Tasnim gives examples of why hybrid working facilitates her research as she is Deaf-Blind and these illustrate how Deaf and Disabled people’s needs are often overlooked in the workplace. It also shows how COVID restrictions have overridden reasonable adjustments as stipulated in the Equality Act 2010

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.


These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experiences are speaking on behalf of people they care for who do not communicate verbally.

Disability Rights UK (DRUK) and  People’s Voice Media have engaged in dialogues with Deaf and Disabled people about their experiences of the COVID-19 pandemic and lockdowns. These lived experience narratives detail how people were treated by health and social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities. Additionally, the dialogues explore how Deaf and Disabled people are currently managing in their daily lives, their hopes and expectations in terms of the COVID Inquiry.


These narratives are great ways to learn from one another, and can be powerful communication methods. Some of the people sharing their lived experiences are speaking on behalf of people they care for who do not communicate verbally.

Oh, could you email the questions rather than put him in the chat? I'm not gonna ask him. Oh, you're gonna ask me now? That's fine. Oh, is there any way to let you see them all? So I don't repeat myself? Or is that would it work like that? I don't know. It

A conversation. So let me if let me go for the questions and then we'll go one by one. So first question is, can you tell me a little bit about yourself? Um, yeah

So my name is Tasnim. I'm a deaf blind, um, Bangladeshi British woman. I had to think about that being like, uh, yeah, so, uh, I I you know, I had both and hearing loss

I've had it from quite a young age, and it's been the sort of thing that sort of de de over time, Um and I I grew up in Lincoln and and I've been very much interested in the intersection of disability and for a while, which is kind of led to, you know, some the activism and the research that I do. Um, and I'm currently in the middle of doing a PhD on it as Well, so I don't know if I told him about. And do you, um, get to sleep at all? I don't

I I have the habit of taking on too much. So right now I'm doing a PhD and a job in the nonprofit sector as well. And I think I need to figure out how to look after myself and navigate that work life balance as well

Yeah, I hear that. It's really difficult, isn't it? Can I ask you, uh, so really important kind of project? So what was, uh what impact did the covid pandemic and lockdowns have on your life as a deaf and disabled person? So it it came at a very annoying part in my life. And I have to kind of almost re jog my memory on this because I think what people have probably done is sort of car payment

I put it in a box in the back of their head and try to not think, think about it too much, because I think it's a it It was quite a lot, and I felt like the experiences that I had I don't think were shared by the people around me. per se, and it was probably quite disabling. So I was at the point, um, to come back, er in terms of a winding time

I was finishing off a internship at York and hoping to resume my PhD. Studies, um, back at Durham University and in that transition of coming back from Europe to Durham that March 2020. I can't remember the year, uh, was when the kind of pandemic took more of a hold in terms of the lockdowns and people wanting to, you know, overstocking on all the food, all of that sort of thing

And it was a hard time in general anyway, because the internship was quiet. You know it it it was a good experience in some ways, but it was also isolating in some, um, in other ways, too. So I was very much looking forward to going back to Durham, being part of the PhD community all over again and kind of being back in my element

Um, and that's not that's not what happened. I think like I had a house sorted. The people that I was supposed to like live with again, who I was excited to see again um, and kind of reconnect with

There were people I didn't know, but we had, like, quite a few online competitions. Band Bans met once or twice beforehand, and they seemed pretty decent. But as soon as the pandemic took more of a hole, everybody that I knew in Durham, including my housemates including PhD, the cohort of people that I knew the support networks that I would have had in Durham basically went back home

And that wasn't great. So what I ended up doing because of that? Because, um, especially with the pandemic, there's so much change going on in terms of, you know, one way systems, traffic, light systems, trying to get food and not being able to book things online. Sort of stuff

I ended up living with my partner in Dundee in his shared house. Um, and that it it was quite a you know, I think it was a house meant for four people it, but it had six of us for, like, five or six months. So I think, and living with him was good

But I I tried to focus on the silver lining sometimes because we've been together for a while. And it was nice to kind of just, you know, experience living with him and kind of you. You know, I think we were both very courage and people who've gone to do PhD in our PhD s in very different places and things like that

