Did you know that your iPhone can now act as a TTY device?

I have been having issues with the fact that to resolve a security issue with my credit card I can only use the telephone. They won’t allow you to deal with these issues by online chat or secure messaging. As you know I’m deaf, and the telephone is difficult for me. My new hearing aids help but for something as important as my finances I felt that it was important that I could communicate clearly.

So I complained to my bank that they only allowed telephone calls and didn’t appear to have a TTY number. (A TTY is text telephone). Not that I thought that I could call them using TTY as I didn’t think that I had a device; but it was the principle that I disagree with.

However, they kindly informed me that my iPhone is now capable of acting as a TTY device! So a few hours later I have my iPhone set up to act as a TTY device and accounts for IP relay or VRS (Video Relay Service).

I still didn’t have a TTY number for my bank. However, I could now contact them using relay services. Relay services are where I type my message to an operator who then speaks on my behalf to the person I’m communicating with. They type that person’s responses back to me so that the whole conversation is in text for me.

I’m proud to say that I just completed my first TTY relay service call! I actually used IP relay service as that uses my computer and gave me the advantage of a full size keyboard to work with rather than my iPhone’s keyboard. But the same system will work from my iPhone too.

I still disagree with the bank only allowing phone calls to deal with security issues. Especially, as using Relay I have to provide my account number, PIN and security question answers via the operator. So an unknown person now has my bank details. Ironically, that doesn’t seem very secure to me.

Just to be safe I have now changed my PIN. I also assume that there would be severe consequences for any Relay operator using the information they communicate in a call.

Anyway, for those of you that need it you can set up your phone under Settings, General, Accessibility, TTY. It’s great to be able to communicate so much more easily. Relay services can be used for personal calls too. Though the thought of having my conversation communicated through a third party disturbs me. However, it does mean that in a non 911 emergency I can get hold of help more easily than just relying on text.

It’s nice to see technology actually being used to improve accessibility. Welcome to the 21st Century!

To seasonal camp or travel…

So, as some of you may remember, I bought a new little travel trailer back in September 2018. I say new, but it was made in 1972. So it’s just a year younger than I am. However, it’s in great shape and I had it completely re-wired, last year, before it went into storage for the winter.

Now that the new season is almost upon us (it starts the May long weekend) I have a decision to make. In the past I’ve always travelled with my trailer. I took my previous Boler to Prince Edward Island through Canada and to Rhode Island through the USA on different trips.

Last year I camped with my new trailer in Sturgeon Falls for the long weekend after buying it in North Bay. I like camping and I like travelling so it seems like I just need to decide where to travel to this summer.

So that was my original plan. I booked a shake-down camp in St Ignace the week following the long weekend in May and started planning a much longer trip to meet friends at their seasonal site in Alberta. But then I saw a posting by the Busy Beaver Campground on St Joseph’s Island just 45 minutes away. They have a few seasonal sites available. So yesterday I went out to see them for myself.

Two of the three sites wouldn’t work for me. One was very exposed and my fibreglass trailer would just become an oven without any shade. It had a great view of the water though! The second was tucked in between two other larger trailers. It had shade and a great view but I have two dogs and one of the big trailers had little children. I could see me spending my whole summer trying to get them to leave the dogs alone. It would also have been very difficult to enjoy if I didn’t get on with the owners of the two big trailers as I’d have to walk between their sites to get anywhere.

That brings me to the third. Which is tucked into the trees so it gets plenty of shade. It doesn’t have a perfect view but it’s not bad either and it’s less than a minute’s walk to get a better view. So I’m debating what to do…

Fortunately, Steve & Lorraine (owners and managers of the Busy Beaver Campground) don’t know for sure yet that the third site is available so I have some time to think. Do I want to try a year of seasonal camping in the same place?

On one level it appeals a great deal. Much as I love travelling it is a hassle to make and break camp every day or two. I love the idea of being able to leave clothes, things to do and some food there week to week.

It could be nice to be next to the same group of campers all summer. Though that could be bad too if we don’t get along! But I’m not too concerned with that as I can usually get along with most people and the campsite is strict about campers being quiet at night-time.

Not having a bathroom in my trailer the bathrooms on site were important to see and they are great. Newly renovated and exceptionally clean. They’re also accessed with a key so only campers on site can use them.

The good news is that the campsite doesn’t have WIFI. The bad news is that the campsite doesn’t have WIFI. Thankfully, I did have cell coverage by the office at least. I forgot to check at the actual campsites. So I wouldn’t be out of touch completely.

Given that I plan to spend most of my summer conducting a systematic review which entails a great deal of reading this could work out perfectly. Little distractions and plenty of time to work on my research. I just have to remember to make sure that I have copies of papers on my laptop itself and not just on my G drive.

So, assuming the site that I want is available I have to decide do I want to seasonal camp?

The maths is pretty simple. It works out that I need to spend 7-9 nights a month at the campsite to simply break even on what the cost of nightly camps would have been. If I am there more than that I gain.

Additionally, if I want to stay for next year I can store my trailer on the site and not have to move it. That appeals too and would save the storage fee that I’m currently paying.

Given my disabilities a seasonal site may be the safer option for me as well.

