蜜芽传媒

jingle

蜜芽传媒 Sounds: music, radio, podcasts.

kate

We鈥檙e talking about power this podcast and all the great stuff us disabled folk are up to. Being all powerful and changing the world and stuff.

jingle

Ouch.

kate

This month alone has seen the Disabled Power List 100 released. Lots of Ouch guests made it, including Lost Voice Guy, Rosie Jones and Eugene Grant. Well done if you made it. And congratulations to you, Simon. Oh wait, you weren鈥檛 on it, were you?

simon

Six years running and I鈥檝e dropped off. This time last year I was鈥�

kate

What did you do wrong?

simon

I don鈥檛 know.

kate

You just got less powerful.

simon

Were you on it this year, Kate?

kate

I鈥檓 pretty sure I was鈥�

simon

Was not.

kate

鈥�n鈥檛.

simon

It was a kind of funny old list. However there鈥檚 the 蜜芽传媒鈥檚 100 Women list that has also been released.

kate

Oh, am I on that one?

simon

Sadly not. This is a global celebration of the best and brightest women. Well done to fashionista and fellow little person, Sinead Burke, for making the cut. But she didn鈥檛 actually make it to the Disability Power List.

kate

So, Sinead was on the Women?

simon

Yeah.

kate

So, she鈥檚 one of the most influential women in the world yet not one of the most powerful disabled people in the UK?

simon

Used to be curated, nomination and curation; they鈥檝e moved just to nomination. And then a panel decides. So, listener could you do what you need to do?

kate

For your favourite Ouch podcast presenters.

simon

翱谤鈥�

kate

Or us.

simon

鈥�Kate, we have to鈥�

kate

Nominate each other.

simon

You鈥檙e so powerful.

kate

I think you鈥檙e so powerful. I feel like a lot of the people that鈥檚 on it generally spend a lot of time on Twitter talking about things.

simon

You鈥檙e so middle aged. Have you got to be a moany twitterer?

kate

Well, I do wonder.

simon

But if you actually look at the list there are some professionals, there are some serious people in there as well.

kate

Like?

simon

Several, several. I can鈥檛 remember their names. It is a funny old list, but it always is. And the Shaw Trust their idea is get people talking about it.

kate

We鈥檒l talk about it even more next year when we鈥檙e on it, hey?

simon

You are of course listening to the slightly bitter 蜜芽传媒 Ouch with me Simon Minty.

kate

And me Kate Monaghan.

simon

It鈥檚 a disability thing, you know, and you can find all our episodes on the 蜜芽传媒 Sounds app which I鈥檓 starting to like. Over the past few months you can鈥檛 have missed all of the environmental stories and protests taking place, especially Extinction Rebellion. But how accessible is being green if you鈥檙e disabled? Sam Little is in Aberdeen. High there, Sam.

sam

Hey guys.

simon

Now, Sam is sight and hearing impaired but is passionate about doing all she can for the environment and will give us some tips on cleaning up later.

kate

Speaking of cleaning up, The Vacuum Cleaner, aka James Leadbitter is here. Hi James.

james

Hi, you guys, how are you doing?

kate

Is it James or Vacuum, Mr Cleaner?

james

You can go with James.

kate

And I know we鈥檝e asked you this before, but where did The Vacuum Cleaner come from?

james

It came from the very first piece of art I made which involved a vacuum cleaner, and the rest is up to your imagination.

kate

But you鈥檙e here to talk about your Madlove project, which is all about giving people with mental health difficulties power over what their care looks and feels like.

simon

Cue the music. [The Apprentice theme tune] Now, like me, he was an athlete first.

kate

[Laughs]

simon

What? He was an athlete first, but power athlete Souleyman Bah became the first disabled candidate on The Apprentice. Sadly he got knocked out in week 3 but he will be chatting to us later about the experience.

kate

I wasn鈥檛 laughing at Souleyman being an athlete; it was more your continued athletic claims. What have you been up to this month then, Simon?

simon

We had the Dwarf Sports UK Boccia weekend.

kate

Boccia, remind me what that is.

simon

It鈥檚 quite complex, Kate, I don鈥檛 want to over-explain it. You鈥檝e got little balls of like a beanbag and you throw them to try and get as near as you can as a jack. It is very inclusive: every person can play this, whatever your nature of disability you can play this.

kate

Even me.

simon

Yeah.

kate

Even you.

simon

Well, I am an athlete remember so it鈥檚 very natural for me. And in the bronze medal match, under a lot of pressure, my captain said, can you see it. And I went, I could do a spinner. And I went for it and it rolled up and hit the jack. I was so happy. I got a round of applause.

kate

Wow, great.

simon

You鈥檝e lost your enthusiasm.

kate

At throwing beanbags.

james

Well done, Simon, it sounds amazing.

simon

Thank you, James.

james

I鈥檓 really, really impressed.

simon

Thank you, James.

james

I can鈥檛 believe you鈥檙e not on that list of 100 people.

simon

This is the point, athlete and business person, me and Souleyman could be, we鈥檙e equal I think on this.

kate

Yeah, being a Paralympic sprinter and throwing a beanbag in a sports hall 鈥� pretty much the same, I鈥檇 say.

simon

Don鈥檛 be so dismissive young lady. [Laughter] There鈥檚 me being a patronising the middle-aged man. Sorry.

sam

Have you ever got an injury claim Boccia? It sounds like quite a dangerous sport with a beanbag flying around.

