大象传媒

Fx Birds/Scooter

Louise听 0:04听

Okay, here we go.. 鈥�.I'm just zipping along on Brian, not sure if you can hear the sound

Stranger 0:10

out the way sorry. All right, don't worry. Look where you are going鈥�

Louise听 听0:13

All right, don't worry. No problem鈥�Just on a countryside walk, that was some people we we鈥檙e going past. I'm just doing a testing recording outside Jakey. This is absolutely perfect just going through a puddle, can you hear that? I'm going to crash through this puddle, and that was one muddy puddle. Now we鈥檙e going past some people who are feeding ducks.

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MUSIC

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Louise 0:40

Do want to see Jakey? Barley isn鈥檛 it鈥�.I鈥檒l just get some out of my bag鈥�

Right here you go.

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Mark is laughing at me.

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Mark 0:52

You look slightly like you put one of those police cameras on, maybe people won't attack you or something, oh she鈥檚 filming

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Fx

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Catherine (producer) 1:03

鈥榃alks like A Duck鈥� Episode 2: Equipment, Equipment, Equipment.

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MUSIC 鈥� live outdoors

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Louise 1:11

I don鈥檛 know whether we can squeeze in 鈥� maybe that way Mark?

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Right, we've come out into town to the fire garden - it's like a mini mini festival.

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Mark 听1:29

And it gets really frustrating when people just stand in front of you or kind of push in front of you.

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Louise 听1:36

Yeah, so Mark is pushing me in the wheelchair, and there's been quite a lot of sighing. People's awareness around them just absolutely zero at times, but that I can kind of deal with if you're just not paying attention, and then they'll say, 鈥極h, I'm really sorry.鈥� But when people deliberately walk out in front of you and just sort of selfishly stride along, or indeed when I'm sitting down trying to look at something, people just stand right in front of me, just literally stand in front of me, as if I'm not there, I feel visible.

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Mark 2:08

It's kind of funny though, because you think the wheelchair would hurt people more than they would hurt the wheelchair, so if they had any sense they would get out the way, they're very trusting of my wheelchair skills.

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Louise 2:19

Yeah, and let鈥檚 just say there have been a few ankles rammed over the years. (laughs)

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Mark 2:24

Accidentally clipped, Yeah.

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Louise 听2:27

Yeah right, is that right Jacob, it's accidental? (laughs)

This is the thing when you're in a wheelchair, you're actually Um, well, you're up fart level. Frankly, if you're sitting behind someone who accidentally or, not so accidently let's rip, then it鈥檚 right in your face. (laughs) And, you're also at car exhaust level, which is just no fun at all. You get used to it, but sometimes it's quite a powerless feeling.

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Jacob 3:03

I know鈥�

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Louise 3:05

Yes. Thank you, thank you..

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Mark 3:09

Excuse me. Thank you (Louise)

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Louise 3:10

Right, now I'm at the front. There is a very cool fires display, of lots of plant pots on a big metal arm and all lined up and moving up and down and they're all on fire. This is fire everywhere in the market square 鈥� it is really beautiful.

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Louise 鈥� Weh hey! How cool Is that, there鈥檚 water. It鈥檚 amazing though cos they keep lit.

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Fx - More fire

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Louise 3:44

Really Cool鈥�.Such a good idea of daddy鈥檚 to come鈥�.The other thing that I'm loving right now is that Jacob has worn his James Bond outfit to come out to this fire garden Festival. He's literally got like a black suit on a white shirt, and he's got dark glasses, dressed as a spy. This one's fun. Thank you. Take my hand鈥�.Good dancing Jakey. Woo Hoo! Jacob is doing a fire dance. It is awesome. Woo hooo鈥�

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Jacob 4:40

Wherever you are 鈥� woooooo

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Fx applause

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FX 听Rain 鈥� leaving house 鈥� Getting in car - Car Radio

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Louise 5:08

I'm just on my way to the swimming pool. I felt really resentful of swimming at times because just the faff factor, having to do it, because it's the only exercise I can do. They do actually have a hoist which I haven't yet used because they've got quite good handrails on their steps but the handrails are getting harder, so I guess at some point I might have to ask them to get the hoist out for me. So, we'll see how that goes at some point in the future, when I need it.

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Fx Car Arrives

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Louise 5:45

Okay, time to go.

