Outsider to Insider: Rethinking mothering support

Image of Marjorie walking with her young son  Image of Marjorie cuddling her young son while seated in her wheelchair 

This week I had the great privilege of attending a lecture given by Dr Marjorie Aunos. Marjorie is both a colleague and friend, from the West Montreal Readaptation Centre in Canada. She has made a huge contribution to what we know about people with intellectual disability (ID) who are parents, and is a world expert in the field of parenting with ID.

In January 2012, on her way to work, Marjorie's car slipped on black ice into the path of an oncoming truck. In a quarter of a second she became a paraplegic. And her life changed.

There were skills to learn, and skills to relearn. There were long weeks in a hospital bed as her body recovered. One of Marjorie's greatest concerns was, "How will I care for my son?"

Women with disabilities are vulnerable for a number of reasons. Mothers with disabilities are even more so. Support services for people with disabilities are typically ill-equipped to deal with the complexities brought about by parenting.

Children don't always follow the rules. They are unpredictable. What meets their needs one minute, might create a meltdown in the next. Marjorie's son was 16 months old when she had her accident. She is, by choice, a single mother.

Women with disabilities and significant mental illness are significantly more likely to have their children removed from their care. Very often this is not because of evidence of abuse or maltreatment, but because child protection services can't believe that a woman with a disability can provide good enough care for her child.

When a woman with disabilities is also a mother, questions are often raised. For example, how can a mother properly supervise an active toddler from a wheelchair? Or, how will she recognise what her child needs if she has an intellectual disability? But the answers, rather than seeking solutions, are often couched in prejudice and assumptions about what she is unable to do.

For Marjorie, this meant weeks lying in a hospital bed, watching the door and waiting for a child protection worker to walk through it. She had all her answers prepared. She was ready to fight for her ability to mother her child.

I was deeply struck she drew on my own research to describe her experience. In 2012, with Prof Llewellyn, I published an article describing research into the experiences of women with intellectual disabilities who had their children involuntarily removed from their care. I have since been involved in some research about the experiences of mothers with significant mental illness who have had their children removed.

The women who shared their experiences with me faced significant socio-economic disadvantage and some struggled to provide everything they wanted to provide for their children. All loved their children deeply and wanted the best for them. None doubted themselves as mother of their children. When an authority took their children from them they suffered paralysing grief and loss.

Before her parenting was even questioned, Marjorie described her fear that an external agency would deem her an unfit parent and take her child from her care. How could she prove her parenting competence from her hospital bed? The imbalance of power between mother and decision maker was never more stark to her.

Context and support play a huge part in how we all care for our children, and manage our daily lives. Few of us are islands, nor should we be treated as such. Very often it is women who are primarily responsible for meeting the needs of others in their households, particularly when it comes to children. And very often, it is the support of those around us, who enable us to do the daily juggle.

Marjorie is a fantastic mother to her son, now 6 years old. He was never taken from her. She mothers as the rest of us do: with support from those around her, including, at times, professional services.

At Dinner on the Table we think there's a better way to support women made vulnerable by disability. Women should never be asked how they will care for their children alone. We're creating a cost effective way of meeting the needs of women, as well as the needs of those they are responsible for. And, you know what? We're meeting your needs too.

And that changes the disability services game.

Other articles:

Work-life balance is a myth

Child in a school uniform holding a school bag with a green plaster cast and slingWork-life balance is a furphy.

There. I've said it. Out loud.

Sorry to burst your bubble. Or perhaps you made that discovery ages ago (and if you did, why didn't you tell me?)

I don't think that's the end of the story though. While it might not be balance, it just might be something else.

Last week I had the great fortune of spending three days in Melbourne as part of an incubator program for entrepreneurs. Fabulous. Great discussion. Great coffee. Great brain food. (Must remember to pack more black clothes for next trip).

The day before I was due to leave, the senior recipe tester had to travel to Brisbane for work.

