What we need to know when dealing with people with Down syndrome

People, regardless of whether they have any trisomy or syndrome, should always be called people, first, it is the insistent request of the American Society for Down Syndrome (NDSS).

Instead of saying “it’s a Down child”, let’s say “it’s a child with Down syndrome”, because it is a condition, not a disease.

You do not have or do not have Down syndrome. Nor is it abnormal. We often make a comparison almost without realizing it between a person who has this condition and those who are ‘normal’. In this case, it is more accurate to say ‘typical person’ or with typical development.

The NDSS also encourages leave behind concepts like ‘mental retardation’, and talk about intellectual or cognitive disability. The word ‘retarded’, when used in any derogatory context, is reprehensible, as it suggests that a person with a disability is automatically incompetent, says the Society, which envisions a world in which all people with Down syndrome have the opportunity to improve their quality of life, fulfill their aspirations, and become valued members of their communities.

Malena Bonilla de Crespo, special educator, suggests correcting the expression “you are a baby, child or adult with Down syndrome” by “you have Down syndrome”.

“Sometimes I read: ‘He’s a Down boy.’ Is not’!”. When addressing a person with the condition, we do not have to be uncomfortable or nervous. Let’s start by asking his name. If he is a small child, let us rise to his height and thus talk, looking into the eyes. If he is a teenager or an adult, let’s treat him according to his age, without infantilizing them. Let’s use short sentences and speak slowly.

And while Down syndrome itself shouldn’t be approached as a disease, the condition does carry some health risks. Bonilla makes a reminder of take care of the organic part, especially the cardiovascular one, thyroid control (due to its influence on learning), and that of the cervical region (between 2 and 3 years), due to possible repercussions on locomotion.

“I must emphasize that education is a team effort, with a speech therapist, physical, occupational therapist, plus the parents. Setting goals, periodic evaluations and looking for the style that best suits that child and that home ”.

“Disability is a social construction”

Mónica Bermúdez, technical director of Fasinarm (Foundation for Psychopedagogical Assistance to Children, Adolescents and Adults with Intellectual Disabilities and / or in Especially Difficult Circumstances.), Recalls his first contact with a person with Down syndrome, in the 1970s, and shares what he has learned from his experience since that time.

“I could say it was providential. When I finished my high school and was in search of my career (I came from a family of doctors but medicine did not appeal to me), I was given the opportunity to do a student exchange abroad for a year. I came to an American family and attended a public school that had a integration classroom”. In those years, this was a classroom model that was intended to serve the comprehensive development of students with educational needs.

Job opportunities for people with Down syndrome and hearing impairment

“There was my first encounter with a student with Down syndrome and I would say that I discovered my vocation, my life project and what I wanted to study. I mention the vocation because in my case, this inner motivation appeared related to social desires and interests that I had (I have always liked to carry out or support social activities for the underprivileged), and it has been reaffirming itself throughout my life permanently ”.

How does an adult with the syndrome usually react when we treat it as if it were a child?

Little by little, the challenge of inclusion has been advancing, thanks to the change in vision of disability after the Second World War and the pressure exerted by the families of people with disabilities through the civil movements that were generated since the 1960s (1990 in our country) and changes in public policies.

At present, from my institutional experience, lThe adult person already claims their space and expresses frontally their condition, their tastes and their wishes not to be treated like a child, since this has been worked from an early age with the families and in the different spaces of participation. However, this is another social construct that is accompanied by minimizing their capacities.

How can we show respect to a child, youth or adult with Down syndrome?

Above all, considering him a person, someone who is part of society like anyone else. For example, when we are in a restaurant, the mother is asked what the person with a disability wants to serve himself or herself, and he or she is asked. OR If they are carrying out any procedure, they ask the adult who accompanies them: What is his or her name? without addressing him or her. These and other situations are disrespectful that have to be eradicated.

Which of these prejudices do the most harm?

Disability is a social construction, and social stereotypes must change through the ages. You must change your gaze. It is the adults who have the disability on their minds. We must sensitize society so that it looks above all at the person in front of it, rather than at the syndrome. It’s not a chromosome issue, but goes further, to the dignity of any human being.

The person with Down syndrome is a child, adolescent, woman / man, elderly and elderly person who will age like any other, but with a full and dignified life, if learning, training, work and recreational opportunities are incorporated.

We need determined efforts to open spaces for inclusion in the community, through education, culture, sports, leisure, citizen participation and employment. But for this to happen, these spaces have to gain accessibility, which allows as much autonomy as possible for people with Down syndrome.

This accessibility includes the digital accessibility, so necessary in this post-pandemic era). It is not enough to open spaces, it is necessary to promote community interaction, participation and decision-making freely and voluntarily by people with Down syndrome. (F)