Friday, 2 June 2017

Politicians Pledge for disabled people

With only a week to go before the 2017 general Election, I'm reposting my Politicians Pledge for disabled people & carers from 2015. I've amended and added to it in the light of the devastating cuts to disability benefits and services.

I'm going to ask candidates in my constituency to sign it and some others via social media. Sadly that won't include Tory candidate Daniel Kawczynski as he blocked me on Twitter (I think it was because   I asked him to watch the Ken Loach film "I Daniel Blake")  but I'll email it to his office. 

His PA Helen is absolutely lovely.

I'm also going to send it out via social media. If you want to forward it to candidates in your constituency that would be great. Ask them to reply to and I'll add their name. Let's see how this pans out.

Best Nik x

“I the undersigned pledge not to forget disabled people and carers once the election is over but instead, I agree to add my name to a list of MPs who are in agreement that no policy, which directly  affects disabled people and carers, should henceforth be drawn up without disabled people and carers being involved in it. 

I call for a committee of independent cross party disabled people, carers and campaigners, (with no financial input from government except travel expenses) to be a working group within my constituency, who will be consulted over all policy decisions that I'm expected to vote on. In the case of abstaining from the vote I will meet with the group to explain my reasons why.

I also agree to be held accountable if the aforementioned group is not assembled within 3 months of my election.

Because I actually do care and this is just the sort of thing that made me want to be an MP in the first place”

Signed by : 

Dr Laura Davies ( Labour Parliamentary GE Candidate for Shrewsbury and Atcham)
Emma Bullard (Green Party GE Candidate for Shrewsbury and Atcham)

Sunday, 14 May 2017

Richard Herring is a twat

This morning I’m mostly thinking about jokes.

Last night we managed to get to see Richard Herring at Theatre Severn. I say managed because during the day we’d had a pretty bad episode with our 20-year-old learning disabled daughter Emily that I wasn’t sure we’d resolve in time for us to the see his show, aptly entitled, The Best. After 4 trips to her house, and several phone calls in between She was eventually calm and happy enough for us to leave her.

So we got to the show. Unbelievably we weren’t the last in. I had no makeup on from crying and Phil was bruised and we were both really shaken up by it all but we made it. It was really important for us both to laugh last night.

It was a collection of highlights of some of Richard Herring's best work and remind us all why he is the best at what he does. I saw him in the same theatre a few years ago and at one point the microphone and then the lights failed. He kept going, making up new material on the spot about the technical failure and we kept laughing.  

What a twat.

He’s also a twat because he has a diva requirement in terms of what he expects from the theatre staff. At the end of every show the staff stand at the doors holding collection buckets raising money for Scope.  That’s the problem with celebrity culture these days. It’s all about them. Bastards.

Probably one of the most obscenely annoying traits Richard Herring has, is in his attitude towards making jokes about subjects, which some people don’t think anyone should find funny at all. Because Richard Herring is a twat, he deals with it in a nuanced and balanced way. Mining the subject for the inherent humour rather than laughing at the subject itself. 

I wrote a piece about rape jokes a couple of years ago for The Independent. I didn’t write the headline, I made a point that laughing at rapists is the key, not their target.  It’s a tricky issue but it’s an important one because I think humour is a lifesaver but that’s just me. 

I need to make clear that I don’t think it should stand in lieu of the emergency services. I don’t want to give the Tories any more ideas especially as they’re currently very busy trying to tell us why we should vote for them. Actually not for them, so much as for interim head teacher Theresa May.

The woman who repeatedly tells us that she’s so strong and stable, she needs Donald Trump to help her walk across a flat surface. I don’t know what Michelle Obama was doing highlighting that fact that slaves built the White House, but she needs to rethink their walkway crafting ability, because it made our Prime Minister have a little wobble and The Donald, famed for his chivalry, had to reach out and grab her. He did his boy job brilliantly when she had that girl job wobble. 

Take that Hilary Clinton, you emailing loser.

Jokes about bad things aren’t the same thing as bad things. 

That’s like saying ice cream and wafers are the same thing. They often exist in the same area but their physical components are so different as to be entirely distinct from one another. Try making a coke float with an ice-cream cone rather than actual ice cream and you will see the wisdom in my logic. Also you may have to Google “what is a coke float” But more importantly when you’ve finished doing that you could come and rescue me from my analogy, which I’m lost in, and actually I'm starting to feel a bit frightened.

