EPISODE SUMMARY
Kathryn Paylor-Bent has a lot of wisdom to share and we cover a lot of ground in this conversation. We talk about her experiences as a disabled woman, wheelchair user, and the CEO of two successful businesses. She uses her disability as inspiration for her successful career as an adaptive fashion designer and as a consultant to other organizations.
She shares her experiences with ableism, including medical and digital ableism like shadow banning on social media and examples from her personal life. In light of some of these negative experiences, she also shares solutions as an advocate and suggests how we can better understand the disability community. Another important part of Kathryn's story is being a mother to Tom, her son with autism and mental health challenges. She shares her vision for Tom's future as well as the future of other young people with disabilities through her business Seated Sewing.
For the visually-minded who prefer to listen and read, watch the transcript video here: https://youtu.be/rpJslXjawTk
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[00:00:00] Kathryn Paylor-Bent: Nothing for us without us. If you are designing something for the disabled community or opening a shop, then don't assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need.
[00:00:24] Carole Blueweiss: Kathryn Paylor-Bent should know. She was once a nurse and non-disabled. Now, she is disabled and a permanent wheelchair user, which doesn't stop her from living a full life. She travels, mothers, paints and sews, and she is the CEO and founder of two successful businesses. One is called Consult Seated. This organization allows Kathryn and other disabled experts to help other businesses with accessibility and inclusivity in both digital and physical spaces. Her other business is called Seated Sewing. There she is the chief seamstress and designer. She sews clothing for people with any disability, anywhere in the world. Kat is married to Nathan and they are both the proud parents of their teenage son, Tom, who was diagnosed with autism at about seven years old.
[00:01:16] Kathryn Paylor-Bent: We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom's issues.
[00:01:32] Carole Blueweiss: It's hard to wrap my head around the idea that somebody would accuse a mother of causing their child's disability. And yet that is exactly what happened to Kathryn. If I hadn't heard it from Kathryn in her own words, I would not believe the story. Stay tuned. I also want to express my appreciation for Kathryn because she expresses so much from her point of view, which is a very unique and important point of view. Unique in the sense that she was once non-disabled and now she's disabled. Two, that she's the mother of Tom who has autism and three, because she's on a mission to speak out against what she considers systemic misunderstanding of people with disabilities and a lack of effort by many, not all, to try to understand and include disabled people in policy and community decision making. Nothing for us without us, that sums it up.
[00:02:28] Kathryn Paylor-Bent: Ableism is its name. And it's where people who are without disability assume they know what is right for us. It's very common in society. It's very common in design and it's not always done out of malice and badness. It's done out of lack of education. It's a sad state of affairs if we can't get it right by just having open and honest conversations with the community.
[00:03:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents and children are the experts and where connection inspires change. My name is Carole Blueweiss. And today I have as my special guests Kathryn, the CEO and founder of Seated Sewing, her son, Tom, and their dog, Shadow.
[00:03:24] Welcome, Kat, to Wisdom Shared.
[00:03:26] Kathryn Paylor-Bent: Thank you very much. It's lovely to be here.
[00:03:30] Carole Blueweiss: Tell us about the name of your company.
[00:03:32] Kathryn Paylor-Bent: My company's called Seated Sewing. I'm all the way over in the UK. Not far from Scotland, north of England, over in Durham. I was on a sewing retreat with a designer in the UK. And I had explained that I'm disabled and a wheelchair user.
[00:03:50] I couldn't find the clothes that I wanted. So I used to make my own, and I said I wanted to turn it into a business. So we spent the weekend throwing ideas around and we wanted it to reference the wheelchair in some way and my passion for sewing. So over the weekend, we came up with Seated Sewing.
[00:04:11] Carole Blueweiss: What happened that puts you in a wheelchair?
[00:04:14] Kathryn Paylor-Bent: 15 years ago, I picked up my son who was only six months at the time, out of a playpen. And I herniated a disc onto my spinal column, which needed emergency surgery, but the surgery actually went wrong and damaged my spinal column instead of fixing it. I spent nine months in hospital with them trying to fix things. I ended up with multiple infections and, unfortunately, it couldn't be repaired. And I ended up as a wheelchair user.
[00:04:47] Carole Blueweiss: Do you have use of your legs at all?
[00:04:50] Kathryn Paylor-Bent: I have got use of my right leg. My left leg, I have no feeling, no sensation, because they don't get the proper signals to them due to the nerve damage that was caused. So, my chair is my legs now.
[00:05:07] Carole Blueweiss: I usually try things on standing up. How does it work for someone in a wheelchair?
[00:05:11] Kathryn Paylor-Bent: It's quite challenging because shops aren't really set up for wheelchair users to try on clothing. Fitting rooms tend not to be large enough. We might be able to get a chair in, but actually being able to turn, being able to have a carer come in and assist you, there tends not to be that space. So, a lot of our shopping is done online and we'll try on at home. I used to go out for shopping days with my friends in the old days, and we'd be trying all sorts on and pulling outfits. That doesn't happen anymore. Shopping is just something, very much like food shopping, it's done online. It's delivered to the house and we deal with it all in house. So it is not great. It's not fun. And there's certainly not clothes out there that are suitable for people that sit all day.
[00:06:05] Carole Blueweiss: How did you learn how to sew?
[00:06:09] Kathryn Paylor-Bent: My grandma, my mother's mom. She was a seamstress and she made dresses for everybody. If there was an event, then Grandma would be making you an outfit for it. And I just vividly remember her house always had the sewing machine on the kitchen table. There was threads everywhere. There was fabrics everywhere. If you had any questions, if you weren't sure, you went to Grandma, 'cause she'd be the one that'd be able to show you how to fix something.
[00:06:38] And my very first sewing machine was a little Singer that actually it wasn't even electric. It had a little handle you had to turn. So my mom could sew as well. And it's always just been in the family. Just something that we grew up with, you could sew and you could knit. And it sort of went from there. And I think the fact that I'm 5'11" and the child of the seventies, we didn't have tall ranges. So I had to make a lot of my clothes because my legs and my arms were too long for traditional shopping. It's not something that was new to me when I became disabled. It had always been in my life. And yeah, just, I just had to think of it in a completely different way. And so that's been fun.
