Family of six share a one-bed flat while new house is made accessible

EMMA- Nikki is out at the accessibility queue of disabled people lining up to see the late Queen Elizabeth lying in state. Is it working?

NIKKI- It seems to be going okay actually, Em. Really most people have paced it actually. We’re at the end of the queue now. Because people have got these timed wristbands, you see, that they collect from Tate Britain, so they know what time to get here, so that negates all that kind of standing around getting freezing and all of that. 

EMMA- So, non-disabled people are queueing a 3-mile long queue, whereas disabled people get a time slot at Tate Britain, they come along to Victoria Tower Gardens and they slide into the queue near the end. 

NIKKI- Yes. But it is definitely worth highlighting that according to one lady that I spoke to there is a queue at Tate Britain to actually get the ticket. That was where she had to wait two hours to pick up the ticket. So, there’s no queue on the accessible route at the moment, but she did queue there, and that was outside and that was quite uncomfortable and cold for her. So, for anyone who wants to come down I would bear that in mind, depending on how busy it is. 

EMMA- Bring a warm coat and a flask either way. 

NIKKI- Oh, 100%, and some chocolate coated nuts. Em, I’ll give you a flavour, here are some of the people we’ve spoken to not long ago. 

Ellie, how have you found getting to this point now? Because you’re quite close to being able to go in and see the Queen, aren’t you?

PUBLIC 1- I’ve found it very, very good. They’ve got a very good system. And they’ve got disabled ramps; they’ve got food facilities at Tate Britain; they’ve also got toilet facilities there. And then when you’ve waited in the queue and you’ve got your wristband then you just come down here and into the queue. I’ve come on my own and I’ve made a lot of friends ever since I’ve been here. 

NIKKI- I just wondered, guys, how you found this whole accessible experience getting to see the Queen. 

PUBLIC 2- Very easy. It was only last night we found that it was accessible. Things have changed so this has made a big difference. 

NIKKI- Was it a long wait?

PUBLIC 2- About an hour and a half by the time we got to Tate Britain to get to our wristbands. 

PUBLIC 1- About an hour and a half. But the queue is a lot longer now. 

PUBLIC 2- It’s a lot longer now. 

NIKKI- What was that atmosphere like? Have you met any people along the way?

PUBLIC 3- Very good. Nobody is complaining, except queue jumping. If somebody tried to queue jump then there was a bit of a kerfuffle. Then the daggers were out. 

NIKKI- Oh Rosalind, you look a cracker. 

PUBLIC 4- I know. I am a cracker. 

NIKKI- Has it been okay for you, access wise has it been all right?

PUBLIC 4- Yeah. This is my son, he’s my carer. 

PUBLIC 5- It’s been pretty well organised and that. There could be a more few seats maybe. You got married on the Coronation day, didn’t you?

PUBLIC 4- Yes, I got married. 

PUBLIC 5- So, it’s an association with the Queen that sort of goes back a long time. 

PUBLIC 4- She got married on the second and we got married on the sixth. She had a horrible day; we had a lovely day. 

PUBLIC 5- In terms of weather you’re talking about. 

PUBLIC 4- I mean weather, yes. 

NIKKI- I was going to say! Why was it important for you to come here? 

PUBLIC 6- I just wanted to come along. 

NIKKI- Just be part of it. 

PUBLIC 6- It just makes me cry.

NIKKI- Oh, don’t cry.

PUBLIC 6- I know, just thinking of it. She was our Queen for so long. I was seven when she was crowned. You just want to be able to say you’ve done it, to be quite honest. 

NIKKI- And do you think you could have done it if they hadn’t had this, the accessibility? 

PUBLIC 6- No. I needed the accessible definitely. I couldn’t have walked. 

NIKKI- Now, the rest of this episode was recorded just before the announcement of the Queen’s death. 

MUSIC- Theme. 

NIKKI- It’s Access All, the BBC’s disability and mental health podcast. I’m Nikki Fox in London.

EMMA- And I’m Emma Tracey in Edinburgh. 

