Orla tells Isaac how one of her children who have disabilities was disadvantaged compared to his brother and sister during COVID and the serious impact that had on him.

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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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social care professionals, together with the difficulties Deaf and Disabled people faced when support and services were withdrawn by local authorities.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.

What? Got it. Cool. Can you tell me a little bit about yourself? OK, so, um, I'm a single mom of three kids and my, um 18, 16 and 15. And, uh, my 16 year old was diagnosed with disabilities when he was about two

Um, we live in a beautiful coastal area of county down in Northern Ireland and just on the shores of the Irish Sea. Um, I'm a community Children's nurse by background. So I've been working in Northern Ireland Health Service for about what was it, 23 years in 2012 whenever I fell out with the health system and decided to set up my own social enterprise called Parent Action, which provides independent advocacy services for the parent carers of babies, Children, young people and adults with disabilities? Um, yeah, that's that's about it

Um, do you want to know more details? Um, I'm 50. Almost 51. Um, yeah, and And what makes you tick? So what? What makes you happy? Oh, um, my kids and my work, my kids are my work, and we do sea swimming

Um, even in the winter. And we love it. Um, that that keeps us ticking

over. Um, I'm a yoga teacher as well, and I love music. So that's about it

Yeah. Thank you. I'm sure there's lots more when I get time to do it

You know? Do things like you other than work? Yeah, those things. So this project, So thank you for sharing about your life. So this project is exploring the experience of deaf and disabled people, some experiences of the pandemic

So So what impact did the covid pandemics and lockdowns have on your life as a deaf or disabled person or a family member or the person you know as a carer? So I suppose I forgot to mention that I'm both a car and, um, a service user if you like. So I've had, um, difficulties with my mental health for at least the last 10 years. Um, secondary, really? To me, Falling out with the health service? Um, I I was an NHS whistleblower

Um, and, uh, I suppose being a parent was the thing that I suppose has has sort of saved me in the covid pandemic, but through those last 10 years as well, because I don't really have time and just to give in to the pressures and the feelings. That and the struggles that you're having because there's three little people who rely solely on you for everything. Um, especially my son, who has disabilities

So he had awful trauma being excluded from school and being excluded from community health services simply because of his disabilities. Um, over the last 10 years as well. So that was happening around the same time

So, um, when COVID-19 hit, we were sort of used to being isolated. Um, you know, not having any money not being able to go out to work, not being able to socialise because, um, of my illness, but also mostly because of my sons, because he had quite a lot of distress behaviours he chronic mental health issues as well, because he never got the supports and services that he needed when he needed them when he was younger. Um, so his brother and sister have had to live through that as well

Um, so it was actually a wee bit of a holiday. We felt very sorry for all the people who suddenly couldn't do normal things, like, go to work and, uh, you know, go out to the shops. Um, but we we have always struggled with that

So that was March 2020 and my son was actually had been recently excluded from a special school because of, um, some of his distressed behaviours had caused health and safety issues for staff and all the Children in the school. So I had no choice but to take him out of the school because, um, so that was a couple of weeks before lockdown. The first lockdown, Um, very emotional, very distressing meetings with school, Um, and then me sort of being left to manage his behaviour at home with the other two

Mind you, the other two were out at school, and then the 23rd of February 23rd of March 2020 happened, and all of a sudden the Children were not in school and nobody knew how long there was not going to be any school. And we had our first minister talking about. It's going to be six weeks, you know, And the kids went back to school six weeks, and, um so we actually had a bit of a the first month or two

The weather was lovely. I remember that We live right by the sea, and we were on the beach every day and we were out, you know, because we can just get there without going anywhere near anybody. And everyone's talking about bubbles and washing your hands and trying to get ASDA to do deliveries whenever there's like two week long waiting lists for food shopping

So that was that was really stressful for me, but not necessarily for the kids in the initial weeks. Um, yeah, so that that was the impact wasn't too bad in those initial few months. In answer to your question, it's just when it dragged on dragged on

