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We are able to make music together! Workshops with musicians with severe disabilities

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Abstract

Social isolation, inequality and poverty are frequently understood as secondary consequences of different disabilities. People with severe disabilities usually experience various direct and indirect forms of social exclusion that also affect their family-members. Their participation is extremely challenging since it seems difficult to involve them in any kind of social activity. The present article describes the methodology of disability-awareness workshops in which musicians with severe disabilities play together with other workshop participants. The aim of these workshops is to involve participants without disabilities in fruitful mutual cooperation with adults with severe disabilities. It is essential to prepare people when they first meet individuals with severe disabilities. During the workshops participants are prepared for the encounter as it is crucial to overcome the embarrassment that many experience when meeting people with disabilities. The Consonante Method allows individuals with limited intellectual and motor skills as well as people without previous musical training to experience the joy of active participation in a music performance. Shared music can be a platform for socialization through a joyful activity. The community building power of music allows participants to experience joy, community, equality and mutuality. These well-prepared encounters promote mutual understanding and thus can serve as a positive model for inclusion. Keywords: social inclusion, methodology, workshop, people with severe disabilities, music
Weareabletomakemusictogether!Workshopswith
musicianswithseveredisabilities
______________________________________________________________________
Luca Tiszai
University of Szeged Juhász Gyula Faculty of Education
Institute of Special Needs Education
Szent Erzsébet Home, Ipolytölgyes, Hungary
Abstract
Social isolation, inequality and poverty are frequently understood as secondary
consequences of different disabilities. People with severe disabilities usually experience
various direct and indirect forms of social exclusion that also affect their family-members.
Their participation is extremely challenging since it seems difficult to involve them in any
kind of social activity. The present article describes the methodology of disability-
awareness workshops in which musicians with severe disabilities play together with
other workshop participants. The aim of these workshops is to involve participants
without disabilities in fruitful mutual cooperation with adults with severe disabilities. It is
essential to prepare people when they first meet individuals with severe disabilities.
During the workshops participants are prepared for the encounter as it is crucial to
overcome the embarrassment that many experience when meeting people with
disabilities. The Consonante Method allows individuals with limited intellectual and motor
skills as well as people without previous musical training to experience the joy of active
participation in a music performance. Shared music can be a platform for socialization
through a joyful activity. The community building power of music allows participants to
experience joy, community, equality and mutuality. These well-prepared encounters
promote mutual understanding and thus can serve as a positive model for inclusion.
Keywords: social inclusion, methodology, workshop, people with severe disabilities,
music
Musical performances of a minority group facilitate social actions and promote social
recognition and empowerment. Consequently, they enhance the participants’ status
through the valued activity of music. People with severe disabilities are frequently
regarded as voiceless people or a minority within a minority group. (Faivre, Meeus,
Menzel & Parent, 2000). Shared music can be a powerful tool for social inclusion. Firstly,
the responsibility associated with being a part of a performing group develops the social
skills of the participants. Secondly, the concerts have a deep impact on the audience,
thus having the power to break down psychological, attitudinal and social barriers. The
workshops based on shared music support positive personal encounters in which
members can share a common and joyful activity. Participants can experience a new
sense of equality and mutuality as a starting point for social inclusion.
Corresponding author: Luca Tiszai (tiszailuca@jgypk.szte.hu)
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People with severe disabilities
The definition of severe disabilities is not homogeneous in the literature. The present
study uses the term people with severe disabilities and focuses on individuals requiring
extensive ongoing support in more than one major life activity in order to participate in
integrated community settings. Most of these people are limited in their ability to
communicate and they often have medical conditions or physical limitations that affect
their movement, vision or hearing. They can also be described as people with profound
and multiple disabilities. By focusing on the complex, ongoing support needs they have
in every aspect of their lives – including health, physical and social care and educational
services – they can be seen as persons with major dependency needs or with complex
needs.
The common characteristics of the core members of the described project are the
following: innate severe intellectual disability, lack of verbal communication and
dysfunction in motor skills. In addition, some also have additional sensory impairments,
complex health needs or mental health conditions and they need support in all the
essential activities of daily living.
The basic concept behind this model of social inclusion is based on the theory of
Universal Design (UD), which is a paradigm and also a practical approach, in which
“people of all abilities are included in the intended population of users of a product or
environment” (Joines, 2009).
Correlation between severe disabilities, social exclusion, poverty and
powerlessness
Social isolation, inequality and poverty are frequently mentioned as secondary
consequences of different disabilities. People with severe disabilities, as the most
vulnerable members of this minority group, usually experience a variety of direct and
indirect forms of social exclusion. The inter-relational dynamics of disability, poverty and
inequality are worldwide reported regardless of social, economic and cultural differences
(Mencap, 2001; Bass, 2008; Kálmán 2004; Grut & Ingstad, 2006; Van Kampen, Van
Zijverden, & Emmett,2008; Groce et. Al., 2011). The two main causes that lead to
poverty are the reduced income of the family and the increased consumption level of the
household caused by the special needs of the family member with disabilities. The direct
costs involve medical treatment, travel expenses, special nutrition or dietary
supplements and a wide range of special equipment. Furthermore, many of these
families have to pay for social or support services. The majority of indirect costs are
associated with the provision of care. People with severe disabilities need assistance in
almost every aspect of their lives, which usually means 24-hour intensive support and
care. Research shows that only a minority of these families chooses institutional care or
pay for different nursing services at home. The overall trend is that the mother stops
working and stays at home with the child. (Mencap, 2001; Bass, 2008; Kálmán, 2004;
Dobson, Middleton, & Beardsworth, 2001; Reichman, Corman, & Noonan, 2008;
Schädler, Rohrmann, & Schür, 2008; Stabile & Allin, 2012). The tasks of housekeeping
and providing personal care are estimated to be equal to the work of 4.5 full time paid
employees (Brown, 2004).
