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I was flabbergasted when I learned that I had been shortlisted for the 2019 National Diversity Awards (NDA). https://nationaldiversityawards.co.uk/

To be one of 124 nominees after a record number of nearly 30,000 people entered, is no small feat.

I had long been campaigning for disability rights after beating the odds to recover from a late diagnosis of HIV back in 2006.  I had been given just two weeks to live; this was a turning point in my life, to say the least.

It spurred me on to set up my own company, Luminate, as a Disability Development Consultant, to raise awareness of HIV and hidden disabilities.

I felt both delighted and humbled to have received a nomination for the Positive Role Model Award for Disability.

Hidden disabilities

While I am able-bodied, I have Progressive Multifocal Leukoencephalopathy (PML), a degenerative disease of the brain that impairs cognitive and motor functions.

PML usually affects people in the late stages of acquired immunodeficiency syndrome (AIDS) and has a five to ten per cent survival rate.

I also have encephalopathy, which has symptoms of dementia, affecting my concentration, coordination, memory and causes some difficulties with speech.

I was diagnosed with Post Traumatic Stress Disorder (PTSD) and dyspraxia, a coordination disorder, and prosopagnosia (more commonly known as face blindness) as a direct consequence of the encephalopathy. I have since been diagnosed with HIV-induced osteoarthritis and osteoporosis.

HIV is a hidden disability. I have personally faced discrimination because of my HIV diagnosis and those who ‘come out’ face the very real threat of ostracism and verbal and physical attacks. In the same week as the National Diversity Awards ceremony, the former Welsh rugby player, Gareth Thomas revealed that he too is HIV+ and that he had been forced to make his status public after being threatened with blackmail by a national newspaper.

I wanted to speak out for those who may be more vulnerable – letting people know ‘this is who I am and because I am on effective medication I cannot pass on the infection’.”

Ripples and recognition

 I decided to share my experience at talks, in the press and in my book, Ripples: From the Edge of Life. The book also shares the experiences of other people living with HIV in the UK.

It was amazing then to have my work recognised by entering the finals for such a prestigious award.  I’m very grateful to everyone who took the time to vote for me.

I got to read some of the moving words of those who nominated me, which touched me deeply. We often do not fully appreciate the impact we have on other people.

Here is a snippet of these comments:

Wow what a fantastic human being! Roland is fighting such an important fight. There is still so much misunderstanding and lack of education when it comes to HIV/AIDS which creates an on-going stigma. Medicine has moved on so far since the 80’s, yet public perception and understanding has barely changed. I applaud Roland for all he is doing to help raise awareness and understanding.

 Roland is inspirational. He has climbed some very high mountains during the journey to where he is today. His zest for life is infectious and he has a wonderfully dry sense of humour. He told me one day that after his diagnosis, his intention was to do something positive every day and make every day count. He has certainly done that in spades…

 I have known Roland for several years now, and during that time he has continued to show determination to remove the stigma around HIV. His own personal circumstances and courage to fight his illness have shown his strength over the years. He is a fantastic Role Model in Disability for the work he has done in tackling HIV stigma and for publishing his successful book ‘Ripples: From the Edge of Life.’

 When I read these comments, it brought a tear to my eye. It also reminded me that the work I am a doing makes a difference and is worthwhile.

A night to remember

 The event was held at at a beautifully lit Liverpool Cathedral. I got to meet the other finalists, who have all done fantastic work.

There was such a mix of people but with the one aim – to celebrate diversity. It showed how powerful we can be when we all come together.

The finalists included a host of activists and campaigners, including a reformed gangster and junior bake off star.

It was also a very glamorous affair, with champagne, canapés and beautifully dressed individuals. The entertainment was also incredible, with a mix of songs and dance.

It was filmed by ITV unobtrusively, which I later watched back, and there was a range of touching, uplifting and witty speeches.

I went with my partner, Richard, and his sister, Sonia, who come from Barbados. Coincidentally, there were several references to the Caribbean island, including when Paul Sesay, founder and CEO of the National Diversity Awards, talked about making a trip out there. Every time ‘Barbados’ was mentioned, we cheered. Richard and Sonia enjoyed the night immensely.

One of the most memorable people for me was Codilia Gapare (https://www.eylure.com/uk/c-lash/), an entrepreneurial breast cancer survivor, who has revolutionised the beauty industry by creating the first ever false lashes range for chemotherapy patients. I just thought to myself ‘I never would have thought of that. How amazing is that?’

It was a wonderful evening and one I never thought I’d get to experience in my life. I will carry the memory with me for as long as I live.

Deserving winners.

 I think everybody who made it to the shortlist should be proud of their accomplishments. It was exciting to be part of such a prestigious party – with so many inspiring role models and young people, set to lead the next generation.

Those who won thoroughly deserved their award. Myles Sketchley (https://www.strongbones.org.uk/youth-ambassadors/ ) won in our category and it was amazing to see how he had overcome so many obstacles and campaigned for young people with disabilities.

Myles was born with Schizencephaly, a rare brain defect that caused cerebral palsy, scoliosis, kyphosis and high muscle tone resulting in only being able to use one arm. Wheelchair user Myles is also partially sighted. He is the Youth Ambassador of Strongbones, a charity helping families and children with serious conditions of the bone.

He has also compiled a guide to making attractions more accessible. He is truly inspirational.

Benefits

 This was a high profile event, which is nationally recognised. I have featured in the press following my nomination and it gives my work more credibility.

I also include the logo on my website and in my email signature, which gets people asking questions. It’s a great conversation opener and gives me many opportunities to talk about hidden disabilities.

I would recommend anyone whose work focuses on diversity to get involved or apply to take part in these awards. I am so grateful I did.

Bright future

 This event has spurred me on to expand my work in the field of HIV awareness and disability rights.

I have worked with people who have been attacked and ostracised because they have the virus and believe it is time to end the stigma and fear surrounding HIV and AIDS.

In my work at Luminate, I help employers in various industries to create an inclusive workforce and for their employees to develop confidence in their role.

I also support a number of charities and community projects, such as the Terrence Higgins’ Trust (THT) Positive Voices, where I speak about HIV at schools, colleges and workplaces in order to tackle existing stereotypes.

We will all face some obstacles and challenges in our life and at work. Knowing we can make a difference is the motivation which keeps us going in our work to combat injustice and discrimination.

 

 

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