But we knew we would eventually live together. So the word silver lining about the pandemic is getting to live together, which was nice, but it wasn't in the most I deal situation. It was a bit of a sort of stuff, but had I not lived with him, I don't think I could have managed living in by myself without the sort of community that I sort of needed a community and the support that I needed

It was like every day going, being able to do the essentials was kind of non, you know, tricky. It was hard to get any online shopping done, which is usually the way that I've done things. Um, in time it was hard to kind of get like that

And it was like every time I'd go to Tesco's things would change the signing when the floor would change, the queues would be long. You'd have to try and find a good time to go. But I think on on top of that, the people just wouldn't would over stuck on things that they really didn't need to

It was a lot of scaremongering going on in the pandemic. So it was a bit annoying when I sort of wanted some essentials myself. And if I couldn't get that, then it was kind of like tough, basically

And it was sort of, you know, the sort of, like, see through plastic walls that they had, um, being, um, being hard of hearing, too. Made it hard with the face mask as well. Also, wearing glasses made it hard to wear face muscles for a while

Um, so it was kind of like you want, you know, trying to not bump into people, trying to not walk into people. And, yeah, basically felt like had my not lived with my partner for, like, the first kind of couple of months of the pandemic, it would have not been easy. But that being said when I came back to Durham, um, because I was still wanting to finishing off my PhD, and I was still hopeful that I could get involved with the PhD community again and things like that

Um it was still quite hard because seeing people was tricky. And I think this was as the years went on, So we were coming to the winter months. Days are a lot shorter and all those sort of things as well that I had to think about

So that was limiting for me as well, because it was like trying to get adjusted to this new way of living, but also only having a limited window of doing so. So then it was like another couple of months spent on just trying to just sort of survive and explaining that to people, you know, it it isn't easy. I think it was not the best

I That was also kind of compounded by having a very bad living situation with my housemates. Um, one was a bit more on the extreme side of being very wanting. I don't know

She basically didn't like the idea of people coming into her house because of covid, which I understand. But as someone who needs support from my partner every now and then, it made it hard for my partner to come, Um, and, you know, help me out when I needed to help me out. But then the other side of it is I had a housemate that wanted to basically have house parties and was very slobby and all those sort of stuff

And that was also difficult because there were times where living in the house wasn't the most, you know, safe place for me to be in and when you're kind of trapped in the house that you live in because you can't go anywhere else it was very, very intense. And then when I thought about trying to go to other places at the university because this is why I think they try to open some parts and they try to not open some parts and stuff like that. It wasn't very, very ideal because young university isn't very accessible

There's, like, a lot of hurdles to jump. And there's just a lack of understanding to, uh, you know, getting the extra little bit of help that you need in Van Van. So, for example, I would get, um, taxis to my department and back, um, to help with, like, just travelling and things like that

But I could only get taxis around about, you know, after four o'clock after that typical school pickup time. But I would be kicked out before four o'clock because the department didn't care about, you know, my needing to go home safely and would make me wait in the dark outside of the office. And it was hard to kind of explain to them, like, you know, if you gave me another 10 15 minutes, my taxi will eventually be here

But it was hard because trying to explain that was tiring. And then that was all on top of trying to manage a PhD which looks at, you know, uh, black and Brown disabled people who were very much affected disproportionately by the pandemic and that massively messed up with my ability to even doing my PhD research as well. So it was a phase of a lot of, you know, nothing was fixed

Everything was all over the place. My living situation wasn't that good. And in terms of like when I started coming back to dumb, but more support networks were more or less like phasing away like, I think, because I was kind of coming to the end of my well, I supposedly when it come to the end of my PhD the cohort that I was, um, a lot of people were, like, kind of leaving for good

So people I knew weren't going to be around. So it was a question of how do I meet people again when there was no sustainable PhD community and even when there were people, they weren't the best in terms of supporting, they weren't reliable and they weren't dependable. Um, and that was particularly hard when I had covid at one point, and they weren't willing to be the sort of people to help me out when I didn't have essentials and stuff like that

