Luminate are health and wellness coaches for individuals and companies looking to improve personal wellbeing through coaching and training. Helping individuals achieve success and overcome challenges they face. Supporting organisations to develop fulfilled employees.
Did you know … it can cost up to £30,000 to recruit a new member of staff in the UK, including the cost of loss recruiting and training a new employee and the loss of productivity while a replacement employee gets up to speed? It is believed that employees with disabilities will stay with you longer than most, helping you to reduce your recruitment costs.
In business, the cost of recruitment can be a huge burden on your budget. Smart companies know that it pays to retain knowledge and cut back on staff churn. Apart from anything else, finding the right talent is challenging and nobody wants to lose valued members of staff who could be supported.
In general, people with disabilities tend to stay in jobs for longer. Keeping a disabled person in their role could also result in cost benefits of up to 2.5 times the investment required. Remember – every member of your staff could develop a disability, so it pays to be informed about best practice.
When you’re looking at the best ways to keep any members of your team who have any sort of disability, there are a number of issues that you need to consider:
Your business needs to provide for employees with disabilities, so they don’t have obstacles in their way. For someone with a visual impairment, this may mean covering extra transport costs or ensuring company memos are provided in appropriate formats. Some staff may need support for day-to-day activities and it’s important that you consider this in the budget you allocate to running your business.
Training other staff can also be a very good way of helping people with physical or mental disabilities at work. If their colleagues can support them with mobility and bear their needs in mind, it can ensure a more welcoming and informed approach throughout the whole business.
Mental Health Conditions
The Mental Health Foundation says that 1 in 4 people struggle with mental health conditions each year. Sometimes, the pressure of work can aggravate anxiety conditions and stress can exacerbate depression. If any members of your staff are struggling to cope, they may have to eventually leave their job to regain control.
A supportive environment is essential and provision for mental health support should be part of your company culture. Team leaders need to be encouraged to look for the signs of mental health and respond proactively if a staff member approaches them for help. Even something small, like a different shift pattern, can be enough to lighten the load. That’s why you could support the move towards agile working patterns, which often involve allowing employees to work from home. Some creative employers allow their people to bring their dogs to work from time to time, which can be a great stress buster, if it’s appropriate in your workplace.
Focusing on Your People
Every member of your staff is an individual with individual needs and those needs may change over time. People with disabilities have the ability to work as productively as anyone else and should always be provided with the tools they need to do so.
When people with disabilities are properly supported, studies show that they are the most committed, punctual and dedicated staff in the entire workforce. The Leonard Cheshire Disability Employers Survey, carried out in 2018, asked some interesting questions and below are some of the results:
Q: When deciding whether or not to employ someone, in what way, if at all, would a declared disability impact your choice?
Much less likely to employ: 8%
Slightly less likely to employ: 16%
Q: To what extent, if at all, do you find each of these factors to be a major barrier to employing disabled people?
The practicalities of making workplace adjustment: 21%
The cost of making workplace adjustments: 22%
Q: Which of the following reasons, if any, would affect your decision to employ someone with a declared disability?
I would be concerned they will struggle to do the job: 33%
It would be an additional cost to the organisation: 22%
I would be concerned they would be off work more often than those without a disability: 19%
They may not be as productive as non-disabled employees: 18%
Managers and supervisors don’t know how to support disabled people: 10%
They won’t fit in with the organisation: 6%
Q: Which of the following benefits do you currently offer at your organisation, and/or would you like to offer in the future?
Part-time working hours: 56%
Flexible working hours (e.g. different start times, shorter hours): 53%
Time off work to attend disability-related medical appointments/treatment: 50%
Flexible role duties that take into account the disability (e.g. no late nights, long-distance travel or physically intensive work): 38%
Additional breaks during the working day: 37%
Remember also that legally, your business cannot discriminate against a disabled person and employers must make reasonable adjustments in the workplace so they can do their job. The law applies to any person who has a physical or mental impairment, regardless of whether it’s invisible or visible, as long as it has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities.
