Disability and maternity — speech at Oxytocin event

On Saturday 13 May 2023, we took part in the Oxytocin Collective Care conference which aims to “bring together art, performance and health care to investigate current debates in birth and motherhood/parenting”.

Along with other disabled mothers, Tracey Norton from the Disabled Mothers’ Rights Campaign spoke on the panel “Exploring the experiences of deaf and disabled people in maternity care”.

The organisers will put video of the panels online soon.

Speakers:

• Meghan Luton – Meghan is a Middlesex university midwifery lecturer researching deaf women’s experiences of maternity care .
• Natalie Whyte – Natalie is part of the Mum-PreDiCT project (exploring the experiences of pregnant people with 2 or more long term health conditions),user voice representative for the Midlands for maternity services, maternal medicine engagement lead for the West Midlands.
• Sahera Khan – Sahera is a Deaf, Muslim, BSL user and a freelance writer/creator, artist/actor, filmmaker and YouTuber. She is a Trustee of Deaf Ethnic Women’s Association (DEWA).
• Dr Hannah Barham-Brown (chair) – Hannah is a GP trainee in Yorkshire, Governor of Motability and Deputy Leader of the Women’s Equality Party with the portfolio for ‘Making Change Happen’. Between 2018 and 2022 she was a Council Member of the British Medical Association. Alongside her clinical and political work, she travels the UK giving talks about diversity and disability, in venues from the House of Lords to international publishing companies. She is a Fellow of the Royal Society of Arts, and works to support disabled people in politics, employment, travel, health and education.
• Tracey Norton – Tracey is a mother with an invisible disability whose severely disabled child was falsely taken into foster care to stop the financial support she had fought for so he could stay at home. She now supports other mothers, as well as campaigning for change with Support Not Separation and the Disabled Mothers’ Rights Campaign (part of WinVisible, women with visible and invisible disabilities) based at the Crossroads Women’s Centre, London.
• Dr Amy Kavanagh – Amy is an award winning disability consultant, activist and campaigner. She uses social media to share her lived experience navigating the world as a blind Londoner alongside her Guide Dog Ava. Amy has recently become a mother and believes in the need for greater representation and discussion of disabled parenthood. Amy is committed to celebrating disability, mobility aids and encouraging others to learn about the social model of disability.

Speech by Tracey Norton:

“The Disabled Mothers’ Rights Campaign is co-ordinated by WinVisible, women with visible and invisible disabilities. I’m a mother with a painful invisible disability and I have a severely disabled son who was wrongly taken from me when he was a teenager, and came home as soon as he turned 18, his health and disability much worse as a result of the trauma and neglect he received while in state care.  Disabled women are campaigning for our rights to start a family and keep our children, and to get the support we are entitled to under the Care Act and Children Act, and the UN Convention on the Rights of Persons with Disabilities.

WinVisible (women with visible & invisible disabilities) is a multi-racial grassroots group which brings together women with various disabilities and backgrounds. Many disabled women are mothers and carers for children, partners, parents and friends, on top of coping with our own disability or ill-health. 

WinVisible is part of the Support Not Separation coalition with single mothers, women of colour and asylum seekers/refugees, domestic violence survivors, breastfeeding advocates, kinship carers, psychotherapists, men and former social workers who are committed to defending mothers and children against the devaluing of the mother-child relationship which leads to unwarranted separation. We work closely with the Scottish Kinship Care Alliance, with Give Us Back Our Children in the US and with mothers in India and elsewhere – all who are fighting similar discrimination and abuse of power by professionals acting for the state and the private companies that profit from taking our children.

For the past 6 years SNS has held a monthly protest outside central family court in London, as well as a monthly self-help group meeting for mums fighting in family court.

These are some of the issues disabled mothers face from the time we get pregnant:

• Pressure by professionals throughout the pregnancy to have an abortion because they say we won’t be able to look after our children – abortion is legal up to the time of delivery, if authorised by a psychiatrist.
• Domestic violence: being disabled makes you more than twice as likely to be a victim of DV, and this – as well as being young or having grown up in care, or wanting a home birth, or being low income – can all be flagged up by midwives or any other health professional as a “safeguarding issue” which means we get referred to social services, where we don’t get support or help but come up against preconceived ideas and prejudices thinly disguised as concern for the well being of the unborn child.
• Once reported, babies can be taken at birth, often almost immediately and whilst trying to breastfeed and despite ward doctors and nurses saying they are happy with how the mother and her baby are doing. Sometimes mothers are “held captive” on postnatal wards while social services try to get a court to force us into a mother and baby unit or to put the baby in foster care on the way to being forcibly adopted. Mother and baby units are horrible places where the mother is completely isolated from family and friends and monitored 24/7. She has to “prove herself” by being denied any of the help she would normally get at home – how cruel and sadistic! Putting babies into “foster to adopt” placements disadvantages mums who are then being told that the baby has settled and it would be disruptive to move them, even if the mum has “proved” she can care for the baby.
• A Deaf mum told us “Hospital staff are quick to judge. Like with me — after my baby was born. They wouldn’t let me go home. My baby was crying, and I said to them, ‘No, it’s not like this at home, we have an alarm which wakes me up when my baby cries.’ They didn’t provide that in the hospital. I needed support with breastfeeding, they told me it would take two weeks to book an interpreter.”
• The bond between a mother and her child is first formed in the womb and research clearly shows lifelong trauma and mental health issues as babies grow into adulthood. A sudden and lasting separation from the mother can alter brain development and cause lifelong trauma. Yet this fundamental relationship is denied and devalued by the professionals who make decisions.
• Disabled mothers, single mothers, care leavers, are seen as unfit mothers.  Many of us are low-income and have high disability costs and energy bills, but are blamed for not being able to provide for our children. But poverty is not neglect and we want a Care Income for caring work we do.
• We know that pregnant women living in poor areas, particularly those of us of colour, are twice as likely to die than those living in the most affluent areas as well as 40% likely to suffer miscarriage. We also know that you are 10 times more likely to lose your children to care if you live in these areas.
• Social services take children from disabled mothers, including on the grounds that our children will be our carer in future, which they label as “future harm” to the child. But proper support for disabled mothers and families is what child carers need, not separation from the mother they love and who loves them. Councils say they have to cut adult social care, but pay private companies obscene amounts, such as £250,000 a year for one disabled child’s placement, in institutions like Hesley Group where abuse is rife.
• Our campaigning, including working with Channel 5 News has helped to put discrimination against mothers on the agenda. Parents (i.e. overwhelmingly mothers) with a learning disability are 54 times more likely to have their children taken into care, and those of us with a physical disability are also targets, especially for adoption.
• We are working on a Charter of Rights which we will use to pressure local Councils to implement our legal right to support rather than remove our children.
• We support the No Births Behind Bars campaign, which is demanding an end to putting pregnant women in prison, where newborn babies have died. 

Anyone who truly cares for the wellbeing of children must support mothers’ struggle to end these cruel separations. Mothers are the first protectors and should be supported.“