I know it shouldn't, but it still amazes me how many people think government (Central or Local) can be run like a business... That's not how society works.
This is everything. And timely. In a day when I jumped in the car and drove from Rotorua to Wellington to help my 20 yo child, because it’s so hard to find help and be helped when you are at the end of your string and nobody follows up on their diagnosis and they have to advocate for themselves and they tell you it’s so hard they want to die. Fuck all these assholes who have never felt the love and wonder and adventure and laughter that sounds like bells from their child like I have felt for mine. I told the nurse today, who rung me in a panic because my kid wasn’t answering her call “I will always advocate and support and bang on doors for my children, even if they are (considered) adults.” Thanks again Emily ♥️♥️♥️
All the decades parents and family were refused recognition as carers and were denied payment as carers and now you're a stakeholder..this gives me chills.
One of the worst things our modern societies have done is to corrupt what the word “stakeholder” means.
A stakeholder is literally an independent party who holds the stakes of those betting/contesting an outcome. Being independent they can be neutral in assessing who gets what.
So it’s a misnomer to tell you that you are a stakeholders in this sense. You don’t have hold any independence or neutrality. You are involved. You have (or should have) agency. You have rights. And as such have more important views than an independent neutral. So your views are way more important than this concept of a “stakeholder”.
And that needs to be recognised and to be highly valuedin assessing and evaluating opinions. Especially by governments weighting what’s important.
Kia kaha fierce & loving mother, brilliant writer, amazing advocate 🫂 You have the love, the lived experience, and the way with words to share with those of us who don't the truth - you go girl👏
I said once this 3-headed snake started rolling back health & support policies & introducing harmful policies in support of their $$$ mates, that I was standing by to march in the streets. I guess we have to wait & see what is in the budget, or should we get cracking now in case it's not too late to influence things?
Let us know what you want of those of us who want to support you & all carers in your advocacy - petitions, letter writing, protest marches ????
Heard that the National Party-aligned manager of one of a provincial Work and Income offices has started turning down applications for the Child Disability Allowance even when all the paperwork is signed and in order. She apparently told a mother recently that her child didn't look disabled.
Flashbacks to the 1990s when me, profoundly deaf, tried to apply for disability support and was told I was lying to them because I was independent enough to not need an interpreter. Like, I have my pen and notebook. I can get by!
The worst, most uncaring government we have ever had!
Brilliant Em. Being a statistic isn't easy when the statistician suffers from economic myopia.
I know it shouldn't, but it still amazes me how many people think government (Central or Local) can be run like a business... That's not how society works.
And it doesn’t even work that well in most businesses
No, you're not. I stand with you. 💗
This is everything. And timely. In a day when I jumped in the car and drove from Rotorua to Wellington to help my 20 yo child, because it’s so hard to find help and be helped when you are at the end of your string and nobody follows up on their diagnosis and they have to advocate for themselves and they tell you it’s so hard they want to die. Fuck all these assholes who have never felt the love and wonder and adventure and laughter that sounds like bells from their child like I have felt for mine. I told the nurse today, who rung me in a panic because my kid wasn’t answering her call “I will always advocate and support and bang on doors for my children, even if they are (considered) adults.” Thanks again Emily ♥️♥️♥️
All the decades parents and family were refused recognition as carers and were denied payment as carers and now you're a stakeholder..this gives me chills.
I love your writing Emily. You alway put feelings into words so well. And you often make me cry💕 Kia Kaha
Said with such grace while tearing at the heart. Motivated to seek out any respite services for careers and find a way to help.
One of the worst things our modern societies have done is to corrupt what the word “stakeholder” means.
A stakeholder is literally an independent party who holds the stakes of those betting/contesting an outcome. Being independent they can be neutral in assessing who gets what.
So it’s a misnomer to tell you that you are a stakeholders in this sense. You don’t have hold any independence or neutrality. You are involved. You have (or should have) agency. You have rights. And as such have more important views than an independent neutral. So your views are way more important than this concept of a “stakeholder”.
And that needs to be recognised and to be highly valuedin assessing and evaluating opinions. Especially by governments weighting what’s important.
Thank you for sharing your experience so bluntly.
We are people, people who love, suffer, care, share. This is a passionate and moving account of what it means to be a person who cares. Thanks Emily.
Kia kaha fierce & loving mother, brilliant writer, amazing advocate 🫂 You have the love, the lived experience, and the way with words to share with those of us who don't the truth - you go girl👏
I said once this 3-headed snake started rolling back health & support policies & introducing harmful policies in support of their $$$ mates, that I was standing by to march in the streets. I guess we have to wait & see what is in the budget, or should we get cracking now in case it's not too late to influence things?
Let us know what you want of those of us who want to support you & all carers in your advocacy - petitions, letter writing, protest marches ????
March on!
💗 💗 💗
Heard that the National Party-aligned manager of one of a provincial Work and Income offices has started turning down applications for the Child Disability Allowance even when all the paperwork is signed and in order. She apparently told a mother recently that her child didn't look disabled.
Flashbacks to the 1990s when me, profoundly deaf, tried to apply for disability support and was told I was lying to them because I was independent enough to not need an interpreter. Like, I have my pen and notebook. I can get by!
🙋🏾♀️🫂
Powerful, heartbreaking and beautiful words Emily.
Thank you.