My Life Experience + Technology + Bravery = Inclusive Reality #44 #cong23 #reality

Synopsis:

The reality for carers is that decisions are made by others and carer burnout is high. Self-directed care offers a new reality for putting people at the centre of their own lives. It’s complicated and challenging but transformational at individual and community level. Technology has a role to play to enable people to get back to living their best lives.

Total Words

1,025

Reading Time in Minutes

4

Key Takeaways:

  1. Lives are complex
  2. Carers are undervalued and over relied upon.
  3. Self directed supports offers hope.
  4. Bravery is required to make this a reality!

About Karen McCormick:

I am a mammy of 4 kids and married to George. We live in beautiful Inishowen.
I enjoy swimming in the sea as much as I can.
My lived experience of being a working carer has motivated me to now work for myself. I split my time three ways: I am founder of inCharge – enabling better self-directed care; I am lived experience engagement lead at IMPACT, the UK implementation centre for evidence in adult social care; I am a personal assistant employer and I manage my daughters personal budget.

I am looking forward to actually getting to Cong!

Contacting Karen McCormick:

You can reach me on email, LinkedIn  and X

By Karen McCormick

I wrote a submission for last year’s CongRegation and life circumstances deviated me from getting there.

A lovely wedding invitation was the initial detour on my 2022 journey to Cong but on the same morning of the wedding I had a mammogram – 8am, plenty of time to get home and get ready. Odd-looking cell formations showed up and I had a biopsy. So, in effect, I missed most of the wedding ceremony. Those of you who were in Cong last year will know it was on 26 November. This happens to be my mammy’s anniversary having passed away at a young age of 49, the age I am now. A sad reality for me but feeling very much connected to her that day. Every day.

I was sitting in the pub in my hometown in Donegal after the wedding ceremony that I mostly missed, waiting to go to the reception. I was feeling a bit fragile from the unexpected biopsy and my husband was getting me a glass of wine (doctor’s orders). I glanced up and there in the pub in my hometown of Moville was a fingerpost sign for Cong.

I can’t quite take it in, so I sent a pic to my friend Ailish as proof!

Now back to Reality.

The reality for people, like me with caring responsibilities, is life is much harder than it needs to be. Decisions are made by others about people not with people. Carers are burning out. We are on duty 24/7, 365 days a year. We can dress it up however we like but that’s the reality of it!
We decided to change the experience in terms of decision making for our daughter. We opted for a personal budget when she left secondary school rather than tradition disability day services on offer. Our goal was and is to put her at the centre of her own life, empowering her to have as much choice and control as possible.

This decision had big implications for us as a family.

My professional life took at twist.

I was now going down the path of becoming a personal assistant employer – a micro care provider.

The reality of self-directed supports for my daughter? Transformational!

She does regular things in our community supported by people chosen by her and who understand her evolving needs. The community impact is palpable. More inclusive, thoughtful and considerate. More aware.

The reality of me becoming an employer? How hard could it be! There would be lots of support, advice and guidance. This is international best practice after all.

There would be technology solution or system that I could buy? Right?

Wrong!

Lots of bits of solutions and lots of systems for service providers but none for people with care needs and their families. Families like us. So not only was I on the journey to becoming a micro care provider, I was researching to develop person centred technology. An entrepreneur!
I’m not a technologist. However, I have lived experience and a deep understanding of the problem I am working to solve. I naturally connect with empathy to other carers and people with disabilities. I suppose it’s the reality I have known for the 22 years of my daughters life so far. I also know that lives are complex as you will see from my opening paragraph. I have a skill in joining the dots or unpicking the complexity. I can understand it from many perspectives. Ultimately, strip it all back and it’s simple really. People supporting people.

I know that technology is not the panacea to self-directing supports. I do believe that with the right digital tools and supports, people can be less restricted and more free to live their lives as they see fit.

It also gives us the opportunity to store our personal story and care needs in one place, a place that we have access to and can choose who to share our data with. I see this is future proofing for my daughter. Information and data about her care needs, likes and preferences, schedule and people that are important to her. If anything should happen me, then others of our choosing will know what to do and how to approach it.

It’s not rocket science but it is a departure from how we traditionally organise care.

Bravery is needed to break down barriers and rebalance power. Changing the culture of authorities from a traditional systems focus of power and control to person centred approaches will be slow and difficult. It is possible to have a society and structures that see individuals and families as equals and architects of their own lives irrespective of what needs they have. Bravery is also needed from us. Individuals and families need to believe and trust that we can do it for ourselves.

A new inclusive reality.

The Effect of Technology on Society #3 #cong20

Synopsis:

The society we live in is, seemingly, a dynamic and ever-changing entity. It is tempting to say that social structures have a life of their own. But I would argue that the single most identifying characteristic of a society, any society, is inertia. Society, left to its own devices fosters change at a glacial pace. What does move the needle is the effect of technology and the advantages that it brings. As we adapt to innovation the way we relate to each other alters in myriad ways, both socially and politically.

