January 25, 2014 Leave a comment
This blog has now moved home… you can now see it over at www.overington.geek.nz
Random musings about Social Media, IT and geek-hood
May 6, 2013 Leave a comment
4 Days. 3 pre-conference workshops. 3 keynote presentations. 90 concurrent sessions. 3431 Tweets. 250+ participants.
No wonder everyone is exhausted! We have laughed. We have cried. Sometimes we have done both. But damn we connected well.
Sitting back now and reflecting on the week there were a couple of themes that kept coming through for me. Bear with me whilst I highlight them.
We need to work together. This was phrased in a number of different ways across the sessions. Dr Sarah Blackstone’s call to action was for us all to get a seat at the table. Several sessions said successful AAC outcomes are the result of a team of specialists coming together. That includes IT + OT + SP. Personal ego’s and agendas need to be left at the door and we need to work together to define and deliver solutions that restore the basic human rights that are taken away when we deny someone the opportunity to communicate. And we definitely need to keep the information sharing going.
We need to demand that communication is on the agenda. Not just paid lip-service, actually on the agenda across ALL levels of organisations, from the Board down. All the other projects and processes and procedures mean nothing unless people can effectively communicate and have their voices heard. Yes/No options just don’t cut it any more. And we need to demand authentic communication acts that are appropriate. There was one session (and I must apologies I cant recall which, maybe Sheridan Forsters) where an example was given of a care worker standing 3 feet away from a deafblind and saying hello, and thinking that was good communication. News Flash. IT ISN’T!
We need to celebrate successes. So many brilliant stories came out during the conference. We need to tell them more. We need to inspire others to strive for what they want, not accept what society tells them they can achieve. We need more people like Melinda to mentor and be a role model for the children coming through. We need to hold people like Melinda and Georgia and Darryl up so they can say ‘See, we can do it. We can have a valued role in society. So can you’ – that may come across as sounding patronising, it certainly isnt intended to be.
Model, model, model. We need to constantly reinforce the practises and communication acts that we are teaching. We can’t just give up because it is ‘too hard’ or because the person we are supporting isnt picking it up at the pace we want. It isnt about us. It’s about them. We do things at their pace. In the way that they can understand. In their language, using their AAC. And we keep doing it in a respectful way that respects their dignity. Period.
Communication Access for All. This again was highlighted in numerous sessions. It needs to be made a priority from central government down. Without access for everyone we are depriving people of basic human rights, not to mention breaching the UN Convention on the Rights of Persons with Disabilities. I think the work that Scope Victoria is doing with the Communication Access symbol is revolutionary and needs to have the full support and backing of government to make it a priority and enshrine it in legislation. I am so excited about it I have put it onto my to-do list of action points from the conference.
I am humbled to have the privilege of returning to my organisation to share the knowledge gained over the last week. NZ Maori have a concept of the baskets of knowledge. In our cultural room we have them hanging up waiting to receive more knowledge and to share the knowledge already gained. I think we need bigger baskets now.
May 5, 2013 1 Comment
Welcome to the third & final day of AGOSCI2013, the culmination of an intense few days. It was therefore fitting to have the final keynote of the conference be delivered by the inspirational Melinda Smith looking at mentors. I think everyone was held spell-bound as she described her journey as both a mentor and a mentee and the intrinsic value it delivers. Mel exquisitely explained how without a mentor everything is hypothetical – in other words it is all well and good an able-bodied ‘carer’ (and I really detest that word) saying you can achieve your dreams but coming from someone that has faced the same challenges in life and overcome them it suddenly becomes real. One of my favourite quotes from this session was ‘Mentoring is not consulting – mentoring is mutual self development’
After morning tea I sat in on a rather interesting discussion held by Sue Balandin from Victoria Uni in Wellington (via a bunch of other places) looking at confidentiality. Valid points were raised about how technology can create challenges to protecting information; one of the examples given was the use of Twitter at conferences to share content. Kind of ironic given the work of the #TwitterArmy at this gathering! The technique of disguising data in qualitative studies was also discussed, and how a balance needs to be reached between satisfying academic requirements and adequately hiding the research participants. Unfortunately AAC research means there is a relatively small pool of possible participants and it only takes a couple of data points to identify them. I do question though whether a bigger risk is the storage of the raw research data on insecure laptops and removable media – I am willing to bet no researcher actually encrypts their data at any stage.
2 quick sessions before lunch with the crazy ladies from Spectronics. Amanda Hartmann gave a really good run through of the new features in Proloquo2Go version 3 that has just been released. Key things for me is the ability to introduce emotion into speech and instant posting from the text window to Twitter & Facebook – no more copy & paste! Naturally the Aussies were excited about the 4 new Australian voices, not high on my list though. Cha Cullen completed the double act with an overview of Boardmaker Studio. New product to me, but one I will be investigating further. Looks as though there may be some new opportunities there to help some of our users.
