Eleanor is speaking to Isaac on behalf of her daughter. She was very frightened by the DNR information that people who were classified as vulnerable were sent, because her daughter cannot communicate verbally and would not have been able to express her needs if she’d had to go to hospital. Eleanor found a lot of the government information was confusing and it made many Deaf and Disabled people feel that they are considered not useful to society.

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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 experience are speaking on behalf of people they care for who do not communicate verbally.

Yeah. Um, can I get you to introduce yourself, please? Um, you just click it. My name is Eleanor September, and then I'm a mom with a young lady of almost 30 this year. Ah, thanks for sharing

Um, this project, you know, that we just is about the experiences of, uh, deaf and disabled people carers. Um, and I know. So why do you wanna be sharing your story about the covid about covid? Oh, God

I think it was the impact it had on us as a unit here because of all the factors that impacted us Suddenly, without any warning or support thereafter. And navi navigating the system to try and find support was very traumatic and very in the, um made myself and my daughter quite isolated during the whole period. Yeah

So how did you manage On a daily basis? To just get through? Well, starting from right from the beginning, um, with the p A s, for instance, where we were expected to have a remote set up set up already with somebody like myself who completely illiterate with i t and having to hook up and set up zoom sessions with P a s FaceTime on the phone. Make sure that things were done for her. That's not taking me into account, by the way, because no one seems to take that into consideration

So that was traumatic in itself. Because then I had to source friends who I knew were a little bit more I t literate to help me out on how to set things up. And that took days before anything could happen

So my access to the outside world was completely cut off. And considering that I had never done a food shop ever online or anything like that, I didn't know it existed. And also the fact that medications and things like that it was just felt as if, Oh, God, the world has ended

But it really made me open my eyes as to the expectations of the government and the masses that are running this country, that they don't take that into consideration. Some of us are not of the generation of picking these things up overnight. My daughter may be able to do these things because she does it from the generation she comes from, but she can't explain it to me

So what's the use of that in my unit. And you spoke about your you know, your your daughter having a learning disability, autism, breathing problems, all of these things that, um you told me, but your sister talked about being a disabled person yourself. So can I ask you, what impact did Covid and lockdown have on you as a disabled person? I think it made the ability for me to think I was a very effective parent or parent parenting skills

Were they in place suddenly disabled? Because even the communication with my daughter, because of her mental health and her worry that the world of, you know, being able to get her out of the house was curtailed and the fact that she was vulnerable medically as well. She feared that she would never be able to be able to actually express what her physical conditions were because she could see that I was also not very well. So she if she had become ill

My fear was that with all the things that had happened on the NHS and hearing the horror stories in the news about the d. N. R

And things like that, how would it affect us because I also have a and a respiratory problem. She has one as well. But then if we ended up in hospital, would how would that actually translate into real life? So it it traumatised in many, many ways mentally, more than physically, because, OK, we are managing to be isolating ourselves

But even that accessing those those those, um uh accessing the community as far as the government, the county and the Essex County Council that I belong to because I'm in Essex was difficult because there was no point of call of contact where you could just phone and say, Listen, I'm drowning here. Where do I go with this? If it wasn't for the outside help I sourced from the voluntary sector, that actually was. If without them, I couldn't survive this because left to the government and the information they were giving us, I couldn't even understand what I was meant to do

Really important. You You said to me that a big challenge was yours was your mobility and being, um you know, this whole idea of, like exercise once a day in lockdown and you not being able to support your daughter with that because your own mobility and disabilities how did you manage to to navigate that world? I think because of the support I received from the voluntary sector and also the friends that obviously knew my circumstances signposting me and making me join this sort of circles that they were involved in helped to navigate that because they had little amongst the disabled, uh, group that I belong to, and the friends that I have. We were able to set up our own little, um, day to day communication, whether it would be exercise or whether it be social, having a cup of tea

You know, those sort of things where we could discuss our short fails and the shortcomings and being able to say I'm drowning and not be judged because, therefore, that fear, the isolation was the impact of that alone was quite tough on us, because really, I didn't know where to go To find that support, they may be able to say OK, we send out these letters, they're written in w go addressed to my daughter who doesn't read. And then there's going to be me who's then inundated with information, and I'm having to somehow with my mental problems, with my condition having to access that as well on that level, understand what they're saying, understand the impact, it it it. It's just a lot of expectation when you're going through the trauma of itself and not knowing the uncertainty of what that they held was enough to make sure that we did not move forward with open arms and say there's a chance for the future

There was none of that. It was just like life had ended. How do you feel about the way you were treated? I'm still processing that, because I just think it just left to get on with it

