Innovation: calling on the expertise of people with disabilities as a way to co-create

In 2025, the French law of 11^th Feb­ru­ary 2005 will cel­e­brate its 20^th anniver­sary. This land­mark law recog­nised the rights of peo­ple with dis­abil­i­ties and pro­mot­ed a more inclu­sive soci­ety by impos­ing oblig­a­tions in terms of acces­si­bil­i­ty and com­bat­ing dis­crim­i­na­tion. It marked a major step for­ward by estab­lish­ing the prin­ci­ple of “access for all” in both pub­lic spaces and the world of work. How­ev­er, 20 years on, the expect­ed soci­etal trans­for­ma­tion has only been par­tial­ly achieved¹ and the inter­na­tion­al con­text is even rais­ing the risk of a back­lash against the goal of a more inclu­sive society.

One of the foun­da­tions of the trans­for­ma­tion demand­ed by peo­ple with dis­abil­i­ties and the organ­i­sa­tions that rep­re­sent them is par­tic­i­pa­tion. For “access for all” to become a real­i­ty, peo­ple with dis­abil­i­ties must be involved in the design of solu­tions. Too often, inclu­sive inno­va­tion is still designed by experts with­out the par­tic­i­pa­tion of those most affect­ed. Yet social sci­ence and inno­va­tion man­age­ment lit­er­a­ture shows the impor­tance of end-user par­tic­i­pa­tion in the cre­ation process². This approach, known as “co-cre­ation” or “co-design”, is based on the idea that user expe­ri­ence can enrich and guide the design of more appro­pri­ate solu­tions. In the field of dis­abil­i­ty, this ques­tion is par­tic­u­lar­ly cru­cial: how can tru­ly effec­tive solu­tions be designed with­out incor­po­rat­ing the knowl­edge gained from the lived expe­ri­ences of those concerned?

Tra­di­tion­al­ly, exper­tise is asso­ci­at­ed with for­mal, aca­d­e­m­ic knowl­edge, trans­mit­ted for exam­ple by health pro­fes­sion­als or researchers. How­ev­er, work in soci­ol­o­gy and man­age­ment sci­ences has shown that per­son­al expe­ri­ence can also be a valu­able source of knowl­edge³,⁴. This is known as “expe­ri­en­tial knowl­edge”, defined as knowl­edge derived direct­ly from indi­vid­u­als’ every­day expe­ri­ences. This knowl­edge is often over­looked because it is con­sid­ered sub­jec­tive or because it is not expressed in as struc­tured a way as for­mal knowledge.

How­ev­er, the recog­ni­tion of expe­ri­en­tial knowl­edge has begun to trans­form prac­tices in the fields of urban plan­ning⁵ and men­tal health⁶. As illus­trat­ed by the recent ref­er­en­dum ask­ing Parisians to decide whether or not to pedes­tri­anise 500 streets, cit­i­zens are increas­ing­ly being asked to give their opin­ions on urban devel­op­ment. In the field of men­tal health, the rise of “peer sup­port”, i.e. mutu­al aid between peo­ple suf­fer­ing from the same men­tal ill­ness or addic­tions, has led to the recog­ni­tion of expe­ri­en­tial knowl­edge, repo­si­tion­ing the patient in the care rela­tion­ship. This is described by France Inter jour­nal­ist Nico­las Demor­and, who recent­ly went pub­lic about his bipo­lar dis­or­der, when he talks about “co-con­struc­tion” to describe his care rela­tion­ship with his psy­chi­a­trist⁷. Nev­er­the­less, recog­ni­tion of expe­ri­en­tial knowl­edge remains uneven, oscil­lat­ing between com­ple­men­tar­i­ty and oppo­si­tion to pro­fes­sion­al knowledge.

Expe­ri­en­tial knowl­edge dif­fers from mere expe­ri­ence. It requires aware­ness or for­mal­i­sa­tion of the expe­ri­ence. Lehrer⁸ pro­pos­es a pro­gres­sive approach to this for­mal­i­sa­tion: we are “famil­iar with” (acquired knowl­edge) before we “know how” (prac­ti­cal knowl­edge) and then “know that” (propo­si­tion­al knowl­edge). Oth­er researchers have worked to describe the types of expe­ri­en­tial knowl­edge acquired by indi­vid­u­als and shared, par­tic­u­lar­ly in peer-to-peer shar­ing⁹.

