Thursday, April 03, 2008


To make a difference...

A starting point. I have just sent off this email:

Dear Mr Regional General Manager of the biggest and formerly government owned telecommunications company in Australia

I am writing to seek Telstra's assistance in regard to communications for someone with a very special need. At this point I am not sure exactly what is needed, but Telstra/Bigpond is my starting point. I am hoping that, as the Area General Manager of Telstra Country Wide you might be able to help in some way - at the very least with putting me in touch with the right people to help me work out the best options for internet access for this particular person. At the most? - well... I have my fingers crossed.

I have come to know a young woman, Donna, who, due to a progressive muscle wasting disease (Polymyositis), is permanently confined to hospital in Coffs Harbour. (She is the mother of my daughter's friend - and, at 38 years old, I consider her young. Too young to be living this sort of life...) She cannot walk, and she has a tracheotomy - where she is connected by tube to oxygen to help her breathe nearly 24 hours a day. She can talk, but because of the tracheotomy, her voice comes out as a whisper, which, I have to say, requires intense concentration to interpret.

Naturally meeting anyone with such a condition gives you a cold hard reality check on your own life (and makes you realise how lucky you are.) Imagine being so immobile. Imagine living in hospital, and not being able to see your daughter every day. That would be hard enough. But due to the oxygen requirements and this tracheotomy, she is basically without the ability to communicate in a way that most of us take for granted. She can't talk on the phone, so she relies, for social interaction, on the visits by family (who live 30 km away ....), the occasional friend, and the transient contact of the nurses and medicos in the hospital. Many times I have had to brush away the tears as I left, imagining how dreadfully lonely each day must be for her. Other than looking forward to those few visits, the only other thing she can do each day is watch TV or movies, or read books or magazines - all so passive. In the short time I have known her, I can see that she not only has to deal with the physical aspect of her condition. The emotional rollercoaster she must be on doesn't bear thinking about. Most of the time she is amazingly upbeat, but already I have seen her at times when she is at a very low ebb.

Since she has been moved to the rehab section of the hospital, she has been allowed to have a mobile phone on - so sending text messages has given her some small 2-way communication with some, particularly her daughter. But basically that is it for communication.. and it's not enough. Even I am frustrated because there is only so much I can talk about with her via text message.

I take my internet access at home for granted these days, and I have used it for some years now as a window to the world. When my husband was working overseas for long periods, it was a sanity saver... for not only could I communicate with him via email and instant messaging, but I have made new friends all over the world through bulletin boards, and, more recently, blogging. It struck me that, as a communication medium that didn't require voice, having internet access might given Donna another dimension to her day. If nothing else, a daily email or 'chat' with a few friends, would give her some more social interaction.

I have liaised with one of the Occupational Therapists at the hospital, and she is very much behind the idea. We did look into the chances of broadband access via the hospital, and as I expected, it is not possible for patients. Bureaucratically, the OT's hands are tied, so it is something that we'd have to make happen ourselves. As you can imagine, there's not a lot of wireless internet access you could afford on a disability pension.

She would be allowed to have mobile access - via the Next G network I gather. And so this is where Telstra comes in...

What could be done for her?

She has use of a laptop, courtesy of Technical Aid for the Disabled, but other than that it is running Windows Me, I'm not yet sure of all its specs. Once I find out what is possible, and what is needed, I know my husband can check that out for me, and also help with installation etc.

I am determined to find some way of getting the internet for Donna. (For once in my very fortunate life I would like to make something good happen for someone else.) I will seek financial assistance from any community organisations that I can, and fundraise if I have to.

Other than advising me of the technical necessities and appropriate plans, is there anything that Telstra can do to help?

Thanking you for your time... I hope to hear from you...

Tracey S.........


Oh Trace, that would make so much difference to her, I am sure. Imagine the freedom being able to IM would give her (not to mention the blog outlet she could use!)

I really, really hope that Telstra could help - how about cc'ing it to your local member as well, so there is a little leverage involved?
awesome idea!
We really do take our ability to communicate for granted. It must be so incredibly frustrating and agonising not to be able to say what you want to, when you want to.
I really hope Telstra (or another company) comes through. Maybe a CC to the local paper (with Donna and her family's permission) would help, too? Surely Telstra would be up for some good publicity, especially if it makes them appear helpful.
Just found your blog, I'll be back :)
I hope that Telstra gives you a quick response.
You are so amazing! I so rarely truly understand what other people might need or want. Your empathy just puts me to shame. Good luck with Telstra!!
Good luck with this Tracey. And maybe copying in your local newspaper might help?
Sorry - I see someone else already had that idea!
I too have a really disabled friend, she lives in a nursing home, and at times finds it very difficult being a younger person (she's about twenty years younger than me) in a place full of geriatric people, many of whom suffer from dementia.
Her communication is a huge problem, and she finds the computer the main link with the outside world. With it she has been able to write a couple of (published) books... she is slow but has worked out ways of using the keyboard, and sends newsletters to her friends. She has a wicked sense of humour! I'm not sure how she funds the internet access, it might be available at the place where she is living. I'm sure that you'll find a way to help her, once the bit is between your teeth Tracey, I'm sure that nothing will stop you!
Surprise surprise, I haven't heard anything back from Telstra yet.
The family need to save the local member (and media) stuff for if Donna gets to move home - you can imagine the financial support and nursing care services she'd need then. And moving home is her ultimate goal. "Living" in the hospital is wearing her down bit by bit.... Some of the medical support she is getting in there is not ... ideal... let's just say....
Try Optus as well Tracey, they have Wireless available and it uses a similar or same network (I think).
I hope you hear back from them. You're doing a good thing. x

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