In addition to the lower income, this situation leads to social isolation, which restructures
the life of the whole family, having an impact on relationships within the family, with
friends, and within the community. The family members have to cope with the
continuous responsibility of care, so they have less time for socializing. Friends usually
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stop visiting, which reinforces their isolation and they remain locked away in their homes.
Moreover, it is always a serious decision to go out with the disabled child. The
organization Contact a Family (2011) conducted an on-line survey involving families
caring for children with any kind of disability. The final document based on the collected
data states that:
Families with disabled children experience isolation in different ways: a lack of
social interaction due to difficulties in work and not having time or money to do
family activities others take for granted; a fear of how people will react when they
go out with their child; and a feeling of being alone, even when they are
surrounded by people, because no one else shares their experience. The results
of our survey show that social isolation is having a devastating impact on the
mental health of many families with disabled children. It is also causing family
breakdown and restricting access to employment opportunities. (Contact a
Family, 2011)
This closed form of life worsens the disadvantages of the physical disability causing
secondary behavioural and psychiatric problems at an individual level and affecting the
personal lives of family members and the physical and mental health as well as the day-
to-day life of the family as a whole (Brown, 2004). Society offers more possibilities and
community services show sympathy towards these individuals in their childhood, but as
they grow up, social tolerance decreases and the family receives less support from their
environment. By the time they children reach adulthood their families become isolated
and poor.
These multidimensional factors of poverty and isolation are multiplied and accumulated
in the case of people with severe disabilities and their families. The devastating
consequences of social exclusion are experienced at individual, household and
community levels. In the light of international research it is clearly proved that people
with disabilities are the poorest and most marginalized subpopulation in low and middle-
income countries. (WHO & World Bank, 2011; Groce et. al., 2011; Palmer, 2013). A
comparative study in a representative sample of twelve European countries summarizes
that “people with severe disabilities and/or with complex needs and their families are at
risk of discrimination in almost all areas of life. They are mostly not considered in policy
development and implementation at local, regional, national and European level.”
(Schädler, Rohrmann, & Schür. 2008, p. 134).
The result of the social marginalization and radical decrease in the socio-economic
status of these families is vulnerability and powerlessness. Parents perceive and
interpret society’s attitude as one of low esteem for them and their children. As the
results of a survey show, “negative remarks from people that reflect society’s apparently
rather punitive response to people with profound and multiple learning disabilities and
their families” are frequently a part of their life-experiences. (Mencap, 2001, p.7)
The members of the focus group are reported as an invisible or voiceless minority group
(Faivre, Meeus, Menzel, Parent, 2000; Mencap, 2001). The lack of money, power, and
prestige weakens their ability to cope with the institutional, environmental and attitudinal
barriers they meet. The well-being of these families depends on the quality of the
support they receive from different educational, health and social services. However,
these services belong to different administrative sectors. Because of the lack of
cooperation and shared case-management between these sectors and services the
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support provided rarely meets the diverse and complex needs of individuals with severe
disabilities. In other words a vicious circle exists between the reduced ability to represent
themselves and the lack of accessible, available and affordable services and appropriate
social protection (Mencap, 2001; Inclusion Europe, 2008).
The need for positive examples
Despite the fact that social inclusion is a fundamental principle of social policy and any
modern theory of human rights protection emphasizes the right of participation, this
concept is rarely put into practice in the everyday lives of people with major support
needs. One of the main causes of this isolation and rejection is the lack of knowledge
and understanding of the special life-situation of these people and their families.
Although wide ranges of case studies, reports, qualitative and quantitative research are
available about the group in question, positive personal experience would be crucial to
promote real social and attitudinal changes. The studies about the life of people with
major support needs, which elaborate the difficulties and challenges of these families
without reporting the positive aspects of their lives, rather lead to attitudes of pity and
hopelessness instead of tolerance and acceptance. Furthermore, these reports tend to
instil the misconception that the daily life of people with severe disabilities and their
caregivers is tragic and burdensome.
The Consonante Method
The consonante method has been developed for people with severe disabilities. These
individuals live with many physical limitations. Therefore, their participation in a musical
performance is possible only through an oversimplified approach of common musical
activities. The simplicity of the method allows people without previous musical training to
experience the joy of active participation in a musical performance without the danger of
being embarrassed.
The method has been developed in Szent Erzsébet care home in Ipolytölgyes, Hungary,
since 2007. During the musical sessions it became obvious that common shared music
gives various opportunities for personal development. An orchestra called Nádizumzum
was formed with the purpose of giving public performances where these musicians can
experience success and appreciation. The orchestra consists of nine residents of the
institution. They have rehearsals twice a week and they give workshops and concerts. In
contrast to their everyday experience of dependence, they become aware of their ability
to give. Interactive concerts or dance-house events, in which the audience is more
involved in the shared music, are even more effective for creating an atmosphere of
equality and mutuality.
