Thoughts on autism, religion, culture and language and their intersections: Two communities

In the comments of yesterday’s post, Scottie asked me if there is any way he could provide support to the autistic community. I think it’s important for non-autistic people to listen to what we have to say, what our experiences are, and not dismiss our reality. One of the hurdles the autistic community has in getting our message out to the wider community is that our voice is often drowned out by a more vocal community – the autism community – and it has money and power on its side.

Before non autistics can really support us they need to understand the difference between the autistic community and the autism community. The autistic community and the autism community are two different groups of people who have different perspectives and goals regarding autism.

The autistic community is composed of people who are actually autistic, meaning we have a neurological condition that affects our sensory processing, communication, social interaction, and behaviour. The autistic community advocates for the acceptance and inclusion of autistic people in society, as well as the recognition of our human rights and dignity. The autistic community also celebrates the diversity and strengths of autistic people, and rejects the idea that autism is a disease or a disorder that needs to be cured or prevented. The autistic community prefers identity-first language, such as “autistic person” or “autistic”, rather than person-first language, such as “person with autism” or “person on the spectrum”. The autistic community uses the rainbow infinity symbol as a sign of pride and solidarity.

The autism community is composed of people who are not autistic themselves, but have some involvement with autistic people, such as parents, caregivers, therapists, doctors, researchers, educators, and advocates. The autism community may have different views and opinions on autism, depending on their level of knowledge, experience, and empathy. Some members of the autism community may support the goals and values of the autistic community, and respect the voices and choices of autistic people. They may use respectful language and symbols, such as the puzzle piece with a heart, to show their support and allyship This is the type of supporter we need.

However, the majority of members of the autism community tend to have a negative or paternalistic attitude towards autism, and see it as a problem or a burden that needs to be solved or managed. They may use harmful language and symbols, such as the puzzle piece without a heart, to imply that autistic people are missing or broken. They may also promote interventions or treatments that are abusive or ineffective, such as Applied Behaviour Analysis (ABA), conversion therapy, or bleach enemas. Some refuse to vaccinate their children, fearing autism more than the harm from diseases the vaccines prevent, and sometimes going to the extreme of calling for a ban on early childhood vaccinations altogether.

The differences between the autistic community and the autism community can lead to conflicts and misunderstandings, especially when it comes to issues such as diagnosis, education, health care, research, advocacy, and representation. Therefore, it is especially important for the autism community to listen to, and learn from, the autistic community, as we are the ones who have the lived experience of being autistic. The best way to understand autism is not by studying it from the outside, but by listening to the voices of those who live it every day.

GED: torture, not treatment

One has to wonder at the mindset of some American judges. In 2020 a federal judge overturned a ban on the use of GED devices issued by the FDA. The graduated electronic decelerator (GED), is a device that delivers painful electric shocks to the skin of people with developmental disabilities or behavioural problems as a form of punishment or aversive conditioning. It’s an extreme form of conversion therapy or ABA. The GED is used at the Judge Rotenberg Educational Center (JREC) in Canton, Massachusetts, which is the only institution in the world that still uses this method.

The GED shocks are much more powerful than a taser, which delivers about 1.76 milliamps of current at 19 pulses per second for five seconds. The GED delivers up to 45 milliamps of current at 66 pulses per second for two seconds. The shocks are administered by remote control by staff members who observe the behaviour of the students through video cameras. The students wear electrodes attached to their arms, legs, torso, or fingers, 24/7 and can receive shocks for minor infractions such as standing up, swearing, or refusing to follow instructions.

The use of the GED has been widely condemned by human rights groups, disability advocates, medical experts, and former students and staff members of JREC as a form of torture, abuse, and violation of human dignity. The United Nations has called for a ban on the GED and other forms of aversive interventions in 2013, stating that they amount to torture and ill-treatment. The U.S. Food and Drug Administration (FDA) has also banned the GED in March 2020, after finding that it poses an unreasonable and substantial risk of illness or injury to the public health.

However, JREC challenged the FDA ban in court, arguing that the GED is a lifesaving treatment for some students who have severe and self-injurious behaviours. JREC claims that the GED is based on scientific principles of applied behaviour analysis (ABA) and that it has parental consent and court approval for its use. In July 2020, a federal judge granted a preliminary injunction that temporarily blocked the FDA ban from taking effect until the case is resolved.

