Parting is such sweet sorrow. Luminate has been a tremendously rewarding platform to work from. Projects like guiding organisations on adaptations for their disabled employees and preventing stigma; talking at events about my story, highlighting how HIV is not necessarily a death-sentence; speaking on topics like discrimination, resilience, overcoming a challenge, LGBTQ+ and more.
Plus, of course, Luminate helped me to promote my book – Ripples from the Edge of Life. It will still be available here, and there will be a fabulous new video explaining how Ripples came into being created by the Film Maker and Director, Adam Woods. So, do please head on over there and follow me on LinkedIn or Facebook if you don’t already.
Collaborative Groups and Memberships
Where would our businesses be without networking? They’ve certainly helped Luminate over the years. A few of the groups and associations I was a member of and that were particularly helpful or inspiring, and to which I need to say my thanks, include:
- Fabulous Network – I was a member of this friendly and collaborative group for many years
- PSA – Professional Speaking Association – a national organisation, I enjoyed delivering regional talks with the PSA
- RSA – Royal Society for the encouragement of Arts, Manufactures and Commerce – as a Fellow of the RSA, I helped to deliver the World AIDS Day conference in 2018
- IEDP – Institute of Equality & Diversity Professionals – I have the privileged position of being a member and Board Adviser
Highlights of the Past Five Years
With so many highlights, it’s been hard to whittle them down:
- I worked with Purple Space, the world’s only professional development hub for disability network leaders, created by the inspirational Kate Nash.
- The Social Mobility Foundation asked me to deliver annual Personal Impact Training for socially deprived young people, kindly hosted by the FCO (Foreign & Commonwealth Office).
- A few weeks ago, I was on a panel of experts fittingly called ‘Ask the Experts’, being a webinar about disability and inclusion. Called ‘4 Degrees of Disability’, it was hosted by Esi Hardy, Disability Inclusion Expert.
- In October 2018, I was asked to deliver a talk on diversity and inclusion week at Zuora, a technology solutions organisation. They bought 50 copies of Ripples from the Edge of Life and were the largest purchase I had in one order!
- The College of Mediators asked me to help create the standards for disability mediation.
- I did a tour! Two radio interview tours, in fact. One in May 2018 to promote Ripples from the Edge of Life, the other for World AIDS Day in December 2018 to create more HIV awareness. In fact, my HIV Awareness Survey stemmed from that radio tour.
- I was honoured to be a finalist in the National Diversity Awards 2019 as a role model for disability. The awards’ ceremony in the spectacular setting of Liverpool Cathedral is an occasion I shall never forget. This year’s ceremony has been postponed until February 2021.
- During 2019, I spent some time in Canada. There, I met with Deni, Chris and Lori of ACNS (AIDS Coalition of Nova Scotia). We had fascinating conversations, including contrasting the experiences of living with HIV in Canada and the UK. And I had the honour of meeting Joe Average, the well-known artist and HIV activist. Winning many awards and honours over the years, Joe was commissioned to design a new coin commemorating the 50th anniversary of the decriminalisation of homosexuality in Canada, and was invited to meet Prince Charles and Princess Diana during their Vancouver visit for Expo ’86.
- I was invited to become a Patron of Man Cove Wellbeing, founded by the amazing Owen Morgan after he created an introductory video to Ripples from the Edge of Life.
- The findings of the GLAAD 2020 State of HIV Stigma Study in the USA found that only half of American adults feel knowledgeable around HIV and that high levels of perceived stigma around HIV still exist. This corresponds with the findings of the UK survey I commissioned in 2018, where 62% of the 2,000 people surveyed wrongly believed that there is a cure for HIV and 21% of respondents said they would no longer be friends with someone who told them they are HIV+.
- It’s always a pleasure to be interviewed for magazines, podcast and radio shows, including:
- The Sonya Morton Firth Show
- Push Through It podcast show with Mark Corder
- Cool People with Katie Neeves
- Celebrating Disability with Esi Hardy
- TruInclusion with Joanne Lockwood
- Menspeak with Kenny Mammarella D’Cruz
Volunteering has become a way of life for me since my diagnosis with HIV. I will continue to volunteer and even expand on it.
Volunteering for the Terrence Higgins Trust over the years has been particularly rewarding. As part of their work, THT carry out many community projects. Positive Voices is one, being a team of volunteers, including me, talking about our personal experiences of living with HIV. You can listen to one of them here.
Other organisations I enjoyed volunteering for include Positively UK as a peer mentor, and Queer Britain, the national LGBTQ+ permanent museum, as a guide for the family exhibition in 2019.
Writing and Publicising my Book
Writing Ripples from the Edge of Life was both necessary and cathartic. When you’ve received a life-changing diagnosis, it hits you hard. You and your family are suddenly faced with a whole new set of circumstances to deal with. It’s a huge mental adjustment to come to terms with. You need to make a complete shift in your thinking and attitude, which takes time.
I’m lucky to be alive. So, of course, my story had to be told. Thirteen other people contributed their own similar stories that enrich this book, providing hope for many.
The book launch was held at the London Canal Museum in 2018, which was a very enjoyable event. Since then, I’ve attended many book shops for signings; gave 30 copies to Wandsworth Oasis to sell as part of their charity endeavours in supporting people with HIV, and to educate people about living with HIV; and delivered readings in many places. Notably, the Polari Literary Salon at the Southbank, Chiswick Literary Festival, Gays the Word and the Birkbeck Institute for Social Research.
Thank You to ALL who Supported Luminate
So, here we are at the end of my last Luminate newsletter. It’s been such a pleasure to work and interact with many organisations in my capacity at a Disability Development Consultant.
My thanks go to everyone who has supported me and provided services throughout this time, including marketing by Chantal Cornelius and her team at Appletree and PR services provided by Angela Belassie at PR The Write Way.
And because this is not the end but the beginning, let me share my favourite quote with you: Life is not about being afraid of the storms, it’s about learning how to dance in the rain. So, I’m going out in the rain for the next chapter in my life. Please do come and dance with me.