search

• News
• Publications and reports
• Participation kit
• Training, seminars, events
• Speeches
• Links
• Book meeting rooms

Introduction

I’d like to acknowledge the Gadigal people of the Eora nation, the traditional owners of the land we’re meeting on.

I would also like to acknowledge and commend ACROD NSW for establishing its Subcommittee on Children, Young People and their Families and for hosting today’s forum. 

I was delighted to be asked to talk today about what will be influencing children and childhood in the twenty first century: what confronts us, as a society, to become more just and more inclusive of children in general and of children with disabilities in particular.

Over the next half hour I will attempt to do two things.

I will outline to you what we know about how children and young people with disabilities experience their lives and some of the other messages from the international research about their lived experiences.

I will then look at the trends in our society, how they may impact on kids, whether they may impact differently on kids with disabilities, and make some suggestions on how collectively we might approach addressing them.

Children’s Experience of Disability

So, what’s it like to be a child or young person with a disability?

I think it is really telling that so little research has been done to find out from kids with disabilities themselves what they think about their lives and how they experience the world.

To quote John Davis and Nick Watson :

“Most research with disabled children has been preoccupied with differentiating children on the basis of their impairments, measuring children’s bodies and minds against physical and cognitive norms…This research has, in the main, been dominated by ideas of dependence and exclusion”

As recently as 1994, which is only twelve years ago, the British government searched the international literature for information about kids’ experience of disability.

They were unable to find it, concluding:

“We lack children’s accounts of pain, discomfort, dependence on others for feeding, bathing and toileting. We do not know how they feel about the way doctors, social workers, therapists and other children treat them” 

It seems that decisions were being made by governments, service providers and sometimes families without an understanding of the lived experiences of children and young people with disabilities.

Information to shape policy and practice was being provided by service providers and sometimes by families, but not by the kids themselves.   

Fortunately things are a little better now, thanks largely to the work done in Britain by Ann Lewis, Tom Shakespeare and their colleagues.

If you are unfamiliar with it, I recommend you read about the “Life as a Disabled Child” project run jointly by the UK Economic and Social Research Council and the University of Leeds.

The project worked for several years with children with a wide range of disabilities of varying severity and found out about what the kids liked and disliked about their lives.

What those British kids said resonates strongly with me, as it is similar to what NSW kids with disabilities have said when we have consulted them on various issues.

I’ll give you a brief summary of what the British project found about the views and experiences of children and young people with disabilities, using the project’s language of “disabled child” and “impairment” and quotes from some of the children involved.

Understanding of Disability

The kids with disabilities involved in this project were not passive victims or powerless; many were happy and successful children and young people.

Some of the kids regarded everyone as disabled in some way and didn’t see why there was such a fuss about them.

They saw themselves, and were determined to be seen as, normal, and more like other children than different from them.

Disabled children, even those with the most severe impairments, were able to communicate their feelings about their lives and the treatment they receive.

The researchers found that sometimes, the adults who know the children best are not good at recognising their ability to make choices; however, whatever the impairment, they found that children with disabilities can be agents and they can resist what they don’t like.

Social construct of disability

Many of the problems reported by disabled children are the result of social barriers to their participation in society.

They are disabled by discrimination and prejudice, not by their bodies.

In particular, the children in the project resisted adult notions of dependency and adult attempts to control their lives; they felt more capable and independent than they were given credit for.

When asked if adults always did things for her, one child said: “they’re always doing it. It’s really annoying. But I try to get my own back by doing things they don’t like.”

Bullying was a central theme when the disabled children talked about their lives, almost all experiencing verbal or physical abuse: “we all get picked on.”

And, as in any other category of kids, some kids with disabilities were themselves bullies.

Individuality

There was a wide variation between disabled children, including between children with the same impairment.

Apart from being bullied, the only thing the kids had in common was disability - and for many of them, disability wasn’t the most important part of their lives.

They are individuals; they did not want to be treated as a single group.

Kids reported that some adults don’t see their individuality, but have pre-conceived ideas arising from their impairment, resulting in their being labelled and categorised as “different”.

Kids also report that they don’t like being treated that way: “you should go beyond the disability and just look at the person inside”

Though some have adapted to this attitude, and attempt to use it to their advantage: “Sir, sir, can we go to lunch early, ‘cos we’re disabled?”

However, many of the kids in the project thought that “disability” had been imposed as the dominant framework in their lives, though this was not what they wanted.