His was a particularly early start, but no big drama. The junior recipe testers and I went about our usual Wednesday things, culminating in soccer training for two of them. Miraculously, training occurs for both juniors at the same park at a very similar time. And so, last Wednesday night, the four of us went.

About half way through training one of the juniors fell over. He did not get up. He howled. And could not readily be comforted. We sat about for a bit waiting for the comfort to kick in. It didn't much.

He was complaining bitterly of a very sore arm, and so in the end I thought perhaps I should seek some expert advice. A&E at the Children's Hospital seemed the most likely place to get the advice we needed.

With one howling junior on my hip I trudged back to the car. A good friend offered to take the other juniors home with her at the completion of training until we could work out what the position was. At the news that one junior was going to hospital another junior also began to howl. I comforted as best I could with my one free arm and my somewhat pretzeled spine, and continued on my journey.

The initiated will know that children's hospital A&E departments are not the place to go for a good time. I found myself inspecting every person to come through the door, wondering what we might catch from them. It is particularly incumbent upon any parent, I believe, to give a wide berth to anyone on "trial of fluids". For the uninitiated: you don't ever want to sit next to the poor soul holding the plastic bag.

Many hours passed. The crowds built and the caring, if frazzled, staff met need as they were able. Eventually we made it to X-ray, to the doctor's consult and ultimately into a cast to begin the process of healing a broken arm. As the hours passed I began to wonder whether I should reschedule my flight for the following morning: I wasn't sure I'd be home in time to make it.

With the senior recipe tester back on tera firma he fast tracked himself home from the airport to rescue our friend and bundle our other juniors into bed. He then arranged for someone else to mind them at our place and came to the hospital to relieve me. I had a bag to pack...

We all finally made it to bed three hours before my alarm went off to go to the airport. The junior is mending. The senior and I would like a bit more sleep...

I'm so grateful for the three days I got to spend dreaming and strategising Dinner on the Table. But there's no balance between caring for my children through crisis, and an intensive work period. I know you know this story. Because it's your story too.

Is it time to stop talking about balance, as if it's something to aspire to?

At that particular time, we had just enough resources to fit the demands, both thrust upon, and chosen by us. We were able to meet competing needs, with help from family and friends, and, while exhausting, our work during those few days was meaningful, if unpredictable.

Ultimately, we could sustain the pace for those few short days. But ask us to expend those resources for a week, or a month, or a year? We may as well plan to fly ourselves to the moon.

And so, forgetting balance: how sustainable is your daily life? How long can you manage the competing demands of your work and home life? Do you have the resources to fit the demands? How long will those resources last? How predictable is your day to day?

I know your life is not balanced.

But perhaps it doesn't have to be.

Why mums are worth it

My mum and I

Photograph: Alexander Mayes Photography

I met my mother quite a long time ago, when I was born. I don't remember it. Mind you, she assures me, neither does she. Best practice for childbirth in our case (and with the trouble I apparently caused) saw her knocked out entirely when I was born. She's not sure how many hours or days passed before she came to. ...But that's another story...

Thirty something years after that I became a mother.

And somewhere in between, I spent a lot of years thinking about mothers, understanding mothers and mothering from mothers themselves, wrestling with what it means to be a mother, to become a mother, and how this all happens in the context of disability.

In fact, I wrote a book about it.

Its publication was not proceeded by a great fanfare. Oprah didn't phone, wanting to discuss it. In fact, in the absence of any phone calls I rang the two people I thought might be excited about it: my mum and dad.

Dad answered the phone.

"My book is published."

"Well, that is just fantastic. Congratulations. We'll have to buy a copy. How much does it retail for?"

I told him.

[Long pause]. "Can I borrow your copy?"

Best seller or not, I learned some things about mums who have a disability. I think I learned a bunch of things about mums generally. As mothers, we see ourselves as the centre of our child's support network. We fundamentally believe that no one can provide care for our children as well as we can.

That's why (at times!) it can be so hard to leave your children with someone else. It's why we get defensive when other people suggest ways we could do a better job of caring for our own kids.

