This is a full transcript of "Be my friend because we're both disabled mums" as first broadcast on 19 October 2018. Presented by Emma Tracey, with guest Kaliya Franklin.
MUSIC - BBC Sounds, music, radio, podcasts.
EMMA - Hello everybody; this is the Ouch podcast and I'm Emma Tracey, back for the very first day after maternity leave.
This is an entirely indulgent podcast because the only things in my head at the moment are babies and children and CBeebies and steamed vegetables and stuff like that, so that's what I'm going to talk about.
And someone that I've been dying to talk to about this for, well really two and a half years since she had her son, is Kaliya Franklin, who you probably know best as someone who was a very, very well-known internet-based disability activist.
"A benefit scrounging scum" I think was what she called herself back then. But we've been sort of tweeting backwards and forwards about having kids as disabled mums and now she's here on the line.
Hi Kaliya, how are you doing?
KALIYA - Hi, Emma. Thanks ever so much for inviting me on.
EMMA - I don't know about you but I've just been dying to have this conversation with you for so long because I think, even though we have quite different impairments, I think you end up having quite a lot in common just because of people's perceptions almost as well and because of just various things that happen over the time of early parenthood I think.
KALIYA - Definitely. I think becoming a parent is a massive change for anyone, but when you also have a disability, I think it's a bit different and some of the challenges you face are different.
And there aren't as many of us around to talk to. I've only ever seen one other disabled parent at a mums and toddlers group and I wanted to run over and say, 'be my friend because we're both disabled mums'.
EMMA - I know.
KALIYA - I thought she might find that too weird.
EMMA - No, I know. And I'm in a great blind mums group called Blind Mums Connect, which I read all the time and I check in with all the time, and then we have like branched off WhatsApp groups for kids of different ages.
And I find that's just invaluable because it's really important to talk to someone who has a clue about the different things that you have to deal with.
I mean, there's lots of similar things, so I like to put my stuff on Facebook. Yesterday I wrote, which is totally and utterly true, that I tipped a packet of Oreos into the baby formula tin because I was so tired that I mistakenly did the wrong tin, even though one's round and one's square.
So, there's plenty we have in common with non-disabled mums but also things that we need to share ourselves.
Will we start back at the beginning and talk about pregnancy first?
Because we massively planned, we absolutely planned this and we probably way over-thought it.
So, I had lots of imaginings about what it would be like as a pregnant blind woman, and it was fine.
I think I thought the worst and it wasn't too bad.
Can you remember back that far? I know we've got different physical impairments that meant that things may have changed for you quite significantly.
KALIYA - Yeah, I found pregnancy really, really challenging.
Some women I think really thrive on being pregnant, and I wasn't one of them. It was physically really, really difficult.
And my mental health was really poor as well because I was so worried about the health of my baby and my health. It was just a very difficult time.
EMMA - What's your disability?
KALIYA - I've got Ehlers-Danlos syndrome which is a connective tissue disorder.
Women with that tend to be quite impacted by pregnancy, and for some that's a really positive change with the hormones, but for me it wasn't terribly positive.
And I was an older first time mum as well, so I think by about week 20 of the pregnancy I had to start injecting anticoagulants every day so I didn't get a clot because I was so immobile.
I certainly found during pregnancy that people just didn't know about the additional disability factors for women.
I was really lucky to have an amazing obstetrician, and I'm so grateful.
But, like all things with disability I found out well after I'd had the baby that there was a specialist disabled midwife who's a disabled mum herself, not that far away, and I think that would have made a massive difference.
But nobody knew in our local hospital, which is the adjoining area, that she existed.
EMMA - Oh what a shame. You said your mental health wasn't that good because of worries; what were your main worries during pregnancy? What was keeping you up at night?
KALIYA - Mostly around how far we'd be able to get before the baby had to be born.
There was a real concern that he would be very premature, so the further we got into pregnancy, the calmer I became in some ways.
Before kind of 24 weeks I was really, really not in a great way. But then after 30 weeks, I was much calmer about the whole thing.
EMMA - And how far did you get?
KALIYAWe made it to 36 weeks, so much further than anyone had expected.
And then it got to the point where I couldn't get to the toilet anymore and I couldn't really breathe and the amniotic fluid was running out, so he had to be born then for his health and my health.
EMMA - I find that birth stories and birth things for people who aren't mums are a bit kind of, they don't want to know about them too much, but was everything pretty straightforward in that area for you as a disabled mum?
KALIYA - Yes and no. I had amazing medical care, and because I had a Caesarean section that wasn't an emergency, actually they're quite calm.
EMMA- I've heard that.
KALIYA - It was more like having an operation than having a birth experience.
But it was fine and nothing went wrong, and I knew my baby was fine when he'd just come out and half the room disappeared because they didn't need the paediatric crash team anymore.
I think that was the moment for me that the fears kind of melted away.
