Why labelling all picture communication as PECS is harmful

“Hello, I have a non verbal child, and we have been using PECS” or “MY child has been using a PECS board….” are things I hear from parents often, and yet 90% of the time it’s not even close, it is just a picture based board or symbol based AAC program on a device.

This post is going to try explain why you should NEVER confuse picture/symbol based communication with actual PECS. If your child IS using PECS, stop now because this is harming them!

PECS stands for Picture Exchange Communication System, and it is entwined in ABA (Applied Behaviour Analysis) which is a highly abusive therapy that aims to force Autistic people to act Neurotypical (NT). How it works is the child has an adult (enforcer) sit behind them and another adult (the recipient) sitting in front of them..the recipient will hold out something the child wants and when the child reaches out for it, the enforcer will grab their hand and force them to grab a card with the picture of the object and hand it to the recipient, then, and only then will the child receive the desired object. This teaches the child that the only way they can get what they want, is by having to exchange the matching card which in turn teaches them they have no autonomy. Also this system was created by the company in the second link, and they get REALLY mad if anyone uses the term “PECS” if it isn’t.

But if you have made or been given a board for your child that looks similar, or your child has been given a dedicated device or tablet with communication software that is symbol based on it, go for it….as long as you know that at no time has no one FORCED your child to use it.

Picture Exchange Communication System

Introduction to PECS

AAC vs Mouth

I don’t know why, but it seems if you can’t use your mouth or use sign language, any other mode of communication is considered not even worth taking notice of….I mean hey, the person obviously hasn’t the intelligence to be able to communicate properly right? Let’s not go there, there are lots of very intelligent people who used augmented alternative communication….lets start with Someone everyone worldwide knows, Stephen Hawking.

Stephen Hawking at the age of 21 discovered he had ALS also known as Motor Neuron Disease, as he got older and the disease progressed he not once gave in and with the aid of a switch controlled AAC he spoke about his discovery of black holes.

I had a friend who had Spastic Quadriplegic CerebralPalsy, he was the smarted guy I knew, who wanted to one day be the first disabled person in parliament (sadly he passed away before he could). He could tell you everything you wanted to know about elections and was a much welcomed member of the Kirk branch (the disability branch of the NZ Labour party), but sadly he was often denied the ability to show people there was someone in the body that refused to cooperate…all because he used Augmented alternative communication.

It seems just like hearing, mouth words tell people you are intelligent and are worthy of their time. Why? I mean seriously I know people who can use mouth words but oh my gosh, what comes out of their mouth is questionable, yet I would happily sit and listen to my friend all day given half a chance, and learn about elections and how Parliament worked!

My ideal world would be one where it doesn’t matter whether you speak via mouth words or AAC, you are valued either way and treated as an equal. Where AAC users can join in a conversation and not be overlooked or have the people they are speaking to walk away because they can’t be bothered waiting for the person to finish their thoughts….. but we know dreams are free and this is not an ideal world is it?

Will you be the perfect communication partner? Will you sit with us as your equal and allow us to share with you what is in our heads? I promise you will not be disappointed.

Going places

When I started my blog, I just wanted to show people my world and share my opinion and views on things. I never thought in my wildest dreams that I would be getting emails saying someone was following me (and even being recognised by two blogs), nor did I ever think I would get paid for it (Invacare Aus/NZ).

I am just a ordinary guy (Ooh OK, maybe not THAT ordinary 😜) who likes to write and share my life and maybe I am becoming famous (don’t worry I won’t let it get to my head).

Until next time.

The world through the looking glass

I once knew a woman named Miriam*, who like me was deafblind but she also had an intellectual disability. Sadly Miriam was misunderstood and often there were complaints made about her by customers at her local Supermarket and I remember her mother saying they had been tress passed at one….see Miriam viewed her world through using a magnifying glass, she would hold it up to see what was in front of her and sometimes things in other people’s trollies would catch her attention so she would go and pick things up to have a look.

People instead of interacting with her would get angry and would complain to the shop Managers, when I heard of this I was sad….Miriam wasn’t hurting anyone nor was she trying to run away with anyone else’s shopping, she was just wanting to see what you were buying or see what you looked like.