NIKKI- No matter where you are in the world we’ve hopefully got some stories you’ll all want to hear, like this:

MILLIE- Why would a blind person take up a martial art? To be honest I took it up as a bit of a joke. 

NIKKI- That’s Paralympian Millie Knight, she’ll be with us later. But first, this week’s big story, ‘I just decided to try and write this email as a cry for help, as a last option’. Now, that’s the first line of an email we received from Susky, telling us about her housing situation. Susky is married with three children. Her eldest is seven year old Joel, who has quadriplegic cerebral palsy and uses a wheelchair. The family of five are currently living with Susky’s mum in her one-bedroomed flat, because the three-bedroomed council house they were given earlier this year doesn’t have the adaptations Joel needs. Yet they are still paying rent and council tax on it. Now, Susky joins us on Zoom from her mum’s very busy home I imagine. Hello Susky. 

SUSKY- Hello. 

NIKKI- Hi, how are you? 

SUSKY- I’m fine thank you. Yourself? 

NIKKI- I’m doing all right. I’m really looking forward to speaking to you. Thank you so much. All of us here when we read your email were so moved by it, we really were. So, thank you for getting in contact first of all. Tell me about your son, Joel. 

SUSKY- The doctor’s saying that Joel is never going to walk, speak, eat or running, nothing at all. He has cerebral palsy. He enjoys himself and makes everyone comfortable around him as well. He’s a lovely boy. 

NIKKI- So, what would you and Joel need in a house, Susky, for it to work for you and Joel and the rest of your family? 

SUSKY- Our dream house was like one level. He needs to change position quite a lot, so we need to put him in a bed, in a chair so one level will be…

NIKKI- Much easier, yeah. 

SUSKY- We need a through-floor lift for the second floor. In the house we receive now from the council we need access, so ramp access as well, and hoists. 

NIKKI- How long have you been waiting for now, Susky?

SUSKY- We received the house at the end of March. So, April, May, June…

NIKKI- A long time. It must feel like an awfully long time. 

SUSKY- I think around five months already. 

NIKKI- So, you’re having to live at your mum’s. just tell us about that. What is that like? Because I imagine it’s a tad chaotic?

SUSKY- Yes. My mum sleeps on the sofa at the moment. We needed to swap the living room to the bedroom because the living room was bigger. And we have the blanket bed in the bedroom, a double bed, a hoist. I tried to share the equipment we use at home. We have his wheelchair and a profile bed as well. 

EMMA- All in that bedroom? 

SUSKY- Yes. We tried to put everything in the bedroom so we don’t take too much space from my mum as well. She has her crutches as well. and sometimes she needs to use when she is in pain, because she had hip pain, hip and goes to the knee, so it’s a bit difficult for her as well. 

NIKKI- You’ve not got the right set-up at all. 

SUSKY- No. 

NIKKI- Emotionally what impact is that having on you and on Joel as well?

SUSKY- Me and my husband – I try not to speak much about me to be honest, I’m not used to that, I don’t think. I just do it. 

NIKKI- You’re like my mum. 

SUSKY- We are really stressed, really stressed. It’s difficult, really difficult. I just get worried about the kids as well because when we get too stressed we sometimes pass to them as well, so that is my main concern. We know the children are okay, so this is our priority, so they are happy kids. But it’s not the greatest situation. And it has been prolonging for such a long time; that I think is the main problem as well. 

NIKKI- There are six of you in this one-bed at the moment while you’re waiting for this property to be done. How much more difficult is your life? Like what are your daily routines? 

SUSKY- So, I need to take Joel out carefully, because I don’t want him to bump into the beds, because there is limited space here. And he tends to extend his arms, so we need to make sure that he doesn’t get stuck. That’s the other thing with the space as well: we need to make sure that Joel when he goes through the door, my mum’s door all needs painting because the wheelchair just bumps in the door and we can’t do anything about it. 

NIKKI- Yeah. Does your husband work and do you full time look after Joel?

SUSKY- Yes, he works. And I stay here in the house with the kids. I have a carer that comes every day, two hours a day. 

NIKKI- So, you get two hours a day?

