Speaking from the point of view of functional diversity in Bergen
Antonio Centeno's speech during the opening weekend of the Norwegian art event Bergen Assembly
Crip politics of desire and pleasure: speaking from the point of view of functional diversityI would like to thank the organisation for the invitation to this Impossible Parliament, beyond the usual protocol thanks, because people with functional diversity know very well that representative parliamentary systems do not work, and it is time for everyone to know it. In Spain, no law on functional diversity has ever been complied with. This means that, among other daily violence, hundreds of thousands of people are still locked up in institutions, and nobody takes responsibility for this permanent illegality, with no legal or political consequences. How is this possible? What is wrong with the apparently irrefutable logic of representative democracy? Is there any kind of solution? I would like today to discuss possible causes of this systemic error and its alternatives, perhaps as impossible as this Parliament, but - for that very reason - just as essential. First of all, the lack of material support for life, such as personal assistance, universal accessibility or inclusive schooling, for example, keeps people with functional diversity living in a parallel universe, confined to residences, special schools, special employment centres, occupational centres, etc. Good intentions, prejudices and social inertia isolate us and make us alien to the majority of the population, who have no interaction with functional diversity. This generalised segregation generates “all about us without us” policies. The political participation of people with functional diversity is prevented and those who claim to represent us lack life experience in any aspect related to our reality. It is not strange that they want to believe that the issue of functional diversity is a merely technical question, but what is the point of putting ramps in all the discotheques if when we enter nobody wants to dance with us? We have to understand that we are facing a situation of generalised discrimination and oppression, to value the motto of the Independent Living Movement “Nothing about us without us” and, from there, to propose that locking us up in institutions or supporting families so that we depend on them is not part of the solution, but part of the problem.capacitism is expensive, it is paid mainly by people with functional diversity, but the bill also reaches the rest of society. We know that including difference in any field is an engine of social transformation that improves it for everyone; excluding it means losing opportunities to live better. Clear examples are schools, which have more and better teaching tools for all students, transport, which is more comfortable and safer for everyone, or architecture and urban planning, which become friendlier for the population as a whole. While this loss of opportunities for a better life is serious, especially considering that we will live longer and survive more illnesses and accidents, it should be noted that we pay the highest price in terms of gender. The entire disability and dependency industry is sustained on the basis of compulsory care by the women in the family. The lives of this army of slaves have no value, the spreadsheets of the public authorities say that this work is free. When we understand, as Machado said, that it is foolish to confuse value and price, we will realise that capacitism is unsustainably expensive, which is why the model of independent living is interesting. Because it proposes participation and coexistence. “Independence” is a historical term, which refers not to doing things by ourselves, without support, but to having all the responsibility and freedom to manage the necessary support, thus avoiding situations of dependency. That is to say, there is a shift in decision-making from the family and professionals to the person with functional diversity. This means recognising one's own autonomy as a result of the interaction with others in equal conditions of responsibility and freedom, without relations of domination. In short, we are talking about “interdependence”, although for historical reasons we keep the word ”Independence“. It is from this interdependence that both direct participation in politics and coexistence are possible. We need to reclaim our bodies and lives for ourselves and stop being aliens to others, and the independent living paradigm is often dismissed as elitist and economically unsustainable. It must be taken into account that assuming oneself as oppressed and claiming freedom requires an empowerment that involves having a certain ”passing“ as ”valid“, something that almost always has to do with privileges of ability, class, race, gender, etc. Nothing new under the sun, the same as has always happened in any other liberation movement. The important thing is, from this awareness of having privileges, to articulate a political process that is for everyone, coherent in theory and viable in practice. In this sense, it must be understood that people with intellectual or mental diversity make their own decisions in their own way, with the necessary support. Usually, in collaboration with the guarantor person and their circle of supports, they delimit a decision-making map; what they can decide by themselves, what they decide with the support of their assistants, and what they decide through the interpretation of their will. Thus, when we talk about deciding, it is implicit that we are referring to each one doing it in their own way, the model of independent living is also for people with intellectual