https://www.angelawalkerreports.com/
https://www.angelawalkerreports.com/
Eating is a pleasure most of us take for granted, but for some people, their medical conditions mean their bodies can't process food and they need to get their nutrition through tube feeding. My guest today is on a mission to demystify parental nutrition. She is a disability advocate who shares her experiences on social media. I'm journalist, angela Walker, and in my podcast I interview inspirational guests and discuss under reported issues. Today I'm in conversation with Celia Chartre-Arris. Hi, hello, celia. Thank you so much for talking to us today. I first came across you on social media and I saw some of your posts about how you were sharing your experiences and you're just so positive about the way you deal with your situation and your disabilities and I thought I just really wanted to talk to you to hear more. So, first of all, do you mind sharing with us your situation?
Celia Chartres-Aris:So I have a very weird and wonderful disability that not many people know about. So I was born with a genetic abnormality called Loeys-Dietz Syndrome, which is a fault in my connective tissue, which basically means my body can't produce collagen properly and all of my organs that work properly and my heart's very fragile, and my list of what's working in my body is probably very, very short compared to the list of what seems to be going wrong in my body. But one of the main side effects of it for me is that I have something called complete intestinal failure. So from my stomach all the way through my intestinal system, I have paralysis, so I can no longer eat or drink anything, not even water, and when I say that to people they get very confused about how I then survive as an individual. So I'm on something called TPN.
Celia Chartres-Aris:I've been through various different feeding tubes, such as nasogestinal feeding, which is through your nose and into your stomach.
Celia Chartres-Aris:I've been through peg feeding and then dredge feeding, which is almost permanent versions of the feeding tubes that we typically associate, which are the ones that go through your nose, around your ear and sort of hang down.
Celia Chartres-Aris:But I now have something called a Hickman line, which is basically like a giant cannula and you know, when you go to hospital you have it in the back of your hand. It's effectively a permanent version of that on my chest which gets tunnels from your chest up into your jugular and then it goes down into your heart. So all of my nutrition completely doesn't go anywhere near my gastro system and for 14 hours a day I effectively run a blood infusion which gives me all the calories and the nutrients that I need to survive, so nothing bypasses my mouth anymore in terms of food and water. So I even have to be very careful when I'm brushing my teeth not to kind of roll it down while I'm doing it. So it's a rarer form of feeding tube and I've been through the other versions. But because I want to make it kind of be stigmatized, feeding tubes and put them out into the ether, because they're still so underspoken about and rare diseases are also something that really people don't touch on very much.
Angela Walker:Yeah, I mean, if we saw someone with a feeding tube, we might notice, but we probably wouldn't mention it. We will probably be very careful not to mention it because we might have anxieties ourselves about upsetting somebody. Like, what reaction do you get from people when they see your feeding tube? Because you're so open about it, aren't you? I mean, you've done modelling with your feeding tube and proudly on show, I would say it's the reaction I get from people doesn't ever tend to be a positive reaction.
Celia Chartres-Aris:I notice that, you know grown people, not children. I treat children very differently when they react to me, because I feel like it's an opportunity to educate, that. That's something. They might not seem to fall, but I get people shouting at me on the street all the time. I've been kicked out of restaurants, but I'm fat, with my family and they're all eating, saying that I'm not a paying customer so I shouldn't be there. You know, I've been stood at a bar with, with groups of men surrounding me going what's this? Pulling on it and and you know, I guess I can't buy you a drink and all of that kind of stuff.
Celia Chartres-Aris:The reaction tends to be a mix of very negative people making fun of you, you know, pointing and laughing at you, and then the other half of the reaction is people asking questions, and I think it's so brilliant when people are asking questions because I want people to learn, but there is a approach in which you do it and there is a level of respect that you owe me as an individual and not me being high and mighty saying you know you have to treat me a certain way, but it's just about decency, about how you treat other people, and if you're genuinely inquisitive and you want to learn, that's incredible and I want to encourage that.
