Sunday essay: single parenting with a disability – how my 9-year-old daughter became my carer in shining armour

Shakira Hussein (seated in chair) with daughter Adalya Nash Hussein. Photo by Leah Jing McIntosh. Author provided

My daughter started to describe me as disabled long before I was ready to do so myself. For several years after my diagnosis with remitting-relapsing multiple sclerosis, the most I was prepared to concede was that I had “a potentially disabling disease”, and having endured years of misdiagnosis and uncertainty, I wasn’t entirely confident that even this much was true.

Perhaps the neurologist who had dismissed the right-sided weakness that rendered me unable to walk without support as “a psychiatric issue” would turn out to have been right after all, notwithstanding the MRI that had revealed lesions scattered across my brain, or the lumbar puncture that had detected inflation in my cerebrospinal fluid.

Anyway, even if I did have MS, I was undergoing treatment that would hopefully hold it in check. I was sometimes temporarily disabled, I might be permanently disabled at some undefined point in the future, I was self-injecting my prescribed medication on a daily basis in order to ward off disability. But I was not actually disabled – not yet.

Adalya didn’t see the need for this type of tiptoeing around. “I’m sick of the soft, caring voices,” she complained as our lives were flooded with healthcare professionals, support workers and counsellors in the wake of The Diagnosis, but she understood their basic message clearly enough. Her mother was disabled and she was a nine-year-old young carer. For which, read: guardian, defender, bodyguard.

Adalya’s father had lived in Turkey since her early childhood, but we were very far from alone in the world. My brother and his wife lived around the corner from us in Canberra, my mother would fly down from Queensland to help out during moments of crisis, friends provided us with nourishing and delicious Indonesian, Malaysian and Lebanese meals. If we needed extra help, we only had to ask. But Adalya didn’t believe that anyone else could look after me as well as she could. She certainly didn’t trust me to look after myself.

Multiple sclerosis was not our only adversary. John Howard’s government was determined to force single mothers to shift from welfare to work and to punish Muslims for our failure to uphold “Australian values”. My PhD thesis on Muslim women and transnational feminism was years overdue for completion. The income I earned from tutoring and freelance writing was not enough to free us from dependence on Centrelink payments. A disabled, brown-skinned, Muslim, welfare-dependent single mother sounds like a hate figure from an Andrew Bolt column__, I thought gloomily to myself. Although of course, I wasn’t really disabled. Not yet.

‘I’m her little walking stick!’

When the MS was in remission, Adalya’s caring responsibilities were relatively light. But during flares, she took charge of the household duties, from grocery shopping to meal preparation to washing up. And having taken control, she would decide that the entire system needed an overhaul and set about emptying cupboards, rearranging storage space, consulting the internet for advice on cooking techniques and cleaning hacks, as I lay on the sofa, immobilised by pain and fatigue. By the time the flares subsided, she had become extremely territorial over what she now regarded as “her” domestic space and resisted any attempt to overturn her reforms.

“That’s not where the garam masala goes!”

“Since when? It’s always been—”

“Not anymore! I set up a new system!”

She was just as assertive when we were out and about. “I’m her little walking stick!” she would announce, fending off anyone else who offered me physical assistance. And in fact, I did prefer to use my daughter’s shoulder for support rather than be manhandled by whatever knight-in-shining-armour had decided to help out, as often as not by placing his hand on my bum.

“Adalya is very protective,” a friend commented.

“Only when it’s my mother!” she retorted.

I didn’t mind waiting in line to check in at airports (after all, I wasn’t disabled), but Adalya would march up to the counter to explain that her mother had multiple sclerosis and was in need of special assistance during our travels. Even I found her equal parts endearing and annoying, but so far as the airline staff were concerned she was 100 per cent adorable. Such a grown-up, sensible little girl looking after her disabled, brown-skinned-and-therefore-presumably-non-English-speaking mother! There was nothing I could do but settle back in the airport wheelchair and glare in Muslim as Adalya explained my lunchbox cooler full of prefilled syringes to the security staff.

She would sit in the audience during forums on the “the Muslim issue”, quietly reading her book but ready to leap into action if required. “Don’t think that you can pick on my mother just because she’s disabled! She’s still got a daughter who can beat you up!” she intervened during one particularly fraught community meeting. Of course, we all just laughed fondly. That cute little girl wasn’t strong enough to beat anyone up (and anyway, I wasn’t really disabled).

Although, after more flares, another round of MRIs that showed new lesions and a recommendation from my neurologist to switch to more aggressive medication, I was eventually convinced that I did, in fact, have multiple sclerosis.

‘I don’t want anyone to think we’re not coping’

If there was a support group for parents whose offspring are excessively mature and responsible, I didn’t know where to find it. And it wasn’t a problem that got you much sympathy at the school gate. But I couldn’t help feeling that Adalya was far too well-behaved for her own good. Her good conduct was a side effect of the multiple sclerosis and all the turmoil it had wrought. She simply couldn’t afford to rock our family boat, for fear that it would sink to the bottom of the ocean. And she rebuffed offers of help from outsiders out of concern that our two-person household would be judged and found wanting.

“I don’t want anyone to think that we’re not coping,” she told me as she straightened out the living room.

“She’d rather clean the kitchen with her own tongue than let anyone else across the threshold to help,” I confided to friends. “And other people have started taking advantage of her caring streak as well – neighbours, the parents of some of her friends. It’s going to make her a magnet for every shitty male on the planet.”

Her plans for the future were built on the assumption that her role as my carer was only going to become more demanding over time. “When I grow up, I want to have an interesting job, like a writer or an artist. Not just a job that makes a lot of money. But I want to earn enough money to be able to look after you.”

“Oh sweetheart, you’re not going to have to look after me. I’ll be okay.”

