Ouch final pod November 2016

bbc.co.uk/ouch/podcast

Presented by Kate Monaghan and Simon Minty

[Jingle: Ouch.]

SIMON It’s Ouch talk show for November. We do what’s loosely

described as disability talk, but thanks for tuning in

anyway.

KATE Ha, ha, ha!

SIMON I’m Simon Minty.

KATE And I’m Kate Monaghan and we’ll introduce our guests

shortly, but first of all so much more importantly is I hear

you’ve been to Dubai, Simon?

SIMON I did.

KATE You really get around the place don’t you?

SIMON Thank you, yeah. My cousin got married. He lives there.

He got married to his British wife there as well. It’s very

bling, very full on.

KATE Is it?

SIMON I think they had five days of celebration, it was exhausting.

I’ve not been well. Cough and fever and everything.

KATE Oh poor old you.

SIMON How are you? How’s Scout?

KATE Yeah, Scout’s great thank you.

SIMON I should just ask how are you though, because you are an

independent person.

KATE Yeah. I am an intendent person. And to celebrate that,

actually Holly and I had our first date night last week.

SIMON Oh, what without the buba?

KATE Without the baby, yeah, which was very exciting.

SIMON Who babysat though? Family?

KATE Yeah, so Holly’s mum.

SIMON Very trusting, didn’t put her just in the crèche or

something?

KATE Yeah, we just left her actually with the cats. We’ve got

four cats so they can look after her. There’s always

someone around.

SIMON Michael Gove did it with his 11 year old child and two

dogs in a hotel.

KATE Exactly yeah. If he can do it I can, it’s fine.

SIMON Yeah, come on relax. Why are we all worried about this

thing?

KATE Yeah. And what was Dubai like for disability then?

SIMON It’s a bit difficult, I’m not going to pretend that.

KATE Really?

SIMON I first went there about ten years ago and I’ve been two or

three times since for various reasons. It is better.

KATE You’d think with all that money that they’d have

everything perfect.

SIMON No, it’s different, they’re doing what we do, they don’t

think about it and I tell them and I say, “Look, you’ve got

the chance to get this perfect from the start,” and they go,

“Oh don’t worry, we’ll just get it all up, let’s get the

buildings up and then we’ll go and have a look at it again.”

KATE Really?

SIMON And you’re like no, but you could do it properly but you

can’t… However, there’s this stretch called Jumeirah

Beach Road which is the kind of main touristy

thoroughfare now and that had dropped kerbs everywhere.

It’s the first time I went where I didn’t feel stranded in my

hotel, I could go out and about and have my mobility

scooter. I wasn’t the only person, I did bump into one other

British disabled person, they had an umbrella because it

was so hot like a little parasol which I thought was a great

idea. And they’d had a torrid time going to Thailand and

Dubai. So travel’s still difficult.

KATE But you didn’t see any sort of native people in Dubai with

disabilities?

SIMON Nope.

KATE Wow.

SIMON Ten years ago I went and I stayed in a hotel and I asked

when I was leaving, I said, “Could I see your accessible

room, just to see what’s it’s like?” And they showed me

and I said, “It’s all the same except the balcony’s just been

blocked off.” And I think that’s because they thought if

you’re disabled we’d want to throw ourselves off. And that

was their concession to disability.

KATE I mean it’s an important concession so, you know, thank

goodness they’ve got that because otherwise you’d get to

Dubai and you’d think well, what’s the point? Over I go.

SIMON It’s so hot here, they’d say. The expats I met, it is so geared

for tourism they’re realising they’ve got to get it right, and

so that’s why it’s becoming accessible, it’s not legislation,

it’s because of the visitors who are coming are demanding

something’s done.

KATE Is that the purple pound working its way in?

SIMON I guess.

KATE The purple pound being the disabled pound because we’ve

somehow commandeered the colour purple.

SIMON Yes.

KATE So people are sort of thinking actually disabled people

equals a little bit more money?

SIMON That is part of it. Don’t forget there’s also the sort of

western influence, there’s places like Shake Shack, the

burger chain, IHOP, there’s a whole load of western hotels,

they do that by default and that starts spreading. The irony

was the dropped kerbs were fine, outside my hotel they had

made a little ramp, it was a 45 degree, there was just no

way you could use it. So they kept telling me, “Use that,

use that,” and I said, “No, the dropped kerb is the natural,

that’s the better one.” So I was pleased and surprised I

could go out and do things on my own for the first time.

KATE And did you choose a hotel based on accessibility because

you knew it was going to be difficult?

SIMON No of course, I went with my family, particularly my sister

and it was only after she’d booked it all, I said, “Did you

check accessibility?” and she went, “Oh no, I didn’t think

of that.” She said, “It’s near the beach though.” You know,

that’s what family do, this might come up a bit later on,

they tend to forget your needs as long as they’ve got a

good deal and a nice hotel.

KATE I’d like to say that’s not true in my family but sometimes it

is. ((laughs))

SIMON That’s kind of sometimes what families do, they still forget

that and you have to remind them.

KATE But in a way that’s quite nice because they just, you know,

it’s like they see you as just a part of the family.

SIMON And as long as I stay in my room because I can’t go

anywhere. No…

KATE No, because they wouldn’t want to socialise with you so

that’s their way of just telling you that.

SIMON Yeah. I shared a room with my 20 year old nephew, well

he’s nearly 20 and my sister, there’s three of us.

KATE You shared a room with them?

SIMON A tiny room. Oh Kate…

KATE Were you too tight to get your own?

SIMON There’s lots of complications and changes of people

coming and going and so on so it just ended up like that.

The bit that made me laugh was in the first or second night

or whatever, we had a WhatsApp group for all of us and

the three of us were texting each other laying on beds next

to each other. I said, “Can we not talk?”

KATE Oh you’re so old Simon, that’s how the youth today…

SIMON I knew you were going to say that, you just looked away.

KATE That’s how we all communicate, you wouldn’t understand

it.

SIMON Even you would have done the same. I know it’s an old

fogey thing to say but nevertheless, the three of us laying

next to each other texting.

KATE All right, well as interesting as your holiday is we have got

a show to do and it’s not all about you I’m afraid.

Shocking.

SIMON Yeah. Well shall we say hello to our guests then?

KATE Yeah, let’s say hello to the guests then.

SIMON In our Salford studio it’s Heather Lacey. Hello?

HEATHER Hello.

SIMON And you’re here to do our social media roundup a little bit

later.

HEATHER Yeah.

SIMON But right now you’re the person behind the No Superhero

blog. What do you blog about?

HEATHER So the main thrust of my blog really is disability and

mental health but it’s kind of expanded into a bit of

lifestyle as well so there’s a good mix there. But yeah, it’s

really fun to do, I love my social media so it’s a nice way

to get things done.

KATE Well you’re the perfect person to be doing our social media

roundup really.

HEATHER Hopefully, yeah.

