#22 An insight to Spinal Muscular Atrophy

Ross Hovey has Spinal Muscular Atrophy type 2 ( SMA ), although under today's criteria he may have been diagnosed with Spinal Muscular Atrophy type 3.

August was Spinal Muscular Atrophy awareness month, but we believe education needs to last longer than a month.

The NHS state on their website that intelligence is not impacted by having Spinal Muscular Atrophy. Listening to this podcast you will not see Ross in a wheelchair and will not see the lack of movement. Talking to Ross before the recording we spoke about our careers, he asked me a lot about my story and we talked about football. It won't take anyone a long time in Ross's company to understand that he is not only a intelligent man but also a very social one too.

We discuss how Spinal Muscular Atrophy impacted on Ross's education, social life and his career. He tells us what he would of done differently had he had his time again and he shares three tips for others either with Spinal Muscular Atrophy.

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:45

Welcome to the next episode of the All 4 Inclusion Podcast we are back after a little break with a slight change in scheduling. Episodes will now start to to come out every two weeks on a Wednesday instead of coming out weekly. And this will allow us to ensure that the quality of editing of the podcast is a lot better. Now I am joined this week by my guest is Ross Hovey. Now with Ross, I could talk about so many things, I could talk about his role as an accessibility manager, being co-founder of changing places international, supporting other organizations with either ambassadorial roles and consultancy roles and and also working his way around the country's football grounds as a supporter of Liverpool. But we're actually gonna focus on Spinal Muscular Atrophy or SMA. The reason we are doing that is we have just come out of SMA awareness month and people that know me well will know that I think when we have awareness months, it's important to continue those learning points throughout the year. Ross, thank you very much for joining me.

Ross Hovey: 2:03

No problem. Nice to be here

Scott Whitney: 2:05

When we spoke off air. I've mentioned before I, don't personally know a lot about Spinal Muscular Atrophy. And what I want to do is, learn from you whilst recording this podcast. But I looked at the NHS website regarding this and. There was one sentence that really stood out to me and that sentence was along the lines of Spinal Muscular Atrophy does not impact in any way intelligence. Now, do you find that some people. Try to find a comparison between intelligence and SMA.

Ross Hovey: 2:48

That's an interesting question. So I think there's, maybe two, two answers to that. I think when you are, when you have a disability that's clearly visible and a lot of people of SMA especially type one and two are wheelchair users. People sometimes assume that because you're in a wheelchair you also have like cognitive or learning difficulties. So I think some people who are unaware of the condition think that it affects everything. And the NHS website is right. There is no scientific evidence that says it affects intelligence. I think some people are more intelligent than others. That's just the human race. Some people apply themselves. I dunno how intelligence is formed in the brain as we grow. But obviously education and learning helps you become more intelligent when I was younger. I think I was about nine. So throughout my childhood, I went to the Hammersmith hospital in London. That's where the SMA sort of center of excellence clinic was. And that's now in great Ormond street hospital in, London. But when I was about nine or 10, they did like a study where they. I think they selected quite ENT type children, like white blonde hair blue eye, male, and girls of SMA of certain ages and then non SMA white area girls and boys. And they did we did IQ tests and. I've never found anything that says a hundred percent scientifically, but from my recollection, there was there is, I think some common beliefs and views that people with SMA do tend to have a higher form of intelligence than their non SMA. Yeah. Yeah, I dunno if that answers your question. Yeah no, it does. I, think there's the stereotypes that go around people have, I dunno if the right word is judgment or whether it's biases that, that they have innate within them. And it was, for me, it was such a strong sentence to, to have on its own. It, it listed a, number of symptoms and then. Below that I that was really powerful. And if anyone looks at it straight away, that's, the that's the main thing that would, stick out. So obviously, like you said there's, four, is it four different types or of SMA. There's three that are commonly recognized. And then there's the, there's a book I might even have read recently as a fifth, but again, although I have the condition and I'm interested in it I'm not a profound expert. And obviously, my knowledge of it is more about the most common types, the sort of the SMA one, the twos and the threes. But yes, there, there are four that I think are listed on many websites. They're all listed under spinal muscular atrophy, but some of them have like names of the, physician or the, neurologist who identified the disease. If you actually Google it, there's a German. I think for, one of them it's called it's particular name, but the, generic, broad diagnosis description is spinal scratchy and then the four types.

