The invisible rise of social handover: 'My body needs help. My decisions don't.'
By Massimo Lorusso
What physical dependence taught me about presumed competence, communication and the right to remain the author of your own life.
There is a small social handover that happens faster than most people realise.
Someone sees my wheelchair, sees the person beside me helping with something practical, and their attention shifts. A question meant for me is directed to the helper. A choice about me is discussed with someone else. Sometimes the tone changes too: slower, softer, more simplified, as though needing physical assistance has quietly become evidence that I also need someone to think for me.
I have lived with tetraplegia since I was seventeen. In 1988, a dive into the sea at Rimini caused a cervical spinal cord injury that changed what my body can do. I need extensive assistance with ordinary physical tasks. Other people's hands are part of my daily life. They may help me get out of bed, wash, dress, transfer, move through places or reach what my body cannot reach on its own.
That is dependence. But it is not the same thing as surrendering authorship.
The distinction sounds simple when written on a page. In real life, it is surprisingly easy for it to disappear.
The difference between doing and deciding
If I need another person to lift a cup, that does not mean they should choose what I drink. If I need someone to help me leave the house, that does not mean they should decide where I go. If a person assists me with a phone, a door, a transfer or a journey, the action may require two bodies, but the decision behind it can still be mine.
For me, autonomy has never meant "doing everything by myself". That definition would make autonomy impossible for many people before the conversation even begins. I understand autonomy as something more precise: being able to express a preference, make a decision, change my mind, say yes, say no, take a risk, make a mistake and have the practical support necessary to turn a decision into an action.
Support can make autonomy possible. It can also, if nobody is careful, replace it.
I learned this especially clearly during the years I spent in hospitals and care settings. I lived for roughly fifteen years in institutions before returning to a home of my own. Institutions are built around schedules because they have to be. Staff work shifts. Meals arrive at set times. Routines keep large systems functioning. None of that is automatically cruel. But a system can be efficient, organised and even well-intentioned while still making a person's choices smaller.
The loss of agency rarely announces itself dramatically. It can happen through repetition: when to get up, when to wash, when to go out, when someone is available, what is practical for the service rather than what matters to the person. Eventually the risk is that the person becomes the object around which care is organised, rather than the author whose life the care is supposed to support.
When communication is mistaken for competence
This is where my experience touches a question I know matters deeply within neurodivergent communities, while not pretending that our experiences are the same. I do not write as a neurodivergent person, and I would not claim to speak for neurodivergent people.
The overlap I recognise is a social habit: people often treat difference in communication, movement or support needs as information about a person's intelligence, judgement or capacity.
When communication takes longer, is mediated by another person, or does not look the way an observer expects, patience can disappear before competence has even been considered. The helper becomes easier to address. The person receiving support becomes easier to talk around.
Presumed competence, to me, is not a sentimental idea. It is a discipline. It means beginning with the assumption that a person is present in their own life. It means asking them first. It means allowing enough time for an answer. It means not confusing the speed of a response with the value of the thought behind it. And it means understanding that support with communication should increase a person's control, not quietly transfer that control to someone else.
Care is a relationship, not a change of ownership
My wife, Sonia, is part of my daily care. We married in 2019. Our marriage includes things many couples never have to plan: assistance, transfers, equipment, schedules, accessibility, the logistics of leaving home and the realities of a body that can suddenly make ordinary plans complicated.
She often performs actions I cannot physically perform. That does not make her the author of my decisions. It makes us two people negotiating a shared life in which care is practical, intimate and sometimes exhausting, but should never erase either person's identity.
There is an important difference between knowing someone well and deciding for them automatically. Love does not make consent unnecessary. Familiarity does not cancel the need to ask. A good carer, partner, support worker or family member can anticipate practical needs while still leaving the decision where it belongs.
That principle matters because dependence can make gratitude complicated. When another person helps you with things you cannot do alone, it can feel harder to disagree. You may worry about being difficult. Systems may reward compliance because compliance is easier to organise. Families can slide from support into substitution without anyone intending harm.
The answer is not to pretend dependence does not exist. Mine is real. I cannot make it disappear with positive thinking, determination or inspirational language. The better question is whether dependence is being organised around the person's will, or whether the person's will is being organised around the convenience of dependence.
Whose decision is being carried out?
I have spent nearly four decades learning that dignity is often hidden inside very ordinary choices. People tend to imagine freedom as something large: travel, work, relationships, where to live. Those things matter. But freedom also lives in smaller places.
What time do I want to get up? Who do I want in the room? Do I want to go out today? Do I want help now, or in ten minutes? Which shirt do I want? Do I want to continue this conversation?
None of these questions becomes trivial because someone needs assistance to carry out the answer.
This is why I resist the idea that independence and dependence are opposites. Human beings are interdependent long before disability enters the conversation. Disability simply makes some forms of that interdependence visible. My body makes my need for other people impossible to disguise. What I ask in return is not the fantasy of needing nobody. It is the right to remain visible inside the support I receive.
I cannot tell neurodivergent readers what supported autonomy feels like for them. I can only offer the lesson my own life has forced me to examine again and again: assistance should expand a person's ability to act on their choices, not become a reason to doubt that the choices are theirs.
The most useful question may be a very simple one: whose decision is being carried out?
If the answer is the person's own, then support can be an instrument of freedom. If the answer has quietly shifted to the helper, the family, the institution or the professional because that is easier, then care may be doing something very different from what it intends.
My body needs help. My life still needs my voice.
About the author
Massimo Lorusso is an Italian author and speaker based in Milan. He has lived with tetraplegia since sustaining a spinal cord injury at seventeen. His work explores autonomy, care, family, dignity and the gap between physical dependence and personal agency. His autobiography, The Voice of Silence, is available in six languages and can be purchased from Amazon.
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