The consonante method is based on two basic principles. First, instead of teaching new
movements to make the instruments work, the instruments themselves or the way of
using them are transformed in order to suit the already existing movement patterns of
the musicians. This gives a meaning to the movements often repeated in a stereotypical
way. Second, the custom-built music instruments, such as the Bagpipe-bass, are based
on the special characteristics of Hungarian folk music, which accompany a melody with
the Fundamental Tone and the Perfect Fifth. These instruments are easy to handle and
encouraging for participation because no one can play them wrongly. It enables people
to participate in common musical activities without the fear of being ashamed or laughed
at.
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Consonante: an example of universal design
In contrast with the preconception that fulfilling the special needs of people with severe
disabilities is difficult and expensive, the Universal Design (UD) approach emphasizes
that “(when) mainstream products are universally designed it means a larger market for
manufacturers, less cost for adaptations, and reduced risks of misuse or accidents”
(Björk, 2009). Universally designed physical spheres and social environments are
beneficial for all members of society. Similarly, the method worked out to suit the limited
ability of individuals with cognitive and motor impairment offers positive experiences as
an initial motivation for musical participation for a wide range of people with different
musical backgrounds. Due to its flexibility, it serves as a tool for rebuilding broken
relationships through music, while trained musicians may also enjoy exploring the
possibilities of these unusual instruments. Introducing the methodology to our guests we
found that the simplicity of the method encouraged many of our visitors to participate.
People who cannot play any musical instruments also wanted to take part after seeing
and hearing our orchestra. Considering the positive effects of this common musical
experience on the occasional participants’ overall opinion, a workshop was planned to
exploit the possibilities of the setting. The first part of the workshop served as an
introduction to the focus group and the second part for gaining personal experience of
the method. The last part aimed at sharing music together with the members of the
Nádizumzum orchestra.
Difficulties in personal encounter: subconscious factors of rejection
The most important reason for rejection is not lack of compassion but the emotional
disturbance of meeting something unexpected, unusual, something that we are not
prepared for. This is a normal human reaction to something not usually seen or
experienced, but people often feel guilty because of their emotions. Abnormal physical
features have a profound stigmatizing impact on social encounters. The human mind
works with oversimplified schemata of the face or the human body. The first impression
of these individuals usually disrupts the familiar image or Gestalt about the human face
and body. Rimmerman (2013, p. 50) identifies this common experience saying that,
“when people are confronted by something other than themselves, their initial response
is one of discomfort and rejection”. Therefore obvious physical anomalies potentially
produce negative social interactions. Oaten, Stevenson & Case (2011) argue that
“perceptions of difference and deviance are sufficient to arouse existential anxiety,
however, it is especially likely to occur when such differences generate concerns in
people about their own vulnerability, such as when faced with physical disability and
disfigurement”.
Thus, individuals with visible signs of human vulnerability pose a potential danger to the
self-esteem of others (Martens, Goldenberg, & Greenberg 2005). In order to avoid facing
their own vulnerability people tend to establish strict categories of “us” excluding the
potentially dangerous “them”. Therefore, actions of charity towards these individuals or
even benevolent efforts made for their overall well-being possibly reinforce the
boundaries between the professional and the patient, the care-taker and the person with
major support needs or simply the giver and the receiver. Scanlon & Adlam (2011, p.
241) describe the contradictory effect of the social care systems of welfare states, which
“excludes whilst simultaneously seeking to include.”
In addition to the challenging external characteristics, people’s interpretation of the often
astonishing behaviour of individuals with severe disabilities also leads to negative pre-
judgments. For example, constantly repeated bizarre automatic hand movements or
Journal of Social Inclusion, 7(1), 2016
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involuntary changes in facial expression lead to uncertainty because the recipient of the
communication cannot decode the communicative intention behind these strong
behavioural signs. As a result, the human brain labels the person unpredictable, and
thus dangerous.
Limited ability to communicate is a characteristic feature of people with severe
disabilities. All human societies possess their own social patterns, usually verbal
expressions, to facilitate communication. The lack of these induces frustration, insecurity
and a sense of incompetence for those who are not prepared for an encounter with
these individuals.
Due to the aforementioned multifaceted barriers, the social inclusion of individuals with
major support needs is commonly labelled as a unilateral, expensive and generous
action on the part of society without any mutuality or advantage for the community. A
positive personal encounter is critical in order to reduce the sense of otherness and build
an inclusive society, where individuals with severe disabilities are not only tolerated, but
also important and equal members of the community. In order to cope with the sense of
difference, it is essential to offer common shared joyful activities in which participants
experience equality and mutuality and the comprehensive benefits of cooperation with
individuals with severe disabilities.
Inclusion is a manifestation of mutual development
Building an inclusive society is a mutual responsibility and a continual process of
learning from human diversity. In order to break down barriers between in-groups and
out-groups, members of the society should make efforts to understand and accept the
limitations of individuals with severe disabilities. However, the right amount of help and
support is essential. Undervaluing their ability of social learning and accepting all kinds
of childish, disturbing or antisocial behaviour is a misunderstanding of tolerance. It is a
lack of respect and equal treatment towards these individuals to deprive them of
opportunities for personal, social and emotional growth that represent a consequence of
learning the appropriate behaviour of a particular culture. Learning social development
skills is essential for marginalized people, because from their side, socially acceptable
behaviour is a key for participation in social life.
