Over the past few months, 31-year-old Noelia Garella has received significant international media attention for being the first teacher in Argentina with Down Syndrome.
As a child, Garella was once called a “monster” by the head teacher of her nursery school. Now, she directly counteracts these damaging preconceptions by teaching preschoolers at Jardín Maternal Jeromito in Córdoba, Argentina. “It motivates me so much to see the children,” she tells The Indy.
Garella attributes much of her success to her supportive family and coworkers, expressing a desire for everyone in society to have access to “opportunities to work, to study, to enjoy life.”
“We’re all equal,” she adds.
Inclusion Over Integration
Access to employment is scarce for people with intellectual disabilities in Argentina. Since 2003, a state law has required that 4% of employees of publicly-funded organisations have some sort of disability. However, it is not widely known and no entity exists to enforce it. Further, the law does not apply to the private sector, which employed 90% of the 117 employees with Down Syndrome surveyed in 2013 (according to the Down Syndrome Association of the Republic of Argentina). The same survey indicates an employment rate of only 48% of adults with Down Syndrome.
A further challenge emerges in cultivating spaces for inclusion as opposed to integration, in which “the differences of people were understood as a deviation from what is considered normal” and are thus expected to adapt to the environment and everyone else. According to the National Institute Against Discrimination, Xenophobia, and Racism (INADI), this attitude contributes to the formation of prejudices and stigmas and leads to discrimination.
The use of language such as “normal” and “abnormal” justified the common practice of isolation just decades ago. Sandra and Eduardo Metzger, from Hurlingham in the Province of Buenos Aires, recall being advised by a neurologist to leave their newly-born son Agustín in an institution. While the Metzgers never considered this course of action, the say they faced a problem as “there wasn’t information for where to go.”
The end of the 1980s, however, proved to be a period of change. Through word of mouth, the family was able to connect with a specialist who worked in early stimulation, as well as others who helped foster the environment that Agustín needed to thrive. “It’s endless the things that come from him,” Sandra notes, “if you take a path that allows all of that to emerge.” On the way, the family encountered first-hand the effects of integration versus inclusion.
When Agustín attended one integrated school, for example, Sandra observed over time that “all of the energy that he had was kind of shut off.” The family found that the school was not equipped with the proper information and resources for individuals with Down Syndrome and elected to invest in other activities that would includeAgustín rather than just have him integrated.
The model now endorsed by top human rights organisations is this one of inclusion. According to the Down Syndrome Association of the Republic of Argentina (ASDRA), this model sees an environment in which “everyone lives together, develops together, makes decisions and shares. If there’s a person that’s having trouble participating in some way, then the environment is what needs to be modified.” This can take the form of wheelchairs for people with physical disabilities, for instance, or specific texts for students with intellectual disabilities.
A Hesitant Market
Fundación DISCAR is one organisation in Argentina working towards meaningful social and labor inclusion for people with intellectual disabilities. As a former dancer and actress, Victoria Shocrón originally founded Fundación DISCAR in 1991 with the hope of opening “paths of communication through art.” The space expanded from offering art workshops to forming an alliance with McDonald’s and now includes personnel from over 35 corporations, all of which receive training before the arrival of a person with disabilities. The organisation also provides a generalised 10-month training course designed to prepare individuals with intellectual disabilities for any type of work environment, and professionals to accompany each employee throughout his or her career.
According to Vanesa Ferraro, Director of DISCAR’s Employment Programme, the process of finding willing partners is complicated by “fear and lack of awareness that companies have when it comes to people with intellectual disabilities…There’s still not an organisational culture of labour inclusion.” As a result, job offers are few in proportion to the number of people trained and ready for work.
Still, the programme has successfully supported many individuals who now contribute to their family income while simultaneously experiencing the fulfillment of working life. Some are now retired after 20 years of work and are thus “able to get pensions like any other employee.”
This represents a key victory, as the life expectancy of adults with intellectual disabilities now averages 65 and continues to improve. Shocrón notes that the organisation places a strong emphasis on empowering individuals to lead autonomous lives: “When a family comes with a person with a disability, we always try to listen to the person with a disability so that they are the one who chooses what they want to do. We always try to place the person with a disability as the protagonist of that choice.”
Non-profit Cascos Verdes shares the goal of empowering individuals with intellectual disabilities to actively shape their own futures, while also changing societal perceptions. The organisation has partnered with four universities in Buenos Aires and two in Salta to form a four-year Environmental Education curriculum. For the final two years, students give environmental workshops to groups of people without disabilities.
