Do we care about independence? And is independent living compatible with being cared for? These are questions that crops up again and again for disabled people when thinking about the way we are able (or unable) to live independently in society. Lorraine Gradwell explores…
Let’s be clear, I’m not talking about caring in the sense of friends, family, pets or lovers! Most, if not all of us, have people we care for; people we love, and of course we all look out for each other. That’s what a caring relationship is. But the words ‘caring’ has many meanings and connotations. It’s tempting to reach for the dictionary at this point, but instead I’m going to quote Humpty Dumpty: “When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean — neither more nor less.” “The question is”‘ said Alice,”‘whether you can make words mean so many different things.”
And so, how many different things does ‘care’ mean? As outlined above, it can mean a loving and mutually supportive relationship. Also, parents care for their children, but other children are taken into care. Ex-offenders traditionally received care and rehabilitation, we have care homes for elderly people, and nowadays many disabled people have paid carers, or informal/family carers.
So ingrained is this particular concept that the spellchecker on my computer insistently offers me ‘Carer’, as if the word only exists as a proper noun. And in many instances, as the list above shows, the way the word is used implies that at the very least, there is oversight of the person being cared for.
Quite opposite to this is the concept of ‘independence,’ which in the world of disability, is not about being isolated, rather it is about autonomy and being in charge of our own lives.
Dr. Adolf Ratzka says quite brilliantly of independence:
Independent living does not mean that we want to do everything by ourselves, do not need anybody or like to live in isolation. Independent living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted.
We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and interests, and raise families of our own. We are profoundly ordinary people sharing the same need to feel included, recognised and loved.
Now, not everyone has the capacity to be fully in charge of their own lives all the time, and of course at those times they need support, guidance and direction – someone to help them make decisions to the best of their capacity. Some disabled people may need this kind of support 24/7.
But maybe this is the key to what worries me. The kind of support required to foster independence – the theory being that just about everyone can make choices – is multi-layered and demanding. For example, it may just be quicker on a working day to decide what Fred/Freda is going to wear, rather than give them a choice. It’s also almost certainly easier to cook ‘the usual’, rather than involving someone in planning the meal, and the skills required to build someone’s confidence to make their own decisions may be scarce.
The question is, can a ‘caring’ relationship support independence? The kind of independence outlined by Ratzka above?
Now don’t get me wrong (I often seem to be saying that), I know that almost all carers are loving, selfless people who aim to give the person they care for the best life possible – often at great cost to themselves. I am not concerned here with the good/bad carers debate, rather with the concepts of care and independence and how they fit together.
Carers, I think, often get a rough deal. If we accept that as a given we can also see how that rough deal might impact negatively on the caring relationship, placing both parties in a rather invidious position. Moreover, if the person being ‘cared for’ has behavioural issues and needs a certain level of guidance, support and direction – and yes, possibly control – well, that is quite a sophisticated task. To deliver that task in a way that supports and promotes independence and autonomy requires a level of skill, competence, and understanding that most of us can only aspire to.
But of course not all ‘cared for’ people have behavioural issues, yet even so the cared/cared for relationship has connotations of control and oversight, and this is what needs to change if ‘care’ is to support independence. That means the support that carers get needs to change, that the relationship between carer and cared-for needs to be seen as one of equals, with adequate and appropriate support to both parties.
A tall order? Yes. But even so, for me the critical issue is how we can ensure a balance in the relationships between cared and cared-for that respects all parties’ positions and supports all to be in control of their lives and live life to the full. I think this will only be possible when we, as a society, become less focused on ‘looking after’ people, and more focused on supporting people to live their own lives as they wish – and that includes ‘carers’.
By Lorraine Gradwell