The isolation of people with severe disabilities causes them to have no opportunity to be
a part of any kind of social community, so they cannot learn to adapt themselves to the
norms of society. The fact that many of these individuals are not able to behave in a
socially acceptable way is to some extent a consequence of the lack of challenges and
expectations towards them. Being a part of an inclusive community reduces future
problems regarding socialization because real acceptance helps these individuals
experience the effects of their behaviour. The practice of orchestral work shows that
being a part of a musical community motivates them to overcome many of their
challenging behaviours and inappropriate habits. Furthermore, they are able to learn
new cognitive, social and musical skills.
It needs time, patience and creativity to establish norms and provide a relevant,
balanced set of aims for these individuals to achieve social goals while always
considering them as people who are able to learn and change. Both are important,
accepting their real limitations, and giving them new challenges and opportunities for
growth. Each and every case is different, so the purpose and condition of this ongoing
learning process of community building is one of continuous and mutual collaboration.
Journal of Social Inclusion, 7(1), 2016
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The worldview of the workshop
The workshop as a symbol and model of a well-functioning, inclusive society introduces
a new approach to social inclusion and helps people rethink the contribution of the
participation of people with severe disabilities. Moreover, the community that offers
respect, opportunity and participation for its most disabled members declares its
commitment to the overall value of human life. The quality of life for people with severe
disabilities can be a guarantee for a lifelong social security and dignity for all its
members regardless of what they own or accomplish. The motto of the Universal Design
“Necessary for some but good for all” is true for the attitudinal and environmental
changes that are needed to provide support and equal opportunities for individuals with
severe disabilities. From this point of view the complex needs of these individuals should
be identified in order to reduce the inefficiencies of the multiple systems of education,
social services or healthcare.
The overall benefits of inclusion are well documented in the area of education and
human resource management. The UNESCO document Guidelines for Inclusion
highlights the positive impacts of inclusion on the whole education system emphasizing
that flexibility in the curricula and teaching-learning methodology are not just a
necessary support for students with special needs but also enhancing the overall quality
of education. It is also reported that the practice of inclusion helps a society overcome
discrimination and prejudice, which are serious barriers to learning. The document
argues that “inclusion has important benefits for all children as it produces schools with
more enriching learning environments that view diversity as a positive force which must
be acknowledged and celebrated” (UNESCO, p.23). The findings of research conducted
in the field of supported employment have shown the positive effects of inclusion on the
whole organization. (Csányi, 2009; Leathem-Vég, 2009). When a company accepts a
less productive member into the team, ironically the whole organization becomes more
productive. The presence of these members increases productivity, creativity and
cooperation instead of rivalry. These values are mentioned as attributes of the most
productive organizations (Nadkami, Lovey, & Erdelyi, 2003; Pfeffer, 1993; Solomon,
2003). The organizational culture and the atmosphere of a company changes: the team
learns new ways of problem solving, new values occur as increasing morals, loyalty and
good personal relations among workers. Miller and Katz (2002) reinforce these findings,
saying that such an inclusive value system raises the level of support and commitment
among the members of the team, thus fostering the synergy of the whole organization
since the feeling of being appreciated and valued is the best motivation for workers
using their full capacities to strive for the goals of their team.
Community music therapy: pathways towards social inclusion
The approach of community music therapy is a response to the social model of disability.
When disability is considered to be the result of social, environmental and attitudinal
barriers, one of the most important aims of music therapy is to strive for changes in a
community. As Ruud (2008) explains:
Community music therapy is a way of doing and thinking about music
therapy where the larger cultural, institutional and social context is taken
into consideration. The approach involves an awareness of the system
music therapists are working within, it means that music therapy is not
only directed towards the individual, but often aimed at changing the
system that is sometimes part of the situation of the client.
Journal of Social Inclusion, 7(1), 2016
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According to the theory and practice of music therapy, shared music is a natural platform
for social integration, thus strengthening interpersonal relationships, reducing the sense
of difference and facilitating acceptance, respect and togetherness. (Kaufman & Source,
2011; Pavlicevic & Ansdell, 2004; Stige, 2010; Young & Nicol, 2011; Welch et. Al.,
2014). Community Music Therapy considers music as a social activity that promotes
participation and has a power to make changes in social status. There have been many
successful programs in which individuals with disabilities or serious health conditions are
empowered by being a part of a performing group. The following examples are
particularly worth mention: the Coro Arcadia in Spain, a choir of psychiatric inpatients
(Martín, 2013); the CeleBRation Choir, a group for a people with neurological conditions
(Talmage, Ludlam, Leão, Rogers, & Purdy, 2011); the ACTIVE Music Project for young
adults with intellectual disabilities in New-Zealand (Rickson, 2104), or the two groups in
Israel, the Idud choir whose members have intellectual disabilities and the Reanim choir,
whose members have quadriplegia (Elefant, 2010).
Method
The workshop has three important aims. In addition to introducing a method that allows
individuals with severe disabilities to play music as an orchestra, it is also important to
emphasize the yet undiscovered potential of their personal development, which offers a
new and positive view for therapists and educators. These goals could be achieved
without the participation of the musicians. Nevertheless, another important intention of
the workshop is to support the first encounter between volunteer participants and
musicians with severe disabilities, providing positive first-hand experience of the
community-building power of music.
