Make Motherhood Inclusive

My experience of
—disabled motherhood

by Hilary Walker

Disability, mobility impairment, medical condition - however you want to label it, I was born with spina bifida. And I am now a 34 year old mum to a wonderful 21 month old daughter.

More than just damaged nerves in my spine, this 'challenge' has shaped my character, and I hope helped broaden my outlook, making me determined and passionate (feisty, my hubby would say!). It can mean being in the minority at times, with some questioning me about what I'm capable of. I guess that sometimes leaves me feeling that I have to prove all that I can do - that I’m not held back just because I may face physical barriers.

Many people with my condition use mobility aids like wheelchairs and although I don't, as I have a milder form of it, my limp is what people see. But this doesn't tell the whole story. Seven surgeries on my back, legs, and feet, mostly before the age of 14, daily medication and some severe bladder problems still haven't prevented my body to grow and give birth naturally to a child. I know this can be a painful subject for some women...but to me it was a gift.

Although pregnancy wasn't exactly the easiest ride (9 days overdue with my 10lb baby - eeek!) I'm amazed with what my body has been able to do. Motherhood is bringing up completely new challenges though and I'm rapidly learning how to manage my health around meeting the needs of my kid. Most days I just push on through the tiredness, as many of us parents do, but for the past year I’ve had a pressure sore on my foot. So I’ve had to juggle being the primary carer, resting enough, work and getting to hospital appointments child-free. At times it can be overwhelming, but then the joy I experience when I feel able to chase my little one around the park (sometimes she runs faster than me!) as she squeals with delight just makes it all worth it.

I had to scour online to find even one personal experience similar to mine to help me gear up for what pregnancy, birth and babies might entail for me which I guess was disappointing and somewhat isolating.

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My obstetrician was amazing as had delivered many babies of mothers with spina bifida before but I don’t know any of these mothers. The risks and options within a hospital birth only became apparent throughout my pregnancy as all of our bodies respond to growing, and birthing, a baby differently.

Physical and social environments massively impact how disabling an impairment can be so I identify with the label ‘disabled’ quite fluidly. It often feels too personal, too vulnerable, to discuss my condition and how it affects parenthood when chatting with new parents and carers I meet at playgroups, as we scramble around on the floor! I’m open with my husband, close family and a few good friends but I’m seeing the importance of starting to connect with others who might have more similar lived experiences to me; mums managing their health conditions around the amazing exhausting privilege of caring for a baby.

We can only know what common ground we share as mothers and carers by being more open with our stories. Whether we are grappling with pain, coping with that mundaneness of medical self-care, overcoming barriers (whatever that means for each of us), or seeing or feeling we are in the minority in a situation, let’s begin to open up our stories to each other.