Real Productive Justice Conference Pregnancy and Childbirth

where our next panel is on pregnancy and childbirth something that's been quite topical of late particularly given some of the work that's been done globally but also the Joe Duffy show for some reason is is now one of the reasons that we can talk about pregnancy and childbirth obviously a lot of this work has actually been going on for years and we've got three people with us who've been talking about this for a lot longer than that so we have a researcher who's who at Queen Mary in London and as a senior medical law lecture we've Sinead Redmond who's a childbirth rights activists and reproductive rights activist and the its kind of support like kind of general those at all and we have Sara Fitzgerald who is a writer and I am I board member and disabled disability rights activist and a – Alison who is 7 I so with no further ado I'm gonna we're just gonna get kicked off here [Applause] I'm sorry that was absolutely incredible and I think really kind of hit home the extent of the the social barriers that are being faced in terms of the medical profession and the biases that that can be seen seen there and also that the PP impact that that has next up we have Sinead Redmond who is going to be talking from her perspective is rights activists thanks Maria and I recognize an awful lot of the faces in this room as a result of my work in the repeal campaign of the movement towards our bodily autonomy in this island over the last seven years or so and but it's also been about a year as a result since I did any talking in front of people so the other day to practice forgive me and as I mentioned and I was involved in the repeal campaign over the last seven years and my focus was really around continued pregnancy and birth for a lot of us I have two daughters of my own I had previously had an abortion but that wasn't what pushed me to become involved in an abortion I actually it was when I was six months pregnant on my first soldier who is now she's my six I haven't slept in about seven years the vehicles and and the anti-choice rebuild like billboard campaign and abortion tears her life apart there's always a better option that was launched through that my own experiences of denial of oddly autonomy in pregnancy and birth and my resultant although it's I suppose is difficult to kind of pick ice where you're impaired mental health risk begins I very much tells us mine was as a result of my anxiety throughout pregnancy and then subsequently your having experienced birth trauma and then after those years and years of sleep decorations definitely did not help and but I suppose I'd like to I'd like to highlight as well that when I'm talking and much of my work has been around my activism work has been around supporting women and trans people in parents in birth to experience fragile mental health and that can often be as I said as a result of pregnancy and birth so I'm not only in not only in the area of mental health but also in the area of physical health and physical disability sometimes our experience of pregnancy and birth can be what leads us to experience life as a person with disabilities where is that something not something that would have happened or how we would have experienced life before that was certainly my experience and I know that in hindsight er can maybe be difficult to unpick and where I began to you and like you can see patent 40 really maybe looking back but when you are carrying so intensely for someone else for a newborn and for a talking six year old I don't know when it stops I'll report back and you lose the ability to prop yourself up in the way that you had before and pretty as well when you have experienced and denial of bodily autonomy trauma and maternity services and the supports that you have around yourself you move over it's caring for your child and so you become unstable and rocky as a result and as Sarah has mentioned the access to support in your journey in your own journey and in parenting and birth are not consistent are not necessarily accessible for all women and trans people who are who are parenting who are experiencing pregnancy and birth and something that I particularly seen um is that women with pre-existing disabilities and medical conditions have extreme difficulty in having any kind of consistent approach around their pregnancy care and their birth care in entering their interactions with their existing medical team and I actually think there's a particular culture in maternity care of disregarding the patients in front of you the person in front of you but I don't think this with the same consistency across all their care of speciality particularly in Ireland I know a lot of us work towards the removal of the Eighth Amendment and I think that in some people and there was perception that the Eighth Amendment was the cause of our denial of bodily autonomy there are M of the misogyny within that maternity care I think it was a symptom I think it was the expression and the real legal expression of how women were and in some cases still are viewed within the medical medical material model and something that we also come across a lot is women who want to have access to a certain model of care and sorry I'm saying we I really mean I am like the other activists that I've worked alongside in my kind of journey lots of humor and room and is women who want to have access to a particular model of care which is the which is the maternity model of hair where birthless Teresa pregnancy and birth of cheese is really a normal part of life not necessarily a medical emergency and for women who have additional needs and women trans people who have additional needs disabilities maybe and that becomes more and more difficult to access and and for a lot of people it's not because they necessarily don't want contact with doctors during their pregnancy or birth it's because they want to be assured that they won't experience what are necessary interventions or necessary medicalization and what they perceive as a renewal of their own voice and their own experience from the centering of their care often what we would have heard from from doctors is the idea that they have two patients in the entire journey of pregnancy and birth and I would argue that while of course there is the case of two ahead to em concerns there you have one patients and it is my job to care for a person lion carrying it's my job to make decisions on their behalf I want to hear what's going on with them boss I don't want you to think that you are the person caring for them I want the information and I want to then make my decisions accordingly need not how about taking it to my hand and in my second pregnancy which was actually on paper looks far more worrying than my first pregnancy because I