Um, there was all sorts of things happening here in Northern Ireland. Um, our wonderful health minister was doing what he could, you know, to mitigate everything that was going on. I mean, I think I've blanked out most of it, but like I say, I think we were fairly resilient to the isolation and the exclusion from things, because it had been happening to me and my Children for years, coming up to the first lockdown

So, yeah, how did you make sense of what you needed to do as a family during that time. Oh, that's a good question. Um, yeah, as a mom, Uh, it was all about, you know, trying to keep them calm, which is really hard for someone who has, you know, anxiety

Anyway, um, So my daughter was of a good age, so we could just, um my my youngest son, you know, was of a good age. We could we could sort of discuss and explain things. Um, my son, who has disabilities, wasn't enjoying school anyway

Like I say he was. He had just, like, three weeks before being excluded from school. Um, because just the school wasn't getting the proper support to support him, and he was just frustrated

So he was really enjoying it. How we made sense of it really was those first three weeks. I don't think the TV was ever off, you know, we were listening to the news and trying to work out what on earth was going on, but we did it through discussing it

The three of us, my my eldest daughter and my youngest son, Um, and just trying to for my middle child, Finn has disabilities. Was just trying to maintain some sort of a routine. So that was quite easy, Like I said in the first few months

But come July and August, which is an eight week summer holiday here in Northern Ireland for the Children anyway, and Children with disabilities don't get access to any, you know, summer schemes and stuff like that in this area. So then, um, always find July and August hard. I think it it hit him by the time we got there, making sense of it was just trying to keep him calm, to be honest

And it was the three of us on our own. We had no access to anybody for any help. But then again, we never have had Isaac

So it just wasn't It wasn't really any different. It was just that that the other two couldn't get a break from caring for their brother because there was no school to go to. Yeah

Did you expect that things would be different in covid that services would step up or people would make contact? That's a really good question, because, um, I my head was about to explode. Come sort of the end of April. And there was a new, um service launched for, um, child care

Um, in schools, for the parents or for the Children of key workers. Um, and I was a nurse, and I had just taken on some work with the Northern Ireland Children's Hospice as well about a bank work. Um, with them, um, and the schools were open to Children of key workers and vulnerable Children, particularly which I thought included my son

Um, So when I saw this on the news of the Department of Health website, I phoned the education authority and was told that my son had been risk assessed as being It wouldn't be safe for him to go back into school even though he desperately needed to get back into that routine in his special school. So I asked also for my younger son. My My daughter actually was supposed to do her g CS e s in June of 2020 and she didn't as a result of covid

So that was really difficult trying to, um, get support for her online. And our broadband connection is really crap out here as well. Um, So I was I was trying to deal with her stress

Um, and I reached out for help to try and get both my sons a school placement. Um, within two weeks of me requesting a school placement in a local primary school. My son was in year eight at the time in a local primary school

My son, who doesn't have disabilities, was placed there. But my son, who does have disabilities, wasn't given anything. He was effectively in lockdown

He didn't get any school or anything. Um, until the beginning of November, when we found a new special school from him for him. So in answer to that, should services have stepped up? Yes, I expected that

This is what was this meant? Children with disabilities are vulnerable. Therefore, he should have got a place in school as a matter of priority. His brother, who doesn't have disabilities, did within two weeks, and he was placed at nine o'clock to three o'clock was the primary school

And there was only three or four Children in that post primary and primary school. But it gave him routine. It gave him a break and gave him talking to other adults

Gave him a break from caring for his brother as well. But his brother and me were just left. We were just left and his sister, we were just stuck here

And what impact did that have on your mental health and well being? Chronic. Chronic. So my my son then tried to commit suicide twice, and my my daughter's in the other room, so I keep my voice down

He tried to commit suicide twice. The first time was in the beginning of June. Um, I think it was as a result of me going out because I don't have, you know, I'm the only adult who could care for him, and my ex-husband just wasn't around

