Creating the Conditions to Thrive: Race, Disability and Trauma in Maternity Care

During Black Maternal Health Week, I want to begin somewhere we do not often start.

With joy.

With what it should feel like to be held, safe, listened to and supported through pregnancy, birth and the postnatal period. With the possibility of care that allows people not just to survive, but to thrive.

Because that is the standard we should be aiming for. Not survival, but dignity, safety, joy and wellbeing for parent, baby and community.

Too often, traumatised parents are told to “just be grateful the baby is healthy”, as if gratitude can undo physical and psychological harm.

Birth should not be something we are expected to survive in order to live. It is one of the few universal experiences we all share. Yet for Black and Brown women and babies, survival itself becomes less certain.

“The grass is greener, where you water it” - Olivia Dean

Camara Phyllis Jones’ allegory of the gardener and the flower boxes reminds us that outcomes are not simply about individual strength. Flowers do not thrive because they are inherently better. They thrive when they are planted in soil that nourishes and provides for them. 10936998.pdf

The same is true in maternity care.

When conditions are right, people can thrive. When they are not, people will struggle, often masking it; not because they are incapable, but because the environment was never designed with their needs, strengths or capacity in mind.

At a time when services and resources are both overstretched and being digitised, those already experiencing health inequity risk facing even greater barriers to access, continuity and timely care. I spoke about this in an article on Neighborhood Health: Inclusive neighbourhood care: Systemic inequity and the role of tech | Mayden

For many Black mothers, particularly those who are disabled or neurodivergent, maternity care can feel like an environment that requires constant navigation and self-advocacy just to access basic safety.

I also spoke about this when I gave evidence to Parliament as part of Baroness Amos’ maternity enquiry, supported by our amazing Victoria @neurodivergentbirth. I urged services to see us as whole people, not a set of symptoms or circumstances, and to adopt personalised approaches to risk across maternity and mental health care.

When systems fail, the consequences are critical

Inequity in maternity care is not abstract. It has real, measurable consequences.

Black heritage birthing people are at higher risk of hypertension and cardiovascular complications before, during and after pregnancy.

Neurodivergent people face increased risk of perinatal mental health difficulties, yet are also more likely to be misunderstood, misdiagnosed, or placed on inappropriate care pathways. Underdiagnosis of ADHD and autism, alongside disproportionate diagnoses rates for BPD + EUPD, means many enter maternity and mental health systems without the right recognition, support or adjustments and end up over-represented in Social Care.

Disabled and neurodivergent people may also be navigating additional conditions such as POTS, MCAS, Endometriosis, and in my case, hypermobile Ehlers-Danlos Syndrome, which carries known anaesthetic risks and an increased likelihood of cerebrospinal fluid leaks following epidural or spinal procedures.

When these risks meet racism, ableism and trauma, the pattern is familiar.

Symptoms are minimised. Pain is not believed. Investigations are delayed or do not meet “thresholds”. Sensory and communication needs are ignored. People are labelled as “complex” instead of being supported.

In 2024, due to an untreated spinal fluid leak, I developed meningitis (headache, stiff neck, light sensitivity). It was initially dismissed because a senior clinician was not familiar with how a rash presents on darker skin. A student doctor, with more recent training, challenged this and insisted on an emergency lumbar puncture, effectively pushing against hierarchy to ensure I received life-saving care.

I had arrived by ambulance and was left on an A&E floor for over nine hours, repeatedly told it was a migraine. I was ignored, dismissed and terrified. At one point, I was asked if I wanted to sign a Do Not Resuscitate order, despite being 30 with three young children at home. I remember saying, “please do your best to get me home to my kids”... My medical notes referring to “anxiety” did not appear to increase empathy. Instead, they contributed to me being treated as a problem to manage, rather than a patient in need of urgent care. After 48hours I was eventually started on IV antibiotics to treat Meningitis, 47 hours later than recommended by NICE guidelines.

This is what happens when care is not designed around the whole person. When the environment itself is unsafe, trauma becomes predictable. We need to be actively anti-racist in order to prevent harm and avoidable deaths.

This is a call to action

If we want different outcomes, we need to build and sustain different environments.

Healthcare professionals must move beyond cultural competence towards cultural safety and humility, from equality to equity. Listen when people say something is wrong, act early on clinical risk, and make reasonable adjustments as standard.

Systems and commissioners must invest in by-and-for services, design with intersectionality at the centre, and use data across race, disability and neurodivergence to drive accountability.

Communities and allies must continue to advocate, challenge poor care, and refuse to normalise traumatic birth experiences.

