This blog is based on a brief I was asked to provide.
NZ’s cochlear implant program (CIP) needs a reset. CIP is great, but not if 1/3 of kids become Persistent Language Delayed (PLD). In the past the program has been about hearing, but the science shows it must be about language first. (Clinical Pediatrics 2016, Vol. 55(6) 513–517, pdf)
ENT surgeons I meet and lobby and the CI industry are coming to accept the science. Speech therapist Kimberly Sanzo is a great example, but there remains an unwillingness in some to rethink the emerging science. In the Deaf community it has historically also been a very sensitive and divisive issue.
Deaf babies need natural language, not hearing per se. Families like Oliver and Bridget Ferguson’s and Leah Coleman‘s mum decided to give their babies language first and think about hearing later. This is because it’s really hard for babies and kids to do spoken language speech therapy which is essential to their CI program. It doesn’t come naturally to them, whereas they pick up sign language like little sponges when exposed to it.
When I retired from Australian Government Service in 1995 my security classification was Top Secret. I also had access to information that was Australian Eyes Only (AUSTEO). I had access to much information that is now part of the 5 Eyes network. While I worked in Bob Hawke’s Department of the Prime Minister and Cabinet I had access to Cabinet documents and information across all sectors of government. People would return my calls.
I am not as brave as Edward Snowden so will not be making further comment apart from this statement. So please don’t contact me. I’m busy with Deaf issues.
My field was China so after retirement I set up a consultancy which took me there back and forth.
While in Beijing soon after my retirement I was approached by an Australian who is still alive. Due to Australian defamation law I will not name that person, their role or where in Beijing the meeting took place yet.
This person said they were approaching me on behalf of Bob Hawke’s company which had contracts with the Chinese arms manufacturer Norinco. They wanted me to become involved and to translate weapons documents for them. I declined.
I was surprised by the approach of this person whose role I would not expect to include links to Bob Hawke’s company. But they had access to information which convinced me they were a legitimate representative from Hawke. I was not surprised by the request per se given my prior knowledge of Hawke.
When the Ben-Menashe allegations surfaced in 2001 I was also not surprised by Queensland journalist Marshall Wilson’s Submission to the Electoral Funding and Disclosure Inquiry of 11 July 2001. (PDF)
The response by the establishment to this statement may be to attempt to undermine my reputation. More likely is that this statement will pass relatively unnoticed to become a footnote in the history of weapons trade. Nonetheless I will add that while I was a bureaucrat I gave frank and fearless advice which often consisted in pointing out the hypocrisy of the government.
This was particularly so in the aid game (my advice on Papua New Guinea springs to mind) where the rhetoric of helping poor nations was only matched by the vigour of directing aid money back into the pockets of Australian suppliers. Gareth Evans got particularly shitty with me on one occasion where I had the temerity to point this out. Fortunately we were travelling together in a lift and there was no ashtray to hand.
Australian behaviour at the World Bank and other multilateral organisations was also orchestrated to prop up the interests of Australian capital – the stupidity being of course being that capital rarely has a national interest and will move to the jurisdiction which maximizes its profit. Media policy which gave Rupert Murdoch what he wanted is a great case in point. I argued strongly within the bureaucracy for a different policy approach. This was not appreciated by those who were happy with the status quo.
I could go on and on and maybe one day I will. BTW guys, as I have been trained to do, supporting documentation is stored offsite.
On 26 June 2019 these 50 Members of Parliament voted to stop further debate on the End of Life Choice Bill. Email them your views. I’ll tell you what I think below (hint: it’s not pretty).