The way we view the world is not the same, my world is blurry, I can see only a meter in front of me….unless you are in that range, you will just be a shape and colour (if that) and bright colours attract me (my Support Staff know that shopping may take a little while when I am with them). Someone else may be completely colour blind, or it maybe like a friend of mine who has 2D vision.

Please when see a person like Miriam or me, instead of being scared and/or angry, we are just exploring and would love for you to join us and learn about our world, come say “Hi” and ask questions, we are happy to answer.

*Not her real name.

Until next time, God bless and take care.


Helloo followers

Please excuse if there is the odd spelling mistake or double letters where only one is meant to be, I am excitedly stimming (trying to just so I can write this post 🤣🤣).

Whhy am I excitedly flappy and bouncy? Let me explain, every year an organisation called Elevate Christian Disability Trust holds a camp where disabled people from around New Zealand meet up at a beautiful retreat in a place called Totara Springs for Labour weekend and do lots of fun stuff while worshipping the LORD. This year because of COVID it is going to be held over Zoom instead and because of that I knew it would mean using all my energy straining to listen (being deafblind I would have to work harder to hear since the voice would be coming through laptop speakers)….prayers were said and calls went out by the organisers to find a volunteer NZSL Interpreter, they have been answered!!

The interpreter will come be with me on Saturday for the workshops and the fun night, but she is going to video the Pastor’s messages and send me the link so I can follow along on my iPad.

I am so, so excited right now as even though I will only her physically for one day….it’s one day I can fully participate with my fellow Christians (I will be joining in with some of my CFFD (Christian Fellowship For people with Disabilities) friends who attend).

GOD bless you all.

Monday, 6th April 2020

*Handwaves* Greetings

Today is a very special day in New Zealand for the Deaf community, it is the anniversary of the NZSL being recognised as an official language of our country.

One of 2 signs for “NZSL”.

Deaf all over New Zealand celebrated as finally, our beautiful language was recognised.

Today has been 12 days since NZ went into lockdown (although our house went into lockdown on the Saturday) and we have 911 confirmed and probable cases of COVID-19. I am getting through my library book (which was due on the 20th of March) and Orange is the new black.

Until next time.

Palm Sunday

*handwaves* Greetings

Today is Sunday the 5th of April 2020, in the Christian calendar this is Palm Sunday, the day Jesus started his journey to the ultimate sacrifice….his crucifixion.

Ok so New Zealand has been in lockdown now, since the 25th of March because of a virus called COVID-19 (Corona Virus 2019)….it is a pandemic which the world hasn’t had one since 1918 (Influenza pandemic). NZ has 883 confirmed and probable cases (and 156 recovered) and we have had 1 death (an old lady from the West coast).

So what does someone who is deafblind, autistic (which means I am used to routine) and due to Diabetes and vascular issues has to stay home, do during a lockdown? Watch Netflix, read and play on his phone, that’s what.

I have been getting in my daily dose of Orange is the new Black, and doing my bit to help my Support Worker with things like making my flatmates lunches, bringing one of my flatmates to the table and helping fold washing etc*.

I skyped with my Mum this afternoon, very proud of her.

Stephie in her car bed.

* Names not given for privacy.

Until next time, I leave you wth this scripture

“The Lord is my light and my salvation; whom shall I fear? the Lord is the strength of my life; of whom shall I be afraid?”
‭‭Psalms‬ ‭27:1‬ ‭KJV‬‬

A new way of blogging

I have decided to write this blog in a more journal style, so you get more of a feel for my life, though while in lockdown it may seem boring 😂.

I will tell you my daily activities and, yes I will still give the odd review if I feel something needs to be shared.

So my next blog entry tonight, will be in my new style.. you will get everything from my favourite scripture (or even one read that just fits the situation), pictures of the Cat I look after, and more about my day so you can see I live and see my world.

Jet Park Hotel, Auckland

So I came up yesterday afternoon on the bus for a Disability rights workshop and am staying at the Jet Park Hotel, I thought as a deafblind wheelchair user I would do a review of my room and the service received.

When you come in the door the room is reasonably spacious with a single and double bed, desk and a place for your suitcase.

Unfortunately because beds have feet in the middle, a hoist would not fit under them and the turning circle, unless you are in a paediatric wheelchair, you would scrape the walls but it can be done carefully.