EMMA - Yeah. And had you done an awful lot of planning? I remember when I was pregnant I did heaps and heaps of planning on products, what I was going to get, how I was going to manage everything; getting out and about was my big thing.
Did you do a lot of planning, and if so did that come to fruition or was it all a massive shock when your little boy did arrive?
KALIYA - I think a bit of both probably, like it is for everyone.
I did lots of planning as well around issues like: how would I move him around the house? How would I manage to dress and undress him with weak fingers and poor dexterity? That kind of thing.
When the baby arrives you realise that challenges are maybe not where you thought they were or you find new ones.
So, I wasn't able to breastfeed and initially I found bottle feeding incredibly difficult because of the hand dexterity required to put it all together.
EMMA - Right. So, what did you do?
KALIYA - Well, just persisted because you've got to feed them one way or another, haven't you?
EMMA - Yes. [Laughter]
KALIYA - Eventually I got the hang of it.
EMMA - So, did you find a way of doing it? Did you hold it an unusual way or him an unusual way, the bottle?
KALIYA - I was all right once he was feeding because I used one of those cushions that take the baby's weight for you.
It was actually the dexterity and putting the teat in the bottle and that kind of thing.
So, we ended up using the ready-prepared milk, the one that comes in liquid form, and it costs an absolute fortune but it meant that I could pour a bottle so.
EMMA - Right. But you still had to put the teat in though, no?
KALIYA - Yes. I still struggle with that at times now.
EMMA - So, you talked about dressing and undressing him - I don't want it to seem like a bit of a freak show talking about exactly how people do things when they're disabled - but I'm interested; you said that that was a worry so what did you do and how did you get around it?
KALIYA - Before he was born one of my carers adapted loads of clothes to put Velcro on them instead of poppers to make it easier.
That works in some ways, but it's not always as good for the baby's skin; it can rub so you have to be quite careful.
And then when he was a few weeks old I found that there was a range of babygrows that zipped all the way down instead of poppering all the way up, so he lived in zippered babygrows I think till he was about one.
EMMA - Because actually poppers, nobody likes poppers.
KALIYA - No.
EMMA - Poppers are hard and they take ages.
KALIYA - Yeah.
EMMA - And the bit around the bum is really hard. I get it wrong all the time. And my mum never gets it right. Poppers are tricky for anybody. I think they should all have zips to be honest with you.
KALIYA - Yes. They're more expensive for some reason. I don't know if it's because they're rare or just zips are more expensive than poppers.
EMMA - Maybe the reason why it's mostly poppers is because poppers are more forgiving and babies grow so quickly.
I find with the zip one as soon as it's too small in any way, shape or form the zip just doesn't work as well.
KALIYA - I think I've just been lucky to have quite a slow-growing baby then. [Laughter] We haven't had that problem.
EMMA - So, tell me, the next thing you talked about was getting him around the house, tell me about that?
What do you do, or what did you do - he's two and a half now so he runs I'm imagining - but what did you do to get the new baby around the house?
KALIYA - Initially, my mobility was really poor; I would struggle to get from bed to bathroom.
So, we had something in every room to be able to put him down safely, whether it was a crib or a Moses basket, we had duplicates of everything everywhere.
We'd moved to a bungalow about three weeks before he was born, which is not a great time for any pregnant woman, but it meant that everything was on one level so that made a big difference.
And my partner built this trolley thing. We took apart one of those wheeled trolleys that OTs are so keen on and fitted an old car seat to the top so that it was at the right height to just push him round.
And actually for me with my mobility impairments it was much easier in many ways before he was mobile himself.
EMMA - Right okay. So, he's just not moving, you can push him around the house, you can put him down in a crib or a cot and he's safe.
KALIYA - Yeah.
EMMA - So, what happened when he started to move around, crawl and then walk?
KALIYA - Well, he was quite a late crawler and walker, which again I was really worried about at the time but in retrospect I'm quite thankful for because it gave me more time.
EMMA - Yeah.
KALIYA - So, we did lots of physio together from very early on because he's a bit hypermobile too.
EMMA - That means his joints move much more freely than a regular person's, is that it?
KALIYA - Yeah. And we had to really work at the skills around him being able to sit up and learn to crawl and things like that.
So, we were really lucky, a physio came to the house every few weeks from very early on.
And then he wasn't sort of running walking around until he was about 19 months, so a much bigger gap than some mums because I think some are walking at eight months and that must be quite challenging.
EMMA - Yes, I imagine so. I don't have early walkers. My eight-month old is in a walker now and I find that I have to wear shoes with backs on them or else I get absolutely taken off my feet.
And also you have to remember where stuff is because he can reach things that he couldn't reach before he got around in his walker.
Eight-month-olds on their feet are a law unto themselves because they have absolutely no sense.
KALIYA - No. I feel quite lucky that mine wasn't even sitting on his own properly at that point. [Laughter] He stayed where I put him until quite late on.
EMMA - What were the difficulties when he did start to move?
