World Down Syndrome Day

In light of World Down Syndrome Day 21^st 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 (16^th of February 2014) is here: https://www.youtube.com/watch?v=-YY6vTQR-9E

Article about Marte Wexelsen Goksøyr from Norwegian Network for Down Syndrome:

http://www.nnds.no/grunnlovsjubileet-2014-marte-wexelsen-goksoyr/

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:

http://www.huffingtonpost.com/2014/11/11/real-prettiness_n_6135980.html

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

https://sykepleien.no/2014/08/marikken

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:

http://www.cbc.ca/news/canada/british-columbia/down-syndrome-author-grace-chen-writes-book-with-help-from-friend-1.2983154

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:

http://www.tvnorge.no/programmer/tangerudbakken-borettslag

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:

https://www.facebook.com/GodFruits/photos/a.182693021824987.42437.177717718989184/621850091242609/?type=1&fref=nf&pnref=story

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

Noen tanker om det å ta en doktorgrad

I morgen skal Liz ha sin «viva». I motsetning til norsk tradisjon, der man har offentlig disputas, gjennomføres den muntlige høringen i England gjerne bak lukkede dører. Styrker og svakheter ved arbeidet blir fokusert. Forhåpentligvis er det en fantastisk følelse for Liz å få diskutere med noen som har satt seg så godt inn i det arbeidet hun har brukt de siste tre årene på.

Det får meg til å tenke tilbake på min egen doktorgradsperiode. Aldri hadde jeg tenkt at jeg skulle ta en doktorgrad. Jeg trivdes utmerket som delvis privatpraktiserende logoped og delvis kommunal logoped. Da veilederen min fra master ringte meg og spurte om jeg kunne tenke meg å søke på en PhD-stilling med fokus på språkferdigheter hos barn med Down syndrom var jeg først lunken til tanken. Jeg trivdes jo så godt i jobben jeg hadde, jeg hadde utfordrende og spennende arbeidsoppgaver, stor frihet og en relativt god lønn. Likevel, etter å ha fått tenkt meg litt om bestemte jeg meg for å søke. Det var fagmiljøet som lokket.

Det var ikke mange ukene fra utlysning til søknadsfrist, så ettermiddagene etter at jeg var ferdig med logopedarbeidet ble flittig brukt til å utarbeide prosjektplanen. Lang praksiserfaring hadde plutselig liten betydning. Først gjaldt det å gjøre gode litteratursøk, så sette seg inn i den nyeste forskningslitteraturen for så å starte skriveprosessen. Selv om jeg opplevde at tiden ikke strakk helt til, fikk jeg heldigvis tilslag på søknaden. Det var en utrolig god følelse, for etter å ha jobbet med prosjektplanen over disse ukene ble interessen for å gjennomføre arbeidet virkelig tent.

Da jeg fikk stillingen må jeg imidlertid innrømme at det var med skrekkblandet fryd. Jeg hadde jo lest «De beste blant oss» av Helene Uri, og jeg var veldig spent på om beskrivelsene i boken samstemte med virkeligheten og hvordan jeg eventuelt vil takle et slikt arbeidsmiljø.  Jeg hadde også en blyghet med tenkt på at jeg nå skulle bli kollega med alle de flinke folkene jeg hadde hatt som forelesere, som hadde skrevet pensumbøker og publisert internasjonale artikler.  Tenk for en ære – og jeg som hadde jobbet mange år «alene», uten noe faglig team å støtte meg på – skulle nå få muligheten til å samarbeide med både nasjonal og internasjonal fagelite. Samtidig var jeg jo litt undrende i forhold til hvordan dette skulle gå – særlig lurte jeg på hvordan det skulle gå med engelsken. Jeg hadde realfag fra gymnaset og eneste engelsken jeg hadde praktisert etter videregående var å lese enkel faglitteratur. Med tanke på uttrykksevne hadde jeg kun bestilt pizza og cola på restaurant - og nå skulle jeg plutselig publisere på dette språket som jeg hadde så liten erfaring med. Det innebar en iherdig arbeidsinnsats til å begynne med. Det var «skanner-pen» og knallhardt arbeid som gjaldt. Språkvask ble også brukt iherdig. I dag er engelsk en naturlig del av arbeidshverdagen, men som Irmelin Kjelaas skrev i sin kronikk i Forskerforum 03.12.2014 er det forskjell på uttrykksevne på første- og andrespråket vårt. Dette stemte også i mitt tilfelle også, men valg av publiseringsspråk kan ikke bare sees i sammenheng med hvilket språk man behersker best. Det er viktig også å ta hensyn til målet med forskningen og hvem som er aktuelle mottakere av det man skriver. Noen ganger vil det kanskje være aktuelt å skrive for å bidra i den teoretiske utviklingen innenfor et område og det vil således være nødvendig å skrive på engelsk for et internasjonalt forskerpublikum, mens andre ganger vil man kanskje fokusere på forhold av praktisk interesse som er viktig å gjøre tilgjengelig på norsk for de nasjonale fagmiljøene.

Innenfor språkforskning på barn med Down syndrom finnes ingen andre stabile forskningsmiljøer i Norge – så det var helt nødvendig å bygge språkkompetansen i tråd med utviklingen av prosjektet.  Å ha en engelsktalende veileder ble min redning – da måtte jeg formulere meg på engelsk for at veilederen min skulle kunne forstå hvordan jeg tenkte. Ut ifra min erfaring bør man i det hele tatt «velge» sine veiledere med omhu for som all annen utvikling påvirkes også den akademiske utviklingen av miljøet man er en del av. I tillegg til gode veiledere var det en enorm støtte å være del av en forskergruppe med høy aktivitet. Dette ga muligheter for å legge fram og diskutere både andres og eget prosjekt, til å delta på seminarer med internasjonale forskere med lang erfaring, til å reise på skriveseminar for å skrive sammen med medforfattere i forskergruppen osv.

