Tuesday, 8 December 2015

My dad.

Mum and Dad on their wedding day 1957 - Kenya
This week I learnt that my Dad died. He had a virus that wasn't deemed to be life threatening, yet on his own at home, lying on his bed, he died.

I hadn't seen him for several years and the last time we'd spoken, a few days after my mum had died, we'd exchanged cross words. That was the last time we'd spoken.

I never write about my Dad because we didn't have the easiest of relationships after he left. We'd both tried but for reasons too numerous, painful and subjective to elaborate on, we became estranged from one another.

If that in some way is supposed to make his death any easier to bear, it doesn't.
The greatest misunderstanding of love is that it only exists through regular and positive contact. My parents were married for 21 year and I was 12. So from my perspective we'd been a family for 12 years before he left and my brother then  died.

He was my Dad,  just because I didn't see him after we stopped speaking in 2011, doesn't mean that I didn't love him.

I find myself now in a strange position. I'm his daughter yet I'm not even sure that I'm going to be able to go to his funeral, uninvited. I very much want to go, as any child would but I don't want to impose.
I have spoken to his shocked and devastated wife and told her how much my father loved her and their child and how sorry I am for their loss, but I did so as a polite acquaintance unable to express that this is my loss too, for fear of offending her.

The arrangements are not requiring of my input. I mention this without acrimony just a flat statement of fact. His family are far more able to arrange and detail his funeral than I am, because they know him better than I do.

This doesn't mean that I don't love him.

The pain I feel, carries with it the barbed complexity of distance and time. Both geographical and emotional distance, and length and waste of time. For 36 years after he left, I tried and failed to get close to the man I'd idolised in childhood and he tried and failed to re-frame our connection as a friendship, devoid of familial ties.

That didn't work for either of us. I didn't want to be his friend and he didn't want to be my Dad. His request when I was 14, that I call him by his first name, as that would make things easier for him, was like a slap in the face.

I'd already lost my brother and though my dad was living away from us, he was and would always be my father. His name change request caused me to stand back and evaluate everything I'd understood to be true about us.

This didn't mean that I stopped loving him.

I'm not sure what the next few days will bring, whether I'll be able to say goodbye or whether our estrangement will be the defining echo of our relationship, but if I were allowed a moment alone with him, I'd tell him what he meant to me. I'd tell him some of the words of the song that he used to play me every morning when he drove me to school, I'd thank him for the qualities he gave me that were good and I sympathise with him for the ones he gave me that weren't so good. I'd forgive him for some things and I'd tell him that I've reconciled my heart and mind on others.

You only get one father, that's scientifically inescapable.

For my part, this is also true, I never stopped loving my Dad, and I never will.

Me at 2 months 1966 - Ireland

Monday, 23 November 2015

"Out of Sight, Out of Mind" Campaign

96% of people surveyed don't believe that physical & mental health are teated equally

In October 2015 I was diagnosed as being on the Autistic Spectrum. I'm nearly 50 and my diagnosis amongst other things was an opportunity to reflect over many events in my life and see them from a different perspective.

When I explained my diagnosis to people, the reactions I got were varied and it made me wonder not for the first time that if I had told them I'd been diagnosed with a physical condition, whether they would have reacted in the same way.

However some people were very kind and people online were very supportive. Some people called me brave, which they meant kindly but as I have an over-thinking brain, I wondered if my choice carried with it an element of risk.

42% of people have received a negative response when sharing their diagnosis with others

There is definitely still a high level of stigma that walks hand in hand with anything to do with mental health and "invisible" conditions like autism, depression, anxiety and bi-polar disorder.

In the case of MS which is a physical condition, there isn't always a tangible sign of its presence, so symptoms can be misconstrued. I know when my mum was first diagnosed with dementia, she feared the stigma that revealing her condition might bring.

Culturally we need to see a sea change in attitudes so that for mum and me, my daughters and millions of others like us, we shouldn't be afraid of being who we are.

88% of people believe that everybody shares responsibility for ensuring equal treatment of people with an "invisible" condition.

I decided that I needed to address this issue. Irrespective of anyone who believes that labels are unhelpful and reductive, to me diagnosis gave me the answer to the question I've asked myself all my life, "why am I different?"

38% of people have experienced social exclusion as a result of revealing their own mental health/invisible condition or that of the person they support

The "Out of Sight, Out of Mind" campaign seeks to highlight the lack of parity of public attitudes between physical and mental health by highlighting that invisible or hidden conditions, need to be treated in exactly the same way as any other health condition.