So it was not an easy period of time. It led to, like, a nine month extension on my PhD. It led to a lot of poor mentors

Health. It led to a lot of, you know, kind of, you know, making my support networks a bit smaller because you you don't want to trust people. You you thought you could

You you thought you could trust, But it turns out that's not the case in reality. Um, and it was it was. It was a lot

And I felt like now looking back to where I am now, it almost feels like, you know, you were kind of robbed of what could have been sort of thing. And I think the annoying thing about the whole being disabled in this sort of element is that no one around me, like, immediately around me. So I need communities existed beyond because of social media and things like that, but that I didn't have any one with in close proximity to kind of connect with to talk about these sort of things to kind of have that sort of support mentally speaking, I made some, you know, the the only The other set of silver lining that I really like from Pandemic is that I did connect with more disabled people on social media and that, and because it was on online

It was like, you know, a more of a reliable way of connecting with people and things like that and people who kind of got it. But it it was a lot. It was

There were times I really, really, really did struggle. There are times I thought I could manage and but there was a lot of burn out at the same time, too. So that was a lot of waffle

But yeah, that's, uh it just seems like such a powerful journey. And that bit that you started Well, with that, people have had to put this in a box to manage how traumatic it was and stressful. So I mean, it's really interesting you're doing this PhD and really interesting, like so you Some key phrases stuck out for me

So why do you think, like, you know, deaf and disabled people and particularly minor, deaf and disabled people had were disproportionately affected by covid. There's a lot of a a lot of on being disabled alone. There was, like, a lot of, um, you know it

I've heard the phrase that you know the way. It's a bit like a survival of the fear sort of thing. I think the people who are going to be thrown under the bus in this in this society that we live in are gonna be disabled people because we require, you know, basically more resources

I mean, the capitalistic society that we live to get there, it's not gonna be disabled. People are not going to be the priority at all. And I think that sort of level of understanding, that sort of investment and understanding what we can do better would have really helped

I mean, for example, we look at how hard it was to try and even get the interpreters to do this, sort of, you know, to kind of talk to kind of convey the message of what the up the key updates were from the pandemic because there was so much resistance to it. And you talk about, like, how does constantly something changing constantly something new. And that was kind of constantly changing

And then when you kind of combine that with the whole, you know, the racialized aspect of it as well what annoys me? Uh, I would be to come back to your question, but what annoys me about the pandemic is that there was this narrative of blaming racialized community for not thinking about what, uh, you know, for for not wanting to take up the uptake of vaccines and all this sort of stuff. And, you know, it is a bit like that the you know, the huge legacy of medical mistreatment that came before this sort of point and why people I like that instead, people were just kind of willing to, you know, focus more on the fact that you know there's a stigma and blame the communities and all this sort of stuff because that is how that is, how the society works. They would rather blame people for what they are, um uh, visualise communities for who they are and what they do and kind of pin on that

But there's no denying that when we look at rates of the people who who died there, they are people from a racialized background and things like that. And it's like there's other aspects to kind of think about it, especially disability in rates. It's so intertwined with class

And I know from my own experience of it that financially managing life during the pandemic was a lot of extra costs. Sometimes it's easier to do a much larger Tesco shop in one go because you know you can't go again rather than be able to just pick up a few things on a nearby shop. But that's kind of like how things have been sometimes it's, you know, access to accessing things like going to like shops or other essentials and things like that, or harder, and it might require you getting a taxi there

But again, that's extra added cost to it as well. So that's sort of my sort of feeling behind it. I think it goes back to like, sort of the language barriers that come with the covid messaging as well and how that wasn't really helpful, either

And I think that sort of the society, it sounds so bleak. But that is sort of the society that we kind of live in, that there's obviously a clear a clear person, a clear type of person who's at the top of this hierarchy, which will be prioritised. And they're the people who you know, don't have those health conditions and, you know, our privileged enough to be in those places that give those sort of resources and access to support

