Joint declaration on mainstreaming RRI across Horizon Europe

Joint declaration on mainstreaming RRI across Horizon Europe

By SalM on May 25, 2020 in RRING NEWS

The Journal of Responsible Innovation has just published our paper “Joint declaration on mainstreaming RRI across Horizon Europe”, advising the European Commission to make Responsible Research and Innovation (RRI) key objective in FP9 (in Horizon Europe).

ABSTRACT

Leading RRI researchers and practitioners, together with policymakers and stakeholder organisations, discussed the state-of-the-art and future perspectives for RRI at the ‘Pathways to Transformation’ conference in June 2019, an event which was extended beyond Brussels, for instance by ca. 330 original tweets and ca. 840 retweets from ca. 160 unique accounts. In the conference, many participants expressed their concern about an uncertain future for RRI in the EC. As a result, numerous large-scale EU-funded RRI projects signed a Joint Declaration, urging the European Commission to make RRI a key objective of the upcoming framework programme, Horizon Europe – a plea to both mainstream the approach across the programme and provide specific resources for strengthening the RRI knowledge base. As the Horizon Europe programme is being forged, it is timely to present the Declaration for a broader audience.

KEYWORDS: RRI, responsible research, mainstreaming, science policy, Horizon Europe, science with and for society

1The future of responsible research and innovation (RRI) in ‘Horizon Europe’

The continued relevance of RRI

Responsible Research and Innovation (RRI) is the on-going process of aligning research and innovation to societal values, needs and expectations. With the early political adoption of RRI, the European Union has been a pioneer in responding to the issues at stake; most prominently the need for public legitimacy and support for research and innovation actions that address real societal needs in a way that respects the values of European publics. Throughout the last three European framework programmes, and most importantly in the Science-with-and-for-Society (SwafS) programme, ground-breaking conceptual and practical work on RRI has been achieved. Remarkable change processes have been initiated; signalling a potential deeper institutionalisation of RRI principles and practices into organisations and national level policies.

We, the signatories to this Declaration, see the value of the RRI concept continuing to unfold best in the future when a top-down political approach is wisely operationalised into criteria for funding under the next European framework programme Horizon Europe, and when this approach is combined with further nurturing of the individual capacities of us all, the actors in research and innovation, in order to better address societal concerns regarding research and innovation. The European Union is the right actor to take a leading position in responsibility in research and innovation as the EU has been built on values from the very beginning and its success – now more than ever – depends on how it can deliver on its core values such as well-being, social coherence and sustainability. Previous initiatives, such as the Rome Declaration on Responsible Research and Innovation in Europe, have highlighted the importance of RRI. Such initiatives have not lost any of their urgency, which is why we, the signatories to this Declaration, call for immediate action.

The threat of dilution of RRI in Horizon Europe

Institutional change is slow and requires dedication and nurturing, along with continued funding. The progress that has been achieved is now under threat in the impending Horizon Europe framework programme, which does not foresee a follow-up to SwafS. RRI still figures in the important basic political discussions in the regulation for Horizon Europe and will likely still have a place in the programme. However, its implementation in future EC R&I policy remains uncertain. At this time, when institutional change actions are starting to gain momentum, a dilution of the RRI agenda would work against reaping the benefits of the large investments – rightly – made.

Our call: make RRI a substantial and living element of Horizon Europe

Responsible Europe should strengthen its efforts to focus on responsible and sustainable modes of research and innovation. We, therefore, call on European Institutions, EU Member States and their R&I Funding and Performing Organisations, business and civil society to continue to make Responsible Research and Innovation a central objective, with appropriate budgets, across all relevant policies and activities. We also call on such institutions to continue to support the democratisation of research and innovation ecosystems, fostering more responsive and inclusive modes of knowledge production and diffusion.

Our active contribution: working jointly for infrastructure for RRI

The signatories to this Declaration are ready to assist in creating a more inclusive, open and responsive culture of research and innovation through, among other actions, implementing RRI in Horizon Europe; being the allies of policy actors, including DG RTD staff, in the embedding of RRI. As a community, we want to actively push forward a self-organised hub and learning platform, ideally with support for this endeavour from the EC. If RRI related actions are mainstreamed in Horizon Europe, it is crucial that such mainstreaming is done with a view to high quality and not just included as a tick-box activity.