SUSKY- Yes, which is when I need to take the kids to school I will ask her to stay here, because otherwise every morning I need to do a more than 30-minute journey to go to the new one. 

EMMA- That’s because you’ve moved your children to the school where the new house is? 

SUSKY- Yes.

EMMA- And Joel’s not at school because he has had major hip surgery, isn’t that right?

SUSKY- Yes. They said that it was good that we did that because it was totally dislocated both sides. He had all these years with pain. It did make a difference the surgery to be honest because now we can see that he’s more calm. It’s really sad that we waited for four years to get this surgery done because of the house.

NIKKI- It’s a real shocking story this, isn’t it? But we know you’re not alone when it comes to all the challenges you're facing. That’s right, isn’t it, Emma?

EMMA- Yeah absolutely, Susky is not alone. She’s having her adaptations paid for directly by the council, but a lot of people get their adaptations funded through something called a Disabled Facilities Grant. Now, the law says that adaptations should happen within 12 months. In 2020 when Leonard Cheshire disability charity looked at the issue 67% of councils told them that adaptations weren’t happening within that 12-month period. And 23% of councils told them that it wasn’t happening within two years. Leonard Cheshire also found out in that research that requests for adaptations via the Disabled Facilities Grant in the four years up to 2019 went up by 27%. That’s a lot more people needing money for adaptations for their homes, isn’t it, Nikki?

NIKKI- Yeah. In 2018 the Equality and Human Rights Commission found that disabled people can experience serious deterioration in their mental wellbeing due to living in unsuitable accommodation. I mean, I feel that that’s the most obvious statement that I’ve read. 

EMMA- I know. And do you know what, Habinteg housing charity said that people whose accessibility needs are met at home who are of working age are four times more likely to be in work than disabled people whose needs aren’t being met. I know Joel is not in work, he’s a little boy, but that shows the impact that unsuitable housing has on people like Joel. 

NIKKI- We mentioned Habinteg, and with us now we’ve got Christina McGill, their director of social impact and external affairs. In a sentence what is Habinteg? What do you guys do?

CHRISTINA- Habinteg is a housing association, and we’ve been around for just over 50 years. And we’ve always specialised in providing homes which are wheelchair accessible, alongside homes which are generally accessible and adaptable. So, our idea is – which was innovative when we first formed – was that disabled people should be able to live anywhere they want alongside non-disabled people in the community. 

NIKKI- Wouldn’t that be nice, Christina, hey? What a world. So, Christina, the government recently announced a slight strengthening of the current building regulations, which will see all new homes having to be accessible and adaptable. Is that enough in your opinion? 

CHRISTINA- It hasn’t quite been switched on yet, but at some point in the future all new homes that are built will have to be slightly more accessible and adaptable than they used to be. So, that’s a good thing. It won’t solve everybody’s issues though, so we still need to make sure that councils around the country are making good plans in their local area to develop a sufficient number of homes which are to that slightly higher spec, that are fully wheelchair accessible, to meet the needs of their local population. That’s really, really important. There are some areas of the country where there are no plans for wheelchair accessible homes at this current time, so we need to fix that. 

NIKKI- Another organisation, Christina, Foundation, they tell us the majority of adaptation requests are for ramps, lifts or a shower. But do you know what’s behind the long waits for these kinds of adaptations? 

CHRISTINA- The Disability Facilities Grant process has got a lot of stages to it, so there’s a lot of different roles in a local authority that’s involved in that. So, you’ve got your occupational therapy stage; you’ve got your design stage; they have to commission the work; they do a means test. The economic situation is putting different pressures on building that might also be causing some delays at the current time I imagine. 

NIKKI- Yes. And just quickly before we go, solutions, Christina, have you got any advice for Susky? I mean, should you be able to stay in your original property until adaptations are made to the new one? 

CHRISTINA- The most important thing is to keep the pressure up on the work; because obviously they’re given permission for the work, they’ve got an intention to do it, they know what the need is. And I guess it’s about having that really live relationship with the people who are making the decisions and who might be able to judge things forward. Maybe local councillor, local MP might be a good way to get a few extra people in your corner to help people move forward more quickly.