The organisation’s original mission upon opening nine years ago was to identify people with intellectual disabilities who had high potential and help to open doors for “real inclusion.” However, like Fundación DISCAR, Cascos Verdes struggles to match its high demand of trained students to a hesitant market; though some graduates are later contracted by companies to give periodic environmental courses, less than 50% continue to work after the programme ends.
Still, changed perceptions can lead to a changed market. Since 2007, graduates of the Cascos Verdes programme have provided trainings to 50,000 individuals in total – in primary and secondary schools, universities, companies, events, and even the legislators of the city of Buenos Aires as well as Argentina’s national representatives. In the words of Executive Director Gonzalo Bazgan, “this means that 50,000 people learned something about the environment from a person with an intellectual disability. And that definitely changes your perception.”
Through their work, the people of Cascos Verdes hopes to provide individuals with “tools so that in the future they can value themselves even if they don’t have a job.” Though labour inclusion is still not a guarantee for many willing and trained people with intellectual disabilities, the experience of going to university and delivering presentations to audiences of sometimes more than 350 “empowers them to want to seek something else…This for us is a success in itself.” Bazgan cites that many graduates are motivated to learn to travel alone and manage their own money as a result of the program.
Agustín Metzger completed the program in 2008. Before receiving job training from Cascos Verdes and another called Center of Training and Resources for Support of Inclusion (CCRAI), Metzger participated in a workshop in which he built plastic materials. Whereas this previous job had offered him very little in the way of social interaction, the university course gave him the opportunity to connect with others his age, both with disabilities and without.
Now, Metzger conducts environmental training in primary schools. He notes that “the kids loved me and they help me in not polluting the environment.” In the past, Metzger traveled on his own every day to work at the restaurant Bread Point in Retiro, where, according to his boss, he had a profoundly positive impact on the employee dynamic. Metzger has also found his place on the athletic field; in 2015, he represented Argentina in the first annual Mixed Ability Rugby World Cup in England and won “Man of the Match” in all three games. This year, he plans to play in Spain.
Due to a lack of information 30 years ago, Sandra remembered that “everything was so dark and unsure” and that she did not anticipate Agustín’s independence. “In truth,” she says, “we had a great time…It’s beautiful to be with someone who’s happy every day. It’s very fullfilling.” In the future, Agustín plans to work as a Coaching Assistant for tennis and soccer and has expressed hopes to live with his girlfriend.
Training for Independence
This month marks the close of a two-year pilot program, ALVI, launched by Fundación DISCAR with the goal of preparing individuals to live alone outside of the family home. The three professionals running ALVI decided to conduct trainings in an actual apartment to allow for a more simulated learning experience. In attempting to rent the space, however, Vanesa Ferraro and her team faced the same obstacles that hinder trained individuals with intellectual disabilities from obtaining work in the first place.
“When we told them what we wanted to do, who we were, and what it was about, the property owners decided not to rent to us because they were afraid, they felt responsible for what could happen– all of the prejudices reappeared.”
Fortunately, after a series of rejections, they were able to rent an apartment from someone who had previously worked with DISCAR and move forward with the plan. Ferraro explained that while the training focuses on concrete skills such as paying the bills, using public transportation, cleaning, and cooking, the ultimate goal is to “get to know oneself, know what skills one has, and to be able to ask help from others.”
By the end of the pilot, Ferraro’s team had observed a dramatic swell in students’ confidence. An evaluation period of the program is currently in session, and results will determine the future of the project.
As these anecdotes show, inclusion is a two-way street. An individual’s training and qualifications can only go so far in attaining a job or apartment if the other party is not willing. Yet with the support of their families and these organisations, individuals with intellectual disabilities are deconstructing the stereotypes that limit their access to opportunities, and more and more people without disabilities are realising that inclusion is actually in their best interests.
As Sandra Metzger explains, “Society has changed [since Agustín was born] in the sense that there’s much more information and many more experiences that confirm that kids can be included, and not just be included, but that there can also be a reciprocity.”
ASDRA and other human rights organisations have been instrumental in changing the accepted language from “disabled people” to “people with a disability” and shifting the onus of responsibility for inclusion from the individual to the environment. As Shocrón states, “If the environment modifies, if it facilitates access to all fields of society, [a person’s] disability won’t prevent [him or her] from doing what we all do.”
And society’s potential for change depends on the willingness of all of its actors. “The power is in our hands,” Bazgan asserts. “Everyone has to, from their place, try to help to develop spaces where people with disabilities can be included.”