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.

Accessible bus ride

Everyone who knows me, knows if you say “accessible transport”, I am on it like a fish to water. So when I first heard about the EasyRider in the 2000s I got excited and wanted to see this for myself, unfortunately I would not get to until today and seriously, to be able to go somewhere in the same vehicle as my able bodied companions is AMAZING!!

The bus has low steps at the front of it for those who have limited mobility but are still able to stand and walk, and at the back? You guessed it, a hoist!! Dirk is very friendly and makes sure you are comfortable, he is an amazing driver.

EasyRider with the steps and hoist (Photo from the EasyRider website).

Inside of the EasyRider (Photo taken from the EasyRider website).

To read more about this amazing bus and the story behind it, go to https://www.easyrider.co.nz/.

This review is from my opinion alone and I am not being endorsed by EasyRider NZ.

Building by touch

As a young child I loved playing with LEGO, and as I got older I still do. And now they have the TECHNIC sets, I LOVE things that work but when you have 1/60 vision and only one eye that works, things can be….interesting to say the least.

So when my best friend of 39 years, came up from Otago (in the South Island) with her partner to attend a LEGO convention, THEN surprise me by coming to Hamilton before flying home, they kindly gave me a TECHNIC set (Kylee & Damian, you are amazing, love you long time).

I joined the LEGO Fandom NZ Facebook page and OMG I have met some amazing people. I started building and remembered how therapeutic it was, and my Support worker wanted in to.

Note: I am not going to do photo descriptions this time, next time I will do my best to as I plan to blog my builds.