KATE But in the meantime we’ve got a bit of a first. And I’m not

going to say it’s a first in a good way, you know some

people are like, “We’ve got a first, it’s a world exclusive

play, we’ll play his new single,” no, no, not for us, in a first

our producer was a bit lazy this weekend, I think he had a

party to go to or something, so we don’t have enough stuff

to fill the show.

SIMON No music either.

KATE There’s no music, there’s no guest…

SIMON We have got guests.

KATE We’ve got two guests, we normally have three, we’ve only

got the one, so instead he’s now on sort of like a, well he

and the Ouch team are on a ‘Challenge Anneka’ style

mission, they have been tasked with coming up with an

item for the end of the show, no idea what it’s going to be

but I mean it’s quite exciting.

SIMON Damon, our editor, was on ‘Challenge Anneka’ as a kid.

KATE Are you kidding me?

SIMON He just told me.

KATE That’s incredible. Okay, apparently that’s a story for

another day, disappointingly.

SIMON A long, long, way away.

KATE But yeah, so hopefully we’ll have something coming up at

the end of the show, but you know, who knows what it’s

going to be?

SIMON If necessary we’ll talk about Dubai again.

KATE Exactly, let’s talk more about your blinging holiday shall

we?

SIMON So we’re going to begin by talking to a guest who we’ve

got in the studio in front of us. Hello Laura?

LAURA Hello.

SIMON So it’s Laura Smith. We did an item about disabled

siblings about this time last year.

KATE We did, just before Christmas wasn’t it.

SIMON Thank you. And we thought it was something that we

should return to. We found you via an organisation called

Sibs, that’s S.I.B.S and the name probably explains itself,

it’s an organisation for siblings of disabled people, you’re a

supporter and a former trustee. Sibs say there’s over half a

million young siblings and at least 1.7 million adult

siblings in the UK who’ve grown up with a disabled

brother or sister. We’re going to come back to them a little

bit later on no doubt but I want to get into your story. We

don’t often hear these stories and I think listeners might be

surprised, they might be enlightened, so let’s start at the

beginning. You’re 33, you’ve got a disabled sister who’s

31, tell us a bit about her.

LAURA So Katie is severely autistic so she’s non-verbal, she has

some behavioural challenges and she’s also epileptic but

over the years her epilepsy has got worse and worse which

is causing some medical challenges for her. She uses PECS

symbols to communicate and she also does…

SIMON What’s PECS symbols?

LAURA So it’s basically just symbols that have words on them and

a picture so that if she wants a drink or if she wants an

orange squash or something she could use those symbols to

express herself. She does a little bit of Makaton to explain

herself but she kind of puts her own twist on it, so not

everybody would recognise it as official Makaton but

growing up with her over the years obviously myself and

my family and our friends, we know what she’s trying to

communicate most of the time. She doesn’t have any

physical disabilities so she does have mobility but like a lot

of people like Katie she is very overweight, she’s on a lot

of medication, including steroids which can really sort of

have an implication on her weight.

KATE Now I guess before we go much further with this, you had

to have a conversation before you came on the programme

today because you wanted to make sure that it was all okay

with your parents to be discussing this. Have you talked to

your parents about your feelings about growing up with

Katie and the things we’re going to be talking about today?

Have you had that conversation before and how did it go

saying I’m going to go on a BBC talk show and talk about

it?

LAURA Yeah, I think for a lot of siblings talking publicly about

your experience of growing up with someone like Katie

can be very challenging and it’s quite personal naturally. I

think also because you’re talking about your disabled

sibling but you’re also talking about your family life. I

think consent for siblings can be a bit of a challenge so I

was really upfront with my parents and said, “You know,

this opportunity has come up, I’d like to go on and talk

about it, are you both comfortable with that?” And they

said, “Yes we are,” but the fact that I have to go through

those steps I think highlights why it is quite challenging for

siblings to come out publicly and talk about some of their

experiences.

SIMON I mean you wrote a blog a year or two ago, and we’ve

asked you, we found you, this wasn’t you saying I want to

come and talk, this was us asking you because we thought

it was really interesting.

LAURA Yeah, that’s right.

SIMON And maybe we need to ask permission in that are there any

sort of no-go boundaries or can we ask you whatever we

want to ask? Or if we ask you something a bit, you can just

go no, I’m not going to answer that.

LAURA No, there’s no no-go boundaries, I’m a pretty sort of open

person anyway and pretty honest and I think it’s nice to

have the opportunity to come and talk about these things,

you kind of yourself don’t know how interesting or how

helpful it would be but if it is helpful for other siblings then

it’s something that I’m really happy to talk about.

KATE So what was it like growing up with Katie then? What did

you find were some of the good points but also the

challenges of growing up with her?

LAURA Well I think for me growing up with Katie has been

amazing and it sounds really cheesy but she’s completely

shaped me as a person and I think a lot of the qualities that

I have a person, so really enjoying getting to know people,

being talkative and being patient and tolerant and not

judging people in any way, shape or form when I meet

them is as a direct result of growing up with Katie.

So there are huge amounts of positives and you were

talking earlier about a normal typical sibling relationship,

you know, Katie and I have got that, she might not speak

and she might have learning disabilities but we still fight

over who gets the rest of the roast potatoes on a Sunday

lunch or who gets the front seat in the car or who gets to sit

somewhere in the lounge, we still have that normal sibling

relationship. But I think growing up as a child to start with

you don’t know that anything’s different, it’s only when

you start going to school or socialising with friends and

you kind of go back to their house for tea and you kind of

go oh okay, this set up’s a bit different to my setup at

home. So Katie and I have always been very close, we

shared a bedroom, we used to go everywhere together.

SIMON Are you living together now or where is everybody?

LAURA So I actually live round the corner from Katie, so Katie

lives in independent provision and I’ve moved from

London to be close to her so she’s literally a five minute

walk away from me because I do like to be close to her and

to be able to see her as much as I can. But I guess the kind

of tough things about growing up with Katie were people’s

reactions. I remember sort of if we’d go out into town and

Kate might throw a wobbly and she might have been really

upset about something or making noises or rocking, it was

having to manage people’s reactions from a really young

age which was really difficult when you’re growing up in

those formative years. And I found myself just kind of

going up to people and going, “Oh, she’s autistic, that

means this and maybe next time you won’t say that to

somebody.” And I guess a little kind of campaigner kind of

started right from those early years because I was so

fiercely protective of my sister.

KATE And you were sort of talking then about going to other

people’s homes, your friend’s houses for tea and stuff like

that, how did that differ? What did you see as different?

LAURA It was a lot calmer, so obviously every family has their ups

and downs, they have their challenges, their good

moments, their bad moments, but for me having dinner

was challenging with Katie, she might not sit at the table or

she might have thrown her food around, she might have

eaten really quickly, she might have had a wobbly and

everybody had to leave the table so I might have been sat

there on my own eating. And it was chaotic and in some

ways it felt completely normal for it to be quite chaotic but

I think when I went to other people’s I noticed they had

more time to sit and talk.

