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This study addresses how help is provided for pupils with physical disabilities and how school assistants influence their participation in school. Data were collected through field observations and interviews with seven pupils between 7 and 15 years old and with each pupil's teacher and assistant. The analysis resulted in a description of features that influenced how help was provided and the consequences in school for the pupil with disabilities. A major finding was that the assistants could both facilitate and hinder participation. We concluded that an awareness of the priority the pupils place on social participation with their peers is needed to ensure effective and flexible support is made available to pupils with disabilities.
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OTJR: Occupation, Participation and Health
88
Legal and international agreements state that
pupils with disabilities shall have the same
opportunity to benefit from school life as non-
disabled pupils, both socially and educationally
(United Nations Educational, Scientific and Cultural
Organization, 1994; United Nations General Assem-
bly, 1989; United Nations General Assembly, 1993).
To f ul fi ll t hi s g oa l, a c ti on s a re n e ed ed i n s ev er al
areas. Both in Sweden and internationally, the use of
assistants in school has become a primary tool to
facilitate the participation of pupils with disabilities
(Giangreco, Edelman, Luiselli, & MacFarland, 1997;
Ministry of Social Affairs, 1998).
According to Webster’s concise dictionary
(Landau, 1997), the term “participation” means to
take part in or have a share in common with others.
Inherent in the term participation is also each par-
ticipant’s opportunity to influence the conditions of
the group by participating in decision-making,
something that is often highlighted by client organ-
izations and state and legal documents (Barnes,
Mercer, & Shakespeare, 1999; Brownlea, 1987;
Lewin, 1998; Ministry of Social Affairs, 1999). In the
International Classification of Functioning, Disability,
and Health (ICF), the term participation has a specif-
ic meaning in the context of health and is defined as
“involvement in life situations” (World Health
Organization, 2001). However, the qualifier (numer-
ic codes that specify the extent or magnitude of the
functioning or disability in that category) of partici-
pation is the performance that describes what an
individual does (with or without assistance) in his
or her current environment. The ICF states that
because the current environment includes a societal
context, performance could also be understood as
“involvement in a life situation” (World Health
Organization, 2001). It is noteworthy that the indi-
vidual’s experience of participation and autonomy
is not included in the ICF’s operationalization of the
term.
Participation in School: School Assistants
Creating Opportunities and Obstacles for
Pupils With Disabilities
Helena Hemmingsson, Lena Borell, Anders Gustavsson
Key words: assistants • physical disabilities • social participation
ABSTRACT
This study addresses how help is provided for pupils with physical disabilities and how school
assistants influence their participation in school. Data were collected through field observa-
tions and interviews with seven pupils between 7 and 15 years old and with each pupil’s
teacher and assistant. The analysis resulted in a description of features that influenced how
help was provided and the consequences in school for the pupil with disabilities. A major find-
ing was that the assistants could both facilitate and hinder participation. We concluded that
an awareness of the priority the pupils place on social participation with their peers is needed
to ensure effective and flexible support is made available to pupils with disabilities.
Helena Hemmingsson, PhD, OTR, is Associate Professor, and Lena Borell, PhD, OTR, is Professor, Department of Occupational
Therapy, Neurotec, Karolinska Institutet, Huddinge, Sweden. Anders Gustavsson, PhD, is Professor of Special Education and
Head, Department of Education, Stockholm University, Stockholm, Sweden.
Summer 2003, Volume 23, Number 3 89
How help is provided or handled within the
school system remains largely uninvestigated. In fact,
none of the studies examined had chosen to make
help in schools for pupils with physical disabilities
their primary focus. Rather, this aspect comes up as a
secondary or tertiary focus of the studies.
In an investigation of barriers in regular schools,
it was found that pupils who had access to an assis-
tant generally experienced the school environment
as more accessible than did pupils without access
to an assistant (Hemmingsson & Borell, 2002). This
finding was especially interesting because the
pupils who had access to an assistant were often
those with the most severe disabilities. The pres-
ence of assistants in the classroom has also been
put forward as a barrier to participation. Giangreco
et al. (1997) investigated the effect of instructional
assistants for a group of deaf and blind children
with cognitive delay who attended regular school.
They found that the assistants seemed to replace
special educational competence and decreased the
pupils’ opportunities to interact with teachers and
peers. Ainscow (2000) argues that the presence of
assistants in the classroom may eliminate any con-
sideration of individual views on how practice
might be changed to meet the needs of the pupil
with disabilities.
The opportunity to direct and control the sup-
port delivered is perceived as most essential
among adults with disabilities to obtain autonomy
in everyday life (Askheim, 1999; Duncan & Brown,
1993; Gough & Modig, 1995). Some studies indicate
that young people may find this issue problematic.
Barron (1995) discussed the assistant as an obstacle
to autonomy for young people with disabilities.
She found that the close relationships between
pupils and assistants sometimes limited the pupil’s
opportunities to direct the assistants. Skär and
Tamm (2001) revealed that children and young
people often perceived their relationship with the
personal assistant as ambivalent and unequal. In
contrast to the experiences of personal assistants,
students in specially adapted upper secondary
schools stated they preferred a system with a pool
of assistants that increased their opportunities to
choose when help was needed (Hemmingsson &
Borell, 2000).
