How to build an inclusive culture: Understanding Down syndrome through the lens of diversity

* The following speech was delivered by Martina Fuga, member of the Board of CoorDown on World Down Syndrome Day Conference, 21 March 2016, at the United Nations Headquarters in New York. 

Good evening ladies and gentlemen,

I am delighted to have the opportunity to speak to you this evening about the vital role of culture and cultural transformation in changing attitudes towards Down syndrome and disability to permit full social inclusion.

There is no inclusion without cultural transformation. Unless cultural barriers are addressed, real inclusion will remain an aspiration, not a reality.

Discrimination and prejudice are often not voluntary acts; they are unconscious in nature and flow from cultural attitudes to disability. They are often due to lack of knowledge and experiences with the world of disability. To overcome prejudices and stereotypes and build a fertile environment for inclusion to thrive, we need to understand that the cultural attitudes and the personal resistances to diversity are the real barriers to the realisation of inclusion.

To achieve inclusion, we must adopt a cultural framework around the idea of human diversity and see disability as a natural and legitimate manifestation of that diversity.

What does inclusion look like in common contexts such as the family, education and employment and how do we cultivate an inclusive culture in those environments?  

For example, we can place a student with Down syndrome in a general education classroom but the fact that we have physically placed him or her in the group, does not mean that they have acquired full membership to that group on an equal basis with every other student. The role of the school, educators and the family is not over; it has just started. The classmates of a student with disability will naturally have questions, which, depending how they are answered will shape their understanding of disability and their future relationships with that student. Most answers will be given by parents who themselves operate from within a cultural understanding of disability that does not support an inclusive perspective. Similarly, if we place an adult with Down syndrome into a workplace without addressing the cultural environment then that environment is unlikely ready to welcome him and to recognise their full potential.  By failing to address the operation of cultural attitudes in those specific contexts we are setting up people with Down syndrome and disability for failure.  Are we really implementing inclusion? We are not.

We can raise our children independent and competent, we can offer the best educational support, we can endeavour to maximize their abilities, but if the environment around them remains one of low expectations and unwilling to offer opportunities, their life outcomes will remain constrained by prejudice.

Inclusion is primarily a value system that relies on understanding the experience of disabilities through a framework of diversity.

To achieve inclusion it becomes crucial to work on the cultural transformation with the same investment and determination that we dedicate to creating equitable laws, to undertaking research, to developing helpful therapy supports, and to creating pathways to independence. It is not possible to implement inclusion merely through laws and policies; in a prevailing non-inclusive culture they will be ignored, misapplied and misinterpreted.  The seed of inclusion must first be grown in the mind and in the behaviour of people: this is the real challenge and it is a cultural challenge!

How to cultivate a culture of diversity? Cultural change needs to occur at every level, at the individual and family levels, as well as in broader public and social contexts.

In their own private life, everybody can do their job. Demonstrative advocacy is a powerful way of challenging cultural perspectives of disability.  When people with Down syndrome and disability and their family pursue the realisation of a life lived as a full and equal member of their community, they demonstrate to others on day-to-day basis what is a possible life – sharing examples of what their life can be, in getting an education, having employment, enjoying their community etc, without denying the difficulties – giving evidence of the potential of a person with Down syndrome. These examples build new images, new possibilities in the world around us.

We can build disability literacy also at the playground with the kids or in school with parents of classmates talking about Down syndrome, sharing goals and hopes, achievements and failure, spreading seeds of empathy, respect and confidence. We can do it at school working with teachers and assistant teachers and sharing with them strategies that work at home and can be implemented in the school environment.

In the media and communication context, we need to support the participation and visibility of people with disability, especially in mainstream culture. I am thinking about the presence in the media of people with Down syndrome:

  • in cinema (David DeSanctis in the role of Produce in “Where hope Grows” and Maria Paola Rosini in the role of Giulia in the Italian film “Come saltano i pesci”);
  • inclusion in advertising and fashion shows (for example the model Madeleine Stuart, just to nominate one),
  • on TV (for example Lauren Elizabeth Potter in the role of Becky in Glee) and in television programs such as “Ballando sotto le stelle” in Italy where one of the star dancers is Nicole Orlando an Olympic athlete with Down syndrome, “Hotel a 6 stelle” docu-film about inclusion in the workplace, and “Born this way” the reality TV show with people with Down syndrome now airing on American TV).
  • And of course in Public Service Announcement as the one Annarose show you.