[00:07:31] Carole Blueweiss: Now, do you make all your clothes?
[00:07:35] Kathryn Paylor-Bent: Not all of them. I normally wear maternity pants because they fit really well if you've got a colostomy. They sit lower. So around the house, I'll just be in maternity wear because it allows my bag to grow, my catheters to sit right. But if we're going out to an event, then I have a lot of clothes that I have made myself. They are what my going out clothes would be. But everyday stuff, no, I just wear maternity clothes.
[00:08:07] Carole Blueweiss: Can you tell us a little bit about clothes that are suited for you?
[00:08:11] Kathryn Paylor-Bent: The problem with sitting all day is clothes are designed by the designers to be stood up in, to be walked in, to be showcased standing. And they never think about the practicalities of sitting. So one of the problems, for example, with trousers is when you're sat all day, you actually need your waistbands to be in a completely different position. So they need to be lower at the front and higher at the back. Otherwise we end up with this very drafty back.
[00:08:45] If you get too much material just sat against your body, it can rub and you can get really bad pressure sores and irritations. So the whole dynamics of how you design clothes is completely different for somebody with a disability or who is sitting all day long.
[00:09:06] Carole Blueweiss: There are different disabilities that also, I'm guessing, different specific modifications.
[00:09:15] Kathryn Paylor-Bent: Yes. For example, I've got catheters and feeding tubes, so I need to be able to access those. So I've got clothing that instead of having a central zip at the front will have a zip either side. And it's sort of like a flap that comes down. Very much baby drawers really, just in a different, more fashionable cut. But it's very much going back to thinking about how changing nappies on babies and that sort of access that you would require, we need it in our clothing as well. Elastic and things like that has, and fabrics as well have changed so much in the last 20 years even. It's not just disabled, it's elderly, it's infirm, it's older generation. They all benefit from having accessible clothing.
[00:10:09] Carole Blueweiss: Are there any stores in the world that you know of that actually focus on this population of people with disability?
[00:10:18] Kathryn Paylor-Bent: No, not a mainstream store, there isn't. I do know that Tommy Hilfiger has an adaptive range. Tommy Hilfiger Adaptive because he's got a child that has a disability.
[00:10:32] Carole Blueweiss: How do you find Tommy Hilfiger's clothes?
[00:10:35] Kathryn Paylor-Bent: I haven't personally tried them. I am aware of them because of the networks that I'm involved with. I do quite a bit with Open Style Lab, which is a US-based advocacy service, who I've been doing some work with recently. So it was one of the ladies on that that I was talking to. She uses them 'cause she's got dwarfism. They're perfect for her because the kids clothes are fashionable and funky. And she loves them. From my understanding, is that he covers a wide base of disabilities, but I haven't personally been to any of the stores to have a look.
[00:11:16] Carole Blueweiss: If Tommy Hilfiger were listening to this podcast, what would you like him to know?
[00:11:24] Kathryn Paylor-Bent: I'd really like him to know that there are adaptive designers out there who are working really, really hard in the field, but are so unseen at the moment. And because he has an adaptive range and because he's got disability in his family, he has got the power to collaborate with us, to shine a light on what we do, and to make a bigger noise in the sector than is being made.
[00:11:56] He needs to invest in the little people and he needs to bring them along on the journey. And open his range up because it's very specific at the moment and it covers a limited number of disabilities. So open it up, be more inclusive, be more size inclusive. And come work with us. There's some amazing designers that have got some fantastic ideas, but our voices just aren't heard in the mass huddle which is fashion.
[00:12:29] Carole Blueweiss: I guess it's more fun and more economical for you to make your own.
[00:12:33] Kathryn Paylor-Bent: Yeah, I do like just to make my own. And it's price point as well. We're heading to London for the week after next. So I'm hoping that we can pop to his London stone and have a browse and see what there is.
[00:12:49] Nothing for us without us.
[00:12:53] Carole Blueweiss: Tell me what that means to you.
[00:12:55] Kathryn Paylor-Bent: If you are designing something for the disabled community or you're bringing a range out or opening a shop, then don't assume what we need. Come and talk to the disabled community. Come and let us tell you firsthand what it is that we need. And it will succeed. Where we have a problem is where people assume that they think they know what it is that we need, or what would be suitable, without doing proper research or having proper dialogue with a community, and then expecting us to just go, oh, lovely, thank you very much.
[00:13:35] Carole Blueweiss: You experienced that?
[00:13:38] Kathryn Paylor-Bent: Yeah, quite quite a lot. Ableism is its name and it's where people who are without disability assume they know what is right for us. It's very common in society. It's very common in design. And it's not always done out of malice and badness. It's done out of lack of education, but we're in 2022 now. It's a sad state of affairs if in 2022 we can't get it right by just having open and honest conversations with the community.
[00:14:15] Carole Blueweiss: Can you give some examples?
[00:14:19] Kathryn Paylor-Bent: For example, digital ableism is something that we're impacted with quite heavily on platforms like Facebook and Instagram, because they changed their algorithms in 2018 to protect the disabled community from trolling and hate speech, which is very admirable of them. But in doing that, the consequences were it's actually heavily affected our reach and what we can talk about as a community. So anything that mentions disability or health conditions, medical procedures or devices, is really heavily controlled. And so if anything like that's mentioned, our posts are banned, our adverts aren't allowed.
[00:15:11] And so in their way of trying to help us, it's actually caused a lot of problems for us. My understanding is they will have put a bunch of words into their computers and said, if it says this, we can't have this. If you say this, this can't happen. But across the board, that means there's a swarth of the community that can no longer talk about things that up until then were fine. We can't beat the algorithm.