Although the majority of studies discussed the
negative effects of assistants or problems associated
with using assistants, most researchers agreed on
the need for pupils with disabilities to have access to
an assistant. The current explorative study focuses
on how assistance is provided in school to pupils
with physical disabilities and how the assistants
influence pupils’ participation.
Method
Procedure
Selection of Participants. Potential participants
were identified by professionals in the schools’
health care system and by The Swedish Institute for
Special Needs Education (Specialpedagogiska
Institutet). These groups contacted the pupils and
their parents, introduced the study both over the
telephone and through a letter, and asked permis-
sion for the first author to contact them. Criteria for
inclusion were that pupils had physical disabilities
and attended compulsory schools. Pupils from dif-
ferent grades, different schools, and different
regions in Sweden were included to get a more var-
ied picture of the help provided. All pupils contact-
ed agreed to participate in the study (N= 7).
Informed consent to participate was obtained from
the pupils, their parents, and school authorities.
Data Collection. The first author collected all data
through field observations, informal interviews, and
planned semi-structured interviews (Bogdan &
Biklen, 1992; Patton, 1990). The field observations
were scheduled in cooperation with each family.
Each pupil was observed during two full school
days in the classroom and when convenient during
breaks. Altogether, observations were conducted for
approximately 80 hours. During observations,
detailed field notes were taken.
The focus of the observations was how assistance
was provided to pupils with physical disabilities
and how the assistants influenced participation. Of
special interest was the pupils’ interaction with
classmates and opportunities to participate in
school. In the classroom, detailed field notes were
taken in which the teacher’s instructions and what
the pupil did or said, including his or her interaction
with his or her assistant, teachers, and peers, were
noted. The researcher did not participate in the
classroom activities or interrupt the social interac-
tion in class, with the exception of a few occasions at
the request of a pupil or teacher. During breaks, the
researcher interacted with pupils, teachers, and
assistants without taking notes. However, immedi-
ately after the breaks short reminder notes were
taken on actions and conversations during breaks
and these were then recorded in great detail in the
evening. In addition, the investigator’s ideas,
thoughts, and questions were documented during
the process of data collection.
After the observation periods in the classrooms
were concluded, individual interviews were con-
ducted with each pupil and with each pupil’s
teacher. Each interview took approximately 1 hour
and all interviews were audiotaped except the inter-
OTJR: Occupation, Participation and Health
90
view with a pupil who used alternative communica-
tion and those with the teacher and pupils at the
junior level. In these interviews, field notes were
taken. All interviews were transcribed verbatim.
The interviews were built on previous observations
with the intention of obtaining different views and
explanations of the situations documented in the
field notes. When there was just one assistant in a
class, the assistant was interviewed individually. In
classes in which more than one assistant worked,
interviews sometimes included more than one assis-
tant. Some of the assistants were contacted after-
ward by telephone to get additional information or
to clarify specific issues. Altogether, 19 individuals
(pupils, teachers, and assistants) were interviewed.
Participants
Pupils. Seven children (three girls and four boys)
with physical disabilities were selected to partici-
pate in the study (Table 1). Pseudonyms have been
used. The pupils’ ages ranged from 7 to 15 years.
Tw o p up il s at te nd e d a sp ec ia l e du c at io na l c la ss fo r
children with physical disabilities and five pupils
attended regular classes with peers without physical
impairments. Although all pupils had physical dis-
abilities, the consequences of their disabilities and
their need for help from an assistant were different
(Table 1).
When the class teachers were asked about the
pupils’ knowledge, David, Susan, and Mary were
considered to be about average compared with
peers of the same age. Ryan, Jane, and Mark were
below average, and Tom was estimated to be above
average. All pupils stated that they had at least one
friend in class.
Assistants. Susan, Mary, Jane, Mark, and Tom’s
assistants were women. Ryan and David’s assistants
were men. The ages of the assistants ranged from 21
to 52 years. They were not trained teaching assistants.
No specific training for assistants is available in
Sweden. The work experience and education of the
assistants varied. The assistants in the special educa-
tion class and Mary’s assistant had more than 5 years
of work experience as assistants, whereas the other
assistants had less than 2 years of experience with
this particular work. Only the assistants in the special
education class and one of the assistants at the junior
level were educated beyond upper secondary school.
In the special educational class and at the junior level,
more than one assistant was employed.
