For the disabled technology can be a life-saver, until it’s not…

Earlier this year I was delighted to be notified that Text 911 was being rolled out in my area. Being deaf I use text a lot. In fact, I only have voice services on my cell phone for emergency use.

Registering with Text 911 was not quite as simple as I’d hoped. However, after trying to register my cell phone with my service provider, Fido, on many occasions and never receiving a confirmation I contacted Fido directly. Back in mid-April, they confirmed that I had been registered with them since the 1 Feb for the text 911 service. They sent me the instructions on how to use the service.

You actually have to make a normal 911 voice call and then wait for the 911 operator to send you a text message which you then respond to. Your cell phone must be able to maintain a voice call, so the operator can hear what’s going on at your end of the call, and text at the same time. I have a new iPhone 5 which meets the criteria.

Being registered for the text 911 service gave me peace of mind, as I’ve always struggled with 911 calls in the past. Either I can’t hear at all due to the environment I’m in and/or I can’t be heard as I speak very softly. Yesterday, of course, I was fighting to breathe so speaking at all was almost impossible.

However, when I called 911 yesterday to request an ambulance I didn’t get the 911 text that I was expecting. As a result, I had to guess what the operator was saying as I could make out very little and I had to fight even harder than usual to be understood. All of this, took up a lot of time that if I had been in full anaphylaxis could have been the difference between life and death. Thankfully, I was in a biphasic reaction and while, terrifying, it didn’t threaten my life.

Being someone who believes in being prepared I am also registered with the Sault Ste. Marie Vulnerable Persons Registry. I’d even updated it since I’ve been suffering such immense breathing difficulties to state that I can’t speak well or easily as well as being deaf.

Despite this, the 911 Operator didn’t appear to have this information when I called. Neither did my address get provided to them, linked to my cell phone number as well as my home number, as I had expected.

So today I contacted the Text911 service and the Sault Ste. Marie VPR. I haven’t heard back from the VPR yet but the Text911 service has taken my concerns very seriously and escalated them to the President of Fido, my service provider. Fido has been in touch to confirm the information and is investigating further.

I look forward to getting answers from all concerned.

In the meantime, though it made me realise how much I am currently relying on technology.

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My home is set up with light alerts on the telephone, doorbell, alarm clock, smoke alarms and in response to any persistent sound near the monitors in my bedroom or living room. My hairdryer or the vacuum cleaner will set them off, which can be quite entertaining! I also have a pager I can carry that vibrates so if I’m going to be somewhere in the house, or out in the garden, where I can’t see the lights I can be paged instead.

The only problem with this is that despite signs on my doors stating that I’m deaf and use a service dog, people think that my doorbell isn’t working because they can’t hear it ring. This is the secret people, it doesn’t ring! Why would it ring in a house set up for a deaf person?

So on the few occasions that people come to my home, that I’m not expecting and already looking out for they often start to leave before I get a chance to actually open the door.

This aside, I rely on this technology to keep me safe. I augment it with my service dog who is likely more reliable, but he is a living being and not perfect.

Those companies that insist on telephone use aside (I’ve written about that a number of times now in previous Blogs) I’ve been able to manage much of my life from within the safety of my own home. Secure messaging, online facilities and text messaging have all been enabling technologies for me. Additionally, a number of administrative staff have gone out of their way to help me using their personal cell phones to text me about medical appointments rather that calling. Others have realised that they don’t have alternatives to voice calls and are now establishing alternate (non-voice) contact methods for people like me. In the meantime, I am looking into services such as email-to-fax as most organisations do still use fax machines!

Beyond that being able to text my friends and family have really helped alleviate my isolation. Even though I am a natural introvert I still need to spend time around people, and not being able to for days on end is very odd.

I’m fortunate in that I have friends and family who have chatted with me by text for hours on occasion. I am so grateful for both them and the technology that has enabled this contact for me.

Having such technology is liberating. However, it’s also terrifying when it failed like it did yesterday. Especially, when that technology is designed to help people just like me, the deaf, mute and/or hard of hearing.

I understand that technology is not 100% reliable. However, it is now the 21st Century and it is time that the disabled, who are often so reliant on technology, are not put at such risk when technology fails.

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It’s not just an inconvenience for us, it can be the difference between life and death. The Soo VPR came about in response to Lewis Wheelan’s death in 2003 during the Ontario blackout because he needed electrical power to survive.

In hindsight, I should have hung up my cell phone and repeated my 911 call from my landline which would have automatically provided my address to the operator. However, when I didn’t get the 911 text response that I was expecting when I called 911 I was panicky and not thinking straight.

My home phone was several feet away from me and walking that distance may have been too much for my lungs to have managed at that point anyway.

I am very grateful for the 911 Operator who worked exceptionally hard with me to understand me and helped keep me calm while I then waited for the paramedics.

I can’t imagine being on the other end of that kind of call where you can hear the person unable to breathe, their struggling and fighting to get a single word out, and their throat closing resulting in what must be horrendous choking sounds. It’s bad enough to live through; it must be awful to be the lifeline for that person knowing that you can do nothing but get information to the paramedics as fast as possible.

So if you know any 911 operators, please thank them for me!

The paramedics were also phenomenal, as were the staff at Emerg. I’m thankful to all of them.

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But my plea is to those who provide technology solutions, such as text 911, PLEASE make these reliable and available 24/7. I know it’s tough to do but it’s my life, and others, at stake.

It matters.

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