More good conversations over lunch, like most conferences half the value is in the side chats in the breaks. I do regret not having more time to catch up with a few other people, but I will track them down later.
Into the home stretch starting with a Plain English session with Harmony Turnbull. Based on continuous feedback from colleagues I think I will need to sit through her training to write better material. Looking forward to getting the softcopy of the checklist they have developed to assist the process.
More learning in the penultimate session about the work Scope are doing around the communication access symbol – I have a lot of information about it to share in New Zealand. I really think this has merit and it would be good to see us take a proactive lead (with Australia) in the implementation of it.
And finally the Closing Ceremony. I spent part of it wondering where the past 4 days had gone, then thanks to the on-screen poetry from Georgia Cranko I remembered! So good to see a number of people honoured for their contributions as they stepped down from various roles, their replacements have BIG shoes to fill… no pressure!
Spent my last evening in town with some of my new friends, and some of my old friends having a quiet dinner to unwind after what was a full-on week. I really didn’t want to leave this morning, seems there are so many more conversations I want to have. No make that NEED to have. I bounced back into the house this afternoon and my poor wife couldn’t shut me up, no idea if I was being coherant or not. Was just so much to share (she is in the disability sector too conveniently!)
A few people asked how Harmony & I tweeted our own presentation – I will document the steps and what not tomorrow hopefully so you can all share in the joy 🙂
May 4, 2013 2 Comments
What an amazing week. There will be a daily round-up post coming out later tonight followed by some musing from the whole event but first I need to thank everyone for making the conference such an inspirational time. I reflected over lunch about how yes it is tiring and exhausting but at the same time we draw on the combined energy in the rooms and somehow feel uplifted and inspired to go back to daily life refreshed and ready to continue the journey towards true inclusion for all members in society.
Back home we have a Maori proverb that reminds us why we do what we do
He aha te mea nui o te ao?
He tangata! He tangata! He tangata!
What is the most important thing in the world?
It is people! It is people! It is people!
There are so many wonderful wonderful people I have met for the first time this week, or have reconnected with IRL – you are all very special people playing a very special role in society. Its a role that is often mis-understood, marginalised or ignored, much like the people we work with daily yet somehow we all get up each morning ready to stand shoulder to shoulder and carry on doing what we do best. There are however a couple of people that I want to name & shame that have made a big impact on me this week.
Firstly, the #TwitterArmy as a whole. You guys ROCK! I don’t think the conference would have been anywhere as great without your combined efforts to share the knowledge, poke each other in jest or offer a supportive message. Thank you thank you thank you.
Emily Wailes, Georgia Cranko, Emma Green, Sheridan Forster, Melinda Smith, Jane Farrell – somehow I am going to fit you all in my suitcase and take you home with me. Your presentations, energy, passion and very presence moved me. You all have such great stories that need to be shared across both of our countries if not further afield. And if I cant get you to me in person then I will find a way to spread your messages in other mediums! (not to say others weren’t good.. but you know I am allowed to have my favorites!)
As I tweeted this afternoon, we need to keep the momentum, the sharing of ideas and news flowing. But in the meantime, thank you all. Safe travels back to your family and loved ones.
Roll on #AGOSCI2015 in Brisbane!
May 4, 2013 Leave a comment
Friday seemed a little flatter than the other two days to me. That may be due to 3 hours sleep on my behalf, or more likely because the first full day was really, really full and intense (but in a good way). So it was great to have Susan Balandin up as the days keynote presenter talking about Virtual Worlds, in particular Second Life by Linden Labs. It was a bit of a trip back in time for me – I remember creating an avatar when they first went live in public beta back in 2002, back in the bad old days of dial up internet!
On a more serious note though she describe the research she has done around using SL with people with a disability. This is something that has some merit I think, top of mind positive social interaction learning can be done to support a person with ASD to learn some important skills in a safe environment. Because you can be anyone you like, others you interact with will only see what you portray, the unfortunate human nature of judging someone based on their disability isnt a factor in a virtual world.
After a rather subdued morning tea, and cup of coffee number 10, I sat in on Pammi Raghavendra and Emma Grace talking about increasing the social participation of young people with CCN using strategies to support internet social networking. Research indicates that adolescence is a time of significant change, and peer relations are one of the most significant factors affecting Quality of Life. Sadly those with a disability have reduced social networks – you could then argue a lower Quality of Life. Their study showed that an increase in supported access to online social networks decreased their feeling of loneliness. Why then do we persist in actively blocking someone with a disability from the Internet! Support them, aid them, but for Gods sake let them loose! It is a NORMAL activity for them to do.
One big takeaway, and a message that has been banged out time & again both in sessions and in breaks – to help AAC be a success you need to have a team approach. That is IT + OT + SP working together, as a team. We all need to sit together, as equals with no hidden agendas, parking the egos at the door, and formulate the best possible solution to create a positive outcome.