Advice to the European Commission regarding embedding of RRI in Horizon Europe

  1. In cases in which RRI or RRI related concepts are included in research and innovation actions, applicants in these programmes/calls should be asked to outline how their projects relate to RRI, based on guidelines for how to embed RRI effectively and how to measure societal impact. The proper inclusion of RRI actions must involve specified tasks, deliverables, milestones and budgets in order to be convincing. If the described RRI actions are not designed systematically, this should affect the overall evaluation significantly. Criteria for assessing this, both in the proposal and in subsequent delivery, should be communicated to applicants, evaluators and reviewers.

  2. Interdisciplinary collaboration should be encouraged. Including researchers from Social Sciences and Humanities (SSH) can increase the quality of RRI actions, such as citizen engagement or ethical deliberation. Including other initiatives and organisations (e.g. TA and NGOs) can also have an important function in making projects more transdisciplinary.

  3. Treat RRI measures in integrated projects as research (e.g. stakeholder engagement, citizen science, co-creation), based on an understanding of how such actions can be done well, and the methods and results of RRI actions should be published. Only in this way can continuous further development, quality improvement and learning effects be achieved.

  4. Projects should consider integrating all aspects of RRI; simply picking one aspect (e.g. research integrity) is to fragment RRI. Instead, when applying, for instance, citizen science in an integrated project this should be done in a reflective, inclusive and open way.

  5. It must be clear that citizen science, open science and co-creation are aspects of RRI, but responsibility in research and innovation also includes being anticipatory, inclusive, reflexive and responsive, and includes considerations of fairness (social, gender, etc.) and sustainability. Funding calls that include RRI, should be informed by evidence from past research. Specific guidelines to include open science, citizen science and co-creation activities in Horizon Europe should be related to RRI.

  6. A hub on RRI should be funded by the EC in order to ensure the quality in its mainstreaming, co-creation, public engagement and citizen science. This hub should build on and further cultivate the RRI knowledge base. It should advise, train, consult, assess and provide quality control and be a resource for those who include RRI-related activities in Horizon Europe. It should also provide experts for the assessment of these aspects of proposals and project activities, and for relevant committees and boards.

  7. The different advisory boards and committees in Horizon Europe, especially in relation to emerging science and technologies, as well as the mission-oriented programmes, should include competence in RRI, or at least transdisciplinary competence (including civil society representatives). In the further operationalisation of Horizon Europe’s mission-oriented approach, RRI should be viewed as integral.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes on contributorProfessor Alexander Gerber is Programme Director for Science Communication at Germany’s international Rhine-Waal University, and Research Director of the extramural Institute for Science and Innovation Communication (inscico). Before returning to academia, the scientific entrepreneur was the founder and editor-in-chief of InnoVisions Magazine, and Head of Marketing & Communications at Fraunhofer (ICT) for seven years. Professor Gerber is an information scientist by training. The spectrum of his research crosses what is often seen as the divide between scholarship and practice, working towards science communication as an agent of social innovation and social justice. The vision: science and innovation co-producing knowledge with their stakeholders, in a responsible, inclusive and sustainable way. This work is guided by a trans-cultural, comparative approach, focusing on the global diversity of challenges and solutions. As of March 2020, this work includes work package leadership in four EU Horizon 2020 projects. Together with other international partners, he has been running Europe’s largest Summer School for Science Communication since 2016. Professor Gerber is an elected member of the Scientific Committee of PCST, the World Association of Science Communication. He also serves on several Advisory Boards, and as an elected member of the Governing Board of EuroScience and its ESOF Supervisory Board since 2010.

Notes

1 https://ec.europa.eu/programmes/horizon2020/en/h2020-section/responsible-research-innovation

    Additional information

    Funding

    This work was funded by the European Commission (formerly, H2020 Science with and for Society Programme), through the projects NUCLEUS (grant no 664932), RRI-Practice (grant no 709637), D-NOSES (grant no 789315), Fit4RRI (grant no 741477), GRRIP (grant no 820283), HeiRRI (grant no 666004), NewHoRRIzon (grant no 741402), PROSO (grant no 665947), ResAgora (grant no 321427), RRING (grant no 788503), Super-MoRRI (grant no 824671), TeRRIFICA (grant no 824489).

