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Two recent tweets show just how misguided disability innovation is.
We can invent wheelchairs that look cool for crawling up stairs but are incredibly awkward to use in real life, but we can’t implement existing, perfectly practical technology to make universal transportation more accessible.
It would be a stretch to say that the time, money and ingenuity spent on an impractical product like this stair-climbing wheelchair is the reason why regular forms of transportation can’t be made more accessible to wheelchair users. But it seems ironic when you consider that the two posts were tweeted just one day apart by Emily Radau, a disability rights activist and author who is also a wheelchair user. And at a Department of Transportation public meeting last week, airline representatives collectively spent thousands, perhaps millions, of dollars (and hundreds, perhaps thousands of hours of expertise and creativity) trying to avoid making passenger planes more accessible to people with disabilities.
Corporate greed and selective government “fiscal responsibility” can be blamed, at least in part, for these outdated priorities. But another factor is the continuing disconnect between disability-friendly design and innovation in general and the actual disability community and its priorities. A problem with much disability-friendly products and “innovations” is the lack of authentic input from actual people with disabilities. This affects not only certain aspects of design and mission strategy, but also what people decide is important to build and address.
The majority of wheelchair users want a wheelchair that is durable, versatile, reliable, and above all, affordable for many. Overly complicated and expensive wheelchairs designed for very specific and occasional needs may look great in an Instagram post, but they don’t do much. And it’s no exaggeration to say that the money and attention poured into the coolest gadgets takes resources and attention away from less exciting products that people with disabilities can buy and use in a variety of ways every day.
This is not just a technology problem, but a problem with any product or service offered or marketed to people with disabilities. It also happens in the world of nonprofit service providers. New disability programs and organizations are launched every day. Some of them are certainly worthy, but many are driven by excitement and personal ambition, but without well-thought-out ideas or goals. And while the disability world is more run by disabled people than ever before, new disability services and agencies are still dominated by able-bodied people, some of whom have well-intentioned but distorted ideas about what disabled people need and want.
Someone may be genuinely passionate about disability rights and services that provide opportunities for people with disabilities. But if their only idea was conceived in isolation from the perspective of a non-disabled or disability-novice person, their idea may go to waste. Even worse, their idea becomes successful and gets lots of resources and praise, even though they don’t actually offer the kind of help that people with disabilities would want. This also happens with organizations run by people with disabilities, who can easily lose connection with the community they genuinely and sincerely tried to serve.
So what can be done to prevent disability-friendly ideas from becoming nothing more than useless novelties or misguided vanity projects?
Talk to people with disabilities who your product or idea could help
Ask them: Will this new product or idea actually be useful to you? Or is it just cool-looking and exciting and new, but doesn’t mean much? Are the people working on the project addressing your highest priority problems, or are they overlooking something far more important to you? Do you feel that the people behind the product or effort understand disability from the inside, or are they revealing misunderstandings and ableist assumptions, perhaps without you realizing it?
Talking to people with different disabilities
Try to connect with people with a wide range of characteristics within the relevant disability category. For example, a wheelchair design should be evaluated by a wide range of wheelchair users, not just a few people with the same narrow perspective. Products and ideas aimed at a wider range of differently abled people should likewise be evaluated by a wide range of people with disabilities. Length of time with a disability can also make a difference, so it’s a good idea to check with people who have had a disability for years or a lifetime, not just people who have had a disability for the first time. Finally, it’s important to have designs and ideas reviewed by people with disabilities from different races, genders, sexual orientations, income and education levels, housing and neighborhoods, and even political beliefs and attitudes toward disability.
Be prepared to hear that your idea may not work as well as you thought it would.
When you receive criticism or pushback, resist the temptation to get defensive. Remember, developing a product or idea that is truly useful for the disability community is not about fulfilling your ambitions or satisfying your creativity. Be willing to adjust your plans or shift your focus entirely to other goals. And don’t put off testing and consulting. The sooner you “check in” with people with disabilities, the less painful the criticism and adjustment phase of your project will be, because they will be leading your work from the beginning.
Instead of starting your own thing, consider joining something that someone else is already doing.
It sometimes seems like everyone wants to be an entrepreneur, and being your own boss and creative visionary can seem a lot more exciting than the prospect of “design by committee.” The most motivated and energetic people in disability culture often would rather start and run new initiatives themselves than join and revitalize projects that have been going on for years or decades.
But people unfamiliar with disability culture often have little understanding of how large and diverse the disability community is, how much has already been done, and how long it has been around. This leads to duplication. Many would-be disability innovators realize only later, or without ever realizing, that one of the reasons their product or idea isn’t successful is because there are already a dozen other people and organizations doing pretty much the same thing. This is unfortunate, and not just because of those whose dreams didn’t come true. There are already so many worthy ideas and efforts that are struggling and need more support – not new competitors or replacements.
Just because you are disabled yourself doesn’t mean you automatically understand what other disabled people want and need.
Disabled people are often isolated. Disability itself is isolating, but so are ableism, limited accessibility, and numerous other systemic barriers that narrow the world of many disabled people. So it is not uncommon for disabled people, or small groups of disabled people, to come up with ideas that fit their own experiences of disability but do not fit others. For example, there are particularly large differences in experiences and priorities regarding disability depending on the type of disability. And there are even larger differences in priorities and preferences between disabled people who have income, wealth, education, employment opportunities, physical freedom, and roots in their communities and those who are poor, uneducated, unemployed, confined, and have less privilege and social capital. These and other factors can make a big difference in how people with similar disabilities evaluate and prioritize adaptive products and programs of all kinds.
Therefore, disabled people and disability organisations also need to reach out and never assume that their particular perspective represents an accurate picture of the disability community as a whole.
The disability community needs new products, new ideas, new models of service and support, and a renewal born of new thinking and the enthusiasm of newcomers, but it’s never too early to anchor idealism in reality.
Don’t get too carried away with your first idea, and remember that an idea that seems cool or sounds great to a disabled person may not necessarily be seen that way by a disabled person.