Scott Whitney: 6:20

You are in a wheelchair now. Was you in a, have you always been in a wheelchair?

Ross Hovey: 6:26

No. So this is quite a bone of contention with some of my SMA peers. So if I was born, let's say I was born five or six years ago. I lived exactly the same life as I'm going to that. I have lived now moving forward. I would possibly be classified as SMA type three. In, new sort of like findings and research and diagnosis. But I'm dithering on your question, genetically. And like from a biopsy I was diagnosed with SMA type two, but unlike some people with SMA type two, who've never walked or weight beared up until the age of 17. I could weight bear with crutches. And up until the age of around 14 or 15, I could walk. Fairly short distances independently. I had the odd fall. And then as I started to get towards 15, 16, I used to walk holding onto somebody like linked, like what you call. I used to call it linking in put my arm. To link. And maybe how someone in the visual impairment walks with a, with an, a with a per another person, or I'd if I was walking with my parents, I'd maybe out their hands, because it was more natural to do that with your family members. Yeah, I did, I wasn't in a wheelchair until 17 and actually what transitioned me full time into a wheelchair was I had scoliosis surgery just after my 17th birthday. And I, went into hospital walking and I came out possible in a wheelchair.

Scott Whitney: 8:05

How, was school life for you

Ross Hovey: 8:08

yeah, school life was to be honest was pretty cool. So I know I don't we all have, as our memories only go back so far and 43 my, my, memories of my, childhood are not as vivid as they would've been 10 years ago, but When I was diagnosed at two. And then obviously you you start school at four or five, depending on when your birthday is. I'm one of the younger ones of an academic year. Initially I was put into what would be called now, a send school, a special educational needs school. And my parents had to fight really hard to get me into mainstream school, which links exactly back to your first question that back then, I was disabled and I was gonna have limited capabilities. So they thought that a special S educational needs environment was best for me. Clearly. It wasn't gonna be right for me. And my parents thought to get me into mainstream school junior school, infant school. I don't really remember my disability ever being. An issue. I went on all the school trips. I did all the things I played at lunchtime with my mate's football and on my knees and goal. I got in trouble, like any other kid at school, and then I went to secondary school and I think at that point in life teenagers we're, all a bit we could be idiots and we can say things we shouldn't say we could pick on people's differences. Yeah, secondary school. There was the odd the odd name called in the odd challenge and things like school trips became a bit more I dunno, a bit more physical. So they, weren't necessarily the right thing for me, but again going through sure. Had a I had a learning support system, I think, is that what they call it now on that, but back then now they would call it a TA or a teacher assistant. So I had a full time. Person at school with me, which helped me get between lessons and helped me get this out. But once I sat up in my class, they actually went and then supported the people that were more intellectually challenged within, within, within a class. So I didn't really have any, having the physical help I needed. I didn't have like help at school to. To do, anything. And, to be honest, my peer network my friends used to love the fact that I get to leave a lesson than five minutes early to get to the next one. They'd always volunteer to come with me. You won, take him to his next lesson. And when you get to 15, you may want a quick fag down the back alleyway between lessons. So having the disability kick gave you some advantages. So no, no school no, no, different. Yeah, education wise. No, did my GCSE did my a levels had the typical things that people have, like 25% extra time in my exams and a computer to type rather. Than rather than writing it all out. Yeah.