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Just gonna get my walker out the back, hood up cos it鈥檚 raining. The thing I hate most about swimming, is getting changed, getting my walker out, going in, getting all the layers off. And then doing the same thing in reverse at the end. Ok., swimming bag on my walker, shut the car door.

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Thank goodness for disabled spaces, makes it possible for me to park close by鈥�.

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FX Entering the building

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Louise 6:44

I just have to get the lady here to open up a special gate for me. Thank you. No, that鈥檚 all right. Don't worry. Thanks鈥�..Lovely Day! Oh gosh, it's awful.

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I usually wear my swimming costume under my clothes, but I haven鈥檛, so extra stuff to put on, which is always hard work. It does take me quite a while 鈥� I would love to know how it differs from your average fit and well person 鈥� I have no concept any more of how it feels to be an average fit and well person. Winter clothes definitely frustrating, getting things on and off, my socks 鈥� I have to lift my leg up on to me knee (sighs) oh dear鈥�

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Fx Pool

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FX Rain/Car

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Louise 8:08

I've just got out of the swimming pool where I was observing one of the elderly women that is often there at the same time as me, getting dressed again after her swim, and she walks with the stick and it's obviously a struggle, but the thing that struck me is that she was wearing and always wears skirts and tights. And obviously I appreciate this just totally a generational thing, and obviously, it's not a criticism of what she wears or what she chooses to wear, or the fact that maybe that's what she's always worn, and so therefore, she continues to wear, but oh my word, it was actually painful for me to watch the struggle of her trying to get these blinking tights on! And I watch this every time and I think, Oh my goodness. And the fact that it is actually a physical thing, clothes and clothing and what you need to wear to fit with your body and your needs. Oh there鈥檚 a workman in the road, just avoid him鈥�

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And I was thinking back for some reason, to one of the places that I used to work many moons ago, I worked at a university in student welfare and counselling, I used to wear a lot of jewellery and like big beads and colourful clothes and you know, I felt like I was quite funky in a way. And now I just find it actually really really difficult to wear those kind of clothes because of getting them on and off, but now I need to just find a way to wear clothes that are an expression of me, but are also just so easy to get on and off and not feel cold in, and feel comfortable in and the shoes to walk in, and it's quite a challenge and anyway I just hated seeing that elderly lady struggle with her tights and I just thought, oh bloomin ekk! Get rid of the tights and get yourself some trousers lady. Anyway, poor thing. It's hard, and it's hard to watch others struggle. And it really makes me realise how others feel often when they watch me struggle. And I know that myself because my mum had a disability and I watched her struggle for many years and it's not easy. I know it's not easy to be on the other side of it as well and really, really, do you know that. Anyway, (sighs)鈥�.

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Louise 10:30

I鈥檓 in bed, I鈥檝e just had a really, really awful afternoon. I had an appointment and as soon as it got back in the door, which is just not long before seeing a client, I just had terrible tummy pain and without going into details, erm, I鈥檝e not been well and I just feel dreadful. I don't know what this is, but I鈥檝e had to, unfortunately cancel my client at last minute, which I very, very rarely do but and they were lovely about it, which is great. Oh, it's so hard for me when I get anything on top of my usual disability. I find it really difficult to cope with, even just getting in and out of bed to go to the toilet, and the sort of physicality of a stomach bug, is immense and horrible.

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There have been times in the past when I've had a bug and Mark鈥檚 found me lying on the bathroom floor, because I just could not keep going backwards and forwards and he's like, 鈥極h, you can't lay there鈥�, and has to help me. Thankfully, it hasn't happened, this time yet. I'm just really hoping it'll settle but, I sort of want to cry but I'm almost too tired or to cry. I just feel really ugh, just terrible. (sighs) Anyway, a friend of mine posted this on Instagram yesterday and I actually reposted it. It's a quote from one of my favourite writers, a guy called Henry Newman, and he's written this: 鈥楴obody escapes being wounded. We are all wounded people, whether physically, emotionally, mentally, or spiritually. The main question is not, how can we hide our wounds? So we don't have to be embarrassed. But, how can we put our woundedness in the service of others, when our wounds cease to be a source of shame, and become a source of healing, we have become wounded healers.鈥�

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I just completely love that. Because I feel that in a way, and I don't mean this in an arrogant way; and I really hope it doesn't come across like that, but, that I am a wounded healer. And I hope that even to some degree, the client who I had to cancel, would understand that I am also wounded, and I'm not some kind of armchair expert. I'm just another human being. And, and yet, I can, even in all the brokenness that I've known, bring a touch of that healing as well into the lives of others, just as they do to me, and as I lie here completely floored, you know it can feel as though I have no value, no worth; and yet I know that's not the truth. I have to really remind myself of that in moments like this, and I know that this will pass. I know it will pass and that I will be laughing again soon. But I am just not finding much to laugh about in this moment鈥� (sighs)

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Fx 鈥� Washing machine/ Radio in background

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Louise 听14:05

For some reason the stairlift is not working, we鈥檝e turned it off we鈥檝e turned it on. Grandad is trapped downstairs because he can't get past it. I am currently trapped upstairs. Jacob can squeeze underneath it.

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Jacob 14:19

I'm the only one who can move baby, move baby!

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Louise 14:21

Right, well let's wait 鈥榯il Daddy gets back from the dentist and see if well see if Daddy's got any ideas.

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Anyway, Jacobs now brought Granddad's toothbrush down. What a laugh. This is the sort of dramas that we have the, actually that stairlift is my legs to get up and down. Oh, look it鈥檚 beeping now. Good one it might be resetting. Have you turned it back on?

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Jacob14:49

听I turned it on鈥�I have been whacking it a bit

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Louise 14:52

You are whacking it what you mean to try and get it to work? I don鈥檛 think it鈥檚 your fault? I think it's my fault, because I didn't actually go all the way to the top, Then I hopped off it, although, what made you turn it around?

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Jacob 15:02

I was trying to prank you

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Louise 15:04

You were trying to prank me, well I think it worked鈥�..what????

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Jacob 15:07

I was trying to prank you by putting it down. I was like, oh I can prank daddy and mummy by putting it all the way up and I was like, oh, Grandad was coming out, so I was trying to let him, I was trying to let him passed鈥�that is how it started鈥�

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Louise 15:23

Oh dear鈥�the cheek鈥�

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Music 鈥� FX of the stairlift beeping

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Louise 15:43

Daddy's just go home.

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Mark 15:48

Just behind that book case there鈥檚 a couple of plugs. Yeah, down low, could you just Switch both plugs off.

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Louise 听16:02

Mark is now manually sort of what is it? What are you actually doing? Winding the stairlift up manually, basically to the top.

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Louise 16:17

Hope that helps鈥�

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Mark 16:19

It might do.

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FX - Beeping

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Louise 16:27

I'm very lucky that I'm married such a practical man, comes up with all sorts of solutions to all sorts of things.

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Mark 听16:35

But possibly not on this one.

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Louise 听16:37

Not on this one. But you do find ways to get on the beach, to I mean, all sorts of insane things. I mean, when we went around Africa in a wheelchair, that was bonkers, going along dirt roads, bumping over paths. And some of the people of Tanzania, just thought you were amazing for staying married to me because I'm so useless as a disabled wife.

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Mark 17:02

I do sometimes wonder if it's unhealthy though, that I try and, try and fix things. Maybe It's a bit of denial. It鈥檚 a way of kind of denying that life gets limited and life gets harder.

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Fx 鈥� small beep

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Louise 17:22

I suppose we are pretty lucky that for three and a half years, we haven't really had any issues with it.

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Mark 17:27

It's our own fault for not getting it serviced. Although it is a good example of like the costs of disability and just another thing that yeah, it's just expensive, like insur-ing the scooter, repairing the scooter, servicing the stair lift, replacing the wheelchair. It does all adds up.

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Grandad 17:48

That is what Disability allowance is supposed to be for鈥�

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Louise 17:50

Well yeah the disability allowance pays for the housekeeper and the car, but..

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It is not just the money of getting the service done but It's just like another thing on the list of boring disability related tasks. I mean, who wants to spend our time, money and energy on a stairlift service, obviously us because now were stuck at the top of the stairs! (laughs)

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Mark 18:14

I might see it as a bonus

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Louise 听18:16

(laughs) that鈥檚 fine with me. I can be served. Bring me up food. I'll just relax up here.

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MUSIC

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PHONE CALL STARTS

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Louise 听18:37

Hello, yes鈥�.I鈥檝e got a stairlift and it's just sort of stopped working, it鈥檚 the first time, but we've got your number on our stairlift鈥�.听 Right, I need your help Jakey. Can you go and see what number it turns to when we try to move it, is there a number.

