Between loneliness and community: in New York I found a piece of identity

I just made my dream of going to New York come true. I left Lisbon on my feet: recovered from surgery where I fractured my femurs, in the aftermath of a family crisis and alongside a lot of work. For months, my personal development took a backseat – I had to take care of my body, my parents and a company. Loneliness grew as much as my ability to survive.

I went with the urgency to live, immersed in questioning about isolation, love and the sense of community. I brought back clairvoyance, added questions and a piece of identity. Elaborating is not possible without telling the story of the trip.

Traveling with a disability is complex and expensive. When I thought about going in July 2023, Sérgio – my best friend – had been accepted for an internship in New York and could not provide me with assistance 24 hours a day. Ana, the best friend that music gave me, said she would go with me. I made and remade the plans until I realized the need for a third person, who would cover the expenses. I asked my personal assistant, Anderson, but he has Brazilian nationality and the embassy did not issue a tourist visa. My father got on board with me.

The father-son dynamic has strict lines of independence but it was the only solution and he knew how to give space to my individuality. I lived 8 of the best days of my life. I managed to leave the surgery and the family drama behind, I had dinner alone with Sérgio and put my finger on exposed wounds. I also enjoyed the illusion of living Sex and the City with Ana – somewhere between Central Park and the Plaza Hotel.

New York, cruel and asymmetrical, was, for me, a revelation: diversity there is not a concept, it is rather a reality. I had never seen so many people with disabilities on the street, on public transport, in museums or at shows. There, we are visible, both enjoying the public space and working. Simply living.

I found myself exposed to a distant reality and this brings me back to the biggest question I have asked about disability in recent months: what is our capacity for emancipation?

We are educated for autonomy, but in disability it exists in balance. Now, let’s see. Our bodies do not develop in the same way, I am one meter and thirty centimeters tall. I haven’t conquered the space given to privacy at the same rate as, for example, my sister – I need support to transfer from my wheelchair to the shower or bed. This creates a gap, an us and them. It empties us of belonging and gives us two options: resign ourselves to the absence of individuality or create new definitions of independence.

Surrendered to existential conflicts, we are stratified. When reading this text, you may isolate me in the community of people with disabilities, but my identity is intersectional: I have color, gender, creed, sexual orientation, country of origin and disability.

Intersectionality lets me dream bigger. In New York, visiting the Stonewall Inn was essential for my sense of belonging. It was in that bar, in 1969, that he resisted police forces for the first time because he loved someone of the same gender or because he was trans. Fifty years of systemic struggle have passed, the AIDS epidemic has been fought, the flag of pride has been raised and a true culture has been created.

This shows that forming a community requires time, sharing, intimacy and love. Having a community is different from having a family. Love is consummated in another way: it can be both fleeting and eternal. The family is not chosen, the community is built. I had never seen such plural communities as in New York.

In the Portuguese reality, people with disabilities continue to be assimilated by traditional values. We know that the average life expectancy is shorter, but we insist on spending time looking for cures. I have a chronic, incurable disease, and my only desire is to have a quality of life – with my family and community. One does not cancel out the other, they enhance each other.

When interacting with different communities, I look at us, people with disabilities in Portugal, and I notice a loneliness that is not healthy. I see us too often alone at cultural events, unable to go out at night or unable to enter a restaurant. Another recurring option is to be with our personal assistants, our parents or the guardians of the institutions in which we live.

But where are the friends and romantic relationships?

I believe that personal assistance can be the first step towards finding this part of our identity. My assistant takes me to social gatherings dozens of times – that was, in fact, the first reason I hired him. I don’t question where I’m going and why I’m going, something I can rarely avoid with my parents. This freedom brought me a new way of looking at individuality, leading me to the community.

I am privileged in the resources and medical support I had. They didn’t tell me I would be incapable, but they also didn’t say I would be capable. Meritocracy does not exist: we all start from different places and our arrival is conditional. My place is different from my friends without disabilities, they get on and off a plane to New York without being picked up.

These statements cannot place me above or below anyone. We need to know how to identify causes, destroy the superiority between categorizations – creed, gender, skin color, sexual orientation, disability, nationality. The categorization survives through the economic majority. We are letting causes develop at the pace of capitalism.

If my education had not allowed me access to English, perhaps I would never have developed such a great taste for North American culture and I would not have gone the extra mile to go to New York. If the Portuguese State had not provided me with personal assistance, I would also not realize, today, that I need to continue exploring my personal relationships.

This is acquired through exposure, access and boldness. With disappointments and achievements. With a full or broken heart. In a process of trial and error to find what, and who, gives us pleasure. At work, at leisure, in sexuality. This is how tastes and opinions are developed and the best decisions are made about who we want to be.

The truth is that, in the midst of all this, the right to individuality for people with disabilities remains to be achieved. Our personal space is permanently invaded. When we stand on our own two feet, the achievement is tremendous. It’s what I celebrate most nowadays. However, the more I achieve, the more I realize that I want to share my life with others.

In this anguish, I found myself asking: where do our lives end? If I try to draw a parallel with the most impactful death in my family, I think of my maternal grandmother, who lived in our house until she died. It is true that many people end up living in homes, but the risk of institutionalization of people with disabilities is even higher. We have fewer partners, fewer children, less physical autonomy. There are thousands of institutionalized disabled people.

And yes, I’m also afraid of ending up in a home where they might not know how to take care of me. Where the concept of self-determination is not a reality.

I dream of a different society – that’s the reason I get out of bed. In New York I glimpsed another piece of my identity: I want both space for individuality and for exposing my vulnerability to other people. Without fear of pain, illness and imperfections. I need to continue my path with people who confront me with differences, who are references for new models of existence and, above all, capable of empathy.

I, like all of us, deserve and want to be loved.


Francesco Giganti

Journalist, social media, blogger and pop culture obsessive in newshubpro

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