Celia Chartres-Aris:But if you're asking questions, do it in a polite way because you know I get people asking me and I have nothing that is to do. When you've got something wrong with your bowels in your Guts, you lose all all lack of kind of. There's nothing to do to talk about anymore. But I've had people you know in a crowded place ask me what happened when I go to the loo and they've not even introduced themselves. The same way, if you don't eat or drink anything, you know what happens when you go to the bathroom and I sort of say "hi, my name's Celia, really nice to meet you.
Celia Chartres-Aris:Shall we have a conversation before we get to that point?
Angela Walker:I'm horrified about what you're saying, Celia. I'm absolutely horrified. I mean, let's just go back a bit. That what these people have been doing, like touching your feeding tube, that's abusive. That's ass ault, isn't it? And I mean you're saying that this happens to you all the time.
Celia Chartres-Aris:Yeah, it happens all the time and I think people because my particular feeding tube is on my chest as as as someone that identifies as a woman that is a very vulnerable place of our bodies. That's a very intimate area, it's a very sexualized area and so you already feel quite conscious when I go out with my tube visible, because it's an area that people tend to look at and it's a. It's an area of a female body that people tend to notice a little bit more, but it's a very vulnerable place in my body and I would never I hope that people out there would never go up and touch your woman's chest anyway, but because there's something there, people feel like it's their right to be able to go oh, what's that? And sort of reach their hand out and my instant reaction is step back, please.
Angela Walker:This is this is not acceptable behavior. No, it's not. The only comparison I can possibly draw from that is when I was pregnant and strangers would want to touch my tummy and it's like you don't get to touch my tummy when I'm not pregnant, so you sure as hell don't get to touch it now, well, that I am, and that's the only kind of very. It's a very different example, but you know it's about somebody coming into your space, isn't it? And touching you and that's just so unacceptable.
Angela Walker:And and I know you said that that you don't mind people asking questions, but some people with disabilities don't feel like that. I, I know that there was a lady who's posting on social media about somebody who is asking her about her visual impairment, saying how long, how long have you been blind, kind of thing, and she was really annoyed about that because she was like it's none of your business. So I think people might be Interested and intrigued, but Personally I wouldn't feel In this situation. I probably would ask you because you're very upfront and you said that you don't mind me asking, but I would never dream of saying to a stranger on a bus oh, why have you got that tube? What happened to you?
Celia Chartres-Aris:then you know I just wouldn't do it and I think, around asking people questions, it's completely individualistic whether people are comfortable with that situation and it goes back to what I said at the beginning of you know, if you're gonna ask me how do I go to the loo before you've been even introduced your name?
Celia Chartres-Aris:That's not something I'm comfortable with and I'm only ever comfortable with questions If I can see that your intention is genuinely to learn about my condition and about my experiences and also Learning how to make me comfortable, because our world revolves around food and drink. So I'm sort of always very awkwardly standing in a bar or sitting in a restaurant or whatever it may be and surrounded by food, and when people make a genuine effort to make sure that I'm comfortable and okay and happy, I find very comfortable thing and it makes me feel very safe because there's a very vulnerable environment to be in. That can send me into quite a lot of panic about the environment that I'm in. So all the all about intention and about how you're asking those questions and also judging the situation Individually to is this person wanting to talk about it? Because actually sometimes when people ask me questions, I just sort of put my head in my hand with the thing oh, I don't want to do this today, like I'm not in the mood?
Angela Walker:Yeah, of course, because you're meeting different people every day. Surely you don't want to have to tell your story again and again, and again. I can totally appreciate that, and so can I ask you was there a time when you could eat food normally? Yeah, so when?
