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"Giving birth is like a quick introduction to disability"

Physically disabled and neurodivergent mums on caring and being cared for.

There's a bit of a parental feel about this week's podcast.

Two mums from Nottingham were categorised in a hospital computer system as having learning disabilities and, they say, received poor treatment as a result.
Claire Whyte and Elizabeth Jones are autistic but their local NHS trust only has the ability to (inappropriately) categorise them as having a learning disability, because there is no neurodivergent box to tick on the system.
They say they were spoken to in simplified language and had decisions about their care made without consulting them. As a result, they felt patronised and left out of their own maternity care. Presenter Emma Tracey speaks to them and we get a response from the NHS and the company, System C, who make the app.

Emma also speaks to Jessica Slice, author of newly published and ironically titled book Unfit Parent: A Disabled Mother Challenges an Inaccessible World. In it she maintains that disabled people are unusually placed to have the skills to be parents. She says her life as someone with POTS and Ehlers-Danlos syndrome, has made her more resilient, patient, tolerant of pain, and thinks disabled people shouldn't be written off as mums and dads ... and a whole lot more.

Presenter: Emma Tracey
Producer: Beth Rose
Sound recording and mix: Dave O'Neill
Editor: Damon Rose

Release date:

Available now

34 minutes

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Transcript


29th April 2025

bbc.co.uk/accessall

Access All 鈥� episode 158

Presented by Emma Tracey



VICTORIA- It鈥檚 been a few months since the photo shoot, how鈥檚 it been for you since?

ELLIOT- I鈥檝e been living in my grey hoodie for most of the time.

VICTORIA- [Laughs]

EMMA- Hello, you two. I鈥檓 sorry to interrupt this very cool fashion moment. The designer and the model are talking to each other. But I do need to let the Access All listeners what鈥檚 going on. I鈥檓 Emma Tracey, this is Access All, and we鈥檝e got Victoria Jenkins, who鈥檚 an award winning adaptive fashion designer who has recently created a range for Primark.聽

VICTORIA- Hello.

EMMA- And we鈥檝e also got Elliot Caswell, who was one of the models.

ELLIOT- Hello.

EMMA- Elliot, what was the fashion shoot like?

ELLIOT- Amazing. It took three days in Manchester and one day in London. They gave me a grey hoodie and a gilet.

EMMA- And what鈥檚 special about them? What鈥檚 adapted?

ELLIOT- They鈥檝e got zips up by your shoulder, so when you go for your injections at the hospital it鈥檚 much easier.聽

EMMA- And it must be strange that your face is all over Primark in the UK and Europe. Have you been round the shops to see yourself?

ELLIOT- I鈥檝e been to a couple of stores in the Midlands.聽

EMMA- And Victoria, you must be very proud as well?

VICTORIA- Yes, very. It鈥檚 all been very surreal but it鈥檚 been wonderful.聽

EMMA- What鈥檚 your favourite?聽

VICTORIA- There鈥檚 a trench coat. Men鈥檚 cargo trousers are my favourite, I actually have a pair myself.

EMMA- Why are they your favourite?聽

VICTORIA- I think because they鈥檝e got a lot going on and they鈥檙e quite unisex, and they鈥檙e just kind of a bit on-trend with this 鈥�90s revival that鈥檚 going on at the moment. So, they鈥檝e got zip openings in the side as well as at the front. They鈥檝e got zip openings in the leg so if you鈥檝e got a prosthetic you can put the trousers on and then attach your leg. And there are buttonhole openings in the pocket so that tubes can be fed through.聽

EMMA- I mean, us disabled people do love our pockets. Tell me, how is the line going?聽

VICTORIA- I know that the Primark team are very happy and the sales are higher than I think they were expecting or hoping for, which is very good to hear. So, we co-designed, and what we did was we worked with bestsellers and then I sort of helped them understand how to adapt them.聽

EMMA- Oh, that鈥檚 sensible.聽

VICTORIA- It also meant that we could go a lot faster, because if you think the previous year in January they had four adaptive lingerie pieces, and they鈥檝e gone from four lingerie pieces to 49 clothes.

EMMA- Wow.

VICTORIA- So, I think that鈥檚 [laughs] a big jump forward. And I am working on a September runway show which I鈥檓 pretty sure, if Elliot鈥檚 up for it, I鈥檇 love to have him in it.聽

ELLIOT- I鈥檝e very excited.