SIMON And this was something - a quick apology, I may cough

occasionally, I’m trying to keep it away from the mic - but

that was something that struck me, that part of sitting

round the table as a family and talking and we know we

don’t do it like we used to do it 30 or 40 years ago but it

still happens and particularly maybe on a Sunday and not

to have that part just sounds very difficult.

LAURA Yeah, and I remember sort of trying to do my homework

from home and I remember it being normal that Katie

would have drawn on it or she might have ripped it or

Mum might say to me, “You know that book, your art

book? Katie’s put it in her bag, but we can’t take it out

because she’s going to headbutt us.” And it’s kind of like

okay, that’s my schoolwork, you know, I’ve got to submit

that tomorrow. So things about learning at times were quite

hard because if Katie had a bad night I would have a bad

night, so I would be going into school a bit sleep deprived,

and I think some of this stuff is quite common for siblings

but it’s not really talked about or I don’t think recognised

in schools or in early years settings.

SIMON So three days into the holiday I had with my family my

sister, we’re waiting in the lift and we’re on the 17th floor,

and my sister said, “Oh, I spend half my life waiting for

lifts when I’m with you.” And I said, “Well take the stairs

then.” So there was that little bit of… So this is a long way

of me saying you sound saintly, you sound remarkably

saintly. Did you not ever kind of go, for crying out loud,

what about me, or this is my work, or this is my…? I’m

being almost disabled by my sister. You sound incredibly

good.

LAURA Well it’s really funny that you say that because I asked my

mum exactly that question, I was like, “But Mum, didn’t I

throw my toys out the pram or have a wobbly or didn’t I

say horrible things to you or didn’t I resent Katie when I

was little?” And she said, “No,” she said, “the sad thing

about it Laura is that you just completely accepted from the

age of three that there was someone in your life who was

always going to be more important and their needs were

always going to need to come first.” And she said, “That

makes me quite sad really that you didn’t throw those

wobblies.” But actually as I’ve got older I think I found it

harder and I think a lot of siblings maybe as they get older

and start to process a bit more about how they grew up or it

might be some sort of trigger like a relationship or a

breakdown, that kind of makes you look back as well as

forward.

KATE Yeah. How has it impacted your life now do you think?

LAURA Well, it impacts a huge amount really because I’m

choosing to live close to my sister so I can help out with

her care.

SIMON But you work and you run your own business and so on.

LAURA I do, exactly. So the positives about that is I can maybe

build that around my schedule rather than having to be

somewhere at eight and not being allowed to leave until

six, there might be a little bit more flexibility. I’m very

involved in sort of Katie’s care, so kind of engaging with

social workers and her care team the challenging behaviour

unit that we have for Kate.

So I take quite a hands-on approach and I have to juggle

that and have to fit that in with my business and my friends

and any relationship I might be in, there’s lots that I have

to make work, but for me as a sibling I’ve chosen to be

very involved and not everybody might make that choice.

But it’s only me and Katie, there’s no one else, so we don’t

have another brother or sister so if I don’t support I kind of

feel like there’s no one else to pick up the reins, if that

makes sense?

KATE You don’t have a mum or dad?

LAURA So my mum and my dad are involved, my mum and dad

divorced when I was 18 and I think it’s really common that

families who have got a disabled person like Katie with a

learning disability or autism do often divorce because it’s

very stressful. So I do have them but my dad doesn’t live

close by and my mum’s under an incredible amount of

physical and mental stress as a result of being a carer for

29 years.

SIMON There’s some real depth in the one about you being the

one. I want to just bring in Heather for a moment because

Heather, you’ve got a non-disabled twin brother?

HEATHER Yeah, that’s right.

SIMON Is anything that Laura’s saying echoing or are you very

different? Where are you at?

HEATHER Yeah, well there’s certain aspects of what you’ve said with

regards to, you know you were saying you’re quite

accepting of things, I remember, it was fairly recently

actually, my brother kind of turned round to my mum and

said he felt quite guilty actually that I was kind of affected

by things that he wasn’t affected by because I have a lot of

chronic pain with my condition.

SIMON What is your…?

KATE So what…? Sorry, we’re both trying to jump in to find out

what your disability is.

HEATHER Yeah, so I have mild cerebral palsy, so hemiparesis, it’s a

bit like a stroke I guess, and I also have a spinal condition

as a result of that.

KATE So how do you think that impacts on your brother then?

HEATHER Well he’s had to kind of deal with me going to a lot of

hospital appointments and things like that, particularly

when I was diagnosed with the spinal condition, I was in a

brace for a while and we were thinking about surgery and

whatnot. But he’s always said, “I wish I could take the pain

away, I wish I could kind of shoulder that burden for you.”

And so I think for him it’s more that he doesn’t know how

to help me, he’d quite like to help me but he feels a bit lost

in a way. And what I would like is for him not to feel so

bad about it really, you know, he has no control over what

happens kind of to my body, as long as he’s kind of

supportive of me that’s all he can do and I’m really

grateful about that.

KATE So Laura, I mean if Katie could speak to you what do you

think she’d be saying? Do you think she’d say go out, have

a life, get on with stuff, or do you think she’d be saying no,

stay with me, look after me?

LAURA I think she probably would be saying get on with things,

don’t think about things too much, enjoy your life, so I try

and always remember that because I don’t want to live my

life like some saint that’s kind of moved my identity over

to my sister’s, but I think because obviously Katie’s needs

are so severe I guess I do feel that responsibility and I think

a bit of guilt because we obviously come from the same

gene pool and yet I’m very blessed to just be typical.

You know, I’m not perfect, I’ve got my problems, I’ve got

X, Y and Z going on but actually I can talk, I can express

myself and she can’t and I think for me I’ve carried that for

my life, I just want to make her life happier in any way that

I can really. And it gets harder for people like Katie as they

age in the system and go into independent living provision

or residential care or whatever it might be, it’s really tough

for them. So I guess if I can make her smile as much as I

can in the week I want to do that, it makes me happy.

SIMON You mentioned sort of the relationship bit and they’ve got

to understand you may have to drop everything. It reminds

me, have you seen the film, ‘Love Actually’ where there’s

that…?

LAURA Yes.

SIMON Oh okay, and what about maybe one day you want children

How do you feel about all the relationships, your sister,

children?

LAURA Yeah, it’s a really interesting one because it’s something

that I’m kind of thinking about a lot at the moment, so I

recently came out of a seven year relationship and I did

find it quite hard because before they even put a ring on

your finger I kind of find myself thinking well, can they

handle a life with my sister? What would happen if there

was a crisis and my sister had to move into a home? What

if we had kids and I was struggling to be a good mum

because I was distracted by my relationship with Katie?

And it kind of puts a lot of pressure on, like in the early

stages in a relationship where you’re just wanting to be

having fun, you’re kind of thinking about stuff that you

might not otherwise need to think about.