It’s up to you to put measures in place so that your workplace is welcoming and supportive. If you need any help with putting the right measures in place, do get in touch and I can give you some advice on how best to do it.
A few years ago, as Chair of the Disabled Staff Association for a central government department, I arranged for Alistair Campbell to come in and give a talk about his experiences with mental health. I clearly remember one of the things he said was that a recent (at that time) piece of research from a Norwegian University had been published which had identified the areas of medicine professionals would most prefer to practice in. Top of the list were childhood cancers and heart transplants. Not really surprising. Vying for bottom place of the list and therefore the ones that the majority of medical practitioners would really prefer not to touch, even with the proverbial bargepole, were mental health and HIV/AIDS. Perhaps even less surprising but still disappointing. These still remain the most stigmatised of disabilities.
My personal experiences of mental health and HIV are intertwined. Being diagnosed with HIV and AIDS some 13 years ago sent me into a downward mental spiral, including a failed attempt to end it all. Both conditions are now well controlled. Both conditions are hugely stigmatised, probably mostly due to fear. Fear stemming from ignorance. Ignorance stemming from lack of information. Lack of information stemming from unwillingness to learn. Unwillingness to learn stemming from fear. And so the cycle continues until someone is prepared to break through it.
I learned long ago that the best response to stigma is education. By informing those that respond negatively to the declaration of my HIV+ status that the risk of them becoming infected simply by being in my presence is zero, and having the scientific data to back that up, I can counteract the mythology that still surrounds the condition. The HIV+ people I work with tell me that the question they are most frequently asked before they decide to share their status is “Are you clean”. To which the answer must of course be ‘Well I shower at least once a day and always scrub behind my ears”. How else would you define clean? And by being HIV+ does that mean that one must therefore somehow be ‘unclean’? Was this not the warning cry that lepers used to shout as they rang their bell when mingling with the uninfected public? Hardly surprising when a quick search of the internet brought up the following from a French website:
Recently, the close family of a deceased person was not given immediate access to the body, because medical personnel, who suspected HIV infection, refused to authorize transfer of the cadaver to the funeral home. In order to justify retaining the body for several hours, they cited regulations that forbid embalming practices if the person has died due to HIV infection. (http://www.cns.sante.fr/spip.php?article319).
Even in death stigma and discrimination still rear their ugly heads. And even amongst those who are trained to help and support us. So many times I hear of dentists who refuse to treat HIV+ patients or who, as happened to me, book an appointment for that patient at the end of a surgery so that the place can be completely sterilised after the treatment has been completed (not only is this illegal but it does make you wonder about the dentist’s clinical processes and other patients with undeclared diseases) or the nurse who triple gloves herself before taking your bloods.
No wonder then that many living with the condition choose to not publicly declare it. And that has to be their choice. It is a personal decision. I chose to not live in shadows. Coming out once as a gay man was difficult enough. You would have thought that that knowledge would have stood me in good stead for coming out a second time as a person living with HIV but the experience was very different. The public face of homosexuality is now more acceptable than that of a stigmatised, mostly invisible condition. A condition which traverses three of the most taboo of subjects in British society: sex, homosexuality and death, cannot ever be a socially acceptable one. Only by those few individuals who are able to speak out, speak up, speak for and on behalf of others who are, for what ever reason, less able to do so, will the condition become more normalised. I chose to do this by writing and publishing Ripples from the Edge of Life, where thirteen other people joined me in sharing their stories of their HIV diagnosis. Not all of those people chose to do so using their real name. That is their choice.
One day, perhaps not in my lifetime, those living with HIV/AIDS will be easily able to openly discuss their situation without fear of reprisal or rejection. That day may still be far off, but I can still live in hope and, in my own small corner wave my personal flag of tolerance, understanding and acceptance. What can you do to help me raise that flag high?