Celia Chartres-Aris:I was small, so I also have something called Marfan syndrome which is a little bit more known about. So for context, I'm six foot one and a half, so if anybody's ever met me in person, I'm a very tall girl and I was born with my disability, but it's a degenerative condition. So when I was younger I was always unwell and I was both breaking bones, you know all of that kind of stuff and but I ate like an absolute horse. I was little because I was growing so quickly because of my Marfan syndrome and then I reached sort of later childhood night, was diagnosed with various food allergies and then food started making me feel very unwell very quickly and it all happened very, very quickly and I just I couldn't keep food down and it was like my body was allergic to everything and I was losing a lot of weight very quickly. It was a very dangerous situation because medical gas lighting, unfortunately, they saw a young girl losing weight very, very quickly and shoved me in eating disorder therapy.
Celia Chartres-Aris:They wouldn't scan me and I went through that process for about two years trying to go to diagnosis and I ended up in intensive care and they finally did the motility scan which, if anybody's not aware of they basically make you swallow some tablets that have shapes in them, and then they scan you at regular intervals so that they can track how quickly the shapes are moving through your system. And they found that after 72 hours so over three days of me swallowing the tablet, the tablets were still in my stomach. They had my stomach hadn't emptied, nothing had passed through. So that was then the beginning of my journey of actually getting access to the help that I needed, but at that point I'd done kind of irreversible damage to my body through just years of malnutrition.
Angela Walker:I'm so sorry to hear that. And so how did it feel when, finally, you had that scan and there was an acknowledgement that, yes, you have got a medical condition. You're not just what I don't say, I don't mean, you don't just have an eating disorder, what I mean is and that they'd completely just made assumptions about you. Finally, you had this recognition that there was a serious problem, serious medical problems.
Celia Chartres-Aris:It felt like a massive mental relief because if anybody and I put a trigger warning here around medical gaslighting because I know for me I store a lot of trauma because of the experiences that I've gone through through medical gaslighting I've made the most amazing group of girlfriends and awards that I've been on, because we're all there at the same time, there for long periods of time and every single one of us share the same experience of. We were presumed that it was mental health induced and when I finally got that answer it was a very difficult thing to process because if you've been, you have a medical professional telling you you know the reason for your weight loss and the reason why you're feeling so unwell is because of anxiety and because you've created a negative relationship with food. You start to believe that if you're put in therapy and a medical professional is telling you you know this is just anxiety. You've just got to learn to love food again. It was a very difficult thing where I finally had my aunt through and it felt so relieving that I was right and I knew I was right the entire time. But then I had to undo that kind of medical gaslighting that had been put on me and try and unpack that trauma of not being believed for so long. And once I was out of my disability, with still ravaging my body in other areas, having heart attacks and you know, I caught meningitis which made me really unwell, and tons of broken bones and having artificial implants in my arms and all this kind of stuff. It was like a train hit me all at once.
Celia Chartres-Aris:And I remember when the doctor came in and said you're never going to eat again and I remember the first thing that came to my mind was rats. Last thing I ate was a jacket potato. How bloody boring is that. I wish I'd gone absolutely wild and just have loads of twixes in my face or something. But I remember sitting there thinking what do you mean? I could never eat anything again. I've been developing this negative relationship with food because it was making me so unwell. But it felt almost a bit like I was in grief where I thought how am I going to function in society? Everything is about food and everything is about drink. I'm never going to have my own birthday cake again. I can't eat my birthday because it happens to fall on Christmas Day. So, as you can imagine, birthdays are a very different experience for me. The birthday that came to my mind was oh my gosh, my birthday is going to be awful. I can't have Christmas lunch and I can't have Colin the Caterpillar cake. What am I going to do? It was very difficult.
Angela Walker:And so how many years ago was that Celia.
Celia Chartres-Aris:So I haven't eaten anything for about three and a half years now, and then for about six or seven years before that I was only having sort of a tablespoon of food a day because I've been supplemented by other forms of food, and it was basically eat what you can, but your feeding tube's there to back it up. And then obviously those feeding tubes started failing when the paralysis started spreading further and further through my system.
Angela Walker:So what's happening inside you right now, like with your stomach and intestines and everything, Because I suppose you know, if you're not using them, then what's going on inside your body?