Data Analysis
In the first phase of data analysis, a constant
comparative method was used (Bogdan & Biklen,
1992; Patton, 1990). All data accumulated were read
several times and then coded in a line-by-line analy-
sis. The primary focus of the coding procedure was
the pupil–assistant interaction in the classroom and
the pupils’ opportunities to choose and make deci-
sions about the help provided. At this point, the
field notes and the interviews (with the teacher,
pupil, and assistant) were analyzed separately for
Ta b le 1
The Pupils’ Age, Diagnosis, Mobility, and the Help Provided by the Assistant
JJuunniioorr LLeevveellIInntteerrmmeeddiiaattee LLeevveellSSeenniioorr LLeevveell
DDaavviiddSSuussaannTToommRRyyaannJJaanneeaaMMaarrkkaaMMaarryy
Age, y 7 8 10 13 13 14 15
Diagnosis Cerebral Spina Cerebral Amblyopia Cerebral Cerebral Spina
palsy bifida palsy and mild palsy palsy bifida
hemiplegia
Mobility Walking Powered Walking Walking Powered Powered Manual
with a roller wheelchair wheelchair wheelchair wheelchair
Help provided by
the assistant
Reading O O A A A A O
Wri tin g O O A A A A O
Tra n sf er fr om A A N N A A A
sitting
Outer clothing O A O N A A O
Toi l e t ing N A N N A A O
Note. A = always; O = occasionally; N = never/hardly ever.
aSpecial educational class.
each pupil. The codes for each pupil were then com-
pared to identify similarities and differences and
grouped together on a more general level (Bogdan &
Biklen, 1992). In the next step of the analysis, the cat-
egories from pupils, teachers, and assistants were
compared and analyzed separately for each group
(i.e., all teachers were compared with teachers).
Themes that emerged were (1) assistant types; (2)
teachers’ perspectives of learning; (3) the classroom;
(4) pupils’ lack of influence; (5) pupils’ desire for
social participation, and (6) the assistants’ influence
on school life. During the analyses, all themes were
continuously compared with the data obtained from
interviews and observations to ensure they were
based on the observations and interviews (Patton,
1990).
Finally, the relationships between these themes
were investigated. In this phase, different interpreta-
tions were investigated and then checked against the
existing data (Gustavsson, 2000). In so doing, one
interpretation involving a dilemma between partici-
pation in learning and social participation emerged
as the most important for an overall understanding
of the themes and their relationships. Peer examina-
tion was conducted continuously in this step to
investigate the credibility of the analysis and the
interpretations (Gustavsson, 2000; Krefting, 1991).
Results
Astriking observation that emerged from the
field study was that some of the assistants were
always seated close to the pupil, whereas others
kept a distance by placing themselves one or two
desks away from the pupil. A third variant was to sit
outside the group of pupils. All assistants provided
some practical help, but the assistance provided
seemed to vary according to where the assistant was
seated within the classroom.
One way of understanding this could be that the
distance between the pupil and the assistant was
related to the degree of the pupil’s performance lim-
itations. Proximity to the pupil would then be a
strategy to compensate for severe performance
problems. However, this never seemed to be the
case. Tom had the mildest performance limitations
of all of the pupils observed and his assistant was
always in close proximity. In the special educational
classroom, where the pupils with the most severe
performance limitations attended classes, the assis-
tants sat outside the group of pupils.
Nor did we find any support for the hypothesis
that the distance between assistant and pupil
increased with the pupil’s age. Rather, we discov-
ered that the assistants’ position in the classroom
seemed to be related to specific characteristics of the
help provided. These characteristics were the acces-
sibility to the assistant (i.e., when and where the
assistants were available to the pupil), the assistant’s
main responsibilities, and who took the initiative for
helping. As a result of these findings, three assistant
types were identified: (1) the assistant as a stand-in
for the pupil; (2) the assistant as a help-teacher; and
(3) the assistant as a back-up resource. Table 2 gives
an overview of the characteristics of the assistants’
roles.
Assistant Types
The Assistant as a Stand-in for the Pupil. The stand-
in assistant was always in close proximity to the
pupil, sat next to the pupil, and accompanied the
pupil almost everywhere within the classroom or in
the school building. Consequently, the pupil seldom
had to call for help. Such an assistant listened to the
teacher’s instructions as attentively as the pupil and
initiated help immediately based on those instruc-
tions (e.g., picking up the right book or taking a pen-
cil from the desk and beginning to write) without
the pupil’s having to ask. This resulted in help given
without the pupil’s request. The assistant was simi-
Summer 2003, Volume 23, Number 3 91
Ta b le 2
Characteristics of the Assistant Types
CChhaarraacctteerriissttiiccTThhee SSttaanndd--iinnTThhee HHeellpp--TTeeaacchheerrTThhee BBaacckk--uupp
Proximity to the pupil Sits next to the pupil One or two desks away Outside the group of pupils
Initiative for assistance Often the assistant’s On both the pupil’s and The pupil’s or the teacher’s
initiative the assistant’s initiative initiative
Pupil’s accessibility to In classroom-related In all activities during the In all activities during the
the assistant activities school day school day
Main responsibilities Help the pupil manage Help the teacher organize Practical assistance
the working pace in class everything that specifically
concerns the pupil with
disabilities
lar to a stand-in for the pupil and performed parts of
the task that the pupil was supposed to perform.
Because of the assistant’s attentiveness, help dur-
ing lessons was always immediately available.
However, the pupil had limited opportunity to
choose when or if he or she desired or needed sup-
port because the assistant spontaneously initiated
help. Thus, pupils with this type of assistant could
usually keep up with the working pace in class. In
fact, keeping pace seemed to be one of the main
responsibilities of the assistant. An interesting con-
sequence of the close interaction during lessons was
that the assistant, who also needed a rest, was inac-
cessible during breaks.
The Assistant as a Help-Teacher. The help-teacher
assistant also sat within the group of pupils.