simon

Thank you Sam, thanks. Only my pride has been injured when I tell Kate about it. That鈥檚 the worst bit.

kate

I think it鈥檚 brilliant. I鈥檝e been along to the dwarf sports events and they are awesome. Just the term athlete that I take issue with. [Laughter]

simon

What have you been doing this month?

kate

I went to Canada. We went to visit Holly, my wife鈥檚 grandma, who names herself Super Gran. But what I liked about Canada was all the disabled signs, so all the parking spaces, all the toilets, they鈥檝e adopted the leaning forward racing chair thing which we haven鈥檛 got here.

simon

Power!

kate

Power in Canada. And it just makes you feel better. Why aren鈥檛 we using it here?

simon

I identify with it because it鈥檚 quite athletic. And there was a movement a little while back, because it was more active, it was a bit more positive, I think someone in an electric wheelchair just moving it with their little finger.

kate

Yeah, which is more me.

james

I like it because it doesn鈥檛 feel passive.

simon

Yeah.

kate

And I think people would look at it, other people and would think oh, it鈥檚 not as boring, it鈥檚 maybe a bit cooler.

simon

Yeah, I liked it. That kind of uplifted you, did it?

kate

It did; and it made me think, come on Kate, move a bit more in that chair. And also, come on UK, I feel like we鈥檙e falling behind a bit with this stuff.

simon

I see what you mean, yeah.

kate

I think it could be a lot better. And it鈥檚 not that hard to change, is it, from slow changes? Let鈥檚 get it going. Anyway if you鈥檙e an Ouch super fan you may remember a wonderful show I was involved in back in 2014, it鈥檚 probably a bit before your time, Simon?

simon

It was.

kate

When we had The Vacuum Cleaner, James Leadbitter on, who describes himself as an art and activist collective of one.

simon

Back then he was talking about his new venture Madlove, and the idea of the designer asylum where people who need care get a say in what that care should look like and feel like. So, five years on where is Madlove now?

james

It鈥檚 in St Helens obviously! [Laughter]

kate

I mean, where else would it be?

james

Where else is it going to be!

simon

Is that a good thing?

james

It鈥檚 a great thing because it鈥檚 a place that really needs it right now.

kate

So, what鈥檚 it doing in St Helens?

james

So, in St Helens 鈥� sad part first and then hopeful bit afterwards, okay 鈥� so St Helens currently has the highest suicide rate in England and Wales, large poverty, community really, really struggling, a town struggling. We were invited to go there by a super amazing arts organisation called Heart of Glass, and we have taken over the empty Argos shop on the high street and for the month of November we are opening a Madlove Take Over. So, it will be a space of sanctuary, of luxury. We鈥檝e also invited 13 artists from around the world to come and put some artwork in that space and work with the local community to make that artwork.

kate

So, sanctuary and luxury what does that look like?

james

We have a beautiful 7 metre table cut from ash tree, so it feels a bit like a luxury kitchen, so you walk in you have a very familiar experience. We have our own blend of tea which has been made especially for us, so you can come in and get free tea. We have lots of little hiding snug places. We鈥檝e got a forest in the ceiling.

simon

What鈥檚 the tea going to be called?

james

It鈥檚 just called the St Helens Brew I think.

kate

Not men-tea health.

simon

I thought mad hat-tea! Okay, inappropriate starts!

james

No, quite appropriate.

simon

Sounds awesome.

kate

Who is it for?

james

It鈥檚 for anybody. Everything there is free, so all the shows are free, so on the opening night we have Touretteshero, Jess Thom.

kate

Who designed it?

james

I have. We had a very small budget so we鈥檝e used cardboard tubes and we鈥檝e used wool carpet underlay to build the theatre and scaffolding. In terms of the design I鈥檝e been travelling around doing workshops with people in numerous mental health hospitals in the UK and also outside of the UK, and in that I have spoken to over 500 people to get them to articulate what their care needs are: so if they鈥檙e going to be in hospital what would that place be like to support them on their journeys.

simon

When you say outside of the country were other countries or cultures slightly different or did it come back the same?

james

Everybody says the same thing whether we were in Indonesia or Latvia; people want contact with nature and people want stimulation. So, the senses are stimulated, the sense of smell, the sense of touch; there鈥檚 lots to do so you鈥檙e not stewing in boredom; and that is in a natural environment, so the value of mountains, rivers, swimming; and that there are people around. A lot of the things that came up is, I want somebody that鈥檚 there. Or there are people who are employed who are there 24 hours a day and you can go and sit down and have that chat, have that moment.

simon

Wow.

james

The other really amazing thing is everywhere in the world people have said I want people to support me who are supported properly, so they鈥檙e paid properly, they鈥檙e not tired and stressed out and everything as well. So, that awareness of the carer鈥檚 value.

kate

Why are you doing this?

james

That鈥檚 a very good question! I am doing this because my experience of inpatient mental health care has been poor.

kate

Your personal experience?

james

Yeah, my personal experience. I do something and people contact me later and people say, this has had this effect on me, or it enabled me to talk about my own experiences or reach out to my family. Or literally I鈥檝e had messages like, you don鈥檛 realise this but you鈥檝e helped save my life. And I go, okay, apart from my disability I鈥檓 a white man in a very wealthy country, I鈥檝e got so much privilege, I鈥檇 best step up and help other people.

simon

Earlier this year you went into Great Ormond Street Hospital for a fabulously named project, Oh My Gosh, You鈥檙e Wellcome鈥�Kitten.

