“I’ll never be a mum,” I cried as the tears rolled down my cheeks.
This was the first thing I said to my neuropsychologist, and that would be the theme for the next hour.
I can’t believe it’s now been seven years since I was diagnosed with ataxia. Seven years since my whole world turned upside down.
I’d dreamt of being a mother ever since I could remember. It was all I wanted. When I was diagnosed, that’s the first place my mind went to. I’ll never be a mother; I truly believed that.
A disabled mum?!
Nearly 2 years have passed since our little girl arrived, and it has been an adventure. There have been highs and lows, laughter and tears. But having a little human come running for cuddles every time I fall over makes it all worthwhile. She is already more empathetic than lots of adults, so it is usually me comforting her when my body doesn’t play ball. We can’t wait to watch her turn into a tolerant, kind and gentle person – that is, when she’s not hungry!
She has already learnt that her mummy cannot do what others can. She knows that I can’t carry her and that cuddles take place on the sofa. To bring me her toys instead of me carrying everything. Sometimes she walks backwards or waddles like a penguin (I do wonder whether that’s her copying me!). Because she is so independent and knows her own mind, I often forget she’s only a toddler.
They say it takes a village. What I have learnt is that this village is the kindest, most understanding and willing to help. It really means the world to know you are not alone, because every parent has their challenges. Mine are just more visible. I’m fortunate that it is obvious when I need an extra pair of hands.
When I was first diagnosed, I didn’t use a walking aid for years, mostly due to ego. Now I love my rollator. It has given me my independence back, and people can clearly see my disability and are a lot more tolerant. When I’m out with my daughter, I use her pram, which I’ve added handbrakes to. At first glance, I look like any other mother, and I have to admit I quite like that. But my disability becomes invisible again, and people aren’t aware I need extra help. And the looks and tuts start rolling in once again.
My heart still breaks, and I shed a little tear when I can’t play with her in the park like all the other moms do, but she has become so sociable, I can’t help but smile watching her confidently interact with other parents and children alike.
So, maybe parenthood and disability can co-exist, just a little differently.
Society puts a lot of pressure on women, including becoming a mother. That’s our role, right? I won’t lie; I’ve made the mistake of feeding into this ideology of asking someone if they want children.
I look back and am embarrassed about how insensitive that question is. Maybe they can’t, maybe they’ve lost a child, or maybe they just don’t want to. And that was none of my business.
Ever since I could remember, I have always been told I’d be a great mother, so I’ve always gone along with it. Never questioned or doubted it. I love children, so of course I’d be. I was born to be.
Since being diagnosed, I carried on this narrative of never stopping to ask myself: “But is this what I really want? Did I want to be a mum with a disability? Was it fair to me or the baby? Would society judge me?”
I was brainwashed into focusing on the things I couldn’t do instead of the abundance of things I can. I’d much rather have my child remember their mother as being affectionate, nurturing, and supportive than whether I could run around a field with them.
A lot of disabled people are infantilized. We are often patronized and spoken to in a condescending way. We are often regarded as less capable because of our disability and applauded every time we achieve something that our able-bodied peers can do.
Disabled adults may be made to feel like we don’t belong in the grown-up world. “Disabled and a mother, yeah right,” I heard one woman mutter under her breath. Sometimes the news that I am a parent comes as a shock.
Being a parent has legitimized me. I am now a real adult, and people don’t infantilize me. That’s how it feels anyway. It’s not just others who take me more seriously, but I take myself more seriously, too. I no longer feel useless or a burden because my daughter needs me. It’s empowering raising a child in the face of adversity and challenges. I’m proud of myself for that.
Motherhood has changed my life. It feels good to feel like I belong to another community. To have problems and go through challenges that are more universally understood. To feel “normal” and seen as a mother not just a disabled person.
– Written by Tallulah Clark
