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Self advocacy through music composition for young people with Down Syndrome

Report for the Winston Churchill Trust Memorial Trust

By Deirdre Gribbin PHD

Churchill Fellow 2013

Members of The Canadian Down Syndrome Association “Everybody is a rock star!”

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Itinerary May 2013 Canada

October/November 2013 USA

May 16 Fly London to Winnipeg

May 17-19 Canadian Down Syndrome Congress

May 20 Fly to Ottawa

May 21 Dragon Fly Arts Ottawa

Lotus Music School for Children with learning disabilities

May 22 H’Art of Ottawa Studios

May 23 Propeller Inclusive Dance Company

May 24 Holland Bloorview Kids Rehabilitation Hospital Medical Research

May 25 Holland Bloorview Spiral Garden Music Programme

May 27 Meeting with Judith Thompson playwright of ‘Rare’

(A play about and starring young adults with Down Syndrome)

May 28 Meeting with Krystal Nausbaum lead actress in ‘Rare’

May 29 Meeting with Sol Express at L’Arche de Toronto

May 30 Return to London

October 19 Fly London to San Francisco

October 21 Creative Growth Oakland

October 22 Down Syndrome Research Centre Stanford

October 23 Axis Dance Company San Francisco

October 24 Fly to Chicago

October 25 Chicago Institute of Therapies through the Arts

October 26 Chicago Northwestern University

October 28 Fly to Boston

October 29 Cape Cod Community College Project Forward

October 30 Massachusetts General Hospital Down Syndrome Clinic

October 31 Museum of Fine Arts

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Itinerary (Continued) November 1 Boston City Ballet Adaptive Dance Programme

November 2 Massachusetts Down Syndrome Congress

November 4 Train to New York City

November 6 Alliance for Inclusion in the Arts

November 7 Reelabilities New York Film Festival

November 8 Return to London

“I take a bit longer to do things” Definition of Down Syndrome, Ethan age 7. Actor with Chicken Shed Theatre

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What I am shooting for as a result of my Fellowship The aim of my Fellowship was to explore aspects of outstanding good practice in the arts with a special focus on music composition for people with Down Syndrome. I visited and interacted with organizations in Canada and the United Sates of America. The aspired long-term outcomes of this research focus on creating platforms, which encourage and enable personal empowerment through music composition for young people with Down Syndrome in the UK.

By implementing principles and structures from organizations visited on my Fellowship, I have been devising innovative programmes in specifically tailored learning hubs with facilitated supported mentoring for young adults with Down Syndrome. It is my aim to establish an environment where creative music practice inspires high level artistic outcome, encourages self-confidence and through music composition leads to a sense of automatic self-advocacy and pride in achievement.

The context for the success of this focused work straddles a number of areas. Not only did I observe and participate in music and in multi-faceted arts sessions in Canada and the US and meet and interact with visual artists, musicians, dancers and actors, I also encountered scientists, educationalists, employers, therapists and medical practitioners who specialize in pushing forward the boundaries to do with knowledge and understanding about Down Syndrome in practice and in research.

Lastly, and most importantly I met with a number of impressive self-advocates for whom having Down Syndrome holds no barriers.

Background Contemporary understanding and practice-based research relating to Down Syndrome has accelerated in the past thirty years. As a direct result of improved health care and implementation of early years physical, cognitive and educational intervention, young people with Down Syndrome are now achieving greater learning potential and have fewer health issues than their predecessors. This overall tailored intervention has meant that more young people with Down Syndrome live longer and are more fully integrated into their communities.

We are on the cusp of pushing boundaries for this population group. By developing supported programmes such as mentored intervention relating to music composition there will be increased stimulus and learned skills that can be transferable to other life skills and learning.

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What is Down Syndrome? We all have a vast web of genetic information that makes us function as human beings. Our genes are coded to connect information which tell our bodies such things as how to move, what muscles to use when we hold a spoon, what neurological signals are necessary to make us blink, what colour our eyes are and whether or not we have curly or straight hair.

As human beings we are genetically 99.9% the same, with 50% of our DNA information coming from our mother and the other coming from our father. How this generational development modifies makes us all unique. Our genes are coded in a series of source banks called chromosomes, which have specific functions and information coded within them.

Down Syndrome is a genetic anomaly determined from the moment of conception that is usually caused by an extra set of the 21st chromosome. We have two sets of chromosomes. An individual with Down Syndrome has three sets of chromosome 21, one of the genetic building blocks for us all.

So what does that mean? If we go back to the idea that gene code information signals and directs to a multitude of functions, then having an extra set of information to absorb will offset some of the predictable outcomes from genetic messaging. Processing information is inevitably different. But, it is only a fraction of the DNA profiling.

Current research is exemplifying similarities between this particular population group and the rest of the population, as well as acknowledging the differences that this extra genetic information holds. For example, people with Down Syndrome are visual learners and can be high achievers in reading the same material as their peers in mainstream education.

The fun and the serious at The Canadian Down Syndrome Conference

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Self advocacy through music composition for young people with Down Syndrome”

Facts • People with Down Syndrome generally have mild to moderate cognitive

delays, low muscle tone, varying degrees of sensory processing difficulties (For example: A low tolerance level for extreme noise, crowded spaces and chaotic environments).

• People with Down Syndrome experience a higher risk of health issues, including upper respiratory problems and heart defects. They are generally smaller than their peers. Gross and fine motor skills are delayed, including walking. But developmental milestones are achieved over a longer period of time and with intervention methods?

• Two babies with Down Syndrome are born every day in the UK. Around one in every 1,000 babies born will have Down Syndrome.

• There are 60,000 people in the UK with Down Syndrome.

• There are physical similarities between people with Down Syndrome. However, a person with Down Syndrome will always look more like his or her close family than someone else with Down Syndrome.

• The range of medical conditions and abilities can vary widely for people with Down Syndrome. Therefore individuals have their own strengths, weaknesses and talents to be unlocked.

• Like the rest of the population, a person with Down Syndrome will have their own, personality, interests, talents and will face their own challenges that are partly influenced by the extra chromosome, their unique genetics, the environment in which they live and their personal experience of the world around them.