kate

Did Simon say that right? Because I was wondering about the intonation, Oh My Gosh! You鈥檙e Wellcome, Kitten.

james

Oh My Gosh, You鈥檙e Welcome!... Kitten.

kate

That鈥檚 what I thought.

james

I worked at the Mildred Creek Unit, which is the inpatient mental health ward at Great Ormond Street, over six months, so I was there once a week or during the school holidays working quite intensely. That is a ten-bed very specialist ward for kids that are struggling with a range of mental health struggles.

simon

I went to Great Ormond Street as a child every six months for check-ups and I think of Great Ormond Street as physical or musculoskeletal and all that, and I was reading about your work and I was like oh my goodness me, there鈥檚 this whole area of mental health, and there are theses eight, nine year olds. A mother recently who talked about her eight year old with anxiety and depression. It鈥檚 relatively new to me. Has Great Ormond Street always had this capacity?

james

It鈥檚 not always been there. I think it has been there for quite a while, i.e. decades. The way that that unit works is it鈥檚 supporting kids that have a physical impairment and possibly a learning disability and a mental health struggle on top of that.

simon

Wow.

james

So, they鈥檝e got very complex experiences. So, they might have problems digesting food and have an eating disorder on top of that.

kate

And so what were you doing with them?

james

We made them their very own art studio. We managed to find a ward and we transformed that into an art studio for them. And every week we were doing different exercises around what these kids would like to see when they look out the window, what smells support them, what activities support them. We took them out on trips, so we took them to John Lewis and we tried every single bed in John Lewis, we tried every fluffy pillow. We didn鈥檛 run riot in John Lewis but we certainly had a good time. We went to Kew Gardens to look at the orchid exhibition and think about nature and what they find beautiful. And over the time they came up with I think over 170 suggestions of what they wanted in their perfect environment to support themselves.

kate

What did they say?

simon

Yeah, I want to know what some of those were.

james

It was a really exhaustive list, but we narrowed that list of 170 down to 27 things that went into the exhibition that they made for the Wellcome Collection. That show is called Being Human; it鈥檚 being billed as the most accessible exhibition in the UK. So, what 27 things are in that show? There鈥檚 everything from they want to control the weather, because it reminds them that they鈥檙e alive; they want a swimming pool; they want a multipurpose activity room; they want the smell of lavender, they want the smell of raspberries.

kate

Some of these they鈥檙e obviously big things that maybe can鈥檛 happen in great Ormond Street. But is the hospital taking on some of these simpler suggestions?

james

It works in a few different ways. The ward is being redeveloped and all of our research and all of these kids鈥� suggestions is feeding into the brief for that new ward. It helps the young people in the room at that moment in time in terms of their wellbeing, them having a voice and agency. If we take them away they can push the boundaries a little bit, which is super useful for young people. And it鈥檚 also helping the staff think about new ways of working. So, a lot of the feedback from the staff was about how coproduction can be really useful in these spaces.

simon

The atmosphere on the ward: I love what you鈥檙e doing and I love the art part and I love the fact that these are users who are leading it; but what is the atmosphere like on a ward like that? And then even maybe afterwards, can you see a change?

james

It really varies because let鈥檚 be really honest, some of these kids were really distressed, and that was really hard going. But also sometimes we had them for a day in the studio and they were super focused, super calm, super engaged. It鈥檚 difficult to say it has a very tangible outcome like that because how do you measure the health of the human mind? I don鈥檛 know how you do that. But it definitely helped their group dynamics; it distracted them from boredom. I think it also helped them bond to each other.

kate

And what was it like for you being there and on the ward and stuff?

james

I had some proper amazing experiences, like really funny, silly. I鈥檝e listened to so much Billie Eilish you would not believe, [laughter] all the K-pop things. And sometimes it was distressing, I can鈥檛 lie. Sometimes I would come home and get very, very upset because of relatable experience, because of safeguarding situations.

simon

How do you carry on if it鈥檚 hurting yourself?

james

Well, I think that鈥檚 one thing I really need to learn to do better. There are a lot of disabled artists trying to figure out how to do this. Having my access requirements met to work in that situation, so making sure that I can get a taxi home, that I鈥檓 not working the next day; having oversight therapy was really useful so I could offload onto somebody else. And then also the psychological team at Great Ormond Street had input as well, so they would give advice like saying, actually if you鈥檙e not physically tired just walk home and mull your thoughts over and just take that time. And then other things like they would say, the reason the child in this situation is not your fault. They kept saying that to me: you are part of the solution here so don鈥檛 feel like you鈥檙e making things worse; you鈥檙e really doing something good here, and remember all those good achievements that you鈥檝e had in that room.

simon

I had a note from something you wrote about, and you鈥檝e just alluded to it, about the measuring of the health of the human mind.

james

Well, I think within mental health more generally the dominant model is a science model. And I鈥檓 not throwing that out the window, there鈥檚 a place for it, but I think we have to think about the value of art and therapy and good housing and good benefits and all those things that we鈥檝e lost recently because that is the thing that gives your life meaning, will keep you on a journey in a way. So, trying to find the intersection between those things as an artist is super interesting.

kate

Sam, let鈥檚 bring you in here, what does good care look like for you, mental health wise or otherwise I guess?