I read a blog this week, which lifted a quote from another comedian’s show. The quote was about rape and the joke was about the juxtaposition of sentencing for murder as opposed to the rape of an elderly woman. The joke wasn’t mocking the elderly woman it was stating the fact that if you rape an elderly woman with dementia the sentence will not reflect the crime.

That’s a serious point wrapped up in a few minutes of a 60-90 minute comedy show about other serious things and delivered to people, who, it’s doubtful, would ever attend a lecture on the issue. But because that comedian is also a twat the blog tended to focus on how offensive that comedian is.

It’s all about the proportional responses to punch lines and storytelling but it’s also about confirmation bias.

To put it another way ”Seek and ye shall find” said the catholic priest to the choirboy.

That was all you. You made that offensive connection and I'm ashamed of you.

My life from the age of twelve when my brother died has been pretty "challenging" and disability has been a large feature of my life. Michael's heart condition, my sisters asthma, Mum's Alzheimer's, Lizzy, Emily's and my Autism, etc. 

I campaign and write on the subject and have fought very hard against disablist and disabling attitudes. The lack of empathy which is so popular along with the rise of populism is worrying and exhausting to tackle,That’s why I’m not keen on humour, which in anyway, denigrates, mocks and further humiliates people over something which they can’t help ; like illness, disability, skin colour, sexual orientation and inherent gender. 

The journalist that Trump got a huge laugh out of from his audience.

Religious beliefs don’t fall into this category because they are a choice, without accompanying evidence. Where the power balance remains manifestly in the hands of the structures and systems of the hierarchy of religions, leading to proven abuse of us, by them; then we should all resist doctrine and punch upwards with humour, because they can take it. If your religious beliefs are so shaky that Ricky Gervais's atheist tweets compromise your beliefs in some way; perhaps you should address whether your beliefs are strong enough to justify you determinedly ordering women what to do with their own bodies and reproductive choices. 

More than anything we need to recognise that humour is very subjective and links directly to our emotions. A short time after my brother died I was watching an episode of the Dave Allen show. Far ahead of his time in challenging the systems and structures I’ve just mentioned, he was and is, a comedy genius to me.

The sketch concerned two funeral processions approaching a cemetery and then both racing to be the first at the graveside. I watch it now and laugh. I watched it then and cried.

Timing is everything in comedy. But for those offended, it’s worth investigating whether the timing for you, in your own life, is robbing you of a clear perspective. Reflecting on whether it's emotion, or intellect that has triggered your anger is important. It might be both but a default to your own emotion alone needs closer examination. Placing the context of the joke into the context of your life is just an idea but one that is worth at least some consideration.

There are comedians for whom context is irrelevant. Comics who find that the punch line need go no further than “Learning disabled people are retards and people who are retards are funny, aren’t they? With their funny walk and their funny talk and their funny mistakes”

Yeah that’s “funny”, as is the fact that they endure hate crime, sexual abuse, financial abuse, violence and neglect and routinely entirely disenfranchised in society, buddy. Retard and retarded mean learning disabled. Dress it up anyway you want, you mean learning disabled people and you know you do. I don't want the word banned even though, naturally in asking people to choose not to use it, that's what people have assumed and argued with me about. That's why my twitter name is Mrs Nicky Clark. It's not some kind of anti-feminist reclaiming of subservience to my husband's surname, it's a reference to the fact that when I started campaigning many people suggested I was a pseudo Mrs Mary Whitehouse.

Annoyingly for them free speech is still free when it's me using it.

Comics who rely on this type of reaction laugh, are lazy and their audiences are lazy too.

Richard Herring expects his audience not to be lazy and his comedy isn’t lazy either. This is why he’s a fucking twat.

Saturday, 15 April 2017

"They called the cops Mummy"

Reading this piece and watching the video in The Telegraph this morning has led me to revisit something that happened to Emily. I'm posting it so that people are not mistakenly believing that this is only something that can happen in America. My heart breaks for this boy and his mother.

On 22nd November in 2016 at her home Emily went into a meltdown. A care worker phoned the police who arrived at Emily's home, with the blue lights lit. They were let into the property by the same care worker and after period of time where she didn't calm and things didn't de-escalate, Emily was placed in a prone restraint on her bedroom floor and handcuffed.

The care worker declined to press charges against Emily and it's a good thing she did, because as I understand it, Emily would then have been taken by the police to the local psychiatric hospital and sectioned.