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!
Disabled people are significantly more likely to experience unfair treatment at work than non-disabled people. In March 2013, over one fifth of the working age population in the UK had a disability, and one in six people who become disabled while in work lost their job during the first year after becoming disabled. So, it’s perhaps no surprise that Employment Tribunals in the year ending 2014 awarded payments to 130 disability discrimination cases. The maximum award was £236,922, with an average award of £14,502. The financial motivation for employers to avoid disability tribunals is great.
And while that’s a heck of a lot of money, it doesn’t include the time and effort involved, and the huge emotional price tag, for all concerned. Money, time and pain which could have been avoided if disability mediation had taken place
Disability mediation does take place, but it’s done by mediators who have had no specific training for this type of dispute as the training does not yet exist. This is not good for the parties, for the employers, for the mediators, or for the mediating profession.
Due to the very nature of the issues at stake, disability mediation differs from other types of mediation. Disabled people sometimes feel unconfident in speaking about their disability or are unaware of their legal rights. Employers are sometimes concerned about how to engage in a disability conversation. And so, the dialogue never takes place. Result? Frustration on all sides. Potentially a poor performing employee. And a slippery slope downhill to a tribunal.
As a trained mediator, I know that it doesn’t need to be like this. Trained mediators can help to engage the parties in that all-important conversation before the situation even approaches the top of the slippery slope.
Some mediators may already be trained and working in SEN, but mediation for adults in the workplace is a very different context. It requires an understanding of disability, and what that means to the individual disabled person, it needs knowledge of legislation surrounding disability in the workplace, and it needs the skill to enable open conversations about disability to take place.
And the need for trained disability mediators is growing as increasing numbers of people with disabilities are having to seek employment; as the working population ages, the number of workers with acquired disabilities will inevitably rise. Having the skills and knowledge to mediate cases involving disability issues, and to mediate with people who have disabilities, is becoming more important than ever for mediators.
I am on the Steering Group of the College of Mediators, working to establish standards for disability mediation. So far we have drafted the skills and knowledge requirements specific to disability mediation. We have presented this to the annual conference of the College and to the Scottish and Midlands Mediation Networks. We shall be presenting these findings to the College’s Professional Standards Committee in February.
What are you doing to ensure that the mediators you use in your workplace have the expertise to ensure that they will facilitate a positive result for the person with the disability and for your organisation?
World AIDS Day 2018 was the 30th anniversary of the event and marked a year of significant developments in the treatment of the condition. To raise more awareness of the issue, I went on a radio tour of the UK. I was interviewed by 11 different radio stations on 30 November – luckily I could do all the interviews from the comfort of one office in London, rather than having to visit each studio! I also appeared live on Sky New Sunrise bright and early on the morning of 1 December. To round it all off, I was interviewed on TalkRADIO in London on 2 December.
Before setting up this whirlwind tour of Britain, we carried out a survey to find out current attitudes to HIV/AIDS. We spoke to over 2000 people all around the country, with a mix of ages, genders and relationship statuses. The statistics that we pulled together make for interesting and sometimes scary reading and I was able to discuss them in more detail in the interviews.
A shocking 74% of those surveyed do not personally worry about contracting HIV themselves
17% of them admit that they don’t know the difference between AIDS and HIV, with 13% believing that HIV is the result of AIDS, rather than the other way around
12% of those questioned wrongly believe that the diagnosis is a death sentence.
For me, this makes for worrying reading. HIV and AIDS have now been around for more than 35 years. This year saw confirmation that the virus in people who are on effective treatment is so suppressed it cannot be detected in the blood stream, thus rendering that person uninfectious. And on 31 November Public Health England (PHE)** announced that the UK is one of the first countries to reach the UN goal of 90:90:90 (90% of the HIV+ population has been diagnosed, 90% of them are on treatment and 90% of them are undetectable). So how is it that so many people are still unaware of the truth? Why do so many people still associate past stereotypes to AIDS and HIV?