And I mean the having kids question is a really interesting

one for me because if you’d have asked me in my 20s I

would have said, oh absolutely, I feel really maternal, I’d

love to have children, but in my 30s I guess I know a little

bit more about my life with Katie and what that’s going to

look like in the future. I also quite frankly worry about

having an autistic child myself or a child with any kind of

disability and there’s quite a lot of research coming out at

the moment that’s mentioning genetic factors and that’s

kind of creating quite a feeling of sort of anxiety in me

about whether that’s something I could or should do, and

yet I don’t really have many people to talk to about that. So

I guess that’s why an organisation like Sibs that you

mentioned earlier Simon is really important because you

can talk to peers and you can find a way to sort of say look,

I’m feeling this, do you feel this as well?

KATE And do you have help? Do you have somebody that you go

and talk to on a regular basis?

LAURA Well growing up, no not really but as an adult I have

chosen to speak to somebody once a week, so I’ve

basically found a counsellor that kind of specialises in

family and transition and things like that and I just kind of

decided that I needed to find a way to express some of

these concerns, I didn’t really want to sort of burden my

mum or my dad with them and maybe some of my friends,

I didn’t want to go into too many details, but I found that

really helpful.

But the other thing that I’ve done is, via Sibs, they’ve

started developing support groups, so when I was living in

London I went to the one in London which was really

helpful every month and I’m just about to go to one in

Brighton. And I think that was a really good way to kind of

talk to people, they just got it, you know, you didn’t have

to over explain yourself, they just got the things that you

said because they were in exactly the same position as you.

SIMON And did you find any…? I mean I agree with you and I

love it when you find that commonality, did you have any

tips or things that someone did differently you thought, I

should do that?

LAURA I think the biggest thing that I found really helpful is when

somebody said, “Well, have you downloaded this guide?

This guide is really helpful in terms of thinking about the

future?” Or, “Have you read this article about genetics, that

might help you think about this?” And there’s that kind of

sharing of information and ideas and resources, but we

actually do have a dearth of that so for siblings in

particular there isn’t that much information out there. I

mean obviously there’s the Sibs website and there’s a

couple of other areas, but really for someone like me at my

age to find information I have to really search for it. So if

you find yourself in a crisis, so if my mum, heaven forbid,

dropped down dead tomorrow, in a crisis I would be

having to get a huge amount of information about what the

impact was going to be on my sibling and also on myself.

KATE You were talking about the relationship that you were in.

Do you think having an autistic sister led to the breakdown

of that relationship?

LAURA I think probably not, I think there were some

incompatibility things that probably ultimately did, but I

think I got scared if I’m honest, I think I kind of ran away

from the relationship because I was worrying about the

future. And because I hadn’t really had any people to kind

of talk to and work it through with I think I just had to take

myself away to get some space to kind of really process

that and I hope that if I find myself in a relationship again

in the future that I’ll be a lot stronger about kind of

expressing myself and saying look, these are the things that

I might need to think about in the future, whereas I felt in

that last relationship it was just coming down on my head

and I wasn’t really able to process it very easily.

SIMON And do you think it was almost you don’t want to burden

somebody else with, and forgive my language, but it’s

almost something that you feel that you’ve got to carry and

you didn’t want someone else to have this as well?

LAURA 100%. And I think that was what made the breakup so hard

because I loved this person very much but I was worried

about them having to have that life. I mean there are lots of

positives.

KATE It’s awful to think that, that having a sister like Katie is

contributing to the breakup of an incredibly important

relationship in your life. That’s heart-breaking isn’t it?

SIMON And also there’s what I’m sensing from you is that word

about duty; this is your sister, she’s number one, I’ve got to

be there. And I totally get that, I understand it, and when I

was ill recently my sister did help me a lot, so I’m flippant.

What did your boyfriend say? Because if I was the

boyfriend I’d say I’m okay with that, we have a good

relationship, don’t finish with me because of your sister, I

can take that on.

LAURA Yeah, I mean I think if I’m honest I think that’s what I

struggled to talk about, so I think perhaps if I’d have

processed things a little bit earlier and I think perhaps if

I… I mean I think I was really struggling at the time

because Katie had moved out of home, the transition was

very difficult, we were in hospital a lot with her, like she

was having fits and dislocating parts of her body and I

think we were in a process of crisis and I think I was just

struggling to find the head space to actually talk about that

in a relationship.

But I do think if we could get a bit better in terms of being

preventative, so if we could start having siblings talking a

lot younger and connecting with each other and being able

to access information perhaps adults wouldn’t be reaching

their 30s and 40s and having maybe, I don’t know what to

call it, a little mini midlife crisis about the Porsche, perhaps

that might be the way to go so that more siblings feel

empowered.

KATE What do you wish had been there for you when you were

growing up?

LAURA I really wish that there had been more understanding about

what was going on at home so that when I was learning if I

was having a bad day, if I hadn’t had much sleep my

teachers had a little bit more understanding about what was

going on. The same with doctors actually, so if I was

experiencing any sort of periods of concern or depression

there was somebody that was kind of like, okay she’s a

sibling therefore there’s these things going on. I think I

wish that I had consistently attended a sibling support

group so I had those friendships. I mean obviously I’m

always going to have other friendships as well but just to

have that group of people that you can talk to I think would

have been really beneficial for me.

SIMON So when you go to Sibs now do you occasionally come

across a chap and think oh he’s going to get it because he’s

got a sibling? Are they more compatible?

KATE Are you saying is Sibs basically a dating support charity?

SIMON Every cloud.

LAURA Do you know what? There is this part of you that kind of

thinks that they would really get it.

SIMON Exactly, exactly.

LAURA It’s like what you guys said earlier, life’s about so much

more than that and I have an identity that is, you know, like

I have things that are my problems that are completely not

about having a disabled sister like Katie, so compatibility’s

compatibility but you do need somebody to get it and to

support you for the rest of your life, otherwise it’s not

going to be an easy ride.

SIMON And not in a competitive way, “Hang on, I’ve got to go for

my sister.” “No, no, no, mine’s more important.”

LAURA Exactly!

SIMON I can’t see you for six months because I’m so busy.

LAURA Yeah, exactly. And I do think every sibling is different, so

the fact that I’ve chosen to be a bit more involved, I

wouldn’t judge a sibling that has chosen not to be as

involved, I think it’s a very, very personal choice.

SIMON And I also think… It’s clumsy, but the impairment stuff

and the nature of it and in your family there’s a ton of

things that are all involved in that, yeah.

LAURA Absolutely. Families are intrinsically complicated,

wonderful, weird, brilliant, you know, that’s family life

without having somebody that has a disability. And there’s

huge amounts of positives over the years, I think for me I

just think I’ve realised that some of the things that I

struggle with are things that I should have processed and

dealt with a long time ago.

SIMON What I’m very happy about though is one, you’ve come on

the show, but two, that you do now have someone. And the

bit I love about counselling and all that stuff is you’ve got

an hour a week, it’s your time, no one’s judging you, you

can say what the hell you want and it’s that time to work it

through. That sounds great, really good.

LAURA Exactly.

