'I've lost all of the independence I worked so hard for'

This is the full transcript of Ouch - 'I've lost all of the independence I worked so hard for' as broadcast on the 16th July 2021, and presented by Keiligh Baker.

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Keiligh - Hello and welcome to this BBC Ouch podcast with me Keiligh Baker. July 19 is the slightly delayed so called Freedom Day in England when the remaining Coronavirus restrictions come to an end. The rest of the UK is set to follow in the weeks to come marking an end to most of the legal COVID restrictions, including social distancing mask wearing, limits on meeting up and allowing nightclubs to open. But for many disabled people, they're worried that as the world opens up, they'll get left behind. According to the charity Sense, more than half of the disabled people that they surveyed are worried about their health, and more than a third are anxious about being able to comply with safety measures. Joining me to discuss their concerns around the lifting of restrictions is Natalie from Ebbw Vale in Wales, who has Usher syndrome. Hi, Natalie, thanks for joining us today.

Natalie - Hi, thank you.

Keiligh - Could you remind us what is Usher syndrome?

Natalie -  Usher Syndrome is deaf and blind.

Keiligh - I'm also joined by 17 year old Saihan from Mile End in Tower Hamlets, who is autistic and has developmental coordination disorder. Hi, Saihan.

Saihan - Oh, Hello. Nice to meet you, Keiligh.

Keiligh - Nice to meet you too. Now, Saihan, development coordination disorder. Is that what we used to call dyspraxia?

Saihan - Yes, so from for my own knowledge, and from what my mom has told me. Previously, it's been known as dyspraxia but because of NHA changes and updates, they have renamed as Developmental Coordination Disorder.

Keiligh - I see and how does it affect you?

Saihan -  So from my own personal experience, experiences, living in Tower Hamlets, in East London, it’s quite difficult, because it's just that I find it hard to move. So this means that so walking is difficult, because I have leg pains and sometimes I might accidentally barge into or hit into someone and I might hurt myself because I can't walk straight in simple forms or do anything the way that other people do. I just need more space.

Keiligh - We've been waiting for over a year for restrictions to end so let's dive right in. Natalie starting with you, how is the pandemic panned out for you?

Natalie - It's been horrendous. I just, have lost all the independence I worked really hard for, I just felt, just forgotten about.

Keiligh - Have you been shielding over the last year and a half?

Natalie – Yeah.

Keiligh - Me too. So it's a strange experience isn’t it.

Natalie – It is, like I said, I thought I was lonely before but this is totally totally different.

Keiligh - And am I right in thinking were you pregnant for some of the lockdown as well?

Natalie – I was yeah.

Keiligh - Yeah, I bet that was even harder as well

Natalie – It was horrendous, absolutely. The pregnancy was fantastic. But everything else was awful.

Keiligh - How about you Saihan? how was the pandemic for you?

Saihan - Yes. The pandemic has been really difficult, as I didn't get any social time. Obviously with the situation, the pandemic, and because obviously I find hard to socialise and other issues Sense has organised a sort of buddy friendship system. So, in Tower Hamlets where I live, I used to go with my buddy, but then because of the pandemic, I found a really tough and because of sort of social issues and you know health issues. We couldn’t go out and we had to cancel it and then it went to virtual online but it's been really difficult as well

Keiligh - And were your GCSEs cancelled Saihan?

Saihan - Yes, I was due to do my GCSE’s, which is basically an exam you do when you're 16 in England, it was really really stressful and I knew my GCSE’s was cancelled. And my next step was to find a college even that I was finding it tough because I didn't know what's happening. I didn't have my grades. I did find the place but it was really stressful on me and around the country, as well and rest of the world students like me have found it very difficult just to get to where they want to be really,

Keiligh - Definitely. I mean, obviously, it's completely unprecedented and young people have been particularly affected by all of the upheaval.

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Keiligh - Coming back to you, Natalie. I mean, Wales is slightly different, you know, we're not they're not completely relaxing as they are in England on the 19th. But obviously, they have relaxed quite a bit already. How are you going to take advantage of the relaxation?

Natalie - what I've been saying for everybody, even though the restrictions are lifted and quite a lot, it doesn't feel like they are for me,

Keiligh- so it hasn't really relaxed for you at all?

Natalie -  Not for me at all. No.

Keiligh -How about you Saihan? 

Saihan – It’s great that you can do more and more things. So with my buddy in theory, I could go out and no, no social distancing, less of safety and risk measures in place. In reality it’s not the case because I'm still scared of the virus. I think that people need to be more aware. I think issues like physical disability like being in a wheelchair or having like being blind or visual impairments, people can be more helpful, as well as development cognition disorder, living a life in London, which is really really busy, Lots of people, like 6 million people don't really understand. And sometimes as I said, before I bump into people that's really difficult. Now with freedom Day, more and more buses are very busy. So me getting around is more tense because I can't coordinate myself.