EMMA- Thank you to Elliot and Victoria, and on with the fashion show!

MUSIC Theme music.

EMMA- Hello, I鈥檓 Emma Tracey and this is Access All, the weekly disability and mental health podcast from 91福利社 News. Now, we will be reading some of your messages later on in the show, but for now keep them coming in all the usual ways.聽 You can email accessall@bbc.co.uk. Or you can send me a WhatsApp message; put the word Access at the beginning of it and send it to 0330 123 9480. You can also subscribe to us, if you haven鈥檛 already done so, on 91福利社 Sounds.聽

Now, there is a bit of a parental feel about this week鈥檚 podcast because in a bit I鈥檓 going to be talking to disabled journalist, Jessica Slice, about her book with the provocative title Unfit Parent. Jessica has two children, and she needs to stay horizontal most of the time, so she does most of her parenting from bed. And she spoke to a group of disabled and non-disabled mums about the first few weeks of motherhood. We will find out what they said in a bit. But first, two mums have told Access All that their experiences of NHS maternity care were not up to scratch because they are autistic. Claire Whyte and Lizi Jones who run the organisation Autistic Nottingham, say an app used widely by the NHS to give parents access to聽 maternity info, called Badger Notes, classed them as having a learning disability instead of being neurodivergent and that聽 they received inappropriate care as a result. Both women are on the line with me to talk about this, hi ladies.

Lizi- Hello.

CLAIRE- Hey, how鈥檚 it going?聽

EMMA- Very well thank you. Just so that we鈥檙e really clear: being neurodivergent means that your brain is wired slightly differently, and if you鈥檝e got a learning disability you might struggle to understand complicated information. Sometimes people can have both, but not everybody does. Claire, you鈥檝e got a nine month old baby, how鈥檚 that going?聽

CLAIRE- [Laughs] chaos.聽

EMMA- Oh my goodness, nine months is an interesting age.

CLAIRE- Yes, and they eat everything that they get their hands on, including the cat.

EMMA- [Laughs] So, this app, Badger Notes, how was that used in your maternity care?

CLAIRE- Well, we know it was originally set up, I was told, that you used to have a physical paper booklet, and now they鈥檝e changed to an app for accessibility, to make it easier and it would make everything so much more streamlined and easier for everyone to deal with. But it just caused more complications.聽

EMMA- NHS England said that it鈥檚 an app which the trusts can opt in and out of, so not every trust uses it. Claire, what reasonable adjustments did you need?

CLAIRE- I needed a lot of clear communication, but I also needed people not to do things over telephone. My auditory processing can be a bit off at times, so having things written down or speaking to people face-to-face with a secondary person to help me communicate was generally the base level of what I needed. The home birth team of midwives were fantastic and they just seemed to kind of go, 鈥極kay, what do you need? What can we do for you?鈥� and they tried their level best. I had some staff at the hospital treat me like I was very disabled and start using very simplified language and things that weren鈥檛 necessary. I had some consultants suggesting that maybe I lacked capacity to have a baby. It was very varied depending on who you spoke to on what day.

EMMA- And how much do you believe that鈥檚 down to the Badger Notes app and you being classed as having a learning disability instead of being neurodivergent?

CLAIRE- I think quite a lot of that, because when you see the word learning disability, like my uncle had Down鈥檚 Syndrome for example, you see that and you expect someone that would need a lot of extra support, they need things put in a very simplified way. But as someone who is autistic without intellectual disability, I have a reasonable IQ, I have higher level education, I didn鈥檛 need that putting in that way. And I felt a lot of information wasn鈥檛 being given to me because they thought I didn鈥檛 have capacity to cope with it. Whereas being autistic I prefer to have all the information upfront so I can make that informed choice, and I felt like that was taken away from me.聽

EMMA- Give me some examples?

CLAIRE- My son, about three weeks before he was born, he just stopped growing. Also he was born at 5lbs 4oz so he was on the smaller side.

EMMA- Wow, that鈥檚 really small.

CLAIRE- And I just kept being told, 鈥榃e have to do this, we鈥檝e booked your induction鈥�. And I鈥檇 be like, 鈥榃hy? I didn鈥檛 consent to that. Where鈥檚 the discussion?鈥� and it was a constant, 鈥楾his is in your best interest鈥� and no one wanted to sit down and go, here鈥檚 the information. It was only after, being a CEO I鈥檓 used to saying no, we鈥檙e going to discuss this, we鈥檙e going to do things, and pushing things that we got somewhere to have a discussion. And it was all, again, just done because they thought it was best. It just seemed like they just decided to class me as not having capacity without actually doing any assessment of my capacity.