In the field of inno­va­tion, com­pa­nies have been inte­grat­ing con­sumers’ expe­ri­en­tial knowl­edge since the 1980s, par­tic­u­lar­ly through co-design prac­tices for prod­ucts and ser­vices. Man­age­ment sci­ence research shows that these prac­tices improve cus­tomer sat­is­fac­tion and offer a com­pet­i­tive advan­tage¹⁰. The selec­tion of “good” con­sumers for co-design has attract­ed par­tic­u­lar inter­est, par­tic­u­lar­ly around “lead users” [editor’s note: indi­vid­u­als or organ­i­sa­tions that antic­i­pate the cru­cial needs of the gen­er­al pub­lic in advance and devel­op solu­tions to meet these needs]. How­ev­er, the knowl­edge they draw on remains poor­ly char­ac­terised, as is the case with so-called “ordi­nary” consumers.

In our research¹¹, we start­ed from the obser­va­tion that the expe­ri­ence of pain and unsuit­able envi­ron­ments faced by con­sumers with dis­abil­i­ties gives them a unique per­spec­tive that can be use­ful in the prod­uct design process, not only for them­selves, but also in a uni­ver­sal design approach, i.e. for all con­sumers¹² . For exam­ple, for many con­sumers, the phys­i­cal expe­ri­ence is not a fac­tor when it comes to con­sump­tion; we don’t notice it because it doesn’t cre­ate any con­straints. For peo­ple with dis­abil­i­ties, how­ev­er, it takes on a more cen­tral role, lead­ing to a dif­fer­ent and more con­scious expe­ri­ence of use. Based on these find­ings, we sought to bet­ter char­ac­terise the expe­ri­en­tial knowl­edge of con­sumers with disabilities.

Since 2018, APF France handicap’s Tech­Lab has been involv­ing con­sumers with dis­abil­i­ties in the design of prod­ucts and ser­vices for com­pa­nies of all sizes that want to bet­ter meet their needs. Our research at the Tech­Lab shows that expe­ri­en­tial knowl­edge can be clas­si­fied into four cat­e­gories: phys­i­cal and sen­so­ry knowl­edge, cog­ni­tive knowl­edge, con­tex­tu­al knowl­edge and emo­tion­al knowledge.

Each of these cat­e­gories reveals how expe­ri­en­tial knowl­edge enrich­es our under­stand­ing of the dri­vers of co-design with con­sumers and high­lights the spe­cif­ic nature of the improve­ments they can bring.

Three prin­ci­ples for lever­ag­ing this knowledge

Our research has iden­ti­fied three char­ac­ter­is­tics of expe­ri­en­tial knowl­edge that are use­ful for lever­ag­ing it.

1. Recog­nise the mul­ti­di­men­sion­al nature of knowl­edge, which makes dif­fer­ent cat­e­gories of knowl­edge interdependent.
2. Con­sid­er its trans­fer­abil­i­ty: expe­ri­en­tial knowl­edge can be trans­ferred from one prod­uct to anoth­er and goes beyond the spe­cif­ic dis­abil­i­ty of the indi­vid­ual. There­fore, it is not nec­es­sary to be a user of a spe­cif­ic prod­uct to have a rel­e­vant opin­ion to express.
3. Go beyond basic needs: As peo­ple with dis­abil­i­ties often face bar­ri­ers that hin­der basic needs such as mobil­i­ty, they can be encour­aged to explore the range of pos­si­bil­i­ties beyond imme­di­ate accessibility.

Recog­nis­ing con­sumers’ expe­ri­en­tial knowl­edge as a legit­i­mate form of exper­tise fun­da­men­tal­ly trans­forms inno­va­tion process­es, par­tic­u­lar­ly when it comes to inte­grat­ing the per­spec­tives of tra­di­tion­al­ly mar­gin­alised pop­u­la­tions. Organ­i­sa­tions that adopt these par­tic­i­pa­to­ry approach­es are not only respond­ing to an eth­i­cal imper­a­tive: they are devel­op­ing prod­ucts that are inher­ent­ly more suit­ed to a diverse range of users, there­by enhanc­ing their com­pet­i­tive advan­tage. Two decades after the enact­ment of the 2005 law, inte­grat­ing the expe­ri­en­tial knowl­edge of peo­ple with dis­abil­i­ties into all design process­es could be a key lever for a more inclu­sive soci­ety. This approach is now a strate­gic neces­si­ty for com­pa­nies whose prod­ucts and ser­vices will have to demon­strate acces­si­bil­i­ty from 28th June 2025, when the Euro­pean Acces­si­bil­i­ty Act¹³ comes into force.