Order 1029111: Family-centred practices

9 1

‘ Not just being Accepted, but Embraced ’: Family Perspectives on Inclusion

5

Kathy Cologon

CHAPTER OVERVIEW

By developing an understanding of the lived experiences of families, early years professionals can understand more deeply what it means to be included. This chapter will consider the implications of child and family experience for early years professionals.

Learning goals for this chapter include:

› Considering the importance of inclusion and inclusive education to families;

› Understanding family perspectives on what inclusion means;

› Recognising barriers to inclusion for families who experience disability;

› Reflecting on the role of early years professionals in working with families, resisting stigma, disestablishing ableism and, ultimately, facilitating inclusion.

KEY TERMS AND CONCEPTS

belonging

opportunity

participation

recognised contribution

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9 2 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

Introduction There are many challenges that families report regarding inclusion, exclusion

and the experience of disability. However, these challenges are often different

to the assumed challenges that dictate the broader social narrative. The tragedy

model of disability is pervasive and leads to many assumptions regarding

families who experience disability. In particular the assumption that being

labelled as having an impairment, or having a child labelled with an impairment,

is necessarily a negative experience (Green, 2003, 2007; Haraldsdóttir, 2013;

Skitteral, 2013).

It is now commonly acknowledged that family understandings are

embedded within a socio-cultural, socio-historical context. This means that

family perspectives and experiences change over time. However, it is less

commonly acknowledged that the ways in which researchers and early years

professionals interpret and engage with families is also informed by socio-

cultural and socio-historical contexts (Ferguson, 2002). This underlines the

importance of genuinely listening to families, rather than mistakenly falling

back on stereotypes or assumptions about family experiences.

There are many stressors on families, including families who experience

disability—particularly in relation to the social construction of disability.

However, as Ferguson (2002) argues, the most important thing that happens

when a child who experiences disability is born is that a child is born and

the parents become parents of that child. While it may be an unexpected

initial shock, for most families the experience of tragedy in parenting a child

who experiences disability (or in experiencing disability oneself) is in the

response of society, not the child (Derbyshire, 2013; Ferguson, 2002; Green,

2007; Haraldsdóttir, 2013). While not in any way making light of the challenges

and barriers families encounter, listening to families, rather than making

assumptions, uncovers the many positive aspects of living life as a family with

a member who experiences disability (Derbyshire, 2013; Ferguson, 2002; Green,

2007; Haraldsdóttir, 2013). We also learn that support assists families to adapt

and to resist a tragedy understanding of disability and of themselves and the life

of their family (Ferguson, 2002; Green, 2007).

In this chapter I will draw on family views about inclusion. This is important

in developing an understanding of family perspectives that moves beyond

research that has been directed by assumptions and stereotypes (Ferguson,

2002). As Green (2007, p.151) argues, ‘Parents of children with disabilities

must raise their children within the context of powerful societal discourse that

devalues adults with disabilities and, therefore, holds low expectations for the

ultimate “success” of parenting children with disabilities.’ Similarly, adults

who experience disability face many barriers and stigma around parenting

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9 3C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

(Kilkey & Clarke, 2010; McConnell & Llewellyn, 2002; Robinson, Hickson &

Strike, 2001; Russell & Norwich, 2012). Given the importance of family-centred

practice (see Chapter 9), seeking to understand family perspectives is essential

in the everyday practice of the early years professional. Consequently, this

chapter draws on research with families in Australia, the USA, Iceland and the

UK, including from 114 Australian families who have participated in a larger

research study with me (with 121 participants, including families with older

children), exploring experiences of inclusion and exclusion in the early years.

The families in my research are a diverse group. They come from a range of

cultural backgrounds and live in urban and remote locations. Family makeup

is also diverse. Each of these families have in common that at least one child

in the family is labelled disabled. Diagnoses include: autism spectrum disorder

(ASD), Down syndrome, Attention Defi cit Hyperactivity Disorder, cerebral

palsy, intellectual impairment, sensory processing disorder, language disorder,

hydrocephalus, Beckwith–Wiedemann syndrome and global development

delay. Many of the children in the research have multiple labels. The focus of

my research was on the early years experiences of these children. The children

were aged between 1–12 years. Slightly more than half of the children were boys

(53 per cent). The formal education backgrounds of the parents ranged from

Year 10 through to postgraduate university studies. Throughout the chapter I

will seek to allow the families to speak for themselves and for their voices to

come through.

FIGURE 5.1 FAMILY

Artwork by Emma

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Cologon, K. (2014). Inclusive education in early years : right from the start. Retrieved from http://ebookcentral.proquest.com Created from csuau on 2018-05-07 18:42:29.

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9 4 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

Importance of inclusion I would like to begin with considering the importance of inclusion to the

families in my research. Of the 114 participants, only one family reported that

inclusion was not important to them. For this family, their comments refl ect a

response to experiences of exclusion leading to the view that inclusion is not

possible for their family:

Obviously it [inclusion] is important for those who have the intellectual and

emotional capacity to participate in normal social and educational situations

… My Autistic child is unable to keep up with the social and academic

demands of a normal classroom. He is not even toilet-trained at the age of 9,

so most schools simply will not have the facilities to look after his physical

needs through the day. Anywhere that he goes, he has to be accompanied

and controlled by a carer. Although we take him to cafés and restaurants and

beaches, he is unable to integrate in a normal way. On the other hand, we do

try to include him wherever possible—as in attending church and Sunday

school—but unless he develops normal communication ability and stops

running away into danger, inclusion in most circumstances is simply not

practical … Even the supported class at a local school would not take him in,

because he was not as advanced as the other children, and needed too much

physical care (being incontinent). (Family #13)

The other families in this research reported that inclusion was highly

important to them. These families focused on the importance of inclusion

‘because it is fair’ (Family #6) and because it is a basic human right; for

acceptance, living of life, to increase life opportunities, acceptance and

tolerance; for happiness, friendship and community (and to avoid isolation);

for education and development of the child, peers, family and society; to ensure

every person can contribute and be valued for their contributions; and as a

fundamental aspect of belonging. For example:

To be included in any setting is a fundamental desire of any human being.

