We are not stakeholders

Our children are not numbers on a spreadsheet

There is a feeling you get when you’re in emergency and your child is ripped from your arms - it’s as if you’re wrenched in two and while you stand, another part of you chases the doctor or nurse or paramedic down the hall.

You never quite feel whole again. Even when you’re back with your child. There’s a part of you now that knows that this place is also where you live now. You will always rely on this system and these people, to help your child stay alive.

Sometimes it’s not quite so dramatic, so heartbreaking and distressing. Sometimes, you find out you will rely on this system and these people while you’re in a small room with posters about immunisation and the dangers of smoking.

Either way, something within you changes. You are still a parent and for that you’ll be grateful till the end of time, but you now also require support, from this system and these people.

This will mean that you will need to tell your family’s story over and over again. No matter how painful, no matter how the pins and needles begin at your feet and are at your neck by the time you get to “he was then diagnosed with…”.

You will meet people in the system who make you feel as if you’re worthless, but worse than that, that your child is worthless - that you’re a drain on the system.

And you will meet people in the system who are so kind that it physically hurts you. Your heart beats harder, pushing against your rib cage, a voice under your own whispering “there must be a catch”. But there isn’t a catch, they just remember something that so many have forgotten in the system:

You’re a mum, not a stakeholder.

Photo by Ante Samarzija

This government wants to view our families as businesses. In doing so, they constantly remind me that my family is a failing business. Our costs are higher than our limited value to them.

I can say “No, no you don’t understand, he’s priceless - look!”. And they can say - “Crown expenditure on Disability Support Services, adjusted for inflation, has roughly doubled since 2005-06. You’re part of an appropriation of $2.3 billion”.

This is your fault they say. Did you claim parking on the ward? Did you use the National Travel Assistance Scheme to get your child to their chemo appointment in the city two hours from your town? It is set at 28c per kilometre and $100 per night for accommodation. To put that into context, the current 2022 IRD mileage rate is 83c per kilometre. Did you take the one nappy a day allocated to you for your child? Did you spend more than 15 minutes with the specialist? The blood test you have to get every month - you know the one where you hold your child down as they beg you to stop? Did you do that? Because it costs the government money every time you do. The physio who is trying to help your child walk…You got that free you know? Free.

You’re a stakeholder now, they say.

You’re a drain on the system. You’re not a parent, you’re a carer who uses the thousands of dollars you get for your child to booze it up and smoke cigarettes and buy Lotto tickets while getting your hair and nails done.

You’re a stakeholder and your family is a business to this government. You’re not profitable. You’re worthless. And worse than that you cost money. You and your family.

You cost so much money - the Child Disability Allowance gives you $52.79 a week. You can get a Child Disability Allowance only if your child has been assessed as needing constant care and attention for at least 12 months because of a serious disability.

And still, even with all of that $52.79 a week support, you continue to not earn enough.

Disabled children are more likely than non-disabled children to be in low income households. One in five disabled children in our country live in “material hardship”. That’s 20%. This is more than double the rate of non-disabled children who live in “material hardship” 10%.

Māori, Pasifika whānau with disabled tamariki are more than twice as likely to be experiencing poverty compared to Pākehā families.

Welcome to the system.

Photo by Josh Appel

But don’t worry. There will be a review of you, your children, your family. You’ll be included under ‘stakeholder relations’.

The economic value of carers’ unpaid work is estimated at $17.6 billion a year or 5.4% of GDP. But make sure you’re grateful. Aren’t you grateful? For getting so much for free?

Make sure you say the right things. You’re lucky that you get anything for free.

The State of Caring Report, found carers have higher rates of anxiety, loneliness, and poor physical health than the general population, with 70 per cent suffering from depression – largely due to financial stress. Half of carers report having had to give up paid work due to family caring commitments.

The report also found many carers struggle to know what support is available and how to access it, with only 32 per cent managing to access respite breaks a few times a year.

Make sure when you’re ‘consulted’ as a ‘stakeholder’ you recognise that as a carer, you are not contributing anything.

Without unpaid carers, the already overburdened health system would not be able to cope with the extra demand for its services of course. There are 7.9 unpaid carers for every practising nurse, and 9.6 unpaid carers for every personal care assistant or aged and disability sector carer. But, do you know how much you all cost the government?

The annual economic contribution of caring is $17.6 billion - 5.4% of GDP. Two thirds of lost income is lost by women carers. There are 432,000 unpaid carers in Aotearoa.

But listen, for approximately 100,000 people, the government has been administering an annual appropriation of $2.3 billion. For all disabled people and all of their carers. That’s too much. Just for these stakeholders.

Your child is everything to you. You are everything to your child.

You are not a stakeholder.

Even if this government wants you to be.

I am not a stakeholder. Even if they want me to be one.

My beautiful tamariki are not numbers on a spreadsheet. They are kind and gentle and hilarious and loving and intelligent and vibrant and they have contributed more to this world than any one person in this government already. Even if they weren’t all of those things, they deserve life.

I am not a stakeholder. I’m a mum.

There was a time I thought I would lose my baby - I sent prayers to every God, I begged, I pleaded. I understood that there’s nobody you can bargain with, no compromises can be made.

Others have stood in the same hospital halls as I have and begged and screamed for their child’s life. Their child was just as loved, as wanted, as mine.

You can strip us of our support, of our respite - you can attack us in the media, say we’re worthless, that we’re taking from taxpayers, you can (and you do) lie and lie and lie about us.

But you cannot take away the names our children use for us.

We are mothers, fathers, papas, mamas, nanas, poppas, grannies, grandpas, aunties, uncles….We are not stakeholders.