Researchers and academics contributing to policy must apply an intersectional lens from the outset, or acknowledge where this has been missing and create space for those with lived and professional expertise.

An important publication from some inspiring colleagues at Coffee Afrik, the Race and Health Observatory and the Centre for Mental Health explores these issues in depth, particularly the role of trauma-informed care in responding to racialised communities. CentreforMH_Trauma-informed_care_and_racialised_communities.pdf

At Neurodivergent Birth CIC, we are working to bridge this gap through Trauma-responsive and Neuroaffirming training that equips professionals to better understand, recognise and respond to the needs of neurodivergent and marginalised birthing people.

From survival to thriving

We cannot talk about neurodivergent birth without talking about race. We cannot talk about Black maternal health without talking about disability.

These are not separate conversations.

People at this intersection do not need more awareness alone.

We need care that sees us fully. We need environments built with us in mind. We need the conditions to thrive.

Because joy should not be the exception. It should be the expectation.

It is our birthright.

Ruby’s JOY LIST:

Books: Maame Jessica George, All About Love Bell Hooks,  Music: Olivia Dean The Art of Loving, RAYE This Album May Contain Hope Jessie Ware Superbloom. Show: Love on the spectrum. New Amsterdam.

RESOURCES AND LINKS:

Black-led / Black-focused ND & SEND parent support

• Black SEN Mamas (BSM) — advocacy, SEND law support, therapeutic interventions, national online community. Site + NAS directory listing. Black SEN Mamas+1

• Black Special Needs Parents Support Network (BSNPSN) — UK network amplifying Black families raising disabled children. Black Special Needs Parents UK+1

• National Black Parents Association UK (NBPAUK) — signposting platform uniting and supporting Black and Dual-Heritage families across the UK. nbpauk.org

• Include Me TOO — national charity supporting disabled children, young people and families from diverse communities, with culturally responsive SEND peer networks and outreach. Include Me TOO+1

• Neurodiverse Connection: Black & Autistic Support Group — peer group for Black autistic adults, launched 2023; useful for ND parents seeking identity-safe space. Neurodiverse Connection

Perinatal, maternity & mental-health orgs centred on Black families

• Five X More — national campaign improving Black maternal health; resources for families and professionals, plus the 2025 Black Maternity Experiences report. FIVEXMORE+1

• The Motherhood Group — Black Maternal Mental Health Project with MMHA and Centre for Mental Health; community programmes and policy work. themotherhoodgroup.org+2Maternal Mental Health Alliance+2

• CAHN Perinatal & Infant Mental Health (PIMH) — Caribbean & African Health Network programme supporting Black birthing people and partners across the perinatal period. PIMH CAHN+1

Neurodivergent-affirming perinatal support (open to all, relevant for Black ND parents)

• The Neurodivergent Birth Company (ND Birth CIC) — UK-wide training and support for ND people in pregnancy, birth and beyond; CPD-certified training for birthworkers. ND Birth+1

• Autistic Parents UK (APUK) — national autistic-led charity for autistic parents; resources, peer spaces and education (not Black-specific, often collaborates inclusively). Autistic Parents UK+2Autistic Parents UK+2

• AIMS (Association for Improvements in Maternity Services) — articles and guidance on autistic/ND pregnancy and neurodivergent-friendly birth support. AIMS+1

Rights, advocacy & anti-racism in maternity (useful for escalation and service change)

• Birthrights — Racial Injustice Inquiry and report Systemic Racism, Not Broken Bodies; rights-based tools for safer, respectful care. Birthrights+1

• RCOG response / BMJ coverage — clinical bodies acknowledging the inquiry’s findings; handy for influencing local services. RCOG+1

Wider ND/SEND resources with Black-community strands

• National Autistic Society: Autism and Black, Asian and Minority Ethnic people — barriers and tailored guidance; useful signposting for families. National Autistic Society

• Ambitious about Autism — BAME Parent/Carer Group — community space for Black, Asian and minority ethnic families. Ambitious College

• ALLFIE (Alliance for Inclusive Education) — Disabled People’s Organisation campaigning on intersectional equality for Black Disabled people and families. ALLFIE

• Family Fund: “Support, not suspicion” — insights on how services should better support Black and ethnic-minority families of disabled children. Family Fund

• Urban Health: Better SEND support for Black and mixed-heritage families — research and recommendations you can cite in bids or local advocacy. Impact on Urban Health

Scotland / regional but often open UK-wide (online access)

