Am I a Carer?

As a disabled person, who is also the partner of a disabled person and the mother of two disabled children am I also a carer?

In terms of some of the definitions used I am.  But what does that mean?  Of course i ‘care’ for my husband and my children.  That’s what partner’s and parents generally do.  Yes, I have to do a bit more, there are all sorts of extras in terms of form filling, extra costs, and continual chasing, arguing and sometimes battling with service providers, benefits assessors and hospitals.  My husband also does some of this, we, like any other couples, share the roles, he cares for me, I care for him, we both care for our children, and as they grow up they are also gradually taking on some of the reciprocal relationships.  For example they are both now old enough to go out with their Dad and ‘guide’ him.  They are both able to shop with him and find items in the shop.  Does this make them ‘young carers’?  I would argue it doesn’t.  They are just growing up and learning to give and take.

The reason I write this is because I confess I have a little bit of an issue with the definition of ‘carers’ in a policy context.  Please don’t stop reading.  I am not saying that parents of disabled children, people who look after disabled and older relatives and those who have sick and disabled family and friends are not doing a great job and that things are easy.  In fact far from it.  Things are tough.  Many people are exhausted and emotionally and physically stressed with very little recognition from society and are at present also battling against a government rhetoric of branding those not in work claiming sickness, disability and carers allowances as well as those on unemployment benefits as ‘scroungers’.  Most of these people are a long-way from being scroungers.  In fact, most of those who are unemployed or claiming other benefits are not ‘scroungers’.  There are many reasons why people find themselves in the position they do, yet this Government and the media are encouraging us all to believe that anyone claiming benefits or any help from the state is somehow lazy, faking or scrounging.  This just isn’t true. It is just that a few ‘bad apples’ have led to society egged on by the media and the government, to believe that not only the whole barrel is rotten, but that the whole orchard is!!

So why am I concerned?  As a disabled person I worry because a lot of my work is with other disabled people who are living and trying to continue to live independent lives in their own homes with support from a range of sources including paid carers funded by the likes of social services and the Independent Living Fund and care and support from family and friends.  For some there is no option, but to pay for support and for others they may choose to have some care and support from friends and family whilst they pay for other types of support.  And for others, they have no choice but to rely on family and friends for all their needs because funding sources and services are not available to meet their needs or they are left without adequate support because they don’t have friends and family and there are no funds and services available to meet their needs.

The key to a system that works well for disabled people and their family and friends is that they have choice and a system that works sufficiently to support the disabled people would not put too much responsibility on un-paid family and friends.  Disabled people have reciprocal relationships with friends and family.  Most do not choose for their family to be so exhausted by these responsibilities.  They are family and friends in a stressed situation and who under current policy speak are now defined as ‘carers’.  Disabled people generally want to be able to see their family and friends as exactly that, they don’t want them to be in the stressed and exhausted situation that many find themselves in.

The way I perceive it is that as soon as you begin to see a group of people identified in this role it begins to take the emphasis away from the sick and disabled people they are caring for.  I use the term sick and disabled people in the widest possible sense to include people with long-term health conditions, physical and sensory impairments, learning difficulties, mental health needs and those on the autism spectrum.

Campaigning for policies specifically in relation to carers, for me, necessarily casts the disabled person as dependant and therefore ‘less’.  As a parent, whilst my children are still young my role is to advocate on their behalf, to make decisions that I and my partner regard to be in our childrens’ best interests.  We do this as parents, because that’s what parents do.  The fact that my children are disabled means sometimes our decisions are more complex and the practical arrangements of providing them with a range of opportunities is more challenging and more expensive, but essentially we are parents not ‘carers’.

How many of you reading this have disabled children? are you a ‘carer’ for your non-disabled children? has the term ‘carer’ been used with you when talking about your disabled child?  Is the term ‘carer’ used in relation to your non-disabled child?

Like any parent, most of us want our children to grow up to reach their full potential, to have meaningful and happy lives.  For some of us that will be about supporting our children through A levels and University etc.  for others it will be about encouraging them to achieve vocational courses and for others it will be about advocating and supporting our children and young people to find fulfilling living arrangements as  adults that enable them to have as much choice and control as possible, to be happy, and to be treated with dignity and respect etc.  For me, the goals as parents are all very similar.  But, somewhere along the way the parents of disabled children and young people seem to become regarded as carers.

So, going back to the beginning of this post, as a parent and partner, I see my role is to support my children to grow up to be able to make choices and to help them to find the resources to be able to fulfill their choices and ambitions.  part of that role is to give them opportunities to try different things, to develop their independence and make choices.

For parents of children with complex needs this is a very challenging role, but many people still want the same for their children, it’s just the path to get there is more complex and challenging, the solutions to finding communication tools and resources to use those tools to enable choice and control are all more challenging, but isn’t this what most of us want as parents?

So why are we cast as carers?  Why do the policies not look at the needs of the disabled people, whether they are children or adults?