Why compose?

Composing has given me a voice to respond to and express opinions on events in contemporary culture both sociological and political. Through writing original music whilst growing up through what is historically known as ‘The Troubles’ in 1970's-1980’s Belfast, I was able to express reactions to events there and to provoke debate through my work. At a time when political differences dominated daily lives I used composing as a tool for self-expression, escape and purpose. It was the need to offer understanding and reasoning about the conflict surrounding me which was my strongest motivator. For a Belfast teenager growing up in such an unsettled environment, writing music was a huge salve and permitted me to be a fervent part of discourse. This passion continues today and there is nothing more fulfilling than to compose and to hear one’s own music.

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On writing music Composing music provides a portal for self-expression, self-understanding and self-belief. Good foundations for artistic practice balance instinctive creativity with a knowledge about the technique that is necessary for building a musical composition. It is as important to know how to compose technically, as well as being inspired to say something meaningful.

“I must create to know myself and since self-knowledge is a never ending search, each new work is only a part answer to the question “Who am I?” Aaron Copland.1

The nuts and bolts of perfection Writing music involves a number of layers, skills and ‘tools of the trade’. In recent decades the idea that music needs to be written down in musical notation is only part of the picture. Advances in technology, specifically in music-software makes it conceivable and extremely viable for an individual with any level of intellectual ability to write their own music. By supporting exchange of knowledge and working with new technologies it is possible for a person with Down Syndrome to learn the core building blocks of composing and to capture unique imaginations.

Learning how to make decisions about defining artistic musical material can affect positive choice making in other aspects of an individuals’ life.

A significant number of young people I encounter with Down Syndrome have low self-esteem and are perceptive and aware of the limitations associated with their disability. Often this is a psychological perception and not based on actuality. Traditional teaching and mainstream education settings are good at including individuals but people with Down Syndrome are often all too aware of the gap between themselves and their peers. Therefore positive reinforcement of what can be achieved from an early age can go some way towards reducing this psychological anxiety therefore reinforcing their self-confidence.

Learning skills and decision-making in how to write, decide on content and complete a musical structure can provide a snapshot access to a completed task. We all live our daily lives moving from one task to the next. Knowing how to create a structured approach to for example, a conversation or a work task is a huge contributor to personal success and self-esteem.

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The Canadian Down Syndrome Annual Conference:

“See the ability”

Self advocate at the 2013 Canadian Down Syndrome Conference in Winnipeg

The 2013 Canadian Down Syndrome annual conference took place in Winnipeg, Manitoba in May 2013. Significantly, delegates with Down Syndrome are registered automatically as Self-Advocates.

How we describe a person has a ramification on how they present themselves. Giving delegates the title of ‘self-advocate’ on name badges as opposed to just another delegate, like myself, set the tone for the entire conference in terms of exchange. This inspired a great deal of confidence in the ‘self advocates’. There was a clear sense of ownership of conference content with individuals freely expressing their opinions on a variety of topics. I was clearly part of a supported, proactive, inclusive body of speakers

Conference topics included presentations on integration, behaviour, and the importance of music on personal growth. Keynote presentations were given by Dr Brian Skotko, medical geneticist and co-Director of the Down Syndrome Programme at Massachusetts General Hospital, actress, campaigner, and self advocate Lauren Potter who stars in the US television series GLEE, and Canadian VATTA (Voices At The Table Advocacy) Committee.

Inclusion The UK Disability Discrimination Act (DDA) aims to protect disabled people from discrimination. This Act was extended in 2005 now giving disabled people rights in the areas of employment; education; access to goods, facilities and services; buying or renting land or property and functions of

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public bodies. This important document has gone some way to encourage and support a framework for inclusion in education and in work place environments for people with disabilities in the UK with assurance that legal requirements are met. A new law came into force in the UK from September 2013 that extends the funding for education from the age of 16-25 for young adults with learning disabilities.2

Creative thinking in the workplace Sean Wiltshire, CEO of Nova Scotia based ʻAvalon Employmentʼ facilitated a day of information and strategies on Supported Employment. The company has one mandate- to assist individuals in the community to make long-term employment connections. Supported Employment provides persons with developmental disabilities an equal opportunity to find meaningful and rewarding work place positions. Individuals with Down Syndrome have an important role to play in the success of a community – whether it’s a business, school or arts community. They are entitled to equal pay for equal work. A successful supported employment environment recognizes employees’ abilities and strengths and responsibilities. Because employers need strategic support to engage with the population group that has Down Syndrome as future employees, there is a great need for the development of a supported work culture, which demystifies prejudices and fears about working beyond the perceived norm. Often employers and mainstream arts organizations want to engage but cannot find a way in which to do so. Attitudes to inclusion in the UK are positively changing, largely to do with advances in legislation but also because of the strength of self advocacy. Individuals are giving voice to their own strong opinions on their own futures. By having core knowledge of constructing, engaging with and sharing music composition with an audience, whether live or online, self-empowerment can lead to a greater engagement with the work in the arts, as creators. There are also numerous behind the scenes jobs in music to do with back stage and production that can provide suitable avenues of employment. Setting the bar high People with learning disabilities who are in employment have a strong sense of inclusion because they took risks to get to their position. This takes confidence and self-esteem, which is to be encouraged and supported fully. They develop identity with their chosen work, make social contracts, increase personal emotional growth and are part of economic integration.

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Self-esteem is the pinnacle to a series of building blocks to scaffolding achievement. Support is key. People will fail, and should be allowed to do so, but if expectations are low for young people with learning disabilities then they cannot achieve what others do for themselves. Individualized support both through creativity and practicalities in any work place situation is the key to access and control. An inclusive society, economically, socially and artistically is one that reflects the community surrounding it. Ten percent of the UK population is registered as having some form of disability. If we do not support, encourage and activate change at all levels of recognition both in the arts and generally, society will not allow this population group to be accountable. Misconceptions and lack of knowledge about up to date thinking on the potential of young adults with Down syndrome means that in the eyes of a huge chunk of the general public they remain “childlike” and are not viewed as equal.