To illustrate this I conducted a survey which was completed by 519 people. The results are detailed below with some case studies. The fact that two of the case study participants needed to remain anonymous is further evidence of how far we as a society need to go in understanding that difference is normal.

Case Study #1. Gavin Wheeler is a mechanical engineer. His five year old daughter Seren has high functioning autism.

85% of people either has or knows someone with a mental health condition

Some of my friends don't understand why I don't go out much anymore. Seren doesn't like being left with a babysitter and gets very distressed, so we just don't do it.

We also get a few funny looks when we go out for dinner. Neither of our children are great at waiting for dinner, so we always have colouring books or toy trains to keep them entertained. We tend to go to places with a quick turnaround, and get the bill as soon as the food arrives, which people don't seem to understand, but I think eating out in general would be better if restaurants catered for children better and kept waiting to a minimum. At the local wildlife park they have a buffet type service, where you pay before you eat, and it's their favourite place to eat.

Case study #2. Bruce Lawson is an open standards advocate for a web browser company. He lives in Birmingham. He has multiple sclerosis.

88% of people believe all of us are responsible for the equal treatment of people with a mental health condition

"Multiple sclerosis is a neurological disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. Some people are much worse off than I am, and have visible symptoms (wheelchairs, are bed-ridden etc). Mine is — touch wood — relatively mild. When tired, stressed, or fighting a cold (for example), I can be clumsy, because my fine motor control goes stupid. I can also slur my words or trip over air molecules, which can lead people to think I'm drunk. This is made worse by the fact that about 30% of people with MS experience difficulty swallowing, which for me means that food sometimes comes back up, requiring a hasty exit to the bathroom.

My job, however, involves lots of international travel, public speaking and networking meals. Because of stressful and tiring nature of the work, and the symptoms I get, I found it easier to be be open about my disability, so that if any clumsiness, speech problems or bathroom rushes occur, people will know why. 

Sometimes people ask questions about it, which I'm happy to answer. No-one treats me with kid gloves - which I'd hate. Perhaps the green mohawk and kickboxing gives a tougher impression than I merit (I'm a big softie folk music fan).

I'm very lucky that in the 16 years since being diagnosed, my different bosses in various organisations have been understanding, ensuring that I get the rest I need. 

A bonus to being open on social media is that I occasionally get messages from people who've been recently diagnosed (always a tumultuous and emotional time) who tell me that reading my statuses from various countries gives them encouragement: MS doesn't inevitably lead to wheelchairs, paralysis and incontinence.

And, nowadays, when I'm actually drunk, people don't give me a hard time, as they think it's the MS. Result!"

Case Study #3. Anonymous contributor who has depression and ADD.

56% of people have experienced a negative reaction when their invisible condition is revealed

"I think one of the worst aspects of having an invisible condition is that people who don’t know, will say awful things or make jokes about people with mental illnesses while I’m standing right there. I feel alienated and pressured to speak up. It’s not a good way to start a conversation about it. It usually ends up being productive conversation but I’d prefer not to have to tell people about myself in that way.

Another issue is that people forget that I have depression. I’m often told I ‘seem fine’ so they forget. When I have a new bout of it, I have to remind some people, which often ends up being emotionally exhausting for everyone. 

Other people, while well-meaning, think they can help by pointing out all the things I should be grateful for or reminding me of all the people who love me. There are others that tell me all about the treatments and cures available.  It’s hurtful when that happens because I’m aware of these things. What they’re unaware of is that treatments aren’t as magical as they’d like to think and ‘cure’ is a relative term. Being reminded of my situation makes me feel much worse. It’d be more helpful if they’d ask me what I need instead of assuming." 

Case study #4. Anonymous contributor who has depression and anxiety.

44% of people living with an invisible condition have chosen not to share their diagnosis

"When I’m asked (often in job interviews) why I’m a contractor I recite the same line, with utter conviction to the point where even I start to believe it, each time: “I once read about someone only a few years older than me who was a comms director while I was still junior. He gained his experience through contracting so that’s what I decided to do.”

But the truth is that my anxiety and depression prevent me from getting a permanent role. Actually, that’s wrong – my fear of talking about it and my experience of other people’s reactions to it prevent me from applying for permanent roles. I’m the sort of person who has needed a week off sobbing by day, having nightmares by night. If I’m on a day rate there’s a lot more flexibility about time off and if relationships get too difficult with a particular team member.
I once worked with a woman who declared to the office that “Tourette’s, ME and bi-polar disorder don’t exist, they’re just an excuse for bad behaviour”  I simply had to leave and couldn’t possibly tell her that I suffer from depression because in her eyes it’s probably just an excuse for laziness. I can simply leave with no questions being asked and no eyebrows raised when my next employer sees that I was only in that role for eight months.

