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.