    Source: The Journal of Responsible Innovation

    Edurne Inigo

    Edurne Inigo

    By SalM on May 21, 2020 in Women in Research

    I am a postdoc researcher at Wageningen University (The Netherlands) and one of the women in the RRI project. I am currently co-responsible for the RRING Work Package 5, in which we examine the relationship between RRI and competitive advantage. What we want to find out is whether RRI may be a driver of competitive advantage, or maybe a barrier, in different areas of the world. We are looking at the linkages for RRI worldwide; therefore, we look at the 5 geographical areas defined by UNESCO that are the focus of the project RRING; that is, Africa, the Arab States, Asia and the Pacific, Europe and North America, and Latin America and the Caribbean.

    There are three distinct phases within this work package. The first phase is mostly exploratory and consists of a theoretical part and an empirical part. To start with, we will examine both academic literature and policy, managerial and European project documents that can help to shed light on the relationship between RRI and competitive advantage. This is a particularly challenging task in those geographical areas where the term RRI has not been very widely utilized. Therefore, we also look for proxies that are consistent with a global understanding of RRI. This is relevant for the next phases of the work package, where we will look at RRI and competitive advantage in practice. As part of this exploratory exercise, we will also conduct interviews with experts in RRI and competitive advantage, and we will perform a survey. The next phase of the project in this Work Package builds on the review and develops indicators that can be used to help businesses policymakers – and potentially other stakeholders – in their evaluation of RRI and competitive advantage. At the moment, it is difficult to assess the business case for RRI, and by looking at proxies for RRI we aim to develop usable indicators that are valid globally. In the third phase of the Work Package we are going to go back to businesses and policymakers, to work with them in two different tasks:  evaluating the usefulness of the developed indicators, and carrying out case studies that will help us to understand whether and how RRI and competitive advantage are intertwined. Based on all this data, Work Package 5 will provide reports for different stakeholders on the relationship of RRI and competitive advantage.

    Beyond RRING, I am interested in the inclusion of sustainability and socio-ethical goals in the innovation process, and how the whole system surrounding businesses affects the development of the firm’s innovation activities in one way or another. The main reason why I do what I do is my will to contribute to sustainability. And as noted by New Zealand’s former primer minister Helen Clark, “any serious shift towards more sustainable societies has to include gender equality”.

    Thus, I stand with my peers and allies in those areas where I can have the greatest impact: visibility of women researchers, equal education for girls worldwide and social and economic equality for women everywhere. Because gender equal societies are more prosperous and more sustainable societies.

    If you want to know more about me, you may follow me on Twitter or visit my LinkedIn profile.

    Kutoma Wakunuma (PhD)

    Kutoma Wakunuma (PhD)

    By SalM on May 21, 2020 in Women in Research

    I am a Senior Lecturer and Researcher at De Montfort University where I work within the Centre for Computing and Social Responsibility (CCSR). I hold a PhD in Information and Communication Technologies for Development and Gender. My research interests are around understanding the impact of ICTs on modern society spanning both the developed and developing world. This is in addition to interests around ethics of technologies, gender in ICTs, Responsible Research and Innovation (RRI) and Civil Society Organisation research. My interests are reflected in a number of projects including EU projects I have worked on and continue to work on. The EU projects include ETICA (Ethical Issues of Emerging ICT Applications); CONSIDER (Civil Society Organisations in Designing Research); Network Analysis of Civil Society Organisations Participation in Research Framework Programmes and SATORI (Stakeholders Acting Together On the ethical impact assessment of Research and Innovation) to name a few. I have taken on several roles on these including being part of the coordination team and WP leader. For example, I was lead evaluator on the Evaluation WP of the SATORI project. I was also Principal Evaluator on the EU funded project Hypatia where I evaluated the projects gender-related aspects particularly concerning the involvement of boys and girls in Science, Technology, Engineering and Mathematics (STEM) subjects.