Attending the Canadian Down Syndrome Conference May 2013 Winnipeg

Music making friendships ‘Celebrating Diversity’, the overarching theme for The Canadian Down Syndrome Conference, formed the basis for all sessions. Musician and therapist Erin Koop led a lively session with multi-level entry to participation, with a view to achieving, in a short space of time, a unified collaborative work involving a large number of participants. In this setting the focus was on equality, inclusion, empowerment and participation where music can be used to promote, maintain, and restore physical, emotional and spiritual health.

Music has nonverbal, structural and emotional qualities and can be used effectively to encourage relationship building, interaction, self-expression and personal development in a supported mentored environment. Through this session I saw how collaborative composing encourages teamwork, choice making, and respect for another’s input and opinions.

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Within a targeted framework of collaborative interaction there are a number goals, which have achievable outcomes to do with social interaction. For example, collaborative music creation can activate improved attention spans and respect for turn taking. It can promote greater awareness of the need to respond to and follow directions, promote confidence in making choices, encouragement self-control, leadership skills and positive social interaction.

All of these learnt skills from music are necessary to negotiating social interaction on a daily basis. Music can give young adults with Down Syndrome useful structure underpinning everyday actions and tasks.

Self advocates grooving together

Keynote address from actress Lauren Potter Strong focus on self-advocacy was exemplified by television star Lauren Potter’s keynote speech. Best known for her role as Becky Jackson in the television series ‘Glee’ she has harnessed media attention to highlight issues affecting people with Down Syndrome and other disabilities. Lauren features as a leading figure in the US Special Olympics on their “Spread the Word to End the ‘R’ Word”. This campaign is against the use of the derogatory term ‘retard’ in reference to members of the disabled community. In her keynote address she spoke out vehemently against bullying and its consequences. She plays a key role promoting AbilityPath.org to “Disable Bullying”. Her speech was engaging and passionate and was a wonderful example of how confidence built and inspired by the performing arts, alongside the techniques learnt as an actress, has given her the stage presence and skill to present to a room of over 500 people.

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Lauren Potter at The Canadian Down Syndrome Association Annual Conference

VATTA (The Voices at the Table Advocacy Committee)

Giving voice to people with Down Syndrome under the auspices of The Voices at the Table Advocacy Committee (VATTA) is truly inclusive and a positive indication of how Canada embraces Down Syndrome. Having a group of self advocates who meet regularly to discuss and present opinions and decisions which affect themselves seems like such a natural step for all world Down Syndrome organizations. These kinds of self advocacy inputs are not commonplace nor are the infrastructures within organizations in place.

VATTA believes that through their diversity and advocacy efforts, “equitable opportunities will be available for all Canadians”. Since 2005 members have spoken both nationally and internationally. They have successfully created a publication, ‘VOICES’ magazine, North America’s only magazine written by and for people with Down Syndrome and secured core sponsorship. Practically this means they can meet on a regular basis-Canada is a vast country! VATTA presented strong arguments and perspectives with a sense of confidence and humour, with an informed collective voice that commands utter respect. It is my hope that this report and my contact with UK based organizations can point to VATTA as a successful model for future development.

The Canadian Down Syndrome Conference motivated me to begin to consolidate and develop pertinent and relevant programme content for my work with composition. So many of the given precepts regarding technique in creating a piece of music affects decision making through a range of life issues and challenges.

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On a bleak day in May after a nail-biting take off through a hailstorm from Winnipeg, the great frontier to Canadian wilderness, home of Winnie the Pooh and, the long gone Buffalo, I arrived a few hours later in Ottawa seat of the Canadian government where the temperature was a balmy 70 degrees and thundery.

H’Art of Ottawa My first port of call was with Lin Rowsell at H’Art of Ottawa studios. What’s striking about entering the studio is the immense array of jubilant colours, reams of intriguing accomplished work and an atmosphere of almost reverential concentration where work is being carried out with obvious professionalism, flair, and conviction. H’Art of Ottawa endeavours to provide participants with intellectual disabilities a safe entrepreneurial environment where individuals are given the opportunity to reinforce and further their skills in visual arts practice and literacy. It is a professional studio, which operates on a revenue-sharing basis where artists work together to present and sell their work. Engagement with the wider community is important and a major goal goes towards presenting exhibitions and fostering strong connections with wider social and artistic networks.

Artists sharing their work

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Interview with Executive Director Lin Rowsell.3

Lin Roswell runs the studios with four other artist mentors. Its origins come from a real need for programming for adults with developmental disabilities. A full time year round accessible studio has become a major focus in the lives of Ottawa’s disabled community. It started a decade ago with a small group of artists, reaching full capacity in its first year. Currently the studios have a huge waiting list. The nature of its success has to do with the quality of the supported nurturing of work and encouragement of independent and entrepreneurial spirit. The artists are proud of their work and its monetary value is of importance to them. They know that a percentage of the studio income is ploughed back into their workspace covering costs of overheads and materials. Lin’s passion for developing creative curriculum has become a real focus to the structure of daily activities. She is constantly raising expectations and sees H’Art of Ottawa not just as a programme, but a visual art school. I discussed with Lin the importance of putting in to place a system of strong, skilled mentoring, with the best quality of materials, in this case art resources: proper paints and canvases to work with. If the energy is going into something creative let it be real. I too believe this in terms of the quality of instruments I use to work with in making group music composition. As Lin says “If you provide the opportunity, if you put it out there, they surpass”

Pointillist butterfly One of the participating artists Claire, who has Down Syndrome, shared a painting with me that she had done after seeing Patrick Stewart in a production of Hamlet on stage in the UK. Significantly, Claire was inspired by live theatre and by the intricate language of Shakespeare in an environment,

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which requires an inordinate degree of concentration and understanding. Claire did not even refer to Patrick Stewart’s better-known role from television’s Star Trek. Lotus Centre for special music education Musician Erin Parkes is the mother of a child who has autism. After unsuccessful attempts to find suitable music lessons for him, she started The Lotus Centre to meet the needs of those with learning disabilities in the community. The Centre works with students from age two to adult.