To be accepted for who we are is something we all want as adults, to be

included and accepted as a person with a disability even more so, as that

person already knows that they are different to the majority, they only require

people to look past the obvious and see the person that they are. (Family #8)

People are more like each other than they are different and society is better

if we value each person who is a part of that society—we are interdependent

beings and every person has something to offer every other person if we take

the time to notice. (Family #77)

Everyone wants to be welcome, to have friends, to have a place. (Family #109)

Consistent with the research evidence explored in Chapter 1, families

suggested that inclusion is important, not only for themselves and their

children, but for society:

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9 5C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

We believe it is our daughter’s right to be included in all aspects of society. We

believe that our daughter benefi ts greatly from being included for example

developing friendships and learning skills. We also believe that others benefi t

from her inclusion for example from learning to accept others. (Family #85)

Inclusion is important for all human beings, it provides a feeling of safety

and being valued by those around you. (Family #105)

Inclusion is important to allow all members of my family the ability to

participate in society with the same equality and opportunities. And to

educate all of society about the strengths and abilities of people who have a

disability. (Family #107)

For some families the importance of inclusion was emphasised on account

of the negatives of exclusion:

Exclusion is hateful. It stops us from achieving our potential. It limits our

abilities. It takes joy and achievement from life. (Family #86)

It is only real-life that offers real, ordinary development for children. Brothers

and sisters should be together as other families are. Segregated, congregated

education teaches how to be disabled intellectually and socially thereby

increasing a person’s impairment. (Family #69)

I have two wonderful boys who have much to experience and to give, they

can only do that to the extent to which those around them allow it. When they

are excluded in any way they learn that they are ‘disabled’. (Family #119)

Families reported that experiences of inclusion led to happiness, a positive

outlook on life, progress and development for the family, feelings of pride and

of being valued and simply that inclusion was a wonderful experience. The

desire for respect for every child, for inclusion to be ‘ordinary’, and for children

to be viewed simply as children, was important to the families in this research:

Nothing less, nothing more, nothing extraordinary, just the same. (Family #75)

Similarly, in writing of her own experiences growing up with impairment in

Iceland, Haraldsdóttir (2013, p.21) shares that critical to her developing identity

was her parents’ view of her as simply a child, ‘Nothing more. Nothing less’.

Haraldsdóttir argues that her family’s focus on inclusion as an ordinary part of

life was essential to her amid many challenges in a disabling society.

The meaning of inclusion Every child should have total acceptance, and feel equal as well as unique.

(Family #83)

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9 6 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

To understand the importance of inclusion for families and to consider what

this means for everyday early years practice, we also need to understand what

families view inclusion to mean. In analysing the family responses in this

research, four themes emerged that explained the meaning of inclusion to these

families:

› Inclusion is belonging;

› Inclusion is participation;

› Inclusion is opportunity;

› Inclusion is recognised contribution.

INCLUSION IS BELONGING Belonging emerged as a key aspect of inclusion for families in this research:

Belonging is a fundamental right—in that it is value, respect, acceptance

of people. Inclusion to me is like belonging—the ability of my children to

join in with any activity reinforces their rights to belong, have a go, to fail,

succeed, to be cared for regardless of how it goes. (Family #82)

Within the understanding of inclusion as belonging, being valued and

welcome were fundamental aspects of inclusion:

Not just being accepted, but embraced. (Family #73)

Being supported to live a valued life in the same way as other Australian

citizens—through culturally valued settings including school, work and

home and through culturally valued activities, events and opportunities.

(Family #77)

No feeling of being left out, behind or unwelcomed. (Family #65)

Inclusion was also viewed by families as requiring each person to be valued

as an equal, without conditions placed on belonging:

Never having anyone think twice about whether or not the person with the

disability will participate along with everyone else who does not have a

disability. (Family #88)

An opportunity for the child to be included and their differences respected

and accepted. For the child and their family to be accepted in social

and  educational situations as equal members of the group with other

members understanding, respecting and accepting their needs and abilities.

(Family #95)

belonging: ‘Knowing where and with whom you belong … Belonging acknowledges children’s interdependence with others and the basis of relationships in defining identities’ (DEEWR, 2009, p.7)

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9 7C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

CASE STUDY 5.1

Fish and friends In research in the UK, Billie Tyrie (Tyrie, 2013, p.12), who is eight years old, shared this story about her family and her younger sister, Stevie:

[O]ne day, when we went to the aquarium, my mum, my dad and I were sitting down a little way away from Stevie. Stevie was looking at the fish in the tank and a little girl came over and started talking to her. She asked Stevie’s name and told Stevie that she was called Ella. Stevie and Ella talked about the fish and which ones they liked best. Stevie told Ella all about being born too early and explained why she was in a wheelchair. Ella told Stevie she would be her friend. When we got home Stevie said it was the best day ever! It would really make me and Stevie so happy if people treated Stevie like this little girl did.

1. Consider Billie’s story. What might be important in this story for Billie and

Stevie? 2. What does this story suggest about the other experiences that Stevie and

Billie have had? 3. Reflect on Billie and Stevie’s story in light of the views of families about

inclusion as belonging.

