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Paedophilia/Hebephilia – It’s All About Consent

boy hugging knees girl hugging kneesThe recent Operation Yewtree Savile cases and the convictions of ‘It’s a Knockout’ presenter Stuart Hall, children’s TV presenter and artist Rolf Harris have ensured that paedophilia is and will remain front page news. There is now talk that the ideology the PIE (Paedophile Information Exchange) organisation (which enjoyed popularity and a surprising degree of respect the 1970s) may be due a renaissance in a particularly sexist way.

Hebephilia, or sexual attraction to early pubescent children aged 11-14, is another word which is being increasingly used. It is a benign word, which denotes a passive sexual attraction rather than the active progression of those sexual attractions. Paedophilia denotes attraction to children and young adolescents but legally means sexual activity those under the legal age of consent of 16.

It seems to me that there is one thing missing in all these conversations, and that is the issue of consent. Consent is something I have blogged about before, and I will keep banging on about it.  Here is my summary/definition of informed, enthusiastic consent (skip if you already know all about this, although I would suggest reading anyway):

INFORMED ENTHUSIASTIC CONSENT (aka Informed Consent)

This is the primary consideration from which all else follows in sexual activity.  This precludes those who are unable, for whatever reason, to give informed consent.  Children cannot give informed consent.  Animals cannot give informed consent.  Trafficked slaves forced into sex work (economically based rape, to give it a more honest title) cannot give consent.  Anyone under any form of external duress directly related to the situation cannot give informed consent; for example putting pressure via emotional or physical violence disempowers your partner and causes duress.  Abuse of a position of power (college professor and student or boss and employee) by the consentee removes the ability of the consenter to give informed consent.

Informed consent means having all the information one feels is necessary to oneself in order to give informed consent to a sexual activity.  This means knowing all the information which may exist which may cause harm to the consenter if they knew the same and which would alter their decision to give consent – such as whether the potential sexual partner has a sexually transmitted disease or a partner with whom they do not have an open relationship.  The decision whether to consent to sexual activity is then made with all the necessary facts available.

Some people give informed consent if they know a partner is not in an open relationship and will be cheating on someone or if they are the employee, for two examples. There is no universal moral rule which will apply in all situations. A power disparity in a relationship such as boss/employee does not necessarily preclude a relationship, but the imbalance exists and therefore the issue of informed consent is even more explicitly required to be given by all parties. The person in the position of power always has the higher level of responsibility in the situation.

Informed consent means the ability to give the same – if a person is very intoxicated on whatever substance they cannot give informed consent. Remember, too, that intoxication will affect your judgement so you may not be able to understand that informed consent hasn’t been given. If you feel intoxicated or in any way unsure of your judgement, do not have sex. That is the only way to avoid becoming a rapist.

Think of it this way – if you wouldn’t drive a car because you are too intoxicated, why would you trust yourself to be aware and understand informed consent? In the same way you wouldn’t drink and drive, don’t drink and rape.

Being able to give informed consent means knowing your own sexuality, what you are comfortable with and feeling you are in a safe environment.  It does not describe the actual physical activity to which that consent is given. No can be said during sexual activity too; what starts as one type of sexual activity can develop into a different activity and saying yes once is not a blanket consent. Make sure you have informed, enthusiastic consent for all. Again, if in doubt, stop what you are doing and check!

Most importantly, the only way informed consent can be given is if sex education is given from as soon as children are old enough to ask question, in an age-appropriate fashion of course.  After all, how can a person give or deny consent if they don’t know what they are or are not consenting to, and the implications of the same?  Informed consent requires information; the clue is in the title!

Informed consent is the ability to say “yes”, to say “no”, and to say “maybe, but I want to know more first before I can decide” and to know that that decision will be respected and adhered to. Informed enthusiastic consent is very sexy, you know.

END OF DEFINITION

It is clear that if we are to live in a world where abuse does not exist, empowerment of informed consent must be clearly understood and put into practice by all sexually active human beings. Children are not able to give informed enthusiastic consent. The power dynamics of a hebephiliac-based relationship is far too skewed. It becomes paedophilia, and therefore lacking in consent and illegal. Rightly so.

Paedophilia exists, and there is myriad evidence showing the harm it does to the child for many many years. However, not all paedophiles will act on their desires, as this recent Upworthy post detailed.

He is controlling his desire. He is aware of consent. He is understanding of the damage lack of consent and abuse of the power dynamic does. When articles such as the Telegraph one I linked to above talk about paedophilia and hebephilia, the lack of victim-survivor testimony and of discussion of informed consent is telling. It is the powerful who are maintaining the dialogue.

Sexual attractions are vast and varied. We all have desires that we would rather not admit to, although for the majority of us they are not so extreme and we would never consider acting on them in real life. We have free will and a responsibility towards our fellow human beings, and it is upon these that the knowledge and enaction of consent is based.

The teaching of informed enthusiastic updating consent to everyone will, I believe, go a long way to addressing the problems of paedophilia and hebephilia. A person cannot control the sexual attractions they have. What they can, and must, control is whether they act on them.

What Price Justice, Indeed?

Money = 'Justice'.

The price of justice is to have no justice at all.

