You’re disabled. Someone in your family has a disability. Or maybe you are just naturally motivated to help disabled people live better lives. And you have an idea … a brilliant idea that’s going to change the lives of people with disabilities and make a real name for yourself.
The thing about innovation in the world of disability is that there are some very specific ways it tends to go wrong. Unrealistic expectations, poor planning, and inadequate market research are bad for any new venture. But new products, initiatives, and service models intended to benefit people with disabilities are both tantalizingly easy to think of, and depressingly likely to fail or fizzle out. So before launching that brilliant new “game changer” idea that’s going to revolutionize disabled people’s lives, it’s helpful to identify some of the most distinctive ways such projects go off the rails or fail to thrive.
1. Inventions that look cool and exciting, but aren’t very useful
Every few months, we see a round of stories about some new high-tech product in development, or just about to hit it big, that’s going to “solve” a basic problem for people with disabilities, particularly those with mobility impairments. They generate a certain amount of excitement, but also skepticism and backlash. The problem is that these new products are often awesome, but impractical, and usually unaffordable for most disabled people. They also illustrate the subtle divide between two different responses to disability — between masking or overcoming specific impairments, and making everyday life with disabilities easier.
Two insightful articles illustrate this point. Rose Eveleth writes in The Atlantic about “The Hidden Burden of Exoskeletons for the Disabled,” about the downsides to the development of electronically-powered suits intended to give people with spinal cord injury a mechanical way to regain movement and mobility. And in Vox.com, s.e. smith writes critically about stair-climbing wheelchairs and other devices they dub “disability dongles,” in an article titled “Disabled people don’t need more fancy new gadgets. We just need more ramps.” The titles alone perfectly capture the problem disabled people have with so many technological innovations meant to help them.
While some people with physical disabilities do thirst for high-tech ways to walk, like exo-skeletons, what most of them really want in a more immediate way is better, more affordable wheelchairs, and more accessible buildings and neighborhoods. And although stair climbing wheelchairs are of course clever and intriguing on a purely novelty level, for many wheelchair users they are out of reach and annoyingly beside the point.
The core problem with most of these futuristic innovations is that they represent a non-disabled idea of what disabled people really need and want. They stem from misplaced priorities and a lack of understanding of what’s most useful and attainable for actual disabled people. Our notions of “defeating” disability are typically quite fleeting and abstract, while we focus more seriously on immediate, everyday needs and barriers. As both Eveleth and smith point out, some of these “gee whiz” inventions even threaten to undermine more broadly relevant advocacy goals, like full accessibility.
2. Starting new projects that others are already doing
A similar lack of perspective, though of a different kind, complicates needed efforts of disability advocacy. Disabled people in particular see scores of problems that could be, should be solved through creative approaches and campaigns. And quite admirably, some of us “step up” and try. The problem is that quite often, disabled people and even disability organizations pursue similar, campaigns and projects in isolation.
It’s one thing to run an intentionally small-scale, solo campaign if the goal itself is very specific or confined to one town or a region of one state. That’s acting locally, and even when it doesn’t connect the way it might with broader efforts, small, local efforts can be effective. It’s more frustrating when disabled people or their allies think they have a brand-new idea or strategy, and proceed accordingly, while a dozen more identical efforts also struggle for attention and success, all attempting to do essentially the same thing.
One example of a potentially great idea that keeps being replicated unnecessarily is accessibility rating and mapping apps, like AXSmap. AXSmap itself seems to be well-designed and scalable so that people all over the United States and maybe the world can use its website and smartphone app to rate places on their accessibility … thus raising awareness of accessibility and creating a growing resource for people who need to find accessible places.
Yet, use of the system seems spotty, and awareness of the app seems low. Meanwhile, similar accessibility rating systems have come and gone, each one presented as a new and exciting idea. This most recently includes efforts by Google and Yelp to add accessibility to their business listings and customer rating systems. Clearly, this is a promising idea. But instead of the disability community coming together to invest in its actual implementation, we see scattered reinventions of the same idea, none of them breaking through to become a high priority and resource.
Maybe this is just the normal evolution and reshuffling that is necessary for any new idea. But, it also may be a result of the disability community’s perception of itself. A common mistake that both non-disabled and many disabled people make about the disability field is to assume that it is small and mostly empty — a clean slate waiting for just about anyone to come an write on it. Disabled people and their allies often feel isolated and underserved. So when they decide to “do something” to solve a problem or meet a need, they often act as if they are the only people who have had that idea, the only people working on the problem.
