Covid-19 and Disability: A Whole New World

It has been a long time since I last wrote a blog post. This is due to our family life becoming busier with our son starting secondary school and balancing work and everyday life. This post is a bit longer than usual so you may wish to get a cup of tea! 

Since covid-19 has reached the UK, our life has changed quite a lot but at the same time, maybe not as much as other people. The biggest change was when the schools were closed on 20th March 2020. It was a scary time because no one knew how long it would be for and it was unnerving to think that our lives were being limited without us being able to do anything about it. As it turned out, home learning continued until the summer holidays for our son at secondary school while our primary school aged daughter went back for three weeks at the end of the school year. 

I was included on the shielding list as a clinically extremely vulnerable. I wasn't automatically added but when I was unable to get my usual online grocery shop, I learnt online that the way to get a priority slot was to be added as shielding person. It took a few weeks to get on the priority list and in this time Matthew had to go to the supermarket to get some food. This was concerning because it was increasing our risk to the virus. Once I was able to place online orders it was such as relief although for many weeks there were problems with stock levels. We resorted to buying a 16kg bag each of bread flour, self raising flour and plain flour because we couldn't order regular sizes of them and I do a lot of cooking and baking so they were essential. I was contacted by our county's well-being hub to make sure I had all the essentials I needed including food and medications. It was reassuring to know they are there if I need support. My GP also phoned me which I appreciated.

We adapted to our new situation of all being at home. It is very fortunate that we have an office above our garage that we run our business from which meant our working routine was very similar and the children each had their own desk. It did impact our day though having to help them with schoolwork. It was very exhausting and not easy trying to be motivating in a setting that didn't have the variety they have at school. We managed and kept up with most of the work but it wasn't easy. I do feel lucky that the work I do is based from home and that there is no pressure to go back into a workplace. I think that would be very worrying as the shielding measures were lifted on 1st August. 

When the primary schools started opening, we were pleased because it was that home learning that was the hardest. Unfortunately it was a bit of a challenge to get our daughter back into school, which was completely unexpected. We signed the form saying that we wanted her to go back but were then informed she couldn't join her peers because I was shielding and they couldn't take anyone, staff or pupil, who was from a shielding family. The policy was in place while the social distancing recommendations was two metres and they couldn't guarantee they would maintain two metre distance between the children at all times. This made me rather sad, it didn't seem right that she was being prevented from attending school because of me although I did partly understand the school's position. We had balanced the risks of her bringing covid-19 home with the many positive benefits to her mental health of being back with her peers and decided that returning to school was best for her. It felt very unfair and a barrier to being able to access the same parts of life as everyone else. Some people who were shielding would choose not to send their children to school, and that is completely fine. I just think it should be up to each individual to make the decision themselves based on their circumstances, especially when it isn't the child who is shielding. Thankfully, within a few weeks the guidance for social distancing was reduced to one metre or more which meant that she could return to school.

Shielding has been valuable because helped to ensure that extra support is available to those who need it. It officially lifted on 1st August, although the government say it can be reintroduced at any time if the rates of infection increase. It feels like it lifted too early, especially as it is less than a month after shops, pubs, restaurants etc have opened as well as hairdressers and other areas of the leisure and entertainment industry. We don't yet know the implication of all this easing and people being more mobile around the country and abroad over the summer. It makes me feel even more cautious and wary about my risk of catching the virus. During lockdown I felt safer because everyone was doing the same thing and there was the expectation to stay at home. When out for essential trips people were more likely to keep their distance and there were far fewer people in general. Lockdown has eased and with it people are becoming less cautious. My personal belief is that shielding has been lifted this early because it helps the economy and means that employers can bring people who have shielded back to work as long as they are covid-secure. There is another possible different view that some people are glad shielding has lifted because they have been keen to return to work and couldn't previously because of the restrictions. However, I think it is too early, and from what I have read on social media, I am not alone.

Government guidance regarding shielding has been conflicting, from 6th July they said that you can meet up to six people outside while maintaining social distancing. From 1st August shielding ends and you can visit the shops etc as anyone else would. They still say that you need to adhere to strict social distancing and that where you can, you should stay at home as much as possible to minimise your risk of catching the virus. So, on one hand they are saying that you can lead a life like everyone else, but then on the other, you are advised to stay at home because there is still a big risk for you! We are making our own judgments and staying home. We haven't seen family and friends and haven't visited places because it feels like too much of a risk at the moment.  We are concerned that others aren't keeping a distance or wearing masks and it is also a concern about picking up the virus from touching something. In particular if I needed the loo while out, this would be a big issue because I use all the grab rails, need to push the door with my hand etc. People without a disability would be able to minimise their contact with other surfaces but this is a lot hard for me as a wheelchair user and also visually impaired. 