And there's no demand that, you know, racialized communities live in very deprived areas in the UK and aren't going to have the same access and level of support that you know it's not equitable. Absolutely. There's so much in what you've said I'm just drawn to the the challenges that you had to get really basic needs like and then the cost

And there's just so much in what you've said. So what could have been done differently? What could have been done differently involving disabled people at the start? Like, you know, I feel like that would have been a clear no brainer in my head. Like it it It's a hard one to say, because I guess you know, there's no denying that trying to, you know, steer the country in a pandemic is un unprecedented

Um, which is the word that we've heard quite a bit if but there could have been a lot of thinking about things in a lot more of a strategic way that we considered the multifaceted aspects of disability. So I'm deaf blind, But I know that a lot of priority was given to people who were, you know, immune compromised, which makes sense, and people who had like respiratory, uh, problems and things like that. So it makes sense why they were prioritised

But I think from my experience, so I think people kind of almost have a one dimensional view of disability and that I still had. And I know other people that did, too still had struggles and being able to kind of navigate day to day life because of my disability. Yes, I could still breathe, Um, and and I'm Yes, I'm I know I'm privileged in in in the sense that I had covid and was able to kind of, you know, be OK health wise afterwards because I know that's not the case for everyone as well

But it didn't change the fact that it took a toll on every part of my life a lot more and things like that. So there was like, almost basically kind of a limited understanding of the way that disability works and how a you know, how a global pandemic would affect that. And I think it's sort of that

But I also think the way that the government kind of handled it, it was such a a hodgepodge job done. I I I think there was so much of one thing and then changing it and then and things like that and when you have a government that doesn't have a firm stance of a firm, inclusive stance, on this sort of stuff. How do you expect the, you know, the wider population to care We know

I mean, you know, Pandemic is still very much alive today and things like that. It still very much exists and things like that, but played such a problematic role in installing this narrative that you know, the pandemic, you know, Covid is gone. It's not a thing anymore and things like that

And I think that's also problematic in the way that we think about, um, you know, disabled people as well. So it was sort of all those sort of things. I think just trying to come back to, like, what on earth the government did

It did not make sense. It was a lot, and it wasn't It wasn't inclusive. It didn't think about all kinds of people

It didn't take an equitable approach. I think the issue is is that I think the government takes more of an equal up like an equal basis based approach and though that when you take an equal based approach, it doesn't think, think about how people have varying different circumstances and things like that, and that's why so many communities have been have fallen behind or not with us anymore, and you talked about mental health. What impact did it have on your mental health? And well-being? So it's a it's a it's a weird one

It's a weird one with me and mental health, because it's one of those despite being so well versed in this area of disability and things like that as a as a person, I thought, I've always felt like I could somewhat manage my mental well-being. And I think I think it's because sometimes you feel like you have so much control over it that you should be able to do X, y and Z to help with it. Or you should try and figure out your work life balance

Or you should try and get this deadline over and done with, and then you can do X, Y and Z sort of thing. Um, I'm not on top of it, and I don't think I have been ever since, and I think if I'm honest, I should probably go to the doctors and figure out you know how to be diverse for my anxiety and look into getting C BT because it's been It's been challenging because you see the way that it surfaces in all parts of your life in terms of struggling to develop that connection with other people and struggling to build that trust with people and kind of, you know, not beating yourself up because I think a lot of things I don't know many of the disabled people will relate. Is there that massive fear of missing out and trying to overcompensate and wake up for it? And that's quite difficult when life and that has already been hard

And I think that's still something that I'm kind of juggling with, still something that I'm trying to figure out but was before the pandemic went to our housewives? Um, it's a lot worse to where I am now and I think the pandemic in a way. It was kind of nice to just kind of be in your own bubble and be like the whole world is also missing out on opportunities and it's not just me, but it was still hard to kind of find that sort of emotional support network kind of thing. For me, that was a big part on being OK in terms of my well being

Do you worry about another pandemic? Do you worry about things like this happening again? If it happens again, I don't think much is gonna happen or shift. I think what has happened now over these past few years is that we've become so desensitised to these events that people don't care. I think if it happens, probably like in a couple of decades of time, then maybe that would be a, you know, kind of give people that distance of Oh, wait, this is happening