or mental diversity. As far as the economic issue is concerned, all experiences and studies point out that locking us up in institutions is more expensive than keeping us in the community with the necessary personal assistance. Some data from 12 years of experience in Barcelona illustrate this general fact: personal assistance 2,700 €/month on average, residential place 3,200 €/month, SROI 3 (social return of investment). The latter means that for every euro invested in personal care, a social impact of €3 is generated. Indeed, if the laws emanating from parliaments, although deficient, formally recognise the right to independent living of people with functional diversity and pilot experiences and studies certify that it is possible to implement it in a socially and economically sustainable way, why do they continue to lock us up in institutions? Because there are other more powerful laws, the unwritten laws, those that, through culture, art and the media, inform us of what the world is like and how we should act. Moreover, these unwritten laws are reinforced without the counterweight of a context of coexistence. The story that is told about functional diversity is distorted, also here, by the ”all about us without us“ and strongly stereotyped; basically, only the ”absolute wretch“ (in Spain, the film with the most Goya awards is ”Mar adentro“) and the ”hero who, thanks to the help of normal people, overcomes and is inspiring“ (in Spain, the latest winner of the Goya for the best film is ”Campeones") are represented. The former justifies overprotection over personal freedom, as happens when we are locked up in residential homes. This cultural representation of functional diversity, biased, stereotyped and polarised, also incorporates a permanently infantilising and asexualising gaze. And of course, if we are seen as children, we are treated as such. The idea is constructed that we are already well taken care of by families, that this dependence is natural. That is why it is necessary to sexualise functional diversity, to re-politicise it. To the extent that we make ourselves visible as sexed and sexual beings, as desiring and desirable bodies, it will be more difficult to continue thinking of ourselves as children, and if we are not children it is not natural to depend on families, these situations of dependence are a political question about how we organise ourselves collectively to make all forms of autonomy possible, including the one that consists of doing everyday tasks with the hands of another person and our own decisions. This form of autonomy requires support figures such as personal assistance and sexual assistance. The latter, defined as support for sexual access to one's own body, is key in the process of sexualising functional diversity. Not because this is our way of living sexuality, but because relating to one's own body through desire and pleasure is essential to be able to build links of all kinds with others. It is common to witness the debate on whether sexual assistance is a right. Those who are against it argue, among other things, that it is not a right because it does not respond to a need. One can live without sexual pleasure, they say. This is a disturbing conception of the right, to say the least. My father, who was born poor in the middle of fascism, never went to school. So yes, you can live without education, but do we want to live without education? This seems to me to be the key question, to make politics from the point of view of what do I need, or to make it from the point of view of what do I want? The politics of need responds to fear, insofar as it is impossible to live without such a thing, and de-responsibilises, since need is presented as a natural law external to the person. Perhaps it is time to activate the politics of desire, what do I want, as a way of personal and social commitment and accountability, and to make politics out of desire requires an ethical commitment to one's own desire. First of all, we have to make sure that our desires are our own: do we want to accumulate capital or do we want to live with dignity? It is essential to construct an erotics of dignity, to place it at the centre of any desire we construct. On the other hand, we need to question our experience of desire. Sometimes, it might seem that the only meaning of desire is to become pleasure, applying a series of techniques in each case. This would be a dead, repetitive desire, incapable of moving all that is necessary to face the complexity of living. We need desire to be a form of pleasure, so that the unconnected segments that place desire and pleasure at their extremes become virtuous circles in which desire and pleasure feed back on each other, they remain as alive as everything they have to respond to.Finally, we need to know who we are, who we count on to open up experiences in these politics of pleasure. To begin with, there are many of us who share the vital experience of having been crushed by the politics of fear and its normalising mythology. Women, the LGBTQ+ community, the fat, the crazy, the racialised, people with functional diversity, and so on. And those who have lived the brief reverie of normality will be in for a rude awakening when age, illness or other circumstances expel them from that plastic paradise. So the alliance is open to anyone. Our differences have been pathologised, stigmatised and it seems that, as a final destination, some social gaps are reserved for us in which to tolerate each other. But we know that nothing but desire is enough. Anything less than wanting us is assimilationism. We are here to transform, we want it all, we demand desire.Antonio Centeno, 2019