Scott Whitney: 11:01

When you transitioned into into your wheel wheelchair did, life change for you dramatically or, was it was you still continuing down that, that same path

Ross Hovey: 11:14

really? Yeah, it was a weird transition for me. When, I had my spinal surgery, when I was 17, They don't know why or what, but they I basically had, I'm trying to think of the, medical term for it. Not sepsis is when you about perforation of the bowel. No. So they. They, Nick, they don't, they nicked my bowel or whether it was a lack of oxygen that caused the perforation. So for a year I had a temporary colostomy between the age of 17 and I had it reversed just before my 18th birthday. So when, and then, because of that, I was in hospital for what should have been a six week back operation. I ended up in hospital for about five and a half months. So when I returned to school, Back in 1996, I don't think colostomy bags were like a, known topic. The big thing. And in fact, only about three of my friends knew that I'd had it. Cause I was mortified by it. I was embarrassed. It was horrible. It wasn't done planned, so it wasn't a perfect fit. So going into a wheelchair, I was very, I wouldn't say I lacked confidence, but I was very. Cautious about being back at school and hiding in this big kind of thing. So my friends who knew about it were quite protective of me. So like the bags sometimes used to make random noises and my friends would go, oh yeah, who's farted like that. That was you a point that one of their mates kind of thing. So to help me hide it, but yeah, and I was very weak, so I kind. Yeah. I went from traveling to school myself, like in the GCSE year, I stopped using the taxi company that used to gimme a free taxi and used to go on my scooter with my friend, like my what do you call mobility, scooter with my friends to school, but I had to get a taxi and things again. And then six form parties. I was a bit reluctant to go in because of, the bag. All that kind of stuff. So yeah, that, that transition was really weird for me. And I found it difficult at the time and I was just so relieved. Not that there's anything wrong with having a, Stoma bag, but for me personally to have that reversed 18. Kind of then allowed me to deal with that transition to being a full-time wheelchair user better. That was my only focus for that first year. Yeah.

Scott Whitney: 13:41

We're talking about different generations as, as well. So there's more education around like stoma bags and things like that now. So obviously back then, I can imagine. You're dealing with two things and and obviously one is gonna be around for, life. And, the other one is something that, that can be reversed. So I can see that yeah,

Ross Hovey: 14:12

the other transition was I went from going into hospital to being like pretty Self sufficient in terms of getting outta bed, going for a shower, going to the toilet. I needed things like help putting, my trousers up maybe, or like putting my shoes on and then to go from not being able to do all of that, to having your mum do all your showering and a random carer that was new. And then because of the back surgery and the house, not being set up, how we wanted it to I had to have bed baths for. I think three months and anyone who knows me knows that my whole day revolves around a shower. I didn't feel fresh going to school. I didn't feel cool about life. Getting the house where there was lots of things going on there. But I didn't let it go back to education questions somehow. I didn't really get the impact me and, still focused on my my, a levels and managed to get really good.

Scott Whitney: 15:10

That's a real credit because obviously it shows the, drive the motivation just to get on with things then. So when, did you start getting into the position when you started helping other people, whether it be work or ambassadorial roles.

