Friday, 22 November 2019

Behind the camera, behind the lens

I’m the annoying one in the family that takes the photos. ‘Just stay still a moment till I take your photo’, ‘oh that will be a great’, ‘oh try again’, ‘oops the dog photo bombed’ you know the drill?
On reflection I think it started when my Dad was first diagnosed with cancer. I realised that all our time together was uncertain so we should celebrate good times and remember to capture it on film too. I’m grateful we did. His last years flashed by like glimpses from a train carriage, sometimes just so fast no memory or image remains. His last photos showed the effect of illness and medication and that hurt. But within those we caught one where he sat with the dog at his feet, content with the world. The dog was my families but we all knew really his primary attachment was my Dad! That photo comforted me for many years after his death. It sat on a table by my chair. It’s 25 years now since Dad died but the urge in me to capture special moments remains. 

He was always my go to for the political discussion. We cried on the phone together when John Smith died. It took decades to stop the habit of calling my Dad to discuss the latest political twist and turn. I can picture his disgust at our current situation in Westminster. I’ve long since decided he would have turned to voting for Scottish Independence as I have but I can really only guess at that. His was the generation that fought together across Europe, who also fought for a better and fairer world in the elections afterwards too. It was his generation who voted for a better welfare state and a national health service. He would not have sat quietly and seen it all undone. 
But I digress, I was musing over photos. As the collector of memories, I’m usually the unseen presence behind the lense. So when I had a professional photo taken for a newspaper recently, I was very uncomfortable. But then he shared them with me and I was taken by the truth he had captured. 
In them I saw the effect of medication for cancer, I saw the recent years of pain and sleeplessness. I saw the toll taken by chronic illness but I also saw a fierce connection to life; the part of me that’s grateful for all those years and stubbornly determined to keep going. I saw how really exhausting that is too. 

Rather than wish he had touched them up a bit ( well ok, maybe a little bit of me did), I was thankful for my truth to be seen without pretence or flattery. Their beauty is their honesty. And that’s ok. 

Sunday, 10 November 2019

Pink ribbons, black dogs and equity

I’m writing blogs in my head at the moment but then somehow they don’t find their way to the page. Getting through each day is taking my energy and I’m busy trying to hold on to a life that remotely looks like it used to. This week however I’ve managed to cause something of a stushie (Scots meaning a row) by challenging the pink wash of breast cancer. I was interviewed and mentioned that I didn’t wear the pink ribbon at all this year and feel that the pink hue that has become breast cancer awareness month is at risk of trivialising a very serious condition. 

The Times of a London decided to cover it as me calling for the pink ribbon to be scrapped! Which I didn’t and absolutely agree that the pink ribbon has become an international symbol and as such has helped to raise much needed income and awareness and that’s much to be thankful for. And Estée Lauder when they introduced it in 1993 did not set out to declare that thereafter everything Breast Cancer needed to be pink and fluffy. But there is now a serious risk that it disenfranchises many of the women it seeks to help. There is a pressure to cover up your scars and put on the pretty scarf, the make up, the smile and pretend that all is well. 
From the experience of four diagnoses I admit that the time when everyone else is thinking, that’s it over now, is probably the very time I’m at my lowest. Initially for me it’s just getting through each stage, the adrenaline keeps the momentum and then thump- it stops. And for me then the black dog drops by and stays for a while. I wonder now if it’s all part of the way it is, a crucial part of acceptance and moving on. Maybe I should accept the black dogs head in my lap, rather than try to  chase it away. I’m sure it’s one of the reasons I struggle so with the pink hue because that black dog has settled alongside me and tucked right in too often over the years.
It’s little wonder when each day brings fresh mobility challenges and pain too. If I had wanted to launch a campaign this week it would be for doors that opened for people in wheelchairs. I did eight interviews for BBC radio this week on the pink ribbon controversy and when I had break I asked about an accessible toilet. The kind woman at reception came with me, somewhat apologetically. ‘I wouldn’t normally do this but the toilet door is so heavy to get in and out’. We arranged for her to come back for me but I was ready to leave earlier so I tried to get out on my own. Look I’m a newbie to the wheelchair user world so if there are any tips please pass them on! I was firmly stuck behind that door. So like a child waiting for her Mum to return, I sat not very patiently! 
And that’s not the first time. I was recently at a conference on accessibility, learning with great enjoyment about the opportunity that robotics can offer to improve accessibility. With excitement about the future I went off in my mobility scooter to the toilet. Again the doors defeated me and I had to ask for help. I’m not alone in this, where are our priorities in buildings when we don’t consider the frail or disabled when we design the simplest of things-a door?
 A friend sent me this cartoon this week and it says it all. 

I know I’m resilient and stubborn and I have so many good things in my life, but I recognise that the dual impact of spinal damage and breast cancer is my biggest challenge so far. So my plea from this week is let’s not pink wash breast cancer and allow people to express the reality of the impact of a diagnosis and let’s not claim accessibility when so many people can’t access a toilet independently.

And now I need i lie down.......