“Don’t worry, I’m not going to spend all my money on you,” she reassured me. “I’ll need to save some of it for my own children.”

As touched as I was by this vision of Adalya as the breadwinner for me and my future grandchildren, I didn’t want her life plans to be dominated by her role as a young carer. The multiple sclerosis had made a train wreck of my own career aspirations; I refused to let it blight hers as well. I tried to reset out relationship by telling her that while I was the captain of the household ship, she was my trustworthy First Mate. She did not take this demotion well.

“You talk to me as though I’m the bloody cabin boy!”

Mutiny was only avoided by acknowledging that I had overstepped the boundaries of my authority. How could I claim to be the captain, when I spent so much time below deck?

Calling out ableism while avoiding inspiration porn

“Good anecdote, bad reality.” Carrie Fisher’s words of wisdom had long been my talisman when dealing with difficult experiences, whether in the form of racism or misogyny or both. But multiple sclerosis was a bad reality that made for a fucking boring anecdote, so far as I was concerned. For the first time in my life, I was confronted by a difficult experience that I had absolutely no desire to write about.

Most of what I’d read about disability was what Stella Young would later term “inspiration porn”. I had no desire to write, let alone star in, that type of motivational feel-good story. Besides which, there were long periods of time when I was physically incapable of writing anything at all – when my vision was too blurred to read, my malfunctioning motor skills compromised my ability to type, when the vertigo was so severe that even turning my head on my pillow was enough to make me throw up and the pain was too all-consuming to allow space for coherent thought.

And once I’d recovered, there always seemed to be more urgent topics to write about than multiple sclerosis. My body had not been injured in a US drone attack on my family’s village or poisoned by toxic chemicals due to negligence by a multinational corporation. It was just enduring friendly fire from the autoimmune system that was supposed to protect it. It hardly seemed important enough to be worth writing about. And anyway, I had a thesis to finish.

But as the multiple sclerosis occupied more and more of my time and attention, I began to recognise the parallels between ableism and my familiar territory of racism and sexism. While the multiple sclerosis was not an injustice in itself, I had experienced injustices during the long, bumpy, road to diagnosis and in the difficulties that I faced in obtaining timely support and treatment.

Reading disabled writers like Harriet McBryde Johnson and Stella Young made me realise that it was possible to write about disability without indulging in inspiration porn. Which was convenient, as the continued onslaughts against my body meant that I could no longer kid myself that I wasn’t really disabled.

Multiple sclerosis ‘as much a part of’ my daughter’s identity as mine

Adalya had inherited my graphomania, filling notebook after notebook with (I assume) deep and meaningful thoughts. Emotional conversations would end with her stomping off to her bedroom, declaring “another chapter for the tragi-comic coming of age memoir!” as she slammed the door behind her. I longed to take a sneak preview, but the hand-drawn snarling gargoyles on the notebook covers, alongside proclamations of PRIVATE, TOP SECRET and KEEP OUT, were enough to deter me.

But the realisation that she sometimes featured in my own published writing prompted her to go public with her own. She demanded right of reply to an article that I published after Julia Gillard became Australia’s first female prime minister, in which I’d described Adalya as ‘yelping about #historyinthemaking! as part of a bid for a #dayoffschool and a #triptoParliamentHouse’.

“You quoted things I said when I was asleep! You never quote things that make me sound awesome!”

She channelled her indignation into writing what the editor described as an “out-of-the-mouths-of-babes thing” about the importance of compassion in politics and the lack of it in then Opposition leader Tony Abbott. Not bad for a first-timer, I thought. She certainly proved that she wasn’t just using one of the most important events in Australia’s political history as an excuse to skip school for the day.

I learnt my lesson from my mistake and was careful to obtain her consent when I was invited to contribute to an anthology about motherhood a few years later. However, by the time the proofs came through, she had long since forgotten that conversation.

“What the— I never gave you permission to write about this!”

“Yes, you did. You asked me whether it was a paid gig and when I said it was, you said ‘go for it!’”

“Look, I gotta say that does sound like you,” one of her friends agreed, and Adalya grudgingly conceded that it sounded like a plausible scenario. A scenario that that once again provided her with the pretext to exercise her right of reply. “Just another side of the story,” she told me as she sat down to write an essay for a youth literary journal about growing up with a mother with multiple sclerosis. At nineteen, she was ready to provide a public preview of the tragi-comic coming-of-age memoir we had joked about for so long.

I read it with a sense of trepidation. Of course, I had lived through the events she described, but that didn’t make it any less difficult to read about them in my daughter’s voice. Clearly I had failed in my attempts to quarantine her from the impact of multiple sclerosis. It had become as much a part of her identity as it is of mine. But I have no complaints about the thoughtful, generous and incidentally funny young woman who wrote that essay.

In some way, it feels as though every facet of my life has been shaped by my mother’s health.

As her nerve cells were eroded by her body, I was built from the tools I tried to fix her with – tools forged from my mother’s raw materials; her thirst for understanding, her front of fearlessness to everyone including herself.

Today Adalya’s life has expanded: her concerns for my day-to-day welfare abated enough for her to move away from home to live with her partner. She was quick to reassure me that that she would continue to be available to support me when required, living a short distance away in a home with an accessible bathroom and a ground floor bedroom for me to sleep in, if need be. I couldn’t “cure” her of her role as a young carer, any more than I could cure myself of disability.

She has not so much grown out of that role as grown beyond it. And while I continue to make occasional cameo appearances in her writing as the comical, eccentric mother, she now publishes on topics ranging from music to art to women in science. The full-length version of her tragi-comic coming-of-age memoir remains unwritten … so far as I know.

This is an extract from We’ve Got This, edited by Eliza Hull (Black Inc.)

This essay was written by: