Sunday, 27 April 2014

Carers should act in solidarity - not martyrdom

Regarding the deaths of the three disabled children in New Malden, Surrey, and the apparent charging of their mother with murder, and the media coverage of the case, I felt the need to say this yesterday elsewhere:

"As some people will know, I am a carer, to my daughter Stevie. My own and my daughter's lives (since she got ill in childhood) have been made hell, both by the illness, but particularly by Social Services and the NHS, throughout and ongoing. My daughter and I are in solidarity with each other, have always been, and place the blame/anger where it belongs, and fight those agencies as best we can. Some others don't however, internalising the prejudice and callousness they suffer, turning it in on themselves, or worse, the people they are caring for. It doesn't help that we (carers) are constructed as martyrs either, especially in the press (as is currently happening) and few are able to resist that construction. And the state benefits from all of that, while lives are destroyed. In my opinion, carers need to become more politically organised, within a rights-based discourse (and not a 'martyr' discourse) in solidarity with the disabled people they care for. We've certainly been doing this since Stevie got ill, and intend to continue. There is a lot that can be said about this latest case, or more accurately perhaps, the media coverage of it so far (also some chilling 'comments by the public'), though this status may not be the place. What I will say though is that it is based on a lack of respect for both disabled people and carers, despite the hand-wringing and crocodile tears. When taken with the 'scrounger' rhetoric employed by the government, and the 'authors of your own misfortune' rhetoric that gave rise to that (yes, that's where my book comes in): it indicates some extremely sinister attitudes towards vulnerable people. If I appear a little too 'political' for some, there's obviously good reason for my actions."

Friends also pointed out to me some other issues:

1.That disabled people and carers have been positioned as competing groups, their need for support most often seen as an 'either or' situation;

2.That is is actually an issue of domestic violence when intimate caregivers harm or kill those close to them, with the dynamics of spouse-battering, as the media uses similar victim-blaming language and language that supports the violent person who snapped ("it was a crime of passion," "he just loved her so much he snapped," etc.);

3.Care is actually a crisis situation, and caregivers need more support, but also to not be depicted as martyrs or heroes but rather as allies and given additional outside support as needed, so that disability is not always thrust into a dynamic where one or more parties stay powerless, but rather true support and enabling of freedom stay at the forefront, so that disabled who need care and their caregivers are mutually supported and given what they need;

4.That most literature on caregivers is based largely on unsafe assumptions i.e. that a caregiver will even be available (when for some disabled people they are hard to come by and nobody in a family 'steps up' indeed there may be problems in family relationships preventing this etc), and that there will be financial support from some mysterious sources.

5.That both disabled people and their carers often live in fear and in crisis because of the lack of resources and support accessible to them;

6. That there has been an implied justification of these apparent killings, whereas if the children were not disabled, there would be an outcry.

These voices will likely not be heard in mainstream media. The seductive discourse of carer as (potentially violent) martyr has so far prevailed, hence my need to include my own and other, more critically analytical and political voices, here.

1 comment:

  1. This is a really timely post. I've been absolutely horrified by some of the reactions - including the wording of mainstream media reports - to the New Malden murders. It is to early to make any assumptions, but statistically speaking, the most likely scenario where any child is killed by its parent is the culmination of abuse. Disabled children are three times more likely to be abused at home than non-disabled children. So while it would in inappropriate to assume that's what happened here, it seems perverse to me that the general assumption is around some kind of multiple mercy killing, or a saint who finally snapped.

    I think the presentation of carers as martyrs is absolutely toxic for everyone. On the one hand, it assumes disabled people are taken care of and have all their needs met, when this isn't always the case and is occasionally quite the opposite. On the other hand, the thing about saints is that they're kind of magical, so they don't need any outside help, practical or emotional support - all they need is occasional praise, not necessarily personally, but in a general way from a politician, in lieu of making any real social or financial changes to help any of us.

    Anyway, an excellent post!