World Down Syndrome Day




In light of World Down Syndrome Day 21st March 2015, it is the ideal opportunity to take the time to recognise the recent achievements of individuals with Down syndrome. A number of positive individual success stories have caught media attention both in Norway and also elsewhere across the globe, and it is great to celebrate these. In addition to individual success stories catching media attention, the inclusion of individuals with Down syndrome in media outlets such as television, theatre, music, art and literature all have an influence on our perceptions of people with Down syndrome and challenge stereotypes, with the potential to help the public to better understand and respect any individual with Down syndrome. In this post we will highlight some of the latest stories regarding individuals with Down syndrome that have caught public attention via the media.

Starting with the example of a strong confident role model, having a real impact, is public speaker Marte Wexelsen Goksøyr. In 2014 Norway celebrated 200 years of the Norwegian Constitution and NRK arranged a jubilee broadcast. Marte Wexelsen Goksøyr was amongst several speakers– she is a regular contributor to the debate about abortion and the value of life. She writes, acts and speaks bluntly about these subjects and societies views on intellectual disabilities. She`s a 33 year old woman with Down syndrome. Her contribution to the Norwegian Constitution jubilee is a speech named ‘I want to live!’ -The link to the broadcast – NRK (16th of February 2014) is here: https://www.youtube.com/watch?v=-YY6vTQR-9E
Article about Marte Wexelsen Goksøyr from Norwegian Network for Down Syndrome:

There have been a number of individuals with Down syndrome acknowledged recently in the news for their specific talents. In September 2014 a news article caught our eyes, the article was about a talented photographer - his photographs are unique, for instance capturing photographs of wildlife from stunning angles. He has Down syndrome and his Mother has commented that he ‘sees the world differently’. His ability to see the world differently may be  what makes his photographs so interesting. The article is here: http://www.bbc.co.uk/news/magazine-29107894


From individuals with Down syndrome taking photographs, to individuals with Down syndrome being photographed… In the news recently, a photographer based in Germany took photographs of individuals with Down syndrome, where they were able to express who they were and be seen in the way that they would like to be seen. This was part of a project entitled ‘Real prettiness’ – the idea is to see beyond the disabilities, and embrace individual characters, the photographs can be seen here:

Another example is the Norwegian photographer Bjørn Wad who photographs individuals with Down syndrome and their families. He aims to get pictures of individuals of all ages. The end result will be an exhibition and a photobook. Read an article about the project here: http://www.nfunorge.org/Global/ Nyheter%20NFU%20sentralt/SFA/SFA2_2014_arkiv.pdf

Also taking creative photographs recently were a Mother with her daughter who has Down syndrome. They were both involved in taking and being in the photographs, and the end product is really beautiful: http://www.huffingtonpost.com/2014/01/03/emer-gillespie-mother-daughter-down-syndrome-laoisha_n_4537682.html

Others have been photographed in the name of fashion - recently American actress Jamie Brewer became the first model with Down syndrome to walk down the run way; she took part in New York fashion week and did an amazing job. She is a great role model to encourage people both with and without Down syndrome to be comfortable with who they are.

We have also seen musical talent; a 13 year old girl with Down syndrome from Canada made headlines recently after singing in a Youtube video… she became a star overnight. This story had particular impact because it is often claimed that individuals with Down syndrome are not able to sing, with individuals often having a hoarseness to their voice. Pryce (1994) researched vocal muscles in Down syndrome, finding that twice as much energy was needed to activate the vocal mechanism in those with Down syndrome compared to those without. Nonetheless, the performance of the 13 year old girl with Down syndrome showed that it is possible to sing and she impressed people across the internet.  See the report here: http://globalnews.ca/news/1807871/toronto-teen-with-down-syndrome-defies-expectations-with-cover-of-all-of-me/


Also on the topic of musical talents, a punk band who include members with Down syndrome have recently been successful in getting through to the Eurovision semi-finals – this shows off the talent that individuals with Down syndrome can develop and advocates inclusion for those with Down syndrome, which is great to see.