Ross Hovey: 15:28

That came a lot later in, in life. So obviously I, went to uni and I'll some disabled people who are watching this or who know me or so they might say that it's able istic or that there's ableist tones. I very much. Don't it's weird. I don't get offended when people say I don't see your disability. And I, don't necessarily think about being disabled myself and that's not, cause I don't wanna accept it. It's just it's, just the least amount of things to worry about. Yeah. So when I went to uni when I got a job, I. Socialize with people with disabilities, that if I went in a room and it was for people in wheelchairs, I was like, oh my God, get me out of here. This is like really awkward. I don't wanna be in. Yeah, that, that wasn't them. It was just my take. And I think what I thought was maybe because I went to main street school maybe because my friend's sense of humor is very real that, they never held back on jokes and things about, I look at all those people in a wheelchair, the variety bus turned up now, and I would be thinking to myself in a room, oh my God. Like somebody looking in is gonna think we're all gonna get on the variety bus. And that was my own, all, these were all my own barriers and mindsets. What happened was I've got a career, started doing my job again, just really wanted to get on, get through the organization. And then I got taught. My early thirties and I recognized that this was a problem that I had around other disabilities. So without giving too much about way where I work because of various reasons it's not. So what here talk about today. We have an internal course called the personal development program. For disabled colleagues. And it's more for colleagues who are struggling to manage their condition alongside their job, or maybe their lacking confidence, or they've experienced something bad at work. I didn't have that, but I went on there to spend four days with other people with disabilities so I could understand the things that they were experiencing. And that, was my first mindset into this different world of, people with disabilities. So then. Having been where I'd worked at that point for now, like maybe 13, 14 years and becoming fairly astute about how you get on in life in terms of driving disability. Carers access to work, independent, living all that jazz. I thought, how can I help other people with all of this? How can I help my organization that I work for be better, so long and short? I, guess the perfect storm a team was set up at work to look at disability and I applied for a job in that team. And then that kind of started my awareness of challenges, awareness to make a difference. And as I grew confident in that role as my network grew I just wanted to, yeah. You realized that in an ideal world in life, I would've been, I don't know. I'd have been Robert Firmino I'd have been a footballer, but you have the manager. I might have been a chef might have been like a Gordon Ramsey or realistically I might have been somebody that was really cool at creating marketing campaigns. I clearly worked out I'm not very cool at that. And my skill set is people and, being disabled, I guess I've got a lot of USPS and sometimes you've gotta work out, not necessarily what you're like, but what you're good at. And yeah, I guess that's how I've got into, to help in other people, other organizations. And I guess, yeah, people see me through relationships that I've built as a subject matter expert. Various things. So some of the work that you talked about earlier, like the consultancy stuff I do a bit of work with a large airport in the UK. And the reason I got asked to help them was through a relationship. I built with somebody worked at Virgin Atlantic previously, who said when this panel was being set up, I think Ross would be a good person because he travels around the world. He's a wheelchair user. He works in the corporate world. He understands some of this stuff. I recommend we get him on board.

Scott Whitney: 19:53

I think it's important when you have when people are looking to set up panels that you, have people with lived experience on them. I'm not saying that the panel needs to be solely people we've lived experience but there needs to be a decent. Share and I'm not again, not just wheelchair users, so it goes across different disabilities. Because without that you are providing what you think people want, not what people actually need. That's, all very interesting now with SMA itself. Do you feel that aside from the fact that you're not Liverpool's number nine, do you feel that it's it's held you back in any way?

Ross Hovey: 20:42

Oh I wrote a blog about this recently for SMA news today in the USA. I'm quite lucky. I'm lucky might be the wrong word. I've worked hard to get good qualifications to get a good job to live independently on my own home, all those, things. So it hasn't held me back in that way, but I wish I knew what I knew now, and I wish I was as confident and capable as I am. Like 10, 15 years ago. I didn't live independently until my early thirties and I'm thinking, oh, when I was younger and 20, I'd been so much more fun living independently at that age than by the time you get to 30 and you're all partied out and thinking, ah I've got like a career, I've got responsibilities. And yeah. As I've openly mentioned, and I don't have a significant relationship and maybe that part of my SMA and the way I see myself or perceive life as held me back in some of those ways. So I don't, I think SMA I'm not sure SMA has held me back. I think it's our own personal barriers and perceptions that, hold us back. I think like tomorrow, for example I don't try and bring Liverpool in to everything, but obviously we are, we're playing tomorrow. I've got a ticket. I crashed my car earlier this year. I've just got it back. It's got a few teething problems, but it's, drivable. I drove last week to Liverpool. I couldn't drive there and back. And tomorrow I should be thinking about driving and my SMA has not, got to the point where I can't drive. My brain's telling me, oh God, you haven't driven a lot recently. It's an early kickoff and that's all in my mind. That's not my SMA. So I think to answer your question at times I've let things coming back because I've perceived other people's thoughts. And I'm second guessed situation when I didn't need to.

