INCLUSIVITY
"A man was defined not by his flaws, but by how he overcame them."
- Brandon Sanderson
"A man was defined not by his flaws, but by how he overcame them."
- Brandon Sanderson
In a world without limitations, all people would be represented equally, all would have the same opportunities and the same rights, regardless of their economic, social, physical condition...
But this is just a dream.
Reality is unequal, driven by interests, chosen by a few. People with difficulties are left behind.
This is a problem.
Inclusion is a state that is built, modeled. The process requires a change in people and in society, it is necessary to make its advantages visible, knowing the difficulties involved.
This is the means.
One of the groups with more difficulties of integration into society are people with intellectual disabilities, due to the great stigma that exists around their conditions, their access to education and the world of work is difficult and limited (Kármán et al., 2022). In developed countries, we even talk about exclusion because their condition involves an economic and resource expenditure (Kármán et al., 2022).
But what about science?
Some of the reasons why people with intellectual disabilities are excluded from science include the following (Corby et al., 2015):
On the other hand, access to a complete education and a job related to science is really scarce. UNICEF-EAPRO estimates that “only 1 in every 50 children with disability has access to education”, consequently, we find data such as that in the USA “approximately 17% of people with disabilities are employed, versus 64.6% of those without disabilities” (U.S. Bureau of Labor Statistics, 2024).
These alarming data are also seen in Spain: according to the Instituto Nacional de Estadística e Informática (2022), 0% of people with recognized intellectual disabilities have access to higher education, likewise, barely 9,5% reach employment in the category of technicians and intellectual scientific professionals according to the CNO-11.
Statistics on the Employment of People with Intellectual Disabilities:
Total Level of Studies %, People with Disabilities 2022
Employment Statistics for Persons with Disabilities, Occupation CNO-11, Vertical Percentage:
Persons with Disabilities, 2022
To shape more people in science, we created the project Brilliant minds: empowering diversity in science.
Our goal is to promote the inclusion of people with intellectual disabilities in mainstream science.
We believe that science can be known and performed by everyone, being in fact the diversity and differences,
a strength when it comes to finding different approaches to problems and solutions, as well as various applications
of the discoveries. We want to carry out a project in which people with diverse mental health conditions are
included in science, giving them visibility, tools and above all, the possibility to participate with us in a scientific project.
Taking into account the needs of people with intellectual disabilities found in the literature, we established the following objectives:
By following these guidelines, we ensure that we always take into account the needs and motivations of the people to whom all this work is directed.
To meet our objectives, we designed the “Need-based Response” methodology, which is based on the scientific method and the theory of learning by doing, the foundations of which were proposed by John Dewey in 1897. Through the Need-based Response we try to relate the phases of the scientific method with the learning process itself, so that each phase of this protocol corresponds to one or more phases of the scientific method, thus, we create an analogy through learning by doing of what would be the work in science.
With a Need-based Response we try to make the people to whom the program is addressed the agents of their own inclusion, thinking, elaborating and spreading their capacity and motivation.
First of all, we need to know what the people we are going to work with think and what they like. To do this, we organized a dialogue session with 4 groups from different intellectual disability centers.
In the session, we made a brief introduction to science, they told us what they thought science was, if they had any relationship with it, if they would like to have it... We also briefly explained them our project in a visual and practical way, with experiments and audiovisual material so they could understand it as well as possible. Finally, we did a brainstorming session in which everyone participated telling us the curiosities they had, what they would like to learn and what they would like to do in the following sessions.
In relation to the scientific method, in this first phase we dedicated ourselves to observing. Both they and we asked ourselves questions about the world around us, Why do chameleons change color? What is light? How do people with intellectual disabilities feel about science?
We try to encourage autonomy through action learning, we help them to be participants in their own construction of knowledge, that is why in this session we taught them to think about the possible answers to their questions and to contrast their hypotheses in reliable sources.
We made a compilation of the questions and curiosities that arose in the first session and distributed them among the centers of intellectual disability. In the second session, we taught them to find the answers to their questions using new technologies. In addition, we made drawings related to the topics about which they were curious.
In relation to the scientific method, those involved proposed hypotheses based on observation and the information found.
After the bibliographic search of the previous session, it was time to check if our hypotheses were true, so we designed a series of experiments related to the topics of interest of each group. In the session, we showed them how to perform the experiments and explained the theoretical basis behind them, then they replicated them.
After replication of the experiments, we tried to elucidate why we had obtained these results and whether they corroborated our hypotheses. This phase corresponds to experimentation and obtaining results in the scientific method. We tried different alternatives of the experiments to see if we still had the same results and why or why not.
