Access Denied: Mental Difference and the Barriers to Shaping a Better Future
Aaron Swartz was one of the most remarkable figures of the 21st century. Weighed down by the threat of more than 30 years in prison and millions of dollars in fines for the crime of downloading too many scientific journal articles, he committed suicide at the age of 26. By that time he had been shaping the world’s future for the better for a decade and a half. By the age of 14, through W3c, the consortium that curates the World Wide Web, he was offering advice to Tim Berners-Lee on particular difficulties with the semantic web, part of the underlying code of the Web.
It strikes us as a remarkable story. But, as the Electronic Frontier Foundation’s Danny O’Brien commented at Swartz’s memorial, it shouldn’t. “Aaron himself wasn’t the exceptional part of this,” he said. “The exceptional part of this was an institution that allowed someone like Aaron to walk in through its door and before anyone had noticed where he came from or what age he was or what his background was they allowed him to start contributing good work and learning from his peers. An institution is not truly open until somebody you could never even imagine exists walks through the door.”
That is what we are calling for. A world that is open in this way. When asked about his early years, Aaron Swartz said, “At first I was worried about revealing my age, but now I let my words speak for themselves.” That is the world we want to build. A world in which our words are allowed to speak for themselves. Institutions where anyone can walk through the door and contribute according to the quality of their ideas. A research environment where the eligibility criteria that open the door to the means to take brilliant thoughts from inside people’s heads and improve our world with them ask for one qualification and one qualification alone — have you got an idea that could change the world?
There are too many parts of society shut out from that most human task of all — shaping our future in a way that is better for all of us collectively because it works for each of those groups severally. And it is essential that between us we remove all of the barriers to each of those groups. But the focus here is on one specific group, and its specific needs, because pluralism works best for us all when such specifics are articulated and not blended together into some attempt at homogeneity that serves no one very well.
Like so many important questions, it is both incredibly simple and incredibly hard, all the more so because it is a question that is asked not so much as to solicit answers on a piece of paper or a computer screen but answers lived out in thousands of lives, answers that will need to redesign structures that we too often consider fixed and unchangeable.
But these are questions we must ask, and answers we (the “we” in both of these cases running far beyond the small group dedicated to thinking about them and contributing such a small part here) must find.
· We must remove the barriers faced by the mentally different because allowing all people the same opportunity to flourish through talent and toil alone, without first and constantly having also to break through barriers of society’s making is a good in itself.
· We must do so because the world that will lead, the decisions that result, the journeys that begin and the paths that are laid down will be more diverse, and study after study tells us that such diversity leads to better decisions, better journeys, better paths.
· And we must do so because in the decades to come we will, as a species, face challenges for which we will need decisions, and journeys, and paths so brilliant we can only begin to hope to achieve them if we harness every available mind we have, whatever wiring lies within it.
There are so many of us here, with so many unique insights and perspectives and talents. We want to be a part of this collective endeavour, and what a part we have the potential to be. And yet, at present, we can contribute just a fraction of what we might if the obstacles we face were torn down.
Call for Action
This green paper is a call to explore what those obstacles are, how they can be dismantled, and why the case for doing so is overwhelming — for our good, for your good, and for the good of us all.
We must ask what form the barriers take, at what points in our lives and, if we are able to take the first steps on the path to innovation, at which point along that road we face them. We must ask where there are specific points of friction and what steps can be taken to smooth over each of those. What is outlined below is woefully incomplete, but I hope contains enough buds of ideas to enable a fuller exploration to blossom.
Starting Points for Discussion
Indirect barriers can be so complex that they begin to unravel into a dizzying frayed and tangled mess the moment you tug at them. Tracing causation all the way back to the moment your classmate got something because they were able to read a book you couldn’t might be impossible. And if we find the wellspring, sealing it off may prove to be a task beyond all of our collective efforts. But the search is still important, and there may well still prove to be battles we can win.
- How society decides which questions matter. Two main factors determine which questions are deemed to matter in a society — political expediency and platforms for research (availability of funding at one end and a pathway for the results of research to have a wider reach at the other).
— Political expediency, driven by short-term interests of politicians seeking not the truth or even consensus but power, and by an enforced selfishness that requires each member of the electorate to consider their own needs before any others because their future is just tenuous enough that if not protected it may collapse.
— What questions form the basis of research is partially determined by those same political motives, but also by an existing research framework that will, therefore, not by design but by not knowing any better, simply perpetuate itself. Anyone who is not part of the mix now will not be deemed to have anything to say that will allow them to become part of the mix in future, so if they want in they must work on other people’s questions.
- The lack of a distinct voice. Mental health is the subject of more discussion than ever before. Businesses are starting to realise the potential market we form, and organizations of all kinds are beginning to realise they cannot simply ignore us. And yet when solutions are sought they are sought on our behalf. Research is framed and then led on our behalf. When experts by experience are recruited, they are kept at arm’s length from the actual research being carried out for them, and when a voice is needed for the media, we repeatedly se the double act of the knowledgeable and benevolent neurotypical researcher explaining on behalf of the suitably grateful “sufferer”.
- A recruitment practice not fit for purpose. Underlying both of the above, and some of the direct barriers below is a system of terms of eligibility (for funding and for work and for study) that does not work for those of us with mental health conditions or neurodivergences. It is a system that relies on a progress from one step to the next, like the levels of a computer game. For anyone who steps off this conveyor belt at any point it becomes increasingly hard to get back on. And yet the mechanisms that enable progress are ones that do not fit with the way so many of us have to live.
— Many of us will have periods of absence from study.
— Many of us will face discrimination that means we are not given challenging tasks or opportunities for training.