It's just it's so unacceptable. And then when you phone other parents that are going through the same thing, what do you have, you know, amongst each other to try and support each other emotionally, spiritually and otherwise, and understanding everybody's got the same stresses and pressures knowing you can empathise. But to what degree does that support the person? Yeah, And you said to me earlier that you were so scared to come into contact with anyone because you believed that if your daughter went into hospital, you wouldn't want to be able to go, but they would not resuscitate her

And that really meant that you behave in a particular way. Would you Would you share with me what you said earlier? Um, I think the fear of me being in contact with anybody from the outside world in whatever capacity, whether they left the food outside the washing of those goods and disinfecting them and washing my hands, the process itself of doing that became a fear. I mean, I became sort of almost like I had o CD where every single time I knew somebody was coming

It was like I was cloaking myself with a cloak of before I got to the door because, Oh, God, what's that gonna have in it? And where did they get it from and what did they do? And what were they wearing? And or even if people were helping me, I no longer I appreciated the help. It was all about cleaning these things, making sure that they're safe, not guaranteeing they're safe. And actually, uh, they come through the house

And so I had a system in the end that I created where all the things that were coming through the door were left in this black bag with everything disinfected, for God knows how many days. So some things went bad, because then I was fearful of Oh, my God. Did I leave it for enough time? Oh, no

I'm not sure if I should bring that in just yet. And do you know, do people realise that you cannot have that much pressure and not break down? There is absolutely no way that you can sustain that. Can you tell me about the why you wrote that? You know, you said you wrote that letter because you felt that the you know your words, Um that the world has forgotten you and your daughter and that you were convinced that you would die without anyone even knowing that you were dead

Like, How did you get to that point? I think it was because one of the evenings that I was unwell. And I myself experienced difficulties even surfacing from my bed in the middle of the night, not wanting to wake my daughter because I could not literally get out of the bed unless she helped me to get out of bed and then when I realised that also, she's unable to sleep in the room because upstairs where we're living, the noise levels are so high for her that she's also going through a stretch of nonsleeping at night, which I wasn't aware of at the time. And it became she was so catatonic about my state that she became very, very convinced that her mother was going to die

I can't even get my mom out of the bed. So it sent me spiralling into this whole thing of how my goodness, I have no one in my life who I can literally depend on. And if I can just have that one person that I knew and trusted enough to take over from where if I dropped it this night, that's how it felt

And I just thought, No, no, I want to be made to feel that way. I know it's all wonderful to put all those emergency services on paper, phone this person, do this, do the other. When you are in a crisis that doesn't translate, you have not got that capacity to philtre through all that information to act on it in the middle of the night

What did you write in a letter? Well, I think I more or less described How does a disabled person look after another disabled person in the same household? That's my title ability to function and just do the basic things of getting myself, my personal care, her personal care, all of those things coordinated in this isolated world where you can't even accept the support because no one is allowed to come in through your doors. And you, did you ever try to make contact with services? And if so, what was that response when I think the only time I did try to get to do that was when I was unable to get anybody to help us with food. Then I rang this number, which was always engaged, and that was it

It was engaged. So having to think outside the box, how else to do that? I had to get somebody who was not ringing from this area to do that for me from another area, then finally manage to get something triggered that I needed support with that, and that's for a support, a friendship network, a friendship network. If I didn't have that Friendship Network

I don't know what the hell would have happened because I have no family here. She you know, this is my family. This is my daughter

And we're both in that situation where we're helping each other as much as we can. But there is no infrastructure in place to support people like ourselves. And I think maybe the expectation that somehow we'll manage and cope because we're in the system is a fallacy

Hm? Can I ask you about sort of the messages, the supports? You talked about receiving goggle letters? And how did you access all the information around what to do? What? And the shielding information, the lockdown information and yeah. What? How did you make sense of that? Well, to be quite honest with you, the amount of paperwork that came through the post for us was such that it didn't make sense for me individually to process and understand, because I didn't see where that directly led me to. So what, in an end, I ended up doing is either spending some time with friends on the phone, going through those same paperwork that I've just received to see if I understood what I was reading

So between having to photo photocopy something, send it to somebody else, maybe by phone, to read and see Well, what is this? What is exactly is this saying, Because I'm not sure quite what it means. The amount of effort and amount of people to change this one light bulb became 10 people changing one light bulb. I cannot imagine people who cannot read or write or even have a capacity to be able to have that foresight to contact a friend to help what happens to them and W w what? How How did you feel about sort of the sort of media and all of that coverage of covid? Because I know we spoke about how angry you were with different people having different rules and stuff

I've got friends all over the country, and they all have the same position I'm in if that maybe better, because they've got partners. But every single time I rang somebody, let's say from Cheshire, which I I know she got a disabled daughter. Her rules were different from ours