EMMA- I know Susky has been on to her MP lots of times. And Susky has needed planning permission for the ramps, and that’s one of the many things that has taken time, isn’t it, Susky?

SUSKY- Yes.

NIKKI- And Susky also wrote to the Queen, do you know what I mean.

CHRISTINA- Did you get a reply?

SUSKY- I did. She said they can’t meddle in this kind of affair, so she asked me to contact the State Minister of housing. 

NIKKI- She can’t meddle, but she gave some advice. I’ve got a statement here from Croydon Council which I’ll read out. It says, ‘We work closely with this family, their doctors and our children’s social care and housing teams to find them the right home. Carefully discussing and agreeing extra adaptations which would be needed after moving in, and which would take some months to complete. We continue to work with them so they can make full use of their new home, and are committed to progressing necessary works’. But they say here about the works after they move in.

EMMA- Joel had surgery very soon after the new home came about. 

NIKKI- For hips.

EMMA- And they wouldn’t let him go into that house after the surgery because he would be bumped around too much getting into the house and getting around it. 

SUSKY- Before we came to the property we told them that Joel needs that surgery soon. So, I think it’s unfair because they said to move and they will do the work, and then we moved but they didn’t do anything at all. 

NIKKI- Yeah, I feel like we need everyone here involved to fight it out. Thank you so much, Susky, and thank you Christina. And Susky, keep in contact with us and let us know how it goes. And it was thanks to Susky emailing accessall@bbc.co.uk that we were able to look into her story and get her on the show, which was brilliant. So, if you’ve got something you want us to look into, something you want to tell us, then just get in touch. You can email us or you can WhatsApp us. I’ve actually got the number here this time. It’s 0330 123 9480.

EMMA- The story is just so shocking. The living situation is I think something you read about sometimes, but when you get an email into your inbox with the information about a boy who needs space to do his therapies, to get in and out of bed, to move around, to have his personal care needs tended to, and he doesn’t have that space and everyone’s trying and it’s not happening the way it should, it’s just so, so, so frustrating and disappointing and sad. 

NIKKI- Yeah. 

MUSIC- Access All.

EMMA- Can I ask you, Nikki, to read out Martin’s email because I can’t read?

NIKKI- Oh yeah, of course. You playing the old blind card?

EMMA- Yes, yes I am. 

NIKKI- Fair dos. 

EMMA- Yes I am playing the blind card. I will play all the cards. 

NIKKI- All the cards. In contrast to my and my sister’s experience at the gig at the weekend Martin got in contact about the horrible experience he had at the theatre. So, Martin is a powered wheelchair user, and the ramp at the access entrance was so steep that he fell backwards and bumped his head. That’s awful. 

EMMA- I know. 

NIKKI- That is awful. Now, when he recovered and went in things didn’t get much better. Oh, this is awful, Martin. He says, ‘We were guided to our seats along the back of the auditorium, which is at an angle. My wheelchair was trying to steer down while I was steering up’. Does he mean because he was at the angle it was like shooting down, Emma?

EMMA- Yeah, I think like a supermarket trolley sometimes does, it kind of goes off, tries to take a life of its own because the angle means the wheels really want to go one way but you want to go the other way. I think I naively think, oh there’s a ramp, that’s grand. Or I did think that before I knew a lot of wheelchair users. But I did want to ask, is there a slope scale where you look at a slope and say, I can do that, or a ramp? Is there a camber thing? Do you know what I mean? What goes through your mind when you see?

NIKKI- I tell you what goes through the mind, Emma, it’s all about the gradient, about the gradient. 

EMMA- Gradient, that’s the word. 

NIKKI- Yeah. It’s about how steep the thing is, isn’t it?

EMMA- Yeah.

NIKKI- The gradient. And yeah, you can. I mean, I tried out various ramps. I went to a skatepark and my PA at the time, Sophie King, took a video of me going up all these various ramps at the skatepark. And I didn’t make one of them. They were all too steep. But we did set it to [singing] at least in heaven I can skate, because right now I can do jack. Anyway that was me, I couldn’t do jack because they were too steep, so there is a problem. 