Å velge akademia på bakgrunn av ønsket om tilhørighet i et faglig fellesskap – ble en riktig prioritering for mitt vedkommende.   

I morgen er det imidlertid Liz det gjelder. Hun er en fantastisk kollega og forsker i DSL+-prosjektet. Vi i prosjektgruppen sender henne våre beste lykkeønskninger!

Å være doktorgradsstipendiat er

som en parodi over de syv dverger.

I begynnelsen er du Dopey (Minsten)

og Bashful (Blygen). I midten, blir du

vanligvis både trøtt, forkjølet og

irritabel. Men til slutt, kaller de deg Doc,

og da er du forhåpentlig lykkelig.

(fritt oversatt etter http://bbrown.spsu.edu/misc/phd.html. Lesedato 09.03.15)

 

-Skrevet av Kari-Anne-

AAC – Network for Preschools

A six week long practice period at Tøndergård school and resource centre is coming to an end - Oslo, exams and the DSL+ project is waiting. But first I'm contributing in one last network meeting for preschool employees working with children with communication impairments. This network is an initiative from the counselling service at Tøndergård. The inter - municipal special school in Molde offers special education for about 50 pupils. In addition they offer counselling to the schools and preschools in the owner municipals. Children and teenagers with Down syndrome (DS) represent a considerable amount of the pupils at the school, many of them with complex communication needs.

One of the areas of counselling is Augmentative and Alternative Communication (AAC). Ingunn Ostad is leading the AAC - network in collaboration with the Educational and Psychological services. Ingunn and I both attended the AAC - educational programs at Buskerud and Vestfold University College. Common interests within the field led to a collaboration in two practice related projects during our two years at HBV. During my practice I`ve been able to take part in the start-up of this AAC - network. A useful experience - now in my first year of the masters program in Special Education - Counselling and Innovation at the University of Oslo. The goal with the AAC – network is to reach preschools with similar needs and be able to give thorough information regarding complex communication needs and implementation of AAC - interventions. The notion of the importance of individualized interventions is of course taken into consideration - and the participants of the network will all receive individual counselling in addition to the network meetings.

Many individuals with Down syndrome depend on augmentative and alternative communication (AAC). Children with DS represents a group where the use and benefits of AAC is well documented. What set this group apart from others with developmental disabilities might be the combination of early diagnosis and the knowledge of the benefits of early intervention to support language development for this specific group. Most common for individuals with DS is the use of an augmentative form of communication to support the use and development of speech. Some will manage without communication aids further on in life, others will need augmented or alternative forms for communication across the lifespan.

Networks as arenas for counselling of professionals working with children with DS and other developmental disabilities can be beneficial in several aspects. Effectiveness in use of resources and the ability to reach professionals simultaneously is one aspect - but there`s also possibilities to create a motivating arena for learning and development for co-workers in preschools. Hopefully the network will contribute to create a community between the professionals working with AAC in the municipal area - and continue independently after ended counselling from Tøndergård. 

Thanks to Tøndergård school and resource centre for an inspiring practice period!

- Written by Silje Hokstad -

Refleksjoner etter en uke i felten

Denne uka har vi, som del av masteroppgaven vår, testet ut den aller første versjonen av DSL+, sammen med to gutter med Down syndrom. Det har vært utrolig spennende å se barnas reaksjoner i møtet med materialet, og å få være med å jobbe sammen med dem.

Etter en intens uke med mange inntrykk, sitter vi nå igjen med en god følelse – både i forhold til DSL+-materialet, og mtp de viktige dataene vi har fått samlet inn til oppgaven vår. For oss, som skriver om DS og motivasjon, har det vært spesielt interessant å se hvordan barna forholder seg til materialet. I løpet av gangene vi gikk gjennom materialet så vi tydelig at de lærte seg og huska det vi hadde jobba med fra gang til gang, og var stolte av det - noe som var veldig gøy å se. Vi har også fått erfare at barna ser ut til å like noen deler av intervensjonen bedre enn andre.

Ellers har uka vært utfordrerne med tanke på å tilnærme oss to små barn med DS, som vi ikke kjente fra før. De to guttene har vært skikkelig tøffe i møte med oss, to fremmede skjeggete voksne menn, og et helt ukjent opplegg. Både guttene og deres spesialpedagoger tok kjempegodt i mot oss!

Vi er begge relativt uerfarne når det gjelder å samle inn forskningsdata, og det er klart vi støtte på en del uforutsette skjær i sjøen. Dette var vi imidlertid forberedt på, og vi ser på det som viktig lærdom vi tar med oss videre.

Alt i alt har denne uka vært utrolig viktig for vår masteroppgave, og (tør vi påstå) for oss som fagpersoner. Blant annet har vi erfart hvor nyttig og viktig det er å kunne kommunisere med hendene (tegn-til-tale) når man møter barn med Down syndrom som har lite talespråk og er vant til denne kommunikasjonsformen. På vei hjem etter siste dag i felten snakket vi en del om hvor vanskelig utprøvingen ville vært om vi ikke hadde øvd på å bruke tegn, samt hvor håpløst det kan være for barn dersom voksne og medelever ikke tilegner seg den kommunikasjonsformen de bruker.

Det er utrolig deilig å tenke på at vi nå er et langt steg videre på veien, hva vår masteroppgave angår, og at vi har gjort verdifulle erfaringer som kommer til nytte under den videre utformingen av DSL+-materialet.

Neste skritt for vår del nå, blir å strukturere og analysere vårt datamateriale – så vi kan ikke sette oss ned å slappe av riktig ennå.

            Skrevet av Håvard Engedal og Håkon Schanke