I live in fear of that happening again. I'm so frightened I can't begin to even tell you what that is doing to me. I can't begin to imagine what this must have done to our beautiful girl.

Apparently with her hands still handcuffed behind her back, Emily went into the living room, picked up the sky remote control and put Thomas the Tank Engine on the TV. The incongruent mix of those two images is making me cry as I type.

When we found out we went to see her. She had marks on her wrists and she put on a youtube clip from 101 Dalmatians of the scene where the maid is locked in a room by the two villains and shouts "I'm calling the police"

Emily said "They called the cops Mummy."

I can't imagine ever making that choice myself. Even when I sustained broken bones and alone with Emily in full meltdown, I never made that choice. I'm not better than the individual care worker who made this decision, I just know that the police have a course of action and a protocol they must follow in an emergency. That's why I never called them.

The police aren't social workers, they're not care workers. They deal with emergencies and they deal with criminals and in any acute situation they have to contain it for everyone's safety. That's what they did. Crucially however the police should never have been called in the first place.

We've been offered a meeting with the police and I'm going to accept because this is a reality for learning disabled people in our country and around the world.

Lots of people are talking about lessons being learned from this. What this is supposed to have taught Emily, or anyone with autism, I have no idea.

Tuesday, 4 April 2017

The Catastrophe of casual disablism.

Like pretty much everyone I love Catastrophe. The show written by and starring Rob Delaney and Sharon Horgan details a couple struggling with all the issues that couples struggle with. Family, work, sex, illness, ageing parents and siblings.

It’s written with huge heart and it brilliantly observes the struggles of us all. In the second series the issue of foetal testing in relation to Downs Syndrome was also broached with great integrity and compassion.  It was done without being judgemental because the characters are relateable and the writing was sensitive and measured, whilst still being funny and kind.

If any casual bigotry surfaces, it’s met with a grimace or frown.  It’s brilliantly judged because as with all great writing no subject is taboo but it’s dealt with.

On Sunday I caught up with last week’s Catastrophe.  It was World Autism Awareness Day and I’d been tweeting my film out as I do every year and this year as with many years recently, the terrain for disabled people is tough going. There’s a hardening of attitude from government and a tabloid need for scapegoats, so disability benefit claimants are hounded by the DWP and the public is accepting of it. So I needed to take a break and to vaccinate my brain with laughter.

Watching Catastrophe was wonderful as always. Funny, heartfelt and sad in equal measure.  Rob Delaney and Sharon Horgan are as wonderful on Twitter as they are in character. Tackling the nonsense of Trump and the horrors of sexism, the trampling of women’s rights to their own reproductive choices and the cruelty of anti-refugee rhetoric.

They’re admirable and really well liked for very good reason.

Then watching the show, I felt like I’d missed a step walking down the stairs.  

On a trip home to Ireland to visit her dad, Sharon’s brother Fergal produces a photograph of her as a  teenager and as brothers, do he mocked her. When he was asked where he got the photo from, he replied,

“Oh Sharon used to be a flight attendant for retarded slut airlines”

Then all three characters laugh.

No frown, no question, just a big laugh.

That’s where the problem lies. Fiction, as I’ve always said on the subject of pejorative insults, needs to be free to use language which is unpleasant, because it needs to be highlighted as the actions of unpleasant people. No writer should sanitise the world with censorship to make it as we would wish.

In fiction we can see that unpleasant people, unpleasant characters will use bigoted phrases to reveal themselves as bigots, racists, misogynists and homophobes. This is also true of disablism.

Where I felt the step was missed was that Rob Delaney and Sharon Horgan gave the joke legitimacy. It was ok, because Sharon laughed. It was funny. It was fine.

It was the laughter that changed it from an unpleasant comment to acceptable ridicule. Irrespective of who it was aimed at the word "retarded", is still a punch in the guts. Because it mocks learning disability, not teenage fashion choices. 

"Spastic Slut" and "Mong slut" would do that too, but retarded is the last acceptable bigotry because "loads of people say it" so that must mean it's ok.

The problem is that when a well loved character laughs at a joke which uses “retarded” or any disablist slur as it’s axis, at it’s root, then it sends a clear message that this is more than ok. 
Laughter is the fastest communication of any stigma intentional or not.

It’s very difficult to raise this as an issue because of the popularity of the programme and it’s makers but actually the normalising of the joke by popular people is the problem. We can’t just question the choices of people we loathe, or disagree with, we have to question everyone or we’re cherry picking examples of the issue to suit ourselves.

