I was so excited about 2020, it was set to be another full year, lots of exciting projects, lots of learning, lots of educating, lots of travel, a new nephew and my own flat.
Instead it’s been a year of cancelled travel, a bit of furlough, lots of remote working and learning, two nephews and here’s hoping that new flat happens too!
I still learnt a lot, observed a lot and looked to solve some covid related challenges for those around me.
Before Covid hit I had again been nominated for a couple of awards this year, I never win anything but it’s great to be recognised for the work I do in trying to make an overall difference to others.
On the whole I have worked remotely, which is much easier for me. However I have missed seeing my work colleagues scattered all over the country and world. I have missed having to be organised, timing trains, organising accomodation, walking in the rain with guidedog Bella , laden with backpack full of all sorts including dog food! Feeling tired, weary. The stress of airports and air travel, I've realised as much as it causes me anxiety I do it and I miss it, infact I have missed the daily challenges of being me!
Today’s blog is very much about my thoughts on how Covid 19 has impacted on us all.
I wanted to talk about five things I live with every day since my Usher Syndrome diagnosis at 12 years old:
I think people like myself had a head start on this resulting in us being in a position to support others.
I have, in a strange way drawn strength from this in the belief that now majorities are experiencing what is often my life they will, when the struggles of Covid die down, empathise more with those who live with challenges every day!
When I look back to March and the fear of that first lockdown I recall using skills I have developed because of Usher Syndrome to help others, be more accessible via technology.
Of course I was not the only person doing this but being an early adopter of assistive technology and social media for learning and socialising it was great to see all generations wanting to embrace what is possible rather than what is not, an ethos my parents have drummed into me over the years.
I spent several days on and off talking my 81 year old Grandad through how to use FaceTime groups and Zoom, he found it all very confusing and stressful but he also showed determination to work it out so he was not so isolated. Living on his own 200 miles away me and my parents were worried about his mental health. I was so proud of grumpy old Grandad’s determination, just shows you’re never too old to learn new things!
I recall the fear and anxiety of others scared to leave their houses, yes, I’ve been there too. When I was just 14, I was registered blind and fearful of leaving the house. As a deaf person I did not feel overly confident out on my own and as a result tended to have a small circle of friends and if out would invariably be with one of them. However, going from being deaf to deafblind at such an early age I learnt an invaluable lesson, true friends are hard to find!
Matched with my first Guidedog Unis at 16 I was able to go out but my fear of the outside world not being able to see or hear particularly well only fuelled my isolation and as a result of Usher Syndrome, deaf blindness I fell into depression. I imagine many have felt like this since ‘Social Distancing” became a thing.
My whole world and dreams fell apart. The regular inference from professionals that I would make little of my life allowed me to feel stressed and anxious about the future and it took a long time for me to realise that yes my future may well be uncertain but I will be the judge as to how far I can go.
Challenge is all I know, I am very aware that in many things I do I must strategise, I must find my path and that dwelling on the negatives of the past is destructive and wasteful of my energy which only holds me back.
The many disappointments I experienced through senior school education and further education were painful and unnecessary, but they have taught me valuable lessons.
Irrespective of what the so-called professionals have said I am very capable and here I am.
I cannot say I have escaped Covid without anxieties. Social distancing remains impossible for me and my guidedog Bella.
There have been terrible stories in the news about those who show little or no empathy for those of us who cannot see or hear properly. It is totally understandable to not want strangers within 2 meters but surely with common sense the sighted could avoid this happening. It’s a double edged sword for the deafblind, we also have to deal with the dreaded face masks, most of which deny us access to communication, why not use accessible face coverings, available here: https://shop.molly-watt-trust.org
Perhaps take the challenge, walk around outside, near the public in the dark with your eyes closed and ears blocked, it’s fair to say you might well struggle with what is being asked and might consider moving aside next time you see somebody struggling, in the interest of us all being covid safe.
On the whole I have been ok throughout this scary time but I certainly now have some anxieties about when some sort of normality returns, but I know with Bella at my side I will overcome these things and hopefully more exciting projects will come my way, more travel, more learning, more educating perhaps not more nephews or nieces just yet but here’s hoping moving to my new flat actually happens!
2020 we are done with you, here's hoping 2021 is a big improvement for us all.
When I look back I can see I isolated myself when I was first diagnosed with Usher Syndrome.
I could carry on as a deaf person, no difference. I went to school, I was anxious as I struggled to cope with my changing world. I couldn't wait to get home to the safety of home and my Laptop. I'd always have an excuse not to go out!
Communicating online was easy, back then we all had Bebo and MySpace, before Facebook and Twitter, I felt no different!
I was in my bedroom chatting to my friends, I didn't have to think about falling over, walking into things or people and although my eyes were terrible and often sore and tired I had a little more sight than I do today, it was ok!
What I sort of did but didn't realise was I was isolating myself, the Internet allowed me to do so because I could and because it made me feel "normal" but I was in denial, a very cosy place to hide until hiding is no longer an option.
I have blogged about "coming out" as Molly with Usher Syndrome and as painful as I thought that would be it wasn't and it made me feel much better, after all I was only kidding myself deep down! I've found if people understand me and my challenges they are supportive without being patronising.
One of the real positives of accessing the Internet for me has been social networking, bringing people with Usher Syndrome together, as an American friend once said "You don't find somebody else with Usher Syndrome on the next block".
Usher Syndrome / deafblindness is an isolating condition, by definition and yes it's rare but we don't want to feel alone or different and now we have access to each other, we can support each other, inspire each other, share experiences and we can raise awareness of our condition and hopefully make a difference.
At a recent event I was asked what my favourite piece of technology had been and of course my hearing aids have to be right up there as they along with the best support, hard work and determination I'm able to communicates with speech.
Communication is something most take for granted but it really is something I value particularly now I'm blind, deafblind - I can explain where I'm at, what I need and I try to use this ability to help others with Usher Syndrome.
After my hearing aids came my first trusty MacBook and the reason, besides what I've mentioned above was as my world closed in my MacBook allowed me to continue accessing the world because of its unique built in accessibility features and at 12 years old I learnt how to use the functions with little help and I feel very lucky to have grown up with this technology.
I hope technology becomes more accessible to all and that developers consider the individual access needs of all.
At that very same event I was asked who inspired me most and besides my close family my reply was Helen Keller because not only was she deafblind but she did amazing things without the technology I totally rely on, an incredible lady. I wonder what she would have thought about today's assistive technology.
Happy Birthday Helen Keller 27 June