My multicoloured crochet shawl that I finished

We do miss everyone and it's harder now lockdown is over but we keep in touch with FaceTime, Zoom and phone calls. If I were to catch covid-19, I am at greater risk of it affecting me badly and we don't want to take that risk. It would have too much of an impact to our children, family life, business and finances. We are fortunate to live in a home with a garden that we enjoy surrounded by countryside. Also, it's giving us a good opportunity to work on all the decorating that needs doing and I've finished some crochet projects!

Putting aside my concerns about catching the virus if I were to go out freely, there are now many obstacles in my path that make me feel more disabled than I have ever felt. I usually get out and about independently using the buses or trains because I am unable to drive due to my sight loss. These forms of transport just don't feel safe, especially as I am not feeling confident about the wearing of face coverings being enforced. I often use my hands to feel my way around if I am maneuvering in an unfamiliar spaces, this includes on trains and buses. Then I will obviously touch my joystick on my wheelchair and my long cane. All of this could lead to picking up and transferring the virus. Plus I believe that there are limits to how many people are allowed on the bus to enforce social distancing so it may not be possible to get on in the first place. Buses aren't very frequent around here so it could get rather frustrating!

Our pink garden roses.

If I were to actually manage to get to my destination, such as go to town for some shopping, I am anxious about what that whole experience would be like. My tunnel vision means I cannot see very much and it becomes very confusing when familiar places change. In an unfamiliar setting I'll often feel overwhelmed and feel claustrophobic. There are plans to widen some parts of the pavement in the high street of our local town and this likely to be hard to navigate because it would be a very different layout to the one I am used. I think the intention is to also add more outdoor seating for eating places, 'street furniture' is always an issue if you have sight loss or use a wheelchair. It will probably feel crowded and cause lots of unfamiliar obstacles to navigate while trying to keep two metres apart. Friends and family have told me that there are now markings on the floor of shops guiding you where to go but I wouldn't be able to see these. I definitely wouldn't be able to see if people were around me and would struggle to keep the two metres distance that I'm so keen to do. I would worry about other people's reactions if I got too close or broke one of the guidelines. I would also be very concerned about others getting too close to me and that I wouldn't be able to move away because it would be difficult maneuvering an electric wheelchair in shops with others around while maintain social distancing especially when I can't see them! When I'm shopping, I need to pick up the items, look at them closely and feel them because I cannot see well. Now, I understand that this is discouraged to avoid the spread of covid-19 but that then becomes another disabling barrier to me and many other people with visual impairments. Sight loss is an invisible disability and although we may have aids to help us such as guide dogs and long canes, for many it is not obvious that we have an impairment and that it has a massive impact on our everyday lives. 

A crochet rainbow that I made.

Technically, according to the guidelines, I don't have to wear a face covering because my disability causes breathing problems - I have weakened chest muscles and use a bipap machine at night to aid my breathing. It fluctuates from day to day how easy I find breathing, some days my chest muscles are more worn out and breathing is more tiring. It's not something that's visible to anyone else, it's how I feel within myself. Although I don't have to wear a face covering, I have bought a couple of masks for the times that I have to go out, e.g. I'm anticipating going to the doctor's surgery in the next few months for my flu jab and I'm also due a dentist appointment. I am expecting the mask to make my breathing a little harder but I would rather wear one than have to explain to others why I am not and I would not expect to be in these places long. Also, I think that by wearing one it will hopefully help encourage others to do the same and it will be an expectation and considered 'normal'. I have chosen to wear a face mask rather than a scarf or buff because both my hands are controlling my wheelchair and holding my long cane so I'd be unable to adjust a face covering easily and I thought a mask would be more secure.

For now, we are continuing as we have been and hoping that our children are able to return to school in September but it's really difficult to plan more than a week ahead because the situation changes all the time. It is hard to know how much at risk we are of catching the virus in our area, statistics can be interpreted in different ways (!) but we are acting in the way we feel most comfortable and I think that is all anyone can do, while adhering to the recommendations for precautions and social distancing. 

I hope you enjoyed the insight into how it has been for me during the pandemic. Please do let me know if you have experiences from shielding, it would be really good to hear your viewpoint.