— Many are trapped in a benefits system that insists that half of us do any work that becomes available, wasting our potential and removing all possibility of acquiring the skills we need, and that the other do nothing at all.
— And many of us are locked in a cycle on mental ill health and debt. So even in a society in which career change and retraining are increasingly popularised and encouraged, we are unable to participate. It is in this area more than any other that perhaps obvious opportunities present themselves, because the misunderstandings about the financial demands we face, the financial resources at or disposal, and the financial means needed to retrain or change direction that we face seem most liable to correction because they are so basic.
- A lack of ambition. Too much of the social and political response to mental health issues is the provision of a minimum kit that does little other than ease the consciences of those who can feel they have “done the best they could.” Accessibility is parsed solely as “making sure people can manage”, and if someone is in work, whatever that work may be, that is considered a success. This is clearly inadequate at every level.
Direct Barriers to Entry
There are three traditional routes to bringing your ideas to life. Each of them contains bottlenecks that comparatively reduce our ability to set out upon them.
- Investment in the form of venture capital, start-up funding, or business loans
- The relation between debt and mental health means that those with mental differences disproportionately have poor credit, and as a result both less access to loans and a more complex relationship with the financial sector as a whole.
- Where support may be available through non-profit or community initiatives, this is difficult to access in many ways — first, it is geographically dependent; second, the application processes can be even longer and more complex than for funding from regular sources; third, help is often given “in kind” and not financially — this can serve an incredibly valuable role for those for whom lack of skills or access to equipment is the barrier but there is no reason why there should be fewer people with mental health conditions who have the idea and the skills but lack the finance to bring it to life; and possibly most important they are often based in hubs that are inaccessible to those with social or sensory processing sensitivities, and which run on limited hours to meet the constraints of funding rather than the needs of a clientele less likely to be suited to a standard timetable than most.
- The application procedure itself, even when its terms of eligibility are not exclusionary, requires a level of executive function that may render it inaccessible — form filling ability is not a good indicator of entrepreneurial or creative ability (both because it is a separate skill and because it is one so easily outsourced) and is an inappropriate means of gatekeeping for empowerment schemes.
- Furthermore, many streams of funding rely upon the “pitch” format, which again has little relevance to the ability to deliver the realisation of the idea being pitched. The pitch often serves only to serve the needs of an investor with limited time and an understandable lack of technical expertise, but in doing so can be self-defeating by keeping the investor from appreciating the potential of potentially the most effective innovators.
- Investment in research from funding bodies
- Research investment, in a very circular fashion, is too often made available only to researchers. And research positions are made available not to those best able to carry out world-leading research but to those best able to demonstrate on paper that they can do so. This inevitably favours those able to follow a steady, continual trajectory; and often favours those who are able to make connections through traditional networking. Our prima facie contention is that qualifications should be just that — the things that best qualify a person to undertake a specific task, and certification of course completion is just one (not particularly effective) means of achieving this.
- Research funded by traditional research funding streams has, through those streams and through institutions that rely on certification as a selection criterion, a disproportionate access to the platforms that shape public debate and future research, thus creating a very narrow band of “important and possible to undertake” research, whose characteristics behave similarly to politics’ Overton window (which defines those areas in which it is acceptable to have a political discussion, and which often requires a seismic event to shift, such as the effect automation will have on the discussion of employment in the next 20 years). This means that those with truly innovative ideas face not just the barrier of funding mechanisms but the barrier of a discourse that is set up against them.
- Do it yourself, using free resources openly available
- Those whose lives are consumed with meeting basic needs owing financial hardship (which disproportionately applies to those with mental health conditions and the neurodivergent) will have the least time of all to use “freely available” tools as research into the effects of scarcity have demonstrated.
- Freely available tools are often publicly located (for example in hubs, centres, and libraries) making them inaccessible for those with sensory, social, or scheduling issues.
Conclusion — Action Requested
We would like to hear from anyone who has had at any stage ideas they believe would have made the world a better place but has been unable — because of barriers resulting from a mental health condition or neurodivergence — to access the means to bring those ideas to life. If the barriers you have faced are already covered here, please feel free still to mention them, and likewise feel free to open up the conversation in ways that this brief piece does not even begin to explore. Comment here, use the #unlockeverything hashtag on twitter, or email firstname.lastname@example.org to take part in the conversation.
This discussion paper is part of the broader work I am doing on innovation in relation to Mycelium, a tool I am developing to prime our brains to be more creative (you can read more details at https://rogueinterrobang.com/mycelium/). Mycelium is a simple card game that combines memory techniques from the middle ages and neuroscientific research into creativity, and was the winner of the 2017 Oxford University Humanities Innovation Challenge. Its development is being supported by Oxford University Innovation. Part of the overall aim of the project is to use this particular innovation to open doors for people by giving them crucial skills, and to use the techniques developed by using Mycelium to open doors to people for whom they have traditionally been closed so that they can participate in creating a better future through innovation. As part of this, I am opening discussion groups, taking part in hackathons, creating a community that is based around inclusive innovation and access to the means to be innovative but also working on using innovative ways to identify and then overcome specific barriers.
I have bipolar disorder, as a result of which I have found myself, following a breakdown during my doctorate, working in an administrative job that is very much out of synch with my skills. As a result, I have consistently found the doors to research funding have been closed to me. The Oxford University Humanities Innovation Challenge provided a unique opportunity, as its terms of eligibility did not limit participation to academic staff. I hope that winning the Challenge is the first step in using my own ideas as a “proof of concept” that important research, innovative ways of seeing the world, and significant contributions to a better future can come from places where society, and more importantly those who purport to want to promote these things, would not currently look for them.