    In addition to all the exciting work outlined above, I am also a Senior Lecturer teaching on postgraduate and undergraduate courses, which include RRI in ICT, ICT for Development, Computing Ethics as well as Research, Ethics and Professionalism. I also serve as a module leader on a number of the modules I teach. In addition, I am programme leader for the MSc Computing programme. I also supervise PhD students and have a couple of successful completions to my name.

    My other activities involve being a journal reviewer on a number of journals. I also act as a European Commission evaluator and ethics expert.

    I am currently DMU lead on the RRING project where we are contributing to a number of WPs. The WPs include Global State of the Art of RRI by key geographies; Global comparative analysis of State of the Art; Development of Competitive advantages of RRI; Aligning RRI with SDGs and high-level RRI strategies and the Establishment of a perpetual global RRI network. I am especially excited about the potential of understanding the state of the art of RRI in different geographical regions, which include Africa, the Arab States, Asia and the Pacific, Europe and North America, and Latin America and the Caribbean. This is particularly important, as it will give us insight into how RRI is understood in other regions outside of Europe.

    I think the RRING project is really exciting not only in its reach of different geographical regions as it tries to understand the concept of RRI beyond Europe but also in its contribution to the UN’s SDGs as it aims to align RRI to the SDGs. In particular, I am very happy with its focus on gender, which is something very important to me.

    Having a gender committee and a number of women in leading roles on the project is especially encouraging and something to be proud of as a member of the project. It highlights the important contributions women like myself can and do make in research. With this, I am hopeful that various other projects can take a leaf out of the RRING project and involve more women in strategic roles and in research as a whole. If you want to know more about me and the work I do, you can follow me on Twitter: @KWakunuma or visit my Linkedin profile. You can also visit my google scholar citation profile or visit my university home page.

    Simge Davulcu

    Simge Davulcu

    By SalM on May 21, 2020 in Women in Research

    Simge Davulcu, Assistant Professor of Organic Chemistry, RRING researcher.

    Simge is a young scientist from Cyprus. She has a PhD in Chemistry from the University of Bath. Recently she completed a Post-doc with Prof. Andrea Procheddu in the development of mechano-chemical methodologies for catalytic organic reactions at the University of Cagliari in Sardinia.

    She is currently the Head of Basic Pharmaceutical Sciences at the Department of Pharmacy at Girne American University. Her research interests are developing novel, atom-efficient catalytic processes for the formation of C-N bonds in pharmaceutically important molecules. She is also a teaching fellow in Organic Chemistry to Pharmacy undergraduate students.

    She is an enthusiast in RRI and its applications in research, has a particular interest in STEM Outreach, public engagement and capacity building. She is the winner of the Science Diplomacy Project Award by UNESCO at the World Science Forum 2016 and the founder of Science for Peace Initiative Cyprus. She is the Junior Co-Chair of ICORSA and a researcher in RRING WP7. She supports WP7 in the State of the Art of existing Networks and network evaluation.

    Emma Day

    Emma Day

    By SalM on May 21, 2020 in Women in Research

    Emma Day, Programme Manager at Vitae.

    I have worked for Vitae, as a passionate supporter of researcher development for over 15 years in a variety of project management and training and development roles, both in the UK and Europe.  I am one of Vitae’s most experienced project managers with a particular interest in researcher career development and fulfilment, intersectoral mobility and equality and diversity, particularly gender.

    I believe that the RRING project is extremely exciting and timely as it tackles a number of issues central to much of Vitae’s work around developing researchers to maximise their potential and address the barriers to both successful researchers and research that we see today particularly around the divide between the academic and non-academic world.  Collaboration and openness will be so important to overall society development and wellbeing in the future.

    My most recent project was as co-ordinator of a EURAXESS programme which highlighted the barriers of academic intersectoral mobility demonstrating that this still needs to be tackled on a large scale by both academia and business in order to ensure that researchers are able to fulfil their potential and achieve their best work.  This can be done through better public engagement and heightened public understanding of its importance through science education.  For too long there has been a wider lack of understanding about what researchers do.