EMMA- If you’re not feeling great and you’re in a big powered wheelchair, like Martin said he was, you probably need less gradient. Do you know what I mean? Some people can do back flips in their wheelchair, but everyone is probably different. 

NIKKI- Yeah totally. My scooter is not too bad at ramps, but my electric wheelchair is probably better in some ways, because I’ve got one that’s got hydraulics and all fancy-pants stuff. So, yeah that would probably have handled a ramp better. But it depends; I mean, I couldn’t imagine pushing myself because I’m as weak in my arms as I am in my legs. Gosh, can you imagine pushing up a really steep ramp? Phew.

EMMA- Well, I just can’t. I don’t even like walking up a hill, never mind…

NIKKI- I don’t like walking. 

EMMA- I like walking. Now, seamless link, Nikki…

NIKKI- Oh right, here we go. 

EMMA- Would your PA, personal assistant, would they help you up the slope maybe or up a ramp do you think? 

NIKKI- [Laughs]

EMMA- You just laughed at me now. 

NIKKI- I do. 

EMMA- You just laughed at me now. Because actually after last week’s really important story about the shortage of personal assistants listeners did get in touch and Ross sent us a voice message: 

ROSS- Without a carer I would be unable to do anything. This includes all the obvious basic things like washing, sleeping, dressing and eating. But more importantly it would prevent me from being able to continue working. The knock-on effect of this would be if I don’t continue to have care I would find myself unable to do my own job, which would place my mortgage in jeopardy, and then therefore potentially lead me to having to sell my home and end up living in some form of residential care, which fundamentally isn’t something that I would ever want to experience. So, the care crisis is huge. What needs to be done about it is that they need to recognise that this job is an important job, the funding streams that support this need to increase the wages, the training and development and realise it’s a career, not just an occupation for some people. That would help retain and attract good quality people. At the moment I’ve been advertising for a year and I have not been able to find anybody suitable for the job, which is real shame. And a lot of the money is being spent on wasted advertising. 

EMMA- Ross says he’s spending hundreds on advertising, and his current team are working over 60 hours a week to cover all those missing PAs that he just cannot find. 

NIKKI- I know, and I know Ross – we follow each other on the old socials – and I’ve seen him advertising, and he seems like he’s always advertising, as am I. And Ross is a really cool guy. Not that this should matter, but I  just think why would nobody want to apply for a job with Ross. He’s as cool as a cucumber, he’s got a great job, he goes here, there and everywhere. If you like footie he’s always at the footie. Of course the job as a personal assistant is not all fun times, you’ve got your mundane kind of stuff, but his job has got an awful lot of variety. If Ross is struggling then my goodness, I’m really in trouble. 

So, before we leave this bit of the programme I just want to mention one of our colleagues, Sean Dilley. You know him, don’t you, Ems?

EMMA- I do, I do, a BBC correspondent, yeah. 

NIKKI- Sean is retiring his guide dog, and he has basically recorded that journey for us really for a programme called 5 Minutes On, which is available on BBC Sounds. It’s the last walk he took with his guide dog. 

SEAN- It’s pretty much a straight line now. Sammy’s not going to have to judge another road as a guide dog anymore because we’re not crossing any more roads. Good boy. And I wish this walk could be an eternity to tell you the truth. Good boy. Yay, come on, let’s get you off the lead. Well done! Come here, come here. Thank you so much. Thank you so much. 

NIKKI- Oh. So, there you heard it: Sean’s last walk with Sammy. Now, you can hear more of that on the podcast 5 Minutes On, which is available on BBC Sounds. 

MUSIC- Access All with Nikki Fox.

NIKKI- Well, now we’ve got a little story about a Paralympian who used to fly down those mountainsides, but has now swapped to a different sport, which is keeping her a little bit more grounded. That’s right, isn’t it? We’ve got blind skier Millie Knight with us. Hello Millie. 

MILLIE- Hiya.