Celia Chartres-Aris:So I suppose it's quite difficult to explain but, kind of stripping it back from the medical terminology, it is its paralysis, so effectively. With paralysis, what's happened with me is I don't have a movement called peristalsis. I'm sure we all learn strategies. The SC Biology is basically where your rings of muscle contract and push through. So I still go to the loop because I have waste products in my body, like we all do. But that's, that waste product is able to travel, kind of following gravity for wanting to go a bit of not as graphic as probably for individuals with pod cars, but it moves very, very slowly and it moves very in its own time, should we say.
Celia Chartres-Aris:And one of the largest problems I have is obviously stomach acid needs to filtrate itself and it needs to come out.
Celia Chartres-Aris:And one of the big problems I have is that anything that's in my stomach, it's a warm, hot, acidic environment in your stomach so things rot and effectively go off.
Celia Chartres-Aris:So that's why I'm sick all the time, that's why I have kind of bad bowel movements all the time is because effectively every coming, everything coming out of my body is effectively gone off. So it should have come out weeks ago but it hasn't. That makes me very unwell and the feed that I'm on, which comes in through my heart and through my veins, as you can imagine, pumping fat, sugar and calories directly into your bloodstream, it keeps me alive but it will cause me a liver failure at some point because you know you're not going to bring up any. One of the ingredients in my TPN is olive oil. If you try to pump olive oil into your veins, we all know that that would make you very unwell. So it's a very pouch related system of working out with some benefits and I'm still very underweight or very sick, nowhere near kind of weight maintenance, but I'm getting as much as it's safe to do so and I use the word safe and a birth of cognitive, but it does have a very negative impact on your liver and your kidney.
Angela Walker:So what's the long term prognosis then?
Celia Chartres-Aris:So, because I have an overarching Loeys-Dietz Syndrome it's a very rare and very unknown illness. My entire life I've been told the way that I'm going to pass away is from an aneurysm, which is where your aorta dissects from your heart. And unless you're lying on an operating table, the risk but the survival rate for that is quite slim and I know that that can happen any day. And as my condition gets more and more degenerative, my sort of life expectancy keeps shifting by about five years every time I go and see the doctors.
Celia Chartres-Aris:So my prognosis is I don't know how to answer that question because I'm very malnourished, my heart doesn't work properly. I have to have scans on it once a month to check the size of my water. So it's a bit of a blessing in a curse knowing how you're going to pass, but I suppose it just means take every day as it comes and just my goals are never sort of five, 10 years. Then what can I do in the next year? And just hope that all the things I want to do happen? I think yeah, Gosh, sorry.
Angela Walker:No, you're so upbeat and I just want to say thank you so much for sharing this with us, because you've been through so much and you are still going through so much and you know to talk publicly about it. I just think it's amazing because there will be other people listening who are in a similar situation, and you're still going about your life, living life to the full and achieving so much. I mean, let's talk about your work as a disability advocate. I mean, you're on the disability 100, aren't you? You're one of the most influential disability advocates. Tell us about that. Tell us about your work and how you made it onto the list.
Celia Chartres-Aris:So my work, I suppose, is very niche. There's not many people doing it, so I work with governments and policy leaders and large organisations to look at legislation and policy that governs us all every day to make it more accessible and inclusive of disabled people. Disabled people make up 20, over 20% of the population. The numbers have just dropped from one in five to one in four of us identified as being disabled. Yet the level of consultation and how inclusive our legislation is is not where it needs to be, and so basically what I do is talk to anybody that will listen to me and do lots of research, collect lots of data, put it out into the ether and try and change the law and try and change policy to make it more inclusive of disabled people.
Angela Walker:Can you give us some examples of policy I mean, you know if you've got a disability as an individual that affects you in every possible way, but explain how some of the legislation we have doesn't take into account people with disabilities?