The treatment of learning disabled people, particularly in this political climate is worrying and dire. To call out disablism is key. Casual disablism is no different. 

I don’t ever ask for language to be banned. I ask for people with a public profile, with the luxury of popularity and with the privilege of creative freedom, to decide whether normalising stigmatising attitudes, really is the serving their core integrity. Or whether in encouraging millions to laugh at a joke with disability at its core, they're actually doing the same as those they decry.

Tuesday, 28 March 2017

An intelligent woman with a network of friends (Warning: Blog contains descriptions of domestic violence)

My Parents 1956. Kenya

My father was a tall man 6’ 3” and I often wonder if the Parkinson’s tremor my 5’2” Mum developed along with her dementia, was a result of the blows he dealt to her head, during the 21 years in which they were married and apparently, fairly soon after they met.

A few years after I was born my mum became pregnant for the fourth time and whilst in hospital after a miscarriage, brought on by his violence towards her, my Grandma, his own mother said to my mum, “I love my son, but would you really want another child with that man?”

His violence, as is routine, extended to his children too. Once when my brother, Michael was getting out of the car at the supermarket, his car door touched the door of the car parked beside us. The driver leapt out and started complaining. He hadn’t even checked to see if there was damage, he just launched into a complaint.

My father turned to my brother who at 16, was almost as tall as he was and without a word, slapped my brother very hard across the face in front of everyone.

The angry man looked horrified. My father said, “There, are you happy now?” and walked into the supermarket.  We followed. We knew not to speak or to complain. My Father said to Michael, “I’m sure you understand why I had to do that. Be more careful in future” My brother said nothing.

The last photo taken of my brother summer 1978

We knew the anger my father carried meant that violence was always a real and present danger. Even over the simplest of things. As a child I hated combing my hair, so it would sometimes form huge knots. Mum would painstakingly and gently comb the knots out, chatting and laughing with me about it all. She knew it wasn’t deliberate on my part. This would irritate my father.

He decided I was being spoilt so on one occasion he combed it for me. His “combing”, literally meant pulling clumps of hair out of my head. It took ages and it was one of the most painful things I remember. I didn’t cry. I was seven and I knew that if I cried, it would make it much worse. So I just sat there while he did it. He didn’t even seem angry.

The violence was physical but it was also emotional and verbal. He liked to demean us. Sometimes with “jokes” always at other people’s expense, sometimes by telling us how stupid we were but also he would criticize one of us and encourage the rest of us to agree. This would extend to other people outside the family who would usually protest. 

me, my sister and my brother 1970 Chester.

 He would sometimes be hysterical over some perceived slight at work. Memorably sending an anonymous gift-wrapped wooden spoon to one of the secretaries who he had decided was causing trouble for him by “stirring”. He was very pleased with himself, when he’d heard she’d burst into tears.

Rules were everything. We weren’t allowed downstairs in pyjamas, except on Christmas morning. We had to put things back “where they lived”. We had to do our jobs without excuse and to a high standard. We couldn’t criticize, complain argue or “showoff” All standard stuff except the consequences.

Once when I was told to tidy my room, I was practicing ballet instead. Little girls often get distracted like that. I remember the door opening and my father slapping me so hard across the face that I fell over. Again he didn’t seem angry, just white faced. “I said tidy your room” he said and walked out.

He was capable of huge emotional cruelty too. After the last time that he left, which, over the years was a frequent event, my brother was diagnosed with a terminal heart & lung condition. My father had refused to allow Mum to go with him to the diagnosis. When they came back from the consultants in Stoke my father walked in and said to my Mum “He’s had it” and walked out.

Michael was in his room playing his guitar and Mum obviously didn’t want to ask him, so in terror she’d phoned the GP and asked if she could speak to the consultant herself.  He explained that Michael had a very rare condition, which would last ten to fifteen years, before he died.

He was wrong, Michael died six weeks later after getting a cold and part of Mum died with him. My father had to be found by the police on Christmas Eve, as he’d taken a woman to a hotel.  I don’t know who the woman was. My father always denied having an affair with anyone. Always, no matter how much evidence my Mum found to the contrary.