Scott Whitney: 22:52

For me I've, lived 37 years as someone who's able bodied and two years or two and a bit years as someone with disability So I always have a different view on things because I guess what I wanted to do well, I think for me, first of all, I had went before I had my diagnosis. I kept everything to myself. Initially. Didn't want too many people knowing, not because of not because of embarrassment or anything like that, but it was more a case of, I didn't. People suggesting things and saying things that I've already cycled through my mind, lots and lots of times, because I've had so much time to overthink things. And when I knew it was. Confirmed and diagnosed and real I've been very, open about it straight away, but I know. I've got some advantages in the fact that I already had a job. So I'm still continuing my job and I didn't have to find a job with a disability because for some people that can be hard, it's getting the opportunity to, prove yourself. Have you have yourself, you've got a, job at a young age, but have you found or spoken to many people with SMA who've struggled to find employment?

Ross Hovey: 24:28

So again I've got, I'm trying to think of how many friends I've got with SMA that I speak to regularly. And I, it's probably somewhere between about 20 that I speak to regularly and. A variety of them are employed. Full-time part-time unemployed. Choose not to work. Have maybe had some difficulties getting work. I'd say more in the wider community that I follow on the internet, like through social media, in various Facebook groups, there is a, there is people that, that, have difficulties getting jobs, not just people with SMA, but people with disabilities. Or generally we are here to talk about SMA today. I'd go back to what there's two things for some people, for whatever reason, they feel it's easier to not work and that's their choice. You know that I, personally don't necessarily side with that, but each, their that's their, choice. I think that there's people that have found it difficult to get jobs. And I, think that's the combination of things. One there's the, maybe their mindset around getting a carer going to work. Will they understand that I can't be there at certain times? Is there gonna be the toilet facilities that I need? What about all these medical appointments worth? My mobility vehicle breaks down and yeah. Do you know what, like trotters independent traders might not be able to deal with that, but think about where you are applying for jobs. Think about the type of organizations out there that. Inclusive there are lots of disabilities. There are people without disabilities who have time off work through caring commitments, through child commitments. There are people that cause organization problems because they have personal behavior problems that are not related to disability. It could be gambling could be alcoholism, like organizations are used to dealing with a diverse range of people and for people with SMA. there is lots of great support in the UK. I think we're in the UK. We're really lucky with the the access to work scheme will help you get a job. If you want if you want a job, they will help you with the, cost the, support that you need to do that for a large employer or a certain way. So I think answering your question, there are some people who find it difficult. A lot of people I speak to are. Various types of jobs.

Scott Whitney: 27:12

So really, I guess the kind of biggest tip from that is choose where you're looking and who you're looking to work for. Just as much as the job itself.

Ross Hovey: 27:26

Yeah, and I think there's two parts that make, depending on where you live it's not easy for someone with SMA or any disability to just upsticks and move. You've got your family network, your care network, your hospitals that are nearby. So it brings me back. I'm not saying the corporate world is the best world to work in. Large corporates have large. Locations spot dotted throughout the country, remote working. They've got more opportunities to support you. And again, it goes back to that bit about what when I joined, where I worked 21 years ago, did I think I'd be doing what I did now? Did I actually join a job that I wanted to do for the rest of my career? No. Did I go and actively search out employers that were gonna be. Supportive of me and my disability. And then once I knew that I was in the door and I'd prove myself that I would get the support I needed. And to be honest, I had the support pretty early on because of. How I went through the process, how I explained myself, how I worked hard, how I recognized that when I did have some time off that I, then I wouldn't shy away from the fact that no one asked me to work extra, but in my mindset, I was like hang on a minute. They've been really flexible with me here. I need to be flexible back. And that served me well throughout and, when I left uni, I was presented with a couple of job opportunities to take and. The job that I could have taken was for a pretty decent size company, eight minutes down the road, like in the car could have come home to go to the toilet at lunchtime. Cause I was pretty independent back then. My friend's dad was the chief executive officer. So where else would you wanna go when you know your best mate's dad pretty much runs the company. Yeah. But the, reason why I ended up choosing where I work, which people could look up on LinkedIn. Is because they were so positive about my disability from the moment I applied to them. And despite the fact that there's been the odd blip in, in my career and that's not been a systemic organization. That's been individuals who lack understanding, or haven't dealt with a situation particularly well 21 years later I'm, still supported. So my advice to people, especially young people of SMA who are like leaving school, Doing apprenticeships leaving university is go on the disability confident website. Look at companies that are doing that are leaders go to the BDFs website. Look at like organizations that are performing well, go on LinkedIn, just type in like disability in the workplace. You'll soon. See the large players that are doing well and, yeah, don't get me wrong. The world is. A better road. There will be moments in your life and career where it doesn't go out. You wanted it to go, but I don't think these are systemic problems. They're generally down to an individual's.