This contributes to duplication. And while “reinventing the wheel” can be productive and necessary, it’s often wasteful and frustrating, especially for people who have a sincere desire to make a difference.
3. Promoting “new” service models that aren’t really new
Finally, one of the most troubling trends in the disability field is the retooling and reintroduction of old, outdated, and intentionally rejected models of disability services and support. Specifically, service systems that rely on centralization, segregation, and control keep cropping back up, often dressed in deceptively new and shiner clothes.
One example is the growing popularity of businesses established specifically to employ people with disabilities … such as coffee shops employing people with intellectual and developmental disabilities. To their founders, (often parents of sons or daughters with I/DD), and to most observers, these look like creative and integrated solutions to the difficulty so many disabled people have getting hired in “regular” workplaces. The jury, so to speak, is still out on whether these businesses are really just slightly adjusted sheltered workshops, or else truly voluntary, integrated workplaces fostering real opportunity and fair pay for their workers. But disability activists are deeply skeptical. They see too many ways that such ventures can become sentimentalized, limiting, abusive, and exploitative. The problem is that so few people are even asking critical questions about them.
In a similar vein, there is a growing trend in services for autistic adults that revolves around building … literally from the ground up … planned and organized “intentional communities” or “campuses” where autistic adults are intended to live safe and regulated lives. These “new” solutions to a host of real and perceived problems faced by autistic adults, and especially their families, look to longtime observers like little more than spiffed-up, modernized versions of the squalid and abusive institutions and “state schools” of the past. While they may appear and fully intend to be high-quality, nururing, enlightened and supportive communities, by definition they also appear to be returning old and rejected models of segregation and control over disabled people, rather than true integration and empowerment.
Old, discredited practices never seem to go away entirely. Wait a few decades and they will surely be revamped and revived by someone with little or no understanding of why the old model was left behind in the first place. This is also then a symptom of the broader disability community and its allies having chronically short memories, and not enough exposure to disability history.
The good news is that all of these pitfalls can be avoided, or at least confronted and dealt with in straightforward ways. Here are five steps to take before committing to a big, new disability idea.
1. Google it. No really!
Simple Google word searches aren’t always the most reliable way to do deep research, but it’s still a good way to start getting a better sense of what’s going on in the disability community. Read articles, look at product catalogs and reviews, connect with disability organizations and disabled people you see in your search results. A few basic searches can absolutely help you avoid obvious duplication, not to mention plagiarism. It can also help you identify possible conflicts you could unintentionally provoke with significant segments of the disability community.
2. Run your idea by as large and diverse a group of disabled people as you can, and listen to what they say.
Just because you are disabled, or someone close to you has a disability, doesn’t mean you know what most disabled people want, need, and think. You can never satisfy everyone, but getting a roughly representative sample of opinions from actual disabled people … with different kinds of disabilities, different races, cultures, and backgrounds, different life experiences, and from different regions … can help ensure your idea is at least in the ballpark. If you aren’t sure how to connect, try contacting your nearest Center for Independent Living. Also, take the time to connect with disabled people on Facebook and Twitter. Don’t be shy! Be respectful of people’s time though, and don’t ask for too much work on their part without offering to pay them.
3. Be very specific about what makes your idea new, unique, and wanted by disabled people.
If you are going to reinvent the wheel, be fully aware of that, and make the best case you can upfront for why a particular wheel needsreinventing. Above all, do your best to answer the question, “How is this product, project, or program going to be better, easier, more liberating, and more affordable for people with disabilities?”
4. Join with same or similar efforts already underway.
If you discover that your idea isn’t new at all, and that there are lots of people already hard at work on it, don’t despair, join in! A lot of initiatives by disabled people and their allies fail because: a. the innovator wants to be the star of their own project more than they actually want to achieve the project’s goals, and b. the projects lack broad popular support and buy-in from enough disabled people to be viable. Explore other ways to contribute ideas an energy other than starting your own thing.
5. Be prepared to let go of your idea if it turns out not to be new, unique, or wanted.
Sometimes, giving up your own brilliant plan and joining in with others is the most productive and game-changing thing you can do. There is indeed still plenty of room for innovators and entrepreneurs in disability culture. But there is also a great need for people to join with existing leaders and creatives to make their ideas come to life and work.
The first step for any of us is to do our research and connect with the disability community … with an open mind and our egos in check.
All Rights Reserved for Andrew Pulrang