circle with symbolic people around inner circumference

That may seem obvious to some. But it’s true power hit me like a ton of bricks when it popped into my head. More-so as I’ve been hung-up and writing on this openness thing for ages, on many levels, not being able to articulate the importance my gut was feeling about it.

I was reading a post my friend JP Rangaswami wrote titled “When you see a fork in the road, take it“, where he was summarising the book by John Palfrey and Urs Gasser : Born Digital: Understanding the first generation of Digital Natives

In one point in particular, he states:

The issue of the digital divide is also not going to go away. So when we work on these solutions, we need to keep making sure that the inclusiveness is protected, the inclusiveness that is an integral part of the digital native value set.

[emphasis mine]

There’s something inherent in the abundance of a digital world and dawning digital culture that requires, even demands, openness on many fronts. It’s something we who are emerging from a scarce, analog, closed, culture are coming to grips with – or at least will be forced to – sometimes clawing and screaming.

But there’s something about this openness that bodes well for inclusion beyond just the digital world, and largely because of those who are growing up digital as it’s part of them – ingrained in their psyches and in their being.

Abundance demands openness. And openness bring inclusion. Sometimes it just takes a long time … time being an analog concept.

[via: When you see a Fork in the Road, Take it.]

[book: Born Digital: Understanding the first generation of Digital Natives]

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Strangely or not, I tend not to see myself as disabled. Maybe that’s why I tend to focus on sharing more about what I’m doing than who I am or what I think about disability specific things – whatever those are.

It’s possibly also why when I refer to people with a disability I use the term people ‘living’ with disability. After all, tha’s what I’m doing. It’s also the focus I put on the possibilities technology can and does offer to enrich that ‘living’.

Besides which, I’m just a practical sort of guy.

I’m not the best at conveying what I feel either about what runs deep and not most elequant expressing what I really believe.

Sure I’ve had my lucid moments on issues I’m passionate about, which you’ll find within the years of posting here, and on my other blog - like Social Isolation, Co-presence and Barriers. Generally though words get in my way. Thankfully others don’t have the same problem.

Just recently I came across a post by Lauredhel titled “On ambient intimacy and assistive devices” that had me saying “yes, yes, yes; that’s what I wanted to say to so many people so many times”.

In part she writes about being social …

The internet is the virtual watercooler (or coffeehouse, or playgroup, or pub) for people like me, isolated due to disability. And I’m fed up with able-bodied folk slamming electronic community as a meaningless half-life. I’m sick of internet use being constructed as a signifier of a person as a pathetic loser worthy of mockery. And I’m over ignorant pundits reviling the rise in electronic community as The End of the World as We Know It, a one-way highway to the inevitable disengaged, apolitical fragmentation of society.

And in an analogy to physical assistive devices… ”

People who use wheelchairs, for example, use wheelchairs. They get around in them. Wheelchairs are useful, value-neutral objects. People are not “bound” to them; they’re not “condemned” to life in a wheelchair. The use of a wheelchair doesn’t mark a person as either a sinister or pitiable caricature. And above all, people are not synonymous with their wheelchairs. They’re people who use a mobility device, a tool. (emphasis mine)

The internet may be many things, but it is also my social assistive device. And that’s not tragic, or threatening, or worthy of scorn. It just is.”

Do yourself a favour and read the whole thing on her blog “Hoyden About Town”

Thanks Lauredhel. This so underlines why I have felt strongly for nearly 30 years about technology as a tool in general, why I think the connection and openness that a social web enables is important and points to why I keep persisting with the idea that is Lifekludger.

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1. ConnectingUp – Get ConnectED: Weaving A New Social Web for People with Disabilities.
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The post was by Mike Poole who’d used a photo of a drawing Roy Blumenthal had started for me when designing a logo for Lifekludger.

Well I left a comment complimenting Mike’s use of such a great image Roy must’ve done the same and that sent Mike on a hunt – checking out these new connections.

Mike then wrote a blog post, titled “Risk and Redemption“, about us. Nothing unusual really for anyone actively involved with the blogosphere and interested in the real value inherent there – the people.

What stunned me though was the way Mike then turned around and from reading my loose trail of rants then so eloquently and lucidly set about expressing in two paragraphs a great deal of what I’d been trying to say about Lifekludger over the last few years.

I quote his post below:

Dave Wallace’s Lifekludger blog is a lot like that too, although to call it a blog overshadows its power as a kind of electronic thought tablet. Dave uses the term meme, and it seems to be a work in perpetual process. A Kludge, not incidentally, is a workaround, a way of getting by and getting better with limited opportunities. Dave Wallace is interested in what you might call life-hacks, and he brings to bear on them the perspective of a quadriplegic former mechanic who is seeking new tools to shift between contexts, who is exploring the possibilities of social networks in the Cyber Age.