He just abandoned us for 2020 the Children's father for the whole of 2020. He just wasn't there, you know, um, so Finn would come with me to leave his younger brother to his new school and constantly ask, Why aren't I going to school? Why is Jude going to school? And I can't go to school. And his just his behaviour escalated

The only break out of these four walls that we got from May 2020 right through to November 2020 was a 15 minute walk on the beach. 20 minute walk on the beach, him and me every day. That was it

There was no therapy. There was no counselling available for him. We tried

It just doesn't exist. Um, because he has communication and speech and language difficulties as well, um, as his mental health issues and there was nothing for him to do. I had to try and create a routine and a structure for him within these four walls for nine months

And I don't I haven't even really explored the impact that's had on me, to be very honest, I think because when you're in the middle of it, like I often say to parents, is you're in survival mode like hundreds of thousands of parents all over millions of parents all over the UK. You're just in survival. But when you have a child who has disabilities, you're just getting from one minute to the next minute without major disaster and trying to keep him safe

So, um, he I just came to a point in June. He couldn't He just wanted to die. And he was able to say that I just don't want to be here anymore

And, um, he ran out into the road in front of a lorry. Uh, at the beginning of June, just I looked around, and somehow the front door key had been left in the lock and the doors that had to be locked, you know, to stop him leaving the house. I looked around and he wasn't there

And I looked at the living room window. I can see where it was. And he was standing in the middle of the road right outside my living room window across the white line with his arms spread, and I screamed at him and I jumped the fence and it took me 10 or 15 minutes to pull him off the road

And thankfully, there was no traffic because we, like, live in a very rural area, but and and that was nobody could do anything for us, You know, I phoned the GP straight away after that. What am I going to do? Somebody has to help me. Blah, blah, blah, blah, blah, blah

And they said, Look, there isn't anything you could you know we can get him online counselling. I said he or online counselling or telephone counselling for the child he can't speak, you know, and he certainly can't speak when he's unwell. Um, and that was all that was offered

And we survived that and then happened again in August. He ran out of the house and took off down the road with me running after him, and he ran for 2.5 miles

I was just running after him, and then he was exhausted and he just stopped and I called into a neighbor's house and they got us in the car and brought us home. Does this does this? Did it? Has it been a surprise? The response to supporting that was that a surprise? That there had been no support? No, But it was. It still was a shock, you know, because I knew that through online contact because I was still obviously working and running the advocacy service

I was trying to trying to help people, and that's where I get most. All of my support, I'd have to say, was from working with other parents. And no, this is this is since my son was diagnosed 2

5, you know, the chronic absence of services for Children with disabilities was not a surprise at all. but in this were a public health emergency. We thought things would be different

And it did start to come out. Sort of, um, you know, in Stormont, in the Health Committee, particularly in the education Committee, how much Children with disabilities have been let down during that time and how much their parents have been isolated. But, you know, this is what I'm hoping the COVID inquiry will explore because I know what's come up already in the covid inquiry about particularly about how education was managed in all four countries

Um, but here in Northern Ireland, you know, that is where my experience was and you know it. It shouldn't have been like that. It shouldn't have been like that

And so many families, including my own. You know, we still don't you know, we're sort of expected to pick up and just get on. And, like I was saying, straight after the pandemic came the cost of living crisis and, you know, there's no help

There's no anthem for anybody. So, um no, it's not. It wasn't a surprise, but it was still a shock

It was still a trouble. Yeah, absolutely. Can I ask You do you have

Why do you think there's been this lack of historical support? And why do you think that people with disability and Children with disabilities just didn't get any support? What? What do you think is behind that? Well, I suppose I can only really speak. I've worked with Children with disabilities as a community Children's nurse for like, I say, 23 years up to God. That's very scary

How long am I registered Children's nurse? Now, Um, right up until I left the health service in 2012. And I sort of still am, um so I do know. Basically an answer to your question is there is no assessment of need

