As Deafblind Awareness Week continues, we got in touch with Nikki Morris, CEO of Deafblind UK, a national charity that aims to provide support to those who are deafblind. The charity also strives to support family members of deafblind individuals with emotional assistance. Throughout this feature, Nikki outlines the work the charity does to raise awareness and some of the main challenges that her and the charity itself face.
First, here is some information about what Deafblindness is:
The definition of Deafblindness is a combination of sight and hearing loss that affects a person’s ability to communicate, access information and get around (NHS). Deafblindness comes on a huge spectrum ranging from struggling to see and hear the TV right through to not being able to see or hear anything at all (Deafblind UK). Deafblindness can be caused by certain health conditions, illnesses or from ageing. Such health conditions include, Usher Syndrome, which is a genetic condition, problems associated with premature birth or damage to the brain, such as from meningitis, a stroke, or severe head injury (Deafblind UK).
Deafblind Awareness Week marks the birthday of Helen Keller, a political activist who became the first individual with deafblindness to receive a Bachelor of Arts degree in 1904. Keller was also a successful author of books including, The Story of My Life (1902) and Optimism (1903).
The next section will focus on the work of Nikki Morris and the charity she leads, Deafblind UK:
- What are the main aims of Deafblind UK?
We want to help anyone affected by deafblindness to thrive, by having easy access to the support they want, when they want it, in the format they want it in. We are the only charity specifically supporting people who are deafblind in the UK and so we also aim to lead national and international research into the condition and influence key stakeholders to ensure that deafblind people are supported in the right way.
- Can you expand on the work Deafblind UK does to raise awareness?
We want everyone who is facing deafblindness to know that they are not alone. To do this, we need to help others to understand what deafblindness is and the impact it has on people. We have a learning and development programme to raise awareness and teach people about deafblindness. Within this we do a lot of work with schools and have recently developed some resources to help staff teach students about sensory loss in a fun and interactive way. The Deafblind UK Conference in October is also a fantastic opportunity to raise awareness about sight and hearing loss, to hear from people who live with deafblindness and those who support them. It’s free to attend, so do register and join us! And, not forgetting, Deafblind Awareness Week, which gives us the opportunity to talk to a much wider audience and dispel any preconceptions that people might have about deafblindness.
- What are some of the biggest challenges that you have faced as the CEO of Deafblind UK?
I think the biggest challenge is raising awareness across the UK so that we can reach and meet the needs of a growing cohort of people affected by deafblindness. There are over 450,000 people affected in the UK today and this is set to rise to over 600,000 by 2035. So, there’s a lot for us to do!
Changing our working practice to remote working has been a major change in how we work. It has enabled us to recruit and retain the best staff we can across the UK, while supporting people in the way they want to work in a post pandemic world. We continue to meet up regularly which is important so that we get to know each other better and have time to dig deep into issues and develop ideas together. We undertook a staff questionnaire six months after the move from hybrid working to remote and we received 100% staff satisfaction with the changes which was great validation!
Last but not least, we are investing in our fundraising and retail functions. There continues to be pressure for every charity on developing income streams with the rise in the cost of living and competing priorities for people. There is also a change in how people are supporting charities following covid, such as a reduction in the use of cash and hybrid or remote working, so we are changing how we fundraise to reflect that.
- Going forward, do you have any goals that you would like to achieve with Deafblind UK?
I would like to tangibly increase both the number of people that we support and the impact (difference) we can make for each person and every person receiving our services. Deafblindness is often a forgotten condition when people think about sensory loss and yet the impact on the individual and their family, friends and work colleagues can be enormous. To make that difference, we need to make sure that we deliver on our five key areas of impact: Care and support, education, research, influence, and technology. Alongside that we need to invest in our staff and volunteers, to make sure they are developed in the role to continue to develop our inhouse expertise and to have manageable workloads. And of course, we need to increase our income so that we can afford to meet the needs of a growing cohort of people.
On a personal level, I am slowly learning BSL and the Deafblind Manual so that I can communicate better with people for whom these are their first language. It will take me quite a long time before I am both competent and confident in them but every day I am getting just that bit better.
Here at Signature, we would like to thank Nikki for highlighting the ways Deafblind UK is working to make a difference to people’s lives. Nikki and her team work tirelessly to provide support for those who are deaf blind and those family members who surround them. Through raising awareness, more people will be able to understand what deafblindness is and learn more about how it affects people. To find out more about the ways you can show your support, simply go to the Deafblind UK site for more information.