An important point that Dave makes in a post he published late last year is that mindsets are not only limiting, they’re potentially lethal. Resistance to new ideas, particularly to the innovation and change inherent in technology, enhances social isolation, renders it close to compulsory. He discusses the deadening decontextualisation of “people with disability living in ability boxes” – conventional architecture, existing building codes – and his frustration with people who consider computers, those exemplary tools for communication, as little more than toys.

But I’m heartened by Dave Wallace’s insistence that workarounds should be fun as they connect people,

Over the years I’ve sratched out the things burning in my insides about technology and it’s underestimated benefit it can have in the lives of those who most stand to benefit by using it as a tool. But I’ve struggled to get the true idea and vision and motivation for it into a concise, coherent form.

In the process of writing on the blogs, commenting on others posts I’ve connected with many wonderful people. I’ve used the podcast to strengthen the connections by deepening the conversation in voice. And it’s been a wonderful ride of remixed, overlapping creative thought.

All directed and driven by the core things Mike outlines in his paragraphs above.

Thanks Mike

Technorati Tags: connection, network, openness

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I am posting her notes on this breakout session as it highlights some of the key Benefits and Barriers for people living with disability participating in the digital space – some of the very reasons why Lifekludger exists to play a part in overcoming barriers and enriching human lives.

Breakout Session 1

Jenny Kapp, Community Connections Australia – Get ConnectED: Weaving A New Social Web for People with Disabilities.

Benefits for people with disabilities:

Psychological
Improve health outcomes
Improved relationships with family

Barriers
Cost
Availability of assisted technologies
Reactive design of the assistive technologies – behind what’s actually happpening
Inaccessible hardware or software configuration
Lack of awareness of opportunities
Different needs of different people with different disabilities

“Inexperience in managing the complexities of social life has left may people with disabilities to engage with new technologies.” from a study by two Australian researchers. Access is only the first part of the equation.

Jenny is about to pilot a 12 Week Training Program. The program introduces how to use the technology, but also social skills. They will be using Skype, Second Life, Facebook, and MySpace.

Technorati Tags: cu08, beth kanter, network, connecting

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The group of Occupational Therapy students at UNISA I spoke with yesterday about how to use tools to do life with disability. The course title is “Enabling Occupation” Occupation being any activity in this case. I like to simplify that to mean “Helping to do stuff”. Which ain’t a bad definition of what a tool does really.

Over 60 this time, think I broke my previous record of keeping people’s attention for 2 hours. The young, and not so young, now days impress me with their acceptance of people and of openness to new things.

An authentic voice helps, always will, no matter the medium.

Dave

Slides here – Powerpoint

[tags]occupational therapy, students, tools[/tags]

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It kills a person’s hope, kills their spirit, and kills their potential.

I know a little about this phenomenon but thankfully less than a lot in the realm of those people who are living with a disability. I know a lot more about it second hand too; the stories visit me in my home, in my work place and yes even while on the net. And while it certainly isn’t just a problem peculiar to those with a disability, it’s certainly one peculiar to humanity.

Now, if you’ve read my about me page you’ll know I used to be a mechanic before my accident 25 years ago that caused my change in direction (to say the least). As a Mechanic in my former life one thing I know about is tools.

So, now I’ve established I know two things – social isolation and tools – why am I telling you this?

Well, because tools can save us from the effects of social isolation.

The tools we use in this age are increasingly being virtualised and currently being collected in a virtual toolbox which is surfacing as Social Networks.

There are a couple problems I see emerging around use of these tools.

One is that we have these deeply ingrained mindsets. I’ve battled against people and systems with these mindsets too for a while now. In fact I’m battling one about access through the Human rights and Equal Opportunity Commission as I write. There are mindsets in architecture and building codes. Mindsets in employment that put people living with disability in ability-boxes and design support around them that excludes those not conforming to the box. Mindsets in care that don’t see the person in the context of a life. Mindsets of designers that make an environment for people having two legs, good balance and a certain height. Then there’s the mindset I’ve been personally butting heads with for a couple decades – the mindset that computers are just toys, play things. That there’s little real life benefit from having access to technology. They couldn’t be more wrong.

So we come to the second problem. This centres on the terminology we give currently to the ‘network toolbox’ – Social Network. The problem is the label “Social”. In reality it isn’t, or shouldn’t be, a problem. I mean, we are all social beings. We don’t, in fact can’t, exist in a fully functioning state in a social vacuum. And what is it we have in the flesh with the people around us, no mkatter where we are, if it’s not a social network?