Keiligh - And Natalie, back to you. With your day to day life. Are you able to get out and go shopping? Go to baby group with the baby? Or is that all still on hold for you at the moment?

Natalie - It is still on hold at the moment. Obviously, I can't go shopping on my own my husband, I have to go with him. But no, the baby group, I haven't been able to do anything at the moment

Keiligh - For you, Natalie, does your impairment impact on your ability to wear a mask?

Natalie - It does. But I still wear it purely just because I can't handle the abuse, the looks I get for no wearing one. So I wear one and I suffer.

Keiligh - And Saihan, how about you?

Saihan - I do not wear a mask because of breathing issues. And the recent sleep study tests I've done in the hospital say that I have low oxygen levels, which explains why I couldn’t wear masks, but even going out some people don't really understand about the reason.

Keiligh - And then Natalie, with you, you've said before that you struggle because you lip read. So is that something that when you do go out? Is that affecting that aspect as well?

Natalie - Absolutely. So I noticed that one thing, but for me, I could be able to tell people that expression, you know, just by looking at them, I can't do any of that, you know, with a mask is just people mumble terrible. And I just, I just can't understand a word at all. To the point though, I get anxiety, you know, I get really panicky it’s just a lot to go through.

Keiligh - Yeah, especially if you just tried to do the shop. And that's already sounds like a fairly stressful experience. And then on top of it, this element of not being able to communicate as well, it must feel very, really stressful.

Natalie - It is, you know, not being able to see very well anyway, on top of not being able to hear, you know, the two main things to be able to communicate and you know, I haven't got a lot of either of them. So yeah, it is really very difficult.

Keiligh - For you Natalie, what are you most anxious about when it comes to the restrictions lifting fully?

Natalie - kind of building everything backed up, confidence wise, for me, I think. More than anything, I just want you know understanding and it's really important to try and get out, you know, what disabilities are about, what we need. And, you know, we want to live normally like everybody else and be independent. But unfortunately, we just need a little bit of help along the way.

Saihan - I agree with Natalie's point there what she said, personally, what I'm worried about is how it's gonna affect my sort of next set of exams, which are the A Levels,  because to find the right University and right job, work career, what's gonna happen with my education, what I would like to say is, you know, all disabilities should be treated with respect and understanding, obviously, as a society believe that we should improve,

Natalie - like, you know, people just think oh, you know, it's all pity, pity and feel sorry for you. And, you know, we'd love to be able to live our lives, same as everybody else. But unfortunately, a lot of us can't in any way or the other. You know, it's just to have a little bit of understanding, you know, so that we can be like everybody else. Just being able to go out with a baby, really, to be honest. I'm just looking forward to be able to go and be able to do things for her and not be anxious, not be worried. You know just to be able to have a normal day. 

Keiligh - when restrictions do lift in Wales? How do you think businesses in the public could help disabled people who continue to feel anxious, when they're out and about?

Natalie – Just to be more understanding, just to ask, think and include, you know, it's just that. I think that's all it is just to ask people about this. You know, as a person with disabilities to find out what you can work to help them.

Keiligh - I think as well what you said earlier as well about you know, you spent a lot of a long time building a life and becoming confident and to have all that kind of snatched away in you know, what, a year, a year and a half, just on the mask thing because obviously in England, they're getting rid of masks. In a way, would you be quite glad for masks to come to an end so that you could be able to lip read again or would the health concerns and anxiety affect that too much.

Natalie - I don't think that would, at the end of the day life has got to go on like we need to go back to normal. For me that would mean, no masks and I've had my two vaccines, I don't feel really, you know, anxious about the virus, I just feel like, can't let fear take over, you know, we need to living life. And for me to be able to do that, I need a bit of normality, which is obviously no masks.

Saihan – I think everybody has a role to play, not just businesses, but in particular, businesses can make more adaptations. Venues, like cafes, and restaurants and schools, all types of disabilities. Yeah, well, I want to repeat what Natalie said, about to ask the disabled person themselves on what they want and their families and to include them as much as possible. And yeah, so just ask, really, and these are things that are really easy. We have given our past experiences, and we hope that we have reflected on what disabled people across the country and around the world have sort of felt on to show that, you know, we can do it, but we just need extra help and support, especially now with the virus. Disabled people don't really get much of a stand or a viewpoint to share. Personally, I haven't got much opportunities but I believe that, with opportunities that I do have, I want to promote and help as much people as possible, disabled or not. And I thank Sense as well and everybody that has played a part in my life. And thanks, everyone for coming.

Keiligh - I think that's a really positive note to end on. Thank you for listening to the BBC Ouch podcast and thank you to our guests, Natalie and Saihan you can contact the Ouch podcast by emailing Ouch@BBC.co.uk and you can find us on Twitter and Facebook by searching for BBC Ouch. You could also subscribe to the Ouch podcast on BBC sounds. Where you will also find out other podcast 1800 seconds on autism. Thanks for listening.

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