While it was heartening to read in the survey that 60% of those questioned know that HIV is a virus that can lead to AIDS if left untreated, there were still 10% of the respondents who think that AIDS and HIV are the same thing.
“There is no cure for HIV/AIDS”
This is what only 38% of the respondents correctly told us. Over half believe that is it caused by unprotected sex, with around a third of those surveyed thinking that is it most common in gay men or in drug users. Did you know that women can contract HIV and that you don’t have to ever have used drugs to be infected? Indeed, the latest statistics from PHE showed that 770 heterosexual men and 1040 women were diagnosed in the UK in 2017 alongside 2330 gay or bisexual men.
38% of those we spoke to in the survey told us that they think that HIV is more common in the Third World and 3% believe that it is a thing of the past. Sadly, neither of these is true. According to the UN Russia has one of the fastest growing HIV/AIDS epidemics in the world.
“If you discovered a friend had been diagnosed with AIDS, how would this impact your relationship?”
When we asked this question, here’s what we were told:
It wouldn’t affect my relationship at all
It would improve my relationship
I wouldn’t be friends with them anymore
I’d distance myself from them
So nearly 1 in 5 of the survey respondents would not wish to maintain a friendship with someone who told them they were HIV+. I find that shocking and saddening. Many people who contract HIV are still very scared to tell their friends and relations because of how they think they will be treated. I urge you to think carefully about how you would react to this news from someone you know. How would you want others to react if you wanted to tell them that you were HIV+?
In our survey we asked people what they thought U=U means.
U=U actually means Undetectable = Uninfectious but less than half of the respondents knew this important piece of information.
This month I have also been out and about as a Positive Voices speaker for Terrence Higgins Trust. I have spoken in universities as far afield as Coventry and London, to large financial institutions from Harrogate to Canary Wharf and supermarkets from Holborn to Highgate. It’s been a blast!
I truly hope that my survey and radio and TV appearances have done something to raise more awareness of the difficulties faced by those living with HIV/AIDS. Don’t leave it another year before you think about it again. If you want to discuss any of the issues raised in this newsletter with me, please do get in touch.
* These statistics come from our research. Please contact me if you would like to know about the survey that we carried out.
** Progress towards ending the HIV epidemic in the United Kingdom, 2018 Report, Public Health England.
Whether a disability is a condition from birth, or one that begins later in life, the one certainty is that it will be challenging. If the disability can’t be seen, it can be even tougher to cope day to day.
Chronic pain conditions, mental health issues and degenerative diseases can be troublesome when out and about, since they stop the person from getting on with things and potentially achieving a desired quality of life. What’s more, it’s hard to cope when other people don’t – or can’t – appreciate what you are going through.
If you have an invisible disability and need assistance and guidance, don’t feel you are alone. Here are some ways to help you cope and gain inner strength.
Embrace help and support
Whatever your condition or the challenges you are facing, there are others out there who may well be in the same or similar position. Support groups and individuals with the same condition will be able to offer advice and be there for you. Many disabilities are supported by a Charity specialising in supporting individuals living with that condition.
Perhaps you have diabetes, epilepsy or Chronic Fatigue Syndrome; like other conditions they all can make you feel a little isolated if you don’t know anyone else with the same issues as you, especially if you’ve only recently been diagnosed.
There are lots of support groups you can join, either face to face or through online groups or forums. These are often led by people living with the same condition. There, you’ll be warmly welcomed and will find others you can talk to and share experiences.
Using these resources is a great way to express your frustration and get a caring shoulder to lean on.
Find experts who can help and guide
As you cope with an invisible disability, you’ll meet a number of specialists; doctors, nurses, counsellors for example. Once you’ve been diagnosed, don’t think you can’t talk to them about how you’re feeling or ask for help and assistance with your daily life. Whatever your needs, there will be someone with a medical background who can signpost you or explain the reasons you feel the way you do.