had pulmonary embolisms in the 13th week apparently so plus in hindsight was a near-death experience and I actually felt far more empowered in my pregnancy despite the fact that it was much more difficult in many ways so I was already experiencing and mental frailty I suppose and and a lack of ability to connect with supports and they kind of realistic and consistent way in last which is something that we see kind of consistently through I thought I'd experienced and physical debility from my firm from my first pregnancy kind of carrying on which was resolved after again finding private care which is not something that you should need to buy your wages but nonetheless is reality for much many many women and many women I know there's during and after pregnancy and again comes back to what I mentioned earlier which is how the experience of pregnancy and birth can lead you to experiencing life as a person with the disability when that wasn't your experience before and yeah but my second pregnancy and birth as I said even though to someone assassin both of my experiences on paper it looks as though it was a lot more traumatic and a lot more difficult was for me much much better as an experience so I suppose what I want to highlight is us I think a lot of people Assassin from the aid so I think you had this medical experience you had this potentially dangerous it's dangerous occurrence and you had a more medicalized experience or a birth that you know you thought you didn't want and but it's about how you are communicated with it's opposed how you are put at the center of your decision-making and of course for people who live life with disabilities that's it that's the case all the way through om your your intersection with the station you're in your interactions with healthcare and but as I say I feel that's intense advice in the maternity services where it there is and always has been in the medical model of a tradition of removing the voice of the person who's at the center of being cared for because there's an assumption but it's always an emergency or that the person providing the care always knows best now I want to highlight that the working conditions in parody services in Ireland and therefore the conditions that we're being cared for are absolutely horrific and are only getting worse and and I haven't had concerns Randolph because I think there's a lot of you know well no we creates a huge amount of burning in the aftermath of the referendum I know I was only starting to come back to myself a couple of months ago and I certainly wouldn't be able to travel to go away from home and open til very very recently and what I think things are getting rapidly works within the maternity services in terms of staffing in terms of facilities in terms of funding facility and I have grave grave concerns around how long before it collapses in parts or even completely and and because women and people with disabilities are at the most most vulnerable I think within the system I worry about the potential outcomes for Olson Freud and was in there and so that wasn't very helpful but I'm not I'm I'm feeling mostly concerned and the maternity services at this point on for where we are going I don't think repeal is the panacea for the maternity services I think a lot of people thought it would be I never thought it was going to be on I feel like we need to build for more of a push towards not accepting maternity services maternity care provision on our health care needs within lost forever being at the bottom of the barrel hello everyone to top acts to follow there and so fascinating to hear about the experience like and I guess that one you know at different levels one of the things I wanted to focus on I'm trying to think about is just how we can use you know the expertise from experience how we can translate that into legal consciousness and make hold lower countable stuff so that's one of the things I'm trying to think about and with you all today but so basically what I'm trying to what my brief is just to speak briefly about rights in pregnancy and childbirth then for adults with disabilities and and so following on from what's been said because you know so much about law is everyday life right our experience of law at the interface in medical services and it's not just if I was in the courts or in the legislature obviously right and so trying to think then about how we use both the potential and the limits of formal legal rights to address you know some of the gaps in our protections in everyday life around childbirth and around pregnancy options so that's how I'm thinking about rights then and that way how to hold them to account and use them I suppose in order to try and address the gaps in our human rights in practice as well as on the books and so when thinking about that then basically I just want to kind of focus I suppose on how then we can bring the the consciousness of rights and the experience and expertise around childbirth and around pregnancy that we've heard about how we can bring that to the legal protections as they sit at the moment in the context of pregnancy and childbirth in Ireland and so as everybody knows you know there's a there's a long legacy of not respecting women in pregnancy at the moment of junaid said and and so that's the context in which we're working but at the same time we do have you know we do have a right to refuse treatment as part of as part of the doctrine of consent and that has been formally recognized as well remember in HSC against B so in that case in 516 which concerns an effort by the HSE to perform a c-section on a woman the pregnant woman as she was in labor and you know that is a good result in a sense right and so that's important to that decision and in that context that they decided even though the Eighth Amendment was present you know even though they assessed the rights like the unborn they decided that it was a step too far basically to compel a woman to undergo a c-section even though she had a history of having had three c-sections and the concern was that she would have uterine rupture right there was a significant risk to her health in her life if she went ahead with a c-section in those circumstances so it's pretty all the medical evidence right and again this is about over medicalization and challenging – but a lot of the medical evidence was given was that it was a significant risk okay so even though they kind of guesstimated the risk as a one-in-ten risk of uterine rupture and even though you know that could have very significant consequences for her now obviously that's not the only thing that counts right we all know that she should be able to take on board that risk if that's something she chose but the court actually supported her in that even though we were in the shadow of the Eighth