Referring to their programmes as ‘alternative music’, each is tailor-made for the individual and taught strategically in either individual or in group settings. I spent a day at the centre in Ottawa participating in both group lessons and, observing individual music lessons. Much of the content of the group work is based on aspects of shared percussion: rhythm and drumming, movement and shape and free use of voice. Amongst staff there was an impressive detailed knowledge about each participants’ form of intellectual disability and an informed knowledge on how to work successfully with each individual. Lotus Centre, although not a music therapy centre, works closely with an occupational therapist whose support to staff is unique and invaluable. Later in my Fellowship I saw a similar kind of partnership where arts practitioners work alongside therapists. At Boston City Ballet a choreographer and physiotherapist work together on a programme for young people with Down Syndrome.

Programmes are not only tailored to targeted music development but also respond to the ‘sensory’ needs of the child. By giving the individual specific goals for learning in a non-school environment with defined thresholds of safe sensory perception participants are able to develop self-esteem and social interaction in a customized supported environment where they feel able to take risks and feel safe.

Dandelion Arts and Propeller Dance Two of the mainstays of inclusive dance practice in Ottawa are Dandelion Arts and Propeller Dance. Both are interlinked by Jessie Hugget, a professional dancer with Down Syndrome who is now part of Propeller Dance and who trained as a child with Hanna Beech at Dandelion Arts.

Like composing, dance gives people a forum for self-expression in a personal way. Engagement with movement is often spontaneous and movement allows people to be in the moment and to share what they are feeling. Often individuals with intellectual disabilities find it difficult to express their feelings through conventional language communication.

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As in composing, dance provides an alternative way of being involved. This in turn leads to a greater understanding and acceptance of one’s self and is a bridge to an equal learning experience.

Members of Propeller Dance in rehearsal

I met with Hannah Beech to talk about her work. She has created a set of publications called ‘I can Dance’. 4

On each page, a child with a disability and a child without are both featured. Her works focus on how interpretive dance can be used in a supported programme to help individuals learn through many aspects of development both physically and intellectually. One of the core themes of her work stresses that students be given the responsibility to manage themselves and their work and to both be respectful of others and learn to appreciate the diversity of what others have to offer.

Interview with Renata Soutter Artistic Director of Propeller Dance.5

Sharing artistic vision with co-founder Shara Weaver, Renata Soutter spoke strongly about the company’s manifesto. Propeller Dance believes that access to culture is a basic human right. They strive to affect change of perceptions. We talked about the need to ask “Who is it meaningful for?”

The company began out of a much needed intervention programme in a school setting for young pupils with Down Syndrome who were not being taken seriously as learners. This was largely to do with preconceived ideas about what could be achieved. Renate’s philosophy encouraged staff to “take another look”. Using interventionist educational tools she retrained staff by implementing strategies overlapping between learning and movement.

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Effectively she set about building structures around the family and helping the school realize that family support played an important partnership role in supported learning.

The language that people use is the language of the moment. By intervening, and devising a series of materials to support academic learning to encourage for example cross-body right left balance and gross and fine motor movement, the language used by those around the child changed. The support team’s newly acquired skills motivated a greater understanding about the needs of the child and brokered effective communication change. The child’s educational goals were met and movement facilitated integration successfully.

The main goal of Propeller Dance is to create innovative, integrated dance works, which reflect contemporary issues. There are seven professional dancers who rehearse year round and are paid professional rates. The company engages in outreach work, which questions inclusion and which gives strong role model examples of successful integrated arts practice to groups of young people including those with disabilities. “Disability is understood as a difference in human experience rather than a limitation, something to overcome or lack of ability. We define virtuosity as the ability to move an audience, through presence, connection, human spirit, as well as physicality.”

Propeller Dance Company mainfesto.6

Propelling Dance forward through inclusion

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Toronto

Holland Bloorview Kids Rehabilitation Hospital and Spiral Garden Advances in medical research and therapeutic contexts for the use of the arts have been increasing in recent decades. My first visit in Toronto straddled both the world of art and medicine. Holland Bloorview Kids Rehabilitation Hospital (HBKRH) and attached Spiral Garden work closely with a holistic view to the arts to treat children both with standard medical applications using music and art to counteract the negative associations of pain.

I met with an interdisciplinary research team at HBKRH, who have been testing the effectiveness of engagement with the arts through created media devices for children who experience a range of acute medical conditions and who require repeated painful procedures. Many of these children are aware of their exposure to pain and its effect on their daily lives. As a consequence their self-esteem is low. Making music and engaging with art and movement provide key support to their daily equilibrium.

Adjacent to the hospital building is a tranquil landscape space attached to a multi-disciplined therapy centre, which is known as ‘Spiral Garden’. It is fully accessible and features a beautiful, reassuring space built from natural materials.

Patients attending clinic over a number of years build a strong bond with the centre and it is very much owned by them.

This is unlike any pediatric and adolescent hospital space in the UK and is a paradigm of the potential of excellence in thinking about healthcare, mindfulness and engagement with art and music as one. It also points to the potential for using music as a tool for personal growth from moments of extreme adversity in an inspired environment.

The Spiral Garden

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RARE

A play about and starring nine actors with Down Syndrome “RARE had 22 performances and there isn’t a week that goes by that someone doesn’t stop Krystal in the street and tell her how moved they were by the play.” Madeleine Greery, Krystal’s mum and television presenter.

RARE is a company formed to present a number of plays with challenging social issues. In this case RARE presents a collaborative play based on the stories and accounts of real life experiences of nine actors with Down Syndrome and crafted by renowned Canadian playwright Judith Thompson.

Actress Krystal Nausbaum with playwright Judith Thompson

It is a raw and provocative play, which has particular resonance for my work because it challenges public assumptions and gives voice to a group of young professionals who under the mentorship and leadership of a skilled playwright are able to hone their stories into a structured performance piece. It is important that mentorship of the highest quality is available to this population group. Access to professional mentorship should always be given from a technically accomplished source so that young people with Down Syndrome working in the arts have the opportunity of integrating skills from the highest level.