You know what I mean? I think when you look back to history, think about other kind of epidemic in, like, other sort of global pandemic kind of things that have happened before. And to tell you the truth, I think I don't know enough about them to say what has happened or what we've learned from previous sort of situations. And I know that we you know the world, you know, because of globalisation

The world has changed quite a bit now, but if we can't learn from the past already, what's to say that we're gonna learn from this time as well? Um, but I also think like, yeah, Basically, we've become so desensitised to it. We've had kind of so many various like, you know, strands of covid that came afterwards. Um, and it's sort of like nothing has massively shifted in the way that we do things other countries could possibly see that they're doing a little bit better in terms of taking a more proactive stance

But this is a global matter, and in a global matter, it's the question of whose voices matter. And there's no denying that it's the white, non disabled, you know, voices that kind of shift, the way that the world works. Absolutely

So there is, You know, you started to cover this. There's a lot of talk about a post pandemic world. What does the post pandemic world feel look like to you as a deaf and disabled person? It's a weird one

And what is mind blowing? We're not really mind blowing because that's how society is. And like I said, go back to Desensitising, these sort of things. The pandemic

This is just one example, and the pandemic highlighted that if we had hybrid branded ways of working that can help people take part in meetings and work But now that we're kind of in a phase where whatever the new normal is people there, there's been tension. There's been friction in trying to embed that as a permanent part of the way that we work today. Some organisations go right, Don't get me wrong

Um, so it and stuff but largely non disabled spaces still have that tension towards understanding the value. What blended can be because I think people are so adamant. This is like from my experience in my job and all this sort of stuff

But people are so adamant that, you know, you do need to come in person and and sometimes I get that I think, you know, they will say some part of a relational aspect of it. But when you're disabled, you don't know what's gonna go on in your life like people on personal experience. I can go to the office whenever I like, but I have to deal with a whole lot more stuff in general, and that means that my mental energy and my bandwidth isn't always going to be there

And if I go to the office, I have to think about trying to use the app to try and get a text taxi. I have to think about identifying that taxi. I have to make sure the taxi is going to the right place

I have to be able to hear the taxi driver. I have to be able to get out of the taxi and find the entrance of the office. I have to be able to think about how my eyesight is going to adjust

As soon as I enter the building, I have to make sure I don't walk into people. I have to swipe my card, which doesn't really swipe very well in terms of accident, I have to put the Li Li button. But when I try and go to the the third floor that I need to get to I can't see the button throw as easy

Then I have to swipe again. Then I have to go into the office. Then I have to figure out Oh, wait

The sun is in my eyes and I now I need to close the blinds. Um but I have to figure out how to close the blinds. I have to kind of rejig my office because it was a hot desk sort of policy

And, um, my desk kind of changes regularly. I have to not walk into a stuff. I have to try and find the bin because the bin keeps moving

I have to try and, like, make sure my mouse works. I have to try and make sure that the printer works and that's a lot of stuff. Whereas if I worked from oh, I could have already been doing a lot more work and focusing my mental energy on something a whole lot meaningful without that sort of stress

That's not saying that some days I can have the energy to deal with all those obstacles of going to the office and things like that. But it's a lot harder and it's a lot more time. And trying to explain that to an organisation that is non disabled is very tricky

Um, yeah, so it's a bit like when we're thinking about this post pandemic world. The one supposed silver lining of working in a blended way is kind of not really been thought about how this is a much more accessible, inclusive way or working with things like that. So yeah, there's so much in that and I was like, so much happened during the covid pandemic

You've touched on a few of those things. So what do you think? We've learned from covid the COVID-19 pandemic and lockdowns like, Has there been any learning? Um, the learning is is that we live in a lot more of a divided society than we realise. There is a lot more of an in grade hierarchy

Um, and class is also very, very big part of that, too. I don't know what learning we've learned because it's sort of like, Has the learning even been genuine? I think people might say, you know, but not specific to the pandemic sort of thing. But people will say, Oh, we've got people like like and the pretty and the And, you know, I mean, who've been involved in government