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Jacob 18:58

Zero

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Louise 听19:00

Zero. Ohh look it worked! Thank you, bye. (hee hee)鈥�.Tell grandad we did it. Brilliant.

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Music Ends

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FX 鈥� Door slamming, Driving, Radio, Parking and getting out of car.

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Louise 20:09

Someone is in there I think 鈥� it is taken鈥�

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Unidentified Lady: There is another one on the left side鈥�

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Louise 20:32

Okay, so I'm just at the hospital here for my pain clinic appointment. The irony does not escape me. I had a heck of a problem parking, literally. I'm not actually exaggerating. It took me half an hour of going around in circles to find a disabled spot 鈥� and I didn't even get one, I had to talk to the car park guy and he said that I could park on the grass, which is not a space. Oh my gosh, I鈥檓 now currently trying to find a free available disabled toilet.

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Woo, I鈥檓 absolutely exhausted. Like I was actually already in a lot of pain this morning, which is helpful to be fair, when coming to the pain clinic, it鈥檚 very helpful when I'm at my worst. But man, I'm walking along with a walker, because I had so long to wait that I'm desperate. I'm actually a bit late for my appointment, although I've checked in, And it's such a struggle. My pain today feels like it's mostly in my neck. Walking with this walker doesn't help鈥�. sorry鈥�.Thank you. I'm just gonna give up. I'm just gonna have to need the loo, because it's just too hard. And I don't want to miss this appointment because they're every nine months or something and not frequent. I really need them, erm and my pain today feels like black magnets pulling against each other and my neck or like a rope kind of tightening. Oh, I've just been called gotta go鈥�..Hi鈥�.

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Louise 22:14

Oh my word that was so hard. This is me just after that pain appointment. I mean, that was the raw stuff that I just recorded before it, thankfully, the pain consultant was brilliant, and he really like sort of released me of my fears around painkiller addiction, and really released my guilt I think, over sort of needing pain relief, which I know sounds crazy, but it's really really hard, when you do need it and you worry and you read all these articles and you think, Oh no, I'm becoming a statistic of painkiller use and ahhhhh, but you know, it's all about managing. Oh gracious鈥�all these appointments, like I have tried to use a sort of visual example of my pain earlier. But the other thing that I can do, I think, to try to explain to someone who's able-bodied, how it feels in my body, and this is not how it is for every person with a disability, but for me, it's like 24/7, I'm wearing a big heavy backpack, filled with bricks, weighing it down, really heavy puling on your neck, and I'm walking through sand uphill and mostly against a strong wind. I'm trying to help someone to visualise the weakness, the exhaustion, the constant fight, the fatigue that they would feel if that was what they were battling against every day. And that is what I'm battling against every day. That level of extra strain is immense. And I often even forget how bad it is to be living with that pain, to be living with that fatigue and weakness. I mean, (sighs) there are people that are worse off than me on that front.

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And yet, you know, what I feel so angry about in our society is the complete lack of regard and kindness around those that are struggling, whether it's with mental health, or physical health. It really is the measure of our society that we do not put the most vulnerable first, because as far as I'm concerned, that should be our starting place. And I don't mean this to get political because on one hand, it's totally political, on the other hand, it's not, it's just where we should be starting, with the most vulnerable, and then working our way up.

There's nothing wrong with a really strong economy, as long as the people that we start with are the most vulnerable. And, argh, come on, you know. Agh, It makes me angry. And today I just feel, Argh. And also, it鈥檚 come back to that word bored again. I really hope I'm not boring the people that are listening to this documentary because this is again, coming back to the point. I wouldn't want to listen to a documentary about disability. And yet, that's what I'm making. And I don't think of myself as someone with a disability. And yet, that's what I am. And I don't want to think constantly about disability, and yet it's in my mind all the time. And I find, the sort of ranting and raving about disability rights, kind of judge-y and boring, and yet, I'm outraged, you know, myself, because there's a point to be made. And we need to open up this conversation, and we need to put the most vulnerable first. And I really hope this somehow, just somehow, even in the tiniest way, by using my voice somehow, I'm reaching out and inviting in, to this conversation, because we need it. We really need it.

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Fx Car

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MUSIC 听

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Catherine (Producer) 26:39

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鈥榃alks Like A Duck鈥� was recorded by Louise Halling, Mark and Jacob.

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The producers were Jo Rowntree and Catherine Carr.

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It was a Loftus Media Production for 大象传媒 Radio 4.

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All the music and the singing was also by Louise.