WhatWeNeed.Support: an open source project to reduce friction for disabled people accessing essential services and everyday life

Picture of a hand holding a pen making a list in a notebook
Photo by Cathryn Lavery on Unsplash

You know that scene in movies when after struggling through sweaty stifling months in the city the protagonists finally make it to summer by the seaside and throw their clothes over their shoulders as they run naked and free into the water?

That…only being able to reveal after the best part of a year the really exciting thing I’ve been working on.

First the tl;dr version.

A colleague and I have been working on a project funded by Experian that is today being launched open source that offers the chance of a solution to many of the instances of friction disabled people face in their day to day lives, that’s been built by and continues to centre lived experience, and now you can get involved in a number of ways to make its scope wider and its impact bigger and many of those ways feature people with lived experience not just in the driving seta but being paid a fair rate, so if you’re interested check out the site WhatWeNeed.Support and if you really want the lowdown here’s a many thousand worded paper that explains exactly how we did it.

And now the “OK, rewind, let’s start at the beginning version.”

The problem of friction

Friction. For a long time I’ve framed it as one of the world’s most underexplored and high impact wicked problems. The cumulative effects of small frictions disproportionately impact disabled people. I’ve written at length here about how that happens. They leave us less time and less energy to do the things that give people’s lives meaning. And they leave us less bandwidth to contribute our essential perspective on the world’s most pressing issues.

Friction is what Donella Meadows calls a “leverage point.” It’s the part of a system where small actions can make a disproportionately large impact. If we could make a dent in the effect of friction on disabled people’s lives, we could achieve monumental impact on a personal, on a social, and on a global level.

Friction as a problem is sometimes misunderstood because it’s a term that user experience and marketing people also like to use. When they talk about minimising friction, they are talking about making most people’s lives a bit more convenient — or making it easier for someone to buy a product from company x than company y. It’s something nice to have. This makes it susceptible to what I call the “empathy gap.” That is, because most people have some understanding of how annoying friction is for them, they think they understand what it is like for disabled people. But they don’t. They don’t understand the devastating effect seemingly tiny inconveniences can have when they build up in our lives often many times an hour every day without ever letting up, taking away energy from our batteries that already start with less charge than everyone else’s.

I’ve written here about what some of those tiny micro frictions are. They are things like overly complicated account creation systems. Having to use ways of communicating that are inaccessible when you’re trying to deal with essential services. Constant updates, improvements, and changes. And most of all having to repeat the same (often highly personal) information over and over again just to get someone to interact with you in a way you can manage.

What We Need . Support — an actionable, standardised list of support needs

Which is where the project, WhatWeNeed.Support, that I’ve been working on for about a year with my brilliant long-term collaborator Chris Fitch comes in. The project that we’re making public today, and that you can explore here.

You can read a full history of the project in the paper I co-wrote with Chris here. We go into detail on the timelines and the precise mechanics of how everything has worked to bring us to this point — because that detail is, for me, the key reason why I’m excited about the project’s potential to create genuine change.

It sounds very simple. It is very simple. Most of the hardest problems can be boiled down to something very simple — and getting here has been very hard. Which is one reason we don’t think anything quite like it has been done before.

We have created a list of supports people need when accessing services (primarily online). In just three areas so far: those around sight and sight loss; hearing and hearing loss;, and mental health conditions and dementia (the paper explains fully why we chose these — tl;dr this was already an incredibly hard project, and this was the least hard way to start). This initial work happened as part of a larger project run by Experian that is ongoing and could use this list to create significant changes for people. Experian have provided the funding for this project to become an independent being, fully open source, which will enable the list to grow, and to be used by anyone who wants to use it to improve their own service for disabled people and those in vulnerable situations.

What makes the list we have compiled this far so exciting is the way it has been created.

  • The support needs on it come direct from people with lived experience of those needs. So we know they will make a genuine impact. (we have also involved the Digital Accessibility Centre at every stage to ensure the project itself is as accessible as it can be, and we will continue to do so)
  • And they have been reviewed and discussed at fine toothcomb level with some of the biggest firms in the financial services industry. So we know they are things that many forms can implement right now.

It’s that combination that offers the potential for real change. And it’s that combination that is embedded in the way the ongoing project will operate.

The aim of the project is to produce an updated version of the list on a regular (initially after 6 months, then yearly) basis. Between each version we invite suggestions from those with lived experience for support needs that would make a genuine difference to their lives. Each cycle will focus on a different area so the list expands to have the potential to benefit more people.

