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Thoughts on caring

Tuesday 15th December, 2009 in Health, Parenting, caring, feminism by Melaszka | No comments

When Suzi asked me if I would mind writing a blog about my experience of being a full-time carer for my elderly parents, I thought it would be easy to put my thoughts down on paper. Actually, though, it’s been extremely difficult, not least because I’ve found myself going through several drafts agonising about whether I’ve written too much about me and not enough about my parents.

My anxiety on this point probably stems form the fact that, like many of my sex, I have probably internalised the belief that we women have a special caring gene stamped all the way through our DNA like “Blackpool” through a stick of rock, and that, therefore, if we do not devote every waking moment of every day to others, or dare express any needs of our own, we must be “unnatural”, “cold” and “selfish”.

But we don’t need to internalise this belief, as there are always plenty of people ready to remind us of it. Not long after I first moved down here, I left a post on an internet message board devoted to advice on family problems, asking for tips on how I could build more of a life for myself around my caring duties for my parents, as I was beginning to feel a bit isolated, having moved hundreds of miles from my support network of friends to a more provincial community where there was a lot less going on. I was astonished to receive a response suggesting that I should “get local authority help for them as soon as possible, as it’s not fair that the care of your vulnerable parents should be dependent on someone as incredibly selfish as you.”

Since people like that are going to damn me whatever I write, I therefore make no apologies – this blog entry is focused on my feelings and experiences alone. Not because I don’t think my parents’ feeling are important, but because I’m not them and I can’t speak for them, I can only speak for myself.

One thing which I find very curious and very sad is that, when I tell people that I care full-time for my elderly mother and father, they look at me with sympathy, as if I’ve just announced that I have a terminal disease. It was a voluntary decision – I love my parents, enjoy their company, consider myself very lucky indeed to be spending large swathes of time with them while I still have the chance, and (while I acknowledge that caring for them has meant some very difficult compromises, as well) giving up paid work outside the home to go and live with them has also given me the time and space to do a lot of things I wouldn’t have been able to do while juggling a full-time job – and yet many of the people I meet assume that I feel like the child caught when the music stops at the end of a game of Hot Potato.

This probably stems largely from the societal belief that the only work which matters is paid work outside the home.

As full-time parents, the unemployed and those on incapacity benefit will know all too well, if you can’t answer the question “What do you do?” with something that involves a big salary, then you are all too often viewed as boring, valueless to society, insignificant and possibly congenitally stupid. Carers have little status and few rights in our society – carers’ allowance is derisory and when I do need to re-enter the workforce, probably in my 50s or 60, I’m a bit concerned about how potential employers will view the large “gap” in my CV.

But I’ve found that caring for elderly parents has also really brought home to me the social prejudices that exist about single, childless women. First of all, there was the automatic assumption in my wider family that I, not my married sister, would be the one to care for my parents. While I was more than happy to fulfil this role, it was because I wanted to, not because I thought that it was my rightful duty, and I still resent the assumption that, because I didn’t have a partner or children, there couldn’t possibly be anything at all important in my life that I might mind giving up.

Then there’s the caricature stereotypes that people try to hang on you. While working single women who live alone are often decried as hard-nosed, ambitious bitches, fecklessly ignoring their biological clock in a quest for ball-breaking career dominance and heading for a lonely, unfulfilled old age as their rightful comeuppance, at least people assume they are having some fun in the present. But there’s something about the stereotype of the “woman who stayed at home to look after mother” that has no redeeming features at all. I am presumed to change every night out of my horn-rimmed glasses, hard-wearing tweeds and sensible shoes into my high-necked flannelette nightie, before wistfully dreaming of the man I will never now meet who might have made sense of my life.

I think being a full-time carer for my parents has really brought home to me how narrowly most of society views fulfilment, as being entirely dependent on having a partner, children and/or a high-paid job. And where women are concerned, let’s face it, largely the first two.

People often say to me “Well, obviously, your sister can’t do more for your parents – she’s got her own family to think about.” To which I want to reply “And who, then, are her parents? Strangers?” As a society, we are so locked into the idea of the heterosexual nuclear family as being the only unit that matters, that we are in danger of closing ourselves off to the other relationships and paths that are possible.

Covert Eugenics

Monday 14th December, 2009 in Health, Parenting, feminism by Dorri | No comments

If you knew how many attempts I’ve made at this you’d laugh! But Suzi asked if I’d like to contribute, and I would, so I guess I’m just going to have to get used to writing in a new style – I don’t suppose anyone really wants to read an essay at the moment.

Anyway, Suzi wants me to talk about the perspective of a disabled feminist – so I’ve decided to share a story with you.