Scott Whitney: 30:32

And as we get to the point where we're, thinking about wrapping up, what, three learning points would you give to. People like myself who dunno a lot about SMA

Ross Hovey: 30:44

oh three, the point I, so I guess it's with any disability, if so three, three things. So one if you work with somebody in your particular life or you friend with somebody, or you meet somebody that is in your network and you are generally interested just, have a quick Google their condition, just so you get. A little bit of an understanding. I don't think there's anything wrong with that. Likewise, you might meet somebody who's from a different religion than, you. In fact, I had a work call a few weeks ago where a colleague of mine said he was going away to a certain religious camp. And I, just Googled it to see what it was, cuz I didn't wanna on my next conversation with him. I didn't wanna say anything that might upset him or I didn't want to look like I wanted to understand a bit more about. So I think one is like going have a quick Google, the second one's gonna be controversial. Cuz a lot of the listeners will say no, don't ask somebody. But my view is that asking questions is a sign of en dearment is a sign of interest and, a sign that you don't lack ignorance. So I think go to somebody or mate, why are you in a wheelchair? That clearly is rude. Like it's not the right way, but saying to somebody like, oh you've got notice you're in a wheelchair. Like I heard you had Spinal muscular atrophy fee. I've read a little bit about it, but actually I'm really interested to understand a bit more about what sort of challenges you face in life, what sort of difficulties you face? Cause you know I, don't appreciate this and I'd just really like to know him why I don't find that offensive. I think that's that's how we, develop awareness amongst us about anything. My third tip is to not assume, and I think so don't assume from any disability A certain type of disability means a certain thing. My friend has got SMA. He's quite well seen on LinkedIn. He has ability. We have very similar ages. We have the same diagnosis. He can do things that I can't do. And I can do things that he can't do to don't assume because you've met somebody with SMA who doesn't drive that the rest of the people with SMA don't drive. Or if you meet somebody with SMA who doesn't. Not everybody at SMA doesn't not work equally, not all of us work, so just don't make assumptions.

Scott Whitney: 33:13

I think that links back to your second point. And I'm, the same. I like people asking questions to me because I, I think if something's said with the right intent and that's the key is the right intent. I'm happy to, have a conversation with, anyone. And that then takes away the assumptions. So people see me in my wheelchair as a manual wheelchair, and if I'm struggling going uphill, they will naturally think, oh, should I take over and push you when actually I'm, happy most of the time to still push myself. Because if every time someone pushes me up a. And then I'm on my own and I'm faced with a hill that will be quite daunting, but if I'm doing it myself, 95, 90 9% of the time, and I'm on my own, it's just what happens. And if I go slow I'm still going in the right direction. And that's what matters.