sam

I think the fact that people are talking about it is a huge thing. Because when I first got diagnosed about 13 years ago it just wasn鈥檛 even something that was mentioned that actually going through this experience will really affect how you feel and your mental health. I think for me just having safe spaces like you were just talking about there James, if I鈥檇 had access to that when I was a 16 year old, just found out that I鈥檓 going to lose my sight, I just think it would have made a massive difference to how I embraced life and how I felt and all the decisions I made.

james

I think the thing about relatable experiences is really important because it鈥檚 something I can really identify with being in an adolescent mental health ward. And if I鈥檇 have met adults that had gone on a similar journey and they had shared that with me it would have given me so much hope and the ability to go, that person鈥檚 been on that journey. And then you can ask questions that only that relatable experience will be able to share with you. I really agree with that.

sam

Was much mentioned about social media with the young people that you spoke to? Because I know when I was a young person I got diagnosed you didn鈥檛 really have things like Facebook groups or inspirational role models that you could watch videos of on YouTube or anything like that. What were their thoughts on it?

james

Interestingly they weren鈥檛 allowed to use social media while they were in the hospital.

simon

Yeah.

james

And that tells you everything that you need to know. [Laughs] We would do supervised Instagram posting but it had to be supervised.

simon

Slightly weird segway: new haircut going on here. What do you think?

kate

What, the Olympic rings that you鈥檝e got shaved into the side of your head there?

simon

Paralympic rings, wheelchair user leaning forward in their wheelchair. I鈥檓 calling it my Peaky Blinders haircut because it鈥檚 really short on the side and the back and then this big thing on the top.

kate

Yeah, it looks good.

simon

To have a very short haircut you have to go every three weeks. I can鈥檛 be bothered.

kate

No.

simon

So, I got these clippers and then I got my family to do it and they were all getting stressed by it. There is a link. James, you鈥檙e coming back to London to take over a brand new hairdressers. Is that because you need a haircut? I mean, you鈥檝e got a moustache.

kate

I was going to say, I鈥檇 suggest a moustache trim perhaps.

james

Oh wow!

simon

All right, going a little bit鈥�

james

Super spicy in the show now! So, the festival that we鈥檙e doing in St Helens we are bringing down to London for the weekend 23-24 November just to share some of the work we鈥檝e been doing up there. So, on the Saturday we have Hwa Jung who鈥檚 the artist who鈥檚 made the care map of St Helen鈥檚, which is a map of the whole town and all the places you can get care there, she鈥檚 going to come down and do a small version of Walthamstow. On the Saturday you can come down to the hairdressers and get a haircut. It鈥檚 called Bangs. You can get your nails done.

simon

Do I have to have a mental ill health or can I just pop up?

james

It鈥檚 for people on a low income.

simon

Oh okay.

kate

That is not you, Simon.

james

He鈥檚 not on the Power 100 list; his income might have gone down now.

simon

Yeah.

kate

You鈥檇 say that, but if you saw the amount of money that boy gets from getting disability confident training, I mean, he does not need鈥�

james

Sorry Simon. You can still come along because on the Sunday鈥�

simon

One gig.

james

鈥�we鈥檝e got the Touretteshero knowledge project which is about sharing stories from disability activism, disability arts that have been happening recently, but on a really grass roots way. So, we鈥檙e having some podcast recordings that are happening in the hairdressers and we鈥檝e got a super international line-up of people talking and you can come along to that as well.

simon

Awesome.

kate

Including Simon and Kate from the Ouch podcast?

james

We can鈥檛 afford your unionised rates. [Laughter]

kate

Damn straight you can鈥檛! How do we find out more?

james

If you go to thevacuumcleaner.co.uk.

kate

Great, because when I鈥檝e been googling Argos and vacuum cleaner [laughter] you just don鈥檛 feature, I鈥檓 afraid.

james

Yeah, fail.

kate

Yeah.

simon

Keep going with your work, James. I love what you鈥檙e doing. I think it鈥檚 cool, it鈥檚 very cool.

james

Thanks so much.

kate

Now, let鈥檚 hear that music again shall we? [The Apprentice theme tune] The Apprentice, one of the biggest shows on TV still after all these years. Simon, a bit of a fan?

simon

I dip in and out.

kate

Well I鈥檝e been saying for hundreds and hundreds of years, where are the disabled people, and this year we鈥檝e had our very first one. Hooray! [Laughter] Candidate Souleyman Bah is a para-athlete, motivational speaker, entrepreneur and the first ever disabled contestant on the show. But after just three weeks it鈥檚 all over following a toy making task. Now, before we get to the nitty-gritty, Souleyman I鈥檓 really sorry, but we鈥檙e going to make you relive that boardroom experience with this clip.

alan sugar

[Video Clip] Now, look Souleyman, quite honestly to put yourself forward to come into this process was a giant leap and brave. Having said that, you鈥檙e a sportsman, right, and you know positivity is a very, very strong point in team. And yet you weren鈥檛 bringing any positivity to the team. And it鈥檚 for that reason, Souleyman, it is with regret you鈥檙e fired.

simon

So, what happened? Have you recovered from the dressing down and the experience?

souleyman

It was quite tense actually. I feel exactly the way I felt when I got fired, you know when you get that knot in the pit of your stomach.

simon

It does look immensely stressful and everyone turns into dog eat dog.

souleyman

Yeah absolutely, and that鈥檚 one of the things I didn鈥檛 want to fall into the trap of. I think it can get very heated and you obviously naturally want to defend yourself. But I think as a businessman you have to stay composed and you can鈥檛 go with your emotions. And I think obviously to survive in the boardroom you have to show you鈥檙e loud, and that鈥檚 one thing I didn鈥檛 do, so that鈥檚 probably why I predominantly got fired.

