I am tired of consultation
It is exhausting and for what?
The last few years I have participated in several rounds of advisory groups, consultations, and submitted on various bills. Across each of these I do my best to bring the voices and experiences of parents of a child with a known/accepted disability1 to decision makers, MPs, public servants, councillors, Ministers, etc.
I am not the only one; organisations like Disabled People’s Assembly bring the voices of disabled people and families to policy makers and MPs, as do a wide variety of NGO’s and charities. Autism NZ has seen some success; Rare Disorders NZ has been working hard to secure exemptions from attendance prosecution for medically fragile school children. For several decades now, disabled people and families have been tirelessly and endlessly doing this work across a range of sectors.
And yet.
Progress is glacial. Understanding remains limited. I find I am repeating myself. I am in meetings where I recognise other names and faces, I hear us saying the same things, repeating our experiences, sharing stories I’ve heard before. The only change is the poor hardworking public servant on the receiving end. Sometimes I cut and paste from previous submissions as nothing has changed in the meantime.
It is demoralising and tiring.
This week I attended a consultation meeting with the Disability System Services (DSS) Taskforce. The public servants were lovely, genuinely interested, and clearly wanting to do their job well. I cannot fault them in this regard; they are doing their best.
And yet.
I ended the meeting and cried.
It was so harrowing, sharing my deeply personal story. It is brutal, laying oneself bare for others to pick away at in order to gain understanding. Dragging one’s pain and hardship out for others to examine is hard. It is deeply emotional work, this allowing of strangers to delve into our personal complexities and nuances in order to better understand disability funding and service provision. The others present also shared their stories, and together we shared our collective frustration and exhaustion, our worries and fears, and our hope for the possibilities of what could be. We felt heard, respected, and valued.
And yet.
It was exhausting and demoralising. The Taskforce was clearly unacquainted with the lived experiences of disabled people and families. They struggled to understand the complexities we live with daily. Their knowledge of Enabling Good Lives as a funding and disability support model was woefully inadequate.
All that work by so many different people, spanning decades.
And here we are, starting again.
Here we are, explaining the basics, getting yet another team up to speed, sharing our personal lives out for strangers to poke at and ask questions about. It takes an emotional and physical toll, this work.
I am tired of consultation.
To add insult to injury, this week I heard on the disability grapevine that every single NASC and EGL site up and down the country is over budget; so much so that every single one has been ordered to make sweeping cuts across the board to the budgets of disabled people and families.
What a farce of a consultation, to ask with one hand while taking away support with the other.
The cruelty of this current government is, as always, quite breathtaking. I have started to wonder when I will run out of breath at this rate.
In case we forgot, this government gave away the following:
$2.9 BILLION DOLLARS for landlords to get a tax break - but parents of a disabled child will not get funding for the respite care they need.
$216 MILLION DOLLARS for heated tobacco products - but disabled people cannot access the support needed to live an independent, ordinary life.
$14 BILLION DOLLARS for tax cuts - but disabled children cannot access the therapies, services and supports they desperately need.
I think I’ll have my breath a while yet, if only to shout this cruelty from the rooftops.
I am using this term as there are disabilities that this government has yet to acknowledge (e.g., Fetal Alcohol Syndrome Disorder). This lack of recognition creates an additional layer of difficulty in being heard.
I am going to share this tonight. Everyone is afraid to use the A word, Austerity. That is what we have. That means the rich get richer and the poor/vulnerable suffer.
Thank you for sharing. Powerful words. 😔
I'm still processing Jonathan Mosen's recent RNZ interview, pondering how I will respond to, honour his words.
I share a few key quotes from that interview for those who missed it.
Kia kaha 🙏
"....I try and keep a gratitude journal. And as an advocate I wouldn't have survived if I didn't keep a gratitude journal because advocacy is kind of like banging your head against a brick wall. every so often the wall moves just a fraction and you're got to take the wins, so I try and keep a balance.
.......There are a lot of things that need to change [in the disabilities sector] and we can talk about the agencies and the crisis that I beleive that they face, but if we want to start making change, we've got to have disabled people in public facing roles so that those attitudes can shift, and that will help to shape public policy for service delivery and also ither accessibility related things that affect disabled people.
.........We have no members of Parliament who identify as active members of the disabilities community.
There has never been a minister for disability services who is disabled themselves.
And in 2024 it wouldn't be acceptable for a moment for there to be say a male minister for womens affairs or a pakeha minister for Māori development.
.........But we have a culture in this country that disabled people will be the people that things are done for, and frankly I'm just tired, I'm fed-up with disabled people only being visitors to Parliament.
How is it that a house of representatives doesn’t represent a group that comprises a quarter of the country's population - disabled people.
It is an enditement on all political parties that that is the case.
..........How can you go out there credibly and say employ blind people when they don't even do that themselves in those senior leadership positions.
........There has not been a blind what we would now call a Chief Executive of the blindness organisation in this country since 1923 - over one hundred years of no blind person leading that organisation.
.........And it starts with leaders, who can't just shut their laptop down and forget about blindness or walk away from blindness....
But to be fair this doesn't just apply to blind low vision nz, and the blindness sector, we have very few disabled people in leadership roles.
In my 5 years at Work Bridge, I was really the only disabled person leading a larger provider of disability support servixes, and I just don't understand why people think that's okay, particularly when you look at say the number of Māori doing geeat work in Māori development roles right accross their sector, we don't have the same thing here.
New Zealand is a signatory to the Conventional of Rights of People With Disabilities.
What we need, and the Royal Commission on Abuse in Care said this, is legislation that codifies into law our rights under that convention.
So it's more than just accessibility, it's about human rights.
If you get discriminated againts because you are disabled when you're applying for a job or anywhere else in society, that's not necessarily an accessibility issue, but it is a civil rights violation. And we do have a human-rights act here, but it's very weak and it's very focused on mediation and lets get everybody around the table and try and sing kumbyah if we can - it doesn't have teeth.
......The Labour government absolutely shafted disabled people, by instead of introducing a bill that gave enforceable accessibility standards, it just put a piece of legislation on the table that said - oh we'll form a committee to discuss disabled people.
And that right there is an example of how successive governments from both political persuasions treat disabled people. That was a contemptuous thing for the previous Labour Government to have done....."
Jonathan Mosen
https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018964971/blind-and-disabled-advocate-jonathan-mosen-to-quit-nz-in-frustration