ABA is a form of conversion therapy. It’s less so a treatment than it is a form of compliance training. It is horrific, barbaric and has rightly been condemned as torture. No living creature, should be subjected to such ill-treatment let alone human beings. I have mentioned before how autistic people are frequently viewed as being less than human. This is another example.

While the use of GED is always a form of ill-treatment, some students have been subjected to absolutely horrifying torture:

• One student was regularly electrocuted to wake him up in the morning as he frequently slept through the wake-up call. The shock would often cause him to urinate involuntarily. If it was discovered that he had wet himself, he would be shocked again as punishment.
• A student was shocked 31 times while being tied to a restraint board for seven hours. His crime? Refusing to take off his jacket when told to. The student was hospitalised for a month after the “treatment”.
• A student was shocked 77 times in just one night, after a prank caller instructed staff to do so.

The JREC has a history of abuse stretching back to its inception in 1971 and yet a judge took the word of JRED staff that GED was humane over the opposing view of the FDA, the UN, Health professionals, human rights advocates and former students. The case is still waiting to be resolved three years after the judge issued the preliminary injunction. Absolutely shameful.

No ID needed to vote – or enrol – in New Zealand

As a number of my American blogging friends have concerns about how some US states are making it difficult to register and vote, I thought it timely to look at the situation in another developed nation, where post election inquiry after post election inquiry have concluded the risks of voter personation (voter fraud) are far outweighed by the advantages of voter participation when enrolling and voting are made as easy and unrestricted as is humanly possible.

So here in Aotearoa, the Electoral Commission trusts our word when we enrol and when we vote, and it seems they have good reason to as fewer than 200 cases of voter personation have been detected following a general election. While the police have issued warnings to offenders, no prosecutions were brought following the 2014, 2017 and 2020 elections.

Here’s the thing: voter personation is so rare that even if it increased by two orders of magnitude it’s unlikely to have any effect on election results. So why not make enrolment and voting very easy, even if a very few do abuse the privilege? Participation in the democratic process, including by the disadvantaged, or perhaps especially for and by the disadvantaged, is vital if a nation is to maintain or expand the freedoms and wellbeing of its citizens. More than one Kiwi politician has stated they entered politics on behalf of the marginalised, discriminated against, oppressed and forgotten because the privileged and advantaged can take care of themselves.

Even in moments of my least trust in American democracy, I cannot imagine American voters being so untrustworthy that voter fraud can have any meaningful effect on the outcome of presidential and congressional elections – even if fraud occurred at 100 times the rate of personation here. The only conclusion I can draw, is, that unlike New Zealand where the politicians want everyone to participate in the democratic process, the politicians in many US states want only those who are their supporters to participate. How close to reality is my conclusion?

No ID needed to vote – or enrol – in New Zealand

Vote NZ 2023 (PSA #2) How to vote

We Kiwis are perhaps fortunate in that being able to enrol and vote in elections and referendums is easy as. In fact there’s no need to prove identification to do either! (I’ll cover that in an upcoming blog post.)

When it comes to enrolling, then if you’re eligible (NZ citizen or permanent resident and are over 18 and have lived in NZ continuously for 12 months at some time), then by law you are required to enrol. See my previous post on how to do that. However, you can choose whether or not to vote. You can enrol right up to the day before election day. And if you aren’t enrolled and still wish to vote, you still can by casting a special vote.

I want to remind you that it isn’t necessary to cast your vote at a voting place in your electorate. You can vote at any voting place anywhere in Aotearoa either on election day or in the two weeks preceding election day. As I said, easy as!

How to vote

Vote NZ 2023 (PSA #1) How to enrol

Barry’s Public Service Announcement #1.

To use the Kiwi vernacular, enrolling to vote is easy as! So, if you’re a New Zealand citizen or a permanent resident of New Zealand, make sure you are enrolled.