kate

I鈥檓 so bored of everyone who says, thank you for the experience, thank you, thank you for the chance. I just really want someone to turn around to him鈥�

simon

Screw you!

kate

Yeah, and basically say, all right, here鈥檚 what I think about you. [Laughter] Were you not tempted?

souleyman

I was thinking about that. I was thinking of saying, you know what, Lord Sugar, you鈥檙e fired. It is a great experience and I think there were a lot of things I wanted to do, I did want to project manage one of the tasks, and I was gutted to see that the next one was sports related. It was just a shame. I think there were a lot of skills and characteristics that I showed which weren鈥檛 kept in the final edit. Because obviously there was a huge conversation about disability in the workplace and I contributed heavily in all of the tasks but they only show clips of me telling jokes and鈥� [hooting noise]

kate

Where are you Souleyman? It sounds like you鈥檙e in an old-fashioned steam train station.

souleyman

Sorry, I鈥檓 just in Clapham Junction.

kate

Close enough, Kate.

souleyman

Yeah.

simon

You say that, and Kate and I were watching it in our respective homes, and I could see it looked like they were edited so you were going to come out of the show. Now, we have two producers of Ouch who are blind people, they have assistance in certain duties and certain things that are difficult to do. We never saw you. Did you have an assistant sometimes in the show and that was just edited out?

souleyman

I didn鈥檛 have any assistance during tasks; it was just me. And I think there were times where I did have a disadvantage.

kate

Can you just tell me what your disability is? Because to be honest watching the series it was barely touched on so I am actually not 100% sure.

souleyman

I have a visual impairment called RP, so I currently have about 10% of sight in one of my eyes. And I have something called night blindness as well so I can鈥檛 see very well in the dark, and I have to use a long cane to help me get around. I think you saw clips of it in the edits but nothing too much.

kate

No.

souleyman

That鈥檚 the thing as well, I had to work twice as hard just to get onto it. There were 70,000 applicants this year and I made the final 16. If you knew what the audition process was like you wouldn鈥檛 even apply; it鈥檚 absolutely gruelling. It鈥檚 like eight levels of auditions where you have to go into Central London, there鈥檚 25 hours of administration back and forth, they have to vet you, your family. It鈥檚 so stressful. And I think the fact that I took on that challenge, and none of my hard work was displayed on the final edit just was very annoying and frustrating.

kate

I have to say one of the things that I think is absolutely brilliant that finally, after 15 series, we have a disabled candidate on this show. Other reality shows are also doing their damndest to get disability included, which is great. But the one thing that I find really frustrating is that you don鈥檛 see how much harder it is for a disabled person to do the job at the same rate as other people. I鈥檓 sure there were times during The Apprentice where you were like, this is so much harder for me, but I want to be the same as everybody else so I鈥檓 not going to say how much harder this is. But I feel like we kind of need to know how much harder it is for you.

souleyman

I will say one thing, the production and the behind the scenes team were very helpful. We were in The Apprentice house they鈥檇 always ask if I鈥檓 okay, if there鈥檚 anything I need accessibility-wise in the house. That was absolutely fine, I have no major things to say about that. It was just for me on the actual tasks where it mattered, when we were doing corporate things or where we were making ice lollies, we were on safari, I kind of put myself in positions where I was useful to the team rather than try to complain that this isn鈥檛 fair and that isn鈥檛 fair. Because I think that鈥檚 another people put you down on: if you talk about your disability they say, oh you鈥檙e using the disability card to try and justify why you should have extra help. When realistically I do need extra help and extra adjustments to make sure that it鈥檚 a level playing field.

simon

And it鈥檚 a bit you鈥檙e damned if you do, you鈥檙e damned if you don鈥檛.

kate

Yeah.

SIMON

David Blunkett who used to be our 蜜芽传媒 Office minister a decade or so ago, maybe more, and he was blind and he said, I always have to do a couple of hours extra than everybody else which you don鈥檛 see just to maintain it. But I always kind of think if you鈥檙e in a team like that did the team sort of chip in? Because I was expecting them to be describing things to you or saying this is what we鈥檙e going to be doing. And I didn鈥檛 see that and I just wondered whether that just didn鈥檛 happen.

souleyman

When it鈥檚 such a tense environment like that everybody is just trying to do something so they have something to say in the boardroom. And I think as much as they wanted to help 鈥� which they did, like I said, in accessibility terms when we had to walk through dark areas or go upstairs they did help me 鈥� but the actual challenges and the actual tasks everybody was just in it for themselves. And I think that鈥檚 where I could have spoken up a little bit and went, guys this isn鈥檛 fair. But I didn鈥檛 want to do that. I just thought, I鈥檝e tried so hard to be here I might as well just go on and see how far.

kate

Would you do it differently now?

souleyman

I think I would. I think I would have spoken up, because obviously if I鈥檇 known before I would have said something which would have changed something, which would have meant I would have stayed in the process for a little bit longer. For example, when we made the toys it was designing on a screen which I couldn鈥檛 see; it was making the toys, about colours, about so many different things that were visual. And obviously me having a visual impairment automatically restricts what I can do. So, I thought rather than trying to persist in that I thought maybe I could, like he said, be a commentator and tell them what they were doing wrong and hope that we would work as a team to try and fix it. But obviously they used that against me. I think if I did have that help to contribute more into the task there wouldn鈥檛 have been a reason why I was [inaudible 0:28:26?].