I admire people who do talk about their hidden conditions – they are paving the way, ensuring that future generations have a smoother path with fewer obstacles to trip them up. I’d love to be one of those people but I’m not. I can’t afford to be." 

Case Study #5. Anonymous contributor who has autism and anxiety.

96% of people feel that society doesn't treat mental and physical health equally

"My anxiety can affect my everyday life; sometimes I’ll wake up in the morning, unable to get out of bed, frozen in place because facing the day ahead is just too much of a challenge for me to cope with. When I was at my worst, I had to come out of school for almost two years due to how quick I would be to panic, or burst into tears at just the very idea of leaving the house in general. 

I am better now. But I have my off days. And if one of these days happens to occur when I have to go to college, would I let my teacher’s know I’m absent because of that? To be honest, no, I wouldn’t. 

I have such a fear of being judged that I usually come up with some other excuse; a sudden migraine, or bad stomach problems normally.  Even if I think they’d understand on the surface, a part of me is worried, due to the stigma I’ve faced in earlier life, that they’d hear “too anxious to come in” as “wants to skive off of doing work”.

On the plus side though, I’m taking medication for my anxiety now; the side effects cause stomach problems, making me miss more college either way.
How ironic"


I'm very grateful to the case study participants for sharing their experiences with me.
Many thanks to everyone who shared my survey online and I'm hugely grateful to the 519 people who took the time to complete the survey.

43% of people if diagnosed with a mental health or invisible condition, would fear for their job security

    "Out of sight, out of mind" Campaign - Difference is normal

Friday, 20 November 2015

'The men worked hard, the women worked miracles" Q&A with Ricky Gervais

Ricky Gervais, actor, writer, director, producer, stand-up, musician, animal rights activist, and atheist is saying goodbye to gentle care worker "Derek" and hello again to David Brent. 

As he starts filming "Life on the Road" his mockumentary, which follows the middle aged, former middle manager and current urinal lozenge rep from Slough, I asked Ricky some questions.

Luckily, he agreed to answer them.

Derek as a character has been with you for several years what inspired you to tell his story now?
I always have a bit of a backlog of ideas and they all fight to be next. I guess I got confident enough to try to do something this delicate and fringe. “A fake documentary about a group of outsiders looking after loads of old people who gradually die”. It doesn’t exactly scream mainstream hit. But then again “A fake documentary about a desperate middle aged man in a paper merchant’s in Slough” doesn’t exactly jump off the page either. The honest answer is I do what I’m excited about at any given moment, put everything into it for 2 series and a special then move on to the next thing.

On Twitter you're a powerful voice in terms of animal rights activism when did you first become interested in this issue?
I’ve always been interested in the issue for as long as I can remember. Obviously the more famous you get the louder your voice becomes and the greater responsibility you have to always speak out for those without any voice at all. I’m involved with many different sides of animal activism from conservation to pet rescue but the thing I am most passionate about is animal cruelty. I’ve never understood the psychology of a person who enjoys the idea of an animal in fear or pain. It angers and depresses me in equal amounts.

Are you happier that you became well known for your work later in life?
Definitely.  I still feared fame a bit because I didn’t want to be lumped in with those people who do ANYTHING to be famous. I knew that if you became famous it had to be for something that you were proud of. I think this plan is a lot easier to maintain when you have a bit of an older head on your shoulders. You’ll still make mistakes but they won’t be as indelible as the daft things you do when you’re young and reckless and think you’re invincible.

You are in full creative control of your work but if you had to focus on only one field in the creative arts, which one would it be?

That’s a really difficult question to answer because when you create a whole show from scratch all the elements are intermixed. For example, I only started directing to make sure the writing was imagined correctly. I only started producing to have even more power and protect the directing. I love acting but it’s the icing on the cake for me. It also pays the best. Ha-ha. I guess all this means that the writing is the most important element to me. The best an idea gets is when it’s in your head. If you get the chance to protect it then it’s your job to ruin it as little as possible by making all the right decisions.

Internet trolls are a regular feature for anyone with a profile online, what do you feel is the most effective way to deal with them?

Even though I know they just want attention, sometimes I think of a comeback that is too good to waste. The trouble is even if they’re nasty little pieces of work, I usually get a glimpse of their existence and I end up feeling sorry for them. The best policy without doubt is to ignore, block, and forget about it.