The recent report from the Trades Union Congress, entitled “What Price Justice?” makes sobering reading for those who are already suffering under the current government. Rights enjoyed with regard to access to a Tribunal should workers receive unfair treatment at the hands of their employer no longer exist. The introduction of a fee-scale means that regardless of the veracity of the case to be presented, many cannot access the justice they deserve. This justice is essential in creating and maintaining a fair and equitable workplace for all.

As stated in Pay & Benefits Magazine online*, women seeking justice on sexual discrimination cases has dropped by 80% in a comparable period from January to March 2013 to this year’s figure. Those pursuing justice on race discrimination or homophobic discrimination has dropped by 60% in the same time period. Are we to believe that all of a sudden such discrimination no longer occurs?

The cost of bringing a case, such as claiming unpaid holiday payment or below-minimum-wage payment, to the Tribunal may now cost more than any benefit that might be achieved, and this is affecting the low-waged in particular who statistically will be mainly women and minority workers. The fee remittance system has only helped 24%* of Claimants, denying access to justice to many.

Legal aid is only available for Tribunal cases which are based on discrimination and the reforms to the legal aid system over the last 15 years through successive governments makes accessing the aid very difficult, especially for low-waged workers who may have to pay large travel costs simply to access a solicitor who holds a Legal Aid Agency (LAA – formerly Legal Services Commission) franchise.

From my experience working for a solicitor whose legal aid franchise was removed on the grounds that the firm was too small in number of employees to be granted a franchise, I know there has to be a better than 60% chance of winning the case before the LAA will grant the public funding to the firm to represent you. Seldom will an Employment Tribunal matter be envisioned as a higher than 60% chance of success due to the nature of the complaints being made. The lack of witnesses will affect any cases chance of success, most strongly in cases of discrimination where often you will find witnesses fearful of coming forward.

Unions should and do provide help to all members seeking to make claims, and have approved legal firms through which they work. They may help with funding when legal aid is unavailable. However, this does not address the costs issues which in most cases must be borne by the Claimant.

All this, and the time limit in which to bring your case can be as little as three months from the date of dismissal, if that is part of the claim to be made. Little wonder, then, that the amount of cases being brought is drastically reducing.

Knowing your rights and being able to prove they have been violated are two different things. It seems to me that the price of justice is far too high for those who need it to pay, and that is unacceptable. If justice is not equally applicable, then it is not justice at all.

 

The full TUC report can be accessed by clicking on this link: http://www.tuc.org.uk/sites/default/files/TUC_Report_At_what_price_justice.pdf

A Citizen’s Advice Bureau Guide to Discrimination can be found here: http://www.adviceguide.org.uk/scotland/discrimination_s.htm

* http://www.payandbenefitsmagazine.co.uk/pab/article/tribunal-fees-hit-women-and-low-paid-12349941?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=Pay%20and%20Benefits%20Newsletter%2029%20July%202014%20prospects%20(1)&utm_content=

MATCHFEST 2014

WARNING: Nothing to do with Foot-the-Ball

There can’t be many feminist celebratory festivals where massive, colourful and garish hats are not only pertinent, but are almost obligatory.  Welcome to Matchwomen’s Festival 2014, where you can make and wear your own thanks to the onsite official event Milliner!  Entirely gender non-specific and wonderful to see, as adult and child alike wandered around in their really rather impressive creations.  The Match Women defied the rigid Victorian gender and class stereotypes and refused to be submissive, and this meant in sartorial presentation, as well as personality, strength, wit, decorum, and alcohol consumption.  This did not endear them to those in power or to anyone above them in status (which was pretty much everybody), as you can imagine.  And so, the tone was set for the day.  Although not with regard to alcohol consumption, and I’m fairly sure there were no actual fist-fights at this festival.

This was me for most of the day:

Cheery all day.  Promise.

I am the face you see on entering. You lucky people!

I had what I consider to be the best job of the day, greeting attendees as they arrived, ticking their names of my list, taking money from those who hadn’t paid the exorbitant fee of £4 (double what you would have paid if you pre-booked, free for children), and generally having a right old laugh.  Attendees came from all over the place, including two from Turkey who had found out about the event through the International Feminist Network.  I even got recognised by one of the speakers, Sukhwant Dhaliwal, although neither of us could l work out why she knew my name…  I am going to assume it is because of my fabulousness.

The talks were through the doors right opposite me, and organiser Louise Raw (author of Striking A Light! The Bryant and May Matchwomen and their Place in History- yes I own it and yes OF COURSE I got her to sign it!) made sure I attended at least half.  I do love me a good socialise with like-minded folk, so being on the door and talking 20 to the dozen to everyone was fine by me.  She is now aware that this will be an annual event and I will be on the door for each one.  She may be unaware that she has no choice in the matter, though.

After briefly helping set up (I stuck bits of paper to a board with pins, put some leaflets on tables and mooched a bit) people began arriving and my job of “not scaring people away and not talking TOO much” began.  I could hear the words of the song especially written for the Festival by Tina McEvitt through the door, and the tone was set.  Fun, knowledge, discussion, debate and global enlightenment was the order of the day!