It seems that there’s an intersection of these things happening.

We are trying to define a way of using tools in a new and emerging virtual context with a mindset rooted in something we do naturally in the physical world. Often it’s just too limiting.

Part of the issue is just like the battle of getting to see the real life benefits that can come from people living with disability having access to technology. The results are often life changing, not merely life enhancing. And the long term spin offs are phenomenal. But here’s the rub – they aren’t neatly and easily measured like business likes it to be. The benefits are qualitative first and foremost. The measurement needs to be told with stories and examples not numbers and charts.

And this too is the power for technology, to tell and share stories – stories with authentic voices of shared learning, experiences gained, lives changed. This is the potential power of social networks – applied in any context.

However it depends on access and access depends on attitude. Without access there can be no connection and, as I wrote back here about a year ago – Marginalisation occurs when something on the edge is unconnected.

We are social beings who need connection.
Connection happens when stories overlap.
Mindsets further entrench isolation.
Isolation kills.

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Another big group and two hours trying talk loud as I could meant I was buggered aftewards
but very fulfilled.

I changed a few slides and added some more things to the stack this year, with a renewed focus about what therapy, occupational or otherwise, should really be all about – enabling people to connect.

The revised slidestack can be seen here or from under the Lifekludger Popular page. This only serves as a guide and to give direction for me on the day – a lot more is said than appears on the preso. So if anyone wants more details please contact me.

Dave

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III. Advertising is going to die. PR is already dead.

Advertising has a problem. It’s not efficient. …………. But it’s still waste. The day will come when something new will connect demand and supply directly and efficiently. (Maybe Google will do that too… who knows?). Then advertising as we know it will be a goner. I’ve been predicting this for a generation, by the way, so I’m not holding my breath. But trust me. It will happen.

See the bold bit – this is what I want Lifekludger to do for technology for people living with disability.

Have a need (demand – [livers]) – connect to the people able to meet it (supply – [makers/givers])

Connect people who make stuff for fun and need stuff for life!

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In a previous post I mentioned I’d looked at the Haystack idea Chris Carfi is developing.

I created a haystack for Lifekludger and now have put a Link from the sidebar of the Lifekludger blog page.

This will enable you to add yourself to the Lifekludger Haystack. By doing so you you become a ‘Needle’ in the haystack – and the more needles we have the easier it will be to find one!

I guess I see a haystack as a more open ‘LinkedIn’ – kind of more community minded. I think it’s a good way to congregate people around an issue – eg: lifekludger.

Quick Haystack user signup
Joing the Haystack
The Lifekludger Haystack

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Its a new form of mediation that gets older forms out of the way. It’s the shortest distance, for example, betwen users and the people who create what they use.

My ears prick up.

For Lifekludger to be effective it needs to foster social service disintermediation as much as possible.

Traditional services who treat people living with disability as being strictly ‘clients‘ who they can ‘place‘ somewhere, or do something ‘for‘ or ‘to‘ rather than including them ‘in‘ and collaborating ‘with‘ them, need, to put it bluntly, to get out of the way.

Haystack seems a good medium in the arsenal of tools to enable just that.

I’ve created a Haystack for Lifekludger. If anyone has any inkling of interest in what Lifekludger is about, nip over there, sign into Haystack, join the Lifekludger haystack and start finding each other.

Haystack presents as a business tool – but I see it more as a way to align yourself with a cause. I’m keen to see if we can’t leverage it for Non-profit causes.

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While Doc and co’s thoughts are around the Net Neutrality debate, it’s the humanity aspects outlined that perked my interest.

JP says eloquently:

The edge is about people. Control has passed to individuals.

Now I know about the edge, I live there. On the edge, the fringe of society. Maybe not as near as some, maybe further out than others. As a general statement, most people living with disability live there, as do other marginalised groups of individuals.

Marginalisation occurs when something on the edge is unconnected.

This can be seen in the area of housing and disability. Institutions versus community living. It is simply human decentralisation. Where rather than data moved out and siloed, people are. People living in the community without the freedom of connection to the ‘network’ of other human beings living around them become cut off, isolated – marginalised. What should be a clear path is blocked by barriers.

Institutionalisation is not a state of place, but a state of disconnection.

On the fringe you need to be adaptable. My whole life is one of intense adaption – a life-kludge.

That’s essentially why Lifekludger exists, to remove barriers to connection – to connect around the idea that technology is a great way to get people living with disability, even though they may be living on the edge, that they might be connected and not marginalised.

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