A great many things that they did or that happened to them were explained – by others – as a result of their disability.

Some found it strange that if they got sick it was because of their disability; if a non-disabled friend got the same illness, it was because some bug was going around.

Similarly, if they misbehaved in class, it was because of their disability; if a non-disabled friend misbehaved, it was because they were just being naughty.

Surveillance

Children with disabilities spent much more time in the company of adults than other children – teachers’ aides, bus and taxi drivers, therapists, respite carers and so on were often with them.

Some were conscious of being under adult surveillance and felt the lack of privacy. One boy said:
“you may find it hard to believe, but even I have things I would like to keep secret”

One girl preferred not to have an adult support person in her classroom: “…because it’s more interesting. You can talk to your mates”

In fact, adult service systems seem at times to isolate and separate kids with disabilities from other kids.

We don’t know what effect the dominant presence of adults and reduced presence of children has on the lives of kids with disabilities, but it may well affect their social and emotional development.

Life Experiences

That’s a brief summary of the findings of what I understand to be the most extensive study of what it feels like to be a child with a disability.

At the Commission, we sometimes find that adults conflate kids’ life experiences with their aspirations and needs.

In our experience, which reinforces the messages of the Life as a Disabled Child project, the aspirations and needs of children with disabilities are not very different from those of other kids, even though the lives they lead may be.
 
Regardless of their personal situation, sensory, physical or intellectual ability, culture, gender or religion, the children and young people we speak with want largely the same things.

In recent years, as part of our broader consultation processes, the Commission has spoken with kids with disabilities about, among other issues, health, education, the built environment and how to make Australia a better place for kids.

It has been rare that the issues and priorities raised by kids with disabilities have been different from those of the other kids we spoke with. Here are some examples.

We asked a group of 13 to 15 year olds with intellectual disabilities what they would change for kids if they ran Australia. Here’s what they said, together with some quotes from the non-disabled kids we spoke with:

• Free places to go…like water sliding for free
• I would like a waterslide
• More parks
• A better park – it would have big slides
• You know, like ... police hanging around and like security for schools 
• More security guards …increase police 
• Nicer bus drivers. There’s some around but most of them are mean
• Some adults boss you around – I heard adults say mean stuff to kids

The comments in italics were said by kids with disabilities, those underlined by other kids.

We spoke with some slightly older young people with cerebral palsy about school. Here’s what they said, again compared with some non-disabled kids the same age:

• I hate it when they give me heaps of sheets [for homework]. I want them to talk about it.
• He wouldn’t explain to you how to do the work. He wouldn’t talk to the class.
• It doesn’t need to be fun all the time. Not fun, just worthwhile. Like if it’s boring and repetitive and just sitting in a room or doing sums and dictation, you don’t learn it.
• I reckon a good teacher is willing to actually try to make it fun to learn than just plain old boring copy off the board
• They [good teachers] don’t treat you as inferiors.
• Teachers should know how to talk to you, to communicate with you and get along with you just like friends

Once again, the format distinguishes the words of the kids with disabilities; the content doesn’t. This time it’s underlining for those with disabilities and italics for the others.

Some younger children with a range of disabilities played a thumbs up/thumbs down game with us about buildings and public spaces in their part of Western Sydney.

A park with trees, a duck pond and a picnic area got the biggest thumbs up from these children, who also liked the local train station and the local shops, if you could go in the car with Mum.

Big buildings got the thumbs down, especially the one that looked like a hospital.

In all cases, the comments and suggestions from their non-disabled counterparts were almost identical.

As part of NSW Youth Week this year, an online young people’s disability forum was held to find out more about the lives of NSW young people with disabilities.

Again, it is very clear that these kids want to have the same sort of lives as other kids – school, work, relationships, fun:

• “I feel I am a part of the community except when people put up signs and I can’t read them because I am blind”
• “I just want to be like every other of my teenage friends”
• “people think you have 2 heads the minute they hear disability. Maybe we should call ourselves exceptional people as it is amazing what abilities we have that make us great workers.”
• “I was told at school I didn’t have the ability to be a goal keeper in the soccer team, I went in goals anyway and saved many goals.”
• “people tend to see the wheelchair before they see me”

In summary then, children and young people with disabilities are telling us that they are individuals, they want to have lives like anyone else’s now and as they grow up, they do not want to focus on their impairments and that other people’s attitudes are the main barrier to them living the lives they want.