There were three people on what I like to call the ‘menu of delights’ that made me internally squee with pleasure, for I had heard of them and followed two of them on twitter (which would later lead to a pants-squirmingly embarrassing incident, in my eyes anyway).  Kate Hardie (former actor, now writer and director), Caroline Criado-Perez (activist and writer, led the successful campaign to have non-royal women featured on British bank notes) and Laurie Penny (author, journalist, activist).  Those were my definites, but the smorgasboard of choice proved hard to narrow down, so I ended up flitting hither and thither, relieved by Phil Prestianni at regular intervals (oi, dirty people, he was was co-doorstewarding with me).

I had intended to interview Diana Johnson MP for an article for Jump! Magazine, but it was not to be as she was door-stopped by the BBC as she came in.  Apparently her day job had something happening; well she is Shadow Minister for Crime & Security and I do believe a famous person had been jailed the day before for getting a bit handy with underage girls.  I did manage to catch her talk on the legacy of the Match Women and her role in winning the parliamentary debate to recognise this.  The Match Women inspired Union action from 1888, including the Dockworker’s strike of the following year, which history tends to ignore.  What a shock eh?  The Dockworkers at the time acknowledged it, but now you have to fight to get the recognition they deserve!

A hero of our times - Eam Rin

Eam Rin, Cambodian Garment Worker and Unionist. Secretary of the C.CAWDU.

As people arrived I grew more gregarious and teasing, but according to Louise people were reporting that I was sweet and funny, so I think I got away with it.  Apart from big-upping working class women, unions, the Match Women in particular and all women in general, we were to have been privileged to hear from Eam Rin, Cambodian trade unionist on the frontline.  Politics stepped in, as it is wont to do, and her visa was denied two days before the big day.  Iona Kelly, from Labour Behind The Label, stepped in, and a very interesting, enlightening and disturbing discussion took place.  What we wear comes at the price of death, disability and blood in more ways than we realise.

Often one speaker would lead into another, and feed off what had been said.  Intersectionality, global solidarity and understanding, and occasional heated disagreement arose, but never disrespectful and always inspiring.  That seemed to me to be the enduring gift of the day; to educate and to inspire.

By the end of the day, I had harrassed as many incomers as I though would arrive, but then more speakers turned up.  I got tongue-tied – Kate Hardie, I know her off the telly!  Laurie Penny – I know her off the twitter and guardian!  Kate Hardie I ended up having long discussions with, about writing, feminism, our learning curves into our current politicial statuses and so on.  Laurie Penny I called PennyRed as she entered.  That is her twitter account handle.  I am embarrassed to this very moment.  She did not mind at all.

Funny and disturbing.  And that's not a description of me!

Kate Hardie and Louise Raw discuss the film “Shoot Me!” with the rapt audience.

Ms Hardie’s film “Shoot Me!” was a funny and fascinating look at image, and photography of women, in particular the experiences of female actors for whom image is important in roles they play, but when being photographed themselves the experience can be painful.  I regret being unable to tell Ms Hardie how shocking I found the experience depicted; the mental violence and emotional abusiveness of the photographer and studio was totally unexpected.  Maybe she’ll read this… one can hope!

By then end of the day I was physically flat-lining (damn you, disabled body!) but mentally could not have been more uplifted.  Laurie Penny was our last speaker, and the group had developed into a friendly supportive discussion between friends.  It was a personal talk, which resonated strongly with every single person there.  Yes, of course I asked a question.  I even gave a bit of advice to a nervous attendee within the context of the discussion, for which she thanked me afterwards!  It wasn’t unasked for or unwarranted, don’t fret dear reader.  I promise you it was contextually appropriate.

The final speaker of the day.

Laurie Penny and Louise Raw – more of a conversation between many new friends than a debate.

I don’t think I have ever been to a symposium where such a discussion has happened before, and all credit must go to the support provided by NUT who provided the venue, and the organiser Louise and her team for creating the atmosphere through inspired choice of speakers and events throughout the day.  All children present had also seemed to enjoy the day, especially the colouring competition, but had left by this time as 11 am to 9 pm is a VERY long day.  I for one had a sense of optimism about the future – not only in recognition and solidarity with those who attended this fantastic event, but also in concrete steps I could take in the move towards intersectional equality worldwide.

I did not join those who went to the pub after (damn you, disabled body!) but it felt like I had been socialising with friends-I-just-met all day.  This MUST be an annual event!  It happened last year, and I am gutted to have missed it as Tony Benn gave a talk and Bob Crow attended (fingers crossed for this year’s speakers and attendees.  Lawks I hope I don’t regret that joke!), so Louise is on notice – this must happen again and I must steward.

Please?!

And when it does, you must come along.  I shall leave you with some fairly fuzzy photos to tempt you (my camera doesn’t like dim light at a distance, and I was stewarding a lot of the day).  I neither confirm nor deny now also owning a book signed by Laurie Penny as a result of the joyous day.  (CONFIRMCONFIRMCONFIRM!!! femicrush moment.  Moving on…)  So come along.  You’ll love it.  I promise!

Matchwomen's Festival 2014

Matchwomen’s Festival 2014

I bought books from Andrea.  How could I not?

I bought books from Andrea. How could I not?

1880s Bryant & May Factory Workers

1880s Bryant & May Factory Workers.

