The importance of social inclusion

The importance of social inclusion

Christine BigbyChristine Bigby
Email: c.bigby@latrobe.edu.au

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James Ayers:

Welcome to a La Trobe University podcast. Today we're with Professor Chris Bigby from the School of Social Work and Social Policy. Today we'll be discussing the issue of social inclusion for people with intellectual disabilities. Chris, can you just briefly explain to us what intellectual disability is?

Christine Bigby:

Intellectual disability is comprised of two parts. People have an intellectual impairment, which means they have below-average intellectual capacity. They have difficulty thinking abstract thoughts or thinking things into the future dealing with concepts like time. And they also have difficulty with adaptive behaviour, managing the everyday things of life without support.

But the disadvantage that people with intellectual impairment experience is the interaction between that impairment and the social structures and processes of society. That impacts on them and causes further disadvantage.

James Ayers:

Can you explain to us, then, the definition of 'social inclusion', which I know is quite a complicated one and varied?

Christine Bigby:

Social inclusion is a very messy sort of concept and it's been criticized for having no clear definition. People use it in lots of different ways and they tend to use it as a very rhetorical sort of device. It's a sort of warm, fuzzy concept a bit like communities. Everybody wants to be in a community or socially included.

But the Social Inclusion Board of Australia has just developed some really nice sort of domains around social inclusion and it's suggesting that there's four key domains around being included in work, being included in education and personal development, having social connections, having family and friends and people in the community that you know and that you can get support from, and having a say about your own life and what goes on in the community and bigger sort of political decisions.

James Ayers:

And what are some of the obstacles towards this social inclusion?

Christine Bigby:

For people with intellectual disabilities, I would say one of the chief obstacles is everybody else's attitudes is the social structures in which we live, people who don't expect very much from people with intellectual disabilities. And because they can't compete with everybody else, they can't reach the same standards of high achievement and high status which we accord to people. And so they are seen as unimportant members of society. And they also need a lot of support in order to make friends and relationships and to participate, and we don't provide very good support for people to do those sorts of inclusive things.

James Ayers:

And I was reading in your research the idea of merit and achievement as the right avatars of access to position, which then relegates people with an intellectual disability to the bottom of that merit ladder is there an issue with the fact that society tolerates people with intellectual disability rather than accepts them?

Christine Bigby:

I'm not actually sure that it tolerates them either. We see them as very much still the deserving poor that we provide support to survive, but not really to flourish and improve their quality of life.

Things have changed quite dramatically over the last 50 years and we now have this rights discourse that says people have the right to participate and the right to do things. But we don't provide them with sufficient support to enable them to do that and we don't adapt the way we operate in order to include people. So things like jobs have become much more complicated. You don't get conductors on trams anymore, you don't have bank tellers that you can go and talk to. Everything has become automated, and that makes life much more difficult for people with intellectual disabilities.

James Ayers:

Do these issues stem back to policy?

Christine Bigby:

We have actually very good policy. But we have very poor implementation and very poor programs and structures that then support putting the policy into action and that resource the policy to actually make it happen.

One of the other things that's happened over the last 10 or so years in Australia which hasn't happened elsewhere is that the focus has become all people with a disability, whereas in the past and in the U.K., for instance, there's still a focus just on people with intellectual disabilities. So it means in Australia, a lot of the strategies that we've put in place have become very generic. We've built lots of really nice super tram stops and we've addressed lots of the physical access things, but we haven't addressed lots of the cognitive accessibility that specifically affect people with intellectual disabilities and are much more sort of invisible.

James Ayers:

Do you think it's a case of, say, the public stigma around intellectual disability in changing, or is the policy going to affect that? Is it the chicken or the egg, so to speak?

Christine Bigby:

There's a lot of us that have the view that the policy has moved ahead of public opinion. We did some research over the last few years. We've been looking at what happens to people who live in small group homes, and one of the things we've found is that the staff who work in those homes actually don't think it's feasible for people with more severe intellectual disabilities to be socially included.

They don't think it's feasible for them to have friends or relationships with people who aren't family members or who aren't other people with intellectual disabilities. So if the staff don't think it's feasible, then it's a big ask for the rest of the community who don't come in contact very often with people with intellectual disabilities.

James Ayers:

And moving into that community, what sort of help is there for people with an intellectual disability?

Christine Bigby:

There's a significant number of specialist support services that will provide activities for people to do during the day. There's supported employment services that people can attend where people are congregated together, unfortunately, with other people with intellectual disabilities. There's accommodation support for people in and out of home, in group homes. And increasingly there's more individualized funding packages available for people to provide support to do everyday things.

But there's a huge unmet need for all of those sorts of support services. So what happens is the system runs on a crisis. You have to have a very high level of urgent need in order to get into the system and to get your needs met. And you may well only get some of your needs met, so it tends to meet basic needs rather than improving your quality of life and your social inclusion. Our services just don't have the resources to do that sort of work with people.

Christine Bigby:

Have those services improved, say, over the last 30 years? Are we heading in the right direction?

Christine Bigby:

Yeah, we're certainly heading in the right direction. I mean, we have closed most of the institutions in Victoria over the last 30 years. And in Australia, we are moving towards closing most of the institutions. So we've stopped having very segregated, very congregated programs that put people on the edge of society, completely away.

So what we've done now is we've now got people being very present in the community. So people are supported to stay in their own homes with their families or to live in small group homes. So they're present, but we often say they're not participating because they don't have those connections into the community. So it's much better than it was.

James Ayers:

What are the services like when you move out of urban areas and into rural areas? Are the services still as good or are they lacking or is there more of an area of need regionally than there is in the city?

