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Who cares?

In this video, different people with disabilities discuss their views on care.
DUNCAN: The central thing for me is we need to stop talking about caring for with people with disabilities and start talking about how we’re going to empower them to reach their full potentials.
ANTONI: Well, in Indonesia, we don’t have care services. We are looked after by our families. I have a good job, and, of course, I can pay somebody to care for them. But that’s something that I will never do. And also my dad keeps telling me, “As long as I’m still alive, as long as I’m still strong, “I will be with you all your life.” Finally, I have also a very…a lovely wife, who understands me very much and she learns a lot from my dad how to look after me, and then… Yeah, I will never, ever replace my family.
STEVE: People wouldn’t say, “Oh, I’m so sorry! “You should have someone here to help you.” Like, they wouldn’t say that to… ..if they see someone like yourself. But if they see someone maybe with a disability or someone generally in a wheelchair, they’ll come up to them and they will say, “You should be with someone. “I mean, where’s your carer?” They think, like, just because someone’s in a wheelchair, they need a lot of supervision. They can’t be by themselves.
VIVIENNE: When I came to live with my daughter - because we all decided it was becoming too difficult for me to live alone - my daughter had to become used to me taking off around the area alone on public transport the same as I was accustomed to do in Sydney. I saw red when my son-in-law told me he would ask a disability organisation for advice on the modifications for my new home. I told him I was quite capable of informing workers what modifications would be necessary for my daughter’s and my needs.
JORDANNA: The word ‘care’ or ‘carer’ feels like the person is going to do everything for me. And there is no way I need a carer. I’m very independent. I always have been. I have a great job. I finished university. I’m engaged. I’m a mother. I even bought my own home. And if I need help, I will ask for it. And that’s it.
DUNCAN: I’ve had safety briefings with all the different airlines in the past, where they’ve sat me down and been like, “OK, if there’s an emergency, you’re the last off the plane.” Because, basically, I’m going to get in people’s way. Like, I think that’s their justification. Recently, somebody actually handed me the life jacket. It was a very simple thing to do. It was a real difference, because they also came up, when they were going through the briefing, they gave me basic instructions of where everything was. “You’ve got eight seats to count. “And then you’re at the exit. It’s on your left.” They didn’t ask me how much I could see or whether I was partially blind, totally blind or whatever.
And, for me, I think that’s a much more empowering thing than just being told, “Yeah, if we go down, you’re the last off the plane.” It’s like, “Yeah, your life is worth less than everyone else’s” is the way I’ve felt when I’ve been told that in the past. I suppose that’s just the way it is sometimes.

Just like last week when we unpacked what we meant by the word “access”, this week we’ll be exploring the concepts of “care” and “support” and the different meanings that these words — and their associated actions — can have in the lives of disabled people.

Clearly, the terms “care” and “support” are not neutral and may have different meanings for different people. In the above video, our guest presenters provide their thoughts on the word care. It is clear that for most of them, “care” has very negative connotations or meanings. For example, Duncan, Steve and Jordanna all imply how “caring” for people with disabilities is disempowering and patronising. Duncan, Vivienne and Jordanna do, however, give examples of how support can be empowering.

All of their examples involve people with disabilities having access to opportunities — such as opportunities to explore their environments and express themselves in the ways they choose. As we discussed last week, the approaches taken to caring and supporting can significantly impact how disabled people feel, as well as their ability to access different opportunities in life.

Antoni expresses a different perspective from the others in the video. For him and his family, it is important that care has come from the family. Indeed, this seems a source of pride to Antoni and his family. While, as Antoni explains, this is typical of an approach to disabled people in Indonesia, it also illustrates how understandings of care and support are contextual and how these ideas may change over time, from place to place, and even over the course of someone’s life.

We provide a link to an audio description version of this video in the See Also section below.

portraits of the five guest speakers, laughing and smiling

Talking points

  • What do the terms care and support mean to you?
  • Do the words care and support have particular meanings relating to disability in your local context?
  • What role does the family play in providing care or support for people with disabilities within your culture or context?

In the next step, we’ll hear what Mel had to say about the terms care and support.

This article is from the free online

Disability and a Good Life: Working with Disability

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