Sometimes with invisible disabilities comes the situation where working becomes difficult – even if your employer is supportive and has put in place reasonable adjustments. If this happens and it leads to issues such as financial strains, talk to an advisor with an organisation such as the Citizens Advice Bureau. They can help with contacting creditors and can also point you in the right direction for benefits and grants you may be entitled to. Stability is all part of your wellbeing, and if you have debt problems, it’ll only add to your strain. Alternatively many large organisations provide an Employee Assistance Programme for their staff. Check out to see if you have one in place.
Don’t feel you have to cope alone
The most important piece of advice few can offer is this: never struggle alone.
If you feel you would benefit from one to one coaching on how to approach get the most out of life, speak to us, we’re dedicated to helping people with all kinds of disabilities, and we can support you as you learn to cope with your condition.
Did you know … a story is defined as an account of imaginary or real people and events told for entertainment; or a report of an item of news in a newspaper, magazine or broadcast.
Stories have the ability to empower both the story teller and the people who hear the story. How does this work? How can you become empowered through telling your story? How can you empower other people through hearing your story?
Recently I’ve been asked to do a lot of storytelling. This tradition goes back to the beginning of time, so I thought that I would use this issue of Search Light to share how you too can use the power of telling stories.
People relate to stories much more than they relate to statistics, facts and figures. Why? Because human beings are irrational and emotional; we don’t fit into boxes of standard shapes and sizes. We like to hear stories because we can relate to different parts of them. We can compare ourselves to other people’s stories, events and situations, to see how we’re doing in relation to them and to give ourselves points of reference in our lives.
Stories can be used to impact on people who you want to affect or influence. You can flex and craft a specific story to have a certain impact on a specific individual or group of people.
Every life has a story. Every story has a message. And I am the best person to tell that story.
How do you create your story? How do you make sure that it has the outcome you desire for each situation?
Decide on the outcome that you want. This could be to inspire people in the audience to give you their business card, book you for a talk, or take another action that you want them to take.
Work out which specific parts of your story will help you to achieve your outcome. Which elements of which of your stories can you use? You don’t need to tell the whole of your life story every time. It’s important to select the parts that the audience can relate to, that can help them to visualise the story and the outcome.
Incidentally, I have heard that some people with HIV or AIDS have found it quite difficult to read my book, because of how much they can relate to my story and the other narratives included in the book. It’s too difficult for them. However, my book was not written with other people living with HIV or AIDS in mind. I wrote it to help other people understand how to respond to people living with AIDS or HIV.
When you tell stories through books it can be harder to control the impact they may have, as you won’t always know who has picked up your book to read. When you’re planning to tell your story to a live audience, make sure that you research your audience so you know who will be there. Then you can craft your story with them in mind.
Think about the body of your story:
The words are so important. Think very carefully about the words you want to use as they can affect the impact of your story. Write a script if it helps, but don’t try to learn it verbatim, unless you’re giving a very short talk (not more than 5 minutes.) But do learn some of your key phrases, to make sure that the impact lands properly.
When you’re telling your story to a live audience, make sure that you pause and gauge the reaction of the people listening to you. If they are laughing, allow them to laugh before you go on. If you want to let a point sink in, use a longer pause ……….. to give your audience time to think.
Consider the journey that you want to take people on with your journey. Plan the route so that they know where you’re taking them and where they’ve been.
Don’t be afraid of emotions and know how to deal with your own emotions when telling your story. Be brave and don’t be afraid to show the impact that your story has had on you, but don’t turn it into a sob story.
