My mother once told me I'm like a racing bike that, every morning, bravely and determinedly merges onto the highway. I'm 32 years old, I have a job, and I've achieved a lot of independence. I have many passions and interests, even though I don't have friends to share them with, and I have a very curious mind. My mother has always supported me. She believed in me, encouraging me to understand things, ask questions, take interest, dig deeper, search... Basically, she's always kept me pedaling.
I used to confuse self-determination with independence. Then I understood they aren't the same thing. The concept of self-determination is complex: can someone with an intellectual disability, or a disability that involves communication and relational difficulties, still be self-determined? I believe so, but it requires commitment from those who interact with people with disabilities. It requires respect and awareness. It requires always remembering that you're relating to another person who has their own will.
I know it's easier and quicker to step in and decide for someone else. Sometimes people think they're protecting the person, and even the person with a disability might find it more comfortable. But in reality, no one is stopping them from choosing, and to me this risks becoming an act of violence that devalues people and makes them feel excluded and invisible. Self-determination is the freedom to decide, to make your own choices, the right and ability to define and achieve your own goals based on your own values and abilities, autonomously and consciously. As I wrote for the manifesto of the Bergamo Coordination for Inclusion, each of us has autonomy and abilities that must never be denied or underestimated. No one can decide in advance what someone else's limits are, whatever their level of independence or ability. These abilities must be nurtured by every possible means, respecting the other person's pace, and giving them trust. We must not step in paternalistically but instead offer support and promote capabilities. People must be at the center: no decision should be made without their participation and involvement, respecting their abilities. Whether it's choosing a flavor of ice cream, or the type of pizza, which sweater to wear, where to go on vacation, or where and with whom to live, being able to express one's own will is a right that demands to be listened to and respected.
We need to find the right communication and teaching methods to explain the world to people with cognitive disabilities. We need to know how to listen and observe, grasp needs and desires, and promote their participation in society so they can gain knowledge and experience, build self-confidence, develop their own personality, and consciously take responsibility for their own choices and actions. Basically, this is what I discovered is called, in English, empowerment: a growth process aimed at strengthening self-esteem, self-efficacy and self-determination, helping the individual consciously take ownership of their potential, take control of their own life, unlock latent resources, and achieve goals. This applies to both small and big decisions. Without this kind of growth, self-determination is an illusion, just a formal label that risks staying unexpressed because the necessary support to turn freedom of choice into concrete action is missing. How many people are left voiceless simply because no one has the patience or the will to give them the tools they need to have and express their own choices?
I was struck by something said in a documentary on genetics on Rai Scuola. The genes passed down to us give us certain characteristics. I have brown eyes and an extra chromosome that causes an intellectual disability and other difficulties typical of Down syndrome. But genes alone don't determine our path and growth — the environment we live in and the people around us matter too. Basically, DNA is the recipe, but you still need the ingredients and the right conditions. I know that for some things I can be self-determined without anyone's help, without people stepping in for me just because I have Down syndrome and they have their own prejudices. For other things I need help and support, but I'd like to be surrounded by people who believe in me and have the patience to explain, as objectively as possible, what choices are available to me, what options I have, what these choices entail, who help me gain the experiences I need to build the awareness required to make those decisions — and then actually let me make them.
Disability causes a lack of experiences that creates a vicious cycle, because I end up rather isolated, without a network of friendships. My schoolmates followed their own paths, their own careers, started families; our interests diverged and we drifted apart. This means I don't have friends or a community around me with whom to share thoughts, opinions, feelings, with whom to gain experience and discover the world around me. I know I can count on my family, on the educators and volunteers from my associations. I have a few colleagues I've talked with about all sorts of things, who involve me in every kind of conversation, ask me what I think, and get me thinking things through. And that makes me feel loved. I think you've understood that I don't have much experience of life within the community... partly because, when disability is involved, needs common to everyone — like having friends — are immediately labeled as special needs. I don't need services or care programs; I need to be seen, appreciated, and loved, to have experiences like everyone else — go to the movies with friends, go to a restaurant, take a trip, go shopping, go to happy hour... things you take for granted but that, for me, aren't a given.
Sometimes society limits me more than Down syndrome does. For example, I tried contacting associations that work on environmental and wildlife protection, offering to volunteer in any aspect of their work, but my offers went nowhere: after a few kind words, they never got back to me. I'm probably seen more as a problem than as a resource.
This brings to mind the CoorDown campaigns. No Special Needs makes the point that we don't have special needs. Assume That I Can — inspired by my speech at the UN — asks people to look at our potential rather than our limitations. No Decision Without Us calls for a world not designed by the few, for the few, and for us to be involved in decisions that affect us. These are powerful campaigns that apply not only to Down syndrome but to all disabilities. I urge you to look them up and talk about them (the latest one just came out).
Seven years ago, on March 21st, I was at the UN for World Down Syndrome Day, where I spoke about the self-fulfilling prophecy. We are seen only for our disability, and we have no chance to gain experience in the world because others have already decided what our limits are. I'll say it again: leave no one behind. This year's campaign by people with Down syndrome focuses on loneliness: people with disabilities are, in fact, more likely to be lonely than those without. Loneliness is not a choice — it happens when people aren't supported in building and maintaining relationships with others. Being present is not the same as being included. To fight loneliness, we need inclusion: feeling welcomed and valued, being invited to participate, being protected from stigma and stereotypes, having solid relationships and solid support from friends, family, and partners. These are things that can't be solved with a care program, but only through community involvement — that is, everywhere.
I am because we are. My hope is that together we build relationships of respect and trust, for a more welcoming world where we can be resources rather than discards, where we can believe in a possible future. Don't be afraid of disability and difference: don't let yourselves be guided by low expectations and prejudice. Put us to the test — we might surprise you. Not because we become superheroes, but because you give us the tools to grow and take charge of our own lives.
There's a greeting that always moves me when I watch the movie Avatar: the people of Pandora, when they meet, say to one another, «I see you». In Africa, in Zulu, they say sawubona — I see you, I recognize you as one of my own, and I accept you as you are. So, brothers and sisters, to all of you: Sawubona!
(Address given at the CEI conference