Ross Hovey: 34:12

Yeah. I, think it's a really interesting one. So I'm lucky instead of travel with the world and sometimes in hotels where they're employing what we mainly call migrant workers on low wage from different cultures, even though I'm in my electric wheelchair, that goes really fast. I approach a ramp. They feel like the need to give me a hand. I'm not angry with them. They just haven't seen a lot of electric wheelchairs in their life. Like they don't get it. When I used to work in London, I used taxis all the time. The amount of times taxi you drive might has said to me, like when you put the rabbits out, oh, you've done that before mate. Now I see a load of people on social media going that's a realistic, it's really offensive. And I go, is it offensive? Is it that they dunno what to say? So they don't wanna say nothing. They just haven't thought they haven't thought about the impact of it, but if I went to him, oh, that's really cheeky for you to say that. Or oh, shut. Why are you saying that I'll get a different taxi, one that alienates taxi drivers for then maybe wanting to work and pick up other disabled people. It stresses me out for no reason. And actually then if I just laugh and make a joke, another I, things I generally say is, yeah, consider I just nicked it an hour ago. I'm doing pretty well. Aren't I, just show them, I've got a sense of humor generally. Then we get in the cab and we get to the first corner and they'll go, oh, so you go into, so andSo place. Are you working the city? What do you think about Brexit? Not a conversation. You have a chat or they'll go so you do you like football mate? And you're like, yeah, I like. Who do you support? And I like you support first. And, then before it, like you've made a connection with somebody. In fact, when I used to travel regularly into London and used taxis, before I used the tube, I became friends who were like three or four drivers. Who's their first thing was like, you've done that before me. But then to the point where they were like, oh, you do this journey regularly. Here's my number. If you text me when you're in on the, on your way in. But if I'm, I will try and make sure I'm in that pickup zones, when the job goes out, On the radio or the app I'll, pick it up cause I know where you're going and that, that helped me out. So I just think this not alienate people. I get it. I get it. Some people get offended, but just, think about the situation, the bigger picture. Yeah. And

Scott Whitney: 36:36

that just reminds me, I've got a taxi driver that I'm friends with called Frank. He picked me up he didn't say anything like about, oh, you've done that before going up the ramp or anything. But the first thing he did was ask almost why am I in a wheelchair and different things like that. And. He picked me up from, somewhere and took me back home. And he he he, had a card machine, but just the signal. Wasn't great. So it wasn't working. So just did a bank transfer to him and the, journey was, so much smoother. Because he had a real appreciation of people in wheelchairs actually. And B we had that natural conversation more about football than anything. He was a man city on, Liverpool and and he, works nine till five. He doesn't work Monday to Friday nine till five doesn't work aside from that. Actually a bit earlier than nine to five, she does school runs. When when I went to the rugby, it was an evening match. Went to watch sale sharks play and. The I wanted to get picked up at 11 o'clock. So generally what I would do is message Frank and say, do you know anyone who can pick me up at this time? And he said, look, it's there's a lot of people off at the moment. I'll tell you what. I'll pick you up. And it was about half past 11 at night he went, he would go out his way and sometimes when he is taking me to hospital appointments and I've not got any idea of what time I'm coming home, he just says I will keep my phone on, let me know. And he'll just make sure I get home safe. But you build that rapport. It doesn't just come naturally. And, there's got to be a start to it.

Ross Hovey: 38:16

Yeah. Yeah. Most of my interactions in life have been, because we might have started a conversation about who am I? Am I disability with somebody? So yeah I just, yeah I, get it. I get it frustrate some people, but just maybe just take a pause to just see how you can deal with that interaction differently. It might actually turn out to be one of the best interactions of. Yeah. Yeah,

Scott Whitney: 38:39

I think that's I think that's a great point to leave us on really, because we can think of. How any friendship starts, how any relationship starts? There is a starting point. It's not necessarily going to be how's. The weather is going to be something that's gonna click and and, you can react to any interaction the way you want to. Yeah. And if you choose to do it in a positive manner, What's gonna come out of the other end. Exactly. So thank you all very much for listening. We will be back now in two weeks, so it will be fortnightly that these episodes come out. I hope you've enjoyed. This episode, I have, I've learned a lot about Ross and about SMA through the podcast and our conversations. Like I said, thank you very much for listening. And finally, thank you very, much. Ross

Ross Hovey: 39:40

Cheers thanks for inviting me.