NIKKI- Hello darling. Now, you are one of Great Britain’s most decorated Paralympic skiers, but earlier this year you found success in an entirely different sport, that is karate. I’ve always fancied that myself. And you’re now England national champion. 

MILLIE- I know, it seems so crazy. Honestly, it’s like the most bizarre thing. Like, why would a blind person take up a martial art?

NIKKI- Well, why not, I say Millie. I mean, it’s quite a change though, isn’t it?

MILLIE- A massive change. To be honest I took it up as a bit of a joke. 

NIKKI- For bants. 

MILLIE- Yeah exactly. My friends were doing it and I thought, oh you guys, you look ridiculous, you’re just sort of swatting flies about. And they were like, oh come on, give it a try. And I gave it a go and it was incredible. It was so hard. And all of a sudden my sort of laughter at them turned into massive respect. 

EMMA- Were you inspired by Cobra Kai or were your friends inspired? And if so – I need to get this out of the way lads, everyone will understand when they’re listening – if so would you say you're more Miyagi-Do or Cobra Kai?

MILLIE- That’s amazing. I actually got into Cobra Kai after I started karate.

EMMA- Ah, because Cobra Kai is like the new version of the Karate Kid when they’ve all grown up, and there’s a ton of karate in it. And I listened to the audio description and it’s just like, he swiped his legs from under him, he knocked him over. 

MILLIE- And another kick!

EMMA- Yeah, there’s another kick and another kick and another kick and then another kick. Anyway sorry, I digress. 

NIKKI- Well, Millie first of all I’m going to do that thing that’s really annoying that we all get in life: you lost your sight, da, da, da. But you did, you lost your sight as a child, didn’t you? And then you took up skiing around the same time, is that right? 

MILLIE- I got really ill when I was a baby and I got an infection that scarred my right retina. And then when I was six it then went again in my left eye. I lost my sight. I mean, obviously I didn’t really realise, and it certainly didn’t impact me in any way – or that’s what I thought anyway. My mum turned round to the doctor and said, ‘Oh no, we’ve got a ski trip booked, she’ll certainly be coming on it’. Yeah, went skiing and it was the coolest thing ever. 

NIKKI- You sound quite cool as a cucumber about it, which I like. 

MILLIE- It’s awesome. I’d highly recommend it. 

EMMA- I’m blind and I’ve tried skiing and I spent most of the time on my bum. And really the balance thing was a huge, huge issue for me, because you really do need to have good balance to ski. I was looking at an article recently where it said that people should be able to stand on their leg for a minute if they’re under 40. I was testing it out in the garden and I can stand on my leg for about five or ten, or at the very most 15 seconds. I’ve always blamed the fact that I can’t see the horizon to keep me straight and to keep me balanced. I just wonder, skiing and karate are both about balance, where do you get your balance from? 

MILLIE- I will agree with you, it’s very difficult. Skiing wise for some reason it’s much easier. When you’ve got all the G-forces acting upon you then it’s kind of strangely easier. But then what I’ve discovered with karate is that over the last couple of years I’ve been doing it able-bodied, then the last couple of months I’ve been doing it as a competing Para and visually impaired, so I have to wear a blackout blindfold. And all of a sudden the 5% of vision that I completely rely on loads, and I’m like oh my days, this is so hard. So, I completely agree with you, it is very challenging. But it’s all about having the strength and the control within your body, I guess. 

NIKKI- That’s interesting that little 5%, for somebody who’s not blind. 

EMMA- Oh yeah, even my light perception, if I put on a blindfold I’m completely disorientated, definitely. Anything that takes away any bit of my senses makes a huge difference, definitely. 

NIKKI- The thing is about you, Millie Knight, is that the Beijing Winter Paralympics, which were earlier this year, you got a bronze medal for that. And then by July you’d won a national championship for karate. How do you do that? When I was reading about you I’m like, I mean, some people are just born really talented, and it shows itself at a really young age. And I’m like, how inadequate am I. But how do you do that? 