It was a long, dirty, dangerous job.  Life expectancy much reduced.

It was a long, dirty, dangerous job. Life expectancy much reduced.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ciaran Walsh, RAdical Historian & SToryteller, listens to the Grunwick to Gate Gourmet presentation.

Ciaran Walsh – Radical Historian & Storyteller, listens to the Grunwick to Gate Gourmet presentation.

The Matchwomen - heroes and here we celebrate them.

The Matchwomen – heroes and here we celebrate them.

 

 

 

 

 

 

 

 

 

 

Do come next year, you hear?

The benefits of social housing

I am more than fed up to the back teeth (not yet wisdom, that comes from within) with the media and government constantly rambling on about the housing crisis and benefit claimants, as if the two are mutually exclusive and if they are not very nuanced topics which deserve detailed consideration.

Benefit claimants cannot afford to pay private market rents. More than that, many working people cannot afford to pay private market rents either. So they are left with the options of:
(a) staying with family and/or friends if they have any willing and/or able to help them out.

(b) sharing with many other people in homes which are not suitable for them due to size.

(c) applying for the rapidly-reducing number of social housing properties (formerly council houses, although due to cuts many boroughs are now giving over control of these properties to arms-length management organisations or not-for-profit social housing management agencies).

(d) being homeless.

When people pay private rent, they tend to pay a very high rate to cover the mortgage of the landlord, or if the landlord owns outright, to pay what the landlord considers a ‘fair rent’. This means generally an amount that is the market-rent equivalent to like properties in the area. Rent on properties will therefore vary massively depending upon where you are in the country, in your county, in your town or even in your local borough.

Council housing stock has been sold off under the Right to Buy scheme for many years now, continued and promoted by various Conservative and Labour governments. The sold-off stock has not been replaced, and the crisis in availability is not new. It is, in my opinion, now beyond critical levels.

Where I live, in one of the poorest boroughs in the country, there are no council houses.  We are all social housing.  I am in a property run by an ALMO, which is tied to providing council housing equivalent rents and rights for tenants.  I am very lucky.  My disabilities put me high on the waiting list and my experience working in housing law (legal aid funded work since stopped but that’s a different blog…) gives me a slightly better-than-most understanding of the system.  I repeat, though, I was VERY lucky.

The introduction of the bedroom tax means that people who once thought they had security of tenure now face eviction should their children have the temerity to actually want to move out at any point (not that they can now afford to). This security is seldom available in our culture of Assured Shorthold Tenancy Agreements, the private housing rental agreement which means the tenant only has a six-month tenancy and there need be no grounds for eviction at the end of this period.

It’s a landlord’s market, and don’t we know it. But there is so much more to housing, to homes, than rent. Social housing provides a security of tenure which means people can afford their home, can afford to take pride in it, can afford to remain in a locality for some time and can put down roots into a community. The long-term benefits of this should be plain to see for everyone, but apparently they aren’t.

Being able to settle in a community, to put down roots, means you can commit to the locality. You can volunteer, work, do part-time jobs, your children are safe in schools they will attend and be familiar with for their entire lives, your family may be nearby and you will be able to develop long-standing relationships with your neighbours. You will be able to develop a relationship with your environment; being a part of your community is essential to developing a responsibility towards it. If you are only ever likely to be somewhere for a short period of time, why on earth would you put down roots?

Roots, when constantly uprooted and moved, kill the plant. So too, the love of community and relationship with people around you dies.

Very few people can afford to buy their own homes. Very few people can afford to rent long-term. The housing crisis will only be exacerbated by continuing rises in rent, the idea that ‘market rent’ is fair – a mistake made by those who believe fair only relates to those charging rent, not those paying it.  Social housing used to provide security and safety for those in the lower wage bracket and those caught in the unemployment trap. It also provided a means of escape for those in abusive homes. Not any longer.

We need to invest in social housing. By doing so, we are investing in our communities. Surely I am not the only person who sees this connection?

A Dirty Phone Call Is No Laughing Matter

This afternoon I answered the phone at work with the usual “Good afternoon, [NAME OF FIRM]”.  There followed the distinct, unmistakable sound of a man masturbating down the phone.  I wasn’t sure, I decided to waste their phone bill, put the phone down on my desk, second-guessed and questioned my hearing, listened again, realised my first assumption was correct, and hung up.  I say unmistakable now, but I did question myself.  I was and am still, 5 hours later, shocked.

I’ve never been on the receiving end of a dirty phone call before.  I’ve experienced plenty of other types of sexual/bodily harassment as has almost every other woman (if not all) but never a dirty phone call.  Since writing that blog I’ve remembered this further invasive experience:

The Acupuncturist
I was undergoing electro-acupuncture for back pain quite a lot of years ago.  The acupuncturist was using needles with crocodile clips attached through which the current was passed.  He dropped one of the crocodile clips and decided to retrieve it from its lodging place in the dip of my buttocks, in the centre, by crooking his finger and fishing it out.  This meant his finger touched and hooked almost into my bum.  Sounds funny, doesn’t it?  I am sure a couple of you smiled, and I don’t blame you for it.  We are conditioned to find such things funny in so many ways.