How to enrol to vote (Turn on Closed Captions if you the the Kiwi Accent difficult to understand)

The 2023 New Zealand general election to determine the composition of the 54th Parliament of Aotearoa will be held on Saturday, 14 October 2023. The Electoral Commission has confirmed the timetable for the election following the Prime Minister’s announcement of the election date. The key dates for the election are as follows:

• Friday 14 July: Regulated period for election advertising expenses begins
• Friday 8 September: Dissolution of Parliament
• Sunday 10 September: Writ Day – the Governor General issues formal direction to the Electoral Commission to hold the election
• Noon, Friday 15 September: Nominations close for candidates
• Wednesday 27 September: Overseas voting starts
• Monday 2 October: Advance voting starts
• Friday 13 October: Advance voting ends. Regulated period ends. All election advertising must end. Signs must be taken down by midnight.
• Saturday 14 October: Election day. Voting places open from 9.00am to 7.00pm. Election night. Preliminary election results released progressively from 7.00pm as counting at each voting place is completed.
• Friday 3 November: Official results for the 2023 General Election declared
• Thursday 9 November: Last day for the return of the writ
• At the election, you’ll get to vote for the parties and candidates you want to represent you in Parliament. You need to be enrolled to vote in the election. To enrol and vote, you must:
  • be 18 years or older
  • be a New Zealand citizen or permanent resident, and
  • have lived in New Zealand for 12 months or more continuously at some time in your life.
• If you enrol by Sunday 10 September, the Electoral Commission will send you information about the election in the mail. This will include an EasyVote card which makes voting easier

[Reblog] I’m not White, I’m skin coloured!

This is a reblog of a post I made 5 years ago, and as my creative juices are still running dry, this is perhaps, given the amount of intolerance that abounds in some parts of the world, a timely reminder to myself that I still have a role to play ensuring future generations are more tolerant and accepting of differences than the present one.

How do I know I’m not white? My six year old grandchild told me!

This morning I was hanging up the washing. It’s a task that has fallen to me as I have a 35 cm (14 inch) height advantage over my wife. Anyway, young T was with me and we were taking turns naming the colour of items as I hung them up. On hanging up a particular towel, I called out “Brown”.

“Don’t be silly, Jii-chan. It’s skin colour!”

(Jii-chan means grandfather in Japanese, and distinguishes me from their paternal grandfather, who they call Opa). The towel was a light brown, almost beige colour, and it never occurred to me to think of it in any other terms.

So I corrected myself and said “Well, it’s really a light brown colour, don’t you think?”, to which he again asserted that it was skin colour and not brown – not even light brown.

In light of a recent post by Clare (Why I’m talking to white people about race), I was struck by the fact that instead of describing people in terms of colour, young T was describing colour in terms of people.

“But not everybody’s skin is the same colour”, I reminded him.

“I know that! You’re a silly Jii-chan.”

“So, if you told someone that you dried yourself with a skin coloured towel, what colour would they think it was?”

A moment in thought, then a lightbulb went off. “Oh yeah! I’d have to say whose skin colour it was like!”

“When I visited America, everyone said I was white.”

“That’s silly, Jii-chan. Nobody’s white. Nobody’s the same colour as that towel”, said young T pointing to a white towel I’d just hung up. I have to agree.

In Aotearoa New Zealand it’s rare to refer to people in terms of colour. It’s more typical to refer to their ancestral cultural group or place of origin. Instead of hearing people described as white, black, brown, red or yellow, you’re more likely to hear them described as European, Pākehā, Polynesian, Māori, Native American, African, Chinese, Indian etc. So I’m not surprised he had no idea, that I’d be identified as being white in many other parts of the world.

That doesn’t mean that young T isn’t aware of cultural differences. Even at six, he’s aware that protocols differ depending where one is, and what might be acceptable within one group might not be acceptable within another. I want him to be familiar and comfortable in the cultures of his grandparents: Pākehā, Japanese and Māori, but I hope he never learns to associate those cultures and the differences between them with race. In fact I hope he never learns the concept of race. Culture and ethnicity, yes. But race, no.

On the other hand, when he’s ready, I want him to understand that history has not always been kind to some communities, and some ethnic groups have been disadvantaged by the actions of other groups, including our own. We, as members of humanity, have a responsibility not to allow the status quo to continue, but to take an active role in striving for a more equitable world.