In RARE, the cast shares poignantly what makes them angry, who they love and what they would tell prospective parents who find out they are carrying a child with Down Syndrome. They are black, white, gay, straight and telling us uncompromisingly about what they want.

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Judith Thompson talked about living near young actress Krystal Nausbaum, watching her growing up, walking her dog, wearing funky clothes and dyeing her hair like most teenagers. Acting from a young age she was a cast in Emmy Award nominated ‘The Memory Keepers Daughter’, a Lifetime Network film for television with Emily Watson. Thompson asked her if she wanted to star in a play featuring actors with the chromosomal condition. She talked about what she called her mandate as a playwright “…to earn the privilege to help give voice to those who don't have much of a voice, or any…."

Judith talked about living near young actress Krystal Nausbaum, watching her growing up, walking her dog, wearing funky clothes and dyeing her hair like most teenagers. Acting from a young age she was a cast in Emmy Award nominated ‘The Memory Keepers Daughter’, a Lifetime Network film for television with Emily Watson. Thompson asked her if she wanted to star in a play featuring actors with the chromosomal condition. She talked about what she called her mandate as a playwright “…to earn the privilege to help give voice to those who don't have much of a voice, or any…."

Members of the cast of RARE in rehearsal

Meeting Krystal was a joy. Because of her experience in engaging with audiences through acting and outreach work, Krystal has true composure. She told me she had a New York agent and a personal dresser. Here was someone who really knew herself, who wasn’t loud or overbearing but whose quiet confidence commands strong presence. She talked passionately about how important it was for her voice to be heard on stage in RARE. “ It is very emotional but really great when we're performing our personal stories onstage and having the audience really knowing what we're facing in life, having Down Syndrome”

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October San Francisco I arrived for the second part of my fellowship in October after a long haul flight from London to a disgruntled San Francisco in the midst of a major transport strike. The Bay Area Rapid Transport system BART is the lifeline of the city and I had a glimpse of the chaos that it caused especially for people with physical and intellectual disabilities. Routine is an important part of daily life.

Creative Growth Studios

I painstakingly negotiated my way across San Francisco bay to Oakland to visit Creative Growth Studios, normally a short hop on the BART, now a long bus ride over the bridge through gridlock.

Artists at Creative Growth Studios

I made it and stepped into a huge creative space where over 140 artists work on commissions with a view to selling them in the gallery shop next door. Creative Growth runs a similar stakeholder plan in regard to income and support as H’Art of Ottawa does, where artists share in the income revenue of the work. The studios however are run on a much larger more international scale. The director was in fact at Frieze Art Fair in London during my visit.

Meeting with the Assistant Director Fatima Reyes. We discussed how the programme provides a professional art studio setting and facilitation in

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drawing, painting, video production, ceramics, mosaics, wood, fiber arts, textiles, printmaking and photography. Artists develop a working portfolio and engage with the public through sales of their work in the studio shop or at international art fairs and exhibitions. There were some wonderful specially commissioned, limited edition rugs being made to order. The term commissioned work adds a perceived degree of professionalism to making art. Artists are paid an hourly rate for their rug-making skills, which enhances personal self-growth and pride, important markers of professionalism and self-validation.

Creative Growth Studios limited edition commissioned rug

Stanford Centre for Down Syndrome Research

As well as exploring inclusive music, arts and social practice, an important strand to my research has to do with understanding and integrating cutting edge medical research into my work. The primary goals of the Stanford Centre for Down Syndrome Research are:

• Promote clinical and basic research programmes to understand the underlying causes of learning and communication disabilities in people with Down Syndrome.

• Develop pharmaceutical and behavioral therapies for individuals full stop

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• Offer clinical programmes for individuals with Down Syndrome and

their families.

• Plan and carry out clinical trials of promising therapies that can improve

the lives of individuals with Down Syndrome and their families. Interview with Dr Craig Heller 7

Dr Heller is a professor at Stanford University and he runs the Stanford University Centre for Down Syndrome research. We discussed his work with specific reference to drug therapies that are being developed to treat people with Down Syndrome. Trials are taking place at Stanford’s research team in Australia with a drug that has been on the market for over forty years but has not been used for treating people with Down Syndrome in a controlled study until now. So far trials have consistently shown restored learning and memory capacity. This enables individuals to process, evaluate and comprehend larger chunks of information. For example speech development has improved, as has the ability to problem solve and rationalize decision-making. Conclusions from results of this trial could change lives in the very near future, as the way forward in effectively improving memory and independent life for people with Down Syndrome. Understanding improvements in cognition, coordination and memory in these areas could revolutionize lives of people with Down Syndrome. Improved cognition and memory means that integration into independent life will be easier. The stimulus and development of cognitive thought through writing music combined with the intervention of specific medication could have powerful positive long-term effect on individuals’ lives.

Stanford University

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Chicago

Leaving the warmth of the west coast I caught a plane to Chicago. The ‘windy city’ was bursting with spectacular Autumnal splendour. There I met with leading researchers working with the effect of music on the brain.

Music Institute of Chicago Institute of therapy through arts

A principle aim of the organization is to create the conditions whereby the arts and inclusion in art-making experiences is accessible to everyone regardless of psychological, physical, developmental or socio-economic barriers. Interview with Institute Director Jenni Rook.8

Jenni Rook’s approach to tailored support of an individual through a music therapy package that is reviewed and evaluated on a long-term basis has resonance for my way of teaching composition to young adults with Down Syndrome. This is because quantifying and measuring success through achieving set goals and finding strategies to negotiate these achievements can have not only a therapeutic impact, but a positive confidence boost in the skills involved in choice making. We discussed the long-term effects which music has on cognitive learning. Neurologically, music can help open channels for the development of communication skills, speech articulation and reciprocal communication skills and can help an individual to self-manage their own behaviour, which has a huge implication for a person’s ability to integrate into mainstream education and work settings. If it is pitched at the right level, using percussion or piano, an individual is never set up to experience feelings of failure. Music can be used for positive social skill building. Rhythm processes stimulate deeper levels of cognitive thinking in the brain. Being able to sequence rhythm and to use left right cross body coordination can lead to advanced problem solving and independent thinking. On so many levels interacting with music unlocks many crucial developmental building blocks both practically and conceptually. Interview with Keith Whipple: Expressing emotions. Finding what the right choices are.9 Keith Whipple is a drama therapist. His work is based on social and emotional interactions between individuals. He compared his improvisational approach to the approach taken to compose a piece of music wherein one has to find the skills to integrate instruments, question whether or not they work together, and question who takes the lead. Meeting weekly groups experiment building improvisations. By presenting improvisation as something that happens in the workplace with professional