[00:15:43] A better example was when I had my peg fitted, I was in hospital and I was documenting my journey all the way along, but anything that actually showed the peg - not that I was showing anything gruesome - I was literally showing a bit of plastic. Or anything that referenced why I needed it due to condition, those posts were not allowed, they were banned. So it would come up straight away saying that there was an error and you couldn't post them. Or there's something called shadow banning where they will suppress your reach. So if you regularly get a thousand people looking at your post, they would suppress it down so maybe only 20 or 30 would actually see it. I've known people that have been shadow banned for months. So yeah, it's really difficult to have free speech when you're talking about your everyday life. I've had photos of me and my wheelchair that have been banned. I'd love to not show my wheelchair, but my wheelchair's my legs.
[00:16:50] So it's like, how do I document what's happening in my life and show how I live and how I get around being disabled and make a go of it when I can't actually, because a computer is telling me I'm not allowed, or AI is telling me I'm not allowed.
[00:17:12] Carole Blueweiss: It's shocking and scary. I never even considered that. That's one of the reasons I want to make my podcast, which makes maybe podcasting that much more powerful because not yet anyway, no one is -
[00:17:24] Kathryn Paylor-Bent: Shadow banning.
[00:17:25] Carole Blueweiss: No one's shadow banning podcasts yet.
[00:17:28] Kathryn Paylor-Bent: And that's the beauty of LinkedIn as well. LinkedIn allow us to show our pictures, to talk about what we've got, and there is no issue on there. So there's a lot of disabled activism that is happening on LinkedIn because it's allowing free speech and open conversations about it.
[00:17:48] Carole Blueweiss: This started with the idea of that quote, saying nothing for us without us. So you're saying that Facebook, for example, could have sat down with a bunch of people with disabilities and asked how can we serve you as opposed to just banning everything?
[00:18:05] Kathryn Paylor-Bent: Yeah, exactly. Just having the conversation. Hands up, there are some extremely vulnerable people within our community. So the reasoning for doing it, fully understand, but there's also some people who aren't vulnerable and who are up for taking on the challenge and supporting others. And it's those people that I think are, and I'd class myself as one of those people, who are willing to take on the conversations that people don't want to have.
[00:18:38] We're willing to have the discussion and explain ableism. Or explain anything that people want to ask us. And it would've been nice to have that opportunity rather than the blanket of, well, you know, you're disabled, you're vulnerable. I don't class myself as a vulnerable member of society.
[00:19:00] Carole Blueweiss: That brings up that idea that all disabled people are to be pitied, so to speak, even without the conscious realization that you're doing that. Even out of a good heart, however, it's not a positive outcome for the people who are disabled. And there has to be that understanding, well, why? Right? You might think you're saying something kind, but in actuality it's quite caustic, right?
[00:19:25] Kathryn Paylor-Bent: Yes. Yeah, very much so.
[00:19:29] Carole Blueweiss: What does that mean to be vulnerable to these trolls? What's the danger?
[00:19:33] Kathryn Paylor-Bent: So everyone always likes to give the disabled community advice. Have you thought about drinking green tea? Have you thought about having a bit more sunlight? That will solve your problems. And it's like, okay, thank you. But we don't need that. Or people would say things that they knew were offensive, they knew were just the wrong things to say. And if you are getting that over and over and over again from complete strangers who have no idea about your situation, your mental health, your condition, it really starts to affect you.
[00:20:10] And people have really badly hit with depression. There's been suicides and it's wrong and it's really bad. But there is a section of the community that actually thrives on this trolling and causing people hurt and pushing people to the limits. And that is what they were trying to prevent, which that's right. There should be some controls over that, but at the same time and it might be controversial, but if you're gonna have a Facebook account and you're gonna put yourself out there, there is a certain part of it that you have got to be prepared for criticism. You've got to be prepared that what you say, people don't like, and if you are not prepared to accept what people's comments, are you really strong enough to have an account like that? Or at least an open account that's open for anybody to see.
[00:21:16] Carole Blueweiss: Tell us about your son.
[00:21:19] Kathryn Paylor-Bent: My son is 15 now. And he is diagnosed autistic, ADHD, comorbid anxiety, and he has severe mental health challenges. We're in that glorious puberty age, which is a nightmare anyway. And then a bit of neurodiversity, it's fun. Very fun. So we've currently got a 15-year-old who's six-foot-four, but actually has a learning age of a 6-year-old.
[00:21:54] And it is very frightening and scary because he doesn't want to be a big boy. He doesn't feel like he's a big boy, but his body is doing otherwise and saying otherwise. And so we are dealing with all of that. The grieving of not being a little boy, even though he still thinks that he is, and just him not understanding what is happening to his body and why is it changing. Yeah. So, that's difficult at the moment for him.
[00:22:22] Carole Blueweiss: How old was he when he was diagnosed?
[00:22:26] Kathryn Paylor-Bent: He got his official diagnosis at seven. We had known for a long, long time that there was something not quite right, but any time that it was raised, we were always given the reason that it was my disability that was causing Tom's issues. Not only are you trying to adjust your head to yourself being disabled, you're then sat there with all the guilt of my child is behaving in this way because I'm disabled. So actually that's my fault as well.
[00:23:00] Carole Blueweiss: Wait, whoa whoa whoa whoa whoa. Let's just back up on that for a second. For a moment, did you believe that?
[00:23:08] Kathryn Paylor-Bent: Yeah, because all the professionals were telling us that. We'd raised it when he started nursery and then he went up to school. We'd raised it, consistently raised it, and all of the professionals always came back and said, he's an only child and you're disabled. He's with adults all the time. So he was used to only being around adults.
[00:23:36] So the excuse for his very, very advanced, I mean, he spoke like a gentleman at the age of three. His speech was way beyond what a normal three year old was, but we were told, well, he spends a lot of time with your dad and your dad's very eloquent. There was always an excuse. There was always an excuse of it's 'cause mom's disabled.
[00:24:00] We believed it for a long, long time. Over here, we've got teachers called SENCos, so there's special needs coordinators in the school. And the idea is they're the specialist in the school. So if your child has a special need, they would pick up on it and they would bring all of the extra professionals in to help you.