kate

I wonder if you鈥檇 actually said in the boardroom, I couldn鈥檛 see it, Lord Sugar, and nobody told me what was on the screen, I don鈥檛 think he could have fired you then. The problem is it鈥檚 so scary to put yourself out there.

simon

But also Souleyman, I kind of get that bit where you just want to be seen for your skills, and if people are nervous about employing blind people you don鈥檛 want to let the side down. Okay, there鈥檚 a controversial bit at the end when they鈥檙e firing you he said, with regret. And Lord Sugar also said, you鈥檝e been brave because this was a big leap for you to take part. How did you take that? Was it patronising or was it accurate? I don鈥檛 know.

souleyman

Oh absolutely. I think he鈥檚 never, ever said that to a candidate before, and me holding my white cane and going into that boardroom he鈥檚 obviously registered me as being someone of a disability. And then to fire me and say that it was brave of me to come on the show I just felt was a little bit belittling to my effort of not only getting on the show but participating. I don鈥檛 understand what鈥檚 brave about it. If I鈥檓 brave then so is everybody else and why wouldn鈥檛 you say that to everybody else. On a day-to-day basis I and many other disabled people hear, oh you鈥檙e so brave for doing this, you鈥檙e so brave for doing that.

simon

Yeah.

souleyman

And it鈥檚 like, but what else are we going to do? We have to live our life and we have to persist. And I think with the audition process bringing in all my proof that I鈥檓 a legitimate business person, going through all those hurdles, being on the process, staying till the third week, I don鈥檛 understand where the bravery is in that; I just see it as being determined, ambitious, persistent and hardworking.

simon

And you're not allowed to talk back to him, are you? But when he said brave, you could have said, I have been brave because you haven鈥檛 given me the right support you cheeky whatsit. [Laughter] That might have been the only bit. Talking about the business idea you were hoping to win 拢250,000 in investment; what was your business plan?

souleyman

My business plan is called Vision Beyond Sight and it鈥檚 bringing in inspirational individuals to schools, to inspire young people to improve their physical and mental health, and also to do some sort of Olympic style workouts. And then the other side of the business is to go into corporate settings to talk about disability in the workplace and do teambuilding activities where they wear vision simulation goggles and play different ball games and work related activities just to get an experience of what a vision impairment is like.

sam

If you hadn鈥檛 been the only disabled contestant on the programme, if there鈥檇 been someone else, do you think you would have a different experience or different issues would have been addressed in a different way or he maybe wouldn鈥檛 have used that language?

souleyman

Oh yeah definitely. I think with the first of anything there are always going to be issues and problems and challenges that get addressed. So, as much as I鈥檓 not happy about it I do understand it. This is their first time as well. And I suppose through having conversations like this we can address those issues and address those flaws in language and address those flaws in accessibility and improve it for the next person and improve it for the next person. Same with my education experience: I come from a country called Guinea in West Africa and my first schooling experience was atrocious, they didn鈥檛 have any form of disabled assistance, and that鈥檚 why my family moved me to the UK. So, I think it鈥檚 going to be the same evolution for shows like The Apprentice.

simon

And it鈥檚 the true sense of inclusion as in it鈥檚 a bit more seamless and a little less clunky as we feel it. You鈥檙e lucky like me, you鈥檝e always got athletics to fall back on. [Laughter] You鈥檙e already training for the Tokyo 2020 Games?

souleyman

Yeah, absolutely, that has begun. We鈥檙e in winter season at the minute, running long distances, pushing trainers, doing all the tough gritty stuff that no one wants to do.

kate

What鈥檚 your sport?

souleyman

100 metres T13.

kate

Wow. So, while you focus on the sport is business taking a back seat?

souleyman

I mean, obviously with every extra commitment you add one is going to suffer, so definitely sport is at the top of my list as my priority. But then anywhere I can squeeze my business and do talks and events I鈥檓 more than happy and I鈥檓 more than flexible. So, I鈥檓 going to try both.

kate

James, would you ever go on The Apprentice, do you think?

james

No.

kate

And Sam, how about you?

sam

Oh gosh, it sounds terrifying. I think I might wait for a few more disabled people to go on it first before I鈥�

james

Sam, shall we apply together?

sam

Yes do!

james

I鈥檒l have a panic attack in the boardroom in front of Lord Sugar.

sam

And I鈥檒l guide you the wrong way.

kate

Souleyman, who would you like to win and who do you think will win The Apprentice this year?

simon

Good question.

souleyman

That鈥檚 a good question. There are two people who I think have a very strong chance. On the boys鈥� side it would have to be Lewis who鈥檚 shown a lot of good leadership and boldness and just been really good all round. And Scarlett as well from the girls because she鈥檚 shown a lot of corporate initiative, she鈥檚 really good at talking in the boardroom and backing herself up. So, I think those two have a really strong chance.

simon

Well done for doing it. You wanted to do a bit more and it must be really tough to have that pulled away from you.

souleyman

Thank you so much, thank you, really appreciate it.

kate

Now from one wild environment to another: Sam Little lives up in Scotland and works for the 蜜芽传媒. But her real passion is the environment and what she can do to be greener. We鈥檝e all seen the protests and lots of people are trying to do their bit, but how accessible is this new movement? Now, Sam, you have got Usher Syndrome.

sam

I do.

kate

Tell me what that is.

sam

It鈥檚 a combination of hearing and sight loss. I was born with moderate hearing impairment, and then when I was a teenager I was diagnosed with RP, so a bit like Souleyman there.

