Protection FROM what? Protection FOR what?
Last week I had the privilege of being part of a panel at the STEP Global Conference. Our subject was protecting people in vulnerable situations. I was absolutely thrilled to use this to reflect on exactly what protection means, and how too often it can be part of the harm it seeks to prevent. It was also a wonderful chance to talk about WhatWeNeed.support, the open source project I’ve been working on for almost a year that has the potential to revolutionise how disabled people interact with the services we need to use.
Here is the transcript of my talk in full.
Chris Fitch, with whom I’ve worked for nearly two decades and who is one of the UK’s leading experts on vulnerability, likes to start every talk he gives by reminding the audience that the key question when it comes to vulnerability is “vulnerable to what?”
I want to do the same, because when we talk about protecting vulnerable people, the key question is similar: protection from what?
Asking it like that instantly raises an important issue. Because the things we want to stop happening are things that we want to happen to no one. But when we talk about protection, we mean that different people require different levels of intervention in order to achieve the goal of something not happening to them.
This again is interesting, because it frames intervention as something inherently outside of the equation. I want to at least question that. I want to suggest that interventions designed to protect can be part of the harm that we seek to protect people from, and that this requires us to pursue a more rigorous definition of what it is that we want to protect people from, and what we want to protect people FOR.
And having done that I want to talk about a specific project designed to help achieve this more nuanced protection by centring the voices of disabled and vulnerable people, articulating their needs in conversation with those organisations whose role it is to implement them.
My focus will be specifically on disability, because that’s where my experience lies — both experience as an advocate, campaigner, start-up founder, consultant and researcher; and as lived experience: of bipolar disorder, ADHD and dyspraxia
My particular interest is in empowering disabled people to flourish rather than simply survive. As a researcher at the Futures Thinking Network in Oxford I look at the way narratives and the assumptions behind them can exclude disabled people’s agencies within spaces, and how reframing them can re-empower us within those spaces. As an activist and a founder, I focus on a very particular aspect of this: the empowerment of disabled people through the elimination of the frictions that disrupt and disable us on a daily basis and whose cumulative effect is catastrophic — I will discuss how this happens in more detail as we go.
So let’s go back to the initial question.
Protection from what?
When you are disabled, you get used to people talking about how to protect you. The language itself is, in many ways, alienating; and it frequently serves the function of infantilising us and denying agency. Both through the assumption that rather than being empowered by the removal of the barriers that stand between us and the experience of the world others enjoy, the world is a dangerous place from which we must be kept for our own good — this is, of course, the narrative that opens many fantasy and science fiction novels. And just as the narrative arc in those novels sees us entering into and discovering our own way of engaging with and finding agency within the world from which our “betters” have sought to separate us; so when it is done well “protection” does not hide us away but empowers us within a world that may, without it, be hard to navigate.
If the world is a steep hill, then protection can and should be a wheelchair to help us navigate it rather than a door to keep us safe from it.
But the context in which wee encounter protection is, sadly, often a life long experience of having our autonomy taken from us by the structures of the world rather than enabled by them.
We are used to having our autonomy taken
This happens when we can't access things others can; because we cannot make decisions others can; because we lack the platforms to advocate for ourselves and others who research us, claim to work for us fill that gap and make decisions on our behalf; because many of the things we need come at too high a financial (access to good working environments) or socio-political (access to transport that we need) cost for society to deem it a priority; most of all, and the theme to which we will return because we lack the bandwidth for reflection levels required for agency.
In this context protection should be FROM loss of autonomy and protection FOR the exercise of autonomy.
Often, however, protection can cause a loss of autonomy.
I want to suggest this can be because we don’t spend enough time, when we think about protection, asking “protection from what?” And that often when we do consider accessibility or autonomy as a trade off against security, we do so in the context of a hierarchy of harms that is either explicit or implicit in which — first, material harm is placed above harm to agency; second, there is insufficient weight given to the extent of actual material harm that can come from a loss of agency; and third that we overstate those harms that are acute and direct in comparison to those that are chronic and complex because we conflate the difficulty of measuring our impact on the latter with a lack of impact, and because the policy, procedure and regulation on which institutions rely in deciding on how to implement protection for those at risk of harm are all geared to how easy it is to trace the cause of a harm and not the extent of the impact of that harm
So what do I mean when I say that protecting people from harm can in itself be a cause of harm, some of which is material, and some of which is chronic and deep.
One of the key tools that institutions have available to them to protect those vulnerable to harm is the addition of friction to processes. This may take the form of additional steps of verification or authentication; it may take the form of delays to acting upon instructions; it may take the form of additional consent requirements; or the confirmation of an action by a third party, for example. All of these add friction to a process that is not essential to the basic business of the process itself; and is not experienced in the same way (even if it is present) by many who are not vulnerable in the same way.