[00:24:21] So he was in the SENCo's class for a full academic year. She never picked up on the fact that he had any condition. She just classed him as a dreamer, as a loner. And it was blamed on us again, it was bloomed on my disability.
[00:24:39] Carole Blueweiss: Wait, but wasn't he in that class because they noticed something?
[00:24:44] Kathryn Paylor-Bent: No, that was an educational psychologist had come into Tom's class to meet another child who was going through the process of getting a diagnosis. And he walked straight in and went to Tom, assuming Tom was the little boy he was going to meet. Because he hadn't met anyone in the class. And the teacher's like, oh no, you're not here to see Tom, you're here to see whoever. And he says, well, when am I seeing this little boy? And the teacher said, oh, there's nothing the matter with him.
[00:25:12] His mom's disabled. He's an only child. And she give the whole da, da, da. And he turned around and he said that little boy's got autism. And she's like, no, no, no, no, no. He's fine. And he said, I'd like to do an assessment, just to prove you're right. And he went for assessment and he aced all of it.
[00:25:32] And he came out, it took three years of going through assessments because the process in the UK is not fast. But yeah, it was the biggest sigh of relief I think we've ever breathed because finally we understood that it was nothing that we could have done being parents. It was nothing to do with the fact that I was disabled. This was a condition that we had no control over. And the relief from just getting that diagnosis was unbelievable.
[00:26:09] Carole Blueweiss: If I heard this story secondhand, I would not believe it.
[00:26:13] Kathryn Paylor-Bent: Right, yeah.
[00:26:13] Carole Blueweiss: So given that story, that seems to me a lot of ignorance and a lot of blaming and a lot of prejudice. I'm sure there's a more sophisticated word for people in wheelchairs. To have that blame put on you in your case, it was in your face because you had a concrete situation, but what does that mean for other people that are disabled in your community, how they're looked upon?
[00:26:41] Kathryn Paylor-Bent: It's very true. And the sad thing is that we are now seven years on from Tom getting his first diagnosis and nothing has changed within the whole setup. Once we knew it wasn't us, it lit a fire under us that we were going to fight as hard as we could to get Tom in the right educational setting with the right teachers. And we fought hard because we met a lot of parents and heard a lot of stories. And the stories aren't changing, the narrative has not changed. Children here are still not getting the diagnosis early enough. Parents are still struggling with this. You've got a badly behaved child, or it's your family situation.
[00:27:33] And it's just heartbreaking because I know how much credence we put on what professionals were saying to us because they are the professionals. And you tend not to question them because you think this is their job. They see it every day. They know what they're talking about, but we've learned that that is not necessarily the case.
[00:27:56] And actually, if something doesn't feel right, you are well within your to question it. We went as far as going to court to make sure Tom got into the right school, because we knew that where he was was damaging him. We've had Tom be suicidal from about seven and a half, eight. And we are very tuned into how education settings or people affect how he is and how he reacts.
[00:28:27] And we knew what he was entitled to. And we took it all the way to court because there was no one saying that he couldn't have it. So yeah, we've spent a lot of time fighting. We will fight until the day we die for both myself and for Tom and the community, because it's not right. There is a lot of ignorance, but there's a lot of ignorance and people aren't interested in learning how to change.
[00:28:58] And that's the sad thing. Especially in this area, we've got a huge problem with child mental health services. We don't actually have beds in our area for any child that would have to be hospitalized. So a couple of years ago, Tom made an attempt on his life, which automatically you get pulled into all the crisis teams that come in and there was talk of him having to be admitted to mental health hospital, but there are no beds where we live.
[00:29:31] Carole Blueweiss: No beds or no beds available?
[00:29:34] Kathryn Paylor-Bent: No beds in our area. None. They closed the hospital down. So Tom would go to the next available bed in the country. It could be anywhere in the whole of England. Couldn't get my head around - first of all, the fact that he'd have to go somewhere is traumatic enough, but the fact that I'd be putting my son in a car with a stranger to drive four hours south, six hours south. I wouldn't be able to visit every day. That would be impossible. And I'd just have to trust that he was safe and well. It blows my mind that it's even deemed as a solution. It's like it can't, how? But yeah, Durham has no beds for children with mental illness. None at all. Our closest is an hour and a half south. It's a very, very broken system in the Northeast of England for child mental health services, unfortunately.
[00:30:38] Carole Blueweiss: What ended up happening?
[00:30:41] Kathryn Paylor-Bent: We're very fortunate that his psychiatrist worked with us to keep him safe and to keep him at home. It has been a very difficult 18 months, and we're not naive enough to think that it's a never, because the way that he is, it's gonna be an if rather than a when with Tom, because he is so unstable. But for as long as we can keep him at home as safe as we can, then we will. We'll fight hard.
[00:31:11] Carole Blueweiss: How has this affected the relationship with your husband?
[00:31:15] Kathryn Paylor-Bent: He is an absolute rock, honestly. He has stood by everything. He's been there when I've been on life support. He's been called in a hospital when I've had seizures and he's been told to come and say goodbye. He's been to every appointment that either myself or Tom's had. And we're a team. He's neurodiverse. So he's currently on the adult pathway for autism because as Tom grew and the more he presented, the more he saw a lot of himself in Tom, and it would not surprise me at all. If he gets a diagnosis.
[00:32:00] It has affected Nathan. It has impacted him. He's had depression for a long time. He did try to become my sole carer and it didn't work well. He needs to be able to go to work, to have different conversations, to take his mind off things. Because home life can be pretty intense at times. But we found a way that works and yeah, we just take it a day a time and we've got through the day, it's like, great. Okay, we'll have a sleep and we'll try again tomorrow.
[00:32:34] Carole Blueweiss: I wanna go back to your sewing business and how having your son and your sewing business, if there's been any kind of sewing for him?
