stigma

achondroplasia (DWARFISM stigma)

Achondroplasia is a skeletal dysplasia caused by a genetic mutation that, in most cases, occurs spontaneously (i.e., arises in the development of the fetus without the parents having the condition). Achondroplasia affects, among other issues, the normal growth of bones and joints, causing the most common type of dwarfism. For people with achondroplasia there are many related health complications, some of them severe, such as those derived from spinal cord compression that can cause paralysis of the limbs and other serious illness. In addition, the short length of their limbs implies significant physical barriers, such as accessing the controls of electronic mechanisms (elevators, automatic door openers, ATMs, switches, POS terminals, etc.) or other services designed for taller individuals, such as customer service counters, shelves in shops, bars and tables in hotels and restaurants, etc. Achondroplasia is therefore a physical disability.

However, and despite the importance of these physical and health-related handicaps, the most serious problem that people with dwarfism face is undoubtedly social stigma and the little awareness that exists regarding the difficulties surrounding this physical condition.

As stated by the ALPE Achondroplasia Foundation, achondroplasia is perhaps the only disability about which we still currently allow ourselves to make jokes. The relation between dwarfism and humor is a century-lasting tradition that affects the way people with dwarfism are socially perceived nowadays. Indeed, the ease with which achondroplasia is linked to the burlesque scene is a problem of the first magnitude for affected people, as the buffoonish image associated with dwarfism often means that achondroplasia and the people who suffer from it are not taken with the seriousness that is deserved. Constantly, in their day-to-day lives, people with achondroplasia suffer from others impolitely staring at them, many times accompanied by supposedly sympathetic comments that, however, are hurtful and humiliating to them. This tendency to associate dwarfism with the comic, together with the social devaluation of a physical appearance characterized by extremely short height and body disproportion, makes the social stigma of achondroplasia one of the strongest of the stigmas that exist.

The study of the social stigma of dwarfism and the strategies that affected people use to deal with it were the subject of the doctoral thesis of the principal investigator of the team, Saulo Fernández Arregui: DOCTORAL THESIS

One of the main contributions derived from this research work was the development of strategies to cope with the stigma of dwarfism and how the popularity of these strategies depends on the social and cultural context. Specifically, we focused on the study of two strategies: one with a more individual approach based on limb elongation surgery; and one with a collectivist approach based on the development of a positive social identity toward the group of people with achondroplasia. The results of this work were published in Rehabilitation Psychology (Fernández et al., 2012) and in the chapter “Moving toward or away from a group identity” from The Social Cure (Branscombe et al., 2012).

Collaboration with the ALPE Achondroplasia Foundation continues to be very close and productive.