A big goal we’ve set throughout this book is to learn how to be a better ally to the disability community. Being an ally is not a self-proclaimed identity; instead, it is about the choices you make and actions you take on a moment-by-moment basis.
Unfortunately, certain types of allyship end up being performative, with people taking on the superficial label of an “ally” to feel better about themselves or to gain social standing. They may use only their words, thoughts, or intentions to virtue signal without taking any proactive steps toward action, or they may put on a show of being an ally when it is convenient for them but fail to show up in critical moments that carry more risk. Other times, allies center themselves by speaking over or on behalf of disabled people without actually listening to us. These instances occur when allyship is one-sided and defined only by the ally instead of by disabled people, with the disabled person being seen as inferior or a charity case.1
Because of this, I like to distinguish between the roles of an ally (sometimes called a co-conspirator) and an advocate. While allyship might refer to the type of support where an ally provides assistance to the cause of an underrepresented or marginalized group, advocacy refers to active participation in a larger cultural, political, or social movement.2 An advocate is someone who uses their privilege to call out injustice and who fights alongside a community to effect change. In addition to challenging and dismantling ableist attitudes and structures, non-disabled advocates with the disability community proactively work to rebuild their environments and culture with the larger goal of disability justice. The sustained, dedicated, and careful practice of this type of advocacy ultimately leads to activism.3 You do not have to be disabled to be a disability advocate.
Like everything else, being an advocate comes with nuances. An advocate helps to amplify disabled voices and give us a platform; they do not replace or drown out our voices. In your advocacy work, you must always remember who came before you and what cause you are doing this for—disabled people and our liberation in an ableist world and, on a larger scale, the liberation of all people.
There is a saying we often use: “Nothing about us without us.” It originates from the Latin phrase Nihil de nobis, sine nobis, which started as a motto for people who wanted a say in how they were governed. This led to the political slogan “No taxation without representation” during the American Revolution. In the 1990s, writer and disability rights activist James Charlton applied the concept to the disability rights movement; it was also the title of his book published in 2000.4 One example of the failure to apply “Nothing about us without us” is when non-disabled people fight for “cures” for disabilities under the assumption that disabled people would have an easier life without the disability. This is harmful because it reinforces the belief that disability is a problem to be fixed when that energy could be redirected toward advocating for accessibility. Not every disabled person wants a cure, and the treatments are often framed as miracles when they might provide only marginal benefits, if any. Not to mention, they may be expensive. I spent many years after becoming disabled going to doctors’ appointments and acupuncture sessions and meeting with neurosurgeons in an attempt to “fix” my arm. But a brachial plexus injury is known to be a lifelong injury.
In 2018, I was at a conference where the CEO of a tech company told me that deafness would soon cease to exist because of cochlear implants. Well-intended people incorrectly assume that cochlear implants “cure” hearing loss, without a thought for the fact that many Deaf people use ASL and proudly embrace Deaf culture and the Deaf community. Additionally, the cost of cochlear implants can range from $50,000 to $100,000, and the surgery may still be financially inaccessible even if it is partially covered by health insurance.5
There are also examples of well-intended inventions that were created for disabled people without our input. One was a toothbrush meant for blind people that featured a wider handle and two brush heads that came together at a 90-degree angle so that the person using it could reach every part of their teeth. However, most of us don’t need to see our teeth in order to brush them!6 Another invention was shoes meant for blind people that had magnets mounted at the instep so that the wearer of the shoes could align them in the right direction and know which was the left shoe and right shoe. But a blind person would know that anyway once they put on their shoes by feeling how each one fit on their foot.7
A more recent example of these misguided inventions is web accessibility overlays. Accessibility overlays are AI-powered tools marketed as a “quick fix” for accessibility problems, such as small text size and low color contrast, on pre-existing websites. When you visit a website, you may notice a round “accessibility” icon in one of the corners that, when you click on it, opens a menu of different options that are supposed to make websites more accessible. However, disabled users disagree. “I’ve not yet found a single [overlay] that makes my life better. I spend more time working around these overlays than I actually do navigating the website,” Patrick Perdue said in an interview with the New York Times about navigating websites as a blind user.8
Web accessibility overlay companies have risen in popularity because of their claim that their widgets will enable companies to comply with the ADA and avoid lawsuits. Some of these companies are publicly traded, with revenues in the millions, and others have raised millions of dollars in funding. Yet in 2023, more than nine hundred companies with an accessibility widget or overlay on their website were sued over accessibility, up from six hundred in 2022.9 In addition, more than seven hundred accessibility advocates and web developers have signed an open letter calling for people not to install these tools on their websites.10 These overlay companies have since hired some disabled people, but they have not addressed the root of the problem, which is that they ironically make it harder for disabled people who use screen readers to access websites that use these overlays.
