Why you are not entitled to my life story

Hello I am that faceless person you see who is in the Supermarket or on the bus and is not wearing a mask.

You may be thinking (or even muttering) to yourself “I am sick and tired of people NOT following the rules”, me too! You see I am a rule follower, I scan whenever I see a QR code, I sanitise my hands and I wish I could wear a mask…. I really do but wearing a mask would actually be more detrimental to me than not wearing one so I am one of the few who are exempt.

I have a special card on my phone (others have a physical card), that explains I am exempt that I can bring up at any time when needed and I am happy to show it.

But unless you are the Bus driver, shop owner or the Supermarket/Pharmacy staff, you have no right to my story and if you ask me, I am not going to answer you!

All you need to know is I am in the shop with no mask on, for me to get in the Supermarket/Pharmacy I would have had to get passed Staff at the front door and they were happy with my reasoning for not wearing one.

I am NOT putting going to stand in front of you and tell YOU, Mr/Ms Nobody my personal information just so YOU can get your daily dose of entitlement!

Why I don’t like the term “Special needs”

Every time I hear someone get asked what they do for a job, and they answer “I work with special needs children”, I cringe as this tells me one thing, they don’t think of our needs as the same as any other childs.

Here I am going to tell you why this is problematic, a able bodied child needs access to clothing, food, communication, a warm home and an education….and so do we (gasp!). But as soon as you start using the term “special needs” this encourages discrimination, schools try their best to not have to have the child for the whole day/week or in some cases, at all or they do their best to not have to accommodate the child (I only got full time Teacher Aid help in High school). Sometimes families are denied housing or the neighbours turn against them (there was a case where a family was literally ran out of their neighbourhood because of their Autistic son).

Instead of using “Special needs” let’s say “accomodations” or “adaptions”. So let’s look back at the above sentence and see the difference if we change a word or two “I work with children who require accommodations” or hmm better yet “I work with children”!

Choiceworks Calendar review

I am a visual person (yeah I know what you’re thinking “but you’re blind!”, but hey what can I say), and I find written diaries overwhelming. Not only do I have a physical weekly planner kindly made for me by my good friend Tim, but I started using a visual schedule app CW Calendar by a company called Choiceworks.

It is amazing, as you can add your own images as well as have access to around 180 default symbols, also it has a feature where you can ask it to count down the days until an event which helps to alleviate anxiety!

I rate it 9/10 as you can’t delete symbols that you didn’t add.

A picture of 4 elongated lines, the 28 June has a long yellow border on it.  At the bottom of the screen at the left is “Week, Month, Today” and at the right it says “Share” and “123”.
Week view of the schedule.
Schedule with the 28 June has a yellow border.  At the bottom is “Week, Month, Today” at the left, and “Share” and “123” at the right of screen.
Month view, of the schedule.
The “today” schedule, showing 3 symbols 1 has been moved to the right, where it has a big green tick on it into the “All done” box.
Day schedule.
The month schedule with a white box in front of it, saying “Print this view”, “Email this view (PDF)”, “Share calendar” and “Export calendar”.
Month schedule with options to share the schedule.
A list of upcoming events, with the words “Count days until” above.

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.

Stimmy

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