kate

What鈥檚 RP?

sam

Retinitis pigmentosa. So, essentially I have no peripheral vision and I struggle to see in the dark and contrast light and dark and spatial awareness and things like that. Up until two years ago I was a cane user and I鈥檓 now the user of Ziggy the guide dog, and I wear hearing aids as well.

simon

Being disabled sometimes you need extra stuff or different stuff. Is that the same with you? Does it make being green very hard?

sam

Yes and no. I think actually having a disability has allowed me to actually be quite good at being green in some respects. One element I would say is you have to be super organised; if you鈥檙e wanting to take your jars to your local zero waste shop and fill them up with pasta or whatever, or make sure you go to a market to pick up your loose fruit and veg you have to be organised, you have to have somebody to go with you and help you. And I have to do that every day of my life anyway: I have to think about how am I going to get from A to B; am I going to need food for Ziggy鈥檚 dinner tonight because I鈥檓 not going to be home till late and things like that. So, in some respects it鈥檚 actually helped because it鈥檚 already a part of my life. And then in other elements it鈥檚 really difficult because I have to get somebody to help me go to that market.

And it鈥檚 the same with transport: that鈥檚 probably the most difficult thing because there are some days where I can鈥檛 get a train or I can鈥檛 get a bus, whether it鈥檚 just from pure fatigue or the weather鈥檚 so horrific that I cannot take Ziggy out in that weather. But there are so few taxi companies that have electric vehicles or hybrid vehicles, so every time I get in a taxi I鈥檓 like oh no, I鈥檓 killing the planet a little bit more. But I鈥檝e got to think about my safety and my wellbeing at the same time, so I find that really difficult.

simon

I read in one of your blogs every time you book a taxi you ask whether they鈥檝e got an electric car because if you keep asking maybe one day they鈥檒l get it, sort of thing. I quite liked that.

sam

Yes, that鈥檚 the idea, sort of supply and demand. I was actually, just by pure chance, getting a taxi in Dundee and it was an electric Tesla and I was like, is this a taxi. He was like, yeah I鈥檓 a taxi. I was like, are you sure. I was even more surprised that he was quite happy for Ziggy to get into his electric Tesla because it smelt amazing. I鈥檓 still convinced it was a mistake but it was very fun.

simon

James, you were nodding when we were talking about being green and disability. Is that part of your life, is that conscious?

james

My background is as an environmental activist, that鈥檚 what I was doing in the noughties, things like Climate Camp and things like that. But it鈥檚 something I have to think about a lot with my job as I have to travel a lot. I try to take the train as much as possible to Germany, Switzerland, whatever, but sometimes I鈥檓 like I am exhausted, fatigue is kicking in and my body鈥檚 sore and I鈥檓 getting distressed and I will go, I鈥檓 going to get on the plane and fly. I鈥檓 always weighing that up between my access requirements and the environment, and there is a tension there sometimes absolutely.

simon

Sam, what got you interested in the environment?

sam

It was actually the campaign Plastic Free July and in the lead up to that as well I was reading about these beach clean-ups. And I make videos for The Social as a contributor, so I was like oh, I鈥檒l go and make a video about the beach clean-up in Aberdeen, you never hear about that. And I don鈥檛 know if this happens with you guys, sometimes you forget you have a disability and you鈥檙e like, I鈥檒l come along and do that.

kate

Yeah.

sam

And then you get there and you鈥檒l be like, oh yeah, I didn鈥檛 think about that or I should have remembered to organise that. But luckily I had my husband with me and one of the other contributors filming, but even then I was just like, oh how am I going to spot things. I remember one time I said to Mike, my husband, oh look, I think there鈥檚 a cotton bud over there. And he was like, no Sam, it鈥檚 just a stick. Great. So, I was like, do you know what, I鈥檓 just going to walk over here, go over my script, I鈥檒l let you guys do the clean-up.

simon

So, you鈥檙e doing your personal stuff but how about protesting? Have you considered going on protests? Do you think they鈥檙e accessible?

sam

As we know there was a big climate change protest in September fuelled by Greta Thunberg鈥檚 Fridays for Future. I really wanted to go but unfortunately my mental health wasn鈥檛 that great at the time and I was like, but what am I going to do about Ziggy; even if I don鈥檛 take Ziggy I鈥檝e got to find somebody to look after him; and then I鈥檝e got to find somebody to go with to help me and use my cane; nobody ever sees my cane so am I going to get really stressed; it is going to be really loud, people yelling and shouting. And I know they鈥檙e very peaceful and non-violent but it doesn鈥檛 mean it鈥檚 not going to be a stressful situation. And I wasn鈥檛 actual able to find anyone with a disability who鈥檇 been on a protest like that before to just find out how they did it. So, I just decided that, do you know what, I鈥檓 just going to keep doing what I can. I talk about it every moment I can. It really annoys my friends and family because they鈥檙e like, oh Sam鈥檚 banging on about climate change again. I use my position on The Social to make content. I come on podcasts like this to talk about it. So, I try not to feel too bad about now going on protests. And I do hope that one day I have the confidence to go and do it or have people that I can go and do it with.

kate

I guess it鈥檚 not just having the confidence; it鈥檚 knowing that it will be accessible for you and something you are able to do.

sam

Yeah.