KALIYA - He was just faster than me. He crawled for quite a long time, and because I wasn't walking well enough I crawled with him.
So, we had quite a few months where we were both crawling really.
EMMA - Are you like me, do you have to get new jeans every couple of weeks? Because I'm on the floor all the time searching for bits of food.
KALIYA - Yeah.
EMMA - And because I can't see them I'm always on my knees basically.
KALIYA - My trousers all have holes too.
EMMA - Yeah, I just buy cheap jeans all the time because I'm always on my knees, always, no matter what, just for anything.
Everything I do with Arlo, my youngest, I do it on the ground, like changing nappies, dressing, all that kind of stuff.
KALIYA - Yes, everything was on the ground, all the toys, all the playing, everything was low down because then you don't have to worry. You're right, they can't fall that far.
EMMA - Well, I do that with the shopping. When my online shop arrives I get them to put it all on the floor because I figure I can't knock stuff off the floor and it works well for me.
So, you see, there you go, there's something we have in common.
KALIYA - Yeah.
EMMA - Are you working at the moment or are you at home?
KALIYA - I went back to work in the summer, so quite recently. It took me quite a long time to get back to work. He was two and a half I think by the time I started back.
EMMA - And tell me about that. Why did you feel the need to go back to work and what was it like to go back to work?
KALIYA - It took me more time in terms of I just wasn't well enough; kind of a year after he was born I was struggling too much.
And I couldn't work enough hours to afford the childcare and rest time to let me look after him.
But I'm quite lucky, I work for a charity called Learning Disability England, and the boss I have now is great; she lets me work entirely flexibly.
And I had previously had a boss like that before going off on maternity leave. And I think that's really hard for managers to do, even when you don't have additional childcare issues in place.
So, when I came back my boss said, 'look, I don't want you ever to feel you have to work at four in the morning, but if that's when you choose to work that's fine'.
I think without that set-up that allows me to do my work around both impairment and childcare it just wouldn't have been possible until he's older.
EMMA - The other thing is do you find being efficient, being disabled I think sometimes gives you an extra skillset around strategies and being efficient and finding ways of doing things, and being disabled and having children, I was able to build on that skillset and use my disability skillset to help me look after my children.
And I think that's come into play again once I've started to come back to work. Would you agree with that?
KALIYA - Definitely. I think all working mothers have to be really organised, but actually if you go into this as a disabled person who's had years of, say, not being able to leave the house without the correct medication or a change of clothes or something, that transition in some ways is easier because you're used to it already.
But I do find it's like trying to keep so many balls up in the air all the time, and if you drop anything for a second it sort of all comes crashing down really.
EMMA - I said to Beth yesterday, I said it's like producing the long podcast every single day because not only am I arranging myself and the children I'm also arranging all the support.
KALIYA - Yes.
EMMA - And that's quite new to me because I didn't need a huge amount of support before I had kids. But arranging everybody to be at the right time.
Even getting here this morning, and actually I should have made this quite quick because I forgot to give the childminder the comforter, the dummy and the muslin that he needs to sleep. But you have to arrange people.
KALIYA - Like you I have two PA/carers that I have to manage, I have the nursery, the kindergarten, the family support, everything to do with running a house and a child, and that's as well as managing your impairment and your employment.
It's quite tough for all mums, and especially working mums.
But when you have an impairment that you have to manage and everything that goes with that as well it's just a layer of challenges that aren't there for parents without a disability.
EMMA - But work is helpful I think too. For me sometimes it's easier to work - and I think all mothers will say this - but in terms of logistically and physically sometimes it's easier to work than to look after the children every day.
Although there are days in the week when I love to be at home looking after the children, but I think if I had to do it every day they wouldn't get out as much as I would like them to and I wouldn't get to do as much as I would like to.
So, I think impairment-wise for me, work is a really positive thing.
KALIYA - You're right, and I think different women want to go back at different times, different ages of the baby.
For me, I would have liked to go back earlier but I just wasn't well enough to go back to work at that point, which meant we had a really, really hard year because it would have been better for me physically if I'd been able to put my little boy in childcare three days a week.
But I just wasn't well enough to be able to earn sufficient money at that point to do it so it's been a bit black.
EMMA - Isn't that ironic?
KALIYA - Yeah.
EMMA - Because it probably slowed down you getting better as well.
KALIYA - Yes.
EMMA - Because you need a lot of rest. I remember some evenings - and again it's not a disability thing per se - but because my ears are always on, I have to be listening to every sound because I can't glance into a room or I can't just take a sneaky peak, I have to ask all the time, 'are you okay? What are you up to? 'blah, blah, blah.
In the evenings I was so tired I was sick, I was actually physically sick because you're just always on to a level, I don't want to sound precious, but to a level that I don't think people can ever understand.
KALIYA - No, I don't think they can.
EMMA - If you want to get in touch with us you can email firstname.lastname@example.org, get us on Twitter and Facebook at @bbcouch, bbc.co.uk/disability.