EMMA- Right. What impact did all of this have on you during your pregnancy?

CLAIRE- I lost a lot of trust in how the hospital was treating me. So, when consultants were saying, we have to do this, we have to do that, I was starting to think, I don鈥檛 trust you, I don鈥檛 believe you.聽

EMMA- And did you advocate for yourself? Did you speak up for yourself and say, I鈥檓 autistic, I don鈥檛 happen to have a learning disability, this tick box needs to be changed?聽

CLAIRE- Constantly. I was told that it was correct, that they had no other way of classifying me.聽

EMMA- Lizi, you鈥檙e expecting your second child.

Lizi- Yes.

EMMA- And you鈥檙e a neurodivergent as well. What reasonable adjustments did you need and do you need at the moment?聽

Lizi- Most of my needs are more sensory, and a lot of it will be to do with not necessarily understanding information but processing it. I need to be face-to-face.

EMMA- How did you realise that you were also classed as having a learning disability in this Badger Notes app?

Lizi- Well, my previous son was born under the same hospital on the paper documents, and when I had him my care was excellent. I had a hospital passport pinned to the front with all my needs in it, and they were brilliant, they were absolutely brilliant with me. This time round I get introduced to Badger Notes and the midwife goes through them with me, she was quite shocked when she discovered that for autism she had to tick it under the category of learning disability.聽

EMMA- Okay. And what did that mean for your care then?聽

Lizi- There was a minor complication with my placenta; nobody used the big words with me, so they didn鈥檛 actually tell me what it was. Luckily they gave me a printout to take somewhere and I read my own notes and did my own googling, because nobody communicated it with me.聽

EMMA- Oh gosh, we鈥檙e always told not to google, aren鈥檛 we?

Lizi- Yeah. They didn鈥檛 really give me a lot of other choice.聽

EMMA- And you had no passport this time. Was there not an electronic passport that you could bring around with your likes and dislikes and all your adjustments etc?

Lizi- There鈥檚 a box to tick that says, do you have a hospital passport, in Badger Notes, but nowhere to upload it. So, it鈥檚 ticked but nobody ever sees it.

EMMA- So, what do you think could have been done better in your cases?

Lizi- I think it鈥檚 the categorisation of things. For some reason as well it keeps putting me down as a smoker and I haven鈥檛 smoked since 2016, but [laughs].

EMMA- Some people listening might be saying to themselves these two are really strong, capable, confident women, how are they having any difficulty at all with this.聽

CLAIRE- If we鈥檙e having this problem in our positions in senior management what is happening to the women that don鈥檛 have that kind of strong, confident way of putting themselves forward or don鈥檛 have any extra support?聽

Lizi- It鈥檚 just changed everything about how I鈥檓 dealt with. It makes you wonder why you even disclose it to put in the notes in the first place if you鈥檙e wanting it disclosed to have your needs met and it results in you not having you鈥檙e not having your needs met. It鈥檚 a paradox.

EMMA- And what responses do you get from the teams when you bring up the fact that it鈥檚 a wrong classification, when you say I don鈥檛 happen to have a learning disability, I鈥檓 actually neurodivergent?

Lizi- They can鈥檛 change it.

CLAIRE- Yeah.

EMMA- What impact did all of this have on your maternity care, do you think?聽

CLAIRE- The home birth team were fantastic. But if the hospital team had been more supportive and had been acting in more of an inclusive and understanding way I would have had a more strong relationship with them and been more trusting, and we probably could have got something else arranged that would have been suitable. Because my home birth discussion was around my sensory needs being in a hospital, and I didn鈥檛 trust them to meet those needs. I don鈥檛 know what Lizi will say about her current pregnancy.聽

EMMA- Yeah, you鈥檙e not finished yet.聽

Lizi- No, I鈥檓 not done yet. I feel like every appointment I鈥檓 going in prepared for battle. I almost come in using the big words straightaway before they start so that they can see that whatever they鈥檝e read isn鈥檛 true before I even get in there.聽

EMMA- And do you think it鈥檚 having any effect on your pregnancy?

Lizi- It does mean that I am less likely to report issues to them.

EMMA- Why?