Kiritapu Allan Kiritapu.Allan@parliament.govt.nz Kanwaljit Singh Bakshi firstname.lastname@example.org Maggie Barry Maggie.Barry@parliament.govt.nz Andrew Bayly Andrew.Bayly@parliament.govt.nz David Bennett David.Bennett@parliament.govt.nz Dan Bidois Daniel.Bidois@parliament.govt.nz Simon Bridges Simon.Bridges@parliament.govt.nz Simeon Brown Simeon.Brown@parliament.govt.nz Gerry Brownlee Gerry.Brownlee@parliament.govt.nz David Carter David.Carter@parliament.govt.nz David Clark email@example.com Jacqui Dean Jacqui.Dean@parliament.govt.nz Sarah Dowie Sarah.Dowie@parliament.govt.nz Paulo Garcia Paulo.Garcia@parliament.govt.nz Paul Goldsmith Paul.Goldsmith@parliament.govt.nz Nathan Guy Nathan.Guy@parliament.govt.nz Joanne Hayes Joanne.Hayes@parliament.govt.nz Harete Hipango Harete.Hipango@parliament.govt.nz Anahila Kanongata’a-Suisuiki Anahila@parliament.govt.nz Denise Lee Denise.Lee@parliament.govt.nz Melissa Lee Melissa.Lee@parliament.govt.nz Agnes Loheni firstname.lastname@example.org Tim Macindoe Tim.Macindoe@parliament.govt.nz Todd McClay Todd.McClay@parliament.govt.nz Ian McKelvie Ian.Mckelvie@parliament.govt.nz Todd Muller Todd.Muller@parliament.govt.nz Alfred Ngaro Alfred.Ngaro@parliament.govt.nz Damien O’Connor Damien.O’Connor@parliament.govt.nz Simon O’Connor email@example.com Parmjeet Parmar Parmjeet.Parmar@parliament.govt.nz Chris Penk firstname.lastname@example.org Maureen Pugh email@example.com Shane Reti Shane.Reti@parliament.govt.nz Adrian Rurawhe Adrian.firstname.lastname@example.org Deborah Russell email@example.com Jenny Salesa Jenny.Salesa@parliament.govt.nz Alastair Scott lastair.Scott@parliament.govt.nz Su’a William Sio Aupito.firstname.lastname@example.org Nick Smith nick.Smith@parliament.govt.nz Jamie Strange email@example.com Rino Tirikatene firstname.lastname@example.org Anne Tolley Anne.Tolley@parliament.govt.nz Phil Twyford email@example.com Louise Upston Louise.Upston@parliament.govt.nz Nicky Wagner Nicky.Wagner@parliament.govt.nz Hamish Walker Hamish.Walker@parliament.govt.nz Meka Whaitiri firstname.lastname@example.org Michael Wood Michael.Wood@parliament.govt.nz Michael Woodhouse Michael.Woodhouse@parliament.govt.nz Jonathan Young Jonathan.Young@parliament.govt.nz
So, call it what you will: Euthanasia, Physician Assisted Dying (PAD), End of Life Choice, Assisted Suicide, assisted death. I don’t really mind, but what I strongly object to is the lies, hypocrisy and intellectual dishonesty shown among these 50 MPs.
The huge majority of these MPs have strong religious beliefs that they seek to impose on the rest of society. Many of them fail to disclose that belief during debates.
Others use the intellectually dishonest excuse that disabled people might feel pressure to agree to end their lives. This is a weak argument for three reasons:
it’s not only disabled people who might feel such pressure
denying everyone a choice because of possible future abuse is wrong (two wrongs don’t make a right). It’s like saying a shop shouldn’t sell knives in case a murderer wants to buy a knife.
I have yet to see those disabled people, including from the Deaf community, who oppose the Bill (Huhana Hickey, Chris Ford, Raymond Mok, Kylee Black, Rachel Noble) address these three points. I am happy to amend this blog if they do so. [Note 29 June 2019 I’ve been attacked publicly by Giovanni Tiso who implied that I think Paula Tesoriero, the Disability Rights Commissioner, is a religious extremist. This is a ridiculous attack. I support Paula’s submission where she says the Bill needs further work. The point is that the extremists deliberately prevented this work from happening and then said the Bill was no good. LOL.]
Another specious argument is that there has not been enough public consultation. This is absolute rubbish also. The Bill has been in committe stage for 16 months and thousands of submissions have been made. Incidentally most submissions are from the extreme right wing religionists who organised a very dishonest campaign and then claimed a majority of New Zealanders supported them. This was despite public polls showing how dishonest that claim was.
Further, Maggie Barry and her backers deliberately derailed the committee process. They voted to prevent the committee from doing its job ie go through the Bill line by line and change it where needed. Instead Barry and her mates misrepresented the views of almost every sector of society. They found a few doctors who agreed with them and then they implied ALL doctors agreed with them. Barry and others like Nick Smith actually did this in Parliament which you can read in the link above. This is tantamount to lying in Parliament and therefore lying to the people of NZ.
Next we have the issue of youth suicide. Many who oppose the Bill say it will “send a message” that youth suicide is OK or that “suicide contagion” will result. What tosh. What absolute rubbish. I find it particularly disgusting that the extreme right religionists would conflate the issues to serve their ridiculous ideology. The select committee report in the last Parliament said “The Ministry of Health told us there does not appear to be any connection between assisted dying or euthanasia and rates of suicide.”
Another lie spread by the opposers is that palliative care is not good enough in NZ and better palliative care would mean no need for euthanasia. This lie is also disgusting. I, like many others, have sat with dying people who have had the best palliative care possible. The choice is simple: live your last days dosed to the eyeballs in morphine unable to tell if you are still alive or dead or choose a dignified death. Sure the pain can be “managed” in most cases if you want to be a vegetable who feels no pain but wakes up occasionally to beg to die.
The extreme conservative Nick Smith is particularly dishonest on this issue. He claimed, in Parliament, that palliative care doctors and nurses “were adamant and consistent in their opposition to this bill.” Perhaps he didn’t hear the submissions reported by another MP “Some were in favour of the bill; some were not—some were vehemently not.” That he cannot be aware that some palliative care doctors and nurses do not share his extremist views beggars belief.