But I am thinking also about other examples in the world of culture:

  • in the art field, the Judith Scott exhibition that I saw last year at the Brooklyn Museum here in New York,
  • in the music world, the Finnish punk group Pretty Kurikan Nimipäivät that achieved extraordinary success at the Eurovision Song Contest 2015 and got widespread coverage by the international media, and
  • through literature (books presenting people with Down syndrome as positive and central characters).

The crucial point is not the achievements of certain people with Down syndrome, but the cultural impact that these examples may have in breaking down the preconceptions. The participation and visibility of persons with disabilities in the mainstream culture allows a world that does not have any experience with disability to know it, to became confident with it, to get used to different and unknown realities, to expand the imagination, until the fear of what is different from me is dispelled and this source of discrimination is stopped.

Even in the world of toys we can see a cultural change. The world has changed and consequently so have its toys too. Lego unveiled its first ever wheelchair-using mini-figure at the Nuremberg toy fair last February. Brands such as Lego use their vast power of influence to positive cultural effect, a pedagogical effect. The goal of the Lego mini-figure is to help children to become familiar with disability and to consider disability as just one form of human variation, a matter of difference rather than something to be feared or worse yet to be pitied. In Italy in the past few months a company put on sale a doll with Down syndrome and it opened a big debate. I recognized in that company the same intentions of Lego.

Rachel Adams, Author of “Raising Henry” spoke about “disability literacy” as something different than “awareness”, and I completely agree. “Literacy” in this sense means not just knowledge, but fluency and comfort with people with disability. Disability literacy is also preparing children to live in a new and more diverse world. We need to build a new alphabet, a new language, it is about expanding the database of our experiences and what for us is considered ordinary.

In the social and public context the Down syndrome associations sit at the political-institutional tables and undertake to guarantee the rights of people with Down syndrome, but likewise they have to work hard at a cultural level promoting a culture of diversity to support the social inclusion of people with Down syndrome in addition to advocating at the legal and political levels.

The importance of a cultural change applies in every area of our society. The acceptance of diversity as the perspective through which we understand the human condition, involves us all – and I am not talking just about disability as a form of human diversity. I consider that the same thinking applies to gender differences, race and religion for example. It is vital for us to embrace cultural change to respond to these social challenges through building an inclusive environment to accommodate the reality of human diversity. Unless we do this, we will continue to marginalise certain groups and deepen social conflicts and divisions that will undermine social cohesion and further fragment our societies.

The real challenge today is changing our cultural attitudes to Down syndrome and disability. The way we see people with Down syndrome has the potential to either exclude them or to welcome them fully as equal citizens. People with disabilities become disabled by the attitudes of those around them – it is how others see people with disabilities that make them different. To me, my daughter Emma is first and foremost “just Emma”.  She is “just Emma” to her brother and sister, she is “just Emma” to her classmates, she is “just Emma” to all family and friends who are close to her and within her environment.  Being “just Emma” means recognising Emma for everything that she is – and some of that may be connected with her Down syndrome.  However, to many who are not part of Emma’s regular world, they only see “Emma–the–girl–with–down–syndrome” and sadly, instead of seeing “just Emma” they see “just Down syndrome”. And this is the point: unless we change our point of view, unless we move beyond seeing people through stereotypes and break down the walls of prejudice, we will fail to recognise people as multi-dimensional and unique individuals and we will fail to appreciate that uniqueness is in fact something that we all share as members of the diverse human family.

The new social campaign that CoorDown created for the occasion of World Down Syndrome Day produced with the creative agency Saatchi & Saatchi in partnership with Down Syndrome International, Down Syndrome Australia, the Down Syndrome Association of the UK, France’s Lejeune Foundation and Les Amis d’Eléonore focused exactly on that cultural theme. The short film that Annarose Rubright has just shown us poses a vital question “How do you see me?” She tell us how she sees herself and her life and challenges the viewer to recognise and reflect upon the subconscious culture of low expectations and societal prejudice towards people with Down syndrome and invites us to expand our point of view, to offer opportunity and to relay on people with down syndrome.

Let’s do it!

Thanks to CoorDown I have had the honor to represent at the Conference.
A special thanks 
to my friend AnnaRose Rubright who spoke on the same panel about her experience of inclusion and presented “How Do You See Me” short film, I will never forget our crossing of glances at the end of the film and your hand squeezing mine.
Thank you also to all the self-advocates who have spoken at the conference, their stories count more then anything else.
A special thanks to my dear friend Catia Malaquias who talked about the potential role of mass media in accelerating inclusion, thank you for your passionate advocacy and for being my