Functional diversity: why you need to talk about it
Have you heard of functional diversity?
Among the many human differences that cause inequalities in our society, what we know as “disability” is still very little discussed, known and prioritized, even by people and organizations committed to building a better world. How can we bring this agenda closer to everyone and help people realize that we all have to do with it?
I believe that the idea of functional diversity, which has been opening my mind, brings valuable clues in this direction. I learned about this concept in a course I took with the incredible María Elvira Díaz-Benítez at UFRJ in 2015 on “Intersectionality and Social Markers of Difference”, when I read Melania Moscoso and Robert McRuer.
Functional diversity is an alternative expression to “disability”, which seeks to break with a negative and pejorative idea associated with people and bodies that would be outside a supposed pattern of “normality”. The concept was proposed by Agustina Palacios and Javier Romañach in January 2005 at the Forum for Independent Living in Spain.
The terminologies generally applied to disabilities were initially developed by players in the field of medicine, social security and rehabilitation, not by people with functional diversity. As explained by Dr. Ray Pereira, these terminologies hold the person directly responsible for her physical or organic condition, at the same time that they seem to exempt society and the physical environment from any responsibility or participation.
“Ironically, so-called people with disabilities become limited exactly at those points where society and/or the environment are excluding functional diversity. Considering that language produces, modifies and guides thought, some organizations of people with functional differences have invested in new terms, in order to implement another conception about the condition that we usually refer to as disability. The Spanish proposal is to substitute pejorative terms such as disability, incapacity, invalidity etc. by the expression functional diversity. Disability thus becomes a functional difference” (Dr. Ray Pereira’s explanation is in this article).
People with functional diversity are people who function differently, but who do not lack something. Changing this paradigm is fundamental so that people with different body configurations and cognitions are not prevented from exercising their own individuality and agency and decision-making capacity. It’s necessary so that they are seen and treated as subjects of rights, and not as objects of intervention, in the words of Uruguayan Mariana Mancebo.
And also to question the production and the limits of what we understand as normal or capable: “disability” is also relational, everyone may need assistance at some point. As Debora Diniz writes, “disability must be understood as a broad and relational concept. Disabilities are any and all forms of disadvantage resulting from the relation between the body and injuries and society ”.
It’s about looking at the issue beyond a biomedical model, focused on rehabilitation and “fixing a problem”, to a social model, focused on the social oppression experienced by these people. The problem is not in the individual, but in the models of life, mobility and enjoyment of the senses that society imposes on us. Functional diversity is less about organic or bodily injuries and more about social, architectural, communicational aspects that shape and limit our world, producing what Robert McRuer calls “compulsory able-bodiedness”.
“The movement for functional diversity shows that disability is not a natural condition, but the effect of a social and political disabling process. The sound world is no better than deafness. Bipedal, vertical and mobile life is not a better life without the architecture that enables it ”, writes Paul B. Preciado.
So we can change our vision and advance the rights of people with functional diversity, we need to bring these issues into everyone’s daily lives. In my journey, I have been learning, for example, with:
- Anahí Guedes de Mello, a Brazilian researcher who is a reference on the subject and leads the Brazilian Network of the Independent Life Movement. I highly recommend this interview and her recent article in which Anahí shows how initiatives like Teleton end up reinforcing capacitism, which is the discrimination of people with functional diversity.
- Women’s groups like Inclusivass and the Feminist Collective Helen Keller, that shows how women’s movements still need to face this agenda and make women with functional diversity visible.
- Several Brazilian women who are talking about their visions on Instagram, such as Leandrinha Du Art, media activist, writer, photographer, LGBT and feminist activist; Lele Martins, content creator on self-care, fashion, lifestyle and being a black woman with disabilities; Stephanie Marques and the anticapacitist youtuber Mariana Torquato.
- Judy Heumann, American activist and leader in the fight for the rights of people with disabilities, with extensive work with organizations and governments to advance public policies. With her I learned “Nothing about us without us”, the motto of the movements of people with functional diversity. Watch her TED Talk and also the fantastic film Crip Camp: a Disability Revolution (2020). Available on Netflix, the documentary produced by Barack and Michelle Obama tells the story of Camp Jened, a summer camp that brought together people with functional diversity, of which Heumann was an active visitor.
- The encounter of the artistic collective Post-Op and the Associació per la Vida Indepent de Barcelona, showed in the film Yes, We Fuck! (2020), which addresses the sexuality of people with functional diversity. They are part of the handi-queer movement (people with functional/queer diversity), which works against the prejudiced and mistaken idea that bodies with functional diversity are asexual or undesirable.
- Alice Wong , creator of the Disability Visibility Project, an online community dedicated to creating, sharing and expanding disability media and culture. Alice’s book is on my 2021 reading list.
+ speaking of books, Jourdan Saunders just shared this amazing list of books written by authors with functional diversity
+ I first met Alice Wong among the Ford Foundation’s Disability Future Fellows, a very inspiring group.
+ in the philanthropic sector, the Disability Philanthropy Forum is an online resource for peer learning, resource sharing, and funding for disability inclusion.
In addition to public people, there are many people with functional diversity around us — more than one billion people, 15% of the global population. In Brazil, this number reaches almost 25% of population — about 46 million people, according to the 2010 Census.
Where are these people in our daily lives? Where they could be?
Let’s hear them and learn from them. Deconstructing binarisms allows us to see better the infinite range of possibilities of human existence. And it frees all of us.