CRITICAL REFLECTION

QUESTIONS

FIGURE 5.2 WHALE-SHARKS

Artwork by Charbel

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9 8 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

INCLUSION IS PARTICIPATION As discussed in Chapter 1, belonging is widely considered to be critical to

inclusion and to positive human experiences (DEEWR, 2009; Jones, 2002;

Nutbrown & Clough, 2009). However, belonging is based on valued participation

(Dockett & Perry, 2005). Consistent with these arguments, families in this

research viewed participation as integral to inclusion and intertwined with

belonging. This suggests that inclusion is

Being able to fully participate in the community. Having people and

organisations make accommodations to enable us to do so. (Family #45)

Where every effort is made to allow anyone to have the fullest experience

possible of an event (school, reading, sport) as a true participant. Inclusion

should not be an act of toleration or a token gesture but a genuine belief in the

rights of people to belong, have a go and participate to their greatest ability.

(Family #82)

INCLUSION IS OPPORTUNITY Participation does not occur without opportunity and, likewise, participation

and belonging facilitate further opportunities. Access to opportunity emerged

as a key aspect of inclusion for the families in this research:

Opportunities for a person to participate in educational and social activities

with other people who have no disability. (Family #13)

Giving children with disabilities the same level of opportunity all children

without disabilities are offered. (Family #67)

Same opportunities to all. Inclusion in education does not distinguish

between ‘general education’ and ‘special education’ programs; instead, all

students learn together. (Family #118)

INCLUSION IS RECOGNISED CONTRIBUTION The fi nal theme that describes the understanding of inclusion shared by the

families in this research is inclusion as recognised contribution . Families

reported that inclusion, which they understood to be dependent on belonging,

participation and opportunity, requires being valued for the contribution that

you make to the family, community and society:

Inclusion means all people are able to contribute to their community and

have their contribution recognised while fully participating in their society

and having their differences and the contribution those differences make,

valued. (Family #120)

participation: Being involved and taking part, through action, along with others.

opportunity: Circumstances, a situation or an occasion that makes it possible to do something, achieve a goal, or develop.

recognised contribution: Contributions made by a person or group that are recognised and valued by those around them.

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9 9C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

When a person is fully included in all aspects of life, and seen as a contributing

member of society. (Family #94)

All people participating fully and being valued members of the community.

(Family #121)

These families view their children as valuable, worthwhile human beings

who are living their lives and contributing positively to the family and to the

world. These families reported that their children could not be truly included

without others recognising what their children have to offer.

Taken together, these four themes—belonging, participation, opportunity and

recognised contribution—illustrate the meaning of inclusion for the families in

this research. For some families, this understanding of inclusion was developed

through experiencing inclusion. For others it was through experiencing

exclusion. Experiences of inclusion for these families were characterised by

acceptance, occurred in mainstream settings and involved appropriate support

where required. These perspectives and experiences shared by families provide

important insights for inclusive early years practice. However, the families also

shared many barriers to inclusion.

Barriers to inclusion Ableist social views (see Chapter 2), resulting in stigma (see Chapter 1), formed

the dominant barrier to inclusion for families in this study. This included fear,

resulting in negative, exclusionary and ignorant attitudes, as well as apathy

to change. Lack of valuing the child and lack of recognition of the child’s

contribution to the setting and community was identifi ed as a major barrier to

inclusion:

[We were] asked to leave day-care [when he was] a two-year-old. Relatives

buy presents for other children but not him because he ‘doesn’t know so it

won’t matter’. Unable to attend family functions, have to leave public places.

(Family #65)

While walking down the street of a major inland city, my two sons aged four

(who has Down syndrome) and 13 were walking behind me. Apparently a

couple stared and commented to each other in the hearing of my children

‘people like that shouldn’t be let out in public’. My eldest son was so

devastated he didn’t tell me of this event for some years. (Family #86)

Families reported lack of support and education for inclusion, which

compounded the fear and stigma. This includes a lack of education on inclusion

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1 0 0 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

for early years professionals, families and the community and an unwillingness

or lack of knowledge regarding making pedagogical adaptations. For example:

Lack of knowledge. People not wanting to be out of their comfort zone,

wanting to do things the way it’s always been done. Not enough training

done when people are going through university as to what true inclusion is

for children going through the school system. Special schools and support

units are not where you will fi nd real inclusion, but this is where teaching

students are shown about disability. (Family # 72)

Maths lessons in grade 4 with my twins with intellectual disability and mild

cerebral palsy sitting in the corner ‘playing’ with calculators while the rest of

the class did maths. (Family #64)

Our daughter was seated at the side of the class by herself for most of the fi rst

term. There was no reason for this as she is well liked by her peers and as she

has Down syndrome she is a social learner and learns best by being with her

peers. (Family #85)

Families reported encountering frequent misunderstandings of inclusion

where inclusion was viewed as presence, but not as participation and belonging,

or where inclusion was misunderstood as assimilation. Families also identifi ed

common exclusionary education practices, including:

› Lack of respect for the child;

› Lack of openness to embracing diversity;

› Lack of communication;

› Stereotyped views, assumptions and unexamined preconceptions;

› Failure to get to know and build a relationship with the child;

› Lack of knowledge of and respect for the child and family’s goals;

› Rigidity/lack of openness and fl exibility;

› Seeing the label, not the child.

Stigma playing out in the form of low expectations, or a presumption of

in competence (Biklen & Burke, 2006), was a common barrier encountered by

families in this research. This was exacerbated by a focus on competitiveness

and outcomes at any cost, coupled with the assumption that the child poses a

threat to this:

When a group of mums got a soccer team going we weren’t asked as they

wanted to be competitive and felt it may be too diffi cult for [son]. (Family #83)

Rejection from a dance school that claimed to be ‘relaxed and friendly’—said

no without even asking about my daughter specifi cally after I gave them the

label of her disability. Also she is excluded at school when she is withdrawn

to work with an aide. (Family #115)

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1 0 1C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

She was placed in a ‘unit’ within a primary school. This teacher refused to

integrate her into mainstream. They shut the door and I think watched DVDs

most of the day. (Family #92)

Similarly, Derbyshire (2013, p.33), writing of her life in the UK with her

daughter who is labelled with intellectual disability, shares that ‘it wasn’t

Hannah’s additional needs that would be detrimental to her, but other people’s

ill-informed and low expectations of her’.