Lizi- Part of me is worried that they would, like if I said that I felt a little low in my mental health I鈥檇 be concerned that they would probably go down the social services route. Because the follow on box from that learning disability thing does actually ask if you have social services input. I don鈥檛 think I鈥檇 necessarily want to raise with them if I did need the help.聽

EMMA- Well we got in contact with Sherwood Forest NHS Foundation Trust who provided Claire and Lizi鈥檚 maternity care and who use Badger Notes with all of their maternity patients, and they told us:

NHS REP- We are sorry to hear of Elizabeth and Claire鈥檚 experiences, and we will contact them to fully understand their concerns, and do all we can to address them. We offer colleagues regular refresher training to ensure effective use of electronic systems, including BadgerNet. We鈥檙e also keen to make sure that neurodivergence doesn鈥檛 act as a barrier for anyone accessing our services, and improving knowledge so that our teams better understand neurodiversity and what they can do to support all our patients giving birth.聽

EMMA- We also spoke to Nick Wilson who鈥檚 the CEO of System C who created and maintain the app, and he said:

NICK- One of the ways parents to be can use the Badger Notes app is to provide information, including some details of their medical history. This information is pulled in to BadgerNet to be reviewed before and during the meeting with the midwife before any clinical decisions regarding onward medical or social care are made. The information provided regarding neurodiversity does not automatically trigger any referrals, workflows, pathways or appointments. These are only ever done as a result of a clinical decision. Badger Notes is used by hundreds of thousands of expectant parents every year. We鈥檙e always looking to make the app better for everyone, especially those with specialised or additional needs. That鈥檚 why System C will review how we categorise neurodiversity in the app, following international standards as a benchmark.聽


EMMA- So, as a result of us getting in touch with them about Claire and Lizi鈥檚 story, they are looking at how neurodivergence is categorised on the Badger Notes app, or Badger Net as they sometimes refer to it as. I reckon that鈥檚 a positive outcome. Well, ladies best of luck with your little ones. I鈥檇 love you to keep in touch, let me know the outcome of all of this. And thank you so much for getting in touch with us with this story. Many problems do arise when disabled people are lumped together or classified wrongly, so if this story has resonated with you please get in touch and tell us your experiences, or tell us about another story that you think we should be looking into. You can email accessall@bbc.co.uk, or you can send a message to 0330 123 9480. Lizi and Claire, thank you so much.

CLAIRE- Thank you.

Lizi- Thank you.

MUSIC-

EMMA- You have been sending in your messages so let鈥檚 read some of them. A few weeks ago I spoke to blind influencer, Lucy Edwards, who鈥檚 currently losing weight so that she can qualify for a special type of IVF where the embryo implanted won鈥檛 include the gene that causes the condition which meant that Lucy lost her sight and that she鈥檚 more susceptible to miscarriage and other complications as well. There鈥檚 so much more to the story, and I would love you to go back and listen to the whole conversation. But we did get some really, really interesting emails about it. Listener Janice is delighted for Lucy because her daughter is registered blind and she was refused IVF over a decade ago for that reason. I do know quite a few blind ladies now who have had IVF, so hopefully things have changed in that regard. Also Linda got in touch and she said that her daughter can鈥檛 conceive because of treatment she had for leukaemia as a teenager, and she鈥檚 been refused IVF with her partner because he has a child from a previous relationship. So, really, really interesting takes on the IVF journey there. I think Lucy has definitely hit a nerve.

Regular listener, David Apps, got in touch about another bit of the conversation which was on batch cooking, and Lucy has found a wee hack for figuring out what her freezer meals are using magnets and reusable labels. You鈥檒l have to find out exactly what that is by listening to the episode. But David had a good point, he said he would love to hear more disabled people talking about ways that they manage common tasks in their lives. So, if you have found something that makes your life easier and you think other people should know about why not send me a WhatsApp message on 0330 123 9480?

You鈥檝e also been getting in touch with us on the socials, on Instagram and X, we鈥檙e on @91福利社AccessAll. And people have been pulling us up because me and Lucy made a sweeping assumption that blind people smell everything, including our food, so that we can identify it. And MJ got in touch to say that they are blind and they were born without a sense of smell, so they鈥檝e never smelled anything in their lives. Really interesting to be blind and not have a sense of smell. It鈥檚 something I kind of want to hear more about actually MJ, if you want to get in touch.聽

You have of course been getting in touch with us about the government鈥檚 planned changes to disability benefits, and we鈥檝e been reading every single one of your messages. We will come back to some of those when we return to this topic very, very soon. Thank you so much for getting in touch. Keep your messages coming.聽

MUSIC-

EMMA- Jessica Slice is the author of Unfit Parent, a disabled mother challenging an inaccessible world. The book delves very personally into her journey to motherhood and society鈥檚 views of disabled people. Jessica is the mum of two children who both came along after she was diagnosed with POTS, a heart related difficulty which means she has to lie down a lot of the time, and EDS, Ehlers-Danlos Syndrome, which affects connective tissue. Jessica is here with me now for a chat about it all. Hi Jessica.