[00:32:43] Kathryn Paylor-Bent: Yeah. So, there has. I'm banned from making clothes for him because he's a teenager now, so that's not allowed. But he's very sensory and reacts really well to weighted items. So I'd started making like little sausages that would go around his neck, just to keep him grounded. And it grew from lap pads into weighted blankets. So that's one of the things we provide at Seated Sewing is we will make a weighted blanket that is 10% of your body weight, which is the best ratio. And we'll make that in whatever fabric you like.
[00:33:26] If there's something that we don't stock, we'll source it for you. And then the backing of them is always some sort of sensory material. So it'll be a Teddy bear fleece. It'll be whatever the person wants, really.
[00:33:40] Carole Blueweiss: How do they describe to you what they need? Or if somebody wants to order something?
[00:33:44] Kathryn Paylor-Bent: It's a bespoke service. We'd have a conversation with them because it is so bespoke, it would involve them either coming to me or me going to them so that we can measure them and make sure that we've got all of the measurements that we need from them. If it's for a wheelchair, we need the length of their leg and what their position is that they're lying in or sitting in.
[00:34:08] Carole Blueweiss: When you say bespoke, what does that mean?
[00:34:11] Kathryn Paylor-Bent: Bespoke is it's made specifically for you. So it is to your fabric choice. It is made to measure for you and your requirements.
[00:34:23] Carole Blueweiss: And could somebody do a Zoom session with you and have someone else take measurements?
[00:34:28] Kathryn Paylor-Bent: Certainly. I have a program on my computer and because we are able to screen share with Zoom, I can show them exactly on a little dummy where I need the measurements. And if there's somebody in the room with them that can take the measurements, then we can certainly do it that way, yeah. The pieces that we make are specifically made for the person.
[00:34:52] Carole Blueweiss: Have you approached designer labels and stores outside of England or a network of other designers with your talent and so forth?
[00:35:01] Kathryn Paylor-Bent: I haven't. I'm starting to become more vocal about it. I was speaking to a designer earlier and like, I really struggle just nominating myself for things or shouting about it or saying, come on guys, you need to look at what I'm doing. So we are gonna be working on that. We're gonna try because of the perspective that we come from and life experience, we've got a very unique selling point. And I think I just need to be braver with getting out there and shouting about it.
[00:35:33] Carole Blueweiss: And when you say very unique, what do you mean?
[00:35:37] Kathryn Paylor-Bent: The fact that everything that we sell are things that our family uses on a day to day basis. So we sell weighted blankets. Well, that's because my son's got autism. We sell peg protector pads that can be used for feeding tubes or catheters because I use them every day.
[00:35:57] The hospital packs have been put together that contain everything you would need for a comfortable night stay if you were going in for surgery, or if you had a loved one in hospital. That's come over years and years of experience. I have a hospital bag that's packed 24/7. It's just a go bag. We've done a lot of research and development on the sort of fabrics that work better.
[00:36:21] I don't think many brands can put the hands up and say, actually we use our products every day. And this is how we know they work. It suddenly doesn't work, we'd go back, we'd redesign it and we try it ourselves before anything comes to market.
[00:36:42] Carole Blueweiss: Do you have anyone in your life who's been an inspiration for you?
[00:36:47] Kathryn Paylor-Bent: I think I take it from a lot of people. My husband is an inspiration, just the fact, the stickability and what he's been through and seen and had to deal with and how he copes with that on a day to day basis is mind blowing. I like to take inspiration from lots of different people.
[00:37:07] For example, Isaac that I made an outfit for. He was born without any arms and very short legs, but there is nothing that has stopped him. He's been skating, he's been skydiving. What that man hasn't done is just immense and you think of anyone, you've got a perfect excuse to stay home and do nothing, but he's like, why should I? This is my life. I wanna live it. And just that passion for getting out and adventures and trying new things and not letting anything stop you, I think is extraordinary. Being around people like that has shown me that anything's possible.
[00:37:53] Carole Blueweiss: What do you do to take care of yourself?
[00:37:57] Kathryn Paylor-Bent: I love sewing just as a hobby. I do it as a business, but then I love it if people like friends and family will come and ask me to do little projects. I also do a class of watercolor painting. So it's just once a week for an hour and a half. And the doors get closed. The boys go upstairs and do what the boys do. And I've just got my room to myself and I can just paint. So it's a lovely switch off. I really enjoy it.
[00:38:28] Carole Blueweiss: Show me your sewing machine.
[00:38:31] Kathryn Paylor-Bent: I'm already prepped in my chair, so we didn't have to do another transfer.
[00:38:37] Carole Blueweiss: You have two wheelchairs?
[00:38:38] Kathryn Paylor-Bent: Yes. I've got a big electric chair, but I've come in my self-propel one this time. So I'm just wheeling myself over to the other side of the room and it's all set up. And I do this. It's a big industrial thing. [whirring sewing machine sounds]
[00:38:58] So, this is what you'd normally see in a factory, but 'cause I do so much sewing, I've got an industrial sewing machine. This is a lap pad that I'm making for a gentleman in some funky retro Herbie fabric.
[00:39:12] Carole Blueweiss: What is your dream for your business?
[00:39:15] Kathryn Paylor-Bent: Ultimately, I want to get it to the point where we can open it as they're called CICs here. It's a bit like a charity. So that we could run apprenticeships for children like Tom. So he has a career, but then open it up to others within his school who are needing apprenticeships and skills and have a passion for sewing. We really want to get to the point where we have enough business coming in so that those children can be taught how to sew and they can turn out beautiful products and we run them through an apprenticeship or we run it as an enterprise.
[00:39:55] So that. If they're really happy with just staying with sewing, then they can do that. But if they're like the more techy side and they wanna be more website driven, then they can do all of the technical bits that I don't really understand.
[00:40:12] Carole Blueweiss: Would these people get paid?
[00:40:16] Kathryn Paylor-Bent: Yeah. Over here an apprenticeship, they get a small allowance while they're learning. So it would involve them going to college while also coming to us. And then once they have passed that to whatever degree, even if they don't pass, it doesn't matter because if they're really good at just sewing blankets, then we happily pay them to just sew blankets. We just want them to have a job and feel like they're useful. And it's something they can do.