So it all comes down to the fact that I have to decide if I’m ready to have my wings clipped or not.

I’ll let you know what I decide…

All in a day’s work… for a service dog

A friend, and colleague, of mine has been visiting me this week from Australia. While he is here he is giving two masterclasses as well as a public talk. The public talk was last night, the 17th April 2019.

Kevin works at ICRAR as a Senior Research Fellow. His talk was entitled “Radio Astronomy, The Square Kilometre Array and Citizen Science: Canada & Australia” and approximately 20 people attended, most of whom were from the local Sault Ste Marie community.

During his talk Kevin explained that machine learning, whilst advancing rapidly, is still only capable of learning one thing at a time. To demonstrate what he meant he used Kai. Kai was curled up dozing at my feet. Until I set off the alarm on my phone at which point he immediately jumped up and alerted me to the sound nicely demonstrating his work as a hearing dog.

However, Kai is also trained for a number of other issues including mobility and to demonstrate this I dropped a set of keys. Kai immediately picked them up and gave them to me (which is what you can see in the picture for this Blog).

Kai also demonstrated his training when Kevin bounced a ball at a wall near him, and he ignored it. Kai also ignored a water bottle that was dropped and rolled near him too. He was very proud of himself!

What was interesting though was that while we used Kai as an example of how even a dog has more reasoning capability than machine learning/artificial intelligence does he also did something else.

There was a hard of hearing lady in the audience. (Actually it was a case of the deaf leading the deaf last night as Kevin and I are both hard of hearing and there were several members of the audience who were hard of hearing as well). Anyway, after the talk this lady came to speak to me.

Seeing Kai work had been a realisation for her that perhaps a service dog would be able to give her some independence back. I gladly discussed the kinds of hearing tasks that Kai is trained for and informed her of the Lions program for hearing dogs.

So in one night Kai demonstrated his training by remaining calm throughout the presentation, despite Kevin making some interesting noises: alerted to an alarm, picked up a set of dropped keys and demonstrated to others just how a service dog can help a disabled person retain, or regain, their independence.

For Kai of course, this was all in a day’s work!

Photograph Credit: Megan Parlowe

Invisible disabilities… Thank you Sault Ste. Marie…

I saw a new doctor this morning and as part of their intake I had to provide a list of my medical conditions. I started listing them but the nurse and I got stuck spelling the first of them, Osteogenesis Imperfecta, so I pulled up my medical ID on my phone. 18 conditions later they then made the ‘mistake’ of asking about my allergies. 13 allergies, including several anaphylaxis, later we were done. Thankfully, I’d actually thought to take a list of my current medications with me so I simply gave them the list rather than listing all 14.

As you can imagine going through that little lot gave me pause to think. Not one of my conditions is visible or readily apparent. My use of a service dog does mean that I’m disabled but other than that clue you would never know that I was invisibly disabled, let alone the extent of it.

Being a member of several service dog groups on Facebook I’m aware of a number of handlers that have access issues because ‘they don’t look disabled’ or ‘they’re too young to be disabled’. I guess at 47 that I don’t fit that last one anymore. However, I certainly fit the first.

Despite this, I’ve never had an access issue. Once, when staying in a hotel in the USA I was asked the two questions allowed by the ADA. But otherwise I’ve never even been asked for the doctor’s letter that I must carry with me in Ontario.

So I just wanted to thank the people in my town of Sault Ste Marie. Thank you for treating me as I wish to be treated. That is, just like everybody else.

Despite my long list of invisible disabilities people treat me as me, even with a service dog. Thank you!

One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!

Just for one day I started to feel like myself again….

Yesterday I felt like myself again, just for a day. It was wonderful. I packed up snacks and emergency survival equipment, loaded up the dogs and hit the road. It was wonderful to feel well enough to just drive….

So Molly, Kai and I went to visit the home of Winnie-the-Pooh, White River, Ontario.

The day was mostly spent driving as it’s a good 4 1/2 hours from Sault Ste. Marie. However, it was a nice sunny day for the most part. Though I drove through two storms on the way home just in time to beat the massive thunderstorm that hit last night.

Some gorgeous views and amazing sights. I saw moose and birds of prey. The lakes were starting to unfreeze so the edges were mixed between waves and open water and icebergs. Some of the waterfalls were just flourishing with the snowmelt.

I loved the sense of humour of whoever was naming some of the lakes. At one point there was ‘Mom Lake’ and ‘Dad Lake’ just next to it. Just as I was wondering what you’d call a third lake I came upon ‘Orphan Lake’ just far enough from Mom and Dad to be orphaned!

It was a lovely day out and the dogs loved the ride and the walk by the Winnie-the-Pooh memorial. Next time we’ll have to go when the museum is actually open and see if I can handle the scents.

However, for right now just getting out for the day was such a huge step for me after almost a year of being mostly housebound. I’m only extending my limits to my vehicle but now that I’m well enough to drive like that again…. it’s wonderful!!

Even with the thunderstorm last night all three of us slept well last night!!

Why labels, and getting the right labels, are important for some disabled people

I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.

More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.

Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.

However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.

Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.

However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.

Sparrows and Penguins

I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.

So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.