After Michael’s death, my Father refused to allow Mum to participate in choosing the wording on Michael’s gravestone. “It’s my six foot of ground, not yours” he said to her, to his wife of 21 years, to the mother of his dead son.  He wouldn’t even walk beside Mum, behind their child’s coffin into the church. After Michael died, Mum divorced him.

In 2011 after Mum died, my father transferred his anger onto me. In the days after he’d died I’d asked him if Mum’s ashes might be interred in Michael’s grave. He said yes. Mum was cremated and we’d chosen a casket for burial. It was one of the few times I’d ever felt gratitude towards him.

Then my Father changed his mind. He’d been causing trouble with family members and for the only time in my life, I’d told him exactly what I thought of him doing that. I think like Mum, the pain of grief made me unafraid of anything, even him. I didn’t swear and I didn’t lose my temper, I just told him to stop causing trouble and to stop being the puppet master of other people’s pain. He put the phone down.

A few days later, before the funeral I walked into the house and a friend was with me. I played the answer phone messages and one was from him and he was almost screaming with fury

My friend said, “I thought you’d been exaggerating about your Dad. I know now you weren’t. What father does that to their own child when their mum has just died?”

He followed this up with a letter revoking permission for Mum to be laid to rest with my brother. There was no discussion, no conversation, no debate. There never is with an abusive bully. If you stand up to them they act as though they’ve been attacked. For bullies the world is full of enemies and they’re always vigilant.

That final cruelty was one too many for me. I never spoke to him again and five years later he died.  I was told that I was not welcome at the funeral, by his widow, who I hadn’t spoken to for over 30 years, but I went anyway. It appeared from the moment we arrived that his first family had been a secret.

I needed to see his coffin. I needed to know he was really gone and I needed more than anything not to allow his abuse & bullying to continue. 

I’m not sure that domestic abusers every change. There is denial and huge shame experienced by victims. A refusal to allow the truth to be known, allows the history of the abuse to be rewritten. No one wants to believe that the people we love, the people closest to us can cause us such pain. Fear is the primary driver in silence though. I can only write and speak about this, now that he's dead. That's the length of the shadow that is cast.

Irrespective of the monster that he undoubtedly could be, I loved my father. I have no idea if he loved me or in fact anyone. I think he had needs and I think he was capable of affection, but I believe he was a true narcissist, for whom his own comfort was an imperative. 

Illness frightened him, “weakness” appalled him and poverty disgusted him, yet his own human frailties belonged to a capacity of self awareness he didn’t wish to learn. I wish the man being described in the speeches in that church, had been my father. He sounded like a wonderful man. No mention of us was made. Not even of my brother who’d died.  I expected nothing more and I got nothing less.

I knew nothing of the extent of the cruelty of my father that I hadn’t personally witnessed until many years after he’d left. I couldn’t understand why he didn’t care about me or my nieces and nephews. I thought there was something wrong with me that meant he didn’t want to know me. Gradually over the years, Mum explained.  The code of silence was broken and she was able to let go of a lot of the blame, through the catharsis of talking. I’m detailing this all here for the same reason.

In the six years since my Mum died, she’s stayed at the funeral home who took care of her. The idea of a family argument over my brother’s open grave didn’t appeal in the least to me. Mum would have loathed the idea too.

After my father died, I waited a year out of respect, before, In January asking his widow to transfer the deeds of Michael’s grave to me or my sister. She said she had no idea where the deeds were but would transfer them to my sister who after a break of several years had re-established contact with our Father, after Mum had died.

I discovered today that, shortly after this request from me, my sister transferred the deeds into her name. I also discovered that she is choosing to respect my father’s wishes and not allow our Mum’s ashes to be buried with my brother.

My sister is a devout Christian. She believes in forgiveness of sin. I love my sister, as I loved my father. That isn’t always enough though. Grief is different for us all and it can take a long time to work through.

Possibly he apologized to her in the years before he died. Possibly she is honoring her father. 
Perhaps she remembers our father differently. Perhaps she has forgotten what he was capable of.
I remember though.

I remember the night my sister as a teenager came home fifteen minutes late from a night out.
I remember him telling her to get upstairs and clean her “pigsty of a bedroom”.
I remember her, emboldened by cider, saying, “Why should I?”
I remember thinking 'he’s going to kill her this time'
I remember my father dragging my sister up the stairs by her hair.
I remember the sound of the dog barking and my Mum pleading with him not to hurt her.
I remember the sound of my sister’s nose cracking against the banister rail.
I remember my sister screaming as he threw her into her room.
I remember him running down the stairs, the back door slamming and his car screeching off the drive.
I remember going into my sister trashed room with my brother and the blood running from her broken nose.
I remember Michael telling me to go back into my room, in case he came back.

