I Don’t Bend to Anyone
Rheumatoid arthritis (RA) occurs in approximately 1% of the population (Slovenia has an estimated 20,000 patients with the disease). It is a long-term autoimmune disease that initially affects the joints. If it is not treated, irreversible joint damage develops, disability occurs and, indirectly, mortality increases. With the aim of raising awareness about the disease, its symptoms, patient problems and their possible solutions, the participants of the creative camp on service and information design, ‘Designing an Agenda, or, How to Avoid Solving Problems That Aren’t’ developed a conceptual draft for the ‘Mastering Art(hritis)’ online self-help forum and awareness T-shirts.
The participants of the creative camp, which was held in April 2013, identified the critical problems associated with the disease to be:
- A lack of familiarity with the disease
- Late diagnosis, which adversely affects the results of therapy
- A lack of individual patient care
- A lack of understanding in people that come into contact with those suffering, which causes patients psychological effects
Patients with rheumatoid arthritis are difficult to identify since they appear young and healthy at first glance. It is precisely not recognising the illness that often places RA patients in an awkward position in everyday situations, since they are expected to help others who appear less able (for example, helping an old lady to pick something up from the floor). Not only are these situations unpleasant, but they can also have psychological effects for rheumatics who aspire to maintain their independence as long as possible and take care of themselves. Independence is of utmost importance to them. Although many difficulties in performing everyday tasks can be solved by using existing devices, these are often poorly designed and stigmatize the user. Patients are also not adequately informed about the options for purchasing equipment, and in addition, there is a lack of service provision for people with arthritis in Slovenia. As a result, both doctors as well as designers and the general public are ill-informed about possible solutions to the problems associated with the disease.
The website Mastering the Art(hritis) creates a space where patients with RA can help other people
with the disease through the exchange of information about their ways of coping with the disease in everyday situations. It presents the basic facts about the disease, patients’ personal stories, DIY solutions, as well as other useful content.
The T-shirts to raise awareness featuring slogans (e.g. ‘I bow to no-one’ or ‘I’m never tight’) pass on messages about the problems of the disease in a fun and humorous way. They are intended primarily to raise the awareness of the general public.
The creative camp on service and information design “Designing an Agenda, or, How to Avoid Solving Problems That Aren’t” took place in April 2013 and was organized by the Regional Development Agency of the Ljubljana Urban Region (RRA LUR) and the Pekinpah Association. The development of the concept I Bow to No-oneis fully described in the book Designing an Agenda, or, How to Avoid Solving Problems That Aren’t.