Instead of using overlays, Accessibility.Works suggests a three-step process: auditing the site, remediation, and verification.11 You can also follow design best practices known as the Web Content Accessibility Guidelines (WCAG) 2 and work with accessibility experts certified by the International Association of Accessibility Professionals (IAAP). If you’re not able to hire someone to conduct an audit of your site, you can check out an automated audit such as Google Lighthouse and the WAVE Evaluation Tool to start.
As disability rights activist Imani Barbarin says, “The authorities on disabled people are disabled people.”12 Nothing about us without us. Disabled people are already regularly silenced, ignored, and invisibilized when society does not listen to us or take our concerns seriously, and it is especially disappointing when this happens in advocacy spaces. In a post on her website Crutches & Spice, Barbarin describes how the voices of disabled people are often overridden by those of non-disabled allies when it comes to creating inclusive policies or spaces, a phenomenon she equates with the all-male panels that discuss women’s inclusion in the corporate world: “To be true to the mission of disability inclusion, it requires that you [as a non-disabled advocate] think of yourself as a vessel to pass along what those in the disabled community [have] expressed rather than being our voice. Taking up space in advocacy for a marginalized group is a privilege, one that you can wield to make the public sphere more inclusive or one you can use to center yourself.”13
Instead, Barbarin suggests that non-disabled allies and advocates simply “pass the mic.” Writer and disability blogger Holly Tuke shares similar advice: “Listen to us and take our lead.… Remember that disabled people know best—we are the ones living with our disabilities and chronic illnesses every single day. When you listen to us, take note of what we’re saying, and if you can, act on it.”14 Writer Andrew Pulrang adds, “We’re not even looking for advocacy, if it means non-disabled people speaking for us, defending their perception of our rights without our full participation or consent.… It’s even more important to discover and center disabled people’s concerns, priorities, and preferences, even if you don’t always understand or agree with them.”15
Ryan Prior is a journalist and author in Washington, DC, who lives with myalgic encephalomyelitis/chronic fatigue syndrome, which is mostly in remission. During the height of the COVID-19 pandemic, when he was covering health and science stories, he developed a “laser focus” on what would become known as long COVID—about which he has also published a book called The Long Haul. He tells me,
As a reporter, my training is to look for the world’s top experts on any topic and to interview them. For long COVID, I formed relationships with the Patient Led Research Collaborative for COVID. Few of the members of this collective were formal scientists, but [the rest were just patients.] Yet they banded together across continents and often from their beds, where they were severely ill with fatigue and brain fog. The group published the first research on long COVID by early June 2020. And over the next several years, their expertise would frequently be called on by the US Congress, the CDC, and the World Health Organization. Several of their research papers were the most highly read and cited science across the globe.… Perhaps the most important insight that I’m taking with me from the last few years of reporting, advocacy, and scholarship is the value of “proximate leadership.” This is the idea that lived experience and boots-on-the-ground insight is by far the most useful way for us to solve the world’s most pressing problems.16
If you notice a problem, research solutions from disability-specific sources. You don’t have to come up with a unique solution. Odds are, disability activists already have, as we are the experts. Here’s what I mean: don’t speak for us. But I also hope you will resolve to fight with us. We are stronger together, and as Drew Dakessian writes for World Institute on Disability, “The allyship [and advocacy] of those who don’t have disabilities is essential for the liberation of those who do.”17 We all have a role to play in dismantling ableism.
I hope this book will not only teach you to be a better and genuine ally but also inspire and push you to be a proactive advocate for disability inclusion as you listen to disabled people.