As for the families in this research, other research in Australia, with mothers

of children labelled with ASD, has found evidence of stigmatisation in relation

to enrolment processes (Lilley, 2013). ‘When a parent mentions the word

“autism”, the process of enrolment is often entirely redefi ned’ (Lilley, 2013,

p.523). One mother in Lilley’s research encountered the following response

when seeking to enrol her son at the local school:

She said straight up to me, ‘No, we don’t take special needs children.’ I said,

‘But you haven’t seen my child; you haven’t asked what the special need is.’

She said, ‘No, we don’t do that’… I was just dumbfounded that they can just

say ‘no’ without even looking at the child or even asking. Just a straight out

‘no’ (2013, p.10).

Led by ‘a sense of social justice’, this mother returned and had another

discussion with the Acting Principal:

When I began I said, ‘I don’t agree with what’s been said here.’ I said, ‘I would

like my child to come to this school.’ She was saying, ‘No, we’re not having

them because it will bring our score down in the school.’ And that’s when

I got really angry. I said, ‘How dare you! You don’t even know my son. He

might bring the score up for you. How do you know he’s going to bring the

score down?’ Then I still put my enrolment forms in and just left it (Lilley,

2013, p.523).

Families in this current research also reported that a barrier to inclusion

was their own exhaustion in the face of continued experiences of exclusion.

For some families this led to them ‘giving up the fi ght’ and to a lack of hope. In

regards to inclusion in the early years, families shared that the fi ght began early

and continued year after year:

Unfortunately some people still like to remind me of the GREAT EFFORT and

EXTRA things that need to be done to maximise my daughter’s participation

at school. This disclosure of effort is the barrier. This is what teaching is—

being responsive, fi nding what works for students, modifying curriculum to

meet levels of ability. The reminders are subtle ways to keep reminding me

this is still possibly a ‘privilege’ to have my child placed at the school and

not her right. (Family #82)

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1 0 2 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

This is echoed in the words of Bridle (2005, pp.2–3): ‘Nowhere … are we

entirely insulated from social views that we are “lucky” to be so included, that

the school is commendable for taking Sean and that perhaps his right to be there

should be considered provisional.’

For some families the experience of enacted stigma includes blame for the

fact that their child has an impairment or even for the very existence of the

child. For example:

I had to overcome a lot of anger … people would say to me: ‘Did you know he

was going to be Downs before you had him?’ Like I would have changed my

mind if I had known and I used to just want to cry right in public. I would be

thinking: ‘What a mean thing to say.’ ‘How could you say that?’ (mother in

Green, 2003, pp.1366–1367)

Some parents shared their experiences of coming to the defence of their

child or themselves:

I was in the supermarket and Danny was playing up. I told him that if he

wasn’t to walk nicely then he could sit in the pushchair. So in he goes and

he’s kicking and fi dgeting and testing all the boundaries. Suddenly, this man

came over to him and said ‘now you just stop that’ and points his fi nger into

Danny’s chest. I went berserk (mother in Goodley, 2007, p.151).

But for some, even knowing where to begin when responding to such

comments remains a constant challenge:

At the shops people will come up to me and say ‘oh, the poor little thing, you

must be so wonderful to look after him’, or ‘oh, they are such little angels

aren’t they, always so happy’. They seem to think my boys can’t hear them

or don’t understand them. I fi nd it so hard to know how to respond. How to

explain that even though they THINK they are being nice actually they are

being horrible. These are my boys. They are not ‘poor little things’ or ‘little

angels’, they are people—and they are listening! (Family #119)

Like this family, Derbyshire (2013, p.32) argues that the most diffi cult

situations to respond to are those where ableism is cased in intended kindness.

She relates: ‘My earliest memory of this was taking Hannah on a children’s

train ride, when she was three years old. I handed the man the right money and

he gave me 50p back, but when I asked why he smiled at me kindly and said,

“don’t worry, I never charge for retards”’.

Whether families develop strategies for responding, or whether they feel

at a loss for what to say, this process can be exhausting as family members

have to constantly deal with ableist views, as well as with regulating their own

emotions and those of others (Green, 2003).

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1 0 3C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

CASE STUDY 5.2

Benefits and dangers of professional support in the early years Lisa Bridle and Glenys Mann are mothers of two boys, Jack and Sean, who have Down syndrome. They wrote of their experiences of early intervention in Australia, along with the experiences of other mothers in Bridle’s research (Bridle & Mann, 2000). Writing of the struggle to have their sons recognised as valuable members of the community, Bridle and Mann highlighted the difficulties with a system that frequently constructs children as ‘different, defective, as a patient, a consumer or client’ (p.11). They noted that ‘[a]s mothers we have been challenged by the struggle between how we see our children and how the world sees them ’ (p.11, emphasis added).

Bridle and Mann emphasise the importance of genuinely listening to and respecting family perspectives and working to understand and share the family’s view of their child. While families do know their children best, they frequently seek advice and look to early years professionals for guidance. Bridle and Mann (2000, p.11) argue:

It is often suggested, and rightly so, that families need to be involved in decision-making processes and that programs need to be built around what individual families want. What worries me is that at this stage many parents don’t know what they want, and are in some way, just ‘surviving’ day to day … Even the most well-intentioned therapist has, potentially, a lot of power over the attitudes that will be developing in this painful and sometimes fragile situation.