Amendment at that point so that's something for us to hold on to right that right to refuse treatment as as protected in that case and now there's obviously though the limitation of that is the uneven protection of that right to refuse treatment in the context of pregnancy in the sense that it's dependent on capacity rights that her capacity was challenged by the HSC in that case her capacity to make decisions and again for our purposes two of the interesting things then and thinking about us as the unease and protection of the writer of Hugh's treatment is that the HSE sought to challenge her capacity on two grounds right one was that her doula exercised undue influence on her and her decision wasn't voluntary so again that's really important they tried to say the decision of the pregnant woman wasn't a voluntary decision because of assistance she was voluntary assistance but she was having they tried to characterize that as undue influence and vitiating her consent and so that's obviously one of the pressures one of the things that happens in practice and it's really important that in this decision the court said no it wasn't right it was a voluntary decision and that assistance wasn't an undue pressure the second thing that's important about the capacity issues in that case and is that there there she seemed there was a misunderstanding of what the risk of uterine rupture was in the sense that she was reporting that it was a risk of 3% as a sink from a risk of about 10% now these again are not very evidence-based figures because the numbers of women who have c-sections in these contexts are tiny and so we have to take those statistics with the grain of salt at one level but the fact that there might have been a mistake in her under anding about what the doctor had said about the risk could have undermined a legal finding of capacity but the court said it didn't in this case so they didn't find that her capacity was undermined okay so in that instance we have a case which supports a right to refuse a c-section that sort of intervention in pregnancy and resists challenges in this context by the HSE to undermine her capacity okay so there might be stuff we could do with that but at the same time we all know that and there are lots of contexts in which capacity is challenged and has been found not to exist and is assumed not exists in an everyday way and so in moving and towards you know implementing this is the decision-making Act and thinking about the test for capacity in that context part of what we need to think about then is how the new test you know the requirement of understanding of using a weighing information of communication or retaining that information how we evidence that's right we shouldn't have to be the ones and doing all the work of defending that right but again that's something we can think about strategically in our peer groups in our support groups it's how we evidence that women who are being challenged on capacity grounds in an everyday way how they evidence that they have understood issues around fetal monitoring issues around and pregnancy health in general and and so that's going to that's something that's being contested obviously more with the context then the only protection is obviously in cases where capacity has been found to be lacking right and so in those contexts then and we're having in that context it's possible for the court to order and so and they're brought up earlier you know the fact that we have a lack of scrutiny as well in a sense of wardship decisions not getting scrutinized and that's one of the reasons why the project is so important and and so we don't have enough documentation really about some of these decisions but we know as Emma raised earlier that there has been a decision you know perform a mastectomy on a woman and who was living with schizophrenia and and was found not to be capacitated so in that context there has been a significant imposition of a surgical intervention against her well if we want to look to the court protection in England they have dealt with a number of cases where and where the authorities sought to a c-section against a woman's will in contracts where three or four the cases relate to psychosocial disabilities so women living with bipolar and or schizoaffective disorder there was two cases concerning women living with learning difficulties and autism so in those sorts of cases c-sections under the best interest test in the Court of Protection have been ordered against the wishes of the woman so even so that's again partly the context that contributes it's about that we can work against and we've been strategizing a bit about in response to these cases then is that they were often very rushed cases right there's a lack of management of the birth plan and a lack of anticipation of how to accommodate the woman's wishes and in managing pregnancy and and so we are seeing you know the difficulty we are seeing some progress in response to that now in the sense that thinking about the sort of factors you both raised the trauma of imposing an intervention like that or a trauma of you know poor birth experience and is being taken more seriously now in balancing the kinds of risks that have to be taken into consideration when making a best interest decision or a decision in those contexts so that's something but I said why the important whether this project is so important and is in in generating more legal consciousness more and experiencial expertise around the consequences of these sorts of interventions for women in pregnancy and inch and if we can feed that in to these decisions hopefully we make some more progress in terms of reducing the coercive levels of law that are that are at risk of being imposed on women still and pregnant people in this context so as we move hopefully through you know greater human rights protection and greater okay and greater and respect for people's wishes in in these contexts and on the basis of evidence of experience and we're talking about moving more to a model of dialogue and thickening out moving away from a negative conception of rights and just refusal of treatment to a more positive conception of rights that are supported and accessible in this context and that involved dialogue and figuring out together what is possible so that's the kind of shift hopefully we're trying to move towards we're not there yet obviously away from just a thin right to refuse treatment which is very uneven towards a fuller you know reproductive justice orientated model that involves dialogue and support okay law policy practice and how that shoots go to erode disabled people as in particulars on voice during pregnancy and childbirth so we're going to open the floor up to questions we have one there

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