At the extremes: if we, or someone else, decide we can no longer look after our children at all, where does that leave us? The work I published after this book attempted to answer that question: it leaves mums grief stricken. But not always in disagreement: sometimes there are reasons why mums can't look after their own children. But when a mum is told she can't be the centre of her child's support network, it hurts.

Being mum is a job trickier and more rewarding than we ever thought possible. And we, like you, think mums deserve looking after. Mums are worth it.

If you'd like a good read (and you have a very good job), you can purchase a copy of the book here.

Or, you can borrow mine.

Cinderella had the same trouble...

The senior recipe tester and I at the ball

Once upon a time in a land not far from here at all, there lived a maiden not as young as she liked to think. In fact, she was less maiden and more matron... but that's the start of another story.

She did not spend hours sweeping out chimneys and emptying the ashes. In fact, rather than having to while away the hours yearning for a ticket, she was invited to the ball. Prince Charming had turned up many years before, had assumed the role of Senior Recipe Tester and added Junior Recipe Testers to the tribe as well.

But, given that the prince was still cute as ever, she decided to take him along.

It was a friend, rather than a fairy godmother, who loaned her a gown to wear. As for shoes, they looked like they did indeed belong to poor Cinderella (before the fairy godmother showed up). Some of the straps were rather flapping in the breeze and required repair. The local cobbler made assurances that he could sort this out in plenty of time for the event.

Her locks, were not particularly Cinderella-esque: being neither blonde nor curly. Again, in the absence of a nearby fairy godmother, she went to see the hairdresser, to have her tresses tamed.

On the way home from the hairdresser, there was just enough time to call in to the cobbler to retrieve the golden (rather than glass) slippers she was to wear that evening. Congratulating herself on a) finding a handy parking spot and b) her speed and agility getting through the crowded shopping centre, without ruining her hair, Cinderella raced back to her chariot.  (the one with the car seat in the back seat).

The golden slippers were something to behold, once mended. She thanked the cobbler kindly, knowing they would suit the gown perfectly, and raced back to the chariot in the handy parking spot.

On the turn of the key, the chariot made a peculiar noise. Cinderella tried again. It made less noise. On the third try the chariot was completely silent.

In the land far away, it is hard to say how a pumpkin chariot would be remediated if the horses refused to pull it. In the land of quite near here, the NRMA battery service appeared to be the best option. She also phoned Prince Charming.

Because he really is, Prince Charming offered to come and wait with the chariot so that Cinderella could go home for a pre-ball snooze. For this she was exceedingly grateful, even if it did mean she had to sleep on her face for fear of ruining her recently combed tresses.

Many hours passed. Eventually Prince Charming appeared, now somewhat thin on patience. He arrived not on a steed, but in the chariot. The one with the car seat in the back and the new battery in the front. 

In record time, they made it to the ball.

I'm sure Cinderella was dropped at the door of the ball, the footmen rushing to assist her from her carriage. My Prince Charming found a parking spot and we made our way to the function. It was a lovely evening.

The walk from the car was just far enough for the recently mended slipper to become completely detached from itself and disintegrate entirely. And so, like Cinderella, I left the ball with only one shoe.

The edges of love

Timber hearts

Love is a wonderful thing. The commitment of one human being to the wellbeing of another is surely to be cherished and encouraged. But you wouldn't want to take that sort of support for granted. Neither would you want to push that commitment too far. 

I perhaps might have.

Last weekend Dinner on the Table attended the Castle Hill UPmarket. Bright sunshine, friendly folk, good food and lovely, local gifts. Perfect. Especially for the occasion, we had a new setup, complete with a freezer from which market goers could purchase their dinner. Excellent.

The freezer lives in our big kitchen. I needed it at the market. We borrowed a trailer for the transportation efforts and all appeared to be well. At some point it did dawn on me that, even with my herculean strength, I was perhaps going to struggle to lift a commercial freezer into a trailer on my own.

I turned to the person I turn to most often on these occasions. The senior recipe tester, who not only possesses herculean strength, but titanic patience, agreed to help.

