A new book published by a Scottish charity containing stories that have captured the hearts of people up and down the country, has been launched in braille and as an audio book.
Humans of Scotland features Scotland rugby international Doddie Weir speaking candidly on his experience with Motor Neurone Disease (MND), the book shares personal pieces on the struggles of living with illness, disabilities and as an unpaid carer.
Remarkable in their honesty, the stories are a heartfelt contribution to our understanding of what it means to live with significant challenges from recovering from mental illness and addiction to life after cancer, coping with hearing and sight loss to living with arthritis as a young mum, among many other subjects.
It has been published by The ALLIANCE, whose vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre.
With a foreword from the First Minister, Nicola Sturgeon, the book contains stories that stay with us long after they’ve been read. The publication is the result of a storytelling project by the Health and Social Care Alliance Scotland (the ALLIANCE) that invited people to come forward to share their experiences.
Professor Ian Welsh OBE, chief executive of the ALLIANCE says the book is a powerful look at the lives of those whose stories need to be heard: ‘Living with a long term health condition, disability or as an unpaid carer presents challenges that often must be overcome time and time again.
‘It is important to us to highlight these issues as an organisation that champions the voice of people with these experiences. In sharing their stories, the contributors to Humans of Scotland have played a vital part in growing our understanding of what it means to face and cope with adversity.
‘It is of utmost importance to us that the book was made accessible and we’re very proud of the partnership with Royal Blind that has brought this to life. Now the stories will be read by a wider audience, further raising awareness of the issues and topics tackled.’
In her foreword, Nicola Sturgeon says: ‘In reading this collection, I was touched by the candid nature of the different pieces. By sharing their innermost thoughts and feelings, each contributor has demonstrated a huge amount of bravery – as well as great generosity. They’ve given us a valuable insight into lives and experiences we might never know.’
Containing the stories of 30 Scots, the book also features the story of Amanda Kopel, wife of footballer Frank Kopel. Amanda successfully campaigned for the introduction Frank’s Law – free personal care for those under 65 in Scotland – as a result of her family’s experiences following Frank’s early dementia diagnosis. Her story tells of having to sell a prized family possession to pay for Frank’s care.
Also included is a story from Clutha disaster survivor, Michael Byrne, whose traumatic experiences have resulted in him living with and managing Complex Post Traumatic Stress Disorder. Melanie McLean talks of trying to care for her eight-month old baby while coping with debilitating arthritis and Imran Akhtar tells his story of sight loss and his journey to how he lives today.
Imran said: ‘I was a post office manager at the time, and I was just standing at work one day and the sight in one eye just went. No warning, no pain, no nothing. I finished my shift and thought it might get better. The next day I went to the hospital and they said my retina had detached. They don’t know why it happened to this day.
‘I was going in for my third operation and I noticed a little speck in my other eye. They said that retina has detached as well. I asked when I could get back to driving and they said it’s never going to happen. In the waiting room I just started crying. I wasn’t prepared for it, I wasn’t expecting it. I thought I would just go back to my old life. I went home and stayed in bed for two weeks.
‘Eventually I managed to pick myself up and went to the RNIB and they said they could help me find a job. I started volunteering and eventually a full-time job came up. Luckily, I got it. That came to an end and now I work for Access to Work. I go out and see people with sight loss, hearing loss and dyslexia to offer help, support and advice. I feel like I’ve come full circle. I’m helping people who were in my position.
‘The most amazing moment is when I’m seeing someone with sight loss and they see my white cane. Their mentality changes when they see somebody with sight loss doing this type of job. When I see the figures for people with disability in work it’s heart breaking. They just need a little bit of support.
‘It sounds weird to say, but losing my sight was one of the most positive experiences because now I’m helping people in a real way. Before that I was just plodding along rather than being in this great position. My confidence is sky high. If you’re facing sight loss and you are feeling really low, just know there is help and support out there. You have to reach out to people and, I assure you, they will reach back and help you.’
Another of the contributors is Christine Moroney, who is blind.
She said: ‘I think maybe the greatest challenge was getting out in the world and being able to live like a sighted person, being able to do what everyone else can do. I lost my sight when I was five so I grew up not being able to see. I had to go to a boarding school and we had to become independent. From a very early age we had to do things for ourselves. I think that helped to give me confidence.
‘So the phone rang and I thought “who’s going to try to sell me something’? It was the Bank of Scotland to say that I had been selected as a possible torch bearer for the 2012 Olympics, but I had to keep it secret. Sure enough I got another phone call to say “you’re going to carry the torch”. I got to feel the shape of the torch and we were shown how we would need to carry it. It’s quite heavy and you have to hold it up.
‘Because I was registered blind my daughter was allowed to walk with me when I was carrying the torch and she was six months pregnant at the time, so really there were three generations of the one family carrying the torch. It was inclusive, I was just one other person. I wasn’t any ifferent to anybody else.
‘The lady from Russia just held her torch to mine, lit it and the man from Alloa took the light from my torch and then he went on his way. When it was the Forth Valley Sensory Centre’s 10th anniversary we made a collage. On one of the squares, a lady helped me to make a replica of the torch, so that’s on the wall here in the Sensory Centre.’
The braille book and audio book can be accessed online at www.royalblind.org or by contacting the Scottish Braille Press on 0131 662 4445.