Down syndrome awareness can also be raised via literature, Eivind Eidslott is a journalist and writer who wrote a book focusing on the positive sides of having a child with DS: Life with Marikken - “How Down can become an Up”. The book is about becoming parents to a girl with Down syndrome. He writes about the shock that they first went through as a family and about his initial concerns regarding the limitations he thought having a child with Down syndrome would entail. However, as a family they decided to be optimistic and live life as they normally would – they are active hikers and skiers and so they continued this active lifestyle when Marikken was born. Eivind writes about opportunities when you have a child with Down syndrome: 
https://www.tanum.no/
helse-sex-og-samliv/familie-og-helse/livet-med-marikken-eivind-eidslott-9788293110088
Article from Ut.no – webpage run by DNT (“the Norwegian tourist organization”) http://artikkel.ut.no/oppturen-med-med-marikken-1.12090584

In addition to parents writing inspiring books about their own experiences having a child with Down syndrome, individuals with Down syndrome are also able to develop the skills to write their own stories. Grace Chen is a Canadian author with Down syndrome who has published her own book! Just last week, Grace and her collaborating author Judy McFarlane went on television in Canada to discuss writing together –and they also remind viewers about Down syndrome awareness day 2015! Watch the clip here:

As well as numerous individual success stories that have been in the news, there has also been media attention regarding the nature of Down syndrome, and intellectual disabilities more generally, as a result of recent television shows, theatre performances and films that have included individuals with Down syndrome:

Both in Norway and in the UK we`ve seen reality shows on television focused on the lives of individuals with intellectual disabilities – some of them with Down syndrome. In Norway Tangerudbakken is a well-known reality documentary about six adults with intellectual disabilities living in an assisted living facility in Oslo. Three of the adults living in Tangerudbakken have Down syndrome. The show has received a lot of attention and last year they celebrated 5 years since the individuals moved into their homes and started the production/broadcasting of the show. While this show does put people with Down syndrome in the public eye and increase awareness of the condition, there has also been some debate regarding ethical aspects of the show, in that there may be an element of mockery and an unrealistic representation of life with Down syndrome.
Home page Tangerudbakken:

In the UK a show called the ‘Undateables’, focuses on individuals who are looking to find a relationship but who also experience a disability, ranging from autism, dwarfism, Tourette syndrome, and also including Down syndrome.  In this show dating agencies arrange a date for the individual and they are then filmed on the date, there are often awkward moments. Often the individuals who have learning difficulties fall for each other very quickly. Recently a woman with Down syndrome in her 20’s was on the show, she was very romantic. She met a man also with learning difficulties and they got on extremely well and began a romantic relationship together – the woman was confident, chatty and a great cook. In many ways the show offers a sensitive, respectful insight into the romantic lives of the individuals involved, and also gives some background on the individual and the difficulties that they can experience. However, because people often say funny or inappropriate things on the dates some viewers may also feel that there is an element of mockery for entertainment.

One documentary that was recently on television in England provided a really insightful portrayal of the ups and downs of living with Down syndrome – the film maker captured some beautiful scenes. The documentary was named ‘Growing up Down’s’, and was based on following a theatre group of individuals who have learning difficulties preparing for a performance of Shakespeare’s Hamlet- the main focus was on one of the boys (Tommy) who had Down syndrome. The documentary was filmed by Tommy’s brother – perhaps this personal experience is what lead the film maker to produce what seemed to be such a sensitive, honest and insightful portrayal of Down syndrome.

The documentary was moving in a number of ways – capturing love and intimacy (though filmed in a thoughtful non-invasive way), capturing moments of individuals finding inner strength and releasing that strength through acting. Capturing individuals’ realization that they have Down syndrome, and that they have features of other individuals with Down syndrome, and watching their journey as they process and come to terms with this reality. The documentary allowed the audience to watch individuals cope with the ups and downs of life. The group ultimately reach their goal of performing Hamlet to live audiences - and the performance was incredible. Perhaps this is a perfect example of how it is possible to give the public an insight into Down syndrome in such a way that it is ethical, fair and realistic.

Many individuals with Down syndrome enjoy acting, beyond theatre performance, a recent Norwegian film (2013) is also based on an individual with Down syndrome: ‘Detective Downs’. https://www.facebook.com/DetektivDowns  
see plot summary in IMDb: http://www.imdb.com/title/tt2565306/

Inclusion of characters with Down syndrome in film allows for a reflection of real life. It is important that individuals with Down syndrome are represented in film, theatre, television, and represented in a true, fair and respectful light. Awareness of Down syndrome can also be increased via the influence of social media. A nice example of the impact that can be had via social media was a fathers post on his Facebook page about what he felt was mockery of individuals with Down syndrome in a Norwegian radio show. The Father wrote an open letter to the hosts of the radio show – it received massive attention in social media and gave fuel to the debate about humor/satire about vulnerable groups. The open letter can be seen here in the Norwegian article: http://www.bt.no/meninger/debatt/Hvorfor-kodder-dere-med-at-datteren-min-har-Downs_-Radioresepsjonen-3255281.html