However, he or she wanted to avoid affecting the
pupil’s initiative in school activities or in peer inter-
action and therefore chose a place at some distance
from the pupil (e.g., diagonally behind or one or two
desks away in the classroom). From this position,
the assistant observed the pupil and provided help
when the pupil expressed orally or visually that
help was needed, but returned to his or her previous
place when the task was completed. However, it
was observed that each time the teacher interacted
with the pupil, the assistant rose from his or her
chair to listen to the teacher’s instruction on his or
her own initiative. Listening to the information
allowed the assistant to repeat the instructions and,
if needed, to elaborate to enhance the pupil’s under-
standing of a specific task.
These assistants seemed to have an intermediary
role between the teacher and the pupil and acted as
help-teachers during lessons. They also undertook
overall responsibility (e.g., organizing and planning
everything that specifically concerned the relevant
pupil). For example, they influenced the schedule so
that it suited the pupil with disabilities or adapted
assignments and arranged alternative forms of
examination. Thus, part of the teacher’s role was
transferred to the assistant acting as a help-teacher.
One result of the assistants’ efforts to plan and
organize the assistance was that they could some-
times leave the pupil during the lessons. This, in
turn, made it possible to be present during breaks
and support the pupil in this area of school life.
The Assistant as a Back-up Resource. The back-up
assistant was seated outside of the group of pupils.
Here, the distance between the assistant and the
pupil signaled that, in general, the pupils were sup-
posed to manage by themselves. To encourage task
performance by the pupils, the assistant remained
ready in the background in case his or her support
was needed but did not interfere until help was
asked for. We observed that the distance between
the pupil and the assistant limited the opportunities
for pupil–assistant interaction during the lessons
and the use of nonverbal cues. This in turn obvious-
ly slowed the working pace of the pupil, who had to
signal for support and then wait until help was
given. Thus, help was mostly provided after a
request from the pupil or the teacher, as illustrated
in field notes from a junior level class:
The teacher says: “Let’s gather around David’s desk
to look in his book on birds.” All children get there
except Susan, who does not move. “Can’t you
come?” the teacher asks Susan, who is in a wheel-
chair. “No,” Susan answers, a bit sullen. “We can
make some place here,” the teacher says, and the
assistant rises to rearrange the furniture.
Practical support in self-care activities, such as
toileting, transporting, and eating, was a primary
responsibility of these assistants. In addition to prac-
tical assistance, the back-up assistant might be
involved in training the pupil’s self-care skills as
requested by parents or therapists. This meant that
the assistants sometimes decided that help was not
needed, as illustrated in field notes from a junior
level class:
David is thrilled, as he has been chosen to read a
riddle in front of the class at the teacher’s desk. The
assistant says, “Now you must walk back and forth
by yourself.” David starts to walk but loses his bal-
ance and falls over, and without help, he is unable
to get up. The teacher gives him her hand and helps
him to get to her desk.
This observation indicates that the assistant chose
to emphasize walking skills as more important than
the pupil’s opportunity to practice and master the
task of speaking in front of a group.
Teachers’ Perspectives of Learning
The back-up assistants were found only at the jun-
ior level and in the special educational classroom.
The teachers in these classes emphasized pupils’ task
performance and adjusted the curriculum to make it
possible for the pupils to do as much as possible on
their own. The teachers’ perspective on learning here
could be characterized, above all, as learning by
doing. Consequently, assistance was given only when
necessary and the distance between the assistant and
the pupil seemed to be a strategy used to oblige the
pupil to do as much as possible unaided. Thus, it
seemed natural for these assistants to function as a
back-up resource and they only initiated help when
OTJR: Occupation, Participation and Health
92
the pupil asked for support or when the pupil had
already failed to manage on his or her own.
However, the assistants who acted as stand-ins
for the pupil or as help-teachers were working in
classes where teachers emphasized learning by
knowing. Developmental theorists argue that learn-
ing is an active process that unfolds through doing,
knowing, and interaction (Dewey, 1991; Elkind,
1976; Qvarsell, 1976). In an earlier study,
Hemmingsson, Borell, & Gustavsson (1999) discov-
ered an educational dilemma faced by teachers of
pupils with physical disabilities. It was found that
the special performance problems of pupils with
physical disabilities forced the teachers to choose
between emphasizing either the aspect of doing or
the aspect of knowing when teaching pupils with
physical disabilities. Performing a task often
reduced time for reflection and understanding.
Therefore, in classes where teachers emphasized
learning by knowing, the assistants sat close to the
pupil to compensate for all the obstacles caused by
the pupil’s difficulties in doing. These findings also
indicate that, in general, support was organized to
promote participation in learning, but the teachers’
perspective of how participation in learning could
best be realized influenced how the help was pro-
vided. Thus, the teachers who had the highest com-
petence and therefore the overall responsibility for
the class set the stage for a certain type of assistance.
The Classroom
The features of the classrooms also seemed to
influence what type of assistance was provided. The
classes in which the back-up assistants worked had
been planned specifically for pupils with disabilities.
The physical environment itself and all utilities in
these classrooms were carefully arranged to enhance
the pupils’ task performance. For example, Jane was
able to write by herself because of the technologically
advanced writing system installed in her classroom.