So when I was talking about the difficulties I was experiencing here, she became quite concerned and she said, Well, I haven't got a problem with that. We've got this and I haven't got a problem with this. And I said, Well, how did you get that so? Well, our our council has provided this and this and the other

And I said to her, So when did you get your information? Oh, she said as soon as Covid came, they gave us, you know, easy read letter. And they signposted my daughter with pictures and everything was sent through the post. So we had everything there for her to see physically and visually what she could do

I was absolutely gobsmacked. And I'm thinking we've got the same Head Rovers are about the same age as mine. So what is the problem? Why can't we have the same standards upheld? Hm? And how did it make you feel knowing that there was all of this? You you like mixed messaging coming out from the the news and the government

I just was in awe of what would happen when all of this is over. Are we gonna get back or continue to be led by the nose with not understanding what we've been led to or are we gonna be given a little bit of support in actually disseminating this information all the time is why is it so hard to accept that none of us are in a linear state? All of us are individuals. All of us have got different, um, disabilities and needs and that some of us may present as if we understand, because maybe that's how we look

We don't have to end up. I'm sorry to put this this way. We don't have to end up completely in a wheelchair to be identified as disabled

There are mental health issues here which are not visible, that no one is allowed to broadcast or may be made to feel even less than if they broadcast. You know, ours was compounded here with a mental health status, but plus plus plus So just because I am articulate and I can actually speak, it doesn't make me an enemy. It just makes me a voice that my daughter conned with to express her needs

Never mind mine cause mine have been described disregarded from the beginning. So let's not even talk about me. So do you think the things that happened it it during Covid and the expense of disabled people were historical things that were already happening

Absolutely. I mean, to be honest, there was a point in which I thought, Oh, there's hope for learning here. There's gonna be something that will come from this experience which will carry us forward in a better way

My goodness, I don't understand how we could have missed the chance of changing things because of what happened to get a better footing on the future. But as it is, we're just I don't know. We're reinventing the wheel and not learning anything from the experiences and then blaming covid for whatever is brought on because it's not covid

That's brought the situation we're in. We're carrying on from where we left off and and where is that? Where did they leave off with disabled people? I think again that it that we're just a nuisance. We we We're just people that actually have been disregarded for quite some time, and it's no longer an issue

It's something that they it's a thought on their side. Basically, the government just thinks we are really a pain in society that needs to be put a poly fill, rub against it or or or soon get better. And that's it

That's how it feels. Yeah, And can I ask you to share with me what we spoke about when you said that you felt that it was like a social culling, cleansing older people, disabled people. And you really believed? I mean, you spoke about, like, the the care homes and knowing that they were discharging people

But do you wanna talk about that? Oh, she was so heartbroken because I'm not of an age where these things don't directly affect me. I am. And therefore, if what is done as a standard format for the management of people who are already compromised and be made to adhere to rules which make no sense to them if they've got dementia or if they are incapable of physically doing anything or if they're on their own and they are in these places where the limitation and the barriers are made even higher

I just was my I was heartbroken right through the period because I could just see myself in that same position down the line because I there was no hope they didn't give enough credence to the need to literally put themselves in those families who had people in those places and those families who were in absolute pain for being in their homes. Watching all of this, whether it will be remotely via a window or via the system on the video, and not even having the appliances in some of these houses to enable visual contact that is criminal. Can I ask you, Do you really believe the the government actively knew discharging people into nursing homes and care settings with covid was intentional? Do you really believe that? Well, I think if I were to be honest from the time we started having aged differentiation on having the flu vaccine, my antennae went up because there is absolutely I know this is all conjecture

But when you start isolating a certain group of people to be treated a certain way, there is a plan in place. I don't care who says what. They can lie and cheat and say whatever they need to say, but ultimately there is some system being implicated in in instituted right there from that point on, because there is no need to differentiate between people of a certain age when they have have a certain condition or not have a condition because of that age, you're discriminating against them or if they've got a certain condition, you discriminate against them

There is no need to separate people. And if we are all doing the same thing and experiencing the same experiences, is there a need for you? Then when we do phone the doctor about this person and that person because of the age they can't receive this And because of this, you know, discharge rules we've made up along the way under the radar. We put in this D N r thing, which means families who are not familiar with the law

How are they meant to access that kind of con to find out the truth as to what they can do to support their loved ones. No one gives you the information beforehand. So she said to me that like the d

N. R. Really affected you because you thought that your daughter would have AD n r place to know if she ended up in hospital, right? Absolutely

And then when you we were talking earlier, you you were really strong about they knew like that. They were discharging people with covid into care settings. How? How did that like I? It's just so like, even just talking about it's so profound, like knowing that you've got this group of people that are being discharged into settings where it can affect other people

