The Distance a Choice Must Travel
At ENA Care Group, we believe that true independence means having the freedom to make your own choices and live life on your own terms, with the right support around you.
Over the next 2 weeks, we are delighted to share the thought-provoking blogs by our long-standing client, John Clarke, who lives with Cerebral Palsy and brings his own personal experience and perspective to the subject of independence, autonomy and care.
This week, John has written: The Distance a Choice Must Travel: What does independence mean when autonomy depends on care?
We hope you enjoy John's insightful and personal reflections, and we extend our thanks to John for allowing us to use his words.
The Distance a Choice Must Travel
What does independence mean when autonomy depends on care?
I have always lived with a strange dichotomy.
There is my mind, constantly willing me to move, to act, to express myself. And then there is my body.
Cerebral palsy means the two do not always agree.
I simply get on with life.
Still, frustration has a habit of finding me.
The freedom to move towards someone and show physical affection—a hug, a touch, an arm around them—is something many non-disabled people take for granted.
I cannot close that distance myself. The other person has to come to me first.
Even then, a hug can be over in seconds. They may begin moving away while I am still trying to put my arms around them.
I never ask them to stay. The handful of people who understand simply do. Nothing is said. They give me the time, but never make it feel like waiting.
That is emotional intelligence.
Perhaps it is no coincidence that I count them among my closest friends.
The gap between wanting and doing reaches into every part of my life.
Take one of life’s most ordinary acts: getting out of bed.
I may wake early and lie there for two or three hours before my PA wakes and can help me. My mind is already somewhere else. It has opened the curtains, begun the day and perhaps even gone for a run. Physically, I am still in bed.
I have often wondered what it feels like for thought and movement to follow one another without interruption. To wake, decide to get up and do it.
I have known that tug of war for almost as long as I can remember. The pull never entirely disappears, but I cannot let it become the centre of my life.
If I did, there would be no room to enjoy the life I actually lead—and it is immensely rewarding. I use my abilities to their fullest extent.
When people hear that I receive support twenty-four hours a day, they may imagine help is available on demand. In the strictest sense, a PA is always present. But presence is not the same as limitless availability.
Choosing to stay up late may keep my PA awake later too. Expecting them to wake the moment I do the following morning would be neither fair nor realistic. They need proper rest.
The choices remain mine, but acting on them almost always requires another human being. My PAs are not robots; their needs and limits matter too. Every decision carries a second question: not only what I want to do, but when it can reasonably happen.
Robots.
It is a word we often use to describe bad care: a PA who completes the practical tasks but shows little interest in the person in front of them. Yet the possibility of an actual robot caring for me raises more complex questions. Would support from a machine necessarily mean that I was being cared for less?
What is the job of a PA?
Is it to assist me in daily life and enable me to live as I choose? Or should every person who supports me naturally become my friend?
I wrestled with that question for years before realising that I cannot rely on a PA to make my life for me. My world has to extend beyond whoever supports me on a particular day. Friendship can develop, and when it does, I value it deeply. But it cannot be expected from every relationship, nor can my happiness depend upon it.
That understanding is what draws me towards robotic care. The appeal is not a world without people; it is the possibility of acting on a decision without first weighing it against the person beside me.
If I suddenly wanted to visit a friend late at night, the desire itself would be simple. Acting on it would not. Before going anywhere, I would already be considering how my PA’s day had unfolded, what the journey would ask of them and whether my sudden plan was reasonable. Those questions recognise the humanity of the person supporting me. They are also the point at which spontaneity becomes negotiation.
A robot may never talk with me in the way a PA who knows me well can—sharing a joke, noticing a change in my mood or understanding the meaning of a silence. Warmth like that can be the difference between being made to feel like a chore and being treated as a whole person. Yet sixteen years of receiving care have taught me that human presence guarantees neither conversation nor connection. I have known people who barely spoke to me. I learned to adapt to the person in front of me and carry on, however much or little we understood one another.
A robot would not be there to give my life meaning. No PA can do that for me either. Its purpose would be simpler: to help me pursue the friendships, ambitions and choices that are already mine.
If a machine allowed a spontaneous thought to become action, would that really be less caring—or might the freedom itself be a form of care?