The general structure of the workshop
The methodology of the workshop was developed for art therapy congresses and was
successfully implemented in the 2013 SIPE “Techniques of Art Therapy”, Budapest, and
in the 2014 “Áramlásban [In Flow] IV” National Art Therapy Congress in Budapest. The
same methodology is used to introduce the orchestra to the visitors of the institution. The
former workshops were strictly limited to 90 minutes, while the latter can be more flexible
depending on the previous experience of the group visiting the institution. For example,
a group of professionals from the same field are more likely to be interested in
methodological questions while adolescent visitors may need a more detailed
introduction in order to feel prepared for their encounter with the musicians. The
participants of different art therapy congresses are usually students or practitioners in
the field and they can sign up for various parallel activities. Therefore, it is a more
homogenous and predictable audience with a significant interest in the topic.
The workshop has four subsequent parts. The aim of the first section is to introduce the
focus group to the participants, while the second part serves for trying out the special
instruments and understanding the Consonante Method. The third part is for the
encounter, and the workshop is closed with a brief social gathering for the participants.
Because of the marginalized social situation of people with severe disabilities, there are
participants who have never met an individual belonging to the focus group.
Unfortunately, it is believed, it is difficult to involve people with severe disabilities in any
kind of meaningful activity, regardless of the dyadic interactions with the therapist.
Hence, the workshop briefly introduces the common features of people with severe
Journal of Social Inclusion, 7(1), 2016
39
disabilities, emphasizing their abilities and opportunities for educators and therapists. In
addition to the general introduction, it is also essential to explain the above-mentioned
psychological background because of the feelings of disturbance usually caused by the
first encounter. Meeting a person with severe disabilities is initially challenging, even for
professional art therapists. Therefore, the audience of the workshops also needs help in
coming to terms with their own feelings, because it is through understanding them that
they can be overcome. Closing the first section and introducing the second part, the
participants watch a short video about the method, filmed with the participation of the
orchestra members. This is important for the reinforcement of the theory about their
abilities as well as preparing them for the personal encounter. People seeing the
members of the orchestra do not focus on their disabilities or any unusual external
characteristics but on how they are able to use the instruments, how orchestral work
motivates them and how they communicate through music.
The second part allows participants to try the instruments and play accompaniment for
well-known folk songs. As a strong example for the Universal Design approach,
participants gain first-hand experience that the modified instruments worked out
responding to the needs of the musicians with physical and intellectual limitations are
helpful for ordinary people. With regard to the Consonante Method, people are able to
play as an orchestra for a few minutes regardless of their musical backgrounds. Despite
the fact that no one can play badly on these instruments, participants without any
previous musical training usually find it difficult to familiarize themselves with the
situation.
The core of the workshop is when the musicians of the orchestra and the participants
make music together. The members of the orchestra represent an experienced musical
community, so their participation brings power, unity and joy to the shared musical
activity. Furthermore, the presence of the orchestra musicians encourages participants
to explore the many possibilities that these situations offer, which often serves to
maintain their motivation. The common shared music creates an opportunity to interact
musically, bridging any gap caused by the lack of verbal communication or other
patterns of socialization.
In the closing session participants are encouraged to share their experiences in the
absence of the Nádizumzum Orchestra. The evaluation of the workshop is simply based
on the feed-back of the participants. These reflections are more about the sharing of
emotions or making comments about the experience of the common shared music with
the orchestra members than rational methodological discussions. These narrative feed-
backs report the positive and surprising impressions of the participants about the focus
group. The limited timeframe of a workshop in a conference is not enough to reflect all of
the aforementioned aspects benefits of inclusion. Although these shared experiences
provide some insights for future reflection, it would be better to give more time for
sharing and reflecting.
Discussion
The Community-Building Power of Music
The community-building power of music is based on different interconnections created
by music. Thus, the experience can be described as a complex form of communication
(Miell, MacDonald, & Hargreaves, 2005). This is essential in the case of such a
Journal of Social Inclusion, 7(1), 2016
40
marginalized minority as adults with severe disabilities, because their social isolation is
usually based on the fact that they are unable to use the most common forms of human
communication. As a result of their challenges in communication and their marginalized
status, they are voiceless people at a physical as well as at a social level. The symbolic
act of giving them a “voice” through music may be considered an act of empowerment.
Ruud explains musical performance as “a way to gain access to symbolic resources
often highly regarded within a society” (Ruud, 2008).
Common shared music has a power to alleviate the tension caused by the initial
challenges of the encounter by providing joy and the sense of common achievement.
The simplicity of the instruments encourages people to be active participants in this joint
activity, whether they are professional musicians or people who describe themselves as
tone-deaf. While trained musicians usually enjoy trying new rhythm patterns and tone-
colors using the instruments in new creative ways, musically untrained people make
simple rhythms or metric accompaniments, adjusting to the orchestra. The well-known
folk songs guarantee the unity of the performance. The experience may be seen as an
example of the Universal Design paradigm, particularly for the first three principles, such
us equal use, flexibility of use and simple and intuitive use. Indeed, a product should be
“useful to people with diverse abilities”, “accommodate a wide range of individual
preferences providing choice in methods of use”, and be “easy to use regardless of the
user’s previous experience, knowledge or current concentration level” (Connel et. al.,
1997).