    On a personal note, I am passionate about gender issues and opportunities and as a working mother working in an academic environment, I am more than aware of some of the challenges entrenched in this area and the barriers needed to successfully overcome them.  I have developed resources for gender and wider equality and diversity training for academics and I am keen to see this area develop, it is exciting to work on a project which will look to draw together expertise on this.

    The global scale of this project will create a network that will move the RRI agenda forwards for all researchers and develop something that has long term relevance and sustainability.  I am really looking forward to playing my part.

    Monica Racovita

    Monica Racovita

    By SalM on May 21, 2020 in Women in Research

    I am working as a post-doctoral fellow at the Global Sustainability Institute, Anglia Ruskin University in Cambridge, UK. I am co-responsible for the task 3.3 of the Work Package 3 in RRING. This task coordinates over 180 interviews in approximately 20 countries around the world, as well as a global survey in 8 languages. The purpose of this task is to gain a better understanding of RRI in different contexts as well as gain information on RRI-like structures: policies and regulations; roles and interaction of different stakeholders; platforms, networks and spaces. I am very much looking forward to the results of this task as there is not much groundwork done currently on a global framework for RRI.

    My work generally draws insights from the STS field (Science and Technology Studies), which studies the interactions between scientific research and technological innovation on one side, and society, politics, and culture on another. As many researchers in this field, I have a mixed academic background: I have a PhD in Global Social Studies from Doshisha University, Kyoto, Japan and a master in Applied Chemistry and Biotechnology from Nagoya University, Japan.

    In terms of research interests, for the past 8 years I have worked on issues related to biotechnology, Responsible Research and Innovation, sustainability, and international development. Thus I have worked on projects funded by the EU (FP7 or Horizon 2020), Bill and Melinda Gates Foundation, or UNEP on: co-RRI and fostering transitions towards RRI systems; biosafety capacity-building for genetically modified organisms (GMO) in Sub-Saharan Africa and the Caribbean; stakeholder engagement for the assessment of food and feed safety of genetically modified plants in the EU; preparatory steps towards a GMO research ERA-Net (European Commission co-fund action designed to support public-public partnerships).

    I have also led a systematic review on the non-food health impacts of genetically modified crops cultivation and co-coordinated a task in the EU-funded G-TwYST project investigating the role of values in scientific controversies.

    Although gender has not been a focus of my research, my mixed academic background and my subsequent work in STS have given me direct exposure to various gender issues in academia (in STEM and social sciences) in various cultural contexts (Romania, Japan, Italy, Austria, UK). I am happy to have found that RRING places a particular focus on gender and I am hopeful that it will manage to go beyond a tokenistic approach and become an example of how gender should be addressed in EU funded projects and within RRI approaches to research and innovation.

    Tharwh Qutaish

    Tharwh Qutaish

    By SalM on May 21, 2020 in Women in Research

    Eng. Tharwh Qutaish has 20+ years of experience in Integrated Water Resources Management with a focus on water, sanitation and hygiene management projects that includes strategic planning and contribution in designing national master plans. Eng. Qutaish gained her working experience in the water and wastewater sector, including extensive experience in planning, strategy development and consulting, as well as supervision and capacity development of employees in the water and wastewater context, water quality,  disaster risk reduction, governance and resilience; strategic planning and institutional development; science communication and knowledge management, policy development and advocacy. Eng. Qutaish has proven experience in project management and team leading expertise; including. communication, conflict management, staff development, time management and negotiations/contract management and developed corporate communication strategies as well as reporting tools. Eng. Qutaish is fluent in Arabic and English. Watch her here.

    Tharwh Qutaish is part of Royal Scientific Society, the project’s regional partner in Jordan for WP 3.

