Did you know … 20% of the UK population has a disability, but there are only around 1.2 million wheelchair users in the UK, which is just 2% of people in the UK. And yet what is the internationally recognised symbol for disability?
I have a cloak of invisibility because I have an invisible disability. Some call them hidden disabilities but to me that smacks too much of something you choose to keep secret, closely guarded, hidden away in the back of a cupboard. I don’t choose to hide my disability. It’s just that, most of the time, unless I decided to share that information with you, you wouldn’t know. You couldn’t guess. To all outward appearances I look ‘normal’. (Note the inverted commas. The debate about what is ‘normal’ could run long and loose and I have asked ‘What is normal anyway?’ in a previous newsletter.)
In comparison to those who have a visible disability some may say that having an invisible disability is an enviable position to be in. But is it? Comparison is invidious. Every disabled person’s experience of their disability is different to another person who may have the same disability. So I am not going to compare myself to a visibly disabled person. But let me put this to you. My hidden disability affects me in different ways at different times. Some days I may be on top of the world. Other days I am in pain, physical and mental. I am struck by fatigue. I have adverse reactions to the medication I have to take. Sometimes the flesh is willing but the spirit is weak. Sometimes the spirit longs for adventure but the flesh says ‘No, I just can’t do it’. My abilities will be reduced. My get up and go just refuses to get up. But to you I just look the same every day. On those dark days my behaviour may change. I can see the look in your eyes that says “Why is Roland behaving like this? He isn’t his normal self.” (There’s that word again!) Then I feel I have to justify myself. I have to explain. Again. And I have to anticipate and manage your reactions and responses. Over the years I have developed strategies and mechanisms to enable me to cope with this.
Around 20% of the UK population has a disability. However, ‘the majority of impairments are not visible; there are only around 1.2 million wheelchair users in the UK, roughly 2% of UK population.’ (Papworth Trust: Disability Facts and Figures in the United Kingdom, 2017.) There is some not-so-subtle irony in the fact that the widely recognised symbol for disability is a person in a wheelchair. On a daily basis you can expect to meet many many more people who are managing their invisible disability than you would people with a disability that can be clearly seen. In the workplace, for access to education or in obtaining a service, those of us with invisible disabilities which require reasonable adjustments have created finely honed approaches that will succinctly and clearly explain the reasons why we are asking for those adjustments to be put in place. How many times are have I been met with disbelief or the (occasionally well-meant) ‘But you look absolutely fine’? How much better would it be if the response were ‘Let me try and understand how this feels for you’?
It is basic human nature to want to make mental shortcuts. So much information going into our brains, so many neurons zipping around trying to make sense of it all. One of those shortcuts is ‘If this person looks normal then obviously they must be normal.’ (There it is again!) My plea to you is to be aware of that assumption. Replace it with the assumption that everybody you meet may have some form of disability and so treat them accordingly. Try it next time you meet someone new. You may well be surprised.
Sometimes I may choose to remove my cloak of invisibility in order to achieve a specific purpose. Does that make me a duplicitous character or a hero fulfilling a quest? I would say neither. I’m just me. But I leave you to make your own decision on that one.
The Ripples are Spreading
Last year I commissioned a survey in the lead up to World AIDS Day 2018, to look at current attitudes to HIV and AIDS. Some of the results were really surprising. They are being written up by a PhD student and I will be adding my responses to the results. I will be able to tell you more about the results and the report in the next issue of Search Light.
I regularly deliver Wellbeing & Inclusion courses to a Local Authority close to me. It is a hugely stressful time to be a local authority employee, particularly for those working in social services. The feedback I have received on those workshops include comments like “Roland delivered this course excellently, making the topics engaging and thought provoking. His use of personal examples was particularly helpful in understanding the ‘reality’ of wellbeing and inclusion issues in the workplace.”
Another participant said “I thought Roland was absolutely brilliant; he was clear, consistent and very professional. His sense of humour was entertaining and his experiences added a brilliant undertone for the course, which made me really understand the importance of inclusion and wellbeing. Sharing personal experiences isn’t easy and he did it with dignity; well done Roland”.
I share these not so much to blow my own trumpet (well, OK, just a little bit) but more to demonstrate what an impact sharing stories can have.
Talking of sharing stories, the latest review of my book on Amazon comes with 5 stars and says “A view of life living with a chronic condition which is emotional and inspirational. I have been HIV positive for twenty three years, and thought I was immune to the emotional upheaval of a positive diagnosis, but this book tells the story of how difficult it has been, and still is, to learn that your life’s course has changed. It is wonderfully written, taking you into the life of the author, sharing with him the pain, worry, sadness, despair, and the positivity which came from his diagnosis. The personal stories of other positive people were so heartfelt and honest. ‘Ripples from the Edge of Life’ is powerful, honest and inspirational.”
By the time you read this newsletter, I will have appeared at a number of book signings and ‘meet the author’ events around the country, including the Polari Literary Salon at the Southbank, the Chiswick Literary Festival and the Birkbeck Institute for Social Research Sociology of Health Reading Group. The ripples keep spreading and I will continue touring the country, sharing my story. If you would like me to come and share my story in your part of the country, just let me know!