[00:40:45] That's our long term goal that we will be able to scale up to a point where we can offer that to Tom and whoever else is interested. It doesn't even have to be neurodiverse. It will be somebody with a disability of some sort, whether that be mental or physical. That's our unique selling point is we are disabled and we are doing it for other disabled.
[00:41:10] Carole Blueweiss: I know here in the United States, people are always interested in when their children get older, what are some options?
[00:41:15] Kathryn Paylor-Bent: Yeah.
[00:41:16] Carole Blueweiss: And I think people will be inspired by your idea.
[00:41:20] Kathryn Paylor-Bent: We know we're having to start and think about for Tom. So it's like, there's not just gonna be us in the Northeast who's got a son like that who don't really have anywhere else we can send them all or things that they've got an interest in, but if it's something that they can develop, then great. Yeah.
[00:41:43] Carole Blueweiss: Sure, a skill.
[00:41:46] Kathryn Paylor-Bent: Yeah.
[00:41:46] Carole Blueweiss: Feeling needed and productive.
[00:41:50] Kathryn Paylor-Bent: Just to feel valued and that their life actually does have a lot of meaning and it's worth getting up every day for, because if, once you lose that, it's very, very difficult to get it back. And we know firsthand how hard that is. And through all of it, if Seated can help one family have an easier journey through either getting an autism diagnosis or becoming disabled, then we've done what we've set out to do.
[00:42:28] Carole Blueweiss: I interviewed Kathryn a second time because I saw on LinkedIn a post saying that she was in the hospital. And so I was concerned and I wanted to know what was happening. So once she was home, we got in touch with each other and she agreed to talk to me on Zoom again. And she told me her story, how she went to a movie theater and there was no wheelchair access other than the very front of the theater. So she was seated in front of the front row. Now, if you've ever been in a movie seated in the front, you know what it's like, where your neck is extended backwards and your head has to look up. After a while, Kathryn felt some numbness and then tingling through her right arm. And eventually her arm felt completely numb.
[00:43:18] So she went home, hoping it would go away. But when it didn't, she called the hospital, described what was happening and they were concerned it might be a stroke. So they sent an ambulance right away. She was waiting in the hospital 12 hours before she was put into her room. And before she had her first CAT scan. Two weeks later, she was finally discharged and she got her tests back. And what was the result?
[00:43:44] Kathryn Paylor-Bent: The results were I hadn't had a stroke, which is exactly what we had thought. I've got more degeneration in my neck and I've got bulging discs, which have been pressing on nerves.
[00:44:00] Carole Blueweiss: And did they listen to you when you said it potentially could be because of your spine situation and that you were just at the movies?
[00:44:07] Kathryn Paylor-Bent: No. No. So what they, even after they said, well, maybe it's not a stroke. They decided that it may be something called FND, stands for functional neurological disorder. I was told that if I went home with a positive mindset, then I would probably get the use of my arm back. Just think positive and get over it. And use it. And I'm like, well, I'd love to, but it's not working. I can't, like come on, guy.
[00:44:42] Carole Blueweiss: So at any point, did they call in physical therapy?
[00:44:46] Kathryn Paylor-Bent: Yes, I had a physio that came to see me on the ward. All that they kept writing in my notes is that I'd made great progress. Their definition of great progress was I'd had some flicker in my muscles and I got to the point I could move my fingers. That was proof that it was FND 'cause I'd got some movement back. Because I got a lot of questions, like have you had any trauma? Are you upset? Are you in a rough period in your life? And I'm like, no, I said. And the assumption was quite funny.
[00:45:21] I'm quite used to it now for medical doctors. So they obviously see my wheelchair. They know that I've got spinal injury and the assumptions that are made straight off without speaking to me. So the consultant came in and he said, so what do you do? And I says, well, I run two successful businesses and he just looked and he went, you run businesses? Yes. And I said, actually I drove us to the cinema. You can drive? And I said, look, I might be in a wheelchair, but that doesn't mean that I don't do things and I haven't got a life. I do. And I'm quite capable, I think. Don't make assumptions about me. [dog barking]
[00:46:10] Carole Blueweiss: Was that your dog in the background that I was hearing?
[00:46:13] Kathryn Paylor-Bent: Yes. She hears the gate open before we even know there's someone in the garden. So she was warning us. She's called Shadow and she is a black cockapoo. And we got her after we'd done some training with a UK charity called Dogs For Good. There's a very big waiting list to get service animals in the UK.
[00:46:38] And they're really expensive. So you need to do a lot of fundraising to raise the money for them. Dogs For Good were also running a program where they would teach you how to train your own dog to be a service dog. And then on the very last day of the course, I got a call from one of my best friends who said, I think I found a dog that will work for training and it turned out to be Shadow.
[00:47:04] We have trained her to be Tom's autism assistance dog. And she goes everywhere with us. She's got a little jacket that says that she's a service animal. She's been on the London Underground this week. The only thing she hasn't done is been on an airplane, but we've had her on ferries and everywhere we go, she comes with us. And she's absolutely opened up our life because Tom, for a long time would run. If he got very worried and stressed, he would just run. We have a harness that we put around him so that he's in charge of the dog. And Shadow was trained that if she felt that he was gonna start and run, she'd just sit down. And that would stop him from running. We've also trained that when he is upset, she goes and she licks the tears away from his face or gives kisses.
[00:47:59] Also, if he's really agitated, we can sit her on top of him and it's like a weighted blanket really, but just the interaction and having to stroke her and having to concentrate on the dog for a little bit can be enough to bring him out of whatever meltdown he's in. So she's amazing. She's absolutely a fantastic little animal. We got her socialized and happy around other animals, but then when she puts her service coat on, she becomes a different dog. She knows she's working. She knows she's got to stand by our side.
[00:48:39] Carole Blueweiss: And does Shadow help you, too? Tell me a little bit about your relationship with Shadow.