This creates some important considerations. Firstly, early years professionals have a significant responsibility to provide accurate and unbiased information to families and to seek to support families in working towards family goals and priorities. Simultaneously, early years professionals need to use their own knowledge and skills to support families in developing goals and strategies that are respectful of the families’ strengths, culture, priorities and needs. However, sometimes interpretations of family-centred practice can leave early years professionals feeling that they have no role to play, and families feeling that they have all the responsibility to develop strategies. One father shared with me that he has fought many battles for inclusion for his son who is labelled with ASD, and has frequently been left feeling that developing strategies and addressing issues of concern is solely his responsibility:

I have had hundreds of meetings over the years trying to get a fair go for him, I have been pitted against a room full of (sometimes up to 16) representatives from all facets of the Education Department including consulting doctors and so forth, and was always amazed that in their view, it was I, that had to come up with all the solutions? My standard response to this was that a room full of university-educated professionals require the Grade 10 drop- out to solve the problems. This always got a laugh but that was about it. (Family #8)

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BARRIERS FOR PARENTS WHO EXPERIENCE DISABILITY People who experience disability are often stereotyped as asexual beings

not capable of parenting (Haraldsdóttir, 2013; McConnell & Llewellyn, 2002;

Skitteral, 2013). This ableist view is, of course, incorrect and many people who

experience disability are parents—thus making up some of the diverse group of

families that early years professionals interact with as part of everyday practice.

Robinson et al. (2001) reported experiences of families in Australia

within which at least one parent experiences disability. Parents were vocal

in recognising the constraints and pressures experienced by early years

professionals. However, for many parents the experience of stigma was a

powerful, negative—and unnecessary—component of everyday efforts to

support their child’s education:

Especially being in a wheelchair, they think that because your legs don’t

work your brain doesn’t work, so then they palm you off by thinking that

‘well, he won’t understand any of it anyway’. (Father) ‘Isn’t it wonderful that

even though he’s got funny parents he’s such a clever child?’ And they never

think that we had any intelligence, we were pretty well miracles walking.

(mother) (Robinson et al., 2001, p.25)

For many parents physical inaccessibility of buildings and lack of willingness

of teachers to accommodate for this was a considerable barrier:

At one stage I needed to see my son’s teacher. At that time, I was in a great

deal of pain and I spent most of my time at home. But I wanted to go and talk

to the teacher. And I sent a written note, because she wasn’t listening to my

son and she was like ‘well, tell your mother when she’s better, then I’ll see

her’. But I didn’t want to see her when I was better because it could take me

a year—I wanted to see her now. And I believe she could have come down to

the hall, or even to the playground and sat with me for fi ve seconds, because

I couldn’t climb stairs, it was as simple as that. (mother) (Robinson et al.,

2001, p.27).

A mother with visual impairment shared that she had been told she was no

longer welcome at the school as the Principal felt she was an embarrassment

1. Consider the barriers to inclusion experienced by families. What role could early years professionals inadvertently play in creating or maintaining these barriers?

2. What role could they play in reducing or eliminating these barriers? 3. What would you need to address in your own practice and beliefs in order to

support families and facilitate inclusion?

CRITICAL REFLECTION

QUESTIONS

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1 0 5C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

because she sometimes fell over due to unexpected barriers in the way (Robinson

et al., 2001).

These challenges—while creating very diffi cult barriers for the families

involved—can generally be easily addressed by the early years settings. For

example, one mother shared that the school moved their parent–teacher

interviews to the library so that they were accessible without having to single

out her or anyone else who uses a wheelchair (Robinson et al., 2001). Another

mother shared that the school asked whether sending home notes in large print

would be helpful (Robinson et al., 2001).

Mothers feature particularly strongly in research relating to families and

disability. However, Kilkey and Clarke (2010) conducted research (in the UK)

with fathers who experience disability. This research reveals complex and

confl icting experiences and fi ndings. Many fathers emphasise the positive

experiences and benefi ts of having more time with children as an impairment

effect (due to less paid employment), but this is complicated by stigma, including

in relation to gender stereotypes about the role of mothers and fathers in raising

children—coupled with the process of disablement:

I loved spending time with my son and staying at home but I felt it wasn’t the

right thing. I just felt I should be the main breadwinner … My life drastically

changed; I wouldn’t have even considered being a stay at home dad prior

to my accident but I think the fact that there was a possibility it just made

me feel less of a, I suppose it sounds really bad against women, but it made

me feel less of a man being the person who was provided for instead of

providing for. (Kilkey & Clarke, 2010, p.137)

Another father in this study also shared that some of the most diffi cult

challenges related to gender roles and the stigma around what is perceived by

some to be non-masculine. Speaking of a lack of acceptance in mother’s groups,

this father shared that ‘one of the hardest things has been not as a disabled dad

but as a stay at home dad; it’s hard being accepted in some circles’ (Kilkey &

Clarke, 2010, p.138).

A common societal assumption regarding parents who experience disability

is that their children take on the caring role. This stigmatising assumption is

diffi cult for many families:

It’s hard as a blind person to be taken seriously anywhere and in some ways

I feel it’s hardest when it’s in front of your children … Being a father has been

a big part of my identity; for a number of years it was more important for me

to look after them than to work full time. I worked part time. I wanted to look

after them half the time all those years and it was very important for me. It

was hard when that wasn’t received by other people. I felt it had another

layer of contempt because of my sight, because they didn’t quite believe that

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I was looking after them anyway. A common reaction was ‘oh I expect they

look after you don’t they?’ assuming that they’re your carer rather than I’m a

dad doing the caring (Kilkey & Clarke, 2010, p.142).

For many fathers in this study, the most diffi cult aspect was the felt stigma,

with some fathers choosing not to go out or participate in the world for fear of

the stigma they experienced.

One of the aspects of being a parent that many parents who experience

disability report as being most diffi cult is the perpetual question mark hanging

over their head regarding whether or not they are ‘fi t to be a parent’. While for

most people the general assumption is that adults who have children will be fi t

to parent (a presumption of competence), when a parent has an impairment—

especially an intellectual impairment—this is frequently brought into question.

