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.