4. Listen to other people’s stories. Everyone has a story and you can find inspiration on the street every day. Before I became ill, I used to pass the same Big Issue vendor every day on my way to work. I never stopped to speak to him or buy a copy of the magazine. When I finally returned to work, as I was recovering, one day I took the time to speak to the vendor, who told me that his name was Steve. He was homeless because he’d suffered from cancer and had lost everything. He slept in a doorway and all his possessions fitted into a single carrier bag and yet Steve was always friendly, cheerful and clean. He was always happy to chat and positive – even on the day that his shoes had been stolen overnight. Steve’s pride and dignity wouldn’t allow him to accept my offer of buying him a new pair of shoes, but he did accept a second hand pair from one of my colleagues at work. I don’t pass Steve’s pitch every day anymore, when I did see him, Steve was still smiling. Behind every smile there’s a story!
End your story with a bang and not with a whimper. It doesn’t need to be a loud bang – it could be that you want to send your audience away with something powerful to reflect on, or a specific action for them to take. Make it clear what you want them to do, say or think and you story will have a much greater impact on your audience.
How can you use stories to empower yourself and the people who hear your stories?
“You can be gorgeous at thirty, charming at forty, and irresistible for the rest of your life.” So said Coco Chanel.
I’ve had another birthday this year. Not an unusual occurrence; it happens once a year. Most people experience the same thing. According to the World Population Clock I probably share this birthday with about 20,535,940 other people. That’s a lot of people! So I’m not alone. But perhaps what is a little bit more special about my birthday to me is that I shouldn’t be here. As I count down (or up?) to the fast approaching next big one, each birthday becomes more of a time for reflection than for a merry round of social activities.
I shouldn’t be here because when I was given a surprise diagnosis of HIV and AIDS nearly twelve years ago, I was told I had two weeks to live. Being hit with that kind of information tends to stop you in your tracks. It stopped me in mine. It makes you realise the fragility of life. The shortness of it. The importance of it. And yet, at the same time, how unimportant it is in the grand scheme of things. It only becomes important if we can make something worthwhile out of it. Leave some kind of legacy. For some, their children may be their legacy. I don’t have children. So, for me, my legacy will be the positive impact that I have on others. I don’t want my name in lights but just for one person at least to remember me by saying “yep, that Roland really helped me”. Hopefully not too much to ask.
How many of us are given the opportunity of that moment of clarity to think about what your life really means? To rise above the daily drudgery and evaluate the purpose of being here? To simply wonder why? And in the moment of calm stillness to understand what it means to be here, to be alive. I feel very lucky, and very grateful, to have been offered that opportunity. And now I will make the most of it.
How other people think about you and act towards you can have a huge impact on how you view yourself and your role in society. An occasional moment of rudeness or being ignored may be a minor inconvenience or annoyance. But the more it happens, the more the impact adds up. And what if the negative attitudes and behaviours you experienced were not recognised by large numbers of people around you as being a problem? Despite progress made over the last two decades, this is still the case for disabled people in Britain today.
A recent research study by Scope has identified a disability perception gap, so I thought that I would share with you some of the key points of the findings in this blog. According to this report, the disability perception gap is the difference between the attitudes of non-disabled people and the reality of disabled people’s experiences in the UK.
For disabled people, being able to do the things we want to do, and being seen as more than our condition or impairment is crucial to being able to live the life we choose. Having a sense of self-worth and a purpose in life is fundamental to that – being able to work, socialise and travel as we would like, without encountering abuse, discrimination, or disregard.
A lack of understanding of disability and negative attitudes towards disabled people is still far too common in our society, and present one of the most significant barriers to disabled people living the lives they choose.
Attitudes and prejudicial behaviour can take a variety of forms. Whether a person with a disability doesn’t get a job because the manager thinks they’d be less productive than a non-disabled person, or the disabled person doesn’t want to use public transport because of other passengers’ comments and behaviour, prejudice can play a tangible role in reducing their everyday quality of life.
This problem has been long documented by Scope and others, but the pace of change has been far too slow. We need the government and cultural sectors to take the lead in addressing how disabled people can be more visible and better supported in public life. The time for concerted action is long overdue.