I didn’t find it funny, I was shocked and immediately wanted to get straight out of there, but as I was almost naked and alone I didn’t feel able to.  What makes it even funnier (in a not-at-all sort of way) is that the crocodile clip was on wires; had to be, to conduct the electricity through.  He could have simply pulled the wires to pick the clip up, with no touching necessary.

I will never have acupuncture again.  I left the shop numb and shaking, and promptly burst in tears.  Luckily I bumped into a person I knew who made sure I was okay and whom I managed to persuade not to go in the shop and punch the acupuncturist through to next week.  He is a big bloke so could easily have done it, and I can’t say I wasn’t tempted, but that is not my way.  I needed support and comfort, not hypermasculine violence which would just leave me feeling worse for having been the unwitting cause of it.

I got my money back for the remaining session I had booked, but the shop refused to admit that there was anything at all wrong with the elderly gentleman’s conduct.  No action was ever taken.  As I know, he still works there and gives treatments.  I walk past the shop every time I leave work (for those who know me personally, it’s not the one below my office).

Back to the dirty phone call.  I had identified where I worked when I answered the phone.  The person knew where I was, and I was alone in the office all day (a very rare occurrence).  What about when I went home?  Might they try to find the office?  Is it possible they could turn up? If so, what then…?

Unlikely, I am sure, but the fact is I didn’t know that for sure.  It could happen.  It was extremely likely it would be simply a one-off incident, but there was no way I could possibly know.

I posted a status message and jokes were made.  I didn’t find them funny.  I appreciate the people were probably just trying to cheer me up, but what it made me feel was belittled and stupid for being so shocked and upset.  It’s not funny.  Read #yesallwomen on twitter, if you have even a modicum of disbelief about the world we live in.

I spent the afternoon trying not to worry, but when I left work I found myself looking all around me, suspicious of any man who came near me.  I work in a town centre, there were a lot of people around me.  A lot of men, of all ages.  I was suspicious of all of them.  Again, it is very unlikely anything would happen, but again, I did not know that for sure.  There was no way I could know.  Not all men, true, but how am I to pick out the ones that are bad from the ones that aren’t?

I am normally quite street-aware anyway, but was hyper-vigilant tonight.  Even so, I still felt panicky, walked faster, was jumpy and managed to stop the panic attack before it started.  I stood at the bus stop, wary of any male passenger getting on the bus, thinking to myself “he came up behind me, he’s running for the bus, why?  Is he following me?”  It may be paranoia but then again it may not be, stalking happens.  It’s extremely unlikely and statistically I am safe, but  I repeat again, I did not know that for sure.

I did not feel truly safe until I walked in my front door.  Now with the passage of time, with a night’s sleep, and distance, I will feel safe again.  The world is locked out and I am now in my cocoon, my safe place, my warm and calming home.

All that from one dirty phone call.  I am angry now, and will keep on with #yesallwomen and confronting, blogging, fighting any way I can.

And that, dear reader, is why it is no laughing matter.

CLL – My Latest Diagnosis

Those of you who know me well know I seem to collect chronic conditions.  Thinking back, they seem to occur in the first two years of each decade, so imagine my excited anticipation for when I turn 50!

In order:
Aged 12 – formally diagnosed with epilepsy, now completely controlled by medication (since I was 17).
Aged 21 – formally diagnosed with PCOS.
Aged 31 – formally diagnosed with spinal osteoarthritis, thusly painkillers by the many and degeneration (although slow, thankfully).
Aged 32 and a bit – formally diagnosed with Jessner’s Lymphocytic Infiltrate – have a google.  Most common in men in their late 60s.  Faded after 3 years.
Aged 41 and a lot – formally diagnosed with CLL (although doctors vary between “I wouldn’t tell you this if I wasn’t sure” and “probably CLL”).

CLL has left me ambivalent.  As a writer, I have an irresistible urge to write about it, to get my thoughts out, marshall them and try to make sense of it.  I want to publish because I feel my story may help others.  The stories of others help me, so if one person can relate and feel uplifted or enlightened or less alone in the confusion, that’s why I did it.  Not to hurt or upset anyone, although I know I am loved and people will feel pain.  I am sorry for that.  Please know that there is no need and I am humbled and gifted to be so loved.

So what is CLL?  I’ll break it down:

C – Chronic.  This means it is a lifelong condition which will not go away, be successfully removed by medication, or that I will recover.  I will feel better and/or worse as time goes by.  All chronic conditions can be managed to a varying degree of success, and there are a wide variety of such conditions.  They are not diseases.
L – Lymphocytic (ooh another one!).  Just means contained within the lymphatic system.  It is the location of the chronic condition.  Not connected, apparently, to the JLI – I asked.
L – Leukaemia.  This is a description of the particular type of cancer cell that the bone marrow in my body is very, very slowly birthing.  Note the very, very slowly.  That is extremely important.

It’s that last word isn’t it?  When the very caring and practical GP told me, I felt a hot and cold flush of pins and needles move up and down my body, my eyes widened and panic flooded through.  I’m guessing that word will do it to you – leukaemia.  Swiftly followed by the word ‘cancer’.  But what does ‘cancer’ actually mean?  It means deformation of cells in the body which multiply to prevent the parts of the body in which they exist from working properly, slowly killing them.  My bone marrow is producing deformed white blood cells which will slowly travel down the conduits of my arteries and veins and collect in the junctions of my lymph glands.