Not necessarily because there are any actual factors of concern, but simply

because a person has an impairment and this brings with it a set of societal

assumptions or stereotypes. As illustrated in this contribution from a father

who has an intellectual disability, parents who experience disability are often

placed under much greater scrutiny than any other parents: ‘You should be able

to wash the pots, watch the kids, hoover-up, cut the grass in the garden and see

what the next door’s dog is doing all in about fi ve seconds. You’ve got to have

your radar on overdrive … You have to work harder with being a person with

[an intellectual impairment]’ (Kilkey & Clarke, 2010, p.142).

Australian researchers McConnell and Llewellyn (2002) have conducted

research into the removal of children from parents who experience disability,

particularly parents with intellectual impairments. While these researchers

argue that for some children—of parents with and without impairments—

removal is required, they report concerning realities regarding the excessive

and inappropriate removal of children from parents who experience disability

in Australia and internationally: ‘There is unnecessary, unwarranted and

all-too-frequent removal of children when their parents have an intellectual

disability … the grounds for such removal are not related to protection of the

child, but rather to misguided or prejudicial ideas about parents with intellectual

disability’ (McConnell & Llewellyn, 2002, p.297–298).

The role of stigma in this process is alarming. McConnell and Llewellyn

(2002) have found that:

› Parents face discrimination and thus both enacted and felt stigma;

› Stereotypical assumptions have little basis in truth;

› Extensive research has demonstrated that parenting programs can be effective where required;

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Kathy Cologon

› The current rates of removal are disproportionate and point to concerning stereotypical views within the legal and child protection fi eld, as well as

within the wider community.

Some of the work of these researchers has included researching the views of

judges and other lawyers. It has been found that many such legal professionals

have stereotypical or prejudiced views leading to the assumption that the

outcome of any such case will always be removal, thus forming the basis of

enacted stigma.

1. What are your assumptions about parents who experience disability? 2. What is the basis for these assumptions? 3. Reflecting on these family stories, what steps can you take to be inclusive of

parents who experience disability in terms of your attitudes, practices and the way that you set up the early years environment?

CRITICAL REFLECTION

QUESTIONS

Resisting stigma and disestablishing ableism While stigma is a common experience, families are not passive victims. Many

families actively fi ght against or resist stigmatisation, in individual moments

and in working towards broader social and systematic change. So can early years

professionals—and they often do. There are many such examples, in fact the

inclusion movement in itself could be viewed as resistance to stigmatisation.

One step towards resisting stigma and disestablishing ableism is to recognise

that ‘difference’ is an everyday part of life. In reality there is no such thing as

‘normal’ or ‘abnormal’ (see Chapter 3). This is a process of acceptance—of the

self and each other. As one mother in Goodley (2007, p.150) shared: ‘You see,

I can’t keep chasing the normal. I mean I’ve done so much to try and make my

son normal but I can’t keep that up … I need to accept him in the ways that he

is and just enjoy them and him’.

Some family members develop, over time, the capacity to respond to ableism

with the assumption that—however offensive the comments or behaviours—

the person making them (be they family, early years professionals or perfect

strangers) is not intending to be offensive. On this basis families sometimes seek

to educate rather than focus on hurt or anger (mothers in Green, 2003, p.1367):

I say something really positive and I do that right away … because I know

that some people … don’t know what to say.

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I felt like I was constantly educating people … but by being gentle … but frank and saying just the right thing … I broke down a lot of barriers.

… my heart was healed because I started laughing about it … I would fi nd funny ways to say something back … Like ‘no I didn’t know he would have Down syndrome but I knew he’d have this gorgeous head of blond hair’ and I’d laugh. We just started laughing at home about some of the questions that were asked us during the day.

Early years professionals too can resist ableism by recognising stigma,

breaking down stereotypes and seeking to engage with every person as a

person , not as a label or category (McConnell & Llewellyn, 2002). Families in

my research shared:

I was shocked when the local preschool teacher asked me when my son was

coming to preschool … I had no idea he was even permitted to attend the

local preschool. I couldn’t believe I hadn’t realised he could attend a local

preschool and it opened my eyes to the future in such a positive way. It was

exactly what [son] needed as he was so sociable and just needed to be with

others … Beautiful for the whole family to watch him grow. (Family #83)

It has been wonderful to have her in educational situations where the

organisation hasn’t just taken her, but have actively wanted her and rejoiced

with us in every little step of progress. Our daughter has had aides and

teachers who meet us at the end of each day, excited about our daughter’s

day and what she achieved. (Family #89)

With resistance to ableism and stigma comes the reclaiming of the person

as whole and not-broken—thus the recognition that disability is a socially

constructed imposition, rather than a problem within a person that needs to

be ‘fi xed’ (see Chapter 2). As disability rights activist Judy Heumann writes:

‘Disability only becomes a tragedy for me when society fails to provide the

things we need to lead our lives—job opportunities or barrier-free buildings, for

example’ (cited in Shapiro, 1993, p.20).

CASE STUDY 5.3

Siblings challenging stereotypes One of the key processes for resisting stigma or disestablishing ableism is recognising and challenging stereotypes and prejudices in order to eliminate, or at least reduce, their negative effects. One common stereotype regarding siblings is that if an older sibling experiences disability then the younger sibling who does not experience disability will assume the role of older sibling.

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However, one perspective that is very neglected in the research literature is the perspective of siblings who experience disability themselves. Australian researchers Serdity and Burgman (2012) conducted a study exploring the perspectives of older siblings who experience disability. This research involved 10 older siblings aged between eight and 11 years (five girls and five boys).

While one older sibling appeared to fill the younger sibling role, this was not the case for any of the other participants. A key theme emerging from this study was that older siblings who experience disability do fulfil the older sibling role, including taking on the role of protector, teacher, carer and sometimes a parent-type role.