In particular, I think it’s important that we don’t talk about kids with disabilities as having “special needs”.

They have the same needs as other kids.

The way those needs can best be met will different in many cases – but the needs are the same; they’re children.

Social Change

It is this understanding of the lives of children with disabilities that will inform my thinking about how the world is changing, and how those changes may impact on kids in general and those with disabilities in particular.

It is difficult to know what forces will shape the next few decades, what our society will be like then and how these changes will impact on children and young people.

Children will be affected by the broad issues that will affect us all.

But children’s experience of these major changes may be quite different to adults. The impact on them may be different if only because they will live longer, so they will experience these changes from a younger age and for a longer time.  There also may be issues that are specific to children.

So I’d like to discuss four things that I believe will be important for children as we move into the twenty-first century:

• demographic change
• globalisation
• new media
• social inequality

Some will have a greater impact on children with disabilities than others.

Of course, I’ll merely be giving a broad overview, but I hope it will stimulate an interesting and worthwhile conversation.

When I think these forces might impact differently on kids with disabilities than on other kids, I’ll point this out.

Demographic change

Over the last hundred years, Australian birth rates have dropped from 3.4 to 1.8 children per woman – reflecting a trend evident across most economically developed nations.  At the same time, people are living longer, and it is likely that people will continue to live longer and healthier lives.

This is particularly the case for children with disabilities, many of whom can now expect to die of old age, even though in the past people with the same conditions had reduced life expectancies.

Since 1960 the proportion of the population under 15 years has dropped from 30% to 20%.

Not only has the proportion of children in the population decreased, in the last few years the actual number of children has started to drop as well.

Our society needs to prepare itself for an ageing population, and for a time when we will have a smaller tax base to support that ageing population.

With fewer children in society, children may just be tolerated and possibly ignored by society – and for children with disabilities that is not an encouraging thought.

Children and families may well get a smaller share of social spending; what is spent may be targeted on investing in children’s skills as members of a future labour force rather than providing services that promote quality childhood for its own sake.

The focus may shift from enriching children’s lives to strictly equipping children with what they need to be productive adults.

Seeing children primarily as investments has profound implications.

On the positive side, it may mean that resources are pumped into good quality education and health care for children.

It could be an important opportunity for kids with disabilities. A society which has grossly underestimated the ability of people with disabilities to contribute to the economy through employment may have to realise that they are wasting an important potential labour force, and start training and supporting kids with disabilities to move into employment in great numbers.

But if the aim is to create the smartest and most adaptable workforce possible, then there may be little interest in children’s quality of life.

In the future, larger numbers of adults will have no financial responsibility for children, and less contact to children; a larger proportion of the voting public will have nothing at stake in promoting children’s interests.

If children make up a smaller proportion of the population and there are less adults who have a stake in promoting children’s interests, children as a group will have less political power. Children’s ability, and their advocates’ abilities, to make claims on social resources will be reduced; children with disabilities perhaps even more so.

On the other hand, the decreasing number of children may refocus our attention on the importance of children. The decreasing number of children may mean a revaluing of childhood as children become more rare and precious.

Globalisation

The next major trend changing our world is globalisation.

We live in a country exposed to the global flow of people, information and products. Children are now exposed to different cultural practices both within our own country and those countries around us.

As children and parents are increasingly confronted with a plurality of values, long-held assumptions about families, socialisation of children, cultural practices and attitudes will be questioned more than ever before.

So perhaps will our society’s construction of disability.

Traditional institutions such as the family and school may have less control over the influences that affect children.

Already there is a trend for close relationships between adults and children being contracted out to the market so parents can in turn participate in the labour market themselves.

For example: the care of children, and especially children with disabilities, has increasingly become a commercial activity, rather than something we see as a family and neighbourhood responsibility.

Children’s time, for adults, can be more about purchasing services to occupy and supervise them, than about family life. 

Adults who provide services to children generally do a great job for little recognition, but the relationship underpinning this is one of adults providing a commercial service to other adults.

It is not a free exchange of time, effort, love and attention that forms part of the deep web of attachments that occur within families.

For kids with disabilities this is important. As family size decreases, they will have fewer brothers and sisters, and an increasing number will be only children. They will have even fewer opportunities to develop these intimate family attachments.

As we have seen, children with disabilities already have less exposure to other children, so fewer relationships and less contact with siblings is further reason for increasing their social contact with other kids.

So opportunities children have for developing intimacy and attachments may be changing as the global market asserts itself.