A few months ago, during a phone-call, my mother asked me if there was any point in her still keeping my old baby clothes.  I can still remember looking through them as a child; they were stored in my old pram body, I have no idea what’s happened to the metal frame. I was fascinated by them. Partly, I suspect, because the idea that I had once been so small was just so strange and partly because I liked seeing how much care my mother took of them. I found it reassuring. The care given to these tiny clothes seemed to demonstrate how much she must have cared for me as a child; the possibility that one day I too would have tiny infant of my own to care for; and that she would be dressed, at times, in my old well loved garments; it was the past the present and the future all tied together.

My mother’s comment made it clear that she was abandoning hope that I would provide her with a grandchild. It underlined something I knew, that it was getting very unlikely that I was going to be a mother myself. I was incredibly hurt by my mother’s comment. I knew it was a rebuke, the idea that I had let her down by not providing a baby.

So far this is story that many able-bodied women will know or have seen. But let me give you a little of my background.

Seven or eight years ago, when I was about 30, I knew time was getting short and I knew I wanted a child. Circumstances hadn’t worked out, my long term relationship had ended some time previously and there was no real sign of a new one coming. so I started thinking – could I do this alone? Getting pregnant didn’t seem like the real problem, that was the reality of being unable to work alone, broke, and looking after a child. While I thought I might be able to cope I was not naive enough to think that life as a single mother was going to be easy.

Anyway I thought about this, mulled it over – I became more convinced it was something I wanted to do, and I was open with my close friends about my thoughts.  Of course just when you give up hope of a relationship they do have a tendency to appear!  He was one of the people that knew of my plan and I was clear that us getting together only meant that I was prepared to delay getting pregnant by a year or so – if at that time he didn’t want to be part of it that was fine, but it was going to happen.

One person I hadn’t shared this plan with was my mother. A year later and my partner and I began planning. We both had disabilities, the same one in fact.  So I talked to my doctor about how to go about this and give my child the best start I could. Step one would be reducing my medication, we both knew that this meant a big increase in the amount of pain I was going to have to deal with, and that almost every other symptom I had would get worse but it would be worth it.

It was at this point, with a partner on board and my doctor not just on my side but almost as excited by the idea we were – which would have been a minor miracle if I hadn’t spent several years finding a decent doctor, that I talked to my parents.

My mother wanted to know if I was sure – I didn’t bat an eyelid at this, I assumed she was just be a protective mother but I had no idea what was really behind the question, or what was coming next.

 ‘Do you really think you should have a child with him?’

Now I was worried, had she seen something in him that I had missed? But no that was not what she meant.

‘I mean with his condition he really shouldn’t be a parent should he.’

At that point I felt sick. I remembered the little things my mother had said in the past. When a mutual friend of ours had committed suicide after battling with severe depression as well as the same condition as I had, my mother had said ‘perhaps its better that she is has been removed from the gene pool, the whole family is a bit…’  

I pointed out that he had the same condition as I did – she ignored that. I repeated the point adding that I thought it was probably slightly more relevant that I had the condition, after all I was the one contributing a life support system as well as DNA to the child. ‘Well I’m just trying to be helpful’, she said.

Those words are so … I can’t think of the word, but it feels like every time I have to deal with other people’s problems with my disability they excuse their actions by saying ‘Well I’m just trying to be helpful – there’s no need to be ungrateful.’ And now I had to hear it from my own mother.

I don’t know how to explain the level of pain this caused me; even if there had been a chance of there being some truth in what she said it probably would have hurt, but my condition is not genetic; it will have no known impact on my ability to carry a child to term, or on that child’s health.

But really, what could I expect of my mother? I have to remember that she trained as a children’s nurse, that she had dealt with neonatal babies, and all this happened at a time when it was normal for a disabled baby to be taken away from its mother, at a time when it was thought that she would be better off is her child died, and if that child was disabled enough it would simply be left uncared for in a room, probably the sluice, to die, slowly of neglect and starvation. I have no idea whether she was one of those people; I know it is easily possible, but how do I ask her? And how can I expect her to understand how much her opinion, her frankly eugenics-based opinion hurts and attacks me.  When she was a child the Nazi’s forced sterilisation on approximately 400,000 disabled people.[1] The compulsory sterilisation programme for genetically undesirables virtually ended in 1939 when the Euthanasia Programme was introduced – it is estimated that in the 4 years the programme was in operation at least 70,000 people were murdered.[2] As if this wasn’t awful enough the Allied authorities were unable to classify the sterilisation as war crimes because by the end of the war at least 11 European countries and 29 American states had passed similar legislation with regard to “unfit persons” which included both Black and disabled people. Compensation could only be provided by the West German authorities if the claimant could prove that they were not genetically alcoholic, epileptic, feeble minded, schizophrenic, manic-depressive, or in any other way disabled. So in their eyes no crime had been committed?