KATE That was absolutely fascinating Laura, thank you so much.

LAURA Well, thank you for having me on.

SIMON You’re going to stick around.

KATE You’re going to stick around obviously, but I’m just

getting told in my ear that again, ‘Challenge Anneka’

styley, we’re having to throw the plans into the air…

SIMON We don’t have plans. Do we have plans?

KATE …because all of a sudden we’ve got somebody in our

Edinburgh studio that wants to talk to us. So Heather, can

we just hold on, we were meant to come to you for social

media news, we’re now not going to.

HEATHER Of course.

KATE We will be back with you shortly, but apparently we’ve got

Emma in the studio in Edinburgh. Emma?

EMMA Hello, how are you?

KATE Hi. How was your helicopter?

EMMA Er… okay?

SIMON ‘Challenge Anneka’. How’s your bottom?

EMMA Oh! Oh sorry, my helicopter. Fantastic. Yeah, I love

helicopters.

KATE Good, good. I mean we’ve heard that you have been

rummaging around in people’s handbags. I mean I don’t

really know what’s going on.

SIMON Rucksacks?

KATE Is this allowed at the BBC?

EMMA Well, I would imagine if people know me well they

wouldn’t be surprised that I’ve been rummaging around in

people’s bags, I’m pretty nosy.

SIMON This is very last minute isn’t it? So we don’t know what’s

happening.

KATE Yes, so what’s going on?

EMMA Yeah, well last week I saw a tweet from Kate Ansell who

some of you might know, she’s a TV producer, but she was

saying that she was bringing a wooden spoon to work, and

she tagged it ‘cerebral palsy problems’. And it turned out

that she was bringing a wooden spoon to work with her

because her boots were quite tight and due to her cerebral

palsy she has an unusual gait and feet that end up at odd

angles. So she was bringing the wooden spoon so that she

could pop it down the back of her heel of her boot,

between her heel and her foot to give her more room to

reposition the wayward foot in her boot.

KATE Why couldn’t she use a shoehorn?

EMMA Well, I don’t really know but I guess they’re harder to

come by.

SIMON That’s not the point of the item.

KATE Oh sorry. Oh a wooden spoon? How fascinating.

SIMON Yeah!

EMMA They’re harder to come by I guess and actually as it turned

out she broke the spoon in the process of doing what she

was doing. But it got me thinking, so I started to have a

virtual nosy in people’s bags and I asked all of our

Facebook and Twitter what unusual things disabled people

carry around with them for disability related reasons and I

got quite a number of interesting ones. So I’ve brought…

I’ve also got someone else to help me because obviously

‘Challenge Anneka’ style I’ve been bringing in favours all

over the place this morning.

KATE Excellent.

EMMA And I’ve got our favourite disabled occupational therapist

on the line.

KATE Ah, our favourite one.

EMMA Elizabeth Hodge. She’s been on Ouch before, she was on

the Ouch News section.

KATE Yes, she was our correspondent for a bit wasn’t she?

EMMA Yes, so say hi to Elizabeth.

KATE Hi Elizabeth, how are you doing?

ELIZABETH Hi everyone, I’m well thank you.

EMMA Good. Good to hear from you again.

EMMA I just thought it would be good to have an OT perspective

on some of these. Now, I was going to do a little quiz with

you guys.

SIMON Oh!

EMMA So I’ve got a list of things that disabled people have been

carrying around with them on their person, keeping handy

just in case.

SIMON And what have we got to guess? The impairment? What

are we guessing?

EMMA You’ve got to guess why they’re carrying them.

SIMON Oh, okay.

KATE Okay.

EMMA Okay? So I’m going to say the item, you say why they

might have them.

SIMON Is it fingers on buzzers? How are we going to do this?

EMMA Just shout, just shout. There’s no prizes here I’m afraid, it’s

all for fun, okay. So the first one is a tennis ball.

SIMON Oh, stress. Squeeze it for stress.

HEATHER Yeah, I’d say stress as well.

EMMA Uh-uh.

KATE No, you’ve got stress balls for that.

EMMA What do you think Kate?

KATE I would say…

SIMON Draw a little face on it and make it a little puppet like a

comfort toy.

KATE A bit like Wilson in the Tom Hanks film.

SIMON Yeah, and Del and Tilley.

KATE Yeah. No, I’d say something like roll your back or

something so you can roll up and down the wall.

HEATHER Oh, that’s a good idea, yeah.

EMMA That is actually pretty much true.

KATE Yes!

SIMON Very good Katie, Katie tweets.

EMMA Yay, well done both of you. I’ll give Heather a part of that

as well because I think she was kind of on the way there.

SIMON You should see the smile Kate’s got. She’s so jumped.

EMMA Yeah.

SIMON Laura, you’re playing as well aren’t you? Shout in.

LAURA I was thinking, you know, throw it to somebody, if you

want to start a chat throw the ball.

SIMON Oh yeah, yeah.

LAURA That’s one way to get their attention.

KATE Hit them on the head.

SIMON Wake them up.

EMMA That’s a good one. I would probably break a window if I

did that. Yes, so my friend Mike who wants to remain as

anonymous as that has one under his desk at work because

it’s his feet that are often the trouble, he’s got muscle and

skeletal pain and he carries one in his bag as well. And if

his kids don’t take them and play with them they last for

absolutely ages and they’re very handy. So that was a good

one.

KATE Excellent. One nil to Kate, just putting that out there.

EMMA Elizabeth, would you recommend to carry things like that

around? Tennis balls?

ELIZABETH Yeah, definitely, in fact that tennis ball one is something

I’ve personally used myself to relieve muscle pain and it’s

really effective, so I think that’s a great use. And I guess

it’s also handy maybe if you have a guide dog, I don’t

know, if you throw balls for those. But I guess there’s

other uses for a tennis ball and I know that people

sometimes can cut a hole in them and use them to make a

switch or something larger if they can’t grasp it. So yeah, I

think tennis balls are really versatile.

EMMA Oh, so they might use it, like attach it to a light switch or

something and be able to pull it, have something big to

grab?

ELIZABETH Potentially or even more like a joystick control perhaps on

a wheelchair or something like that, it makes the end of it

much easier to grasp.

EMMA Okay, so the take away from this I think is that every

disabled person should basically carry a tennis ball.

HEATHER Should carry a tennis ball.

EMMA Yeah, absolutely.

KATE Well I’m off to the shops after this.

EMMA Okay, next one. A bottle.

SIMON Mm-mm.

EMMA Simon?

SIMON Well, it could be the same, to roll their foot on. So it’s

obviously not what it’s meant to be used for, that’s the

point of it. So roll their foot on it…

KATE Empty a catheter bag into it?

SIMON Put a little message in it and throw it across the office?

Communication.

EMMA Anything from the visiting guests?

SIMON Laura? Heather?

LAURA What was it again?

KATE A bottle.

LAURA A bottle.

HEATHER The only thing that I use a bottle for literally is to carry

water, so I don’t know.