Christine Bigby:

It's interesting because a lot of the institutions in the past were built in the rural areas, places like Beechworth, Sandhurst, Aradow, Ararat. So there are large numbers of people with intellectual disabilities who have moved out of institutions who still live in some of those rural areas.

And the services are actually fairly good in rural areas, particularly in the rural towns like Geelong and Bendigo. We've been doing some research with an organization in Bendigo that has a really excellent service for people with very high support needs and who have challenging behaviour. And there's often a sense that the rural areas do better. There's a myth — we don't have the evidence to prove it — that maybe rural areas are more inclusive and are more tolerant of people that are different. And because they are smaller communities, people are more likely to know each other and to be accepted.

We have still to prove that. That's a sort of a sense that that might be the case.

James Ayers:

And moving on to the individual. What are the benefits that people with an intellectual disability take out of becoming included by the community?

Christine Bigby:

They take out a much higher quality of life. They take out the same things that the rest of us do that if they are acknowledged as an individual and they have social relationships, then their self-esteem increases, their level of skills will increase, their enjoyment of life will increase.

I mean, everybody flourishes when they are surrounded and known by other people, when they are in relationships and they have a strong sense of themselves. You just have to compare the quality of life of people now compared to what it was in the institutions.

For example, some work we did last year, we looked at three people who had spent most of their life in an institution. And they had been abused, they had been subject to significant injury inflicted by themselves and inflicted by staff and inflicted by other people that they were living with. They didn't have any contact with the community at all and they couldn't develop their skills.

Those three people now live in individual settings in the community and they experience no injury at all. So they're safe. Their health is much better. They are able to participate in a range of things. And they live a much, much better quality of life because they're not in fear of their life in many ways.

James Ayers:

Are there institutions still open?

Christine Bigby:

Yeah. There's still an institution in Victoria called Colanda. In New South Wales, they are actually rebuilding institutions. So there's still a significant debate about the policy of closure of institutions. And there's a sense that you can't have social inclusion while people are still living in institutions. It's a contradiction because it puts a message out that these people are different, they are separate from the rest of the community, and they only need to talk to each other and staff and family, so they're not part of everything else.

James Ayers:

What sort of processes do we need to go through to break down that barrier?

Christine Bigby:

We don't really know that. I mean, the supposition is that it's about education, it's about beginning to integrate children right from an early age into school so that people grow up with being exposed to people that are different and accepting them. There's a set of theories around contact, that the more that you have contact with other people, then the more chances there are of making relationships. There’s theories around discrimination and prejudice, that if you're exposed to people and you get to know them as individuals, then that breaks down those negative sorts of attitudes.

I've got a Ph.D. student at the moment who's actually exploring that and looking really in detail when somebody's introduced to a community group, how do those relationships grow and what are the sorts of things that need to happen to develop those individual sorts of relationships. And our proposition is that people not only need to be exposed and have contact, but they need to be in situations where there's a sense of equality, where there's not an 'us' and a 'them' and it's not a helping, looking down on people, that it's recognizing that people are human beings with equal sorts of needs but varying capacities and talents.

James Ayers:

Does the education system support that? The idea of integration at an early age?

Christine Bigby:

My expertise doesn't lie in the field of education, but the statistics are really clear that at primary school level, there's an increasing integration, but once children get to older children, they tend to then move into much more segregated special schools. And there seems to be an increasing demand from parents for special segregated schools. And that's because we don't do integrated schools very well. There hasn't been a lot of development around integrated programs and they haven't been adequately resourced.

We've tended to have this attitude, well, you get a bit of funding and we'll give you an aid, and that aid will help the child to integrate, rather than changing, again, the nature of schools and the nature of the structures so that they are inclusive of people with diverse sorts of abilities.

James Ayers:

We spoke about the benefit to the individual. What's the benefit of the social inclusion to families of people with intellectual disability?

Christine Bigby:

I think the benefits are enormous to families. At the moment, people live in a very distinct social space. So people with intellectual disabilities tend to live with their families, so they have good contact with their families, they have contact with paid staff, and they have contact with other people with intellectual disabilities.

Which means people live very intensive sorts of lives and families take on an enormous amount of responsibility as people move into adulthood. They can't back off at some of that responsibility. They have to continue to be the core sort of primary caregivers, whereas people without disabilities move out and they separate from their parents and build relationships and so have a different type of relationship with parents.

But people with disabilities can't do that unless they've got significant support. So by including people more in the community, we're going to reduce some of the demands that are made on parents to continue caring.

And a lot of the work I've done has been around looking at elderly parents who are in their 70s, 80s and 90s who are often still providing significant care for their adult child with an intellectual disability. And they are very anxious about what's going to happen to that child in the future when the parents die.

And so many parents would like to see that person be able to move out of home and to live more independently with the right sort of support, obviously before they die so that they can see that they're settled and can live more independent lives.

James Ayers:

What sort of advice can you give to, say, a family or carers that are struggling and that are looking for that social inclusion within their family?

Christine Bigby:

I think that that's really difficult. I mean, every family is unique and has its own unique culture and its own extended family, too. But I think the important thing is never to give up. There are some fantastic examples of people with very, very severe disabilities whose parents have kept fighting all the way through their lives and have achieved amazing things and an amazing quality of life for their adults with intellectual disabilities. So it's about just keeping up the fight, keeping up the pressure to get the resources that are out there, if you can shout loud enough. We need people to do that sort of thing, to demonstrate the type of life that it's possible for people to lead.

James Ayers:

Well, Chris, thanks for joining us today.

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