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It’s not enough to do something worthwhile: you also need to do it right, or at least avoid as many mistakes as you can. In the field of disability awareness, some of the worst mistakes are also the ones that are easiest to make.
Including disability in diversity, equity, and inclusion (DEI) work is a key component to making these efforts truly diverse, equitable, and inclusive. Unfortunately, disability is too often left out, downplayed, or added on as an afterthought in DEI initiatives. There is no reasonable excuse for this.
As the new global #WeThe15 campaign reminds us, at least 15 percent of humanity has some kind of disability. And if our definition of disability were a little broader but still entirely valid, that number would be much higher. Current CDC estimates suggest that approximately 61 million Americans have a physical or mental disability.
“Disabled” can mean many things, not just someone in a wheelchair. Broadly speaking, the umbrella term “disability” includes people with significant physical, cognitive, mental, learning, hearing, visual, or communication impairments. And disability is not a hermetic, monolithic experience. People of all races, genders, sexual orientations, nationalities, religions, incomes, and social classes have disabilities.
So, any organization’s commitment to doing more and better when it comes to disability is incredibly important and worthwhile – it can also be fun and inspiring – and there’s plenty of room for creativity in how you educate people about disability and help combat ableism.
At the same time, disabled people themselves who observe the development and implementation of disability awareness content continue to notice some worrying habits that stem from valid and important goals but digress into bad habits that undermine those goals. Here are three examples of pitfalls to watch out for and avoid:
1. Incorporate the voices of people with disabilities – but do not ask them to work for free.
Never develop or present disability-specific DEI content or programming without meaningful input from actual people with disabilities, and do not expect people with disabilities in your organization to provide disability-related content or leadership. Do not ask staff or volunteers with disabilities to serve as presenters or help select or create program content without fairly compensating them for their extra efforts.
It’s one thing to accept the casual personal opinions that disabled people offer freely because they care about the issues. But it’s quite another to take for granted in your planning that disabled people will willingly put significant effort into your programs without compensation. Also, don’t forget to consider emotional labor. Some disabled people crave the opportunity to share their experiences and feelings. Others would rather chew on aluminum foil than discuss their most traumatic experiences with friends and colleagues. Either way, such intimate sharing always comes at a cost.
Make sure members of your organization with disabilities have a meaningful opportunity to build the program from the beginning, but don’t automatically delegate responsibilities or assign tasks to them unless they actively volunteer. If employees with disabilities take on more significant work in creating and leading the program, offer them substantial benefits in addition to their regular compensation, whether they request them or not.
The same goes for external consultants: if you invite an external speaker with a disability, or outsource the disability portion of your content entirely, you should compensate them just like any other external speaker or consultant.
Also, remember that having a disability is not the same as being a disability activist or an expert on disability issues and policies. The perspectives and experiences of all disabled people deserve respect. But not all disabled people are well-informed about disability rights laws or approaches to fighting disability discrimination. And don’t justify ideas, policies, and actions that are widely recognized as going against best practices on disability rights and inclusion based on one disabled person’s tolerance or agreement. For example, a disabled person might say that they don’t mind if a coworker makes fun of their disability. But that doesn’t make it okay.
People with disabilities should be involved in all aspects of disability awareness programming as much as possible, but this should be done with care and consent, and treated like any other professional project.
2. Try to make unfamiliar concepts easy to understand, but avoid using simplistic, clumsy, or offensive analogies.
If you are white, heterosexual, or otherwise socially privileged, having a disability does not necessarily give you special insight into what it is like to be black, gay, or otherwise unprivileged, just as being able-bodied and black, gay, or otherwise marginalized does not necessarily give you special insight into what it is like to be disabled.
Don’t use analogies or metaphors that equate ableism with racism, sexism, homophobia, transphobia, or other prejudice. These comparisons are tempting. Some people who haven’t thought much about ableism or ableism may think they have a good idea of what racism is and how it affects people. But while there are similarities and the experiences overlap and are complicated for many, ableism is not equivalent to racism or other prejudices, or vice versa. They all operate and affect people in different ways.
