Content warning: references to ableism and medical gaslighting

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Being a slightly awkward human and a disabled parent are integral and wonderful parts of who I am. I took around 13 years to use the word ‘disabled’ as part of my identity, let alone expand to adding ‘disabled parent’ to my repertoire.  

I was diagnosed with a neuro-muscular illness – a progressive type of Muscular Dystrophy – in 2009, when my first child was 18 months of age. A phone call to the GP was made the day I fell full flat on my face – on cement – whilst walking my daughter in her pram. Somehow, I still had my hand on the pram handle when I fell, leaving my baby gazing down at me, non-plussed. She still had a firm grip on her favourite pink bunny and sat suckling her dummy (in the style of a gratified Maggie Simpson). We made it home that day – me, battered, bruised and teary; my baby, unnerved, delighted with her bunny and demanding food.

I was initially, and then repeatedly, told I was ‘just tired’, ‘clumsy’ and a ‘new mother’ I stood firm and advocated for myself to receive a diagnosis. I have no doubt that a number of people reading this know all too well how tenuous a definite diagnosis of any distinct chronic illness or medical condition can be. The feeling of relief that there is something, along with the leaden heart realising that there is something.

And that was it. Here is your diagnosis, thanks for coming along today, please shut the door on your way out. What was going to happen to me? What did the diagnosis mean? How was I going to parent? The words ‘disabled’ and ‘disability’ were never used and I certainly never thought of them for myself.

I couldn’t find any books or helpful information on parenting with disability. When searching for playgroups or support networks for parents with disabilities, I was met with radio silence. Where were the parents like me? Were there any other mum’s like me?  

Thinking that I had to mask my physical issues as best I could, I went with my child to all the community hall and playgroups, a weekly mothers group, and library story-times. I struggled, physically and emotionally. Pasting a smile on and pushing down the physical pain of trying to keep up with other parents. Watching all the other Mum’s, Dad’s, grandparents and carers lifting their children, dancing with their children, going on jumping castles, trampolines. I avoided the things I couldn’t do. I craved to be the person that could blend in with all the ‘normal’ families.  

Although I had fought to receive a diagnosis, I became an expert at denying the reality of my progressive illness and didn’t understand the concepts of medical model versus social model. I went back to work part-time and often wondered if it was common to feel so constantly fatigued and in severe pain. I over-compensated by people pleasing because I felt that I had failed people – especially my family – by ‘getting sick’. If I could turn back time, there are definitely things that I would change!  

I was also told I could not have any more children. Not possible, my body wouldn’t cope, it wouldn’t be worth the risk, and that I needed to accept my fate.  

The medicos were wrong.  

I could, and did, fall pregnant again in 2010. A son. Terrified of everything I’d been told could go wrong, I wept every single night of my pregnancy. I was offered a termination in the early stages of my pregnancy. I declined. Upon reflection, even though the medical care was professional it really was all medical model stuff. I was presented with the challenges and impediments and how hard this would be for me and my body, with minimal conversations about support options, coping strategies or the importance of simple joy. However, acknowledgment is due to the specialist obstetrician who was considerate and showed genuine compassion during our appointments.

My son arrived via cesarean in 2011. So, I had a rare neuro-muscular illness, two young children at home and a husband working full-time and travelling consistently as part of his job. Despite having a cesarean I was up and about within a week or two, attending appointments, play-groups, and food shopping etc. The hospital arranged for an Early Intervention Consultant (EIC) to conduct home visits, semi-regularly. They were making sure my son was well cared for and not showing signs of muscular dystrophy.  Not so much an offer of support, but to check if my son would be like me.  Amazingly our Early Intervention Consultant was brilliant, switched on and caring. She was, and still is, one person that is genuinely passionate about disability needs and accessibility rights and I am forever thankful she came into our life.  

When our EIC encouraged me to contact Disability SA for home support, inwardly I cringed.  I needed home help and support, but I wasn’t using the word disabled about myself.  I just had an illness.  Of course, now I’ve learnt that my own attitude was due to a lifetime of ableist conditioning.  

When my marriage ended in 2014, I moved out from our family home with my two young children, then aged 6 and 3. I clung on to sheer determination and vowed to use all the strength I had to keep going for my children. I still didn’t use the word disabled.

I had both children in my care almost full time. Any day or weekend the kids were not with me, I used that time to cook, clean and wash. I cried because I missed my kids greatly. I sobbed with exhaustion. The physical and emotional stress of a tricky divorce and being thrust into sole parenting impacted my health further. I became very ill after battles with Influenza A and B, chest infections and the general business of living with muscular dystrophy.  

Even when NDIS was available to me, finding consistent and trustworthy support has been challenging. Finding support workers is a whole other story!

Throughout all the challenges, caring for the kids has remained my number one priority. I changed limitless nappies, made food that was rejected or thrown on the floor, cuddled sleepy children in downy-soft flannel pyjama’s and watched movies under blankets on a Sunday afternoon. I’ve gagged from washing bed-sheets and clothes that had been vomited on, laughed at my kids’ antics and cried when the really hard days seemed to never end – like when experiencing excruciating pain or being excluded from community.  

I am an ordinary mum who loves her kids and worries for them as they grow and blossom into teenage-hood and independence. I cook gourmet meals some nights, order takeaway on others and take the kids to school. They have friends sleep-over and sometimes they go to sleepovers. I am a resolutely down-to-earth kind of parent and absolutely not a perfect one; sometimes I get cross and frustrated and use swear words. I also happen to be a disabled Mum.  

At times, I have felt unfairly judged as a disabled mum, but I have learnt to be confident in my ability to parent. The expectations of others and being told what I ‘should’ be doing rather than ‘How can I help?’ has, at times, been disappointing and hurtful. I don’t fit the societal norms of what being part of a family should look like and it makes people uncomfortable. I’ve embraced the lightbulb moment of knowing that one-size-fits-all parenting does not exists. Recognising my worth as a Mum – a disabled Mum – was helped immensely when I read the anthology, aptly titled We’ve got this: Stories by disabled parents in 2022.  

Reading the stories in We’ve got this: Storied by disabled parents opened up a brilliant new parenting chapter for me and taught me about the myriad of families that parent with different disabilities. Parents with disabilities are not to be kept under rocks, remain tales of folklore or cause abled parents to gasp with shock. We do exist.

It has taken me several years of re-learning attitudes and letting go of my own ableist beliefs to know that I am a disabled parent. I am also an ordinary parent that wins at parenting some days while on other days I pretend I know what I’m doing and wing it. While I’ve long yearned for a ‘real-life’ people group for disabled parents but with online communities growing, connecting virtually with other disabled parents has been delightfully helpful.

As a parent with a disability alongside chronic illness, I am not a hero – I’m not particularly brave, nor anyone’s inspiration porn for showing up every day. I’m a Mum who is trying to raise a couple of kids to go out in our magnificent world and be civilised humans, who remember to call, text or visit me occasionally. I continue to take up space as a disabled, capable - albeit a slightly awkward mum – I’ve got this!  

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