~ Best wishes, Melissa ~

Hopes and Fears

Losing some of your sight is one of the scariest things to go through and with it comes all sorts of emotions and experiences that you have to work your way through. For some people it happens slowly and for others it can happen very suddenly over a few days or even overnight. Unfortunately I have experienced sudden sight loss, about eleven years ago and more recently, a few weeks ago. Whilst it is not life threatening; which is something I have to keep reminding myself in the early days of adjustment to provide some balance to the situation, it is challenging, scary and something that is difficult to experience.

My experience involved waking up with eyes that kept 'flickering', they couldn't decide how to focus and this made looking at things very difficult. I noticed that my left eye had overnight lost significantly more vision, and it's always been the worse eye, and I've also lost vision in the bottom part of my eyes which means my field of vision has got a lot smaller. This has impacted my every day activities in so many ways. When preparing food, I'm unable to see both hands at the same time, so if I'm chopping vegetables, I can choose to either look at the vegetable or my hand operating the knife (I'm left handed) but never both. I can't read the notes below the lines on my guitar music, so I'm need to learn new pieces from memory. I can't see my whole face when I'm putting my make up on anymore, I can see independent areas like my mouth, one eye etc. I cannot see some areas at all - particularly when applying make up to my right eye and have to take a leap of faith that I haven't made a mess of my mascara! I cannot see my whole outfit that I'm wearing to decide on its overall effect. I have to magnify the computer more to read, and reading in general is more tiring. Watching TV is more challenging due to my ability to see detail being reduced, and also we only watch TV in the evening which is when my eyes are most tired and can't always focus properly.  My husband is amazing and he has become my personal describer, telling me about all the things I cannot see as well as I used to. These are all the practical difficulties but there are emotional ones too....

When sight loss happens it gives me a huge sinking feeling, my heart feels heavy and sad because of the sudden loss. It is something that can't be escaped from, every action is a reminder of sight loss and each time something is harder as a result of failing sight, it feels like a massive blow. The only escape is when it is bedtime. It generates feelings of claustrophobia, it feels like living in a box being increasingly shut out from the rest of the world. Finding items is so much harder and tiring because I have to scan more with my eyes and I lose track of where I have looked - I need to learn to more methodically! It is hard conveying the news to family and friends, knowing how to tell them, and responding to different reactions. I hate giving sad news and it is not easy to do. Life outside the home is more confusing, there is a greater feeling of vulnerability, shopping is scary and takes longer and because it is a hidden disability other people have no idea that these difficulties exist, unless they know you. Experiencing sight loss evokes feelings very similar to those experienced when someone you love has passed away, fear, sadness, anger, uncertainty, vulnerability, adjustment to new situations.

Despite all this uncertainty, sadness and fear, time does heal, I have been through this sort of thing before and feel experienced with my coping strategies. It is best to do things in my own time and simply allow time to adjust. My first shopping visit after my sudden sight loss was quite scary, especially because I had my children with me so I needed to keep an eye on them. However, it was successful and I know I can get out independently. I haven't cut myself (yet!) whilst preparing food although I do keep knocking things with my left arm because I keep forgetting to maintain awareness about my reduced vision. I still get really sad when my children try to show me something detailed, usually a picture in a book and I just can't see it. However, I need to learn to use my magnifier more and ensure I take the item to a room that has better lighting. It will get easier to adapt to, and already I am more positive about coping with it, but I am a positive person and have a busy life which keeps me occupied and little time for thinking about the negative points of my disability.

To end on a really positive note, I am very excited and looking forward to my new role as Project Coordinator for Wiltshire Sight. I am working on the 'Looking Out for Sight' project, funded by the Thomas Pocklington Trust, and I am thrilled to have been offered the job. Employment is not easy to achieve when you have a disability and being offered this job gives me an enormous sense of self fulfillment and I am very keen to help people who are in a similar situation to myself. It turns something negative that I'm experiencing into a positive and if I can make a difference to the lives of people living with sight loss, it makes me very happy.

Fun in the caves with Wiltshire Sight and improved accessibility at Vodafone

I haven't written for a while because it became far too busy with Christmas preparations and I had to focus on that. Now it is the new year and I have some more time!

This is a photo of the caves at Wookey Hole

Just before Christmas we had a lovely outing with Wiltshire Sight Zoom Club to visit Wookey Hole Caves and Father Christmas. Wiltshire Sight Zoom Club brings together children and their families who are affected by sight loss - whether it is the children or parents who have visual impairment. It provides a support network and various activities where families can share experiences and it can help with any feelings of isolation.