We were all his targets. Everyone who loved him, was ultimately hurt by him, let down by him and left by him, to pick up the pieces, on their own.

Monday, 27 February 2017

Parking Points Campaign

When my daughter Emily was three years old she was diagnosed with learning disability, autism and ten when she was diagnosed with epilepsy.

Now 19, Emily is beautiful funny and fascinated with many things. She can become highly anxious and present behaviours which challenge.

When Emily received Disability Living Allowance she was in receipt of a Blue Parking Badge and this helped her in so many ways. Her lack of complete cognitive understanding can cause her to become overwhelmed when we’re out in public. Yet as with all 19 year olds she loves to go into town shopping, go to the cinema and go out for day trips. The close proximity of a disabled parking space made these trips much easier for her and for us.

In the old days of Blue Badge eligibility I would be able to take proof of benefits, a passport photo of Emily and other forms of ID to my local mobility centre in town. I would receive the badge there and then.

When Emily went to a residential school she naturally lost all benefit allocations.

When she moved into her own home last year, with a three to one care package, she began her independence and was back in the heart of the community.  As she has bonded with her carers she has grown in confidence and asked to go on a day trip to Thomas Land. Like many learning disabled people on the autistic spectrum Emily loves Thomas the Tank Engine.

I tried to call the mobility centre to make an appointment to pick up a Blue Badge. Emily had transferred over to PIP, as I was told there was no longer DLA but her disability remained unchanged.  She was just taller.

I learnt that although the mobility centre was still there, they no longer allocated Blue Badges. This was done by a third party provider, once the Council found that everyone applying met the eligibility criteria.

I spoke to a very nice man at the council eventually, who asked me what Emily’s points were on the mobility component of PIP. 
I said she received the higher rate. 
He said “No how many points does Emily score for moving around?”

So this was where it all started to go wrong. Emily scores zero points for moving around because she can walk more than the required number of metres. She has to have someone with her all the time and will do for the rest of her life but because Emily can physically walk for a short distance she scores no points for “moving around” at all.

Emily can walk. Emily can run. Emily can run straight in front of a bus, if she’s frightened or angry or upset.  But although Emily is profoundly learning disabled she is, to use the phrase that is in the news today, not “really disabled” when it comes to getting a Blue Parking Badge.

Whereas once she was eligible, now this has been cut from her life. A Blue Badge is crucial for learning disabled people, for carers, for those with Dementia and people who are partially sighted but along with other conditions, all people with those disabilities are no longer eligible for a disabled parking badge. If we lived 15 miles away, in Wales this wouldn't be the case but we live in England so it is.

The Badge, which is not a gateway to anything other than a parking space, is to be issued so sparingly that many disabled people are not allowed to have one. Like Emily although previously qualifying, the new PIP ruling on moving around is the determining factor which Councils have to abide by.

There is at the heart of this a staggering inequality and a return to a time when disability was only deemed to be apparent if there was a physical inability to walk.

Many thousands of disabled people need the support of all aspects of independent living.  The Blue Badge makes community and independent living easier. It facilitates accessibility to many aspects of life for those with a learning disability and so I’m asking you to support my new campaign.

The “Parking points” campaign is calling on the Government to reinstate Blue Badges to those in society, recently deemed ineligible. To recognise that disability comes in many different forms. To assist councils to give the people they work for, the dignity of a full life in every way they can and to stop this divisive practice of redefining who is and who isn’t disabled.

In conjunction with my campaign I launched a petition on the government website. Please sign and share and please, if you are a charity or group, activist or individual ;  support, sign and share the link.

My Petition (relaunched after it was closed for the election)

Not all disability is visible but everyone with a disability should be allowed to be seen.

Nicky Clark

“Parking points Campaign”

Thursday, 23 February 2017

Sound and fury, signifying nothing.

As a campaigner who has pushed for equal representation of disabled people across the entertainment industry for 9 years, I read the proposal by the Minister for Disabled people, calling or wider representation of disability in the entertainment & fashion industry, with interest.

TV & Film, the games industry and all forms of media are the greatest influencers we have and it's vital that if we are to hope for equality of representation, that disabled people are routinely featured. 