The next session from Nitha Ungsuprasert was for me was a reminder how far countries like New Zealand and Australia have come with AAC and AT. Lots of research, not a lot for me to take away, other than Thai doctors still prescribe hyperbaric chambers for kids with ASD as a CURE! That is once they have waited to see if they will ‘grow out of it’. Really. So it is heartening to hear how Nitha and her colleagues are trying to bring AAC to the forefront in Thailand and provide the services that are almost taken for granted here. Here’s hoping the support will grow for them over the next little while.
Onto the last session before lunch with Trina Phuah & David Harraway. All I can say is the room is cursed! Technical fails plagued the start of the session but despite this they still pulled of a really fun & interesting hour, including a spot of audience participation with switches to send a tweet and post a facebook update. What can I say, those two are dedicated and full of energy, always a pleasure to hang out with them!
The afternoon sessions. Sheridan Forster is another person I need to smuggle home with me! Super Super presso talking about HOP, or Hanging Out Program for adults with severe ID in a day service setting. SO many applications for my organisation, I think I was so engrossed I forgot to tweet updates! Not going to regurgitate her session here, but I will urge you to read her booklet (her toilet book I believe she called it as it is perfect for casual reading in the little room!) available here for download.
So, lucky last one I will mention for today. Despite best efforts to deter people from sitting in on the presentation that Harmony & I did on Communities of Practise, it seemed as though most of the #TwitterArmy turned up in support! We had the same tech gremlins that plagued Trina & David to start, but managed to bang out a semi-informative session – including live-tweeting ourselves. Yes we really are THAT awesome 🙂 All jokes aside though, it was really great to have the support of the crew in there with us, you rock!
A final note for the day. I was pondering earlier about all the dedicated people in Sydney this week for AGOSCI2013. All these people with the most wonderful values, all striving to make the lives of people with disabilities ‘normal’. It then occurred to me that I know more people in the disability sector in Australia than I do in little old NZ! Just an interesting observation. But I do really value each & every interaction I have with you all, it is so inspiring and energising to talk to people that hold fast to the ideal that there is a better way, and we will walk the long and often lonely path together.
May 3, 2013 Leave a comment
So onto the second part of yesterday, well in reality the only other session I attended but didn’t mention in Part One. And it is quite fitting I think that the session I am about to discuss has its own posting. You see, for me at least, it is the session of the conference. At least it is now. Emily Wailes presentation was entitles ‘Adapt to Connect’: The role of the communication partner. I have to be honest and say for the first half an hour I was seriously pondering my choice in sessions as it was very much the statistical report on the research Emily conducted. Yawn.
But then the second half. WOW! And I use that word deliberately as she had a Big Mac button programmed to say WOW! See it turned from dare I say boring research stats to the real world. And it was disturbing yet not totally unexpected. Her research with people with an Intellectual Disability really hit home as I could draw immediate links to a large number of the people my organisation supports.Emily tried I think to present the findings in as positive way as possible by saying 65% of support workers use an appropriate communication act that matches the communication needs of the person. All I heard was 35% are abusive of peoples rights and needs and it cannot be permitted to go on. But then it got worse, with data suggesting only 19.5% of staff use an appropriate visual or tactile act! 19.5%!
But the least surprising bit of research showed that the greater the complexity of the communications needs of the person the less likely there will be a good match. People with a profound ID need tangible cues to make informed choices, but they are only used in a quarter of the engagements therefore an informed choice is unlikely – if that isnt clear cut abuse I dont know what is.
Emily reinforced for the audience that AAC isnt JUST about a bit of hardware or software, it needs to include friends, family, interpreters and advocates. By this stage, to steal my new favorite expression from fellow Tweeter Kate Munro, I got my #rantypants on! Communication is a basic human need that is often forgotton or overlooked. It was so refreshing to hear Emily state that it needs to be on everyones agenda, all of the time. It needs to sit at the top of a house meeting, a service delivery meeting, a management meeting and definately at a Board meeting. If we leave it up to the ‘experts’ and to the SLTs/SPs only nothing meaningful will change.
Sarah Blackstone spoke in the opening keynote about everyone needing to pull up a chair at the table – we need to make it a priority.
Thank you Emily for your thought-provoking, timely presentation. I lost sleep last night, not just because of your content, but because it really pulled together the other themes in earlier and later sessions. It concerns me that there is this widespread gap not just in New Zealand and Australia but I would say globally that needs fixing. Fixing to give those that need a bit of help the help they need. Fixing to restore basic human rights, respect and dignity. I certainly do not profess to having the answers or solutions, but it is clear from the inspirational group of people attending the conference that there is focus, drive and a real desire to work together, across borders, across professions to make a change.