[00:48:44] Kathryn Paylor-Bent: She's technically Tom's dog, but actually, yeah, she's Mom's dog, really. We haven't trained her to help me in any way, but she has instinctively picked it up. If my blood sugars drop, she comes and warns me. She licks me and she warns Nathan. If I'm about to go into a seizure, she warns us. But this isn't something we've trained her for. This is just something that instinctually she knows, and she understands, and it's really bizarre, but yeah, she's a life saver.
[00:49:20] Carole Blueweiss: Can I meet her? Is she in the room?
[00:49:21] Kathryn Paylor-Bent: Yeah. Shadow! Shadow, come on, come. Oh, she's up with Tom at the moment.
[00:49:32] Carole Blueweiss: Can I meet Tom? I would love to meet Tom. [dog barking] Hi, Shadow. Do you do Zoom, Shadow? [dog barking]
[00:49:47] Kathryn Paylor-Bent: Here's Tom.
[00:49:48] Carole Blueweiss: Hi, Tom.
[00:49:48] Tom: Hello.
[00:49:49] Carole Blueweiss: Hi, my name's Carole.
[00:49:51] Tom: Hello, Carole.
[00:49:52] Kathryn Paylor-Bent: I've been doing a podcast with her and talking about some of the challenges of being autistic and some of the ways that Shadow's been helping you as well.
[00:50:02] Tom: Oh, lovely.
[00:50:04] Kathryn Paylor-Bent: So what sort of things can Shadow do for you, Tom?
[00:50:08] Tom: Well, she can shut me up.
[00:50:09] Kathryn Paylor-Bent: Mm-hmm, what does she do if you're sad?
[00:50:12] Tom: She licks me.
[00:50:13] Kathryn Paylor-Bent: Yeah.
[00:50:14] Carole Blueweiss: Tom, how old are you?
[00:50:16] Tom: 15.
[00:50:17] Carole Blueweiss: And what do you like to do for fun?
[00:50:19] Tom: Play video games.
[00:50:21] Carole Blueweiss: What's your favorite video game?
[00:50:22] Tom: Oh, couldn't tell you that.
[00:50:25] Carole Blueweiss: Do you played a lot of different ones?
[00:50:26] Tom: Yeah, a lot of different ones.
[00:50:27] Carole Blueweiss: A lot of different ones.
[00:50:29] Kathryn Paylor-Bent: You like Roadblock and very much into Dr. Who at the moment, which is a UK.
[00:50:35] Tom: It's something that Americans wouldn't understand.
[00:50:37] Kathryn Paylor-Bent: It's a UK program, isn't it?
[00:50:39] Carole Blueweiss: You can tell that I'm American, Tom, right?
[00:50:42] Tom: No, I couldn't tell.
[00:50:43] Carole Blueweiss: Oh, I'm very American. I'm talking to you from New York.
[00:50:46] Tom: What time is it there?
[00:50:47] Carole Blueweiss: That's a good question. It's 9:32.
[00:50:50] Tom: In the morning or evening?
[00:50:51] Carole Blueweiss: In the morning.
[00:50:52] Tom: I never understand timezones.
[00:50:54] Kathryn Paylor-Bent: You've been to New York, haven't you?
[00:50:55] Tom: Of course I have.
[00:50:56] Carole Blueweiss: I heard you were recently in London. Is that right?
[00:50:59] Tom: Yes.
[00:51:00] Carole Blueweiss: What was your experience in London? What did you do?
[00:51:03] Tom: It was great.
[00:51:05] Kathryn Paylor-Bent: You went onto HMS Belfast, didn't you?
[00:51:07] Tom: Yeah, it's a battleship that served in the Second World War, a UK battleship. You probably have never heard of it.
[00:51:13] Carole Blueweiss: No, but tell me about it.
[00:51:14] Tom: Well, it's a battleship.
[00:51:18] Kathryn Paylor-Bent: What sort of things does it show you on there?
[00:51:20] Tom: It shows you the weapons, the med bay, the kitchen.
[00:51:27] Kathryn Paylor-Bent: Does it show you where they used to sleep?
[00:51:29] Tom: Yes, it does.
[00:51:31] Carole Blueweiss: Did you find it interesting or was it boring or what did you think of it?
[00:51:34] Tom: No, I go there nearly every time we go to London.
[00:51:37] Carole Blueweiss: Do you like things about World War II?
[00:51:40] Tom: Yes.
[00:51:41] Carole Blueweiss: If you were gonna tell kids your age about the war, what would you want them to know?
[00:51:46] Tom: Well, there's a lot of stories of alliances and betrayal and, well, that's pretty much it. Certain others don't agree with me.
[00:52:00] Carole Blueweiss: What don't they agree with?
[00:52:02] Tom: The whole war.
[00:52:04] Carole Blueweiss: So what do you feel strongly about that you think they should also agree with you?
[00:52:08] Tom: I don't agree with anyone. I don't talk with anyone. I don't trust anyone.
[00:52:13] Carole Blueweiss: Is it because you're afraid that they'll just not understand you?
[00:52:16] Tom: No, it's not that. It's just that I don't trust people at all. I have major trust issues.
[00:52:22] Carole Blueweiss: I see. Do you trust your mom and dad?
[00:52:26] Tom: Mom, yes, but Dad, not so much.
[00:52:28] Kathryn Paylor-Bent: Stop it. I'm not lying, I'm agreeing. Do you wanna say thank you to Carole? And then we'll.
[00:52:34] Tom: Thank, thank you for letting me talk to you.
[00:52:37] Carole Blueweiss: Do you have any questions for me? Do you wanna ask me anything?
[00:52:40] Tom: Can I never come here again?
[00:52:43] Kathryn Paylor-Bent: You can never come here again.
[00:52:44] Carole Blueweiss: I just want to thank you. I really appreciate it. You were put on the spot and it really was quite unfair, so I just wanna thank you for just talking to this total stranger without any warning.
[00:52:55] Tom: No, don't worry.