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business people, the participants are more open to accepting the practice, because they can identify with the status of association. I would like to recount what Keith said: “What is the voice? What is the sound of different emotions? How do they rise and fall? What is it to blend two different emotions together, to feel happy and sad at the same time? Keith begins his work with this abstract way of working, first establishing the voice as an emotional tool, a sound provider without words, then associating sound with a particular place which then triggers memory and, other associative personal experiences are brought to the piece. With the addition of words a pulse and rhythm can be established. Acting out emotions in a group setting is a safe way to play with imperfections because the emotions, which are being manipulated and transformed, are part of the stage character rather than the person behind the character. It allows an individual to have personal growth and self-reflection without any negative attachment to the emotional state. This provides a backbone for self-development and learning of new skills. Often young people with Down Syndrome feel criticized for making choices. This can undermine their ability to feel that they can contribute their voice to a situation. Creating music and theatre pieces which examine emotional states and which debate the potential of defining and making good choices endorses the idea of social interaction as a key personal skill.

Downtown Chicago

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Northwestern University School of Communication. Department of Communication, Sciences and Disorders

Interview with Neuroscientist Nina Kraus.10

Dr Nina Kraus investigates the neurobiology underlying speech and music perception and learning-associated brain plasticity. She is a pioneering thinker who bridges multiple disciplines exploring the effects of music on development, literacy, and learning.

Nina Krauss and I discussed the impact of music on memory both long-term and short-term memory. She talked about trying to isolate sounds and to work on focusing on improving sound in busy, noisy environments. By focusing on improving this listening skill, individuals with Down Syndrome are able to develop longer concentration spans and greater periods of communal involvement with group work, which are vital to collective music sharing experiences.

We discussed using music attached to words to promote levels of cognition. Nina cited the example of how music can reactivate parts of memory and brain function when other traditional communication channels are closed. In the case of playing familiar music to an older person with dementia, music can bring an individual back to the world, which is reassuring for them and those around them.

Like other areas of artistic learning such as abstract visual art, sculpting, or character development in acting, introducing the concept of thinking symbolically can accelerate life-learning skills because of the processes necessary to tie together apparently disparate information in a coherent order. This concept is a transferable skill. This skill is important for negotiating the world around us and for making sense of it on more than just the immediate level.

Boston

In the year that Boston experienced tragedy around the Boston Marathon bombings I was there when they won The Baseball World Series at home for the first time in nearly a century, and Boston was “Boston Strong”. The city was full of positivity, graciousness, hope and reconciliation. It was a powerful atmosphere to be a part of.

Cape Cod Community College

I took an early morning bus through misty Massachusetts for Hyannis in Cape Cod. ‘Project Forward’ is a vocational training skills program for students with learning disabilities. The course aims to encourage students with disabilities to develop employment skills and become responsible learners.

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• Build vocational skills for increased independent living

• Improve communications skills

• Improve self-awareness and self-advocacy skills

• Relate to others in constructive ways • Demonstrate motivation toward work to improve self-esteem

‘Project Forward’ has been nationally recognized by the United States Department of Education and The School-to-Work Outreach Project as an exemplary school-to-work model, serving students with disabilities since 1988.

Interview with Peter Daley Director and Joanne McCarthy Senior Academic Advisor.11 I spoke with Peter Daley and Joanne McCarthy about course content, and the aspirations of the students. A key part of student life, as it is for all students, is the chance to have the same social opportunities that other young adults have at college level. Project Forward offers a series of blocks of vocational training with the greatest emphasis on the hospitability business and animal welfare. There are also emerging music and theatre programmes. Although entry to this course has a separate application process, students who are able are offered the chance to enroll in credit earning college courses. Learning is a process of building skills and understanding for independent living. Accommodation structure is vital to the successful support mechanism behind college life. Students live in small group, shared apartments and are visited once a day by a mentor who ensures that all practicalities are taken care of such as paying the bills.

Project Forward has employed six graduates so far from their programme. They teach on life skills and Information Technology courses to new undergraduates, a wonderful example of strong peer modeling. The college also has strong links with the Hyannis business community. The hospitality profession employs a number of graduates. Many entrepreneurial graduates also make art, cards and candles to sell to tourists during the summer season. I met a young man with Down Syndrome who was a candle maker. He sells two hundred candles per week, running the business alongside his father for whom candle making was also new.

Learning skills that focus on motivation promote a strong sense of self-belief. Meeting this student who was able to support himself through his excellent business idea was the greatest affirmation of the success of Project Forward.

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Pastry chef with Down Syndrome employed in the college cafe

Down Syndrome Programme at Massachusetts General Hospital

Massachusetts General Hospital provides a unique multidisciplinary approach to health and well being for people with Down Syndrome. Community appropriate interventions mark developmental stages from children to adults, all within one-clinic setting. This is a unique health care approach.

Programmes are provided in healthcare, research, and education that contribute to a world in which all people with Down Syndrome are accepted, celebrated and have the opportunity to fully realize their potential.

Interview with Programme Director Dr Brian Skotko

Brian Skotko is the Director of the Down Syndrome Program at Massachusetts General Hospital. He has directed his professional energies toward children with cognitive and development disabilities. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome. I first met Brian after his entertaining keynote speech at The Canadian Down Syndrome Conference in Winnipeg at the start of my fellowship journey. He spoke experientially as a physician, author, clinical researcher and as a sibling- his sister has Down Syndrome. I caught up with him again in Boston where I visited the team in his clinic and we spoke about the effectiveness of this multidisciplinary approach to health care, behaviour and research. This level of joined up thinking makes for clearer personal pathways for patients where all aspects of an individual are taken on board as plans are mapped and developed. The public engagement officer who greeted me at the clinic is employed by the hospital. He has Down Syndrome.