JESSICA- Hi Emma, thanks so much for having me.

EMMA- Oh, thank you for being here. How are you doing today?

JESSICA- I鈥檓 doing well. It鈥檚 a different time here so I just got the kids off for the day. I just finished the morning chaos.聽

EMMA- Oh gosh, it鈥檚 still a hard job even years and years into parenting, I find getting them out in the morning the trickiest thing. And they鈥檙e boys so they just dive around really causing chaos and being wonderful, you know.聽

JESSICA- [Laughs]

EMMA- I love speaking to other disabled parents, and I particularly love getting a bit of advice from them [laughter]. And actually, as we鈥檙e talking about getting out the door, I just wondered have you got any strategies for me on how to guide and encourage them to do all the things they need to do, like get dressed, brush teeth, without running around and trying not to shout?聽

JESSICA- [Laughs] I have nothing about trying not to shout. I mean, my priority is just having it done. My only advice is to set the bar lower; that鈥檚 sort of what I try to do [laughter] as much as possible with my parenting is think, like, is this a real standard or is it something that鈥檚 been imposed on me and can I ignore it. And so there is a child who will not be named who had some brief underwear refusal this morning, and that I decided was a standard we were going to stick to is that we wear underwear. But then there are other things and I鈥檓 like, okay we can give up on that.

EMMA- It was only because you do have to spend a lot of your time lying down, and from your book I read that you do a lot of your parenting from bed or at least from a horizontal position. I鈥檓 running around in their face all the time going, right next job, next thing. How do you do it?

JESSICA- So, I needed to do hair this morning which takes a bit of time. My eldest has curly hair and she didn鈥檛 want to, so my compromise was that I would tell her a very scary story while I do it. So, I guess I do a lot of bribing with very child specific rewards on the other end.聽

EMMA- I love it. You see, I鈥檝e learnt something already and I haven鈥檛 even started the proper questions yet.聽

JESSICA- [Laughs]

EMMA- After you got your diagnosis and you knew what was making you sick and why you became a wheelchair user etc, you knew you couldn鈥檛 carry a baba, so you went and adopted a child. Is it giving too much away to say you had your second child through a surrogate?聽

JESSICA- No, not at all. Yes, our first was through the foster system and then the second someone very close to us was a surrogate for us.聽

EMMA- Silly question, you can ask me the same one if you want, but why did you want to become a parent? You knew you couldn鈥檛 carry a child, you weren鈥檛 feeling very well for a long time; why did you want to become a parent?

JESSICA- You know, I didn鈥檛 really ever make a decision to become a parent. I think one of my best and worst qualities is that I鈥檓 morally rigid, and we had a two-bedroomed house in California where it鈥檚 very expensive to live, and having a second bedroom felt like such a luxury that I became absolutely convinced that it was a moral imperative that we allow children who needed a place to stay to live in our second bedroom.聽

EMMA- Wow.聽

JESSICA- [Laughs] we鈥檇 only been dating eight months and I convinced my then boyfriend to take foster parenting classes with me. And we didn鈥檛 intend to adopt, we didn鈥檛 get an adoption licence; we just wanted to foster and we wanted to open our second bedroom to older kids. We met with a 16 year old refugee from Eritrea who ended up being placed elsewhere. But that was sort of our way of thinking about it was if we had the space and the emotional capacity then we should allow kids to stay here. And then our second child that came to stay with us was a newborn, which we did not expect at all. And it was supposed to be for a few weeks, and she is now my eight year old kid who just went off to school for the day.聽

EMMA- Wow. What was it like going into the fostering thing as a disabled person? You always feel like society and social services and everything are kind of looking for what they would consider perfection.聽