When I launched my campaign via the guardian in 2008, I contacted the ONS in order to get statistics on disabled consumers.

My point was that, as disabled people do everything that non disabled people do, e.g. buy food, go on holiday, wear clothes, utilise banks and drink alcohol, then it was confusing to me that advertisers didn't feature any disabled people doing any of these things in their advertising. The response from the ONS was that they didn't hold any statistics in this area. 

The problem to me was clear, why was an entire section of our collective community being excluded from the section of life that the majority of people experience. TV and film fashion and music and latterly the gaming industry seemed to have its own set of impairments when it came to representing disabled people. They didn't seem to be able to see, communicate, hear or understand why equality of representation of disabled people of all ages was important. 

However now that The Minister for Disabled People has raised the issue perhaps things might change. As long as none of the disabled performers, models, writers, game designer, singers, directors, musicians, paralympians and fashion designers intend to rely on motability vehicles or any of the in work benefits, crucial to achieving this representation, that is. That may prove
trickier, but I digress.

It's been identified by Channel 4's Dan Brooke that there is a financial benefit to companies in placing disabled people in ads. In recent times the financial deficit has precipitated an austerity, which places disabled benefit claimants. at the forefront of cuts. The narrative of “scrounger and striver” has been widely touted so it's good to know that disabled talent is making some people some money, at last.

I leave the money making and taking, up to others as this is a hidden benefit for millions of disabled people. I'd just like to see more people like me and my children represented.

I launched the campaign because my daughter Lizzy was the first person in the UK with autism to play a character with the same condition. But I’ve digressed again.

I'd like to believe that millions of disabled people can see themselves and their stories shown and appreciated. Stories and games they’ve written or designed, drawn, portray and direct. Stories that feature disabled protagonists where the least interesting aspect of the character is their disability. Not a plot point which means they must be saved or portrayed by a non-disabled actor en route to awards season glory or as an aspect to a music video as an interesting side note.

People like us are everywhere but the reluctance to reveal diagnosis for fear of backlash or further stigma walks beside us all the time. When I revealed my diagnosis of Autism I was called brave because in this day and age it is brave to say that you’re different. The beauty industry spends a great deal of time trying to get all women to look between 25 and 30. If looking your age is cause for pause, then how can full acceptance of all diversity be achieved.

Non-disabled representation of disabled life can be part of the picture but currently it is the only game in town. How many disabled performers are invited to casting sessions every week. When the casting team have a duty to present the production team with a full range of suitable candidates, disability must feature too. I would also like to see disabled children in all toy catalogues because, as strange as this might seem, disabled children like toys too.

Authentic portrayal and inclusion was the basis of my campaign. I'm sure we can look forward to the representatives hand picked by The Minister for Disabled People, to represent disabled people and having the best interests of disabled people at the heart of what they do. I wonder how many of them will actually be disabled people, I guess we'll have to wait and see. 

Sunday, 12 February 2017

The online sorting hat.

When the internet was invented,
it could never have been known,
That women would barge in there and just make themselves at home.

But they did and no one stopped them
and they’re everywhere now you see.
It’s just awful, even CAPS LOCK can’t prevent their tyranny.

But the fight back is determined
with a voice sung loud and free,
Men are rising like a phoenix from the ashes of masculinity

So what follows is the story of the brave,
The bold, the few,
Just remember women reading, that the tormentor here is you......

He explains that you’re the problem,
You’re the reason for the fight,
He is vocal you are vocal but this means that he is right.

He will tell you he is nervous,
Of your subjectivity,
He is only trying to help you but you just won’t let it be.

He instructs and give you censure,
For the passion you possess,
He is angry, you are angry but remember you are less.

He will offer bland opinion,
Of where you went wrong today,
He is sad that you won’t listen and you won’t do things his way.

He is weary of the women,
Who like you will speak their mind,
He is speaking you are speaking but you’re wrong, I think you’ll find.

He will bask in appreciation,
Of the people who agree,
He is relieved that their intelligence understands equality.

He will detail to be helpful,
All the qualities you lack,
He is certain, you are certain but it’s him under attack.

He has emotions and shows kindness
To himself and when when he snaps,
He was driven to it really, it was you who set the traps.

He feels exasperation,
At the issues which waste his time,
He has opinions, you have opinions but you always cross his line.

He is full of admiration,
For the women who comply,
He is patient in explaining that you should give that a try.

So the moral of this story, is one both old and true,
Some men are still just sexist,
Fuck that shit, keep being you.

