Social and educational dimension

In general, Achondroplasia and dwarfism are strongly stigmatised physical conditions. From a social psychology standpoint, a stigma is defined as a quality that characterises a person or a group and, in certain contexts, is devalued. As a consequence, persons with the devalued characteristic become less socially valued. In the words of Erving Goffman (1963), the person bearing the stigma has an "impaired identity" in the eyes of others.

The physical characteristics of achondroplasia (short stature, body disproportion, different from the norm facial features, etc.) constitute a clear source of social stigmatisation. This makes it highly probable that persons with achondroplasia suffer discrimination and social exclusion throughout their life. Discrimination and exclusion do not occur only in an explicit or obvious way; sometimes devaluation takes subtle forms (for example, in-jokes or well-meaning humorous comments on the physical characteristics of dwarfism, or the prying eyes of strangers that persons with dwarfism experience on a daily basis). Other times, rejection takes on more direct and obvious forms, such as when the physical aspect undermines employment opportunities, or when a person is the object of malicious mockery. All experiences of rejection, whether overt or subtle, undermine the psychological well-being of the persons who suffer them, especially when they are repeated with assiduity throughout life.

Persons with achondroplasia face manifestations of social stigma in their daily life, from a very young age. Over time, the effect of stigma can be very serious. Although persons with achondroplasia often learn strategies to deal with the negative consequences of stigma, thus protecting their psychological well-being, the responsibility to fight against the damage caused by social stigma can not fall solely on the shoulders of the victims. As implied by the term social, which goes hand in hand with the concept of stigmatisation, the whole society should be made aware of the problem it involves; we should all avoid manifestations of stigma, including those that are subtle and even those that are not malicious, since all of them seriously threaten the psychological well-being of the persons affected, as well as that of their loved ones and relatives. We all have a stigma because, as moral philosopher Avishai Margalit (1997) argues, a society that stigmatises and humiliates is not a decent society.

The image of persons with dwarfism has traditionally been associated with buffoonery, grotesque jokes, and other demeaning content, which has contributed (and currently contributes) to perpetuating and deepening stigma. From the "gentes de plazer" of the Habsburg courts (Gutiérrez, 2012) to present-day television programs or shows (such as the buffoonish spectacles of the "funny firemen bullfighters" (ALPE, 2008), often financed by public funds at village festivals in Spain), the "dwarf” has been used for centuries to cause laughter. These shows have in common the fact that they are not intended to provoke laughter through the actors’ wit, but simply by exploiting their physical appearance, often ridiculing them in disguises or morbid performances of dubious taste. All this results in the denigration and public humiliation of the physical condition of dwarfism, and strongly threatens the dignity of persons with achondroplasia as a whole. The exploitation of "dwarfism as a spectacle" also contributes to the perpetuation of the stigma of persons with achondroplasia, complicating their possibilities of development and thus affecting the entire population with achondroplasia.

From the beginning, the ALPE Foundation has been aware of the importance of the psychosocial aspects in achondroplasia, which surpasses the purely physical ones, and we have promoted academic research through a fruitful and long collaboration with the Department of Social Psychology and Organisations of the Faculty of Psychology of the UNED. The doctoral thesis of Saulo Fernández Arregui set a precedent in the studies on social stigmatisation of achondroplasia (Fernández S, 2009). The academic evidence from these studies supports our claims to social justice. This is an innovative line of work, typical of the ALPE Foundation, which has been a milestone in the associative movement of persons with dwarfism.

We also promote and disseminate historical research (Garde, 2016; Gutiérrez, 2012) and all types of literary or artistic creations aimed at offering a sincere and realistic view of persons with achondroplasia.

At the same time, we carried out campaigns that seek to offer a non-stereotyped image (ALPE, 2014) of persons with achondroplasia through various projects, campaigns to protest the denigrating use of the image of persons with achondroplasia (ALPE, 2008), and a regular control of the image of persons with dwarfism in the media, as you can see in two random example letters to Jordi Évole (Fundación ALPE, 2015) and RTVE (Radiotelevisión Española) managers (ALPE, 2014). All these activities are part of the Foundation's usual work.

Fernández Arregui, S., El estigma social del enanismo óseo, engl, Tesis doctoral, UNED, 2009
Fernández Arregui, S., La estigmatización social en la acondroplasia, UNED, 2008
Fernández Arregui, S., El enanismo como espectáculo, 2009
Garde Etayo, M.L., La acondroplasiaen la historia. Una aproximaciónhistoriográfica, en Jesús Longares Alonso el maestro que sabía escuchar, Pamplona, Eunsa, 2016
Gutiérrez, C., Gentes de placer en la Corte de los Austrias, 2012
Carta abierta a los directivos de RTVE, 2014
Carta a Jordi Évole, 2015
Espectáculos cómicotaurinos, Fundación ALPE, 2008

The main objective to be pursued in schooling a child with some difference is standardisation. In an inclusive education, each student has the possibility to develop according to his or her own rhythm and his or her own potentials. This principle of didactic individuation implies curricular and physical adaptations.

At the ALPE Foundation, we follow the motto "all the same, all different". This means, in the case of achondroplasia, that an attempt should be made to ensure all adaptations are useful for all the students. For example, if the child's hanger is lowered so that he can be autonomous when hanging his clothes or his apron, all others, or at least a few, must be lowered so that the child in question is not the only one. In addition, its design must be harmonious with the rest of the decor.

At the ALPE Foundation, we have collated some easy-to-incorporate tips, with a little goodwill and, of course, the involvement of the college and the professionals. Specific documentation on adaptations, and general recommendations for education and psychology, can be found in the section Education, in our Library.