From the age of eight you've been an atheist, what do you think is the biggest misconception people have about atheism?
Oh my word, there are so many. From equating it with Satanism to subtle confusions like "Atheism is the belief there is no God" as opposed to "Atheism is the lack of belief in a God." A particularly annoying one is that Atheism is smug or arrogant. What can be more arrogant than believing that the same God who didn’t stop the holocaust will help you pass your driving test?

You have always written strong, believable women characters. Which women in your life do you draw your creative influences from?
Yeah I’ve never seen women as “the weaker sex.” Even growing up in the un-PC 70’s in a working class environment, I saw women hold families together and protect their children like lionesses. My dad was a labourer "The bread winner”. He worked hard every day, but when his shift was over that was his time. My mum didn’t stop working from when she got up to when she went to bed. She was a so called a housewife, but she had two shifts as dinner lady everyday, fostered kids, ran a catalogue for commission, grew vegetables, and still did everything for the home. She worked harder than anyone I ever knew. And this was basically true of all the women I knew growing up. The men worked hard. The women worked miracles.

Friday, 18 September 2015

The wrong sort of woman.

Does my voice offend your ego; have I spoken out of turn?
Are my words clear and uncensored, do they make your anger burn?

Is my colour not your colour, do you have contempt for me?
Is to be white such a triumph, as you review your family tree?

Does my age present a problem; does it wake your bigotry?
Am I dispatched to obsolescence, now I'm decaying "wilfully"?

Do I lack appreciation of any god you call “the one”?
Does her faith conflict with your faith, is it over; have you won?

Is my housework less than thorough, is your dinner not home made?
Is it tiresome after decades, to recall the vows you made?

Is my body less than perfect, so you tell me to my face?
Is my weight such a big problem, that you shame me with disgrace?

Is my sexuality your business; is it fear of me you have?
Do you think to beat and rape me, this will alter who I love?

When I choose not to have children do you think it’s up to you?
Do you own my reproduction and control all that I do?

When I pick up a game controller, is the woman still the toy?
When you leak my name and address, does that action give you joy?

Is your strength your only option, is your dominance gratified?
If you hit me when we argue, do you believe it justified?

As my employer, when you pay me, why is money gendered too?
Do you think, as I'm a woman,  I am worth much less to you?

When you send me threats of violence, do you want to make me cry?
When you call me "feminazi', have you time to own your lie?

Is a woman only someone, who is “born that way” to you?
So you hate me, beat me, kill me, when I tell you what is true?

Is being younger so important, does she reset the clock for you?
Are shared dreams now so exhausting, that you seek out something new?

When you make a list in public detailing all diversity,
Is it so hard to remember to include disability?

When I use social media, why are you so terrified?
When you send me rape and death threats, it proves my point has been applied.

When I question you in public, does that constitute a threat?
Are you so blind to your privilege?

You are no male suffragette.

Saturday, 25 April 2015

"We need to talk about Ivan" Enable column April 2015

On Christmas day 1978 my brother who was 17 died from primary pulmonary hypertension. I was twelve at the time and the memory of my mum telling me, is seared into my mind.

As we tried to move on with our lives, Mum was faced with a terrible dilemma. When she met people for the first time they’d ask, “Do you have children?”
Her answer could be “Yes I have two daughters” and not mention my brother at all or she could say, “Yes I have two daughters and I had a son but he died”

This answer would either prompt an embarrassed and clumsy, albeit well-intentioned, attempt to say something compassionate; or cause a silence of awkwardness from the listener so all encompassing, as to be deafening.

This was the late seventies and although we have evolved more now, in terms of bereavement, this is still too often our attitude towards death, especially in respect of children.

Therefore I empathise hugely with David Cameron in terms of his son Ivan, who had cerebral palsy and severe epilepsy, and who died in 2009 aged only six.

With the current policy towards welfare reform affecting disabled people, many people are understandably angry.  Activists will cite Cameron’s life experience as being one, which should positively inform his policies and whilst they have a point, it has led to unpleasant commenting of a presumed manipulation of Ivan’s memory being used cynically by him as we approach a General Election..

I’m not a Tory supporter but I don’t believe that two issues should be conflated in this way. Ed Miliband is the son of an immigrant and this does not prevent him talking about his father, whilst leading a party who are framing policy around immigration.

David and Samantha Cameron lost their child; their other children lost their brother. If they’re expected never to mention him, then they face the same dilemma as my mum did thirty-seven years ago.