The adapted environment decreased the pupils’ need
for close assistance and seemed to create opportuni-
ties for the back-up type of assistant in these classes.
This interpretation was confirmed when the special
educational class sometimes participated in regular
classes. On these occasions, the back-up assistants
had to be in close proximity to the pupils.
The assistants who acted as stand-ins for the pupil
or as help-teachers worked in classes that were pri-
marily organized for pupils without disabilities.
Here, technical aids were lacking and no special con-
sideration had been made for such things as how the
materials in the class were organized to enhance
independence for the pupil with disabilities. Thus,
inaccessible environment and lack of assistive
devices in these cases might have contributed to the
need for the assistant to sit close to the pupil.
Pupils’ Lack of Influence
A striking finding was that none of the pupils had
much influence over the type of assistance provid-
ed, and they had little control over when and how
support was given. The pupils could ask for or resist
help, but the assistants usually made the decisions
about whether help was needed. For example, the
back-up assistant might withhold assistance to train
self-care skills and the stand-in assistant might give
support without request. The pupils never ques-
tioned the assistance. Rather, they took the support
given for granted in the same way that they took the
teacher’s role for granted. Thus, in general, the type
of assistance was shaped and dominated by the
adults in the classroom, beyond the pupils’ influ-
ence and active participation.
Pupils’ Desire for Social Participation
Another interesting finding was that, when dis-
abled pupils were allowed to choose, they often pre-
ferred to perform activities without help or with a
minimum amount of assistance. Refusing help
might be understood as the pupils’ striving to man-
age without adult guidance (Nucci, Killen, &
Smetana, 1996). Another way of understanding the
pupils’ tendency to reject help is that they wanted to
avoid everything that made them different from
their able-bodied peers (Quinn, 1998).
On some occasions, however, pupils willingly
accepted all help they could get. Our analysis
demonstrated that the determining factor for assis-
tance being accepted was whether the support facil-
itated social participation. Jane, who always wanted
to perform independently in the special educational
classroom, preferred to participate in a regular class
even though that meant she needed help in nearly
everything that she had to do. Thus, although Jane
stated a desire to perform her school activities as
independently as possible, she willingly accepted
help if it gave her opportunities for social participa-
tion with non-disabled peers. Accordingly, if assis-
tance increased opportunities for social participa-
tion, then it was appreciated. On the other hand, if
pupils believed that the assistant’s support threat-
ened their inclusion in the group in some way, they
tried to avoid that sort of support.
The Assistants’ Influence on School Life
In this section, we describe how the help provid-
ed influenced school life, and especially what the
consequences were for the lives of the pupils with
disabilities.
Summer 2003, Volume 23, Number 3 93
Pupils’ Interaction With Teachers. The stand-in
assistant’s close proximity sometimes seemed to
block the pupil’s opportunities for interaction with
his or her teacher. It seemed as though the teacher
sometimes perceived the assistant and the pupil to
be the same person. Comments on the pupil’s
behavior were given to the assistant rather than to
the pupil himself or herself. It was also common that
the teacher gave instructions to the assistant instead
of to the pupil with disabilities. The following obser-
vation from a lesson in crafts illustrates this:
All pupils in the class were working on individual
assignments and the teacher was walking around
the room providing help if needed. Tom was sewing
a ball. The teacher went past and asked, “How is it
progressing?” “I think it is working fine,” the assis-
tant answered. The teacher took Tom’s piece of
material and showed the assistant how to continue.
The teacher did not seem to notice Tom, who had to
stretch his neck to be able to see what he was sup-
posed to do.
The help-teacher assistant’s regular presence
when the teacher interacted with the pupil seemed
to decrease the pupil’s communication with the
teacher. Adapting assignments and arranging alter-
native forms of examinations also transferred some
of the teacher’s role to the assistant. As a conse-
quence, the teacher was sometimes uncertain
whether the pupil with disabilities had learned
something and exactly what the pupil was able to
do. Mary’s teacher said:
Sometimes it strikes me that I might have insuffi-
cient knowledge about her disabilities or pay insuf-
ficient attention to her needs since the assistant is
always there for her in the first place. Actually, I
might know less about her than I would have
known had she not had an assistant.
In contrast, the boundaries between the back-up
assistant and the teacher’s own role appeared to be
rather clear. Teachers took the educational initiative
and responsibility during the lessons, and the assis-
tants were in charge during breaks. Sitting outside
the group of pupils made room for teacher–pupil
interaction. However, the assistant’s approach of
giving priority to the training of practical skills dur-
ing both breaks and lessons often put the pupil with
disabilities at a disadvantage both socially and edu-
cationally.
Assistance and Peer Interaction. The type of help
provided also influenced peer interaction during
lessons and breaks. The intensive support given
during lessons by the stand-in assistant sometimes
had the result that classmates demonstrated signs of
jealousy. For example, Tom often did well on exam-
inations and his classmates sometimes seemed to
think that the assistance provided him with an
unfair advantage. Both the assistant and the teacher
understood the classmates’ point of view because
many pupils in the class needed similar help, such
as reading aloud and rewording questions at exam-
inations. Tom’s assistant related what happened
when it was decided that he should have access to
assistance during an examination: “One of his class-
mates thought it was unfair and the class ended up
in uproar. Since then he has refused my help in
examinations and always wants to do everything by
himself.” The unfortunate result was that Tom had
access to assistance in writing and reading during
class, but had to manage without this help during
examinations.