    Miriam Rubio

    Miriam Rubio

    By SalM on May 21, 2020 in Women in Research

    Industrial Engineer for 24 years, current occupation: Industrial Engineer for 24 years, Professor at the School of Industrial Mechanics, School of Engineering at the University of San Carlos, Mentor at Project # TALA / Secretary of State of the Government of the United States United of America, for North Triangle and Mexico in use of Tic’s and programs for rural HUBS. Senior Advisor International in: Innovation, education, social-economic development for innovation, entrepreneurship, sustainable development, strategies and public policies. I currently participate in a RRING project, in the European Union, with support from the HORIZON 2020 program, which is very important for the lines that are being worked on, which include the theme of gender and science; which is a great experience for my development as an engineering professional. Lecturer at International Seminar and Meetings is on topics of Science, Technology, Innovation, Entrepreneurship, Orange Economy, Higher Education. Co-organizer of SPACE APP CHALLENGE/NASA-GUATEMALA. Business consultant and cooperation in the private sector, Directory of the Orange Economy and Creative Industries for the SICA Region, Argentina and Mexico. Guest Content Expert in the LEARN MORE of CUAED / UNAM-Mexico program (Coordinator of Open University and Distance Education). ISOC (INTERNET SOCIETY), chapter member in Latin America from 2017 to date. Researcher and consultant Strategies for Electronic Government and Open Government since 2012. Executive institutional management projects General Secretariat of the University of San Carlos of Guatemala; making the implementation and monitoring of projects for college at national and international monitoring in various areas which include: Social Entrepreneurship, Inclusion, Science, Technology and Innovation Centers access to information from more than 10 years ago; Education to Distance and topics on gender and youth, as well as being the liaison as an advisor for international cooperation with international organizations and friendly countries. Senior Advisor on issues of e-government, education, innovation, support to non-governmental organizations, private sector.

    I served as the National Secretariat of Science and Technology of Guatemala (CONCYT-SENACYT), elected in a national selection process. Vice-president of the MOST-UNESCO General Committee, I was President of the MOST-GUATEMALA committee; Vice Gender and Technology and the Vice President of Electronic Commerce in ECLAC, occupy the Permanent Secretariat for the Forum CTCAP / SICA, head of the delegation of Guatemala wing UNESCO Summit in Paris, I directed the organization of annual international STI congresses, as well as the 1st. E-commerce at the international level, programming of the OAS Ministerial Summit, in Guatemala, the MOST-UNESCO regional school, Representative before the OAS Climate Change Committee, the signatory of the agreement for the creation of the Women’s Cabinet in Guatemala, for social inclusion issues based on the use of Science and Technology. Coordinator of technology support unit belonging to the Faculty of Engineering of the USAC (University of San Carlos of Guatemala), I have promoted and designed program s higher education in virtual mode for USAC; strategies to establish a network of telecenters across the country for projects of educational, social and economic development to reduce the digital divide and improve the quality of life of the population in rural areas, this jointly university with all economic sectors and productive of Guatemala and the government, through the use of technology and e-government. I prepared a draft Law on Public Safety dad Industrial, delivered to the Social Security Commission of the Congress of the Re of Guatemala public, in INTECAP (TECHNICAL TRAINING INSTITUTE) as instructor training and technical advice in companies on various issues such as: Marketing, Decision Making, Strategic Planning, Industrial Safety and Hygiene, etc., everything related to industry and administration.

    In my performance in teaching, I taught courses, guide and supervise the practice of students closure career in business, in the professional area of the Faculty of Engineering of the USAC, in the areas of production, Statistics courses applied In the University Rafael Landívar, in the Faculty of Economics and in the faculty of Engineering. In addition to belonging to the planning committee of the School of Industrial Mechanics in the faculty of Engineering of the USAC, in the process with the entity of accreditation for university programs of Engineering ACAAI, endorsed by the Central American University Higher Council (CSUCA), in addition to being responsible for the certification project in ISO standards of the procedures of said school, as well as the technology center in the same faculty, Auditor certified in ISO standards.

    Miriam Patricia Rubio Contreras

    Email: miriamrubioc2411@gmail.com

    Miriam is working for the University of San Carlos. She is RRING’s partner in Guatemala, conducting interviews for WP 3.

    Let COVID-19 expand awareness of disability tech

    Let COVID-19 expand awareness of disability tech

    By SalM on May 19, 2020 in COVID-19

    The pandemic’s disruption shows how much academia could learn from the disability community.