This room was awesome in the fact that the light switches were huge!! I have never seen one like this in any other hotel….mind you this was in the new part of the hotel so not sure about the older rooms.

Now for the bathroom, if you were to move the glass stand, you can easily do a side transfer onto the toilet, sadly the bin was small and if you prefer to dispose of Contenance products in nappy bags like I do, they will not fit. The sink was accessible but sadly I cannot say the same for the shower as if you are short and or on your own, the thing that holds the removable shower head, cannot be lowered and I am not supposed to have my arms above my head!

The Staff are very welcoming and helpful, in fact they were amazing!! The meals were yummy, I had the Tomato and Ricotta Ravioli with Lemon cheese sauce, Parmesan and fried Sage for my main, and the dessert was a Chocolate flower pot with Orange mousse and Strawberry sorbet (highly recommend both!). For breakfast I had Eggs Benedict and orange juice.

*Please note, my opinion is my own, I was not payed for my review.

What NOT to do/say to a neurodiverse person/person with a disability

First I will start with the “What NOT to say”….some of these things are from experiences my friends have had. Just think If you wouldn’t ask/say it of a abled bodied person….DON’T ASK US!!

“You don’t look Autistic” Ok so what does Autistic look like? My friend Elijah* put it nicely once when we were talking “Once you have met one Autistic person, you have met one Autistic person”, another words, with any condition, everyone is different.

“If that was my child….” Yeah well fortunately for her/him, they aren’t! I have had the unfortunate experience of hearing this comment and luckily for the old lady, she did not realise that my friend in the seat next to her at the hairdressers, was the mother of said child. Let me tell you, this comment is harmful as usually the child it is aimed at, is having a meltdown (and can we please STOP calling tantrums, meltdowns..they are NOT the same!!), the parent/guardian is already stressed out from seeing their child/charge in pain from sensory overload, what would be more helpful would be a “is there anything I can do?”, “are you OK?” and “would you like me to get you anything?”.. Trust me, not only will this help the child, but the parent/guardian will be able to be less stressed.

“you must be faking it” The amount of times I read or hear this being said about the blind community is sickening! No we are NOT faking it, we have Ophthalmology records to prove it..no you may not ask to see them! There is another community that hears this comment quite often to, and that is the those with chronic pain or Fibromyalgia..again we are NOT faking it! Why would we want to “pretend” to be in constant pain, or to be blind? Because of this accusation, a campaign started by blind people around the world, has gone viral after a post was seen with a photo of a blind woman who was walking with her white cane and holding her phone, it was captioned “when you see it, press like”..we wanted to educate people on the advantage of technology for blind and vision impaired people, so we took photos of ourselves with our canes and using our phones with the hashtag #BlindPeopleUsePhones!.

“How do you have sex?” Yes wheelchair users get asked this frequently and really, it is NONE OF YOUR BUSINESS!!

“You can hear me fine” I get this one ALOT! Usually you and I are the only ones in the room, usually you are facing me and only ONE person is talking at a time. You have obviously never seen me in a situation where it is noisy, too many people are talking at once and are not looking at me, or the person is trying to get my attention from a distance/another room….

Now for the what NOT to do, take note because these things are pet peeves to many of us!

Lean on a persons wheelchair: Yeah nah, our chairs are given to us to get around, not to prop you up because you’re tired!

Grab the handles of the chair: Again no, just NO..whether you want to get past us, or “help” us, just ASK, we can talk (and even those who are non verbal, will be able to communicate) and seriously the next person who does it to me without permission..better be prepared for a good feel-up, see how they like it!

Talk to us like we are not all there: Yees Ii caan underrsstaand yoou, you do NOT need to talk to me slowly..not only is it highly annoying, it makes YOU look like an ass.

Act like we are aliens: This goes with the one above..the amount of times I go into a shop on my own, and the assistants freak out like they have never seen a person in a wheelchair before, and you can see they are looking for my Support worker to “talk” for me

Talk to my Support worker, instead of me: Unless I have specially requested them to do so, I do the talking!! This goes with the last two as quite often I will go into a shop with a Support Worker and they will get “What would he like?”..HELLO I am right here! My Support worker loves seeing the reactions on the shop persons face when they say “we don’t know, ask him” (one friend added “he CAN talk, you know?”).

Please send me a comment if I have missed anything.