Close proximity of the assistant to the pupil also
decreased the pupil’s opportunities for peer interac-
tion during lessons. Although the other pupils
sometimes talked and interacted during the lessons,
Tom did not participate because the assistant
observed him whenever he tried and redirected him
to his task.
The help-teacher assistant was often aware of the
importance of peer interaction for social participa-
tion and the fact that some classmates might feel
envy because of the attention the disabled pupil got.
These assistants used different strategies to avoid
this. Classmates were invited to participate in alter-
native forms of examinations and were included
when alternative activities were arranged in sports
or during outdoor days.
Help-teacher and back-up assistants who were
accessible during breaks could support the pupil
during this part of school life if needed. One of
Ryan’s problems was interaction with classmates
and he appreciated the company of the assistant
during the breaks. The assistant supported social
interaction by inviting other boys to participate in
games. The assistant said, “I have noticed that Ryan
is very pleased when the other boys play cards with
us as he gets a chance to talk to them and participate
in a peer group. Otherwise, there are not actually so
many that talk to him.”
When Educational Participation Conflicts with
Social Participation
These examples illustrate that the help provided
influenced the pupils’ opportunities for participa-
tion both socially and educationally. Participation in
learning might go hand in hand with social interac-
tion. However, sometimes efforts to facilitate partic-
OTJR: Occupation, Participation and Health
94
ipation in learning conflicted with social life during
breaks and the pupil’s opportunities to be included
and accepted in a peer group. Thus, promoting par-
ticipation by providing assistance in one area of
school life might threaten the pupil’s opportunities
to participate in another area of school life.
In general, assistance was organized to facilitate
participation in learning activities. As indicated pre-
viously, promoting such participation sometimes
reduced the pupil’s opportunities for interaction
with peers. This was not done intentionally, but
rather could be understood as a consequence of the
type of support that emerged, as shown in the pre-
vious example where the stand-in assistant prevent-
ed the pupil with disabilities from inappropriate
peer interaction during lessons. From a learning per-
spective, this seems to be the right decision.
However, seen from the perspective of social inter-
action with peers, the assistant’s decision was coun-
terproductive.
On the other hand, pupils with disabilities
seemed to prioritize social participation in the
meaning of being accepted and included in a peer
group. When participation in learning activities
threatened social participation, the pupils tended to
give priority to social participation. Tom demon-
strated this when he resisted help during examina-
tions because of his classmates’ protests. Denying
the help needed during an examination means run-
ning a risk of getting a bad result. However, the pos-
sibility of getting his classmates’ disapproval
seemed to be more threatening for him than failing
examinations. All pupils, with or without disabili-
ties, might experience incoherent expectations from
their teachers and their peers and, depending on the
circumstances, they might act to find a personal
compromise. Findings from this study show that
pupils with disabilities who need help do not have
the same opportunities as other pupils to make per-
sonal decisions in these matters. Denying assistance
was one possible option, as this example also illus-
trates.
Our findings also indicate that social interaction
can sometimes go hand in hand with and even
increase opportunities for participation in learning
activities. The help-teacher assistants who were
aware of the importance of peer interaction for par-
ticipation tried to include the classmates when spe-
cial solutions were offered to the pupil with disabil-
ities. Here, the assistants were aware of the potential
conflict between different kinds of participation.
Including peers in the special solutions for the
pupils with disabilities was a strategy to increase the
disabled pupil’s opportunity to participate in learn-
ing without threatening social participation.
Discussion
Amajor finding in this study was the complexity
of facilitating participation by an assistant. This
complexity can be summarized as an interdepend-
ent relationship between: (1) the teacher’s perspec-
tive, (2) the assistant’s way of providing the help, (3)
the disabled pupil’s priorities in school concerning
learning and social participation, (4) the classroom’s
features, and (5) classmates and their way of per-
ceiving the support and its impact on their own sit-
uation. In this interplay, the aspect that seemed to
have the most importance was the tension between
learning and social participation as expressed by the
action and priorities of teachers, assistants, and
pupils. Tension was created by the incoherence of
priorities from the people involved. In turn, this
conflict in priorities sometimes precluded appropri-
ate support being given to the pupil with disabili-
ties, which in turn might influence the pupil’s over-
all participation in class.
The next major finding was that the pupils
seemed to prioritize social participation in the mean-
ing of being accepted and included in a peer group.
Extensive literature on normal child development
confirms the importance and priority of social inter-
action among preteens and teenagers (McAnarney,
1985; Quinn, 1998; Vander Zanden, 1997; Williams &
Downing, 1998). Furthermore, research indicates
that peer interaction in school may be even more
important for pupils with disabilities because of their
limited contact with others outside of school
(Armstrong, Rosenbaum, & King, 1992; Blum,
Resnick, Nelson, & St. Germaine, 1991; Skär &
Ta mm , 2 00 1; S te v en s e t a l ., 1 99 6; We st b om , 1 99 2) .