Celia Chartres-Aris:I mean. So there's so much. You just have to look at the news to see what's going on where we're currently need. We need to do better. One example is about send provisions in schools. We recently had the introduction of the Down syndrome bill, which is revolutionary. Previously we were being governed off legislation for individuals with Down Syndrome that didn't expect anybody to live past the 11th age of 18, which meant all care for anybody with Down syndrome stopped from the state and you weren't able to access what you needed at the age of 18. Taken, you know, a very, very long time to get that legislation changed for the fact that people with Down Syndrome can live the most incredible life well past the age of 18, but we had no legislation or support protecting those individuals. So that's a really good example of some positive change that's happened recently.
Celia Chartres-Aris:Other examples of a federal around SEN care for children and access. Individuals who acquire their disability that don't necessarily live in an acceptable home are sat waiting two years, three years, four years to get help to put in accessible bathroom or to get handrails up to their property or to get a wheelchair around so they can get out into their garden. That's not acceptable. We can't be waiting three or four years to be able to maneuver around their houses. I've spoken to people that haven't had a shower in two years and their partner is having to wash them with a flannel because they're sat on a waiting list to be able to get an accessible child that they can get into. So these are some examples of where currently we're not getting it quite right.
Celia Chartres-Aris:Another really good example is something called document M, which is around architecture and the requirements about how accessible a public building has to be, so whether they have to have a lift, accessible bathrooms, correct signage, quiet room, handrails. So we have that piece of legislation which stipulates what's needed. So these are public access buildings, so something we all have a right to access and enjoy. Document M is currently optional. You don't have to abide by that piece of legislation. So if you build a new museum in the middle of London and it has no wheelchair ramp, they're not breaking the law in any way. They're just being advised that they should be. Yeah, it's, we have a long way to go.
Angela Walker:When I had my first child and I had this massive pram to push around. That was when it struck me how inaccessible everywhere is. You couldn't even get around a shop. You couldn't get into a bank, you'd have to go oh, can somebody help me? You know, and you want to be independent, and so I can imagine for people who are in a wheelchair. They don't want to keep asking for help to get into buildings that they need to get into.
Angela Walker:Something I noticed when I had quite a bad wrist injury and my hand was out of action. I was off work for nearly a year and I had lots of surgeries on it and I lost a lot of strength and I couldn't do anything. I couldn't wash myself, I couldn't open the door. But what I noticed was when I had a very weak hand I couldn't do door handles that were round I couldn't take use plugs. You know, put my hair dryer. I couldn't plug in the plug into the socket because it was really small and a weird kind of shape. Now, having a door handle that somebody with a weak hand can use means having a door handle that everybody can use. It's no skin off the nose of somebody who hasn't got a hand problem. So it just kind of makes sense to make things that help everybody, because they help people with disabilities. But they're helping everybody, aren't they?
Celia Chartres-Aris:Exactly and kind of a mantra we all need to adopt a little bit more in our lives is accessible from the point of design. We shouldn't be waiting for the termination to happen. We shouldn't be waiting for people to not be able to enjoy the same opportunities and the same access of everybody else before we have to go back and fix it. Just do it from the point of design. Why wouldn't you want your buildings more accessible for disabled people? Why wouldn't you want that? Everybody agrees with that. Everybody agrees with inclusion and accessibility.
Celia Chartres-Aris:But one of the problems we have is that it's not the representation of disabled people at the heart of these projects and at the heart of policy leading and at the heart of these large companies. You take the FTSE 100 list of the executive. Currently nobody has declared that they are disabled in the FTSE 100 executive teams. We're not at the top, we're not in the position as implements as much as we would like to be, and that's a real shame. We have to break that down and look at where can we break down barriers to make sure that disabled people are at the heart of conversation at all times with the largest minority group in the world, but we share about 0.1% of the share of void. Those figures don't add up.
Angela Walker:And that's where you're coming in, because the work that you're doing is so influential, I mean, when you're taking part in these talks with government officials about legislation. How did you end up in that position in the first place, celia? Because that is an influential position to be in, which is amazing.