Because the market started early we had to dig the junior recipe testers out of bed on Sunday morning for the trip to the kitchen. Bleary-eyed and pyjama-clad they trudged to the car while I trilled merrily that it would not be long before Daddy could take them back home for breakfast.

Turns out it was very long.

Arriving at the kitchen we set about simply popping the freezer into the trailer and setting off. The trailer was not so far up off the road and we had a trolley. No problem.

We manoeuvred the freezer against the trailer tailgate and the senior climbed in. We reasoned we could tilt it back and simply heave it into the trailer. I pushed on the bottom, while the senior pulled from the top.

I thought we were making excellent progress. We were inches from having it aboard. I pushed some more until I heard an odd noise. I shouted instructions. No response. When I looked around the side of the load I realised the senior was wedged between the top of the freezer and the trailer cage. His face was red. He was unable to speak freely. He did not look best pleased.

I stopped pushing. We put the freezer back down on the road. We tried something else. And something else. The freezer remained resolutely out of the trailer. A couple of times a junior would emerge from the car to ask if we'd got the freezer on the trailer yet. By this time neither the senior nor I looked best pleased.

I'm always learning. Last weekend I learned how tricky it can be to get a large, cumbersome object to defy gravity, even if it only seems like a little bit. This week I will learn about lifting devices specifically designed for moving large objects off the ground.

And I have learned that love, the commitment of one human being to the wellbeing of another, might find its limits pinned under a large object and strained through a trailer cage.

The one that doesn't smell faintly of dinners.

Pale green handbag sitting amongst Autumn leavesWhen the situation calls for it, I like to think I am capable of holding my own in a professional forum. You know the type. The suited up kind. Brushed hair. High heels. That sort of thing.

And recently, the situation called for it. I dressed up. I dug out the fancy handbag, you know, the one that doesn't ever go into the kitchen. The one that doesn't smell faintly of your dinners.

On that morning, the senior recipe tester took our junior recipe testers to school because I had very important places to be. I kissed them all and left early for the bus stop. The commuter bus stop. To catch the bus. The bus that takes commuters into town. To do important things.

Important work is fuelled by coffee, so I filled my travel mug and put said cup in my handbag. I fancied that perhaps the junior recipe testers were vaguely impressed that I was heading out early to do important things...

As I walked out to the garage, I realised I had to drop a box off at the kitchen. The kitchen is near the bus stop, so I figured I could do both in the one trip. Tucking my handbag firmly under my arm, I leaned over to pick up the box.

Coffee poured into my armpit. 

It dribbled onto the box.

I resisted the urge to start yelling, but I did have to flap my shirt in an effort to rapidly cool the coffee down.

I walked back into the house.

"That was quick," commented the senior recipe tester. Now, it should be said that the senior is well used to my leaving several times in the morning, returning often more than once to retrieve the things I have forgotten on the first, second or third attempt at leaving.

On this particular occasion I may have given him a somewhat withering look. "I have coffee in my armpit," I quipped, trying to engender sympathy. "You wouldn't believe what just happened..."

"If it was anyone else, I probably wouldn't" was his truthful reply. He didn't bat an eyelid when I handed him my handbag and asked if he would please wipe it out while I went to change my clothes.

I did eventually get to my meeting. In town. With me, I had a handbag. The fancy one. That doesn't smell faintly of your dinners.

Yes. The one that smells strongly of coffee...

Therapeutic Gardens guest blog

Dinner on the Table team

It was my pleasure to write this week for the Therapeutics Garden blog, about what drives me and about our affiliation.

I first met Jo from Therapeutic Gardens a couple of years ago.  What inspired me about her was her intimate understanding and her passion for the power of gardens, of the natural environment, to promote health and well-being for people of all ages, abilities and needs.  Almost immediately we started talking about how we could work together to improve the health and well-being of some of Australia’s most vulnerable.

Dinner on the Table has always worked on the premise that having a good dinner cooked for you changes your daily life.  But how that dinner is produced changes lives too.

Read on to find out how we plan to work together.