Massimo Lorusso is an Italian author based in Milan. He has been writing since 1993 and has lived with tetraplegia since a dive into the sea in Rimini in 1988. In this personal story, he explores how needing support with everyday tasks can affect autonomy, and why receiving assistance should never mean losing the right to make decisions about your own life.
A person can help move my body without having the right to direct my life. That distinction has taken me nearly four decades to understand.
I was 17 when a dive into the sea in Rimini, Italy, in August 1988 caused a cervical spinal cord injury and left me with tetraplegia.
Suddenly, I needed help with things I had never thought about before:
eating, drinking, washing, dressing, transferring, changing position
and many other physical tasks. At first, I believed that dependence itself was the loss.
What I learnt later was more complicated. The real danger begins when
physical dependence is treated as permission for other people or
systems to make decisions that still belong to you.
The decisions nobody notices until they are gone
For many years I lived between hospitals and residential care
settings. Some people who supported me were exceptional. They
understood that assistance should help me live my life, not replace
it.
But institutional routines can also become powerful without anyone
intending harm.
What time do you get up? When can you go outside? Who helps you? How
long can you stay out? When do you return? When can you see someone?
What happens if your plans change?
To someone who can simply get out of bed, pick up their keys, and
leave, these questions may sound trivial.
When another person is needed for almost every physical stage of the
process, they are not trivial at all. They are the structure of freedom.
This is why I no longer define autonomy as doing everything by myself.
If I used that definition, I could never be autonomous.
For me, autonomy means remaining involved in the decisions that shape
my day, even when I need another person to make those decisions
physically possible.
Read: 22 Years Of Life In Isolation: The Barriers Facing A Disabled Man In Central Asia
Moving home did not make me less disabled
In January 2019, after around 15 years spent between hospitals and
care facilities, I left residential care and began living at home with
Sonia, my wife.
Nothing miraculous happened to my body when I crossed the threshold. I still needed substantial assistance. What changed was the relationship between assistance and the rest of my life.
At home, care was part of the day. It was not the entire architecture
of the day.
We could decide to have friends over. We could change a plan. We could
spend an evening doing very little. We could argue, laugh, work,
receive visitors, make plans for a journey or simply have dinner
together. These are ordinary things, and that is exactly the point.
Disabled people are often discussed through extraordinary language:
courage, resilience, inspiration, overcoming.
I understand why people reach for those words. But sometimes what
matters most is the right to an ordinary life.
I do not want every cup of coffee, train journey or evening with my
wife to become evidence that I have “overcome” disability. Sometimes a cup of coffee is just a cup of coffee.
Read: Wheelchair User Finally Moves Into Alternative Accessible Flat After Year-Long Eviction Battle
Willpower cannot remove a staircase
There is another idea I have never found useful: if you want something
badly enough, you will find a way. Wanting and being able are different things.
I can want to enter a building, but if the entrance is only stairs, my
determination cannot turn them into a ramp.
I can want to travel, but motivation cannot make an inaccessible train
accessible or guarantee the assistance needed at the station.
I can want to live at home, but that choice is not meaningful if the
support required to live there does not exist. In those moments, the problem is not a lack of positive thinking.
The power to remove the barrier may belong to a transport provider, a
local authority, a building owner, a health service or another
organisation.
Personal responsibility matters, but it only makes sense inside the genuinely available choices. That is why the word “choose” has become important to me.
I did not choose what happened in Rimini. People do not choose many
illnesses, bereavements, accidents or actions of others.
Choice begins where control really exists: whether to ask for help,
whether to explore another route, whether to try again, and sometimes
where to direct your thoughts after the first impact of something
painful.
There have also been times when I have been frightened, angry or
discouraged. I have cried. I have experienced loss in my family. I do
not believe those moments should be edited out to make a cleaner story
about resilience. They are part of the story too.
Read: Book Review: My Unexpected Life: Finding Balance Beyond My Diagnosis By Jennifer Gasner
Technology can assist without taking authorship
Writing has given me another way to understand the difference between
assistance and control.
I have been writing since 1993. Because of my physical limitations, I
now use voice dictation and digital tools to put my words on a screen
and manage text. Those tools are essential to me.
But they do not remember my childhood. They do not know what it felt
like to become a father. They do not decide which memories matter or
what conclusion I draw from an experience.
They give me access to the page. They do not become the author. I think good human support should work according to the same principle.
Assistance can make an action possible without taking ownership of the
decision behind it.
Read: Championing Digital Inclusion: The Story Behind GAAD With Jennison Asuncion
Disability entered my life. It did not replace it
When I wrote my autobiography, I deliberately chose not to begin with the spinal cord injury.
The story starts before I was born, with my parents moving from
southern Italy to Milan and building a family of eight children with
very little money. It includes my mother’s cooking, my father’s work,
crowded rooms, family relationships, poverty, love and sacrifice.
Then comes my own life: fatherhood, the dive, the search for my
daughter Sara, my brothers and sisters, bereavement, meeting Sonia,
marriage and the illnesses that later affected my parents.
The injury is important because it changed the direction of my life. But it is not my whole identity, and it does not explain everything that came afterwards.
That is also what I wish more people understood about extensive support needs. A person may need help with the most intimate physical tasks and still
have preferences, ambitions, responsibilities, relationships, humour,
contradictions and the right to change their mind.
Support should not make those things smaller. At its best, support creates more room for them.
After almost 38 years of physical dependence, I do not ask whether I
can do everything alone. I ask a different question: When a real choice exists, am I still the person allowed to make it? For me, that is where autonomy begins.
Have you experienced situations where support has helped you maintain your autonomy, or where it has felt like your choices were being taken away? We would love to hear your experiences in the comments box, on social media or contact us to share your personal story.