There is no identification for a start. We have the Children's Order Northern Ireland Order over here since 1995 which is, you know, basically your Children's act of 1989 which clearly sets out what should be done for Children with disabilities and in Northern Ireland. Um, you know, the patriarchy has been too busy trying to kill each other and blow blow themselves up since way before 1995 and you know, that's why Children's services and services for women mostly most parent carers are women

Parent mothers are the ones who give up the jobs to look after the Children when they have disabilities. You know, we just we just don't feature on policy agendas and we haven't had a government. Really

We've had a government for, like, six years in the last 25 since the Good Friday agreement, you know, because it keeps collapsing where, where it is collapsed at the moment. So Children always get the scraps off the table. Children are not valued here, and that's all Children

But also, you know, when parents try to speak for them, um, parents are victimised. Then for doing that, parents services are removed. They're denied access to support

It's a whole culture of lack of value, of women and Children. You know that exists all over the UK. But it's also a lack of value of people with disabilities

You know that they are just a burden on everybody. And, you know, why don't you just go and be institutionalised in your own house? We couldn't be bothered with you. Um, and that that comes out in the fact that there's no services commissioned for Children with disabilities in Northern Ireland, including education services

Because we don't know how many Children with disabilities there are here, I'd say it. It's similar or different across different local authorities in the rest of the UK it all comes down to, if you don't know how many Children are with disabilities are right there, and they have assessed their needs. How asked, You know how to spend public money on services that are going to meet those needs? You don't know what the needs are

So that would be my experience in nearly 30 years. Working with Children with disabilities, um, and their parents is we just not heard, which is the reason why we set up our advocacy service to try and empower parents to have a voice on behalf of their Children's rights in vital public services. So, um, it's because we're invisible it because we're in visible and that actually came really to the fore

And we were really busy over covid lockdowns because, you know, it's that old quote that I love you and I don't even know where it comes from. Um, crisis is a tide that goes out, um, and reveals who has been swimming naked. And that's what happened with a lot of groups, particularly Children and young people

Um, everybody got so much of an insight into Children and young people with disabilities, lives into parent carers, lives into carers' lives into older people's lives. Because when we suddenly realised, with this new online way of seeing the world through covid, how many people are just have been aband, um, by the statutory services who have a duty to look after them, and so so that that would be my reasoning on it, Really? And it hasn't really improved much since lockdowns ended. You know, there's always other priorities

You're jumping way ahead, and my next question would have been there is all of this talk about post pandemic world. What does this feeling look like to you and your family? Post pandemic world? I don't think we are Post Pandemic. Yeah, yeah, I'm sure a lot of other people have said that we're living with it now

I got a text this morning from a friend who was in Glasgow for the weekend with her daughter, and she's had to go off work because she's covid positive. She's a nurse as Well, you know, Covid is here to stay. The pandemic is not post

Um, we we have to learn to live with it. Um, you know, I still go in to visit families who have Children with complex disabilities, and I wear a mask, and I'll even put a plastic apron on when I go in there and I won't touch anybody and try not to touch anything, to not bring bugs into the house. It's It's It's the way we have to learn to live now, um, particularly around vulnerable people and disabled, deaf and disabled people

We have to appreciate that some people are still in lockdown, you know? So we need to stop talking about Yeah, that was something that happened in 2020 2021. It's still here. It's still life for so many people

It's still causing serious problems for Children, particularly, and and workers who have long covid, you know, they're having to adjust to a new reality of disability. A lot of them, um, who are living with long covid, and there still isn't the supports for them. So I think that's a fallacy we're not going to be

We're not going to be in a post pandemic world ever. You know, until the next one. You know, we just we've had to learn to do things differently

Um, yeah. So what? Yeah, What do you think we've learned? Um, from the covid pandemic and lockdown. So have we learned anything from Covid and the lockdowns? Um, yeah, yeah, I I think we have learned