At the end of the period there will be an open-to-everyone congress (we will of course make this as accessible as we can — our budget includes money for captioning, and BSL interpreters as well as full transcripts of proceedings in accessible formats — and we will endeavour always to use services that provide these accessibility needs that are run by disabled people). This will bring together people with lived experience, and representatives of organisations. And it will pull these suggestions together into an updated list. That list will then be ratified by an Oversight Group with members drawn from:

  • Those with lived experience of the needs being discussed;
  • Representatives of organisations across sectors;
  • Observers from charities;
  • Representatives of organisations that have already implemented the list.

The result will be a new standardised version of the list, freely available with a creative commons license, which anyone can implement, build accessibility tools upon, or use to educate or campaign.

The first updated version will work with the categories we already have to expand and update them as fully as possible:

  • sight and sight loss;
  • hearing and hearing loss;
  • mental health conditions and dementia

and the first Oversight Group will decide what we look at next to maximise our impact.

By working like this we hope to retain the key thing that sets this project apart: that the support needs we describe will be genuinely beneficial (because they come from the people who need them); and genuinely actionable (because they have been discussed by and tweaked in conversation with those who will implement them).

Interoperability: a concept whose time has finally come

As the saying goes, the best time for a project like this was many years ago. But saying the second best time is now feels like more than meme fodder. What we are doing with this project plugs in (pun for forthcoming sentence intended) to a growing movement towards interoperability. This is the principle behind the European Union’s Digital Services Act that is becoming law right now. And it’s the principle that drives movements like Linux and W3C whose ways of working and goals for universal standards that anyone can use anywhere have shaped a lot of our thinking.

Two factors have really driven the current interoperability drive. One, the spectre that looms over booth the Digital services and the Digital Markets Acts, is the fear of tech companies using their huge giant market shares to lock people into software and hardwares that they can’t use on any other platforms.

But interoperability also fits the sustainability agenda perfectly. How does it make sense in a world of scarce resources to need twenty different cables to charge different devices when you could have one universal cable that does them all? We see this also in the so-called “right to repair” which will help appliances last longer. And the EU’s requirement, earlier this month, that all hardware manufacturers will build devices that can be charged with a USB-c cable by 2024.

What has been celebrated less is the incredible accessibility value of interoperability. Fewer devices; fewer things; less expense; less obsolescence so the need to learn fewer new systems; fewer updates that do little for core functionality. There are so many areas where sustainability and accessibility collide. But interoperability is an area where they work in harmony.

Interoperability: Making Life Accessible and Sustainable

This project is an opportunity to show that harmony in action. To ride the sustainability wave in order to create genuine change for disabled consumers. And to provide organisations with a foundation that they can simply lift off the peg and implement.

And because all organisations in a sector will be able to describe their users’ needs in the same way — a way that benefits those users and that they can implement — this project can make accessibility interoperable. In theory the end goal could be a way for people to select the support they need from a single list just one time and have that support in place for every interaction they carry out. That, of course, is a long way off. But think of the difference it would make even not having to repeat what you need to different food delivery companies; or banks; or utility providers.

I can think of numerous areas where platforms built on this list, or just its widespread adoption, could revolutionise lives and free up time, energy, and bandwidth. From how publishing houses could make it easier for disabled writers to how home improvement grant applications could be easier to access and implement; from Council tax to carpet fitting; funding bodies empowering disabled researchers to unlock the world’s secrets to sporting bodies enabling disabled people to pursue their dreams.

How you can get involved

As I’ve said, this project centres disabled people. We would love your input in a number of ways.

  • We would love you to suggest support needs in the areas we are looking at. These should be specific needs (that give enough detail to be implemented immediately — such as the need for a particular font, or a particular communication tool or method);
  • There will be an opportunity to join our annual congress in six months’ time;
  • Get in touch if you would be interested in joining our Oversight Group as a lived experience member in future. We are committed to the principle of ensuring disabled people are properly rewarded for their labour, and pay a rate of £400 per day to members of the group;
  • Pitch us a blog post.

And of course, share

  • Tell your friends;
  • Encourage firms and other organisations who want to know how to help their disabled customers to consider implementing the needs on our list;
  • Point organisations our way if you want to educate them about what other organisations have already said they can do, and the things they could do to make a difference.

Of course, if you are the representative of an organisation interested in what we do, a developer who wants to build something based on the list, or a policy making organisation, research body or, best of all, funder, you can find out on the website the many ways you can get involved.

The launch of this project feels like the end of a very long journey, in part because it feels like it has been needed for such a long time, and the problem of friction and its differential impact on disabled lives has occupied my mind for so many years. In reality it is a very small first step. I hope you will join us on the next part of the journey.

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