective and highlighted societal prejudice.

3. Constant Pressure to "Cure" Disability is Harmful

Disabled people often feel pressured to seek a cure, reinforcing the idea that their bodies are inferior or "broken." June Eric-Udorie grew up hearing that her reduced vision was temporary if only she prayed hard enough or tried harder to fix it. This mindset left her feeling ashamed of her disability and trapped in an expectation for change that would never come.

For Liz Moore, who lives with fibromyalgia, the relentless search for treatments and cures dominated their life, leaving no space to simply live. Over time, they realized accepting their disability—and themselves—was the key to freedom. Acceptance isn’t giving up; it’s recognizing one’s body as valid and lovable as is.

Rejecting cure-based narratives can be empowering. It allows disabled people to define themselves instead of chasing unattainable standards set by others.

Examples

• Eric-Udorie experienced shame due to her family’s expectation she would be cured.
• Moore realized searching for a cure left them unable to live fully.
• Embracing disability as part of one’s identity fosters personal freedom.

4. Fashion Can Celebrate Disabled and Queer Bodies

Clothes are often designed for "standard" bodies, excluding disabled and queer individuals. Sky Cubacub, who needed clothes compatible with their medical condition and gender identity, found that available options were dull and restrictive. This inspired them to create Rebirth Garments, a clothing line celebrating disabled and queer bodies through bold, customized designs.

Rebirth Garments aims to empower wearers rather than force them to conform. The designs suit diverse needs, from external seams for sensory sensitivity to vibrant colostomy bag covers. Rather than hide bodies, these clothes highlight and honor their uniqueness.

Fashion holds power. By challenging notions of beauty and normalcy, designers like Cubacub make visible the joy and individuality of disabled identities.

Examples

• Cubacub’s frustration with existing clothing led to groundbreaking designs.
• Rebirth Garments provide customizable, accessible options for all body types.
• Fashion shows hosted as dance parties showcase how bodies can move freely.

5. Creativity Exists Despite Mental Illness, Not Because of It

Mental illness is romanticized in popular culture, with stories about tortured geniuses like Van Gogh fostering the idea that suffering fuels art. Writer Shoshana Kessock once embraced this myth herself, associating her creative productivity with the manic states of bipolar disorder. However, the reality was far more complex.

When she first treated her condition, heavy medication left her unable to think or create. Untreated, however, manic spells were followed by debilitating depressions that stunted her career. Eventually, she found a medical balance that allowed her to work and live without sacrificing stability or output.

True creativity comes from hard work and passion, not anguish. Disabled artists like Kessock achieve remarkable work—and not because of their disorders, but in spite of them.

Examples

• Media romanticizing Van Gogh’s suffering ignores barriers his illness imposed.
• Without proper treatment, Kessock lived in cycles of productivity and paralysis.
• Effective management allowed Kessock to thrive creatively on her terms.

6. Racial and Disability Justice Are Interconnected

Disabled people of color face unique challenges that both ableism and racism exacerbate. For example, Darnell Wicker, a deaf Black man, was shot by police without being able to hear their warnings. Such tragedies aren’t rare: most police violence victims are Black and disabled, yet racial justice movements often overlook this intersection.

Groups like the Harriet Tubman Collective emphasize that fighting white supremacy must include disability rights—and vice versa. Ignoring this interconnectedness limits the effectiveness of activism for both causes.

Acknowledging overlapping oppressions creates stronger, more inclusive justice movements that benefit everyone.

Examples

• Darnell Wicker’s murder highlighted the challenges of being both Black and disabled.
• The Harriet Tubman Collective works to include disability in racial justice advocacy.
• Erasing disabled identities from activism weakens hopes for meaningful progress.

7. Disabled People Drive Innovation

When Wanda Díaz-Merced, a blind astronomer, "listened to" the stars, her innovation revolutionized research methods. Losing her sight didn’t end her career—it inspired her to find groundbreaking ways to analyze gamma-ray bursts. Adding sound to data enabled discoveries even sighted astronomers missed.

Accessibility supports like Díaz-Merced’s method lead to creativity that benefits all. From Siri's voice recognition to adaptive vehicles, these advances often stem from disabled perspectives. Yet, inequitable access restricts many from realizing their full potential.

Investing in accessibility and inclusion doesn’t just help disabled individuals—it enriches society as a whole with their contributions.

Examples

• Díaz-Merced developed sound analysis methods to continue her astronomy work.
• Tools like Siri make daily life easier, especially for people with limited mobility.
• Lack of accessible transit restricts disabled workers in cities like New York.

8. Indigenous People Face Racist Healthcare Systems

Indigenous healthcare is severely neglected and riddled with racism. Jen Deerinwater highlights how even intake forms erase her Cherokee citizenship, lumping her identity into vague categories like "American Indian." Such systemic issues reflect colonial attitudes that dehumanize Native people.

Underfunded services like the Indian Health Service often fail to meet basic needs, while historic abuses like forced sterilizations linger in community trauma. Life expectancy for Indigenous people is shockingly low due to subpar care and environmental damage—outcomes of long-standing oppression.

Fighting for better healthcare involves addressing these legacies and prioritizing Indigenous voices in reform efforts.

Examples

• Deerinwater experiences microaggressions during every hospital visit.
• Indigenous people’s life expectancy is decades lower than the national average.
• Colonial systems continue harming Native healthcare outcomes.

9. Community Life Empowers Intellectually Disabled People

Ricardo Thornton grew up in institutions where every aspect of life was controlled. Leaving Forest Haven allowed him to thrive through community living. He found love, built a career, raised a family, and became an advocate.

Community integration, when supported by proper services, empowers capability and dignity. Thornton emphasizes that his achievements aren’t unique—they’re the result of opportunity and autonomy.

Investing in programs to support disabled people at home instead of isolating them in facilities offers better outcomes for all involved.

Examples

• Thornton’s abusive childhood at Forest Haven emphasizes the harm institutions cause.
• Medicaid programs improve independence for disabled adults.
• Community settings provide more meaningful lives than institutions ever could.

Takeaways

1. Advocate for storytelling that amplifies disabled voices and their diverse experiences.
2. Challenge internalized and societal ableism by recognizing bias against disabled lives as equally valuable.
3. Build interdependent care networks, fostering mutual support in your community.