Meeting other people with the same conditions as you, who also have your concerns, and who can bring you not only company, but also shared learning, is one of the objectives we intended to achieve in the final session. By connecting with other centers in the same place, we generate a network of support through science that improves the quality of life.
In the last session, we met at the Botanical Garden of the University, a natural and public environment where we could share all the work and learning done so far. The team set up the space with tables and chairs so that each center had a kind of stand where they could show the rest of their colleagues the experiments and the knowledge they had acquired. Center by center, those involved explained and showed their experiments and their theoretical basis, shared doubts and answers, as well as laughter. :)
This last phase corresponds to the conclusions. Sharing your work and getting feedback from other people helps us to see the results from different prisms, a fact that certainly does not only apply to science. We, session after session, have been conceiving the general world and the world of people with intellectual disabilities in a different way and, of course, in a more complete and tolerant way.
Self-regulation
An activity based on the needs of the executors implies a self-regulation of the method and content. If our basis are the knowledge, concerns, skills, opportunities, of the people with whom we are working, everything we build from these bases will be bounded by itself, so we started from what caused curiosity to people with intellectual disabilities with whom we dialogued, we knew what they are used to do and their previous knowledge, which helped us to adapt and help them reach their zone of proximal development.
Gratification
The possibility of adapting and regulating the level of the activities allows us to achieve a state of flow, optimal for learning in each session. The fact of achieving the expected results, understanding why things happen and also being able to explain it to other colleagues, ensures a gratification for learning in itself around science and lays a foundation for gradually building a more autonomous and self-confident person.
Inclusion
With this method, the agents of inclusion are not us. We do not simply give them things done to facilitate their access to science, but we give them the tools so that they themselves can be included, so that when we are not there to help them, they have enough autonomy to be able to continue doing science on their own.
To combat the stigma and social invisibility suffered by people with intellectual disabilities,
it is not enough to provide them with the tools, we must build a space where they can put them into practice.
That is why visibility and social awareness are so important.
To give the world access to the Brilliant Minds initiative, we have developed with the centers a
series of open access resources:
The product of all the bibliographic research, experimentation and artistic expression culminates in flashcards with curiosities. These flashcards contain 40 questions and 40 answers on the topics of interest that they have researched.
The flashcards are adjusted to the level and vocabulary that people with intellectual disabilities have, as they have elaborated them. In addition, whenever they want to consult their own or other centers' curiosities, they can do it, because each center was given a copy of the set of flashcards. Finally, they were given a blank template so that they themselves could continue writing their curiosities and researching.
To raise awareness in society and in the entities we have dealt with, we created an infographic with “Eight things that prevent science from being truly universal”. With this brief approach to the problems that people with intellectual disabilities have in accessing science, we aim to promote inclusion and provide tools for them to know how to deal with them.
To create an awareness of change also in companies, we have contacted some of them to ask them about their policy regarding people with intellectual disabilities, and to our surprise, hardly one has aids such as a disability quota.
As a future projection, we devised some more activities that could be done with people with intellectual disabilities, for example, take them with us to some congress or talk we attend, so that they feel integrated into the scientific community and able to use the tools we have taught them. To generate a legislative impact, we propose to hold a round table with them, companies and government representatives to discuss the changes that should be made in this paradigm and if they are plausible to implement.
With our Need-based response methodology, we ensure an integral and personalized learning of science, where we provide them with tools so that, in an autonomous way, they can apply and disseminate them in their daily context, generating an impact as agents of their own change. This change not only remains in the proximity, but we try to spread it to society with our videos, flashcards, guides and dialogues.
At AflaxOFF we have planted a seed so that this problem of underrepresentation is mitigated little by little, and we thank all the people we have worked with for the valuable learning they have given us.
Ahmad, W. (2012). Barriers of inclusive education for children with intellectual disability. Indian Streams Research Journal, 2(2), 1-4.
Corby, D., Taggart, L., & Cousins, W. (2015). People with intellectual disability and human science research: A systematic review of phenomenological studies using interviews for data collection. Research in Developmental Disabilities, 47, 451-465.
Dewey, J. (1958). My pedagogic creed (1897). School Journal
Kármán, B., Szekeres, A., & Papp, G. (2022). Interventions for acceptance and inclusion of people with intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disabilities, 35(3), 641-654.
U.S. Bureau of Labor Statistics. (2024). Persons with a disability: Labor force characteristics - 2023. U.S. Department of Labor.