Celia Chartres-Aris:Thank you. So I spent. My background is I was always interested in law, always been very politically, I suppose inspired in, always been so engaged in the news, always been so engaged in conversation and wanting to always be a part of it. And I studied law at university and specialized in human rights and international law as well, and employment law as well, and I went straight into the legal environment after I graduated and thought right.
Celia Chartres-Aris:I'm gonna be a high-flying lawyer. This is what I'm gonna do. And about six months in I quit because the environment was so inaccessible. It just didn't work for me. It was so uninclusive and I was driving myself into the ground and I had to take a year off while spending a year in bed, kind of recover myself from the experience. That was six months in the legal industry, very unwell at that point.
Celia Chartres-Aris:And I lay there every day and I thought I've had my dreams absolutely crushed, not because I couldn't do it, not because I wasn't capable of doing it, because other people around me wouldn't let me do what I was able to do. It may be a different way of doing it, but I'm still able to do it. Things like, you know, not being given time off go to doctor's appointments. I have a blood infusion at four o'clock every day and I cannot miss it. No, you are not leaving that desk. What happens if I come back and do it an hour afterwards? What's the difference from doing it at four o'clock, doing it at seven o'clock? No, sorry, that's not how we work.
Celia Chartres-Aris:And I lay there and I thought the law needs to change and no longer can we accept this argument of well, look how long it took for women to get the vote. Look how long it took for us to abolish slavery. Have we not learned from the mistakes of our past that people are suffering, people are dying, people are living at a lower quality of life in a way which is entirely presentable. People are losing their lives, both through mental health and physical health, and the combination of the both, because as a society, we are not acting fast enough and we are not prioritising. And that is what drives me.
Angela Walker:Yeah, I wanted to talk to you about the mental health side of things, because I can just feel your frustration resonating through. You're such a fighter, celia. I mean you're fighting against this really debilitating condition, but you're also fighting against these restrictions in society that are just so unfair, and I think that's really hard to deal with when you've got the talent and the intellect that you have, and it's so great to see you just channeling that in to doing good and to make positive change. What are you working on at the moment with regards to legislation and so on? I just want to say thank you as well.
Celia Chartres-Aris:I said very lovely comments and I always feel a bit like I never know how to take off of it, so that's very lovely, thank you.
Celia Chartres-Aris:So my biggest project that I'm working on at the moment is called Access to Funding, and we've actually had our paper published in four which is really exciting which is looking at the inequalities in the investment space.
Celia Chartres-Aris:So, statistically, disabled people are much more likely to set up their own businesses and we over-index on creativity and the ability to think outside the box and resilience and determination.
Celia Chartres-Aris:So there is a whole host of disabled founders and entrepreneurs out there, and what we did was we noticed the inequalities that are happening in the venture capital space. So we launched this very large data collection projects, interviewing and collecting data from the most incredible people with the most incredible ideas, and some of the statistics that we've drawn out are really shocking, and our kind of figurehead statistic is that when we ask disabled entrepreneurs, do you feel like you are treated equally to other entrepreneurs? 98% of them said no. So what we are doing is looking at the investment and the entrepreneurial space and the business space in general, working with government and also working over in America and working directly with investment firms and disabled founders to break down that inequality that's currently happening. We are blocking people out from businesses. Not only are we blocking them out from the employment space because that inaccessible in itself, but now we're blocking people from setting up their businesses. So that's something we're working on at the moment.
Angela Walker:Are you talking about someone who's starting up, who can't get a business loan, for example? Is that the kind of thing you're talking about? Yes, so?
Celia Chartres-Aris:we're talking about the whole picture and mainly focusing on investments. So when you go to investors and you say I've got this amazing idea and I need X amount of funding venture capital firms, people are being discriminated against from the offset not on their ideas, because they're not good enough, not because they haven't got the mechanisms in place to do what they wanna do purely based on the fact that they're disabled. Discrimination is active everywhere against disabled people and we're not talking about it enough as a society.
Angela Walker:So how can that be changed? How can you convince an investor to invest in you, regardless of your disability? I mean, are you saying that there should be some kind of like legislation to stop that from happening? Well, from the offset.