    Disabled people including myself have long campaigned for accommodations to help us live our lives. The COVID-19 pandemic shows that these are not as impractical as we have always been told. Supermarkets, restaurants and pharmacies (even outside cities) can deliver; remote working, medicine and education are possible for many; and social lives can be rewarding without requiring us to leave home.

    All around me, I see academic colleagues adopting disability-led hacks and long-sought accommodations. I wish everyone had thought about these workarounds — and about disabled people at all — earlier. When lockdowns end, we must not forget these lessons, not least because the pandemic will disable people, and the impacts will be felt most by the most vulnerable parts of society.

    Academia is paying for its ableism. At many universities, in-person research with human participants and in laboratories has been curtailed. If these projects had considered disabilities, they might be better off: disabled academics already plan in short increments, with built-in flexibility.

    In 2014, I returned to my job as an assistant professor, newly multiply-disabled — a hard-of-hearing amputee battered by chemotherapy and more. I felt out of place. I could no longer access many spaces, including most of my colleagues’ offices, and I sought the camaraderie of other disabled faculty members, staff and students. My disabled comrades and I recognize the diversity of disabilities: congenital and acquired; ranging from cognitive to sensory, mobility and more; apparent and not. Many of us pursue research that emphasizes how disabled people are the best experts on the technologies and structures that meet our needs.

    One of my projects examines accounts of disabled people’s lived experiences with technologies, and how they differ from those of the scientists and engineers behind the tech. I planned my work intending to recruit disabled students among my researchers. Most of the studies can be done remotely, even from bed, and on a funky, asynchronous timetable as needed. Last year, when I had lung surgery, my group shifted gears without worry. And because of its disability-led design, my team’s project is pandemic-proof.

    Another project, to gauge the experiences of students in civil-engineering classes, was designed to include participants with a range of disabilities. So we obtained approval for flexibility in communication format: we conduct our interviews by text, e-mail, Zoom and other means. Because we planned for disabled people to lead and participate in the research, we’re well prepared for the current situation — or for any other.

    Many disabled people are also adept at managing our energy, and forgiving ourselves for not always meeting conventional metrics of ‘productivity’. My non-disabled colleagues are now struggling to adjust, but my team appreciates that ‘clocks should bend to our bodies’, not the other way around. Some disabled people call this concept Crip Time, reclaiming a derogatory term in pride (much like ‘queer’ for many LGBT+ people).

    The disability community creates and lobbies for technologies and infrastructure that work better for all. Deaf and disabled people fought hard for things such as captioning on television, which has since become ubiquitous in sports bars and airports and can now be appreciated by people streaming media while those they live with rest or work.

    The bitter irony is that, at the moment when non-disabled — or not-yet-disabled — people are beginning to normalize these disability hacks and hard-won infrastructure, society’s disregard for disabled people is clear. We are dying of COVID-19 in greater numbers than are non-disabled people, in rehabilitation facilities, state institutions (including prisons), group homes and care homes.

    Many accommodations demanded under COVID-19 were implemented within weeks, including the ability to work from home, to have flexible schedules, to get what we need without excessive and demeaning documentation, to share and celebrate creative adaptation, to work with the knowledge that all schedules can change. These are all things that disabled and chronically ill people have wanted for a very long time. I hope that when we’ve flattened the curve and saved as many people as possible, we don’t return to a world in which disabled people are ignored (especially when COVID-19 will probably produce more of us).

    So start making changes that should have been standard all along. Plan creatively and accessibly to allow more work offsite, and to include people whose clocks aren’t steady. Welcome suggestions from disabled colleagues and students about how to make the environment work best for their neurotype and schedule. Be ready to take criticism: too often, work is set up as dictated by convention, rather than by calling on relevant experiences and possibility.

    Make your teaching and scholarly materials multi-modal: produce formats that work for people with different physical conditions and ways of reading and communicating, sharing and contributing. Think about multiple ways to allow participation in your funding, reviewing, research and engagement. Let’s see an end to patronizing objectification and assumptions about what we want and need: include disabled people in boards, teams and studies, and learn from us. We have had to become masters of invention. The pandemic has made the value of that clearer than ever.

    Author: Ashley Shew

    Source: Nature.com

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