They are no less capable of love for their child than my Mum. No less capable of the paralysing agony of bereavement and no less entitled to mention Ivan, than my Mum was to mention Michael.  

Politics has nothing to do with Ivan and the Cameron’s love for their son has nothing to do with us. He should be remembered and we should remember that politicians are human beings.

Anything less makes us all monsters.

Sunday, 11 January 2015

Sue Marsh -The blogger, blogged.

"Friends, journos, activists Lend me your ears I come here to bury Sue Marsh not to praise her"

Or rather I would, if I was of a judgemental persuasion. And I'm not, so I won't.

As we all know by now, Sue has decided to accept a job with Maximus and the reaction by some in the disability activism community on line, can best be summed up in the words of another Maximus "I will have my vengeance". many are angry and giving vent to their rage.

I'm writing not about Sue's decision, but about the response to her decision. All I can say is it wouldn't be my decision, but I'm not Sue and neither is anyone else. She's explained her reasons in her blog which she didn't have to do, either.

But she did and the backlash has demonstrated why she must have agonised before making her choice.

The problem with the on line abuse is that it negates a reasoned discussion around changing the system from within. Whilst everyone is still too shocked and confused they may lose sight of the fact that we can't negate the efficacy of Sue's new job, until some time has passed and she is able to have the chance to effect change.

It's too soon to decry this out of hand.

People feel so hurt and wounded by the system and its hand maidens and they have every right to these feelings. What isn't a right is to dictate the life choices of others, removing their autonomy over their own lives. That's what we've all been fighting against ultimately.

Neither do we have the right to spread rumours and gossip, any of us, no matter how angry. I've been sent some of this after I spoke out against the verbal abuse targeting Sue. I don't read it and it doesn't change the fact that Sue has made her decision.

I don't listen to gossip. If we take a stand against the propaganda waged against sick and disabled people and carers in the tabloids, then we must apply those same rules to ourselves by not furthering opinion dressed as fact. Otherwise we get into bed with those who tout the notion of us "all being in this together"

Verbal abuse no matter what the reason behind it, is wrong, destructive and damaging. I've endured many savaging verbal attacks on line by those who claim to know my reasons, motivations and feelings and they don't. These are opinions but when these are touted as fact it just looks like angry gossip.

I like Sue on a personal level and I wish her well. She has endured a great deal and has continued. We've benefited from her writing and her campaigning and irrespective of whether we agree with her choices or not, I feel she deserves at least to be free from targeted verbal abuse.

We all do.

Saturday, 3 January 2015

Kicking back.

Mark Kermode and Simon Mayo to those of a non-internet persuasion, host the hugely popular and repeatedly downloaded film review show on R5 live. 

Their fans are many, their show is excellent and their reviews and interviews are superb. The notion that the BBC's mission statement is to educate, entertain and inform is found in abundance here. If there is a BBC spectrum with Top Gear at one end (for arguments sake the very, very bottom then Wittertainment is the other end (top top top)

Today in posting his BBC News film review round up for 2014, Mark Kermode commented that one of his reviews had "made a "kids author" decide I needed a good kicking".

Unpleasant, to have read and much worse to have been in receipt of.

So I'm going to post an email I wrote to the show in November. Carers rights day to be be precise. If your tastes run to the cynical then I advise you don't read any further, if in fact you made it this far.

If not then please see this as my offering some balance and grateful thanks because we tend not to do that enough in my opinion and I felt it warranted a rapid response.

Dear "I'm a man" and "well nobody's perfect",

Writing today to say thank you and to ask if you can say thank you on my behalf.

The value of film has been written about and "wittered" about and contemplated and theorised over, ever since the medium began and your show exists for this very good reason, as well as keeping two old grumps like yourselves off the streets.

Today is carers rights day and having been a carer for 21 years I wanted to express another life enhancing element of film which may not always have been considered.

The redemptive, recuperative and respite producing element of immersing yourself in a film.

When you live a tricky life, of high level pressure, the pure joy of taking time out from that, is beyond measure. Sometimes film addresses the lives of carers and those they love and when done well, it also offers support and recognition. 

I've always found immersing myself in the lives of others to be beautiful and useful. Even a "bad film" offers time away from challenges. 

So I wanted to say thank you to film makers and to your show for this. We live in cynical times where saying thank you is more often superseded by complaint, or met with censure but it's nicer to be nice I've found.

Wittertainment seemed like the very best place to send my thanks.

Hope that's ok,

Nik x