Words are important; they represent the alphabet of our culture. If we want to change our culture then we must start by reflecting on the words that we use and what they reveal about how we think. We need to educate ourselves and others about how changes in language can demolish prejudice, change our mindsets and, as a consequence, our reality.
In the context of changing cultural attitudes to Down syndrome, we have called for an end to using words like “retarded” or “disease” as well as the expression “affected by” - a battle fought for years and that still has not been won. But what about terms like “differently-abled” and “special needs”? The use of these euphemisms to refer to people with disability in many case reflects the best of intentions – parents or professionals trying to find language that is not stigmatizing – and yet, we cannot overlook what is concealed and perpetuated when we use these expressions.
First of all, the fundamental needs of people with Down syndrome are not special, they are regular needs: the need to learn, the need for connection and friendship, the need to work and be valued, the need to love and be loved. This has been recently endorsed by many people with disabilities and advocates in some articles. However, what concerns me the most is the cultural prejudice that lies at the heart of the concept of “special” and the isolation and marginalisation that flow from that prejudice.
In my own experience as a mother, I used the term "special needs" in relation to my daughter Emma from the first day; maybe I needed to get used to having a daughter with Down syndrome, a daughter that I did not expect, and I believed that with this "softer" expression I was sweetening the “stigma” pill and protecting her, but the truth is that I was denying an essential part of the person she is. It seemed to me as if it was less harsh, more sensitive, to call her a “special child”. But I didn’t realise how counter-productive that was: I was avoiding getting to know and accepting her fully and, at the same time, I was keeping her in a protected and exceptionalised mental place that would isolate her and shape her to see herself as separate.
There were various negative consequences. On the one hand, people started to pigeonhole her, on the other hand she developed a kind of presumption and egocentricity, as if being a little girl with disability automatically granted her a distinct status. It took me years to understand I was the first to make things complicated, that calling her "special" would not change her life.
I learnt this from my other children, who complained about my excessive attention, preferential treatment and overprotecting behaviour towards their sibling; who asked themselves what they had to do to get their own "special" trappings. What they perceived was confused and distorted, and it was largely due to my language and to my attitude.
I learnt more from Emma’s schoolmates: they taught me my daughter was Emma, just Emma. I remember one particular day when everything seemed clear and simple to me. That day, they were irritated when they asked me: “Aren’t we special too?”. They petrified me and, after some long minutes of embarrassed silence, I answered: “Of course you are, each one of you, in your own way. I was wrong…until today!”. Emma’s needs were their needs too and they didn’t consider her as someone special or different because she met some of her needs in different ways. They understood her effort, her difficulty in expressing herself, but also her determination, her courage and her spirit. Maybe Emma needed strategies, motivation, confidence, but aren’t these the same things every child needs? Emma required adjustments to learn, a different level of assistance from teachers or schoolmates to meet her needs, but this did not make her desire to learn, to communicate or to relate to her friends “special needs”.
I understood through experience that labelling her “special” from the start prevented anyone from relating to her without the baggage of assumptions and preconceptions that come with that word, from giving her a real chance; expectations were resized, everybody got "compliant" and Emma was more and more imprisoned by the way she was being defined.
During these 12 years, many things have changed, my vocabulary too. I don’t use the word “normal” anymore, I use “typical”; I don’t use the word “special” anymore, I use “disabled”; I don’t use the word “gift” and I don’t consider my daughter as a superheroine; I’m not a “special mother” and my daughter is a girl with Down syndrome who lives her life with the same need to belong as everyone else. Euphemisms are not helpful so let’s call things by their name - disability #saytheword it’s what disability activists ask for. To tell it like it is allows me to look at things without hiding, to face life in a direct way. And it allows Emma to do the same. I feel as if I am respecting my daughter more, as if I am giving her the chance to define her own identity over time, of which disability is part.
As parents we have a great responsibility; people around us do not know how to behave, they are uncomfortable and scared of what they are not familiar with, they look at us parents for guidance and they learn from us. When our child grows up, we want him/her to be treated the same as anyone else: we have to set this expectation first so that others will follow. I believe that there will come a day when we will have, as a society, rejected “special” and all those other terms of "endearment", a day in which we will call our children only by their name, acknowledging their strengths and challenges –not as something that separates them – but merely as characteristics of human diversity.
It is a long way from calling children "special" to accepting them as different and marvelously unique as they are, but that change in mindset is essential and worth it! Offering up "special treatment" and an expectation of “separation” guarantees a result that is the opposite to inclusion. "Inclusion" is not compatible with building a separate "special" world that is tailor-made for people considered different – rather it is to give the right to a person with disability to express their personality and identity in their classroom, in their community, in their town, in the whole world, where their characteristics and their individuality are accepted and respected; where they are accepted by peers as equals, not as "special" (and lesser).
The inclusion to which I aspire for my daughter requires consideration of the necessary cultural change. That change, in turn, requires consideration of language relevant to that change. The revolution in mindset inherent in what seems, superficially, only linguistic fussiness is extraordinary. It involves moving from a perspective in which people with disability are quarantined in "special places" by "specialness", to a perspective in which the equal rights people with disability claim – including the fundamental right to belong - are recognised, so that they have the greatest chance to choose and carve out their place in the world.