EMMA Well Kate again, Kate wins again.

KATE Yes! Yes!

EMMA Not quite. Half a point I’m going to say.

KATE Oh!

EMMA Because it’s not to empty your catheter in, it’s to actually

go straight into.

KATE Oh, okay fair dos. If you’re a boy I assume.

EMMA Yeah, exactly, I know.

SIMON Well if you have a funnel as well. ((laughs))

EMMA Boys are lucky that way. And I didn’t really think about it,

I hadn’t thought about this, obviously you guys hadn’t

really…

KATE ((laughs)) Can we just go back to the funnel just for a

second?

SIMON I just want to see if it stays in.

KATE How do you think that works?

SIMON I don’t, this is my Minty moment when I say something

really embarrassing every month which has been

happening, Growler.

KATE So if you’re a girl take your funnel and your bottle with

you.

SIMON As well as your bottle, that’s all I’m saying.

KATE On the go, anywhere. Sorry Emma?

EMMA No, that’s fine. It’s for people basically who do have

bladder control but who need assistance to transfer from

chair to loo and as one disabled man told me during the

week, “I’m not going to transfer for that,” because

obviously guys don’t need to.

KATE Can’t be bothered.

SIMON Too much, yeah.

EMMA So they’re still going into the bathroom and they’ve still

got a PA helping but it’s going into a bottle, not, you

know, they’re not going through the whole transferring

thing, so it’s very sensible really. And one of the guys I

talked to, Rob, who’s got a Facebook group called Access

Adviser, which if you want to look at it he’s been telling

me to push that all week, he leaves one in the toilets at

work, leaves his bottle there, so everybody knows it’s

there. And actually it’s the difference between him needing

PAs all day, every day and instead someone pops in a

couple of times a day to give him a hand to go to the loo

and he just does it in the bottle and off he goes.

KATE Okay so Emma, two more. Give us your best two. What’s

the next one?

SIMON Please someone get this right and not Katie Katie.

KATE Yes, me again.

EMMA Okay, so Elizabeth knows this one so she’s not in this one

because she was the one who came up with it. Cold

teabags.

SIMON Puffy eyes.

EMMA No.

SIMON It’s too obvious?

EMMA Heather? What do you think?

HEATHER So do you mean like used teabags that are cold? Is that

what you mean?

EMMA I guess they can be used or unused, as long as they’re cold

and yes, are wet. Yes, wet teabags.

HEATHER I don’t know. As Simon said, I would have said for puffy

eyes but that’s too obvious.

SIMON Laura, you’re shaking your head.

LAURA I would have said the same. Under eye bags.

SIMON Can you give us a clue to the impairment type Emma?

EMMA Well, I’m going to throw to Elizabeth on this one because

she’s the one who came up with it.

ELIZABETH This one was actually recommended by a consultant and it

was a new one on me but cold teabags can actually be

really helpful for people who have nerve pain, no matter

where that is and so a lot of people carry them round in

their handbag and apply them to the affected area to get

pain relief. And it’s actually the tannin in the teabags that

is kind of the active ingredient. So it’s a little bit strange

but probably a lot better than having to take prescription

medications and actually often more receptive.

KATE I wouldn’t put it in the funnel though. Don’t do that. So

where do you put them? Do you put them on the bit that

hurts?

ELIZABETH Yes.

SIMON But under your clothes?

ELIZABETH You’ve got to have a sort of watertight container to keep

them in, but yes, so it does look a little bit odd I guess.

KATE A watertight container to keep… What? So…

SIMON To carry them in.

KATE Oh, to carry them in, okay.

SIMON But say my knees are playing up do I take my trousers off

and then just put them on? Do I put them under…

KATE Yes, make yourself a cup of tea, sit down, pop the teabag

out of the cup onto your knee.

EMMA But it would have to be cold though.

ELIZABETH I wouldn’t advise doing it when they’re hot but no, cold

teabags are good for that.

KATE Oh, then you’ve got the combination of the tannin and the

heat. It’s always good to have a bit of heat on a sore joint.

SIMON Kate’s going for the bonus point. But I don’t know, it

sounds a little… I mean if it’s your wrist, fine, but if it’s

another part of your body you’re going to get it all over

your clothes.

KATE Okay. Quickly Emma, what’s the next part, because

Damon’s shouting in my ear that ‘Challenge Anneka’ is

almost finished.

SIMON That was a move on, yeah.

EMMA Oh okay. Well, the last one is more of a test to see if you

listened to our last podcast. Did you?

SIMON No.

EMMA To the last short podcast?

SIMON No. We only present it don’t we?

KATE Of course, definitely did… but my memory’s so bad that

maybe I’ll forget.

EMMA Okay Kate, pen and paper.

SIMON Pen and paper.

KATE Pen and paper. Okay, got a pen and paper, yeah. Oh. Pen

and paper, what do we…?

EMMA No, people carrying it round with them.

KATE People carrying round pen and paper. I mean there’s so

many reasons for that. I think Simon carries it for when

he’s bored, he does doodles.

SIMON Yes, stress, people do it as a sort of absent minded stress

thing.

EMMA Heather?

HEATHER I actually carry a pen and paper for documenting if I have

triggers for anxiety.

EMMA Ah.

LAURA That’s what I do.

EMMA You see, there are multiple uses for these things, I think if

we stayed here and talked about this for a while we could

figure out a reason why any disabled person would carry a

pen and paper.

SIMON We’ve got to fill some time, but not that much.

KATE Deaf people, yeah, could be writing things down.

EMMA That’s a sensible one.

KATE Laura, do you carry around a pen and paper with you?

LAURA Yeah I do, I’m constantly doodling or writing notes to

people, so yeah, I always have pen and paper.

KATE I would say it’s something to do with writing down your

medication…

SIMON Oh, here we go.

KATE …or writing down your condition so people know it.

EMMA Well no.

SIMON Oh!

EMMA So nobody listened to that last podcast.

KATE Damn it.

EMMA Because we had Helen Purves on who has non-convulsive

epilepsy and she carries a pen and paper with her so that

when she has a seizure her colleagues sit her down at a

table, give her a pen and her paper and scribbling and just

watching the ink coming from the pen to the paper sort of

helps her get through her seizure, otherwise she’d be

wandering around confused, talking no sense, whereas this

sort of focuses her and helps her through the seizure.

SIMON Yeah, focus. Just for clarity now I realise, you’re talking

about the little, not the big monthly podcast we do, you’re

talking about the little ones in between.

EMMA Yes, I’m talking about the short podcast.

KATE The Ouch-lets. No.

SIMON I like that one.

KATE Ouch mini, Ouch things.

SIMON I told you I don’t feel very well but you’re really spaced

out today, it’s brilliant. You did get round the quiz though,

I’m not going to take that away from you.

KATE I got two on the quiz, I think that means that I’m the

winner once again.

SIMON Thank you Emma, I like this, it’s going to be a big thing,

you’re going to explore this further.