Friction is something of a buzzword, and that has made its place in discussion slightly difficult.
On the one hand it is framed as just being about ease or user experience — and that makes it very easy to say that the friction that we build into security and protection is a price worth paying for those things.
But cumulative friction for those who start with fewest resources can
- reduce the overall resource level to a dangerously low point and
- use resources at a faster rate because of the additional processing difficulties we face above and beyond regular friction .
On the other hand, friction is used as a beneficial tool for preventing harm — whether that is multi-factor authentication and other methods to prevent exploitation and fraud; the introduction of gambling blocks to protect those with problem gambling from financial harm; or “sleep on it” systems to stop impulse purchases by people during episodes of poor mental health.
These frictions do have a crucial role to play in protection. But they remain frictions. And the framing of friction as either beneficial or a user experience issue prevents us from understanding the much wider impact of friction on disabled people in particular — who are often the very people the frictions are there to protect.
There are of course harms when my data are shared and I don’t want them to be. But there are also harms when I want my data to be shared and they are not. This is one of the many instances in which the cumulative effect of friction can be incredibly damaging — having to share and share again. And the information we are required to share is often intimate, and as a result traumatising, and retraumatising.
Disabled people experience more low level frictions in life than others. Processes that many take for granted and can complete “automatically” or with little exertion can require disabled people to dig deep into their resource bank, and often leave us either unable to complete that task or too exhausted to complete further activities. The more of these frictions we experience, the more of our bandwidth is used.
And we have fewer resources to begin. So our bandwidth is eroded both more quickly, and from a lower starting point. And as Shafir and Mullainathan have shown in their work on scarcity, that leaves us less able to engage in life in the way others take for granted. It makes our lives less rewarding. And it prevents us contributing to society and gaining meaning and validation from that.
This creates an obvious downward spiral, and is a major contributor to the unequal outcomes in life between disabled and non-disabled people, as reflected, for example, in the mental health income gap highlighted by the Money and Mental Health Policy Institute.
To get the protection of those who are vulnerable to harm, including disabled people, right, we need to understand what its fundamental purpose is.
It is analogous to seeking to replace single use plastic straws without harming the disabled people who use them by denying them a fundamental enjoyment of public spaces — either by making them identify themselves needlessly as “special cases” (that often aren’t catered to anyway) or by providing alternatives that seem to serve the same purpose but do not, because people have not understood what function it is that single use plastic straws serve.
In the case of straws this full consideration might lead us to invest in more sustainable and less harmful materials that replicate the function of plastic.
For us what it does is to reframe the essential task of protecting those who are especially vulnerable to harm. Because it allows us fully to weigh the consequences of the protective measure itself. And because within the definition of protection it allows, even insists, that we consider what people are being protected FOR. And that includes being protected so as to enable the fullest possible exercise of autonomy.
Rethinking protection doesn’t necessarily mean removing frictions that serve an important purpose. But it does mean that by understanding the harm from which we seek to protect people, and the life for which we seek to protect them, slightly more holistically we might consider balancing autonomy and data management; better still we might consider that once we have found A way of protecting data we have not solved the protection question, and need to continue investing in lower friction ways to achieve the same result, not as nice to have but as an essential part of the essential journey — just as straw makers should continue to invest in materials that better replicate the function of single use plastic.
I want to close by talking about a project I’ve had the privilege of working on for the past year that sets out to help solve this kind of problem
What We Need . Support is an open source project that seeks to produce a series of lists of standardised support needs, covering different situations, built by people with lived experience, and tested for their ability to be acted upon — both from a practical and a regulatory standpoint — by the institutions whose job it is to implement them.
The project, which has just gone live, has so far focused three areas: sight and sight loss; hearing and hearing loss;, and mental health conditions and dementia. An initial 9 months of 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 in accessing financial services.
Experian have also provided a further 18 months funding for this project to become an independent endeavour, 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.
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 — these are not solutions thought up by well-meaning allies to imaginary problems. Nor are they a wishlist that could never survive contact with financial and regulatory reality. And that combination of aspects is embedded in the way the ongoing project will operate.
The aim of the project is to produce an updated version of the lists on an annual 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 different areas of support so the list expands to have the potential to benefit more people.
We are also very keen to expand the reach of the project beyond financial services.
Economic abuse has been high on the priority list since the start, and we would love you to consider getting involved, because we know this is an area whose complexities present many challenges, and your insight is essential in helping to get the support needs of those at risk of abuse right, so that they are both beneficial and actionable. Please do visit the site, connect on LinkedIn, or email info@whatweneed.support if you would like to find out more