Reframing social interaction
In contrast to the first impression of the dependence and powerlessness of people with
severe disabilities, the workshop creates an unusual situation with a different form of
social interaction. Being part of a performing group is a new and challenging situation for
participants without previous musical training, while a familiar experience for the
musicians with severe disabilities. A group of musicians with severe disabilities, who are
characterized by their “extensive and ongoing support need”, became an inclusive
musical community sharing their joy and music with those who are less experienced or
skilled in the field of instrumental music and creative improvisation. (TASH, p.19) Many
people have broken relationships with music, usually labeling themselves as unmusical
or tone-deaf (Ruddock & Leong, 2005). Many were inhibited and lost their appetite for
active musical participation usually in their childhood due to negative comments or other
adverse experiences. The feeling of shame can have lifelong consequences. The
workshop offers treatment and a profound change in these people’s perception of their
musical abilities. Although they are usually too cautious to try the instruments, after
seeing and hearing the orchestra’s performance they also want to take part. The key to
this change is the presence of musicians with severe disabilities. The occasional musical
collaboration allows people to feel that they can easily become part of a whole: a
community in which they can participate and achieve common goals. Common shared
music builds a new inclusive social field where people with severe disabilities gain
access to participating in a social community while people with negative musical
experiences gain access to participating in a musical community. Turino (2004, p. 1-2)
argues that “musical participation and experience are valuable for the processes of
personal and social integration that make us whole”. This mutual empowerment makes
the experience of equality even more effective.
Journal of Social Inclusion, 7(1), 2016
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Experiencing the benefits of an inclusive community
The joyful and active performance of the musicians with obvious challenges helps
people immerse themselves in the commonly shared music regardless of their less
visible inabilities and weaknesses. Their presence allows participants to make mistakes,
thus creating a joyful and secure environment. As a result, the quality of the musical
performance of the whole group is enhanced. The main reason of the change is that the
presence of individuals with disabilities allows for the acceptance of personal limitations,
thus alleviating any feeling of shame. Thus, both orchestra members and guest
musicians clearly enjoy the event due to the increased musical communication, mutual
respect and creativity. This experience resonates with the results of research into
organizational culture and the fifth principle of the Universal Design, which is “tolerance
for error”. The Universal Design approach stresses that “the design minimizes hazards
and the adverse consequences of accidental or unintended actions” (Connel et. Al.,
1997). The same principle appears in organizational culture when a team considers
error as an opportunity for learning and a source of innovation. If workers are expected
to be productive and successful without making mistakes, the result is an atmosphere of
fear and rivalry. As Dyck, Frese, Baer & Sonnentag, (2005) explains, “(In) the long run,
organizations that have an effective approach to errors may be more profitable because
these organizations learn from errors, are more apt to experiment, and are more likely to
innovate”. They also state that “Unfortunately, much of the evidence for using a positive
organizational approach to errors is still anecdotal”. The presence of people with severe
disabilities usually breaks through the strict norms that scarcely tolerate mistakes and
brings about this desirable shift of values.
The workshop provides a new vision of inclusion as joyful, continual and mutual growth
in learning and understanding. Musicians with severe disabilities experience a distinct
level of competence through interaction with participants, while participants learn from
the experience that the presence of these musicians increases productivity, creativity
and cooperation within the group.
Perspectives
The normal duration of a workshop in a conference is 90 minutes. This is a short time for
introducing the focus group to the participants, demonstrating the method, giving time to
explore the special instruments, creating a positive encounter and receiving valuable
feedback. Because of the strong emotional involvement, it is difficult to conduct a
rational and detailed evaluation of the experiences of the participants. Therefore, longer
workshops and disability awareness projects are planned based on the positive and yet
unexploited potential of this prepared and supported collaboration. Future work is
planned to connect these workshops with other disability awareness projects, providing
positive encounters for other people as well. The longer period offers more opportunity
for measurement, evaluation and progress in methodology.
In order to evaluate these workshops, the main criterion would be an analysis of the
quality of the musical performance. Experience has shown that the musical quality of the
inclusive performance exceeded the quality of the previous performance of the non-
disabled group. As a first step, both should be recorded. After careful analysis
differences could be identified. Presumably, the second performance will show a higher
level of unity and temporal accuracy. The second recording may have a definite increase
in the creative use of the instruments and a better tonal quality in singing and other
positive changes. We would expect these results both in the common performance and
in most of the individual music productions. Having obtained these initial results, the
Journal of Social Inclusion, 7(1), 2016
42
participants should meet again, to study and interpret the results, as well as having
loosely-structured individual and/or group interviews conducted with them. In addition to
measuring the effectiveness of this form of inclusion, refreshing the participants’
impressions a few weeks after the experience would be beneficial in deepening the
positive experience. Presentation of the expected positive results of the cooperation
could provide a new understanding of the role of these individuals regarding the
productivity of the community.