However, assistance was first and foremost arranged
to facilitate participation in learning. Thus, if assis-
tance to facilitate learning conflicted with the pupil’s
desire for social participation, the pupil tried to
avoid such support. This finding has been supported
by Skär and Tamm (2001), who investigated how
children with physical disabilities perceived their
personal assistant at home.
Another interesting finding was that facilitating
social participation might also increase opportuni-
ties for participation in learning. Findings indicate
that the assistants who included classmates in reach-
ing special solutions to avoid jealousy made these
solutions more readily accepted by classmates. This,
in turn, increased the opportunities to use these
solutions without the risk of the classmates’ disap-
proval. On the other hand, if the assistant was
unaware of the classmates’ reactions, it might result
in a situation in which it was impossible to imple-
ment the support needed. Thus, although learning is
Summer 2003, Volume 23, Number 3 95
the overall goal of school personnel, our findings
show that neglecting the pupils’ desire for social
participation may impact not only opportunities for
social participation, but also learning opportunities.
In agreement with other studies (Ainscow, 2000;
Giangreco et al., 1997), our findings showed that the
assistant might reduce the pupil’s interaction with
teachers and classmates. The proximity of the assis-
tant has been one explanation for the interference
(Giangreco et al., 1997). Giangreco et al. (1997) inves-
tigated the effect the use of instructional assistants
had on a group of deaf and blind children with cog-
nitive delay and asserted that the proximity in itself
was counterproductive and negatively affected the
interaction with teachers and peers. However, the
analysis from this study pointed out that the picture
was complex and ambiguous as far as the results of
this interaction were concerned. Reduced social
interaction and positive learning outcomes may
occur simultaneously, thereby revealing that the
assistant may be both a facilitator and a hindrance.
This type of ambiguity has not been described in
other studies. Some of the negative effects of assis-
tance seemed to be almost unavoidable and the
price of having access to an assistant, whereas oth-
ers seemed to be the result of inadequate attention
being paid to the pupil’s needs and were therefore
rectifiable.
The design of this study allowed a more detailed
picture of how help may be provided to pupils with
disabilities attending school. Considering that these
pupils are often provided an assistant to facilitate
their school participation, the effect of this common
intervention (Giangreco et al., 1995; Jerwood, 1999)
has had limited examination and discussion. We
recommend that future studies further examine how
assistants and other environmental modifications
influence opportunities for participation in school.
In theories of environmental influences on occu-
pational behavior, emphasis is placed on how the
environment can both hinder and facilitate certain
types of behavior (Dunn, Brown, & McGuigan, 1994;
Kielhofner, 1995). However, it is difficult to find
empiric data that describe this relationship in detail
in the literature. Observations in this study show
how the environment can have an impact on pupils
with disabilities and that a certain type of environ-
mental modification can result in both intended and
unintended effects. Our findings indicate that such a
small environmental modification as the variation
found in the assistant’s position in the classroom
had important consequences for each individual’s
behavior (i.e., the pupils, the assistants, and the
teachers). Being aware of how the seating may influ-
ence the behavior of the assistant and the pupil will
improve the planning of individually tailored and
flexible assistance.
So far, our discussion has concerned participation
in school. However, the findings might also have
implications for the concept of participation in gen-
eral. The definition and measurement of participa-
tion are of the utmost importance because they will
affect decisions and priorities relevant to the provi-
sion of support to people with disabilities. Further, it
will influence how interventions should be designed
to support participation. Our findings indicated that
pupils with disabilities prioritized social participa-
tion in the meaning of being included and accepted
in a peer group. It is interesting to note that being
included and accepted by peers seemed to be of
more importance than being able to actually perform
school assignments.
When participation is operationalized as per-
formance, as in the ICF (World Health Organization,
2001), there is a risk that the individual’s experience
of participation and other aspects will be excluded.
Moreover, classifying participation by performance
will always give those with the most profound
physical disabilities the lowest scores. These find-
ings support the suggestion made in the ICF that the
scoring of participation might be further refined so
that the person’s experience and feeling of involve-
ment or satisfaction with the level of functioning can
be included in the classification (World Health
Organization, 2001).
Although not the focus of this article, a striking
finding was the limited influence pupils had over
when and how help was provided. From a partici-
pation point of view, this finding could be classified
as inadequate participation in decision-making.
Considering that the assistant followed the pupil
from morning to afternoon, this lack of influence in
everyday school life is noteworthy. However, from a
general child–adult perspective, it is understandable
that adults take a main part of the responsibility in
decision-making. Still, involvement in personal
decisions is important for developing autonomy
(Fuligini, 1996; Nucci et al., 1996; Quinn, 1998).
Opportunities to reflect over choices and make deci-
sions concerning one’s own existence allow the
child a sense of self-efficacy at a time when children
strive to establish themselves as autonomous indi-
viduals (Myers, 1999; Nucci et al., 1996; Quinn,
1998). This development includes practice and
developing competencies in these areas. This is
especially important when one keeps in mind the
fact that handling personal assistance might remain
an issue for the person with disabilities throughout
his or her whole life.