Not that ‘slowly’ again.  Still very important.

I am completely asymptomatic.  CLL is only ever diagnosed when blood is being tested for something else and the higher white platelet count is noticed.  A couple of further blood tests to check it wasn’t an anomaly whilst fighting infection and a look down a microscope to determine the shape of the cells, and CLL is diagnosed.  It’s most common in those over 55 (again with the bucking the trend, I’m such a rebel!) so it is seldom deadly.  People tend to die of old age before actually needing treatment.  You can go 20 or more years without ever needing to be treated through radiation, chemotherapy, bone marrow transplant, or whatever course is chosen.

I am at the stage where I have a slightly elevated count.  Very very slightly elevated.  All I need is to be monitored by the local NHS (I would be nowhere without the NHS – I honestly believe given my collection of chronic conditions and various medications I would not be able to afford private treatment or insurance, so may well be dead).  Haematology and regular vampire-sucking of blood and that is it.  Nothing else.  To be honest, my arthritis is more of a pain (HAH! See what I did there?) than the CLL.

However, the fact remains that I have cancer.  I have leukaemia.  A very slow-developing type, which will not affect me for many years, probably.  I am a healthy person, which is positive.  Chronic conditions do not mean a person is unhealthy, it’s important to remember that.  I have conditions which affect my lifestyle, my abilities, and my way of being, but I do not have acute illnesses.  Healthy is relative.  I am healthy.  Just to be sure you get what I’m saying here.

But I have cancer, and I can’t pretend that the idea doesn’t scare me.  I believed before this diagnosis that statistics aren’t helpful, and that belief is set in concrete now.  Every individual reacts differently to treatment, and there are so many different types of cancer out there, each reacting and acting in a variety of ways particular to the person who has that specific type of cancer.

CLL is, although I cannot say or write it without a wry raise of one eyebrow (I’m doing it now as I type), the best form of cancer it is possible to get.  Yes, I did really just type that sentence.  It is the most likely to go into remission, and has the longest gestation (?) period and can be very successfully treated.  But that’s statistics again, and they apply in broad strokes, giving no real indication as to the individual experience.  Good statistics give hope, bad statistics give terror, and neither reflects the reality of the person being treated so helpful are they, really?

I know I will need treating one day.  I am young to be diagnosed with CLL, so it is inevitable I will develop the cancer and need some form of treatment.  Rather than wondering if I will one day have cancer, and what form if I do, I know I will and how it will show itself.  That is, in my eyes, a great gift and an advantage.  I have time to get my head around the idea, to understand testimonials and empathise with others, to learn and perceive and come to terms.  I have deformed white platelets in my body, being born from my bone marrow, as I type, but I only know by accidental diagnosis.  I choose to believe I am lucky.  It is a choice, that my depression (diagnosed around mid-20s, recurrent not cyclical) and CBT/counselling/psychotherapy over the years has helped me to choose.  I practice, and I need it at the moment.

Because I am scared.  I am terrified.  All the reading in the world, all the stories in the world, all the hope and fear, will not truly allow me to know what will happen.  Will there be pain? Probably.  Will I die? Very unlikely.  Will it recur once it’s occurred once?  Possibly.

Then there are all the other questions, like will I have to stop working (I love my job), and when will it happen (impossible to know, but always on my mind) and so many others that pop up and disappear and have no real answer.  I like answers.  I don’t have any and nor does anyone else.

I am scheduled for my first haematology visit this month.  Three months after diagnosis, which is a good indication of how not worried the medical establishment are about this.  I’m hanging on to that.  I will question and probably prove to be a pain in the bum about this, as I don’t believe in simply saying yes/no and blindly following medical experts.  But they are the experts and I do trust them, just not implicitly.

I need to write this.  I need to share this.  I cannot have the same telephone conversation with the many people with whom I want to share this with, and who do not want to know but I need them to.  My blog will hopefully tell them, so I will re-share as much as possible.  I will react occasionally because it is always, always, in the back of my mind now.  It is a part of me.  I hope you understand and forgive me the pain it may cause.  It was unintended.

For more information try this link: http://www.ukcllforum.org.uk/about_cll.php

Thank you for reading this, if you did.  Please share it.  There are many who may find it helpful.  I hope you did. And if you remember only one thing, remember – “very, very slowly”.

Yours in love, and fear, and hope, and everything in between.
Big hugs! X

Rain Brown and the Seven Harpies

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tinapj:

A wonderful fairy tale from knockback.co.uk – read and share, lucky people!

Originally posted on KnockBack:

A Slightly Feminist Fairytale by Bisha K. Ali
Illustrated by Sam Golin

nce upon a time, in the height of summer, when the Sun baked the ground into unyielding hardness and the people whispered in the dark for water, a Queen sat in her palace war rooms, poring over defence tactics with her husband, The King.

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What is a romantic partner?

I’ve been thinking about this, ever since I found out my incredibly scrumptious niece who is all of 8 had declared she had a boyfriend, but that he didn’t want to tell anyone because … well, it doesn’t matter. Naturally, this irked me somewhat so my immediate reaction (after wanting to get all medieval on his bottom, which is inappropriate at his age and wrong at any age) was to say if he doesn’t want to tell anyone he is not a boyfriend.