Such comparisons are oversimplified, misleading, and a disservice to everyone who experiences prejudice or discrimination of any kind. In fact, many disabled people of color and others find such direct comparisons uncomfortable.
Similarly, be careful about comparing your disability to other everyday difficulties.
A permanent disability is different from a temporary disability, like a broken leg, or a very minor disability such as needing glasses, and while disability often overlaps with poverty, lack of education, and other social disadvantages and marginalized identities, they are not the same and do not necessarily occur together.
It is right to teach that disability is not simply a medical condition but another kind of social identity. It is not so much a matter of a specific physical or mental impairment, but rather how disabled people are constrained, treated, and limited by other people.
It is right to teach everyone, disabled or not, to be mindful and aware of the physical, social and systemic barriers to all people with disabilities, whether they experience a particular disability themselves or not.
It is a mistake to think that experiences of hardship and prejudice fully illuminate the experience of disability. The key to understanding disabled people is to engage with and listen to them, rather than focusing on one’s own limited experience of something that seems similar to disability. To better understand the relationship between ableism and other prejudices and discrimination, it is important to listen to people who experience disability and other marginalized identities. Look, for example, to Black disabled writers and activists like Vilissa Thompson, who has done extensive research on the complex interconnections between disability and race, ableism and racism.
Finally, be careful not to participate in what are sometimes called the “Oppression Olympics,” where different personal and societal disadvantages are compared and contrasted and pitted against one another as to which is “worse” or “less severe,” or which communities are more “accepted” or “more empowered” in society.
In order to advance our understanding of disability, there is a strong desire for simplification, but while empathy is a worthy goal, it should not be achieved at the expense of accuracy, nuance, and respect for the real experiences of people with disabilities.
3. Explain in detail the importance of accessibility, but do not simulate disabilities.
Fault simulation seems to be useful and is very popular.
In a typical disability simulation, participants without disabilities sit in wheelchairs, are blindfolded, or use other techniques to “simulate” a particular disability. Participants explore an office space or an outdoor neighborhood environment for 15 to 30 minutes. In some cases, the simulation may last an entire day.
Regardless of length or detail, the goal is to provide first-hand experience of the barriers that people with disabilities face every day. Disability simulations also aim to create moments of empathy for the very real challenges people with disabilities face every day. The insights may feel authentic and profound. The problem is, they are misleading. The long-term lessons that actually emerge from disability simulations tend to be very shallow and misleading.
Simulation can inspire efforts towards greater accessibility. But it also often provokes fear of disability and sympathy for people with disabilities. Exercises intended for serious purposes easily degenerate into silly and insulting activities, almost like stunts, where non-disabled people temporarily “pretend” to be disabled. And most of the disabilities people experience in real life are much more complex and difficult to simulate than simply being blindfolded or sitting in a wheelchair. Chronic pain, recurrent long-term illnesses, learning and cognitive disabilities, and mental illnesses such as depression and bipolar disorder are much harder to simulate.
It’s best to avoid simulating disabilities. Instead, teach them what accessibility standards are and what their purpose is. Explain specific metrics that may seem inconsequential but aren’t actually important (such as how high a toilet seat should be or how high a door step should be allowed).
Ask actual people with disabilities to describe how they deal with things and the barriers they would most like to see removed (keeping in mind, of course, the guidelines above about finding and using disability help appropriately). Teach them that listening to people with disabilities and believing what they say is more important than just experiencing their experiences firsthand.
There are still people with disabilities who do prefer and support disability simulation, and their perspectives should be considered, but at the very least these concerns and potential pitfalls should be discussed.
You don’t have to “be disabled for a day” to learn how to remove barriers and fight ableism. Even if you don’t personally understand disability, you can learn to treat disabled people better, behave better yourself, and advocate for better policies and practices.
There is no single approach or mindset that can guarantee your disability awareness work will be flawless and complete, but it can help you avoid some of the most tempting and harmful mistakes.