New Media Types

Global communication has meant children can access more information, locally and globally.  Advances in media technology are one of the most obvious changes occurring around us.

For kids with disabilities, the new technologies, when they’re affordable, have been of enormous benefit and will probably be of even more value in the future. Technology has made communication and social interactions easier for many kids with disabilities.

In an online chat room it is possible to live a life like everyone else, even if you’re in a wheelchair, or use voice-activated software or a Braille keyboard.

You can feel much safer in the community and more confident travelling if you have a mobile phone in your pocket, even if it took you longer than other people to learn how to use it.

Some of the barriers society has erected for kids with disabilities may be lowered or removed as technology overcomes some limitations in communication, mobility and sensory systems.

With these technologies children, and particularly children with disabilities, are able to independently obtain information, and perhaps act more independently, from home, school and community, than previous generations.

Everyday life will increasingly require use of these technologies, so developing these competencies becomes crucial for children.

If adults don’t engage with these new technologies they may find themselves dependent on their children. The twenty-first century may see a new inequality open up between generations and within generations; inequality between those who are technologically able and those who are not – and those of you in this audience will know that some kids with disabilities are technologically very able indeed.

Socioeconomic Inequality

Australia has high levels of inequality compared to other developed economies.

We have the fifth worst level of income inequality amongst developed democracies and the inequality has worsened over the last thirty years. We rank ninth worst in child poverty amongst rich nations.

The trends over the last 30 years may mean this inequality will deepen for the foreseeable future. 

The welfare state traditionally buffered families from the impacts of economic downturns. This was done for the sake of stability and equity for the population.

Stable work, security of income and guaranteed essential services help parents to care for their children; they provide certainty and security, ingredients that are essential to good parenting.

However governments have withdrawn from some of these responsibilities. Governments are increasingly relying on the private provision of services, for example health care, education and telecommunications.

Joblessness and economic worries are often accompanied by disrupted relationships, poorer health, financial difficulties and stress.

If these trends continue, we may see a widening divide between children whose needs can be secured by their family and those who have no guarantees.

We know that increased inequalities lead to more pronounced complex problems among poorer children.  Examples include increased rates of mental health problems, asthma, obesity, juvenile diabetes and developmental disabilities.

The higher your socio-economic status, the lower the likelihood that you will experience these problems.  The burden of these problems is unevenly shared in our society.

Raising and supporting a child with a disability in Australia can be expensive for families, and parents of kids with a disability may have less opportunity to participate in paid work than parents of other children. For these reasons, families of children with disabilities are probably worse off economically on average than other families. They, and their children, are therefore more likely to suffer from the effects of these growing socioeconomic inequalities.

Conclusion

That then is my summary of the world I think children will be living in over the next decade or two, with some indication of how children with disabilities might have more opportunities and more challenges in living the lives they want to live in that world.

In concluding I just want to reflect on how we might want to position ourselves in response to this emerging world.

With fewer adults to advocate on behalf of children, I believe the efforts of organisations such as the Commission and ACROD and its members will become even more important as we move into the future.

I don’t think I’m being unfair in suggesting that, in the past, the disability movement to an extent has been focussed on adults and that the children’s movement to an extent has marginalised kids with disabilities.

Valuable expertise in both sectors has not been shared.

We need to create a present where there is a collaborative focus on supporting children and young people with disabilities as individuals, to live the lives they want now and to develop so they can live the lives they want later.

Research about childhood, about disability in general and about particular disabilities is happening all over the world. Our understanding of what promotes quality childhood and positive development is greater now than ever.

There is a willingness to promote what works for children.

We can choose to make childhood in the twenty-first century something that is inherently beneficial and enjoyable, respects each child’s individuality and meets the needs they all have, in the differing ways those needs can be met.

We need to think about childhood as a time of being, not just of becoming¸ a time that is valuable in itself and not just a preparation for adulthood or economic production.

We need to think of children as people with rights, abilities, opinions and an important contribution to make to society, not as incompetent adults whose only needs are to be protected and taught. 

We should recognise that responsibility for children is not just about parent’s obligations, but society’s obligations.

A family by itself cannot raise its children – it needs us all.

I’d like to live in a society that has at its heart a general commitment to provide children with a decent standard of living and be sensitive to children’s diversity and individuality.

It must acknowledge that adults need to listen to children and to share space, experience, knowledge, opportunities and resources with them – both as our future and as children in the present.

Thank you.

< back