In fact in the case of Lecretia Seales, her husband Matt Vickers reports research showing “palliative care had no effect on the physicians’ decisions to act with intent to hasten death.” And in the legal case Lecretia took both sides agreed, as reported to Parliament, “that no matter how good palliative care can and should be, there are some people for whom it just cannot end all suffering.”
Here is a list of 23 MPs who also voted against abortion law reform in Aug 2019. Every single one of the 23 is also among the 50 above.
“If I say yes to another person’s language, I have said yes to the person. If I say no to their language I have said no to the person.“
So can someone please tell me why the colonial masters are so hypocritical?
Why do hearing people set up the world so that Deaf people MUST have teacher qualifications before they can look after Deaf preschool kids? But then when hearing people are looking after Deaf kids it’s OK for them only to have a “willingness to learn” Sign Language.
Yeah, I have a “willingness” to learn every language on the planet. But I shouldn’t get a job with Deaf kids, or as an Advisor on Deaf Children, or as head of a Deaf organisation until my Sign Language is as good as a native signer. And then I should only get the job if no Deaf people are suitable and I have agreed to job transition “Succession Planning” ie A SIGN LANGUAGE AND WRITTEN agreement for how and WHEN a hearie will hand over their job to a Deafie.
This hypocrisy must change. It must be called out.
The rule should become part of the culture in urban driving in order to improve traffic flow.
It would allow us to slow down when we want to give space for other vehicles to turn in front of us or merge into the traffic. Sure we lose a second but we regain it when the next person lets us in. The whole traffic network would flow more smoothly and benefit everyone.
[image description: 6 postage stamps with simple diagrams highlighting accessibility for disabled people. They include a wheelchair symbol, Braille for United Nations, two hands joined in love]
Open Letter to NZ Minister for Education, Chris Hipkins
Emailed 26 February 2019
Subject Heading: NZ Breach of UN Convention in relation to Deaf children
I draw your attention to the standard advertisement your Department runs for Adviser on Deaf Children (AODC) jobs. You will note that the very last qualification listed is in relation to NZSL and even this is not required. Thus it is hearing people advising parents of Deaf children about Deafness. Deaf people are not deeply involved and your First Signs program is yet to be properly evaluated as far as I can see.
The science now is very clear that Deaf children need Sign Language first (see research by Tom Humphries, Mairead MacSweeney and others). NZ pays lip service to the notion of bilingualism in Deaf education but this means in practice that NZSL is more often an afterthought.
Thus, an estimated one third of healthy Deaf babies in NZ (by which I mean not Deaf-Plus babies), despite being on a Cochlear Implant Program (CIP) will become Persistent Language Delay (PLD) people. The CIP fails for a variety of reasons. This means they will have no functional language for the rest of their lives. I have PLD friends and I know how hard their lives are even within the Deaf community. I urge you to obtain the statistics that show one third of children will become PLD. The statistics for NZ are held by Neil Heslop the General Manager of the NZ Southern Cochlear Implant Program (SCIP) who confirmed the estimate to me in a recent conversation.
Neil and the cochlear implant industry may be reluctant to have these figures become public, but the failure by your government to address the PLD problem for Deaf children is a breach of the UN Convention on the Rights of Persons with Disabilities (CRPD/UNCRPD). Article 24 of the CRPD in relation to the right of a child to education says “In order to help ensure the realization of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education”
The AODC job ad run by your Department also touts “Informed Choice” for parents in deciding on language options for their Deaf child. Unfortunately, 90 percent of Deaf babies are born to hearing parents who are often in grief at having a Deaf baby. These parents have usually never met a Deaf person in their lives. “Informed Choice” delivered by a hearing AODC to grieving parents results in an almost universal rush for early implantation of children with a Cochlear Implant. Please be clear, I am totally in support of this amazing technology, but again, the science is clear that it is of fundamental importance for a Deaf child to have Sign Language firmly established BEFORE a cochlear implant. The case of Leah Coleman in the USA proves this.
I appreciate that you may be given varying scientific advice on the points I have raised, but I would regard scientists seeking to refute these points as I would regard scientists who used to deny global warming was human driven. I urge you, if you are in doubt on the science, to liaise with the Prime Minister Jacinda Ardern in order to get a report from Professor Juliet Gerrard, her Chief Science Advisor.
The solution is simple. NZ should adopt a legislative framework similar to the SB-210 framework in California where if Deaf children do not meet educational milestones then appropriate intervention on behalf of the child becomes mandatory, just as we have mandatory education for all children in NZ.
If you feel it would help NZ to honour its CRPD obligations to set up a working group to achieve such legislation I know plenty of Deaf people who would love to be involved. Unfortunately this mahi is not being pushed by Deaf Aotearoa NZ (DANZ).