Projects with adolescent musicians
As a practical outcome, based on the experience of these workshops, another long-term
project was started. The Nádizumzum Orchestra and a number of adolescent musicians
together prepared a common musical performance, so establishing cooperation between
the members of the orchestra and the students. The main goal of this long-term project
was to work together on musical productions as equal musicians. Striving to reach
commonly shared musical goals is a natural situation in which these young musicians
can encounter adults with severe disabilities. Moreover, in one of the most sensitive
stages of life they face basic questions as to the meaning of life, and the value of human
life. They face questions regarding their inner motivation and drive, as well as being
encouraged to re-evaluate expectations, life satisfaction and value systems. The project
started in November 2014, with two successful concerts for the World Day of Music
Therapy, and continued with a flash-mob, which was used as the overture of the Ars
Sacra Festival in 2015. In the following year we celebrated the World Day with another
performance with a different group of music students.
These common performances are also worthy of more detailed research. In contrast with
the participants without previous musical training, in the case of music students the
quality of the performance would not be so informative. In this case the long-time effect
of the experience is the most important factor, so it should be measured after a project of
at least one year, with regular common performances by the two groups. Instead of
asking direct questions about the experience, the possible changes in their preferences
or orientation should be measured with in-depth interviews, Swartz-value scales,
prosocial behaviour tests and projective drawing tests.
Conclusion
People with severe disabilities and their families usually face social exclusion. The lack
of inclusion impacts the quality of life of the whole family. The social inclusion of people
with severe and multiple disabilities is usually considered as representing a one-sided
act of humanity or charity. This is an unequal relationship, in which society is the active
player and these individuals are passive objects of charity, without any reciprocity. This
position is rooted in the challenges of the first encounter: many are completely distraught
when they come into contact with individuals with severe disabilities. Thus, the main
reason for the marginalized social situation of these people and their families is not due
to any lack of benevolence but to the misgivings, powerlessness and embarrassment
that many experience on meeting them. “People did not react with deliberate
unkindness, but lacked insight and understanding” (Mencap, 2001, p. 18). In order to
increase the quality of life for these individuals and their families, it is essential to create
opportunities for personal encounters that promote mutual understanding. It is important
to help people when they first meet individuals with severe disabilities. As a first step,
people have to understand and accept their own disturbing feelings without judging and
Journal of Social Inclusion, 7(1), 2016
43
being scandalized. Rejection should be accepted as a completely normal and human
reaction to such an encounter, but it has to be elaborated. Professionals have to become
bridge-builders, imparting information about the difficulties faced by these individuals
and their families, preparing both parties for the encounter and providing a positive
context. Workshops based on the Consonante method allow participants to experience
music as a community building activity. The most important purpose of this project is to
provide a new perspective for social inclusion. Participants perceive that an inclusive
community benefits not only people with severe disabilities but all. The presence of
people with disabilities increases cooperation and decreases rivalry, thus empowering
people to use their creativity and strengthening personal relationships within the
community. As one of the participants of a workshop said in conclusion, “I enjoyed it so
much, it was a lot of fun. But if I had met these people on the tram, I wouldn’t have
known what to do”.
Journal of Social Inclusion, 7(1), 2016
44
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Biographical notes
Luca Tiszai graduated at Ötvös Lorand University in 2000 in special education and
earned her second degree in music education in 2004. Since 2007 she has been
working with individuals struggling with severe physical and intellectual disabilities in a
Catholic Szent Erzsébet Nursing Home in Ipolytölgyes, Hungary. In 2013 she earned her
master degree in Andragogy at Pazmany Péter Catholic University. Her area of
expertise lies in working with individuals with disabilities. Since 2016 she is a faculty
member of the University of Szeged Juhász Gyula, Faculty of Education, Institute of
Special Needs Education.
... This is followed by the People's Republic of China (P.R. China) with 5 papers (Wong et al., 2019;Wong and Chik, 2015;Wong and Chik, 2016a;Wong and Chik 2016b;Wong et al., 2016); Canada with 4 papers (Bell, 2017;Bell et al., 2020;Grond et al., 2020;Mitchell, 2016); Russia with 4 papers (Gorbunova and Kiseleva, 2020;Gorbunova and Mikhutkina, 2020;Semenova, 2019;Tagiltseva et al., 2018); Italy with 4 papers (Amico and Ludovico, 2020;Davanzo and Avanzini, 2020;Davanzo et al., 2018;Degli Innocenti et al., 2019) and Brazil with 4 papers (Santos et al., 2020;Silva, et al., 2020;Silva et al., 2018;Souza and Sampaio, 2019). In addition, we also find Spain with 3 papers (Cano and Sanchez-Iborra, 2015;Díaz-Santamaría and Moliner, 2020;Moreno-Garcia, 2020) and Sweden with 2 papers (Frid, 2018;Frid 2019) (Altun and Eyüpoğlu, 2018;Rasmussen and Kış, 2018); Hungary with 2 papers (Tiszai, 2016a;Tiszai, 2016b) and Greece with 2 papers (Theodorou and Drigas, 2017a;Theodorou and Drigas, 2017b). Finally, we also find Kuwait (Eshaq, 2019) and Taiwan (Lee and Lin, 2020) with a work developed in each country. ...