[00:52:56] Carole Blueweiss: And it was really nice to see you with your mom and with Shadow. It really helped me understand your home, because your mom is an extraordinary person. I'm learning so much about how she's doing her businesses and how she's coping with a lot of different things. And it's important that people understand people, right? Like that. To hear the stories. So thank you, really, from the bottom of my heart.
[00:53:16] Tom: No problem.
[00:53:17] Carole Blueweiss: All right.
[00:53:17] Kathryn Paylor-Bent: Thanks, Tom.
[00:53:18] Carole Blueweiss: Bye. That wasn't fair.
[00:53:22] Kathryn Paylor-Bent: That's okay, he's fine.
[00:53:26] Carole Blueweiss: But that was nice to see because even in my imagination, you speaking about Tom, I create images in my mind. And they were not at all.
[00:53:35] Kathryn Paylor-Bent: Not what he's like.
[00:53:36] Carole Blueweiss: What I expected, yeah. So it's really nice to put the two together and just even realize that you can't really go by description.
[00:53:49] Kathryn Paylor-Bent: No, and it is really hard to describe. Because there's so many different facets to him as a person. And yeah, it's just so difficult to...and you don't know what you're gonna get when you ask a question and we don't. I'm not surprised he said he trusts me and not dad. He has got real big issues with trust. He does trust his dad. It's just this weekend, he's not happy with him. So dad's the enemy at the moment.
[00:54:16] Carole Blueweiss: So that made sense.
[00:54:18] Kathryn Paylor-Bent: Yeah.
[00:54:18] Carole Blueweiss: It's interesting to me that he can actually articulate that he has issues with trust.
[00:54:25] Kathryn Paylor-Bent: Yeah.
[00:54:26] Carole Blueweiss: So he can analyze his own behavior or is it because he's heard people tell him that? What do you think?
[00:54:31] Kathryn Paylor-Bent: I think a lot of it is he's heard over the years, professionals have told him that he's got issues with trust and it's very much something that just sticks in his mind. And I think with the education system, he's been let down a lot. So he's had times where teachers have moved on and he's not been warned or they'll pull students out of his class that he really got on with. And so he doesn't want to build relationships because he says, well, what's the point because they're gonna move. They're either gonna be taken away from me. So why should I trust them? Why should I get to know them? Why should I make friends if they're just gonna move on.? He's very much a solo player of I've gotta make sure I just keep myself happy because no one else can.
[00:55:24] Carole Blueweiss: Hmm. There's a lot of wisdom to that.
[00:55:27] Kathryn Paylor-Bent: There is. Yeah, he's a very deep thinker at times.
[00:55:34] Carole Blueweiss: I could tell by what he said about World War II, that was a very analytic answer. One sentence. I mean, he really summed it up so well in a very sophisticated way.
[00:55:46] Kathryn Paylor-Bent: Yeah.
[00:55:47] Carole Blueweiss: Like he gets it.
[00:55:49] Kathryn Paylor-Bent: Yes, he does. And so much, but he doesn't trust himself that he understands.
[00:55:56] And it's trying to get him to understand actually, you know so much more and you are capable of explaining to people so much more than you think you are. But I think for so long in education, he's been told that he doesn't understand or he's not good enough. And so he's now got this belief that what he knows isn't important to anybody, cuz no one wants to hear it.
[00:56:22] And it's like, actually, no it's really important. And your understanding of the world is really important and people do want to hear it. But sadly, through growing up and the experiences he's had, he doesn't believe that. And he doesn't think it's true.
[00:56:43] Carole Blueweiss: Well, he's taught me a lot, you know, both of you have. And it shows that for those of us who are speaking to people that have differences, the power of listening and the power of allowing who you're talking to to know that you are listening and that you are interested is huge. In the school system, when teachers have multiple kids, they probably don't really feel as heard. And then they don't always have parents like you. But then the parents have to really understand a child that's very different from who they are. So that takes time, too. There's a lot of challenges.
[00:57:21] Kathryn Paylor-Bent: Mm, yeah. And parenting someone as deep thinking as this, it's fun. It's fun.
[00:57:31] Carole Blueweiss: Does he sometimes surprise you with like, oh, I never thought of that.
[00:57:34] Kathryn Paylor-Bent: Oh yeah. He'll come out with things and you're like, Tom, how long have you known that? Or where did you learn it? He's like, well, I just do, I don't know. I just knew. Even with simple things like reading, he'll come out with a statement and he like, wow, Tom, I didn't know you could do that. And he's like, yeah, I learned it a couple of weeks ago, but I didn't think it was important to tell you. If we could unlock this wealth that he's got going on in his head, he could be the next Einstein. I'm sure of it.
[00:58:05] Carole Blueweiss: Does he like the sewing? I know you're training him for your company to do some sewing.
[00:58:09] Kathryn Paylor-Bent: Yeah. He likes the idea of helping others. If he knows that he's helping others and he can make a difference, then he's happy. And he gets a lot of joy out of knowing that by doing something it's made somebody happy or it's made someone's day. And that's the avenue we're going down, not necessarily the skills, but just reinforcing the fact that he's on the planet. People love him for who he is and that it doesn't matter what he does if he's helping people and making people happy. That's all we can ask. And the skills will come with time. He just needs to understand that he's a valuable member of society. And that's what we're trying to reinforce all the time is that, you know what? You are valuable. You don't have to come away with qualifications. All we ask is that you're happy and you have a passion for learning. And he does. He teaches himself in his own special way. We've not had an easy journey, but if people can learn from what we've been through, then that's great. That's all we want.
[00:59:23] Carole Blueweiss: Thank you so much for sharing with me today on Wisdom Shared., I relish all your incredible wisdom and your experience and your mission to spread all that you've learned and empower other people.
[00:59:35] Kathryn Paylor-Bent: Thank you. Thank you very much for having me. I really enjoyed it.
[00:59:43] Carole Blueweiss: Please check the show notes for more resources and to learn more about Kathryn's businesses. Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.