Total Words

1,177

Reading Time in Minutes

5

Key Takeaways:

  1. Technology is the active force in the changing of society.
  2. Society has a great deal of inertia towards change
  3. Because technology is unevenly distributed so is societal change.
  4. We are more than capable to adapting to change

About Tom Murphy

Classics and Philosophy student at NUI Galway.

Contacting Tom Murphy:

You can follow Tom on Twitter

By Tom Murphy

Society is the collectivised version of ourselves. No matter where we live, we are either living in sync or out of sync with the world of people that surrounds us. While we are never truly apart from our social selves, even in the social groupings we find most harmonious, we can also have the sense of a feeling of otherness, of outsider-ness. At times we are so submersed in our social functions that we can find it hard to separate our personal, social functions from our tribal, collective functions.

We are born into our social structures and have no say in the matter. We are ‘thrown’ into this existence as the philosopher, Heidegger, would have put it. But this does not mean society’s standards and mores are immutable. In fact, society is changing at an exponential rate. The world of my children is very different from the world I grew up in. Likewise, the world that I was exposed to was very different from my grandfather’s. However, the world of my grandfather would have been very similar to his own grandfather and the similarity in lifestyle would have gone on back through the generations until feudal times and the advent of the Enlightenment. Before that, to see a similar moment of transition in Irish culture one would have to go back another seven hundred odd years to the arrival of Christianity on our island. And even that was a gradual process, taking some two hundred years to complete.

In contrast to the glacial movement of societal change over the centuries the world around us is now changing its nature at an ever-increasing rate.  Changes in our lifestyle brought about technology and enforced by the current pandemic means that remote working has gone from being a nice notion to an essential means to keeping our society functioning.

This throws up two observations: It is clear that we are a very adaptable species and that change is caused by stimuli external to society. While I will never have the digital adeptness of my children I still manage my electronic and informational world in a manner pretty much to my liking. Like most people, I go with what works for me and leave the rest. I adapt as best I can.

Secondly, The drivers of change in our lifetime have been technological in its essence. As we have seen across the millennia, society, left to its own devices, will barely change at all. It is a conservative (not in the political sense) institution, not budging an inch unless it absolutely has to.

As technology throws up new possibilities and new wealth there is, in consequence, space for new ideas to grow into and from the new opportunities that are thrown up. This activity can inform our political thinking. Marx needed an industrial working class to exist for his own ideas to have any substance. Whatever you may think of Marx, his ideas were born out of the technological advances in industry that were happening during his time on earth.

Societies, like the technologies and ideas that form them, are amoral on their own account. They may judge each other harshly or admire each other wholeheartedly. They may cherry pick each other’s best attributes while remaining separate and distinct from each other. For societies to have survived to this present day suggests a strength in how the human coalition of minds and activities coalesce and operate together to form something greater than the sum of its parts. However, this ongoing symbiosis can be threatened by uneven technological development. This can exacerbate the differences between societies (and within them) leading to unequal development and its consequences.

Individuals are products of their culture and some cultures value the role of the individual more than others. In more individualistic societies the power to make changes rests with the individual. While it is true that individuals can act as the embodiment of society changing ideas they, nevertheless, have to have on board a significant number of other people to have an affect.

This is where we find ourselves in our Western cultures – susceptible to the effects of technological developments, yet clear enough in our own minds that we operate under the assumption that we can be the change we seek.

The sense of personal empowerment that we have is not universal across all societies, everywhere. It is not even fully developed within our own societies. If it were, we would not have instances of racism, classism, sexism, ageism and so on. That inequality exists in our society at all allows for the possibility and potentiality for change. But as I have noted there is a great deal of intrinsic inertia to be overcome. A given society will not change on its own. It has to be given a push. A force of some sort has to be exerted upon it.

However, if we depend on internal change we come very quickly to a point where an unstoppable force, in the need for change, meets an immovable object, societies entrenched traditions.

The resolution for this impasse is to take note of history and the economic drivers of technological innovation. But add to that our very human ability to adapt to circumstances and opportunities, even if they come in the guise of universal pandemics.

Remote working, for those that can do it, (which is far more than was once thought possible,) could be a boon to the planet just in terms of reduced pollution and the saving of our most precious personal resource, time lost in commuting.

Societal change in the modern world is brought about by technological development. As our capabilities change we adapt to the new world that is being shaped, sometimes with vigour, and sometimes by dragging our feet. But adapt and change we must. The society that emerges may not be the one which we envisaged but it will be different from what went before. Hopefully, it will be different in a way that we can all engage with and appreciate.