This is the world my mother grew up in – how is she supposed think about me. I am her daughter but I am also one of those people. The ones you don’t see on TV, or at school, or at work, or in the media. Don’t think I’m not furious, at her, and the world which condoned these actions. I am. Yes, my mother and I had a massive argument about it – the idea that she was using the theory of eugenics horrified her, she was angry with me for making such an accusation.

We pretend now that this didn’t happen – bigger things have happened and dealing with them has subdued that topic. But I am left caught between a mother who wants me to provide her with a grandchild but doesn’t want me, a disabled person, to breed. So, when she asked her question about my old baby clothes, all that followed was a hurt and painful silence on both sides.

[1]               J. Morris 1991 page 48

[2]               Ibid. page 49 & 54

The silent death; does it need a less invasive test?

Saturday 2nd May, 2009 in Health, Media Personality, sex by andieberry | No comments

The silent death is cervical cancer. I knew a little about cervical cancer, skipped appointments for the screening because its embarrassing and uncomfortable and occasionally when I did turn up got the ‘abnormal’ diagnosis. I had the abnormal diagnosis three times ,dutifully turned up at the hospital, had an electrode strapped to my thigh in order to power the electric cheese wire that sliced off the abnormal white spots in my cervix. Was I scared?  No- in fact I got quite blase about it- after all I’m young , healthy and I’ve had kids (some doctors I saw when I was younger, claimed that most ‘womens’ problems disappear after having kids!). Then came Jade Goody.

Has Jade Goody done for cervical cancer what Kylie Minogue did for breast cancer? The signs look good-  an average figure for more women going for smear tests is 40%,  so the short life of Goody was not in vain. What is never discussed in the media is one of the real reasons behind why women don’t go for smear tests. Women have that discussion- its embarrasing , sometimes it hurts, you worry about what the doctor or nurse thinks about your pubic hair, does your vagina look ‘normal’? Does it have a funny smell?

Ultimately its the invasision of privacy-  knickers off , lie on the bed and open your legs to ,sometimes, a complete stranger, and then have a cold instrument inserted in order to take a sample of cells. Ok prevention is better than a cure and early detection is crucial, but in these days of stem cell research , the mode of injecting medicine through the pores rather than injection and keyhole hysterectomies is there any possibility of a non invasive way of detecting cervical cancer?

Autonomy, mental illness, and the stories of others.

Thursday 26th March, 2009 in Health by Suzi | No comments

Here is a story you all must go and read immediately. Like, right now, immediately. Go on, I’m going nowhere, I’ll wait.

I could have written about two thirds of that myself. Except for the bit about not ‘complying’ with treatment because I always take my meds when I’m on them, and I always go see my Doctor exactly when he says I should.  It’s interesting for me, to see someone else’s view of living in a depressed/depressive state. Other people will (and frequently do) tell me that my world isn’t ‘real’. It is. To me- because that is how I live.

We all have our own subjective reality. In my reality running is a torturous experience, no longer something joyful- two spinal conditions and some hefty asthma have removed the fun I once had from running. For my dear friend D, running is an amazing experience, a chance to ignore the world and participate in something almost spiritual. Both our experiences are real, both are valid.

A reality of living with mental illness is that people will question your reality. This questioning is an attack on ones autonomy- if I am not experiencing the real world, how can I make real decisions? There is an assumption that if you have a mental illness you cannot function in the world, that somehow you are not ’safe’. For some people, this is true. Some individuals living with mental illnesses are unable to cope with the demands that ‘normal’ live places upon them. I’d argue that as many ‘normal’ people are just as unable to cope. For every individual who manges their condition, knows their triggers, has a system to deal with unepected episodes, there are ten ‘normal’ people saying hurtful things, and denigrating that persons ability to function. They all have an anecdote ‘oh well this crazy woman who had depression….’, they all have ‘advice’  ‘oh well I hear yoga works’, they all have sudden instant medical knowledge ‘ oh well depression doesn’t exist, it’ s all in your head’.

What these people are doing is undermining the right of a person to live and manage their illness in their way. They are refusing to acknowledge the validity of another persons reality, the validity of another individuals choices.  They are deciding once again, that we must all conform to an invisible, and, ever shifting standard of ‘normal’.

This post isn’t particularly ‘feminist’. Mental illness affects anyone regardless of age, sex, gender, race, creed, social standing- mental illness is fairly non discriminatory. It’s more of a note, to myself and others, to remember not to remove the autonomy of others, and to remember that we are all different, we all struggle in our own ways, and we all deserve to have our realities recognized and validated, regardless of the state of our mental health.