Monday, 16 January 2017

Message in a bottle.

Today is apparently Blue Monday. A named coined by Dr's at Cardiff University to predict the day of the year where things are at their bleakest and most depressing.

Currently that is everyday for me. I'm sure that's true of millions of disabled people and carers at the moment.

Last year was spent fighting for Emily. If I'm honest every year has been spent fighting for Emily since she was diagnosed at 3 with autism. The sad truth is that the fight for her was much easier when she was a disabled child than when she became a disabled adult. Our empathy, funding, services and protocols surrounding vulnerable children is clear. They may be limited but they are clear.

As a society however the rules change when these vulnerable children become vulnerable adults. The spotlight shone brightly on Winterbourne View. We were told things would change for the better. I believe that the intention is there for this to be true but as we know, intention and application are two very different things.

Responsibility and an interpretation of responsibility, are two very different things as well. It doesn't matter how many people are reminded of their duty of care under the Care Act, it seems there is always a way to stipulate adherence to it, yet a departmental distance from it. 

The threat we have lived under everyday for a year now is that Emily may be admitted to an assessment and treatment unit.  This is a psychiatric hospital. I strongly believe and have had this this verified by professionals, that if Emily is placed there, she will never leave.

There is no clinical need for this to happen, but one based on a possibility that Emily's current care package may break down, due to her behaviours which challenge. I'm told that if that were to happen, there is no other provider able to pick up Emily's care.

Yesterday I learnt that the lead psychologist in Emily's care has gone on long term sick leave. This is not their fault, but the system should be robust enough to continue seamlessly for Emily. I don't have confidence that this will be the case. This person is co-ordinating everything. Problems are still ongoing but now, with no idea of who will pick this up or what will happen to all the outstanding issues, which I'm battling to resolve already, I now feel hopeless.

I'm at breaking point. The fight which consumes my days and torments my mind at night, is an ongoing one because I feel there remains a collective societal lack of knowledge and true understanding of what it means to be an adult with a learning disability. 

Emily is tearful and anxious much of the time.

I'm including a portion of an email that I've just sent to everyone working with Emily. It's a reflection of where I am and where Emily might end up through no fault of her own. I feel broken, hopeless and utterly desperate for my daughter. I don't intend to make things any worse than they are but I have no idea what else to do. If you can circulate this, if you can help or know someone to send this to then please do. 

It's my message in a bottle that I'm throwing into the sea of the internet, in the hope that we can be rescued.

I'm also trying to resolve Emily's return to Education. There is a
meeting proposed for this. However both (redacted name of Education rep) and (redacted name of Continuing Health Care rep) are
clear that funding for this is not their responsibility.

I have also been in contact with the police twice now. They can make
no guarantee that they won't arrest Emily if they are called to the
property again. They don't feel it's necessary to meet with us but do
link in with social services.

I contacted the social worker involved in Emily's care
previously during transition to the bungalow. She has told me that as
Emily is continuing health care funded, it's unlikely she will be
permitted by her managers to be involved.

I'm now at breaking point with all this.
Many of these issues are entirely avoidable.

This weekend I had looked forward to a break but after 2 very
distressed phone calls on Saturday, numerous phone calls in the week
and several visits, I didn't get that break as we had to visit Emily
on Saturday night in order to deescalate her distress..

The last time I took a break, staff phoned the police and Emily ended
up in handcuffs on her bedroom floor.

I can't overstate my fear that due to several pressures, problems and
avoidable mistakes, our beautiful girl will end up in an Assessment
and Treatment Unit.

This is contrary to best practice guidance. There is no clinical
reason for that admission. During transition it was a possibility due
to there being "no suitable accommodation"

Yet the bungalow Emily needed was there. I just had to fight for it
against all the agencies in place to support her.

I'm exhausted from the fight of 2016.

Can it really be said that everyone is working together to prevent my
having to fight Emily's admission to a Psychiatric Hospital ? Can it
be said that any of the things I'm fighting for, for Emily are my
responsibility or role.

I do all these things because I have to but I
shouldn't have to because there are many professionals involved with
Emily's care.

I know that all professionals are hard working, decent people,
managing budgets at a terrible time in the history of the NHS and
local government and are very busy.

However Emily is a valuable and vulnerable young woman, who needs to
have her voice heard and her needs met.

I therefore propose that an urgent meeting is called as soon as possible.