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Brian Skotko is also a remarkable advocate for the Down Syndrome community. In 2011 GQ Magazine published an article reviewing fashion in the United States titled “40 Worst-Dressed Cities in America” describing Boston as number one saying “Due to so much local inbreeding, Boston suffers from a kind of style Down Syndrome, where a little extra ends up ruining everything.” 12 His passionate and humourous response through Twitter and Facebook saying Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants...But, whatever you do, do not mess with my sister.” 13 commanded National news coverage and engendered debate. Brian has pledged to continue to wear his crazy coloured trousers at all major public events and to speak critically about the publication until GQ Magazine makes a formal apology for including this article. They have yet to do so. Here is Brain Skotko wearing none other than Boston Green!

Dr Brian Skotko centre with actress Lauren Potter

Museum of Fine Arts, Boston. Artful Healing Programme

The MFA publish a guide ‘Be Yourself, Say Hello!’ for staff to use to help them welcome visitors with both physical and learning disabilities. There is a clearly focused implementation of inclusive practice within the MFA and enhances awareness amongst staff. This positivity and acceptance of difference encourages people with disabilities also to be themselves in an environment where they are welcomed.

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Interview with Programme Director, Dorothee Perrin.14

The Programme ‘Beyond the Spectrum’ for children with learning disabilities runs once a month. It is an activity-based session where studio work is then followed up by a tour of selected art works from the collection. Parents and participants are sent the outline of a ’social story’ in advance to enable home preparation. This leads to more purposeful and meaningful understanding of the work. It also means that the idea of participating in public art spaces is engendered from an early age endorsing positive inclusion.

Boston City Ballet Adaptive Dance Adaptive Dance offers classes for children and young-adults with Down Syndrome at the Boston Ballet's studios. Adaptive Dance is designed to foster a love of dance and creative expression for individuals with Down Syndrome.

The aims of the programme include:

• Increased pride and self-confidence • Greater understanding of music and response to rhythm • Cooperation and working with peers • Following directions • Increased focus • Improved balance, posture, and alignment

Adaptive Dance Programme. Students at the bar

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Interview with Portia Abernathy Programme Manager.15

The idea for this programme came from a direct health need. Physiotherapist Mickey Casella approached Boston City Ballet to develop a programme for young people with Down Syndrome to improve their low muscle tone and build strength and coordination. From a small pilot project the programme now employs 4 full time choreographers in 3 separate locations in the Boston area.

I watched a dance class at 8am on Saturday morning. Led by choreographer Luciano Aimar, director of the children’s programme, this was a rigorous and demanding class. There was a sense of fun, some minor concentration loss, but for the most part participants carried themselves as young professionals with poise, focus and confidence. Programme leader Luciano Aimar writes the children’s dance curriculum for Boston schools. He shapes Adaptive Dance to reflect the aims of his schools programme. Consequently the bar is high. These young people with Down Syndrome rise to it.

Massachusetts Down Syndrome Congress Meeting with Executive Director Maureen Gallagher, Family Support officer Sarah Cullen and self advocacy specialist John Arden.16

I met with key members of the Massachusetts Down Syndrome Congress to discuss the role of self-advocacy. It was particularly important in this setting because John Arden, who works for the Congress, also works part-time at the Senate in Washington. He is currently co-writing the legislation to do with the proposal behind Real Lives Bill for the State of Massachusetts.

John is an articulate individual. He talked about how he has been lobbying for change within the Real Lives Bill so that adults with learning disabilities can control their own financial package. He told me that he is already doing so and using this income strand to employ a personal assistant who helps him with independent living, a cleaner, and a personal trainer. I asked John if he would like the opportunity to compose. He replied, “ Yes. We should be putting what we have to say, our words into music.”

Deirdre Gribbin with Maureen Gallagher, John Arden and Sarah Cullen

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An early train journey through the colourful Autumnal trees of New England and a few hours later I was in the bustling Penn Station in New York City.

Alliance for Inclusion in the Arts In the midst of the teeming frazzle of Time Square, I visited Alliance for Inclusion in the Arts. I wanted to meet with this organization because of their direct experience with promoting visibility and inclusion in all forms of media and live theatre and to find out exactly how far or not the US had come in changing attitudes to inclusion for members of the disabled population.

Meeting with Christine Bruno, disability advocate and David Hallam, disability-programming associate. 17

“… To achieve a theatre, film, and television industry that reflects American society; where each artist is considered on his/her merits as an individual; where the stories being told are drawn from diverse experiences; and where our individual humanity and forms of expression can be celebrated.”

Alliance for Inclusion in the Arts. Manifesto 18

Both Christine Bruno and David Hallam are actors and we discussed the realities of working in the industry. Both agreed that there is now more visible representation in film and television because of the sheer volume of output but that theatre has not yet made that commitment to employing actors with disabilities as often as they could.

There is no representation on Broadway even when there are disabled roles being played. Alliance for inclusion in the Arts successfully changed protocol on the auditioning process whereby if there is a role in a play for an actor with a disability then the producers must audition disabled actors as well as non- disabled actors. However, producers are not bound to employ a disabled actor for the role because the Screenwriters Guild and American Actor’s Equity argue that this is discrimination against non-disabled actors and actor musicians.

New York Reelabilities Film Festival

Interview with Ravit Turjeman and Isaac Zablocki. Directors Reelabilities.19

My final Fellowship meeting was on the Upper West Side, with ReelAbilities, a New York based Film Festival, and the largest film festival in the United States dedicated to promoting awareness of the lives, stories and artistic expressions of people with different disabilities.

It began in New York in 2007 and has now spread across the US. It presents films by and about people with disabilities in multiple locations throughout each hosting city and I have been seeking and watching many of these films.