We have learned that there are huge sections of our society, particularly disabled people and their carers who have been like one carer put it to me, institutionalised in their own home for decades. And we have learned that we need to include those people in their communities better and safer and more. But I don't know if we've even begun to look at how we can actually do that

You know, um, if there's any learning from the pandemic, it's for me. Um, it would it would be that mommy is always right that, you know, this is this is what we've been saying for years, as parents, as mothers of Children with disabilities, that the level of isolation and exclusion that everybody faced is what people over the over the lockdowns. And then this you know ableist discussion about the post pandemic

This is not over, and it has been in existence for decades for people with disabilities and their carers, you know, and it's just it's just gonna continue. The the I will say that the COVID-19 pandemic gave us online communication online working, hybrid working and that has just opened the doors for inclusivity, of people with disabilities and their carers to get back into the workforce to start making their lives better for themselves. So that's one positive that's come out of it

Um, but I have a horrible fear, like everything else that will just tittle away off again in 10 or 15 years time. I just I don't need to do that anymore. I'll get back into the office and then you'll see people with disabilities excluded again

It'll just, you know, go in that cycle unless we can sort of tie down the learning on how we do things you know and expose a lot of things like, you know, corruption in public bodies and governments because all of their processes were under such scrutiny and will be now in in the inquiry. Um, I'm thinking of P p I particularly and procurement of it. And, you know, that's how that went on pre pandemic

But there was so much closer scrutiny of it on How do we do this in a crisis? Um, that I hope that we'll we'll have learned to be a lot more transparent and a lot more honest when it comes to supporting the population here. Um hm. Yeah, I think I think just you know, powerful people are going to find different ways to hide their bad behaviour, you know, because they always do

Yeah. And so my final question before I I I'm gonna ask you, Do you have any other questions for me? Is what would you want? The covid inquiry to hear. So what are the messages the COVID inquiry needs to hear? I would say, first of all, that this country was not prepared for the for the pandemic, even though we know that they should have been that they were having prior warning there was stockpiling of P PE and emergency stuff and all that, um and the fact that other priorities other than people with disabilities and their carers and families, the most vulnerable in our society were not properly protected must never happen again

Where you have to take that learning from that, what went wrong? And we're now beginning to understand why it went wrong and it went wrong because there's a huge power imbalance and people with disabilities and their carers have absolutely no voice and the services and the supports that they need at the in their homes and in their communities. They have absolutely no voice, and that has to change. Um, and also we need to see from the covid inquiries work

What harms were actually caused because of those feelings by our government by our statutory systems, what the impact was, what it's going to continue to be and that it's long term and what the government is going to have to do to make sure it never happens again. Because we're going to get another one. There'll be another pandemic, you know, down the line, Um, and what we need to do now to prevent the harms that were caused because this one was managed so badly and so many people died unnecessarily and suffered and still do it Any further thoughts that you wanted to add? Uh, no, not

Not really. Uh, it was such a huge big thing, and like, I suppose we're still living with it. Um, still coming out of it, I think it's made us stronger as a family

Um, because we all had to pull together, and we really, really did. And it was very, very tough because we're pulling in different directions. So, um, there I I really appreciate this piece of work that you're doing, Isaac, because it's so important to look at what we have learned and what we've gained from the experience of the pandemic, everybody and how we can continue to be connected to make sure that the next time it happens that the harms are much, much reduced

So, you know, we're all stronger. We're all clever. We're all a hell of a lot wiser

But we need to be listened to people with disabilities and deaf people particularly need to be listened to about their experience. So, yeah, that's about it. Any questions for me? No, Um, I'm I'm probably going to email you, though, because I'm very interested in connecting up with community reporting around some of the work that we're trying to do

So um, but I'll get back to you about that, um, via email, just to see how we could link in. Um, they're called parent care stories, and they're Northern Ireland based. And what we want to do is we're starting to record them, and we're going to put them into a book, you know, for the same sort of reason

But But link in with community report, and hopefully, I hope I can do that. Brilliant. Well, I'm gonna stop recording there


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