“Cultural representations of functional diversity are scarce, stereotyped, and polarised”

The heart and soul of any project are the people who make it happen, the spirit that brings them together to make a dream come true. 

In the case of our Concomitancia in Barcelona—Diversorium: Live Arts and Space for Coexistence—, these people are the citizen-commissioners Antonio Centeno and María Oliver, members of the OVI-Oficina de Vida Independiente (Independent Living Office) in Barcelona. For them, culture is more than just a channel for the transmission of political discourses and ideology: it is a real element that promotes and accelerates social change. Together with our mediator Veronica Valentini, Antonio and María are working on a project that will bring together bodies that want to enrich their reality through exchange and coexistence with the other. 

Maria, you describe yourself as an “activist since the age of 12.” Tell us about this long journey so far. 

MARÍA: Activism is the only uncomfortable-comfortable way of living in functional diversity. Otherwise it becomes a very sad experience and we’re also reduced to an almost object-like status. Activism is the only solution to everything imposed on us by this society that discriminates against us.

It’s also a tool to bring about change.

M: Absolutely, it has made all our achievements so far possible. In this sense, I have a lot of respect for functional diversity activists, and all activists. But when I first landed in this world I wasn’t aware of the importance of the daily struggle as an essential need that goes beyond achieving concrete goals and scrabbling for rights that seem obvious but are not implemented. 

“When you have a position in life with no apparent functional diversity—and you’re useful, you work, you’re productive for society—you assume that people with functional diversity have acquired rights and that they more or less have their lives sorted out. But I realised that this is not the case, you have to fight for everything, to keep working, for the pension, for pavements you can use and buses you can catch”

The OVI (which provides services to people with functional diversity) has been working since 2006. Antonio, you were one of its founders and María, you joined later: what are some of your achievements so far?

ANTONIO: At first we were a small group of nine people, and it was an unusual way for an OVI to start. It was self-organised by us, rather than set up by the public administrations. Over the past fifteen years we’ve managed to at least hang onto what we had, despite the political changes in Barcelona City Council and the Department of Social Affairs. 

We’ve also acquired knowledge through a study based on the SROI (Social Return on Investment) method, which determines the economic efficiency of a service, and concluded that for every euro the government spends on personal assistance, there is a social return of three euros. We have also gone from being a pilot project to being a model for cities. Today, the provision of assistance for independent living is the core of functional diversity services, and many other services provided by the Catalan government revolve around it.

So taking into account the slow pace of public administration, we’ve made a great deal of progress in fifteen years. The government’s way of working has changed considerably. But life moves at a different pace, it comes at a high personal cost. It’s terrible to have spent fifteen years of our lives getting out of bed. So yes, we’ve achieved things, but we’re very tired. 

What challenges are coming up on the roadmap?

A: Apart from picking up speed after fifteen years, we still need to awaken the desire of people with functional diversity to be able to live their own lives, with the support of this personal assistance. This is a slow, interesting, more complex path that also connects us with other kinds of channels such as culture, creating a richer and more realistic imaginary of what functional diversity is. 

Part of this constructed ideology is the concept of normality, which you spoke about during a talk at the San Sebastián International film festival. 

A: Normality is an odd idea that’s hard to define. There’s a shared framework for gender, sexual orientation or identity, ethnicity, language, and religion that allows those in power to decide what is “normal” or the same as them.

"Functional diversity challenges the social mandate that everyone should be productive and compete with everyone else. People with functional diversity are very useless and it’s not easy to defend the right to be useless, all efforts go into trying to argue our usefulness in order to try to seem normal. We defend difference as a better way to live and a more realistic way of dealing with life. Trying to manage the reality of functional diversity from the mindset of homogenisation doesn’t work. Our task is to forge alliances with others who are subject to the same oppressive system and to contribute in other ways"

It’s really interesting how you use difference as a element of strength, not segregation.

M: We start with the premise that the idea of living alone, as an individual or a group, is not just impossible, but absurd. We’re social animals, it’s trite but true. The aim of Diversorium is to make room for pleasure and joy in the margin where we have been confined by those in power, who configure the idea of normality and exclude us. To set up alliances and create a strong front that can transform the imaginary within us, almost at the DNA level. The only way for joy and pleasure to enter that margin is through culture, celebration, and the presence of desire, and that has to be summoned in some way, even by almost magical means. 

A: It's a difficult balancing act, you have to have spaces and dynamics to come together as a community in order to raise awareness, to develop a political voice for this sector, and move from the personal to the collective. But this political identity is not a means to create a parallel world. Rather, it should connect us with other groups for political action, so we don’t remain stuck where we’ve always been, with charity and solidarity, which has been bad to middling for us. 

How does culture help to change this imaginary?

A: We need to change people’s outlook and values regarding our reality, and this comes from direct experience, by promoting a model for living together that puts an end to ghettos and dispels stereotypes. This is happening very slowly. In this sense, culture and art don’t just change reality, they create it, and this is an enormous responsibility. 

Does culture also fuel stereotypes?

A: There’s very little cultural representation of cultural diversity, and the little there is, is biased, stereotyped and polarised. We only see representations of individuals who suffer a great deal, whose only future option seems to be suicide, like Ramón Sampedro. And at the other extreme, there are the nice, inspiring people who are real fighters and help liven up the lives of bored normal people, as in the film Champions. Culture and the media need to build a much richer, more realistic, diverse narrative that shows that it’s possible to live independently with functional diversity, and that people with functional diversity want to live that way. 

Choosing another cultural representation of functional diversity is also enriching.

A: It is a two-way model, a process in which culture is not merely a tool at the service of particular policies. It can be inspired by and harness the interesting creative potential of diversity for its own work. 

"The unfortunate thing about these productions is that they end up only interesting the group. I think the public’s resistance is the big problem, that’s why we have to persevere.” María Oliver, Diversorium citizen-commissioner 

How did Diversorium emerge in this context, and what are your dream outcomes for it?

M: In the current circumstances it’s hard to think about coming together, getting to know each other, and sharing a space, but the ideal is to find a model that can be copied in other cities that develop their own Diversoriums.

“This project arises from the need to create spaces in which pre-existing categories break down when people come together. And to show that difference is not problematic but an aspect of life that can help improve a society”

A: I think there will be a snapback. After this long period of isolation and lockdown, of perceiving others as a risk, there will be a huge need to go back to physical presence, to sharing with others. In a sense, this could benefit Diversorium because there will be a lot of “normal” people open to the idea of coming together and sharing in informal spaces, through celebration. The important thing for us now is to try to time our progress to match that snapback. I just think back to what happened with the event at the Apollo, it worked even though nobody knew about it yet. I hope that as word gets out it will make even more sense and the context will be even more favourable than before the pandemic.