EMMA We will have a feature on the website. Yes, so if anybody

else has something unusual that they keep handy for

disability reasons please let us know on Facebook, on

Twitter @bbcouch. What’s the email again?

KATE Ouch@bbc.co.uk.

EMMA That’s the one.

KATE So Elizabeth, thank you so much for being here.

SIMON Thank you, Elizabeth.

KATE Always a joy to speak to you.

ELIZABETH You’re welcome, thank you everyone for having me on

again.

KATE Thank you. Heather, how are you doing?

HEATHER I’m good thank you.

KATE Now, you are our social media correspondent for the week.

HEATHER Yes, apparently so.

KATE Has there been much disability news going on in social

media land this week?

HEATHER Yeah, well I’m very interested in disability news all over

social media so I follow lots of different accounts that

discuss it, but there’s been several things I’ve kind of

picked up on really, particularly things that have gone

viral. So there’s a couple of hashtags that are quite

interesting to discuss.

KATE Okay, so what’s first on your list?

HEATHER Okay, so first. As you know in October it was World

Mental Health Day but there’s been a resurgence of the

hashtag, trigger warning, or TW tag. And the reason for

this is quite strange actually, I mean you see it floating

around social media anyway but…

KATE So what is a trigger warning tag?

HEATHER A trigger is something that might set someone into relapse

if they have a difficulty with their mental health, or if

they’re having a bad day it alerts people that, you know,

this item might have violence in it or it might have talkers.

Food, if someone struggles with eating disorders, so it

gives you a warning to kind of take care, look after your

mental health and know that there is something that is

potentially upsetting or distressing in the content. There’s

been a discussion around this because it’s quite a relevant

topic at the minute with regards to what’s shown on TV

and whether or not trigger warnings are useful.

SIMON Is this something to do with ‘Coronation Street’?

HEATHER Yes it is, so I don’t know if anyone’s a regular watcher of

‘Coronation Street’, I’m not personally but I’ve kind of

seen it floating around a little bit and there’s been quite a

big controversial story. And I know soaps do discuss quite

sensitive things and they all seem a bit ridiculous don’t

they, but the most…

KATE Yes, there’s a lot that goes on in one street, that’s for sure.

HEATHER Yeah, exactly, exactly. They always seem to be having the

worst luck don’t they?

KATE But what’s the specific one recently?

HEATHER So David Platt is a long running character, he’s been on the

Street for ages apparently, and what’s happened is there’s

been a really big issue with his wife being murdered and as

a result of this he’s kind of spiralled into depression, he’s

really struggling with bereavement and he knows who’s

killed his wife. So what he tries to do is murder this

murderer, so the issue is a double edged sword really,

you’ve got a murder which is very violent but you’ve also

got the issue of suicide. And the reason people have been

talking about this a lot is there was no kind of warning that

this is going to happen. It’s potentially triggering for

someone if they’ve had to deal with their own thoughts of

suicide.

SIMON You mentioned this a minute ago Heather, the sort of value

and I know occasionally at the beginning of a show we will

do it. I have seen contrary points of view which is kind of

you can’t cover every single trigger presumably, I mean

everybody’s got something so where’s the balance?

KATE Yes, because Heather just said earlier that food is a trigger

for some people and if you had to do a warning every time

you showed food on TV…

SIMON MasterChef. Great British Bake Off.

KATE Yeah, there’d be a lot of problems. Do we think trigger

warnings are helpful? Are they unhelpful? What’s the level

that they should come in?

HEATHER If you’d have asked me this a few years ago I might have

said they were a bit unnecessary and it’s a bit silly to kind

of trigger warning everything, because like you say, with

MasterChef you know you’re going to be watching food,

but there’s certain things that I think do need to be

discussed a little bit more, maybe suicide is one of them. It

affects quite a lot of people but it’s one of those things

people don’t really talk about and there isn’t always the

opportunity to discuss suicide and the feelings that

surround it. And having like my own experiences with

mental health and things like that, that would be something

that would be potentially triggering for me and it would be

quite useful to have a warning of that.

SIMON Is there the helpline at the end of the show?

HEATHER Yeah. I mean that is useful but if you think about it, you

know when some shows start and they’ll kind of warn you

about nudity or strong language, and that’s a very quick

thing to do isn’t it, having a helpline at the end is useful but

it’s not useful if you’ve had a complete relapse because of

the content that’s kind of come in before.

SIMON It’s after the fact.

KATE Yeah. Emma, what were you going to say?

EMMA I’ve seen instances where people have said that the words,

trigger warning, or the letters TW are triggering in

themselves.

HEATHER Exactly, yeah.

KATE Blimey.

EMMA So it kind of gets you on edge doesn’t it? It gets me on

edge when I see those words or those letters. So we don’t

tend to say the words, trigger warning, at the beginning of

the podcast, we just use our language to say why some

people might not want to listen further. Heather, is it more

useful to maybe say just use everyday language rather than

those words?

HEATHER No, I agree with you entirely.

SIMON Moving on Heather, there was another hashtag, I’m not a

junky. Do we need the drugs that are prescribed?

HEATHER Yes, this has been going on for a long time, but again this

was another thing that remerged on Twitter. There was a

programme called ‘The Doctor Who Gave Up Drugs’ and

it caused a really big fuss over social media. And I mean as

a person who, I take medication for my mental health

conditions and painkillers for my physical disabilities,

there’s kind of this narrative around medication shaming I

guess and particularly with mental health I think a lot of

people assume that medication is like the easy way out,

that it’s something that is kind of going to cure you of your

symptoms.

SIMON Is this what was implied in the programme? What was the

programme saying?

HEATHER So the programme followed Dr Chris Tulleken – I think

that’s how you pronounce his name.

KATE He was on BBC One in the last few weeks.

HEATHER It was, basically what he did is he got into a GP’s surgery

and he aimed to reduce the amounts of prescription

medication that doctors were issuing their patients, whether

that be antibiotics which is a slightly different matter or

antidepressants and painkillers and he wanted to kind of

reduce everyone’s intake of these things, but I thought

really his reporting of it was quite clumsy, it just didn’t

seem to kind of fit.

KATE So was he saying we shouldn’t all be on all the tablets that

we’re on?

HEATHER Yes.

SIMON Well there’s also quite a lot of research – by the way I take

painkillers – but there’s a lot of research that when you

take groups you can do blind studies and placebos will

have a good effect as well, so…

HEATHER Yeah there is. I mean I think my main issue with it is,

because I understand painkillers because I’m prescribed

quite a lot of them and I know they’re addictive and I know

you’ve got to be very careful but I think my main issue and

a lot of people’s main issue on Twitter was the

antidepressants, that kind of medication, where a lot of

people, you know we don’t talk about mental health as

much as we should and he was just perpetuating this

medication shaming thing. And when I started taking

medication myself I didn’t think it was the easy way out, I

knew it wouldn’t be.

SIMON What do you mean by the shaming bit? Are you saying that

you should be embarrassed if you’re taking medication,

that’s what they’re implying?