Alimitation of the study is the small sample size.
OTJR: Occupation, Participation and Health
96
However, the purpose of the research was to
increase the understanding of the phenomenon
addressed within a given context. The results sec-
tion includes rather “thick” and descriptive data. In
addition, the argument for the interpretations is pre-
sented in the text. This is a strategy to enable the
reader to evaluate the applicability of the data to
other contexts (Gliner, 1994; Gustavsson, 2000;
Patton, 1990), but also an attempt to provide a deep-
er understanding of the participants’ situation
(Gliner, 1994). This new or deeper understanding
may in turn increase the possibilities for informed
actions for those working in similar situations
(Patton, 1990).
This study contributes to the theoretical under-
standing of interventions in the school setting to
enhance participation by pupils with disabilities.
Therefore, the study is relevant for occupational
therapists, teachers, and assistants. The findings
have implications for the development of flexible
assistance tailored to pupils with disabilities. One
implication from our study is that one must have an
awareness of the ambiguity of facilitating participa-
tion if one is to be able to organize and plan a flexi-
ble assistant role that might give priority to learning
participation in some situations and social participa-
tion in others. Being aware of how the position of the
assistant’s seating guided the behavior of both the
assistant and the pupil might also be helpful when
planning assistance.
Further, it is important to consider that pupils
may avoid help if it threatens social participation.
There is not only a dilemma between what support
is most beneficial, but also a strong need to under-
stand the pupils’ own priorities for social participa-
tion. Support to promote the participation of pupils
with physical disabilities in school has to involve the
pupils in the decisions governing how the assistance
is provided and must take account of the pupils’
perspective to ensure that social participation is not
threatened by the help provided.
Acknowledgments
The authors thank all of the pupils, assistants, and
teachers who participated in this study. This study was
supported by grants from Stiftelsen Groschinskys
Minnesfond and Norrbacka-Eugenia Stiftelsen.
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OTJR: Occupation, Participation and Health
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... Истражујући у Шведској улогу школских асистената у процесу социјалног укључивања деце са сметњама у развоју школског уз-раста (од 7 до 15 година), од којих је петоро било са дијагностикованом церебралном парализом, Хемингсон и сарадници (Hemmingson et al., 2003) закључују да социјална ексклузија подразумева искључивање које отежава, односно онемогућава стицање како образовних, тако и социјалних искустава која испитаници истичу као најзначајнија. ...
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У овој монографији анализирали смо студије које се баве социјалном партиципацијом особа са инвалидитетом, са посебним нагласком на особе са церебралном парализом и особе са мултиплом склерозом. Циљ истраживања је дефинисање релевантних фактора који о(не)могућавају социјалну партиципацију особа са инвалидитетом. У литeратури се могу наћи студије које су се бавиле социјалном партиципацијом и функционалним способностима особа са инвалидитетом које су инвалидитет дефинисале у складу са Међународном класификацијом функционисања, инвалидитета и здравља. Међутим, већина студија се ослања на традиционалне дефиниције инвалидности, које инвалидитет посматрају кроз симптоматологију церебралне парализе и мултипле склерозе и лимитиран одабир активности свакодневног живота. Анализиране су оне студије које су у својој методологији истраживања и опису социјалне партиципације користиле биопсихосоцијални приступ. Потврђена је основна претпоставка, да је квалитет социјалне партиципације особа са инвалидитетом нижи од нивоа који се може достићи у односу на њихове преостале способности. In this monograph we have analyzed the studies focused on the social participation of people with disabilities with a special emphasis on the people with cerebral palsy and people with multiple sclerosis. The aim was to define the relevant factors that are the facilitators or the barriers to social participation of people with disabilities. In the literature, studies that have dealt with social participation and functional abilities of people with disabilities and have been based on the definition of disability according to International Classification of Functioning, Disability and Health, can be found. However, most studies have relied on the traditional definition of disability, the disability seen through the symptoms of cerebral palsy and multiple sclerosis and a limited selection of activities of daily living. Therefore, the studies which have been using the biopsychosocial approach in their research methodology and description of social participation have been analyzed. The basic assumption, that the quality of social participation of people with disabilities is below the level that can be achieved in accordance with their remaining abilities, has been confirmed.
... Neben akademischen (kognitiven) Fertigkeiten werden dort auch wichtige kindliche Rollen erlernt und geübt (Barnes/ Beck 2010, Lowe/Chapparo 2010, Rodger/ Ziviani 2006. Durch Teilhabe in diesem Lebensbereich entwickeln Kinder emotionale, soziale, kommunikative, intellektuelle und motorische Fertigkeiten (King et al. 2003 (Asbjørnslett/Hemmingsson 2008, S. 157;Hemmingsson et al. 2003, Whiteford/Pereira 2012. Es ist gerade für SchülerInnen mit Behinderungen z.B. äußerst wichtig, Pausen nicht aus pragmatischen Gründen im Klassenraum zu verbringen, etwa weil der Transfer vom Therapiestuhl in den Rollstuhl und der Weg auf den Pausenhof zu (zeit)aufwändig erscheint oder -auch mangels Barrierefreiheit -schlicht unmöglich ist. ...
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