Then I started to wonder. What is a boyfriend? What is a girlfriend? What is a partner? How can one explain the role, the idea, to a youngster in order to help them develop healthy relationships when they get older, within whatever sexuality they are?

I have a lot of children in my life and I worry about this a lot. The experiences of those who are developing and growing in the world now are a lot different to mine. The internet has changed the world vista, extremes of behaviour and sex are more readily accessible and imitated, and pressures on the youth seem so much more oppressive than I remember mine being. It’s odd, but it seems to me that whilst there is a lot more variety, the boxes in which we are to be put are a lot narrower and restrictive. A curious dichotomy…

Back to my children. What advice would I give? How could I protect them yet let them grow into the wonderful, strong, capable people I know they will be? How can I support their parents and caregivers in doing this? I am the ‘dodgy’ Aunt, the ‘oddmother’, the older friend with influence, and I love my children fiercely. I do have an effect on them, and I take that seriously (most of the time). Sometimes I am a total fool and idiot, which is great. Isn’t that why you all had children, so I could be one too?

Back to advice. List format is great, so I’ll use it:

  1. A partner will always admit that they are in a relationship with you, and will be proud of the fact.
  2. A partner will be supportive of your decisions, but not afraid to explain why they think you might be making a mistake. If you disagree, they will support you anyway.
  3. A partner will NEVER hit you.
  4. A partner will NEVER make you feel bad about yourself.
  5. A partner will NEVER stop you seeing your family and friends, for any reason.
  6. A partner will complement your personality and character, whether that is by being opposite or the same or a combination of both.
  7. A partner will make you feel you are the best person you want to be and can be.
  8. A relationship that is right may take work, but it will never seem like work.
  9. A partner is someone you can trust, and who trusts you.
  10. A partner is someone you can make mistakes with and disagree with, and that doesn’t affect how you feel about them.
  11. A partner is someone who makes you happy.
  12. It is better to be single and happy than with someone and unhappy.

 

So that’s my list. Of course it can be vice versa too – they should treat any partner they have with the same respect and care. Any points you’d want to add? What do you think? Have I missed anything?

I love my children. If their partner doesn’t love them as much as I do, then they simply aren’t good enough!

I’m a Paid Columnist – Yes, Really!

I try to post at least one or two blogs a month, so you, oh-beloved-reader-mine©, can have something to either argue with, laugh at or look incredulously toward with your morning coffee’n’muffin.  However, I have also started to write for the wonderful Pilot TV News as an opinion columnist (which fills my heart with all the squee) so thought you might like a butcher’s* at my scribblings thus far.

If you like, please repost the articles from the Pilot TV News site.  I am providing the full links to make this easier to cut and paste, as well as a click through.  Thank you very much, kind-reader.

I am proud to present (in date order of publication) – MY COLUMNS:

This first one deals with the use of the word ‘revolution’; what does it mean?  What format could or should a revolution take?  Do we need one?  (spoiler: I say yes): http://pilottvnews.com/2013/11/talkin-bout-revolution/

It seems obvious, really, and intersectional identity feminism is not a new idea.  I have been learning about it and studying proponents such as Angela Davies since 1990, and it certainly existed as a concept and reality in feminism before I knew the word.  Somehow, though, it still seems to be new to those who do not understand the fundamental ideals of feminist thought: http://pilottvnews.com/2013/11/intersection-feminism-equality/

Should you, or anyone, vote?  Is it really possible to have a democratic process when there is no equality of candidate, in number, parties represented and amount of people represented by a single MP?  What do you think? http://pilottvnews.com/2013/11/vote-vote/

Twitter, and other social media, is rife with violent, sexually degrading and humiliating language aimed at any woman who puts her head above the parapet and has a publicly expressed opinion.  I’ve been lucky so far…: http://pilottvnews.com/2013/12/culture-violence-women-victim-blaming-cyber-violence-rape-culture/

The government is failing, the measures are not working and poverty is on the rise: http://pilottvnews.com/2013/12/austerity-income-gap-rich-poor-increasing/

An arbitrary age, bearing no relation to the form of consent to be given, the maturity of teenager, the education and understanding they may have and the relationships they may embark on.  Time for a re-think on the age of consent and sex education for all, methink(s): http://pilottvnews.com/2013/12/rethinking-age-of-consent/

Islamaphobia – the latest in a long line of mistaking religious belief for culture/skin-colour.  Argue with an ideology, don’t demonise a people based on a racist assumption because of it: http://pilottvnews.com/2014/01/anti-religious-racism/

Yes, a debate on immigration is needed.  However, unless we are given facts rather than force-fed propaganda, and unless it is discussed in the context of economy, family and refugee need, we can never have a real debate or real solution: http://pilottvnews.com/2014/01/immigration-real-problem/

Scare-mongering headlines of ‘gendercide’ – again the real issues are ignored in an attempt to govern what women do with their bodies.  Most irksome (I write, understating dramatically): http://pilottvnews.com/2014/01/sex-selective-abortion-intersectional-feminist-perspective/