Protecting his little brother from bullies, ‘Rambo’ (child-chosen pseudonyms) shared, ‘… they used to bash him so he bashed them back … They call him fatty … So I bash ‘em’ (Serdity & Burgman, 2012, p.41). ‘Groovy Princess’ shared ‘sometimes Mum gets me to just watch [youngest brother] … while Mum goes down to the shops’ (Serdity & Burgman, 2012, p.41). On taking on the role of parent/teacher, ‘Rambo’ said: ‘I’ve told her [younger sister] she shouldn’t be drawing on herself’ (Serdity & Burgman, 2012, p.40).

The older siblings also reported rivalry with their younger siblings, consistent with common expectations of sibling relationships—regardless of disability: ‘… she normally starts chasing me and when she starts chasing I walk into there, get a pillow and just go whack’ (Ian Welsh in Serdity & Burgman, 2012, p.41). ‘I beat my sister in drawing, like she does a body, a stick. She does like a whole body and a face altogether in one’ (Ian Welsh in Serdity & Burgman, 2012, p.42).

In contrast with most research that reports that siblings who do not experience disability often feel they get less of their parents’ time, some participants in this study felt that their younger siblings (who do not experience disability) actually get more of their parents’ time and attention. Gender and personality also influenced sibling relationships.

There were only two children in this study for whom impairment appeared to impact on their perceptions or experiences of the sibling role. While this was clearly difficult for one child, this was not an example of the dependency type stereotype commonly assumed: ‘Well, I’ve been wanting to play football, and [older brother] was supposed to play football, and then [younger brother] started playing this year … that’s when I really, really wanted to play, and dad told me I just couldn’t’ (Brett in Serdity & Burgman, 2012, p.45). Overall, this research suggests that siblings who experience disability can and do fulfil the older-sibling role and have well- developed sibling relationships.

1. Before reading about the perspectives of the siblings in this study, what were your notions regarding older siblings who experience disability? What do you think these beliefs are based on?

2. Consider your broader views about siblings and disability. In what ways do you need to challenge ableist views and unexamined stereotypes?

CRITICAL REFLECTION

QUESTIONS

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Facilitators of inclusion The families participating in my research recognise many facilitators of

inclusion and have many hopes for the future. Positive attitudes towards

inclusion on the part of families and early years professionals were identifi ed

as a key facilitator of inclusion. This includes valuing the child for who they

are, genuinely understanding inclusion and being committed to inclusion and

embracing diversity:

Greater awareness of the value of all people and greater understanding of

inclusion and disability. Social change to move away from a tragedy view

of disability towards an embracing of human diversity. Equal opportunities.

(Family #121)

Inclusive relationships were identifi ed as another key facilitator of inclusion.

Families reported that this involves educators building relationships with the

child, being open-minded, fl exible and creative, seeing the child (not the label)

and being willing to get to know and learn how to address the needs of the child:

For all, to see him as an individual with as much to offer as the next person.

That his life can be a good life like everyone else’s. Opportunity to be loved,

give love, feel happiness and respect. (Family #83)

Families reported that inclusion also requires respect and collaboration

between the family and setting and collaborative partnerships with a range

of professionals. Families argued that inclusion from an early age facilitates

FIGURE 5.3 LITTLE BROTHER’S FIRST DAY OF SCHOOL

Photo: Alison Wilson

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ongoing inclusion. Families shared that supportive community networks and

promoting inclusion within the wider community are important for belonging,

and thus for inclusion:

To be included in all aspects of society from the very beginning as is his

natural right of passage. (Family #72)

Acceptance of the wider community. Reversal of current political policy that

sees the disabled and needy as a burden to society. (Family #74)

Addressing systemic barriers and providing education for early years

professionals to ensure understanding of inclusion and confi dence in taking

fl exible approaches, were identifi ed as key facilitators of inclusion. Families

also experienced greater inclusion when educators enjoyed their role:

Educating the teachers is most important because that will fi lter through to

children and then to future generations. Laws against schools to exclude

children from a program because they do not think he/she is able to achieve

it. (Family #118)

Abolition of support units for children with disabilities and education in a

mainstream setting with an aide alongside their peers. Achievement would

be much higher and prospects would also be greater. (Family #9)

Families emphasised the importance of a strengths (not defi cit) based

approach with high expectations (presuming competence). Recognising the

contribution the child makes to the setting and community was viewed as

critical to facilitating inclusion:

We need to keep focused on her abilities and helping others who know

her to see her strengths. She needs to believe in herself and have lots of

practice making choices and being successful, like everyone does. She needs

the wider support from the community to allow her opportunities (and not

assume she can’t or shouldn’t do ordinary things) and she needs the fi nancial

support to make any adaptions needed. (Family #55)

Important practices were identifi ed, including:

› Putting inclusive values into action;

› Thoughtful and refl ective inclusive planning;

› Support to make education goals achievable;

› Support for transitions.

Advocacy on the part of families and early years professionals was also

identifi ed as a key facilitator of inclusion. Families reported that this requires

determination and perseverance, knowledge of rights and anti-discrimination

laws, families and early years professionals modelling inclusion, and ongoing

leadership.

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1 1 2 S E C T I O N 2 : D I V E R S I T Y A N D I N C LU S I O N I N T H E E A R LY Y E A R S

FIGURE 5.4 THE WISHING WELL

Conclusion I want my son to be a happy, contributing member of society who is

understood, respected and accepted by the people he comes into contact

with. I want him to know that we are a family, just as other children and

parents are families, and that his differences do not limit him. (Family #95)

There is much to learn from the experiences of families and the understanding

of inclusion that families build through these experiences. There are many ups

and downs and often an ongoing mixture of pain and joy. In all of this the

overwhelming message from families is one of love and joy in experiencing life

together. A key message that emerges for early years professionals is the need

to challenge stereotypes and to recognise all people as people—whether or not

they experience disability.