kate

I don鈥檛 know how intersectional you think the climate change activism is at the moment anyway? Do you think it鈥檚 something that welcomes disability? Because I just keep thinking back to the plastic straws debate and how everybody jumped on the plastic straws and it was all about how disabled people were ruining the planet because they were using plastic straws.

simon

Well, there are also the car-free days which you can have and that can be really problematic for some of the disabilities. So, there鈥檚 that clash.

kate

Yeah, that means you can鈥檛 go anywhere.

sam

And I think this is where the problem lies in that people are being expected to change the world by doing these small things and adjusting their lifestyle; whereas really what needs to change is policy and infrastructure. What it needs to be is an affordable electric car that allows you to drive around and be as independent as you are with a normal petrol car. The technology to provide plastic straws that are made out of a plant-based plastic so people can still dispose of them and use them in a way that鈥檚 accessible for them 鈥� that鈥檚 what needs to change. I鈥檓 a big believer in every little helps, but even that accumulatively we cannot change what isn鈥檛 there; there needs to be able to be the tools, the resources, the services to allow us to be green and have accessible lives. And at the moment it鈥檚 just really difficult.听

simon

James, you turned to the vacuum cleaner there and your work is a sort of protest because you got a bit bored of regular protests. You just alluded to something. So, what do you think of Extinction Rebellion?

james

I鈥檓 really happy that a lot of people are taking to the streets. I do think they need to address some things quite urgently, like how white the movement is, how middle class it is, how inaccessible it is. I would love to see Extinction Rebellion doing, if they鈥檙e going to take over three or four spaces in central London, for one of them to be much more accessible and for that intersection between disabled people and environmentalists coming together and working together. Because I think what disabled people can offer is that we鈥檙e really good at surviving, we鈥檝e got good survival strategies, and as the climate crisis gets worse our survival strategies are going to be really relevant. So, there鈥檚 good knowledge exchange there: what can we offer them and what can they offer us and how can we work together better rather than it just being it鈥檚 just about the environment and nothing else.

sam

I totally agree with that. You鈥檝e hit the nail on the head: we adapt all the time, we鈥檙e always having to just deal with what鈥檚 in front of us. A lot of people will say, Sam how can you be bothered to deal with everything you deal with and travel that way. And I鈥檓 like, because this is what I do every day, and because I believe if we don鈥檛 do this we are going to face even bigger issues. But if you don鈥檛 have the confidence or the access to go and join a protest how are people going to get used to people with disabilities, seeing them protesting and finding out what those access issues might be.

kate

A lot of environmentally friendly things cost more money. We鈥檙e talking about electric cars. They might not be able to afford to take time off work in order to go to the protest. And with more disabled people living in poverty it鈥檚 a double whammy of you can鈥檛 access it and also you can鈥檛 afford it.

simon

I liked the way you explained it, James. You were saying actually by missing other people out you鈥檙e not as well informed as you could be.

james

But also the world鈥檚 most famous climate change activist at the moment is a disabled person.

simon

Yes, she is.

james

And that鈥檚 really amazing, and she is making it happen.

simon

Sam, do you have some disability and environmentally friendly tips?

sam

The first one is don鈥檛 feel bad about what you can or can鈥檛 do. As long as you just do one thing that鈥檚 amazing because it鈥檚 more than you were doing before. I think the second thing is when it comes to trying to be more environmentally friendly, whether it鈥檚 changing how you shop or looking at how you travel just be organised. The third top tip would just be talk to everybody about it, find out what they鈥檙e doing. It might be that one of your friends is already doing something that you had no idea is something that could be done. That鈥檚 how I鈥檝e learned about a lot of the things that I do. For those of you who are guide dog users get biodegradable pooh bags. They come lavender scented and they鈥檙e very cheap; you can buy them online.

kate

Nice.

sam

And I guess when it comes to things like events and protests don鈥檛 be afraid to get in touch and say, I really want to be involved, these are my access requirements, what can you do to help. Because the more that we do that the more that they鈥檒l bear it in mind when they are organising protests and they are organising events. So, those are my top tips for trying to be a more green disabled person.

kate

Amazing.

simon

Thank you very much, Sam. That鈥檚 almost it for this month鈥檚 podcast but we do have a fabulous tweet that we wanted to read out. On one of our recent shows guest Lucy Watts talked to us about defying two life markers. Well, it was her birthday recently and she tweeted this:

kate

Today I turned 26, another year of defying death. Not an easy year by any means, but nevertheless an incredible full and unforgettable one. Thanks to all the family, friends and colleagues and medical professionals who have all helped me get to where I am today. Happy birthday Lucy!

simon

Happy birthday!

kate

And also congratulations on making into the top ten of the Disability Power List. That鈥檚 a pretty good birthday present.

simon

That really is it for the October edition of 蜜芽传媒 Ouch. Thanks to our guests James Leadbitter, Sam Little and Souleyman Bah.

kate

The producer was Beth Rose with help from Harry Lowe and Niamh Hughes. Today鈥檚 studio manager was Jack Morris.

simon

Thanks for listening, and congratulations to anyone who made the Power List.

kate

We鈥檒l keep trying, Simon, we鈥檒l keep trying.

simon

You know what you need to do, listener.

kate

Get those nomination forms in. [Laughter] Don鈥檛 forget you can listen to all our podcasts on 蜜芽传媒 Sounds, email us ouch@bbc.co.uk, tweet @bbcouch, or find us on Facebook. Oh, and Simon, I鈥檝e got two words for you.

simon

Oh yeah?

kate

You鈥檙e fired. Goodbye.

听