Misunderstanding, misrepresentation or ignorance – whatever the cause, racism is the result.  It is privilege to believe that such an image does not at the very least subconsciously promote and perpetuate racist inequality: http://pilottvnews.com/2014/01/racist-chair/

Who is/are Anonymous? What are they for?  What do they do?  Most importantly, who are they responsible for or answerable to?  Who watches the watchers? http://pilottvnews.com/2014/02/anonymous-vigilante-revenge-justice/

The war on drugs is killing people.  It has failed, repeatedly.  Moreover, it has been fought by hypocrites and ignored scientific evidence and evidentiary experience.  Time for a change: http://pilottvnews.com/2014/04/who-really-benefits-failing-war-on-drugs/

Be warned, there is rumour of a v-log being created for Pilot TV News, upon which I may feature in all my glorious technicolour reality!

*butcher’s hook = look (for the non-cockney amongst you)

PILOT TV NEWS–Our content is free under the Creative Commons Attribution-Non-Commercial-No-Derivative 3.0 license.

Is this the thought police?

After two weeks of heavy public pressure, including boycotts of Mozilla Firefox by OK Cupid and many LGBTQ activists, former CEO Brendan Eich has handed in his resignation. He resigned after public pressure and campaigns, for a point of view he held in private, which had not been proven to have affected his work. He had donated thousands of dollars to support Proposition 8, the legal ruling made in 2008 in California which rescinded same-sex marriage rights, and to support political candidates who supported the Proposition.

I am firmly against Mr Eich’s point of view. I am a feminist, an equalist, through to the bone and do not in any way agree with his expressed viewpoint. I personally would not want to work with or for anyone who held anti-equality views. However, I am disturbed by the fact Mr Eich was put into a position where he was forced to resign because of a personally-held point of view.

I was fired from a job once, because of my political views. It was my first job after leaving university and having completed a secretarial course, and ended almost a year of unemployment. My contract was not renewed after the probationary period. I worked for two bosses (a theme which seems to have carried on throughout my career) and the female underboss took me out to lunch on the day I was told. It was she who told me the overboss had made his decision because I was left-wing and outspoken as a woman. This I now find ironic as I was not particularly outspoken then. I couldn’t actually work out how the overboss had discerned my political leanings as I didn’t define myself as being of any particular leaning. He was right-wing, the owner of the actual business was a Conservative MP, but the job did not entail any political or opinion-giving tasks. But my job was gone, and there was nothing I could do about it. I was fired because I did not politically align with my boss.

What is the difference between this and Mr Eich being forced to resign for a privately-held political viewpoint? If he had shown bias and discrimination in the workplace, in his job, in any way through Mozilla Firefox as a brand and product, then yes I could understand the position. He hadn’t done this though. It may have been possible that his view would change, and his statement certainly showed an interest in doing so.  Only time would have told, but this now is time we will not have to see whether he would have changed his opinions or whether he would have shown discriminatory behaviour.

I am concerned about this action. I was concerned with the proposed boycott and suggestion we switch from Firefox to Google Chrome, not least because Google pays an awful lot of money to Firefox to be the default server, so it seemed to me to be counterproductive.  Such a boycott would damage the many employees of the company.

Mostly, though, I am concerned at the idea that a person can be removed from their job because they hold a particular personal viewpoint. There is no evidence at all, that I can find, that Mr Eich’s views had ever affected his job. Mozilla has an excellent anti-discrimination policy, but Mr Eich had not actually shown any discrimination against anyone at the point of holding the job. There are only those donations in 2008. In fact, he had been working for Mozilla as Chief Technical Officer since 2005 and I cannot find any report of him having been discriminatory towards anyone at the company. If he had been, would it not have been publicised? I am bearing in mind that lack of evidence is not proof of lack of discrimination, but one can only act on what one knows.

I have been reading a lot about this issue, because it is one which concerns me. A rather excellent article supporting Mr Eich’s resignation was posted on Slate yesterday which agrees with the forced resignation of Mr Eich.  It seems those actually working for Mozilla were not happy with the choice of Mr Eich as CEO, and internal action was taken to remove him from the position with three Board members resigning over the majority vote appointment. He was a controversial choice from the start.

Ultimately though, if we allow a personal political view to force a person out of their job, rather than follow the legal channels and prove the person has behaved in a discriminatory manner, or allow a person to change, then aren’t we discriminating against them ourselves? I find Mr Eich’s view reprehensible, but that must be separate to my application of the principle of equality to all people. There is no evidence at all that Mr Eich had discriminated against anyone in the workplace. Shouldn’t we have given him a chance to fail, rather than just force him out? If he had discriminated in any way, then I would be all for a boycott, for forcing him out. But isn’t this a bit pre-emptive? I feel Mr Eich has been found guilty of the fact he may potentially have violated the laudable anti-discrimination policy of Firefox at some time in the future, rather than actually having done so.

Should it be proven Mr Eich discriminated against anyone, work colleague or employee, or had violated the Firefox anti-discrimination policy, then my view would change. Until then, I am very wary of any action which encourages punitive action against a personally-held political view. Mozilla prides itself on bringing together a diverse range of people. Where does the line get drawn? When does diversity stop?

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