Negative attitudes and prejudice remain a major problem for disabled people – 32% of the disabled respondents to the survey said that there is a lot of prejudice against disabled people in Britain. Non-disabled people gave a very different response, with just 22% agreeing there is a lot of prejudice.
This represents a significant perception gap between disabled and non-disabled people. This could be because non-disabled people are simply unaware of the levels of prejudice faced by disabled people, and potentially aren’t conscious of their own prejudicial attitudes towards disabled people.
It was been found that disabled people frequently encounter small acts of negative behaviour such as:
wheelchair users finding other people let doors swing back on them rather than waiting to hold the door open
people speaking to a friend or carer and talking in the third person, rather than to the disabled person directly
service staff in shops and restaurants ignoring disabled customers
‘sighs’ and ‘tuts’ from others.
Any one of these incidents by themselves may not be seen by a non-disabled person as much more than a small social faux pas, but for disabled people they can add up to a constant background of negative attitudes and behaviours which present a significant barrier to living the lives they choose.
One of the clearest illustrations of where peoples’ perceptions differ from reality is around the number of disabled people in the UK. When asked what percentage of the population are disabled, 60% of respondents to the survey said they thought it was 20% or less, with 41% estimating the level at 10% or less. The actual level is 22%. The scale of the perception gap towards disabled people is concerning and indicates a fundamental misunderstanding of what constitutes disability.
Closing the Gap
What can you do to narrow the disability perception gap? You can read Scope’s report here and in a future blog we’ll look at what else you can do, whether you are disabled or non-disabled.
Disability. Is it my new dirty word? Dis-abled? Less able? Less competent? Can’t do the same as everybody else? It’s a scary word, both for the person labelled as disabled and for those working around them. The whole disabled vocabulary is fraught.
I ‘acquired’ my disability over 12 years ago. I went online shopping and there it was. Right colour, right size, next day delivery. No returns policy but how could I resist? And having acquired it I decided that I would ‘declare’ it. Yes, I would stand up on the rooftops, armed with a megaphone and shout out to the world “Here I am, look at me, I’m disabled!” I have ‘disclosed’ my status because, you see, it was such a big secret.
Moreover, my disability is ‘invisible’. It isn’t tattooed across my forehead. You wouldn’t even know unless I told you. And yet, inside of me, there’s a little voice screaming “I want to talk to you about it. I want you to talk to me about it”. But how will you know, unless I tell you? Legally, I’m not obliged. Morally, I do feel obliged. Not just for me. Not just for you. But for all those others who have that same voice inside them but are too scared to let it out.
It’s an eggshell environment. Tread carefully. You never know who might be listening and how they might react. I don’t (normally!) go up to people and introduce myself “Hello, I’m Roland and I’m HIV+ and I’m an AIDS survivor”. My disability is a part of me. A part I cannot escape. We are inextricably linked, HIV and me. But it’s not ALL of me. Get to know me first. Then get to know my disability.
As a colleague, understand that my diagnosis had a profound effect on my view of the world, my view of my life. When you are given two weeks to live something changes. It has to change. My map of the world shifted – dramatically. It is undoubtedly very different to your map. I know that. I realise that. But do you?
As my manager, understand that there are good days and not so good days. There are also downright bad days. I know I have a job to do and I will do it, to the very best of my ability. But my map of the world has shifted. And it is undoubtedly very different to yours.
Do you want me to talk to you about ‘this’? Are you ready for it? But ‘this’ is such a personal thing. How do I find the words? But if I don’t tell you, how do you know?
If we don’t talk, we cannot understand. And if we cannot understand, we fail. I don’t want us to fail. Above all else, I don’t want us to fail.
We can learn to talk. It may require a new vocabulary. It may need us to be more open – more honest, more vulnerable. But we can do it. I know we can.
So, talk to me. Please. I promise I will talk to you. And I always keep my promises. Always.
If you want to talk, or you help in knowing how to talk about your disability or someone else’s, call me on 07752 518 925 or click here to email me.