MILLIE- I don’t really know. It certainly wasn’t my intention. It’s not like I kind of had it in the back of my mind when I was competing at Beijing that I was going to go on to compete at the English Nationals and then hopefully subsequently the Commonwealths. I moved to a new club after I came back from Beijing, and they’ve completely taken me on board and been utterly incredible, and they’ve just kind of believed in me. It’s gone from being a bit of a joke and a bit of fun and a hobby to suddenly something very serious and very exciting. 

NIKKI- Have you ever fallen out of love with skiing? Because skiing is the one you’ve done for the longest. 

MILLIE- Yeah, I mean if I’m very honest I have had times, especially after my four concussions, because obviously you don’t get concussion by just waking up in the morning and getting out of bed; it is preceded by a massive crash. And those crashes certainly did change my sort of outlook on skiing I guess. Especially my first one: my first one gave me that sort of sense of mortality I think as a young teenager you don’t really have. You just kind of think, oh this is an amazing sport, I’m going so fast, it’s so cool, there’s no danger involved. And then all of a sudden you have this crash and it’s like oh, wow actually this isn’t a dangerous sport until something goes wrong. 

NIKKI- And you feel like you’re not invincible anymore. 

MILLIE- Yeah, certainly. 

NIKKI- Did it hit you hard when that happened? 

MILLIE- Yeah, that took a lot to come back from. And especially after my most recent one that was last year, that kind of hit psychologically really hard, because it’s like how many more times can I go through this. Especially with a massive sense of déjà-vu because I had a massive concussion exactly a year before the 2018 Winter Paralympics, and then to have a massive concussion exactly a year before the 2022 Paralympics it was like oh no, I’m doing this all over again. 

EMMA- Your mummy must be beside herself about your poor head!

MILLIE- I know. 

NIKKI- Millie, I’ve been reading a lot about you, and I was so interested in the relationship you had with Brett Wild. Now, he was your ski guide, wasn’t he? I think that’s the best way of putting it. He’s a guy that kind of flies down the slopes with you, but slightly in front of you. Is that right? 

MILLIE- Yeah exactly. It’s his responsibility to get me down the hill as fast and safely as possible. He kind of communicates with me all the way down the mountain, tells me exactly what’s going on, all the key and relevant information that I need to know. And I’ll communicate back to him. But it’s certainly a very unique partnership. 

NIKKI- I was devastated to read that you’re no longer together. It broke my heart; it actually broke my heart. 

MILLIE- And mine. Yeah, it’s very sad, very sad. It’s been a fantastic seven years. Yeah, it’s sad that he’s retired. And there will be some certainly massive boots, ski boots to fill. 

EMMA- Is it the sort of Rose and Giovanni level?

MILLIE- Yeah, exactly. It’s that level of trust and understanding each other. Brett could understand me so well to the point that he could work out how confident I was by the sound of my voice, by the way that I walked down to breakfast, by my breathing rate when I’m skiing. It’s those skills that you just can’t teach someone. He’s a submariner in the Royal Navy, and the Royal Navy released him to ski with me full time, which is a fantastic opportunity which we’re both very grateful for. That then enabled him to ski with me full time. And we could then train our absolute socks off. And our partnership and our trust and everything just grew so much. And over the last seven years it’s gone from us not really getting on and me finding him very annoying, to being the most successful partnership. 

NIKKI- Because I know what it’s like when you’ve got somebody that you trust so well, and when they leave it’s not uncommon for me to throw myself on the floor lunging at them, grabbing their leg as they walk out the door, with me wailing like a child. I’m very needy. What was it like? Because he had to go back, didn’t he?

MILLIE- Yes. We’d kind of been speaking about it for the last year or so, so I had the time to come to terms with it. Whether I actually did or not I don’t think I did, or how. We thought that the last race in Beijing would be very emotional and it would be all tears and, oh I’m going to miss you so much. And obviously it was, the end of a Paralympics is always very emotional. But actually it wasn’t as emotional as we thought it was going to be because I was going to be seeing him again very recently at his wedding. So, I was like, oh it’s all right, I’ll see you in two weeks’ time. It wasn’t until I said goodbye to him at his wedding that I was like, oh actually I now don’t know when I’m next going to see you. And we’d spent the last seven years sort of like, see you next camp, see you next week, very regular. And now it’s like oh. 

