"....... for he knows how we are formed, he remembers that we are dust" Psalm 103:14

A bit of technology and a lot of determination

Photo by Alexander Andrews on Unsplash

Late this month I'm attending an international conference in my specialist field, but I don't actually have to go internationally. It's the first time the conference has been held in Australia, so it's too good an opportunity to pass up. My husband is coming along too, and will spend his time maximising the opportunity to attend some lectures at a college nearby, in his own specialist field. All in all, it's shaping up to be a great week for both of us.

A presentation not to be missed
Not only that, but one of my clients will be attending the conference too, and in fact will be presenting for the first time in front of a large professional audience. He's still in his teens, so he's super-excited about his first foray into public speaking, and will be presenting on what life looks like for him, as a person with extraordinary abilities but lots of physical challenges.

His presentation is far from perfect, but he has much to say that, if people are willing to listen, could make the lives of others a little less challenging and a lot more fulfilling. My job, as it's been all along, is to encourage and support him. My nature is to want to tweak and tweak his presentation until it's schmick. But then that would make it my presentation, and not his. I'm learning to keep my hands off, make some gentle suggestions, and then leave it to him to decide on the final content. It's NOT about me! 

More than the usual challenges
It's been a long, slow journey for him, getting to the point of being ready to present at this conference. Everything takes so much more time for him than for others who are more able-bodied. Perhaps it would help to think Stephen Hawking.

Firstly, this young man uses a powered wheelchair for mobility, and a switch to control all his technology. The switch is mounted on the headrest of his wheelchair, and by activating it with his head he can drive his chair, use his communication device to speak his amazing ideas, and connect to the world using his mobile phone. Just one switch to do all of that. It's pretty amazing stuff (and we hope the airline will protect everything well, because all it will take is for one critical component to get damaged in transit, and it will be all over red rover.............)

Secondly, while it may sound simple to use a switch for control of technology, there's a lot more to it than you might think. He likes to mess with people who ask him if he's controlling it all via his brain. His first response is always "yes" just to see the looks on their faces, but the reality is that he has to scan through a vast array of presented "cells" to select (with his switch) the ones that do, or say, or activate just the right option. He can scan at a fast rate, but it still often takes him several minutes just to compose one sentence.

Technology isn't the be all to end all
While all this technology certainly affords him more independence and control than he's ever known before, sometimes it's still just not enough. And that frustrating timing component can be critical. Never more so than last year when this young man suddenly found himself needing to contact emergency services in the middle of the night. At the time he had no phone, so he did the only thing he could do, which was to try to raise someone on Facebook messenger. It took way too long.

Something I take for granted every day - the capacity to grab my phone and dial 000 - was out of reach for him. I can't even imagine how he must have felt, to be so helpless to do what he knew needed to be done.

A little perspective
Obviously this young man is no stranger to challenges and struggles, but his resilience has always inspired those who know him and have worked with him over the years. Not only that, but he has a wonderful sense of humour that draws others into his world. This is a young man with dreams and goals. He has much to say, and the means to say it, if he's just given the time and the opportunity.

I find it's always a helpful reality check to think about life from the perspective of someone with as many challenges, but as much determination, as this young man.

I'm really looking forward to witnessing his conference presentation and cheering him on.

1 comment

  1. It would be such a struggle to have difficulties with communication and I do find it sad that there are people who have such extraordinary challenges to overcome in this regard. I admire people like you who can help. Hope the conference is as good as you are anticipating it to be :-). xox

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