Autonomy, dignity & independence Html https://www.emerge.org.au/autonomy-dignity-and-independence/ Pdf https://emerge.org.au/wp-content/uploads/2023/04/autonomydignityandindependence-final.pdf Comment: It's not a topic I'm that familiar with so I found it a bit abstract: I would have preferred more examples Start: Your role as a carer of a person living with ME/CFS has no doubt changed over time. As you have continued to learn more about their needs and preferences, the importance of ensuring their autonomy, dignity and independence may become a priority for you. This factsheet has been designed to support you to talk with the person you provide care for about how to maintain or increase their autonomy, dignity and independence. Defining key terms Autonomy is commonly understood to refer to the capacity of a person to choose and acton their own preferences regarding their life and their body. As a carer, you might enhance personal autonomy by encouraging the person you provide care for to choose activities that they love and support them to access these in a way that is helpful for them. Dignity is the right of a person to be valued and respected for their own sake, and to be treated ethically. You might honour the dignity of the person living ME/CFS by advocating for others to treat them with respect, non-judgement and acceptance. Independence means freedom from outside control and being able to direct one's own affairs without interference. You can support the independence of the person living withME/CFS by encouraging them to make their own decisions and to take ownership of activities, projects and tasks.
I think its heart's in the right place, but some of it seems to be lifted from practice that isn't necessarily ideal for people with energy limiting illnesses. Talking about SMART goals and role playing scenarios might not be very appropriate for someone whose illness is severe enough that they require care support. It is good to talk about these issues, though, and they need a lot of thought and reflection if you haven't been trained in it. When I was caring for my mum, I kept finding myself questioning how I approached things—sometimes I'd realise that seemingly minor things weren't actually straightforward from an ethical point of view. Assumptions always have to be questioned, and it needs to be recognised that manipulation can creep in if carers are struggling to get enough done in the time they have available.
I'm writing something here for now just to bring this one back up. I haven't had the chance to read it through and think in detail but know when it was first up I did think that these three terms are pretty fundamental in the issue of how we are treated and the paternalism and lack of respect underlying most people's interactions 'at us'. I also think that with the various consulations on the go that remembering that whatever the condition it seems basic that a system remembers these basic human needs that people do deserve and that we might be debilitated but deserve what we can say to be heard and what we are able to despite all the debility achieve for it to be acknolwedged and who we are to be respected. SO perhaps we do need to unbundle this.