But whether they represent the majority of the communities that they supposedly represent is another question. Because there's no demand that when you look at statistics, these groups are, you know, constantly, persistently, um, you know, disadvantage in, you know, basically nearly every part of society education, um, employment, health. Um, you know, the list sort of goes on and things like that

So it's sort of like What have we learned? I know that you know, various disabled people organisations have tried to do some consultancy projects where they kind of involve people to kind of say these sort of things. But when it's only that you know, when it's only centred on when the responsibility lies on disabled people, organisations and the movement to kind of do that, it's a bit like How is that systematically going to change the society that we live in? That's not like it's a It plays a part in trying to be able to kind of means the voices that need to be heard. But there's no denying that the people at the very top are the ones who haven't learned from them from anything you know, we see like party gate being a thing and and all of those sort of things that show that people didn't give a crap about the pandemic, so why would they know and and things like that? So I'm not very optimistic about it

I don't know what would happen, and I don't think there'll be much different happening. If we had another pandemic. I don't think we would even be equipped to dealing with it

On a practical level, Um, we don't haven't invested enough in our NHS. It's still very much not in a good state. And these things aren't changing

And there's so much scope to look into investing in national services, which could do a lot more good and think about things a lot more long term. But I'm not very confident in what you know, in terms of what we've learned from all of us. Absolutely

I mean, yes, that question. Um, so thinking about the covid inquiry thinking about you being a deaf and disabled person with all of those experience, What would you like the inquiry to hear? Um, I I don't know, really. I'd like the inquiry

I guess it's kind of understanding what the inquiry is for. I read like, you know, the zoom details and all those sort of things as well, so and and things like that. But I think the inquiry it would be, I guess it's like to challenge the government, to be able to kind of not forget about the voices that have gone

I'd like like it to kind of think about disability in a much more meaningful way. I'd like it to empower disabled voices to be at the forefront of these sort of conversations, not in a reactive way in a proactive way. I'd like, you know, conversations about what equitable practises look like a little bit better

Those sort of things, I hope, answers the question. Absolutely. And is there anything else you wanted to share with me about your experiences? Um, just trying to think I think it's sort of one thing that I would like to be kind of highlight is that whatever the impact from the pandemic has happened, the kind of consequences or the ramifications of it, they're very much still going on today

It still doesn't make it OK. We talked about mental well-being and the kind of you know how that services today is still very much a product of, you know, a big product of what happened before and those things didn't go away. And I think what has almost kind of happened now in my opinion, in my opinion, is the people who are mostly, you know, affected by the pandemic were almost like a cohort of people who are immediately forgotten about because people want to move on and focus on the next generation or the next cohort of experiences and being someone

And and the example I can give is my cohort or PhD. Students were basically nonexistent. The one the cohort that came after me felt like they were Non-existent

But I think my department and my university were keen to kind of forget what had happened and focus on the next cohort because they were in a better position to do so because the pandemic has somewhat eased a bit. But what does that mean for the people who are left behind? And in terms of their mental well being and things like that, there's a question of you know why? Why? You know most people can't be forgotten, really, and stuff like that. I mean, I can see that, and I feel that in all parts of just, you know, beyond my PhD world as well

That is a question of like how how people you know, how people who are very affected by it, how are they kind of dealing with it and navigating it today because there are a lot of people who lost a lot of family members. There are a lot of people who lost their job. They got people who would have been evicted or lost their homes and all that sort of stuff

And what's disheartening is is that that's sort of forgotten about because it's so easy. And I don't know why this country has a habit of doing it, because they do it, for example, with where they're so easy to kind of create that distance and act like it has nothing to do with them anymore and things like that. And that's problematic

That's how we erase things. That's how we erase narratives. That's how we erase experiences

And that's difficult because we've seen history. Well, we've seen history repeat itself all over again. So, yeah, I think that's how it thank you

Um, if you haven't got any more questions, Uh, not any anything more to add. Can I stop? Should I stop recording there? Yeah, Yeah. Go for it

Brilliant. Oops. My computer is concrete

The today.

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