JESSICA- You know, it was hard. The classes we had to take to be foster parents were not remotely accessible, and I didn鈥檛 have a good wheelchair at the time. And I have trouble with thermoregulation and the room was very warm. So, I actually had to quit after the first six-hour class. And at one point someone said to me, 鈥榃ell, if you can鈥檛 sit upright in this warm room how are you going to be a parent?鈥� and I thought, well I don鈥檛 know that the Venn diagram of capable parents and sitting upright in a warm room is like a circle, I don鈥檛 think you have to do both of those things. And then also to get a licence I had to have a doctor sign off and say I was healthy enough to be a parent, and that was an extremely anxiety inducing part of the process because my doctor knew all of my health complications, he had been around for the hardest moments. The spoiler is he did sign off, in fact he said a child would be lucky to have us. But I procrastinated the conversation with my doctor for months because I dreaded that he would tell me no.聽

EMMA- And you just couldn鈥檛 bear to hear that. Let鈥檚 go back to the parenting because it鈥檚 my favourite subject anyway. At the heart of it all really I think is that you鈥檙e saying that disabled parents mustn鈥檛 be written off, and that actually there鈥檚 lots of things that we are more resilient. Do you think that鈥檚 what the book鈥檚 about really?聽

JESSICA- Yeah. I think that disabled parenting actually offers an offering up to all parents as a kind of exit ramp away from individualistic and perfectionistic and this kind of intensive parenting that people are trapped in. I鈥檇 love to hear what you think, but I think the skills that we develop as disabled people have so much use when it comes to parenting. It鈥檚 like we鈥檝e been training for flexibility and problem solving and patience and getting rid of the myth that if you need people to take care of you then you鈥檙e not able to be a care giver. I think that鈥檚 such a myth, and I think every care giver needs help, and disabled people offer an example of how all parents should be more interdependent and more reliant on other people.聽

EMMA- It takes a village and all that.聽

JESSICA- It does.

EMMA- I mean, one of the scariest things for me when I first became a parent was going out with the kids and how I would be perceived. What was that like for you?聽

JESSICA- You know, I鈥檝e had more awkward interactions out on my own than with the kids. Oh, actually I just thought of something. I was at an airport with my baby on my lap years ago, and the airport told me I wasn鈥檛 allowed to have the baby on my lap in the airport.聽

EMMA- Oh. Why? Why did they say that?聽

JESSICA- They said it wasn鈥檛 safe, which is just absurd. It鈥檚 how I carry my kids [laughs]. Where was I going to put the baby? And so then my husband had to carry the baby, but then he couldn鈥檛 carry the suitcases because he had the baby, but I can鈥檛 carry the suitcases. So, then I had to kick the suitcases in front of my wheelchair, which is absolutely unwieldy. I was just kind of slowly making my way with my suitcases flying all over the place in front of my chair.聽

EMMA- Would they not give me airport assistance or anything like that?

JESSICA- They pushed my chair. The airport person pushed me, and then I kicked the suitcases [laughter].聽

EMMA- That鈥檚 really unbelievable. I got airport assistance really recently because my husband had to watch the two fully sighted children, he鈥檚 visually impaired, while I got through the airport with the stuff, and that was the only way we could do it. I never actually had to kick any suitcases though [laughter]. But for your book you spoke to disabled and non-disabled parents and a group of each from all different backgrounds and stuff. What were the biggest themes that came out? What surprised you maybe, the difference between the disabled and the non-disabled parents?聽

JESSICA- So, the hardest thing when I talk to disabled people was almost always their experience in public. There鈥檚 this professor in Florida, Dr Aaron who I spoke to a few times, and she鈥檚 had people scream at her as she rides down the street with her son on her wheelchair with her, and say, 鈥楾hat鈥檚 not safe!鈥� She鈥檚 caught people on the neighbourhood listener group talking about her, 鈥榃e should do something about that poor mother鈥�. And of course when she replied and said, 鈥極h hi, I actually would love some money to get an accessible van鈥� no one replied.聽

EMMA- Oh okay. It鈥檚 a lot about health and safety, isn鈥檛 it, a lot of the time. That鈥檚 what鈥檚 coming up here. So, there was a lot around birth and the first weeks as well, wasn鈥檛 there?聽