• SEMA — Scottish Ethnic Minority Autistics — peer support and multilingual resources for Black, Brown and ethnic-minority autistic people; many events are online. Medium

Black doulas, trainers & directories (UK)

• Abuela Doulas (training + directory) — first Black-owned UK doula course; public directory to find Black and culturally aligned doulas. Abuela Doulas+1

• Mars Lord — Abuela Doulas founder; longtime doula, trainer and activist for equitable maternity care. Mars Lord Coach+1

• Kemi “Birthjoy” Johnson — UK birthkeeper, educator and speaker; former midwife; widely followed for physiological birth advocacy. Kemi Johnson Birthkeeper+2Instagram+2

• 2 Dope Black Doulas — Black doula hosts sharing practical birth support via podcast and socials. Spotify+1

• Black Doula Directory (UK section) — searchable directory to connect Black families with Black doulas nationwide. blackdouladirectory.com+1

• Precious Bambini — preciousbambini.co.uk Bristol-based “birth and beyond” consultancy offering antenatal and postnatal doula support, parent-education classes, pregnancy/baby yoga and baby massage, with flexible packages and WhatsApp support. preciousbambini.co.uk+2preciousbambini.co.uk+2

• Dua.Doula (Instagram) — @dua.doula Bristol doula sharing practical birth prep, affirmations and everyday insights from pregnancy through early postnatal; contact and updates via Instagram. Instagram

Black birth world changemakers (UK)

• Tinuke Awe & Clotilde (Clo) Rebecca Abe — Five X More (co-founders; national campaign, tools and training; 2025 Black Maternity Experiences report). FIVEXMORE+1

• Sandra Igwe — The Motherhood Group (founder; Black Maternal Health Conference UK; Black Maternal Mental Health Week UK). Sandra Igwe+1

• Dr Christine Ekechi — RCOG Race Equality spokesperson and Taskforce co-chair; prominent clinician-advocate for safer, equitable care. Dr Christine Ekechi+2RCOG+2

National orgs & campaigns relevant to Black ND/SEND parents

• Five X More — advocacy, resources and professional training; widely cited across NHS and media. FIVEXMORE

• Birthrights — Racial injustice resources for asserting rights and challenging poor care. Birthrights - your human rights during pregnancy and maternity care

• Tommy’s x Five X More helpline & resources for Black and Black-mixed heritage parents (incl. loss support). Tommy's+1

• Black Midwives Network UK — peer network elevating Black midwifery leadership and inclusive practice. Homepage - Black Nurses & Midwives UK black nurse midwives midwife uk london england health

UK-wide mental health (good for Black ND/SEND parents & birthing people)

• Black Minds Matter UK (BMMUK) — free, time-limited therapy with qualified Black therapists. Self-refer online. Black Minds Matter UK+1

• BAATN (Black, African & Asian Therapy Network) — UK directory to find Black and global majority therapists; groups and resources. BAATN

• Nafsiyat Intercultural Therapy Centre — intercultural psychotherapy, multiple languages; London-based with wider referrals and groups. Nafsiyat Intercultural Therapy Centre+1

• Black Thrive — systems-change charity focused on Black mental health; local partnerships (Lambeth, Haringey, Birmingham) and research hub. Black Thrive Global+1

• Barnardo’s Boloh Helpline — culturally informed emotional support, practical advice and therapy for Black, Asian and minoritised families (phone, web, multiple languages). Barnardo's Helplines+1

• Mind — perinatal mental health info and self-help; Infoline 0300 123 3393. Mind+1

• Nilaari — Black-led mental-health charity offering culturally responsive talking therapies (useful perinatal adjunct). Home - Nilaari Agency

• Rethink Mental Illness — advice line 0808 801 0525 for rights, care pathways and carers’ support. Expert Advice Hub+1

• PANDAS Foundation — perinatal mental health charity, helpline, email and groups (parents and partners). PANDAS Foundation UK+1

• Action on Postpartum Psychosis (APP) — national peer support, forums, café groups and training around PP. App Network+1

24/7 crisis & immediate help

• Samaritans — free, 24/7 listening line 116 123; web resources. Samaritans+1

• Shout 85258 — free, 24/7 text support (“SHOUT” to 85258). Shout 85258+1

• NHS urgent mental health — how to access local crisis teams now. nhs.uk

Perinatal-specific (national)

• Maternal Mental Health Alliance (MMHA) — national hub for perinatal services, info and signposting. Maternal Mental Health Alliance

• NHS perinatal mental health info — symptoms, when to seek help and routes in. nhs.uk