Patients who become designers, designers who collaborate on an equal basis with doctors, disabled patients and volunteers. The stories of people who look ahead while working for those who risk being left behind

"Fragility is the true condition of existence. Man is not called to bond with others or the environment, because he is already linked to it, ontologically ". Thirteen years have passed since Argentine philosopher Miguel Benasayag wrote this consideration in the essay Fragility, yet  it took a pandemic to overturn the common perception of a world divided into able and less able, strong and weak, all sinking into the same pit of uncertainty.

With the health and social emergency becoming the rule, a relatively new world rises to the surface in the universe of design. One in which all stakeholder make the difference. A world where skills and languages ​​come together outside the authorial comfort zone of classic design, with the aim of making the lives of sick and disabled people easier and above all more enjoyable.

This is community-driven world, in which expertise, different professionalisms and mutual respect are the common thread of those who play a part in it. And where designers sit at the same table as doctors and therapists. Or work as makers who hack prostheses and prams for paraplegics. Or they are even patients themselves: disabled entrepreneurs who design fashionable wheelchairs, former cancer patients who envisage and prototype tools to make aseptic rooms in a hospital more functional and attractive. Or, again, doctors who in those hospitals have learned to design tools for assisting people with mobility problems, making the most of the digital printing laboratories that many healthcare facilities in Italy already have.

"Behind what we call codesign, there is an iron pact", explains Enrico Bassi of OpenDot, one of the most active studios in Italy in participatory design for the fragile world.

"On the one hand, there is the designer with his ability to design which is above all the ability to abstraction. On the other hand, there are therapists and patients with their requests and their language. When each of these parties takes a step back, agreeing to meet the other on common ground, the results arrive and can teach school". Collaborations were born from this experience, such as those between OpenDot and the Milanese foundation Together to Go, which deals with the rehabilitation of neurologic children. And projects like TOP! Together to play, a suite of video games that use eye tracking to give children with disabilities an opportunity for recreation and at the same time to store data to help evaluate the effectiveness of the therapy.

Designed by DotdotdotFondazione TOGWeAreMuesliIstituto Mondino in Genova, PHuSeLab UniMi, the videogame suite offers rehabilitation and learning sessions based on games and interactive activities, made possible by the eye tracking system. Something that would hardly have seen the light without an integrated and collaborative system between designers, doctors, patients and volunteers. The truth, explains Enrico Bassi, is that it becomes difficult to design by yourself something that does not yet exist. “When working on unexplored land, it is better to do it with those who already inhabit that land. Design suffers from authorship, of protagonism, when instead the freshest and most innovative experiences come from the communities, as we saw in the hot days of the Covid emergency (on this read also here), when an appeal on social networks allowed a maker to create an effective prototype of a mask . The lesson of codesign is that the designer, in 2020, is someone who brings a project into the world and makes it grow with everyone's contribution ".

Project and life coincide in the (beautiful) story of Alissa Rees which begins in 2011, when this Dutch student in philosophy falls ill with leukemia and is hospitalized to undergo a delicate cord blood stem cell transplant. That experience, made up of pain and fear, but also of sterile and bare environments, of meals that are always the same and no contact with nature, marks it as it would have done with anyone else. Alissa comes out healed but tried to the point of deciding to change her dreams and professional ambitions. She abandons philosophy, embraces design and graduates from the Eindhoven Design Academy. Her first work is a pair of illustrated cards, one with the date of birth and the other with that of re-birth, or the transplant.

Alissa sends them to all the people who in one way or another were close to her in that period. "Not only my blood, my hair and my body had changed, but also my vision and my perspective." Then comes a series of products that, briefly, we could define as medical design, but which are actually a model of empathy (read more about this here) applied to the needs of patients and a way to reconceive the tools at the service of man in difficult conditions. Set of candle holders to warm the atmosphere near the hospital bed, infusions for infusions that can be worn through comfortable padded clothes that do not prevent the patient from moving.

In Danilo Ragona, life and project are also one. After an accident that put him on wheelchairs age 21, Danilo enrolled at the Istituto Europeo di Design and began the journey that will soon lead him to design folding prams that can be tucked into a backpack, with wheels suitable for sand and snow. customizable in eleven eleven colors and hundreds of different combinations.

Two years ago, Fragilitas, the exhibition within the Design Triennale in Liège, Reciprocity, curated by Giovanna Massoni, was an observatory and at the same time a sample of this brave and truly innovative world. A review that was an explicit invitation to reverse the perspective and to take fragility as a point of view on the world.

A precious international spotlight for Thomas Vancraeynest's prostheses in washable and recyclable materials, light and elegant, perfect for not denying sport to those who live with a handicap. Or for those of Oliveira Barata that are like fashion accessories and transform a health necessity in the way of expressing one's own style. Which is what Francesca Lanzavecchia had already done, transforming an orthopedic corset into a fashion garment. Or even the prototypes of wheelchairs by Reto Togni, the hacking experiments of the Howest University of Applied Sciences, a university in West Flanders, which modify industrial models of crutches, uncovering the hard-to-digest truth: that every disabled person is a story in itself, and therefore every person with a handicap requires a unique tool, pushing the frontier of customization beyond the limits known by the industry. And in fact, at Howest University they do not speak of a generic design for all, but of a more precise and tailored design for everyone, where each product is the result of the dialogue between the designer and those who will have to use it.

This amount of experiences, values and projects can lead to a series of results and goals that are truly capable of improving the lives of the most fragile people. First of all, it can facilitate the transition from the concept of care in the sense of medical therapy to care as assistance. And, secondly, on a more practical level, to push bureaucracy to foresee the presence of designers and planners in the staffing of health facilities, a completely unexplored frontier in Italy at the moment.

On the first of the two points, Nawal Bakouri, one of the curators of Fragilitas in Liège, observes: “There is the world of medicine, for which health is an objective in itself. But being well, not getting sick, is not a sufficient status: health serves to live and to carry out one's projects. In this sense, the contribution of design can be decisive: helping medicine to understand how to develop hybrid, unconventional objects that we make live well ".

As for the presence of designers in hospitals, Bassi of OpenDot observes: “Healthcare facilities could become manufacturing centers by exploiting the 3D printing machinery that some already have and which are often used only for diagnostics. In reality, there is already a generation of doctors who are rolling up their sleeves and, after targeted training, are able to produce supports and aids for the rehabilitation of neurolysis. It would be wonderful if design took these realities by the hand, accompanying them until they become autonomous ".

Because if it leaves someone behind, then it's not true design.


Cover photo: Concerto’ by Osanna Davi. The image was show during the lockdown and it portraits the fragility and integrity of dandelions in a perfect balance.