JESSICA- Exactly. But then the thing that was so interesting was that when I interviewed both of those groups about their first week of parenting non-disabled parents in every case described it as one of the most harrowing weeks of their life, extremely exhausting, it made them worry that things would never get better again. They kept saying oh, that was so hard, that was so hard. And when I talked to the disabled group they all said, oh it was fine. And I would ask the disabled people their stories and they would say, I had these complications, I kept having to go back to the hospital, I was in extreme pain. These weren鈥檛 easy stories, but for some reason the disabled people seemed to be able to ride those extreme waves. And I thought about this a lot, and I really think part of it is this giving birth is this kind of quick introduction to disability, that you鈥檙e suddenly in a much more fragile body, a much more needy body, like what we were talking about, you have to ask for help. And if you鈥檙e not disabled you鈥檙e not familiar with the feeling of disability, and it can be so scary because our society teaches us that being disabled is the worst case scenario. But if you鈥檙e already disabled it鈥檚 nothing new, you鈥檝e been practising at being in a fragile body, you鈥檝e been practising not being predictable. And even though society has told you to be afraid of being disabled you鈥檝e sort of reckoned with that already.聽

But I would love to hear, how did that jump out to you? Was that your experience? Are you comfortable sharing?聽

EMMA- I鈥檓 very comfortable sharing. I think that I found the first weeks very difficult [laughter], and I think I found that the baby stage in general was good because I always had the baby on me. I happened to breastfeed my baby and it was something that only I could do, and it was the only thing that I felt at the time that only I could do for my babies. Everything else someone else could sort of take over or do for me or help me with or whatever, but that was the one thing that I felt I could do myself. Obviously not everyone can do, and that I felt really helped me to feel that I was doing something specific for my kid. And that鈥檚 why I love the stories of all the things that you do with your daughter and now your other child in bed, and all of that long, long connected time, saying that was such a gift to them.聽

JESSICA- So, I hope to one day have an accessible house where I could use my power wheelchair all around my house, in which case I would be much more mobile. But as it is I spend most of my time in bed, which is where I can be comfortable and not get as dizzy. So, almost all of my parenting happens in bed. I have a microwave and fridge nearby, I have baby food right here, I have kid food, I have my kids鈥� toys, I have their hair products, I have a stack of kids鈥� books, I have diapers and wipes; all of my supplies are right here and this is where it happens. I mean, this interview is happening in bed too. And I鈥檓 trying to normalise that doing things from bed, trying to normalise for myself too, that doing things from bed isn鈥檛 shameful or something to be embarrassed of. There is nothing inherently less professional about sitting on an adjustable mattress if that is what is needed for your body. This conversation can be just as fruitful in this position; it鈥檚 probably more so because I鈥檓 not slowly passing out [laughter]. And time with my kids can be just as good. It鈥檚 not some halfway version of parenting. I mean, so much happens here. Yes, we watch TV here. It is kind of the party room in the house; it鈥檚 where the family is most of the time when I鈥檓 not working.聽

EMMA- Do you ever feel left out when your husband and your children are in the other parts of the house?聽

JESSICA- I really, really do. It鈥檚 my dream to have a house that I can access more thoroughly. I鈥檝e actually never seen our washer and dryer in this house, which I mean I guess sounds like a privilege.聽

EMMA- Oh, you lucky, lucky thing.聽

JESSICA- I know [laughter].聽

EMMA- That was Jessica Slice on the line from Toronto talking to me about disability and motherhood, and her book, Unfit Parent. Now, that is it for this episode. Next week you will hear something that I made for the 91福利社 World Service, which has Stevie Wonder in a cameo role. And guess what? He told me I was lovely. I hope you enjoy it. Catch you next time. Bye.聽

[Trailer for The Today podcast]

AMOL- Hello, it鈥檚 Amol Rajan here.聽

NICK- And it鈥檚 Nick Robinson, and we want to tell you about The Today podcast from 91福利社 Radio 4. Yes, this is where we go deeper into the sort of journalism that you hear on Today, exploring one big story with more space for insight and context.聽

AMOL- We hear from a key voice each week, a leader in their field, be they a spy chief, a historian, a judge, a politician, all with something unique to say. And we make sure they鈥檝e got the time and space to say it.聽

FEMALE- The WhatsApps show the character of the men who were running our country at that point.聽

MALE- The United States and its allies will then be confronting a kind of axis, call it the axis of ill will.聽

AMOL- And from surprising voices with something important to say:聽

FEMALE- If the next scan says nothing鈥檚 working I might buzz off to Zurich.聽

NICK- We give you our take as well and lift the lid just a little bit on how The Today programme actually works.聽

AMOL- That is The Today podcast. Listen now on 91福利社 Sounds, and subscribe.聽

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