If we campaign for better services and more resources to support our children and disabled / sick / autistic / mentally ill friends and relatives then, by definition our own lives  as parents / carers will become less stressful, so why do we need to campaign as carers?  If the goal is to support better provision, acceptance and equalities for our loved ones then wouldn’t it be good to move forward by working together to support disabled people in their campaigns for equality rather than by having separate communities of ‘carers’, communities of ‘disabled people’, communities of charities doing work on behalf of disabled people, and even within that different groups of disabled people and different groups of carers.

It frustrates me that on the whole most people are trying to achieve the same general goals and if those goals really are to support acceptance and equality for disabled people then shouldn’t we be doing this with disabled people and not for them?

I’d be interested to know what people think of this notion and whether anyone else has ever thought about it in these terms before.  Thanks for reading.  🙂

About Violets Diary

Visually impaired Mum, with VI hubby, 2 disabled children. Disability campaigner, novice blogger and tweeter. Trying to put the world to rights and share our journey and positive stories.
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13 Responses to Am I a Carer?

  1. My niece grew up being a young carer to her autistic brother. She now cares for her autistic son and my sister, who was recently diagnosed with CFS/ME. My sister, in turn, helps care for my recently bereaved father and, while my mother was being treated for cancer, she was taking Mum to all her appointments and running errands for her.

    My husband is also my full-time carer so cannot work, and the family who care for my son are so devoted to him that the husband has given up his job to help out his wife, who has been unwell for some time.

    Carers do NOT get anywhere near the financial and emotional support that they deserve!

    • I agree with all that Mrs T 110%. My point is not to devalue the work that family and friends do and the lack of support, both emotional and financial that they are under. As a disabled person i am just asking the question as to whether we need to use the language of ‘carers’. I think many couples or families will come to a mutual decision about how they manage their roles in order to support their loved ones and this may lead to stress and financial hardship due to not being able to work. That decision affects the whole family, not just the ‘carer’. Very often the ‘cared for’ person is under similar levels of stress and financial hardship, although may be for slightly different reasons. I am just asking whether there is another, more wholistic, way we could look at the way we use terms such as ‘carers’ that is more inclusive of the disabled person and the need to recognise the issues as affecting a person and those around them rather than, as now, policy makers can choose to see ‘carers’ and ‘disabled people’ as two seperate groups.

      Please don’t think I am trying to deny the hard work and incredible commitment of many people. xx

      • Oh no Violet, I didn’t think that at all! I was only thinking to add some weight to what you were saying by leaving a comment about my family’s situation for others to read.

        Some carers are paid for what they do (which is why my son’s foster father is able to leave his job) but so many go unrecognised – including people with their own disabilities who care for somebody else. If there’s a way to bring these “hidden carers” to the forefront of media attention – including a different way of referring to them – then I want to find that solution right along with you 🙂

  2. This is such an interesting point. Somehow, it’s important to value the support that friends and family give (and our society currently GREATLY undervalues it). But I agree, the language of “carers” IS problematic, because it does put the “caree” (who may also be a carer, just to complicate matters further) in a dependent, “less than” position.

    Like yours, our children could well have been labelled young carers by virtue of the fact that they were adept at guiding their father from an early age (tell you what, though, it made them so much safer on the roads than their peers) – and reading/finding things for him. But they benefit just as much as he did/does from that exchange. Strictly speaking (according to social services/ doctor etc) I would be considered a carer too, but it just isn’t that simple. And I’m not comfortable with the label.

    I set up and ran a carers’ forum for a London borough some years ago now, and at the time, it seemed a good response to the needs of people who desperately needed support, information etc. And it did that job, but there was always, I felt, an artificial line drawn BETWEEN carers and disabled people, which was often potentially damaging.

    I realise I’ve just wittered on and on, without coming to any real conclusions. But you make some excellent points. There must be a way of moving forward without that false separation between disabled people and carers. It would be far healthier, in my opinion.

  3. I think there are probably a few situations where the “carer” terminology is useful. When a six year old child with a disability goes into “respite” for a weekend, it’s not to serve the child (*the person with the disability*), but to give the parents (carers!) a break. Most parents of most “regular” six-year-olds probably rarely, if ever, would take a holiday or need a break, and most six-year olds (disabled or not) would rather be with their family than go to “respite”.
    But yes, I get your perspective. I also can’t stand when paid support workers are always referred to as “carers”! They may or may not care, but they’re paid professionals/workers, for goodness sake!

    • I think that is partly my concern as a disabled person. I agree re. needs for respite etc. and parents of disabled children may be carrying out various medical interventions that wouldn’t be the case for non-disabled children, but at the end of the day we are still parents / family and the children / cared are the disabled people. I think in terms of respite, there is very often a need for a break, but I would argue that it has to be seen solely as a benefit for the ‘carer’, if the ‘disabled’ person is at the centre then it is possible to see respite as being a positive experience for that person and for the whole family unit. OK, most 6 year old children wouldn’t go away without their families or vice versa, but equally most 6 year old children wouldn’t need their parents to provide complex medical care etc. At the end of the day the service is being provided in order to support the whole family unit to enable them to continue to live as full a life as possible.
      Thanks ever so much for commenting.