HEATHER That’s kind of what this, not embarrassed I guess, but

almost, you know, I think there’s this narrative around if

you take medication you’re kind of giving up, if that makes

sense. I know it’s been said to me with painkillers as well,

you know, you’re kind of giving in to the pain or you’re

giving into the symptoms of your mental illness.

KATE Blimey.

EMMA “Why don’t you try mindfulness?”

HEATHER Yeah, you get that all the time.

SIMON And if they’re taking it another way by saying there’s too

many antibiotics being prescribed, that means we’re not

having our own resistance or so many people are having

antidepressants now rather than alternative therapies, all of

that I could imagine but the idea… my surgeons or doctors

will say take it before you get the pain, it’s not meant to be

when you get the pain.

KATE Yeah, it’s make a barrier for the pain, that’s the thing isn’t

it?

HEATHER Yeah.

KATE It’s a tough one, I know my mum watched it and she’s on

all manner of tablets and she was like, “I’m going to give

them all up then, I think I should be…” and we all just

were like, “you are crackers, do not do that.”

SIMON Give them to me.

KATE Or just hand them over.

SIMON Nice. And the last one Heather which is ‘No Names in the

US’, a young boy with Down’s Syndrome.

HEATHER Oh yeah, so he’s called Asher Nash.

KATE That is a great name, Asher Nash.

HEATHER And what happened is, you might have seen this on

Facebook in particular, it went really viral over there, and

he has Down’s Syndrome, and his mother, Meagan, sent in

some pictures to a casting agency and he was rejected on

the grounds that the client didn’t specify they wanted

anyone with special needs.

SIMON Was it modelling, just to be pedantic?

HEATHER Yeah, modelling.

SIMON Okay, yeah.

HEATHER And rightly so I guess, she was outraged because they also

didn’t say we do want anyone with special needs and she

kind of thought why does this have to be specified in the

first place? So this was picked up by a group called

Changing the Face of Beauty and it was kind of discussed

on there. And there’s been some really interesting

responses to that.

KATE Like what? What kind of responses have people been

giving?

HEATHER Well I don’t know whether I’m just really cynical, I’m in

two minds about it, I mean it’s really useful obviously to

kind of discuss representation but I think the way people

maybe go about it isn’t necessarily helpful. There’s been a

lot of, you call it inspiration porn don’t you, where

disabled people are kind of treated in that manner and I

feel like it could be such a force for good but so many

people are kind of taking it completely the wrong way and

skewing everything and that’s where it just doesn’t sit right

with me really, I find it very uncomfortable.

SIMON Go back one step. What’s your problem with inspiration

porn? How would you describe inspirational porn?

HEATHER So inspiration porn is the idea that disabled people are an

inspiration to able-bodied people or the fact that someone

with a disability might have achieved something. So I can

achieve something else as well.

SIMON So it’s the Facebook memes that…

KATE ‘Mems’?

SIMON How do you pronounce it?

KATE Memes.

SIMON Memes, that kind of go, look at this person, despite

everything they’ve done that and despite this they’ve done

that.

HEATHER Yes, exactly.

SIMON Okay, and they’re pretty mundane.

HEATHER Yeah, and there’s also the idea that the only disability in

life is a bad attitude.

KATE Oh, don’t. Stop it.

HEATHER That’s one that’s like pushed around a lot and I don’t

know, I just find that…

SIMON I say that to Kate quite a lot.

EMMA And Heather, is it the fact that people are so outraged that

this little guy didn’t get a modelling deal because he’s

disabled? Is it the level of outrage that doesn’t sit right

with you, because it was hugely shared wasn’t it?

KATE I don’t think he didn’t get the modelling job, I think he

didn’t even get invited to the casting.

HEATHER Yes, he didn’t get a casting, that’s the thing.

EMMA So what is it that doesn’t sit with you? Is it the level of

outrage? Is it the how viral it’s gone?

HEATHER No, it’s not the outrage, it’s nothing to do with that, it’s

just the way it’s kind of been… you know, because

disabled people are always trying to fight to be included

and for everything to be inclusive but I feel like reacting to

something like this is further segregating the disabled

community because it’s further kind of creating a big

difference and I don’t know really where the line is to be

honest. Because obviously we have to talk about these

things but I just feel like the response to this photo with all

the inspirational comments, I just don’t think it’s useful

and as a disabled person myself I don’t like being talked

about in that way. I am a person. Yes, I’m disabled but it’s

not the only aspect of my life. And I think that’s what

makes me so uncomfortable about it really, is I feel it is

further segregating the disabled community.

SIMON Would the reaction have been different and more

aggressive say if the child had been someone of colour and

they’d been rejected saying they didn’t specify someone of

colour? Would people be just outraged and say this is out

of order without all the other inspirational bit?

HEATHER Yeah, I think so, and this is where we’ve got a long way to

go haven’t we with disabled people’s rights. We’re getting

there but we’re missing the mark in so many areas, and like

you say with people of colour there would be an outrage

but I don’t think people would bring up the whole

inspiration aspect.

KATE And there’s so many things about disabled kids and

modelling, why do all parents want to get their disabled

kids into modelling?

HEATHER Yeah, I know, I know.

KATE That’s what it feels like, especially because with Down’s

Syndrome they’re always pushing them to get in

catalogues. And it’s great and I want to see them in there,

but they can do other stuff. ((laughs))

SIMON Is there something deeper do you think? Is it they want the

world to appreciate they’re beautiful, not just them as

parents?

HEATHER I don’t even know what it is, I just think it’s like people’s

reaction to it and as I’ve said we do need to do this, we

need to make sure disabled people are represented but

we’re further segregating the disabled community by

reacting in this way.

KATE That’s really interesting that she’s outraged by the outrage.

It’s good, I like that.

SIMON I like it, yeah, yeah.

KATE I think that’s about all we have time for you know, Simon.

SIMON I think it is but it’s great though.

KATE Yeah, really good.

SIMON Thank you, Heather.

HEATHER Thank you.

KATE Thank you, Emma.

EMMA Thanks for having me.

KATE And thank you very much, Laura.

LAURA Thank you.

SIMON That’s it for this month’s talk show, we will be back in

December with a special international edition that we’re

really looking forward to.

KATE Oh, tell me more?

SIMON I can’t say much about it at the moment but it’s looking

really interesting.

KATE Oh, exciting. Well thanks to the production team, Beth

Rose, Emma Tracey and studio manager, Guy Worth. The

producer was Damon Rose. We don’t have a track to play

you out with today.

SIMON Do you want to sing?

KATE I could give you a song right at the end, yeah. I’ll get it

ready.

SIMON Nice.

KATE And while I do so, recommend us to your friends, share us

on Facebook.

SIMON Like us.

KATE Like us, tweet us, rate us on iTunes and other places to get

your podcasts. Review us, tell us how great we are, and

remember the more you rate and review us the more other

people get to find out about the joy that is the Ouch

podcast. And with that we’ll see you in December. Bye.

SIMON Bye.