I'm not sure that any I'm not saying the government may have been completely prepared. They could have done it better. Surely, because the minute you have no resources in place for those people to be discharged, you shouldn't

It's simple. Why is it that you feel it's OK? Because there's not enough hospital bed because of covid? If they're still carrying any trace of that condition of disease, why put them amongst people who've got nothing going on? They've been protected enough to live for that period of time without any problems. Then you expose them

So what are you trying to say? Their lives are not worth it? What is going on? You know, it's just wrong. I don't know who makes these decisions. Honestly

I find it difficult the government we've got leading. I'm not talking about what's going on right now. It's been going on for a long time

Can I ask you, Um, so the covid in the this these videos are gonna speak, and they're gonna share the living experiences of people through the pandemic. What would you want to tell the inquiry about the experiences of disabled people? Deaf and disabled people and carers. Um, what would you tell the W? What messages do we need to put forward? Oh, that's a large area to cover in this one short little moment we have

But the one message I would definitely love to expect express would be we're not a useless commodity. We have put into the system with our abilities when we were able, we have contributed to this country in some format, whether we are 80 90 or whether we are 20 disabled and not able to perform as much. Now we are still people in our own rights

We are individuals who make the the population of this country. We are not a non-entity. Mhm

Thanks. Um, can I ask you? I've got a couple of fun questions. So there is a lot of talk about a post pandemic world or covid now being something of the past, what does the post pandemic world feel and look like to you and your daughter

I don't think there's any difference. To be blunt, I think the trials and tribulations we've experienced, we're gonna go through them again. I don't have any hope at all with anything changing

I just fear for her growing older in this. I mean, I'm about to check out, so it's OK to to be glib about it, but in reality, there's nothing for these young people to actually be able to say, Oh, my God, they've got hope. Nah, I'm sorry

I'm saying Nah, as if I haven't got anything to say. But really, we are just regurgitating changing this changing that. But none of it is ever stuck to for long enough to make an impact

Did you have anything else you wanted to share about the Covid pandemic lockdown and your experiences? I feel very strongly that it was taken at the beginning with seriousness of the repercussions from it in some format by the government. They had an idea. We have to somehow manage this

But then it became an excuse not to manage other areas because of it. And that is what I find we are having now to live with the excuse that things now cannot be improved because of covid. Thanks

Um, I don't have any further questions. Do you have any further for me? Well, I would love to know from this conversation with you. Where is this taken to And what will it be? How would I be fed back to see if there's been a change here? So this, as, as you know, from the consent in our previous, uh, discussion will feed directly into the covid inquiry

We're collecting a number of stories to bring the everyday experiences of deaf disabled people carers to the covid inquiry to really highlight what the challenge is because we don't want this to happen again. And we want to make sure that these stories are central, um, disability rights. You came

People social media have partnered to to make sure this happens. Um, we we spoke about you and being invited back to do some sense making, looking at different people's stories. But this is gonna be an historical account

Um, along with being fed directly into the covid inquiry. I can't. As I said earlier, I can't say that changes will happen because I'm I'm not the covid inquiry

I'm not the government, but I think from my experience, when people hear what happened to people, these things do have an impact. OK, now, the last one I want to ask is as we are living in all different counties and each county has its own laws and regulations and will we then be taken as the people that will be, uh, watch out for this one, because I've I've voiced my opinion here right now, because there's that fear, which means people are not telling the truth because they are fearful of losing whatever little bit of support they have. I suppose if I'm honest, your question At the beginning, when we had our pre session and we went for the consent that you you're at an age now, you felt you needed to speak out and you weren't scared of the repercussions

Um has made me feel like a lot of people might not want to come forward because they might feel and you said this, that the government would victimise them and that they would lose a lot of things. I think it's something we need to be mindful of, and the fact that you've included it here, I think, is important. Do you want to share with me what you said? Because that would be really useful

The ability to express oneself in circumstances like ours, which are dependent on the county's A allocation of funds in whatever capacity means that it becomes a treasured commodity that no one wants to distribute amongst others, just in case it's completely swallowed up in another way and not allocated directly to the person. Which means what I'm trying to say is, if I've got other friends with the same amount of problems who don't want to open their mouths because they are scared of the repercussions, how many of those people are they out there? Well, as you said, you know, many, um, and I think it's a real point that people are scared to talk up. Yeah, yeah, I mean, who knows where this would lead? And I honestly and truly I'm ready for anything because I seriously am passionate about living my daughter with the knowledge that she is supported in the community

She deserves to be here. Absolutely. Thank you

And enough for your time. I'm gonna suggest that that's a good place to end. Can I stop the recording there? Thank you


This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.