As Co-Chair of Deafblind Scotland and a leader with lived experience, Issy McGrath, is all too aware of the cloak of invisibility that can surround those who are Deafblind.
In a world in which many take their hearing and sight for granted, those with a dual sensory impairment, like Issy, face many barriers to involvement and participation daily.
That’s why, thanks to funding from our Leaders with Lived Experience programme, Deafblind Scotland is launching The Dare To Dream project.
Here, in her own words, Issy reflects on life with Ushers Syndrome, and tells us how this National Lottery funded project will give a voice to those who need to be heard:
I was born with a genetic condition called Ushes Syndrome and severely deaf but through determination and hard work managed to go through university and climb the career ladder. In doing so, I was very dependent on my eyesight for lip-reading, hearing aids to make the most of my residual hearing and it helped that I had a reasonable grasp of British Sign Language. Together these meant I could interact with society as a whole and keep pace with everything that was going on around me.
I knew, however, from an early stage in my career that I would eventually go blind. Therein started a long and painfully progressive journey into… invisibility, where I just couldn’t see and some just wouldn’t see me. So, I live in a yellow world now. Everything’s just plain yellow to me and I struggle to communicate on a daily basis using what little residual hearing I have.
Moving from having a single sensory loss to an acquired dual sensory loss was a massive challenge. I remember cooking in my kitchen, making a beef curry, when someone came into the kitchen and exclaimed “gosh can you still cook?” I don’t know at what point in my life others’ expectations of what I can achieve dropped so low, my voice seemed to go from a shout to a whisper. Being handed a coffee when really you wanted tea is beyond frustrating, not being asked or consulted regarding how one would like to make one’s own choices in life is a very demoralising road to be on.
That is why our Dare To Dream lived experience project is so important. It will focus on building peer leadership skills and other opportunities for deafblind people ensuring we can participate in decisions and use our experience to create change.
Thanks to National Lottery funding, this project will make sure that not only do I no longer need to feel invisible and without a voice but other Deafblind people will have the support they need to feel able to step out of the shadows and challenge the misperceptions about what Deafblind people can achieve.
All I ask is that I be engaged with – and I get that cup of tea when I want it, preferably with milk.
It’s quite simple really.
Deafblind Scotland received £45,518 from our UK wide Leaders with Lived Experience programme. This supports organisations to better embed experts by experience in all aspects of their operations – including as they recover from COVID-19.
The Dare To Dream project will focus on building peer leadership skills and opportunities for Deafblind people supporting them to work with the Scottish Advisory Group on Deafblindness, and giving them a voice on those issues and developments that impact them.