Celia Chartres-Aris:things like if you go on the govuk website and you wanna download the form to apply for a business grant, it's not available in the incredible formats.
Celia Chartres-Aris:If you go to an investment firm and they say submit your pitch, and it's an inaccessible website and it's an inaccessible email address to get to them, what are you supposed to do as a disabled entrepreneur? So what we've designed is something called an access maturity model and we've trialled it across various investment companies with great success about how organizations can look at their internal policies and how government can look at their policies around accessibility and inclusion. Everybody has the appetite to be more acceptable and be more inclusive, but there is a lack of information and a lack of awareness out there as to how large the problems are, so people don't think about it. It's not on people's radar because people can't even access to start the conversation. So we're working kind of across all sectors and all industry, including the charitable sector, about how can we promote not only accessibility in the employment space but also accessibility for disabled founders and disabled entrepreneurs. It's really exciting and it's been picked up very heavily, which is a really good sign, and we are moving forward.
Angela Walker:I'm so excited to see where that goes, because I'm sure that we have people who don't have disabilities designing things for the people with disabilities and that doesn't make sense. So to see people with disabilities having access to running their own businesses, designing their own products, doing their own thing, making products for themselves, I think is great and any change that comes about it's got to be positive for everybody. It's not giving more rights to people with disabilities. It's not taking rights away from people who don't have disabilities. Is it.
Celia Chartres-Aris:This is the thing is I constantly hear what's the burden going to be on when we need to do this. Accessibility and the right to be able to enjoy what everybody else enjoys and the opportunities everybody else has. It's just that it's a right, it's not a privilege. We're not doing people a favour by allowing them to access a museum, or it's not even. It's not allowing. It's ensuring that people have the same rights as one another. We live in the most, I think, 14th developed country in the world, but I'm not able to go into a music festival because I carry a feeling with you. How does that work?
Angela Walker:Tell me about that. You tried to go into a festival and you weren't allowed because of your disability.
Celia Chartres-Aris:Because of new legislations around carrying liquids, because of terrorism threats. You go to any large means of transport. Even if you try and go to a club or you try and go to theatre, they will say water bottle in the bin please. And you say, yeah, completely understand, I'll buy one inside. I'm carrying two and a half litres of fluid on my bag. That's very clearly connected to me.
Celia Chartres-Aris:I always this is not me being high in mind, just saying people should just presume I always carry my paperwork. I even carry this little QR code that people can scan that takes you directly to a charity's website to explain very succinctly what's inside my bag. I carry a letter from my doctor that says, no, you cannot open this bag. No, you cannot search this bag, but this is signed by five doctors from a very good hospital that this is what the content is and she has complete autonomy over that. But you try bringing two and a half litres into a venue where the security is not accessibility and inclusion trained and I have been taken away multiple times despite producing all the evidence that I require. I recently went to visit one of my friends in Ireland and I got strip searched at the airport strip searched because I was hooked on my feeding tube, Despite having all my paperwork, having, you know, letters from the pharmacy, letters from my consultant, letters from the company that provides the feed, and they thought it necessary to strip search me.
Angela Walker:I'm so sorry you went through that. What I'm horrified. What happened after that? When they strip searched you and they could see that your feeding tube was connected to you, what was their reaction?
Celia Chartres-Aris:The same as it was when they started it, and I I suppose I try to use them as educational moments rather than feeling anger. Of course I feel anger, but I just I try to keep that to myself and say right, this is the moment to educate somebody so that the person that comes after me that's similar to me doesn't have to go through this experience. So I was my last trip where I was strip searched. It's happened more than once, unfortunately. I sat down with the lady that per formed the search and there were a couple of other people in the room and I said you know, this is what it is, this is what it does.
