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Understanding support

In this video, various academics in the area of disability studies share their perspectives on disability support.
MAN: FutureLearn. [THEME MUSIC] UNSW Australia. Understanding support.
TOM SHAKESPEARE: Different people have different roles in facilitating a good life. But when it comes to people with disabilities, I think it starts with the family. And so it’s about safety and security and meeting those basic needs. It’s also, I think, about not overprotecting a child with disability. It’s about allowing them to be age appropriate. If other kids that age do stuff, well, generally speaking so should they. And I think that often with people with disabilities– children with disabilities– there is overprotection. People are infantilised. And for the best motives– parents are worried. So I think that it starts with family.
I hope it extends to other people, though– children in the same class, workmates, teachers, neighbours, people in the street even. But I think most importantly, professionals, because they are the folks in society to whom we give special responsibility to ensure that the needs of particularly disabled people, people with ill health, older people, are met. So each of us in different ways has obligations, and even in very small ways we can make the lives of children and adults with disabilities better, or we can inhibit their well-being. Just take one example. If we leave our bicycle across the pavement, then me as a wheelchair user can’t get by, and a blind person can’t get by.
If we neglect the neighbour, the older person who has no friends and may be at risk, then we’re not developing the sort of inclusive community which means that that person might get their shopping done, or might have somebody looking out for them, or just somebody to talk to once in a while. So I think we can all play different roles.
ANTONI TSAPUTRA: So when we talk about the support that Indonesian people with disabilities have, I would say most of the support would come from the family. Because– we have some organisations which provide disability services, but the number is very small. And there’s also a lack of human resources. So these services are only limited to providing people with disabilities with mobility aids, or wheelchairs, or hearing equipment, or something like that. Not all people with disabilities also live with their families. I think there is quite a big number of people with disabilities still living in institutions. And they live in these nursing homes managed and owned by the government.
And I would say that we have really limited services, which is really different from what you have here in Australia. You have a respite service, carer services, something like that. But for people with disabilities in Indonesia, their support mostly comes from the family.
JOHN GILROY: So in many of the communities that I’ve worked with as a researcher, or in community development, what’s crying out is adequate supports for not just individuals’ support needs in connection to their disability, but also those in connection to mental health. But it’s not just mental health. It’s also social and emotional and cultural well-being. So people often identify health as the absence of disease– so good health is when you have the absence of disease. But one can have physically good health, but not good spiritual health. But the challenge that we have in the current service system in the Western world, is that they like to separate definitions of mental health and disability.
But one can have depression and have experiences of disability from that. But their experiences of depression could ebb and flow throughout the year. It could be linked to stress at work. It could be linked to their environment. It could even be linked to a particular season in a particular year. So if it is very cold outside, and they have arthritis, they’ll be home all the time. So they’ll be experiencing something equivalent to cabin fever. So by having this government dichotomy of mental health and disability, it actually disadvantages people. Because they may have disability, but they really need supports for their mental health, emotional, social well-being. But they may also– a person with mental illness may need adequate supports.
And when they don’t get it, they can experience disability, because of the stigmas attached to specific conditions of mental illness. With those stigmas they will then experience social isolation, they will then feel ostracised from their community. And if they have a job they may be seen as unproductive. So it will impact on their personal life, impact on their work life, which would then impact on their physical and mental health. And it’s just an ongoing negative spiral. And someone has to put a block in to stop that spiral from continuing. And only by– I would argue– by having support systems that cover both mental health and disability, only then can you actually address the social, emotional, spiritual needs of individuals.
Because at the end of the day, we are dealing with human beings. We are not dealing with– we’re not just dealing with buckets of money.
IVA STRNADOVA: We do need to understand an individual in the context of their life. If somebody has experienced in the past sexual abuse, that will undoubtedly impact how they perceive their current situation, what their aspirations for a future might be, how they value themselves. We all go through many different transitions in life. And I think one of the really important aspects that the research shows us is the importance of transition planning. So being really proactive– not starting to support a person and giving the person skills to be able to manage the transition very well just at the moment when the transition is happening. We know from research that this is far too late.
So it really needs to start on time. You need to have various stakeholders involved, and very importantly, you need to have the person involved him or herself. And that is one of the most, I would say, alarming things that is coming up from my research– it doesn’t matter if we are looking at the school age or somebody who is an adult– that it is often the person with disability who is left out from any transition planning. And yet we are planning for their future– for their future life.

As we will emphasise in this step, understanding support really means understanding someone’s individual situation. In other words, in order to understand support, you need to understand human diversity.

In the above video, various presenters illustrate how support can operate differently depending on someone’s context. Tom presents an overarching perspective on support, explaining how, within his context, there are various layers of support moving outwards from the family. He also talks about support for children and older people, reiterating that support needs will be different for people across their life course. It is for this reason that Iva stresses the importance of supporting people across different life stages.

Antoni and John emphasise the importance of the policy context in determining the kinds of supports that one receives throughout their life. They give examples of how their local governments frame disability and support, and how this impacts what is supported and how.

Together, the speakers emphasise how people’s support needs can vary depending on:

  • the nature of their impairment;
  • their age or life stage;
  • their social, cultural and political context;
  • other aspects of their identity, such as ethnicity, gender or sexuality.

Talking points

  • What kinds of support have you needed in your life? (If it helps, you might think in terms of different life stages, such as childhood, adolescence, and adulthood.)
  • How have the kinds of support you have needed and the kinds of support you have been able to give changed over time?
  • Are there other factors that might influence an individual’s support needs, other than the ones mentioned above?
  • Why do you think “support” is such a dynamic and individual concept?

In the next steps, you will see examples of some of the diverse support needs of people with disabilities, as well as some ways in which people with disabilities might be supported to live good lives.

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Disability and a Good Life: Working with Disability

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