Individuals also use social media to share success stories with one another, for example:

The selection of outlets in this blog post shows that the focus on Down syndrome in the media over the last year has been enormous. We have seen some positive progress in inclusion and increases in awareness of individuals with intellectual disabilities. There have been suggestions that Down syndrome is now a dying diagnosis - meaning that to learn more about Down syndrome, and increase understanding about this syndrome further is not important. However, Down syndrome is in fact the most common biological cause of intellectual disability and the more we increase knowledge the more we understand the successes that are possible and where individuals face challenges – such knowledge is important in order to uncover future directions of support, education and intervention.

Also highlighted when we talk about coverage in the media, is the way in which individuals with Down syndrome are represented, and the question of whether or not all media coverage is a positive thing. Discussions about human dignity are raised and these are challenging – Amongst the critical voices is the leader of the Norwegian association for individuals with Intellectual disabilities (NFU), Jens Petter Gitlesen. He acknowledges that those with Down syndrome and others with intellectual disabilities should be more visible in the media, but is sceptical to some of the media publicity. In his view for instance, some productions on television can appear to mock individuals with Down syndrome, and give an inaccurate image of the life of people with Down syndrome and their opportunities in life (Brenna & Jonassen 2014). The way in which television documentaries as well as other media outlets present individuals and even the titles of shows or news articles could have an influence on the portrayal of disabilities. Some would argue that television show titles and the way the shows are produced often functions as a way to draw more public interest into the show, thereby raising more awareness of disabilities– clearly a positive. That said, there is certainly an element of being entertained by people’s disability-related characteristics in some of these television shows. Although the aims of shows may have been to create more understanding, tolerance and insight into what it`s like to live with an intellectual disability, some shows may nonetheless appear to be patronizing or insensitive to some viewers as well.

While media coverage may increase awareness about Down syndrome, it is clearly important to consider the way individuals are portrayed in these various circumstances. What is vital is how individuals with Down syndrome themselves feel that they are represented, as well as how their parents feel. The level of sensitivity is very important – some parents of individuals and the individuals with Down syndrome themselves may feel positive about coverage in shows – others may feel more sensitive. The ethical guidelines concerning social media, press, television, and films also applies to people with Down syndrome. Since people with Down syndrome often have intellectual disabilities they are considered as a vulnerable group and in that sense it could be argued that they have to be treated in line with this vulnerability. On the other hand, it is important not to reduce people to a diagnosis rather than see them as individuals.

What is important is that these topics are being discussed, and that people are thinking seriously about how best to represent individuals with disabilities or learning difficulties in the media. Examples such as ‘Growing up Down’s’, show that it is possible to create a production in which individuals are represented in a respectful, dignified and honest manner.

With regards to coverage in the news of individuals success stories it is also important to keep in mind the representation that these news stories provide. Celebrating the potential of individuals in the face of having Down syndrome is of course a very positive thing – but, there is huge variability in abilities and symptoms in individuals with Down syndrome, and of course many children with Down syndrome do not develop a talent like the ones selected in this blog – indeed many people without Down syndrome do not have such talents either! It is important that a fair and realistic representation of Down syndrome is shown in the media. This will help individuals to not only be aware of Down syndrome, but also to be aware of the potential strengths and weaknesses related to this syndrome, the diversity of individuals who have Down syndrome, and to have an appreciation of this.

The use of social media to generate awareness can be very positive. Social media provides an outlet for people to share stories of both difficulties and success on a small and large scale, and to discuss, challenge and share knowledge. What we really want to see more of, is people understanding more about Down syndrome, and respecting individuals for who they are, regardless of having Down syndrome or not. It feels particularly appropriate on the World Down Syndrome Day that we should celebrate individuals’ success in breaking barriers. Hopefully there will be many more positive stories continuing throughout 2015.

- Written by Liz, Silje and Kari-Anne -


References
Pryce, M. (1994). The voice of people with Down syndrome: An EMG biofeedback study. Down Syndrome Research and Practice, 2(3), 106-111.

Brenna, K. A. & Jonassen, T. H. (2014, 09.12.). Tangerudbakken viser et bilde som ikke stemmer med virkeligheten. Dagbladet. Hentet fra: http://www.dagbladet.no/2014/12/06/kultur/nyhet/down_syndrom/tangerudbakken/tvnorge/36606011

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