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. 🙂