HLN Meets…Penny Dane and Emma Hogg, North East Sight Matters
We chatted with Penny and Emma, two of the all-female dream team who decided to set up their own charity in the North East during lockdown – after seeing a lack of support for visually impaired children and their families.
Why did you first decide to set up North East Sight Matters?
[Penny] All of our directors have worked in the sight loss discipline for many years. It became apparent during the first lockdown that some support services had been halted and others significantly reduced.
We recognised more than ever that this was the time that visually-impaired children and their families needed even more support. So we decided to do something about it. We registered North East Sight Matters on 15th July 2020, as a not-for-profit social enterprise company with charitable aims.
How do you offer support to visually-impaired children and their families?
[Penny] We’ve been able to reach out online, like a lot of businesses now. We’ve set up over 50 wide-ranging activities on Zoom since receiving our first funding in October, 2020.
The things we’ve covered are skills sessions, such as adapted cookery, quizzes, horticultural experiences, creative crafts, drama music, sports and wellbeing, as well as fun things like living room discos. We also have evening support meetings for parents and carers.
How do you help ensure that children with visual impairments still have the same opportunities as other children?
[Penny] Everything we do and stand for is centred around supporting the needs of visually-impaired children and raising awareness to those people not affected by sight loss.
We’re currently organising events outside in the community at venues across the region. We always do a recce first to ensure that it’s accessible and to consider the needs of the children – whether that’s their sight impairment or other disabilities, such as if the venue is wheelchair accessible.
Tell us more about the ways in which you encourage visually-impaired children and young people to be more independent.
[Emma] Up until now, we’ve had to deliver everything online, but we still adapt what we deliver so that it’s always accessible. For example, the kitchen skills sessions are run by Penny, whose background is visual impairment rehabilitation – so she can demonstrate techniques and use specialist equipment, which we also send out for the children to try.
Our drama and music project encourages the children to talk about themselves and what it’s like to live with a visual impairment in a way that perhaps hadn’t been explored before. They’ve since been involved in writing a song that we’re going to record later this month. Most haven’t had the experience of going into a recording studio before! Later this year, we have a driving experience on a racetrack using adapted buggies. Driving is certainly something most of the children and their families didn’t expect to be doing, so that will be fantastic.
How do you feel about dedicating your lives to helping children living with sight loss?
[Emma] We feel it’s a vocation and we’re proud to be making a difference. Some of the children that come to our activities have been known to us for years. We have two young ladies living with a visual impairment, who are now professional working women who volunteer with us. Both were taught mobility and independent living skills by Penny when they were children.
It really does make it all worthwhile when we see the happy faces on Zoom and the interaction between the children and their families as they form friendships. We recently met in person for a tennis session ran by a visually-impaired tennis coach and the children fully engaged and witnessed that there are things you can still achieve, even with sight loss.
Emma, we know you’ve been living with a visual impairment yourself since birth. What has your experience been like?
[Emma] When I was at school, it was considered to be a ‘lazy eye’. It wasn’t until I was 26 that I found out that I actually had Retinitis Pigmentosa (RP), which means I have tunnel vision and night blindness.
I was in denial about the condition for years and just got on with life, which resulted in a few accidents like slips, trips and falls. Going out became increasingly difficult as I felt clumsy, especially if the light was poor.
It took me 11 years before I acknowledged it and I had to inform close friends and colleagues of my sight loss. That’s when they started to understand why I appeared to be so accident prone!
How did you feel when you were first diagnosed?
[Emma] It was a pride and confidence issue, really. I’ve always worked and been independent, so giving up my driving licence was one of the hardest things for me. Having to rely on others for transport governs when I can do things, rather than being able to go out on the spur of the moment.
Saying that, I have a great network of family and friends who do support me. I maintain my independence and like to think that I’m a positive role model for the children and families we work with.
Looking back now, Emma, what would you say to your younger self?
[Emma] I would say there is support out there and you should embrace those opportunities. Don’t be afraid to let others know about your sight impairment because life is easier if people understand – and it means they’re better equipped to support you, too.
What can we do to support you and the children you work with?
[Penny] We depend on funding to run our events and activities. Although we’re always applying to grant making trusts, they aren’t always successful. We would love businesses or individuals to sponsor us, perhaps under their Social Corporate Responsibility?
In turn, we will offer Vision Impairment Awareness Training so businesses offering services could improve what they do for their visually-impaired customers. Or, if a company is considering employing a person with sight loss, they know how to make the working environment as accessible as possible.
What are your dreams for the future of North East Sight Matters?
[Penny] We started North East Sight Matters to help make a difference to children, young people and their families. We look forward to organising events and activities in person, and continuing to develop a really worthwhile service that has a positive impact on those we work with.
To give children the understanding and the opportunities to understand that they have the ability to do whatever they want. That’s what will make our work feel worthwhile.
This is an organisation that is on a life journey with these children, and we would like to ensure there is a positive legacy.