Celia Chartres-Aris:I want to make you aware that this is a violation of the Equality Act. This is against the law. For you to do this, you have no reasonable grounds, and that's what you need is. You need a reasonable assumption that I'm up to no good and I have not given you anything to prove to the otherwise. And so I use it as an educational moment to say you know, please pass this on to the relevant individual, but I will be following this up with an email, as this is a violation of the Equality Act. This is against your right to strip that me down. You know, I'm quite happy to take my shirt off and reveal the tube so that you can see where it's connected. But that level of lack of respect is unacceptable and their draws align. I completely acknowledge that extra steps may have to be taken. I completely acknowledge that, but if it's all about the safety of other passengers, but that level of disrespect is very hurtful, yeah.
Angela Walker:So afterwards you complained and wrote an email, and then what came of that? How far did you take it? I never got a reply. Gosh, I don't know what to say to that. I'm speechless actually, because you are so open and you would be willing to sort of show them where the tube goes into your chest. I can't understand why they would feel the need to take that further, and I'm so sorry that that's happened to you.
Celia Chartres-Aris:It's I mean it's, but it's even online. You know that post I put up recently saying it's feeding people when, if we can, nobody knows about it. It you know so many hundreds of people commented on it saying you know, I didn't know, and this is amazing. Thank you for waking up, aware. But there was still those idiots who commented going why have I got to give you special compensation? If you're in a bar and you're not buying a drink, you're taking up space of someone that is gonna buy a drink. Yeah, fair play to the bar owner who asked me to leave. You know, if a parent came into a pub with a child and the pub the parent was having a pint, would you ask that child to leave? I'm not comparing myself to a child, but I'm saying where have we reached the point in society where now I can't even go into a bar and stand with my friends? You're not supposed to have a social life. I get called a freak all the time. All the time, it's people's favorite word to call me for some reason.
Angela Walker:Yeah, I'm stunned. I'm stunned, but I would have to say that you just take it all on the chin and you're using that negativity to turn yourself into a power of force for good, and that is amazing. Now you've also been on the global diversity leaders list, because I think you're just fueled by this horrible stuff that happens to you and you're such a determined woman. Tell me about the global diversity leaders list and some of the awards that you've won, celia.
Celia Chartres-Aris:So I feel incredibly honored to have every mention on any list.
Angela Walker:I slightly feel, and you're so humble, you're so humble, own it.
Celia Chartres-Aris:My "syndrome kicks in all the time. I think like, oh, I think they've already got it wrong somewhere. Anyway, so the global diversity leaders list is a compilation of 100 leaders I'm going to use that word tentatively, because I definitely don't describe myself as a leader of individuals from around the world, whether they're HR executives, whether they're power and diversity, in whatever area it may be, and amplifying the voices of people who often don't have their voices listened to. So that's what those awards are. So it's very exciting and very humbled and very honored to have been featured alongside some incredible individual. You see Forbes 4.30 Under 30 on the list next to you and you think why am I here?
Angela Walker:You're so humble. You're so humble and, on a personal note, you've had some wonderful news. You've just got married, haven't you? I did?
Celia Chartres-Aris:I did. It was the most magical day and I feel very lucky, Very privileged, very lucky oh bless you.
Angela Walker:Well, thank you so much for talking to us. I feel really emotional in lots of ways. I feel really inspired by you and all the things that you're fighting for and fighting against your disability and fighting for rights for people and I feel really angry, actually, on your behalf. Thank you for everything that you're doing for people with disabilities. I just think you are amazing and I want to talk to you again because I just want to keep up to date with all these things that you're fighting for.
Celia Chartres-Aris:Thank you so much for having me on and thank you for being a vessel for people who don't often have their voices heard, to be heard, and it's so important that we cover that kind of spectrum of diversity inclusion. So thank you for having me on and thank you for the work that you do.
Angela Walker:Thank you, Celia. I'm Angela Walker and I've been in conversation with disability advocate Celia Chartres-Arris. I hope you've enjoyed the show. For more information, check out my website, angelawalkareportscom, and do get in touch if you know someone who's inspirational or if there's a story you think is under-reported. Until next time, take care.