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I was interested in discussing the impact on the audience who attend the post-screening discussions and events. This very specialized festival has become an annual event in the New York City arts Calendar. It has developed a strong following, with audience members returning each year with the expectation of being challenged by what they see and hear. Hosted events bring together the community to explore, discuss, embrace, and celebrate the diversity of shared human experience.

I am inspired and intrigued to see so much engagement by people with learning disabilities who are making, directing and acting in their own films. I hope that I can translate this kind of positive participation and energy into the work I am doing with young people with Down Syndrome and inspire them to find a similar platform for sharing their own music with an audience with such impact.

Actors form Chicken Shed Theatre London with Ethan Stein, my son (centre)

Conclusion

By exploring such a huge spectrum of thought and practice in the area of my research from visual arts programmes in Ottawa and San Francisco to science and music in Chicago- from medical intervention in Toronto and Boston to examining aspects of social awareness in Winnipeg, and New York, I come away with a uniquely comprehensive overview about programmes in Canada and the United States which are progressing the possibilities and opportunities within the world of Down Syndrome. There are exciting advances in knowledge-based research and practice and huge changes in attitude to what is possible.

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Establishing programmes in the UK where young people with Down Syndrome can learn the skills to compose their own original music in a supported, progressive environment will provide them with another option for self-exploration and confidence building and help them find their own, authentic voice within the world around them.

Outcomes

I have begun programming a series of composing classes in the UK for children with Down Syndrome from the age 8 years. These will run weekly for a year as a pilot project with objectives and evaluative measurable outcomes with a view to rolling it out as a National programme. I am also developing a summer school at Trinity Laban Conservatoire of Music and Dance. As a result of contacts made during my Winston Churchill Fellowship, I will be returning to Canada as part of a Leverhulme Overseas Fellowship to implement and develop a programme on self advocacy and music in an interactive waiting space at Bloorview Kids Rehabilitation Hospital in Toronto. Many of the concepts and infrastructure successes I have seen during my Fellowship will become a part of my core thinking as I develop mechanisms and programmes using music composition as a means of promoting confidence and self-advocacy with the Down Syndrome community and beyond, encompassing all those who have learning disabilities.

As a result of the knowledge I have garnered, I will also be a strong advocate for increasing opportunities for those with Down Syndrome and learning disabilities and will actively seek high profile opportunities to inform, debate and advise on programmes and policies nationally and internationally.

On the 10 March 2014 I was asked to speak before the EU Innovation Convention sponsored by the President of the EU, Jose Manuel Barroso about many of the issues that I have explored during my Winston Churchill Fellowship. I will actively seek opportunities to speak in front of policy-makers, decision-makers within the global business community, and within academic circles about ways they can be part of a supportive infrastructure through visionary programmes with music creation at its heart.

Music is a universal language. By its very nature it promotes equality. Anyone can have access to music on any level. Now it is time for the role of creative music making and performance to be a way of exemplifying real equality, inclusion, empowerment and self advocacy for people with Down Syndrome for whom finding a voice can be challenging. I want them to feel that tremendous sense of self when they hear their own work and be able to say “Yes, Listen to me, I wrote that.”

Deirdre Gribbin www.deirdregribbin.co.uk

Winston Churchill Fellow 2013

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Acknowledgements

I would like to thank the Winston Churchill Memorial Trust for giving me the time to think freely and creatively.

Thanks also to Portia Abernathy, Luciano Aimar, John Arden, Hannah Beech, Christine Bruno, Sarah Cullen, Peter Daley, Jordan DeStaebler. Maureen Gallagher, Madeleine Greey, Corrine Grieve, David Hallam, John Haydon, Dr Craig Heller, Dr Nina Krauss, Joanne Mc Carthy, Patricia Mc Keever, Krystal Nausbaum, Dean Barbara O Keefe, Erin Parkes, Dorothee Perrin, Fatima Reyes, Jenni Rook, Lin Rowsell, Brian Skotko, Judith Smith, Renata Soutter, Lou Stein, Brenda Surminski, Trinity Laban Conservatoire of Music and Dance, Judith Thompson, Erin Toop, Ravit Turjeman, Keith Whipple, Sean Wiltshire. Isaac Zablocki.

To everyone else who helped contribute to make this happen.

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References 1. Schwartz, Elliot Childs Barney, Fox Jim. Contemporary Composers on

Contemporary Music. New York: Da Capo Press 1978

2. Hubble, Sue. Support for Students with learning difficulties and disabilities in

post-16 education in England. UK:House of Commons Green Paper 5 July 2012

3. Gribbin, Deirdre. Interview with Lin Roswell from an original transcript May 2013

4. Beech, Hannah. I Can Dance.hanahbeech.com 2013

5. Gribbin, Deirdre. Interview with Renata Soutter from an original transcript May

2013

6. http:// propellerdance.com (Manifesto)

7. Gribbin, Deirdre. Interview with Dr Craig Heller from an original transcript October

2013

8. Gribbin, Deirdre. Interview with Jenni Rook from an original transcript October

2013

9. Gribbin, Deirdre. Interview with Keith Whipple from an original transcript October

2013

10. Gribbin, Deirdre. Interview with Dr Nina Krauss from an original transcript

October 2013

11. Gribbin, Deirdre. Interview with Peter Daley and Joanna McCarthy from an

original transcript October 2013

12. Thompson, John “Style Down Syndrome” . New York GQ Magazine US Edition

July 2011

13. http://children’s hosptalblog.org/mock-my-pants-not-my-sister/ Skotko, Brian July

2011

14. Gribbin, Deirdre. Interview with Dorothee Perrin from an original transcript

November 2013

15. Gribbin, Deirdre. Interview with Portia Abernathy from an original transcript

November 2013

16. Gribbin, Deirdre. Interview with Maureen Gallagher, John Arden ad Sarah Cullen

from an original transcript November 2013

17. Gribbin, Deirdre. Interview with Christine Bruno and David Hallam from an

original transcript November 2013

18. http:// inclusioninthearts.org (Manifesto)

19. Gribbin, Deirdre. Interview with Ravit Turjeman and Isaac Zablocki from an

original transcript November 2013

Copyright Deirdre Gribbin March 2014

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