Early years professionals have an important role to play in reducing the

diffi cult experiences of stigma and ableism that families face. By addressing

barriers to inclusion and by welcoming children and families and fostering

belonging, we can work together towards inclusion for all.

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1 1 3C H A P T E R 5 : ‘ N O T J U S T B E I N G A C C E P T E D , B U T E M B R A C E D ’

Kathy Cologon

FOR FURTHER REFLECTION 1. What have you learnt from the family

experiences shared in this chapter?

2. Why is it important to consider your views, assumptions and preconceptions about families and the experience of disability?

3. Reflect on your past and present views and practices. What steps can you take to be more inclusive of the diversity of families in the early years?

WEBSITES http://www.family-advocacy.com

Family Advocacy (NSW) is an independent advocacy organisation.

www.resourcingfamilies.org.au Resourcing Families provides information and resources for families, friends and allies of people with disability.

www.cda.org.au Children with Disability Australia

www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/national-disability- advocacy-program/models-of-disability-advocacy/national-disability-advocacy-agencies-funded-by-the-australian- government-by-state-or-territory

National Government-funded Disability Advocacy Agencies

Biklen, D. & Burke, J. (2006). Presuming competence. Equity & Excellence in Education, 39 (2), 166–175. doi:10.1080/10665680500540376

Bridle, L. (2005). Why does it have to be so hard! A mother’s reflection on the journey of ‘inclusive education’. In C. Newell, and T. Parmenter, Disability in education: Context, curriculum and culture (pp.1–12). Canberra: Australian College of Educators.

Bridle, L. & Mann, G. (June, 2000). Mixed feelings: A parental perspective on early intervention. Presented at the National Conference of Early Childhood Intervention Australia, Brisbane. Retrieved from www. downsyndromensw.org.au/data/Mixed_Feelings_by_ Bridle__Mann.pdf

Department of Education, Employment and Workplace Relations (DEEWR). (2009). Belonging, being and becoming: The early years learning framework for Australia . ACT: DEEWR. Retrieved from www.coag.gov.au/sites/default/ files/early_years_learning_framework.pdf

Derbyshire, L. (2013). A mug or a teacup and saucer? In T. Curran and K. Runswick-Cole, Disabled children’s childhood studies: Critical approaches in a global context (pp.30–36). New York and London: Palgrave Macmillan.

Dockett, S. & Perry, B. (2005). ‘You need to know how to play safe’: Children’s experiences of starting school. Contemporary Issues in Early Childhood, 6 (1), 4–18. doi:10.2304/ciec.2005.6.1.7

Ferguson, P.M. (2002). A place in the family: An historical interpretation of research on parental reactions to having a child with a disability. Journal of Special Education, 36 (3), 124–130. Retrieved from http://sed.sagepub.com

Goodley, D. (2007). Becoming rhizomatic parents: Deleuze, Guattari and disabled babies. Disability & Society, 22 (2), 145–160. doi:10.1080/09687590601141576

Green, S.E. (2003). What do you mean ‘what’s wrong with her?’: Stigma in the lives of families of children with disabilities. Social Science & Medicine, 37 , 1361–1374. doi:10.1016/ S0277-9536(02)00511-7

Green, S.E. (2007). ‘We’re tired not sad’: Benefits and burdens of mothering a child with a disability. Social Science & Medicine, 64 , 150–163. doi:10.1016/j.socscimed.2006.08.025

Haraldsdóttir, F. (2013). Simply children. In T. Curran and K. Runswick-Cole (Eds), Disabled children’s childhood studies: Critical approaches in a global context (pp.13–21). New York and London: Palgrave Macmillan.

REFERENCES

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Jones, L. (2002). Derrida goes to nursery school: Deconstructing young children’s stories. Contemporary Issues in Early Childhood, 3 (1), 139–146. Retrieved from doi:10.2304/ciec.2002.3.1.4

Kilkey, M. & Clarke, H. (2010). Disabled men and fathering: Opportunities and constraints. Community, Work & Family, 13 (2), 127–146. doi:10.1080/13668800902923738

Lilley, R. (2013). It’s an absolute nightmare: Maternal experiences of enrolling children diagnosed with autism in primary school in Sydney, Australia. Disability and Society 28 (4), 514–526. doi:10.1080/09687599.2012.717882

McConnell, D. & Llewellyn, G. (2002). Stereotypes, parents with intellectual disability and child protection. Journal of Social Welfare and Family Law, 24 (3), 297–317. doi:10.1080/09649060210161294

Nutbrown, C. & Clough, P. (2009). Citizenship and inclusion in the early years: Understanding and responding to children’s perspectives on ‘belonging’. International Journal of Early Years Education, 17 (3), 191–206. doi:10.1080/09669760903424523

Robinson, S., Hickson, F. & Strike, R. (2001). Interactions with school personnel. In More than getting through the gate: The involvement of parents who have a disability in their

children’s school education in NSW (pp.24–37). Sydney: Disability Council of NSW.

Russell, G. & Norwich, B. (2012). Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology and Psychiatry, 17 (2), 229–245. doi:10.1177/1359104510365203

Serdity, C. & Burgman, I. (2012). Being the older sibling: Self-perceptions of children with disabilities. Children & Society, 26 , 37–50. doi:10.1111/j.1099-0860.2010.00320.x

Shapiro, J.P. (1993). No pity: People with disabilities forging a new civil rights movement . New York: Three Rivers Press.

Skitteral, J. (2013). Transitions? An invitation to think outside y/our problem box, get fire in your belly and put pebbles in the pond. In T. Curran and K. Runswick-Cole (Eds), Disabled children’s childhood studies: Critical approaches in a global context (pp.22–29). New York and London: Palgrave Macmillan.

Tyrie, B. (2013). My sister Stevie. In T. Curran and K. Runswick- Cole (Eds.), Disabled children’s childhood studies: Critical approaches in a global context (pp.10–12). New York and London: Palgrave Macmillan.

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