EMMA- Have you got a new guide yet? 

MILLIE- No, I haven’t. That’s going to be a long process trying to find the right person. It’s a sort of audition process. 

NIKKI- They’re going to be in a lot of trouble because you’re just going to look at them going, you are not Brett, you are not. 

EMMA- I mean, it’s not the same at all right, but I had a guide dog once, Verona. I had her from age 27 for ten years. I’ve tried one other guide dog but it didn’t work out. Every time I think about getting another one I’m like, it’s going to be no Verona, she’s the best dog, I’m never going to get a better guide dog than Verona so what’s the point, you know. 

MILLIE- I mean, to be fair we did actually do an interview once where Brett was introduced as Millie Knight’s guide dog. 

EMMA- Cheeky!

MILLIE- That was very funny. 

EMMA- I mean, I have said forward to my husband more than once. Forward is the command for a guide dog to get them to move. You’re standing somewhere and he’s chatting and I’m like, ‘Forward, come on, forward, get going’. 

NIKKI- I wondered, have there been any kind of mundane challenges in your life that have come from being blind? 

MILLIE- All the time. Yesterday my bus didn’t turn up and I couldn’t get to where I needed to go, which was heart-breaking. Especially when you’re relying on public transport and it’s your only option. That’s really tough. I do find that very frustrating sometimes. It’s kind of like simple things like not being able to read the back of ingredients on cereal bars and random things like that that are frustrating. 

NIKKI- I mean, it’s a bit ridiculous that flying off a mountain top is probably easier to do than working out what cereal you want. 

MILLIE- Yeah. 

EMMA- And you know when you said about the bus not coming being heart-breaking, that sounds really dramatic but actually it’s true. You feel devastated because you think I don’t have the same tools to get there as anyone else and I’m going to miss out, and that’s annoying because I don’t deserve to miss out and I’d quite like to be where I need to go. 

NIKKI- As we go into autumn, Millie, just finally I’d like to get you to choose between your two babies. What are you going to concentrate more on: skiing or karate?

EMMA- Karate [pronounced Karat-ay].

NIKKI- Sorry Cobra Kai.

MILLIE- It is a difficult one. But skiing is always that sport that has taken me to who I am and what I am today, and it’s always going to be and always has been my priority, because it’s given me so much and I’ve put so much into it. Karate is obviously fantastic and I’m really absolutely loving it at the moment, and it’s the heat of our season at the moment. That’s amazing and I really enjoy it,  and I hope to try and keep going with both for as long as possible. 

NIKKI- What’s your long-term goal? Have you got any plans like, I don’t know, for Millie Knight when she’s 35 or 40?

MILLIE- Actually karate has been shortlisted for the 2028 Paralympics in LA, so that’s quite interesting. That’s a little bit of inspiration there. 

NIKKI- Hmm, she’s liking that. 

MILLIE- Yeah. I mean, I’d like to complete my degree at some point as well. That would be really good. 

NIKKI- Honestly Millie, you are brilliant. Thank you so much for joining us today. I’ve really enjoyed that chat. I like you and Emma talking about all the blind chisel. I feel like I’m learning stuff. 

EMMA- Get a few blind people together and we just go on about technology. 

MILLIE- All the queues that we can skip and all the free things we can get. It’s fantastic. 

NIKKI- All right you two, all right, get a room. I can tell you all about mobility scooters you know. 

MILLIE- Oh, I love it. 

NIKKI- Yeah. Thank you so much for being on. You are brilliant. 

EMMA- Thanks. 

NIKKI- So, if you can please keep rating, reviewing and subscribing wherever you’re listening to us today, because that will help us move up the old podcast charts so that more people will get to hear powerful stories about disability and mental health, and me and Emma. Feel free also to press the five star rating button. 

EMMA- If you think we’ve earned it. 

NIKKI- And you can also leave us a nice little note so that more people will get to find out about what we do. So, for now goodbye. We will see you next week. 

EMMA- Bye.