It is good for the children in particular because when you are growing up with a disability, whether it is sight loss or any other impairment, life is harder and you can feel very different from your peer group. I remember feeling very isolated, had very little confidence and it was hard joining in with all the activities my peers were doing. At secondary school I most wanted to be able to walk around school with a rucksack on my back, as all my friends did, because at the time I thought it was a really 'cool' normal thing to be able to do and I couldn't achieve this. It is the little things that can make such a difference to making you feel included. Times have changed, and there is far more support for people with disabilities, including Wiltshire Sight who do an amazing job with supporting people with sight loss by providing advice about equipment and services, workshops and general support with making the most of your sight.

This is a photo of the mirror maze -
Anthony and Charlotte can be seen many times!

Wookey Hole is very accommodating to people with disabilities. Although the caves are not wheelchair accessible, they have provided a film, that is shown in a quiet room, which takes the viewer on a tour of the caves and talks about the different stories that are linked to them, some are factual, others less so! I've wanted to visited the caves since childhood, to see the Witch of Wookey Hole, so I was a bit disappointed to learn that the caves are not suitable for wheelchair users. However, the film is very informative and I do feel like I have an idea of what they look like and an understanding of their history. There is a lot to do at Wookey Hole, we thoroughly enjoyed the circus show performed by the children from the village at Wookey Hole. They were all competent in so many skills such as magic tricks, acrobatics, unicycles and aerial work. The mirror maze was good fun and Anthony and Charlotte loved visiting Father Christmas. Apart from the caves, all the activities we did were accessible and all the staff were very helpful and welcoming. Thank you to Wiltshire Sight for arranging such a lovely day out.

Yesterday I visited Vodafone in Marlborough to discuss my phone. As with many of the shops in Marlborough, Vodafone has several big steps leading up to it. This time, I noticed a touch sensitive panel on the window, which was for people with disabilities to press for assistance. I did this and someone came out very quickly. They asked if I would like to use the ramp and got it for me. Unfortunately the ramp did not go over the step of the door frame, and I decided not to go over it because it probably wouldn't be safe to go back out again. However, the two members of staff were so helpful, and immediately took photos of ramp showing the step that was causing the problem. They said that they would send them to the person who organised the ramp. I was the first person to use it so they didn't realise it was a problem. I am really appreciative that they had purchased a ramp and of the way in which they dealt with the situation.

Back in Time at Bristol

This is a photo of Melissa sitting in my wheelchair
by the SS Great Britain

Last week we had a very enjoyable half term visit to Bristol. We returned to the SS Great Britain which we had visited in the summer holidays but did not have time to explore fully. The tickets allowed unlimited entry to the SS Great Britain for the following twelve months which makes this excellent value.

The ship is surprisingly accessible for something so old, with through floor lifts, ramped access everywhere and audio description of the ship using walkie talkies which you can request at the ticket desk. I did get a little confused with navigating through the audio description but it is a brilliant idea, especially for something that is so detailed but due to it being quite dark in places, it is hard to see when you have a visual impairment. The ship is very atmospheric, you really feel as though you have travelled back in time. There are very realistic smells (I think they are stronger if you visit in the morning) - it was not pleasant walking past the laundry in the steerage area! In the cargo area you could smell the animals and they had life size models of people and animals throughout the ship. Sometimes you have to look twice to work out if the person is a visitor or a model! The contrast between first class steerage is huge - it was fascinating to see how much life on board the ship differed depending on your wealth.

This is a photo of Melissa lying in one of the beds in the
First Class cabins

It took us nearly two hours to explore the museum and the ship. I recommend visiting in the morning, we arrived shortly after it opened and it was really quiet which was great for moving around freely in my wheelchair. When we visited during the summer in the afternoon it was really busy and on several occasions it was difficult moving through the corridors with other visitors around. The SS Great Britain is thoroughly enjoyable for adults and children, and I definitely recommend it for accessibility.


We discovered a lovely pub in Queen Square called The Hole in The Wall while we were on our way to the Bristol Aquarium. We had a delicious lunch, served very quickly, with friendly service. It is great for wheelchair access too with a spacious disabled toilet and plenty of space for maneuvering around the pub.

This is a photo of a sea horse at the Bristol Aquarium

Bristol Aquarium was an fascinating conclusion to our day. We particularly enjoyed the talk about sea horses and feeding the rays. It is all completely accessible, with lifts and ramps and several disabled toilets, one operated by a Radar key. The aquarium is a bit different to others that we have visited because it has outside areas that replicated a tropical forest with trees and ponds. It is another place that I recommend visiting.