  4. Special Needs Mum says:

    I understand completely what you’re saying, as a parent-carer myself. But as someone involved with our parent-carer forum, I can tell you that the state uses the term ‘carer’ so that these parents can be identified by services as those who may need extra support than regular parents. E.g we recently qualified for a GP carer’s break payment because I was registered as a carer with the doctor. It also means that I am flagged up and invited for a free flu jab because they don’t want me getting sick!
    It’s both a label for statistical and admin reasons but has very powerful emotive connotations, as you have so eloquently written in your post.
    What is also interesting is that I will no longer be able to receive carer’s allowance because I now have a two day a week job (from home) earning over the paltry limit of £105 a week or so. Am I doing less caring for my two autistic children? No. Am I able to earn to the limit of my potential now that they are teens and I should be able to work full time? No because, obviously, I am needed much more than a mum of similar age ‘normal’ children, not least to get them to and from their special school every day or be here for them when they refuse school.
    It’s a minefield and I applaud you for your excellent post. Tania x

    • Thanks Tania, I understand all the issues for policymakers etc. I have a very good friend who used to be the ‘carers’ lead for our Adult Services and he and I constantly debated these issues and I’m not sure I have any answers to how the needs are met in policy terms, but as a disabled person it does sometimes worry me very much that when policies get too focused on the needs of ‘carers’ that people sometimes forget that there is a disabled person at the centre and that the aim is to support a family / personal support network. I also know that I come at this with quite a unique perspective and would love to have more of a debate about the language, but without undermining the very real need for support for families. I, too, work from home 16 hours a week so that I can be here for my children and be flexible with school and medical appointments etc. which is the way it needs to be to provide my children with the support they need, but I guess i would prefer that to be acknowledged by the fact that i’m a parent of disabled children rather than because I’m a ‘carer’. Anyway, that’s enough waffle as I could get sucked into this for ever.
      Thanks again for commenting. xx

  5. Deb says:

    I see myself as a mum, parent and a carer. My role exceeds much of what an ordinary parent does and its nice to have that recognised. Without that recognition I would feel even more undermined and forgotten. You know, I’m a FT carer and mother who can’t properly work because of my kids needs so I think it is important to recognise what I do and to value it. However, I don’t think this takes away from my children’s identity, at least I certainly try not to overuse my status. In fact I hardly mention it unless I write about it on my blog.

    However, I do see your point that if we focused on the disabled person we could then help the carer as well. Certainly I feel that if my two ASD children were getting the education, therapies and support that they so desperately need then I wouldn’t be feeling so stressed and depressed. and perhaps carer charities would not need to be so vocal. However, even if my children received what they need they would still need help and I would still be a carer. Recognising me as a carer is also a way of recognising my children and if I didn’t have my caring work recognised then it would deprive my children of essential support.

    Unfortunately care is undervalued and rubbished in this country so it saddens me to read that it is such a loaded term. I personally think we need to recognise care because most of us at some point will need care whether its through disability, illness or old age. Its time care got more respect because in a way that recognises the caree and how important they are in our society. With better care, I think, we can then better look after other people but in a way that doesn’t deprive them of their dignity and self respect and ‘control’ over their lives (if possible).

    Gosh, just realised my long response. As you say, Violet, its a minefield of a debate.


    • Thanks for your comment Deb, a minefield it definitely is, and I don’t think there are any easy answers. I do think ‘care’ is undervalued and not recognised, but I also think there is a very real issue for many disabled people about being seen as dependent. I wonder if we used terms such as support rather than care. I guess it is something that I have many debates about with the people I work with and I’m also conscious that I am now seen as a ‘carer’. I think it is a fault of the system we operate within that does not allow us to recognise the extra needs and challenges of parents of disabled children without having to define us as something other than parents.

      • Deb says:

        Well, I don’t think the word ‘parent’ encompasses all that we do for children with disabilities, SEN etc so we have to have another label but I also think the issue is in how we use labels. I rarely use my carer label and in a similar way I dont use my childrens autism and aspergers labels. They are only used to get support.

        In terms of the word support, yes there are some disabled people that this term would be applicable but for others it wouldn’t be. My alzheimers grandmother needed intensive care for many many years, partly provided by my grandfather, then my mother and in her final days the staff in the nursing home. Support would not have been enougth to define what she needed; she was totally dependent on those around her.

        I think that care has different meanings for different people. Perhaps the solution is for people to have choice over how they want to be labelled or defined; some may require support, others will require more intensive care.

        Its a great discussion and reminds me of the time I studied politics of the human mind/body.

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