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Conference Paper
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Context Diogenes of Sinope, the ancient Cynic philosopher who lived in a barrel in the agora in Athens, coined the term ‘cosmopolitan’ in reaction to a dominant socio-political structure which allowed some to be citizens of the metropolis whilst denying this privilege to others. Diogenes asserted that he, like all others, was an inhabitant of a universe, rather than a citizen of any given social state and he refused to be included or excluded, to submit either to ‘us’ or to ‘them’. He would not ‘render unto Caesar that which was Caesar’s’. The paradigmatic moment epitomising this position lies in the story of Diogenes’ Cynical encounter with Alexander the Great. Diogenes is said to have dangerously declined an invitation from Alexander to join him at some public gathering. Alexander, piqued by this refusal, went to find Diogenes in his barrel and was impressed, not only by the abject state of Diogenes’ existence, but also by his wit and intelligence, and asked if there was anything he could do for him. The latter replied from his barrel: ‘Yes there is – you can step aside because you are blocking my light ...’. This reply goes to the very heart of the cosmopolitan attitude to the metropolitan sovereignty which Alexander asserts and which Diogenes refuses to recognise. In our presentation we will examine the dynamics of social exclusion in our times, taking the system of care, representing society-as-a-whole, as a perverse system that excludes whilst simultaneously seeking to include. We note that the very real psycho-social problems associated with those who ‘refuse’ are complex and chronic and that ‘we’, the ‘socially ordered’, have a collective responsibility for their co-creation. In our use of the encounter between Diogenes and Alexander we explore the reciprocal violence in the relationship between ‘us’ and ‘them’ and the ideological clash between ‘metropolitan’ systems of care and the excluded ‘cosmopolitan’ seekers, or avoiders, of different kinds of asylum. Aims and methodology This paper is based upon case study material derived from our shared experience of direct face-to-face work with the chronically excluded in educational and social care settings and with the individuals and teams deployed to engage with them. The case material will draw upon our experience of three contrasting but inter-related social problems: first, the introduction of Cognitive Behavioural Therapy as a treatment for an economic problem of worklessness; secondly the problem of school-refusal; and lastly, the project to end rough sleeping in London in time for the 2012 Olympic Games. The conceptual framework for these discussions will be underpinned by the writings of Marx, Foucault, Camus, Declerk, Zizek and Rancière as we attempt to redefine the relational difficulties of the ‘uneducated’, the ‘workless’ and the ‘unhoused’. We draw on Rancière’s writings on emancipation and education to explore the problems of treating inclusion as a reduction in distance between the included and the excluded, a conception of inclusion which reinstates inequality by assuming it as a premise. Rancière treats this model as ‘colonial’ in that it endeavours to being people into an existing order, in contrast to troubling or reconfiguring that order. We follow Rancière in noting that the relationship between the possessors of knowledge as power and the dis-possessed is characterised by the ways in which those ‘in the know’ keep those ‘out of the loop’ at bay in their very efforts to ‘include’ them. We also refer to Rancière’s concept of ‘mésentente’ to characterise interactions in our case material as a caesura between the would-be-teacher and the won’t-be-taught. Key findings The psycho-social difficulty presented by this refusal speaks of the hostility of the ‘refused’ as much as the anger of the ‘refuser’. It is therefore not surprising that some become serial takers-and-leavers of ‘help’. Whether they be disaffected young people who refuse to be educated, homeless people with complex needs who refuse to be settled, people with eating disorders who refuse to eat (or to stop eating), people with drug and alcohol problems who refuse to stop damaging themselves or recidivist offenders who refuse to be corrected, there will always be people who refuse to join in. In a truly pathetic parody of the occupations of those whose help they refuse, managing themselves in their refusal becomes their full-time job: it is what they do for a living. When we stand in Alexander’s shoes and are refused, how are we to make sense of this experience? Alexander himself is supposed to have been both very impressed and deeply wounded by Diogenes’ refusal. It could be said that they shared a wish to live together in a peaceful world: it was their means of achieving it that were different. Alexander’s metropolitan vision was of a unified world pacified by his enlightened leadership; whereas Diogenes’ cosmopolitan world could only be built upon ‘liberté, égalité, securité’ (Proudhon, 1840). Whilst Diogenes and Alexander might perhaps have warily recognised some commonality, their two positions were irreconcilable and mutually exclusive; they must exist in an inevitable relationship of hostile inter-dependency. Societally – ‘our’ – hostility towards ‘the refuser’, and our collective failure to understand, is manifest in a panoply of systemic and socially sanctioned forms of violence that ‘we’ are too often motivated to forget: because to remember is also to re-member [sic] ourselves in relation to our own participation in the process. Implications We discuss ways in which our paradigmatic encounter between Diogenes and Alexander might offer a way of conceptualizing the relationship between the refuser and the refused and so guard against some of the more problematic dynamics described above. Rancière’s (1987) concept of intellectual emancipation, located in an axiomatic assumption of equality of humanity and intellect, has powerful implications for clinical, educational and social care interventions across the caesura. As ‘metropolitan’ service providers we may not be able entirely to renounce our hostility towards those that are dis-membered but the challenge of this paper is that we might find ways of making possible more ‘cosmopolitan’ forms of hospitality, by verifying equality rather than endeavouring to colonise inequality. We do not under-estimate the collective organisation required to do this nor do we believe that it can be achieved from within any single academic discipline or community of practice. Rather we would like to speak to the possibility of us all becoming cosmopolitan members of a properly Cynical multi-disciplinary and inter-professional enquiry into these deeply traumatising and excluding processes. We hope that in offering our view from Diogenes’ barrel, we might make some contribution to these conversations.
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