Group 8: (Kids with disability + Able-bodied kids) * Inclusion = Connecting Peers
“Definitions belong to the definer, not the defined.” Toni Morrison
‘Disability’ is just a term associated with some individuals, which cannot ever deny any individual’s capabilities despite of any form of mental or physical inability or deficiency.
This project is a part of “Service and Experience Design” workshop. The broader context for this is “Disability in India”, under which our group chose the topic “Connecting Peers” in the educational space. Under this topic, “Inclusive Spaces” is the areas that we are focusing upon. This work is done for the first phase of the project where we had to find the intervention areas, after finding the gaps in the current systems pertinent to the chosen topic.
Methodology
Major data collected for this project is through secondary research. Primary data collection was done during one field visit to Enable India organization based in Bangalore that works for empowerment of people with disability in the society.
Process
We have mapped our initial process in different maps. The maps reveal the way we unfolded the topic until now.
Map Zero
This an overview about the focused topic of inclusive spaces. We collected data about the existing systems working for this topic. At this moment, there exist a few inclusive schools such as Amar Jyoti School in Delhi [7]. Inclusive school is where children with disability and able-bodied children both goes for education. There exist few organizations such as Family of person with disability organization, which identifies schools and children, and sensitizes its management to enroll the children with disability. There usually exist a lack of resources thus these organizations have limited success, but these institutions are integral to the promotion of inclusiveness and acceptance. Another system in place is the resource center model, where specially trained professionals are allotted to teach, monitor and support the progress of the child [2].
In the case of India, often what happens is some disabilities go unnoticed in an educational environment and this unawareness leads to the parents also being dismissive about the condition of the child. Moreover, at a younger age, children are not supportive and can resort to bullying, which can have a long-term effect on the child [2], [6]. The point of connecting peers is multi-faceted; to sensitize, de-stigmatize and reduce the gap between the able-bodied and the one with disability.
We started by identifying the social attitude towards subjects such as these; they ranged from curiosity to pity, including indifference, embarrassment, fear and empathy [6]. The two factors, which play major roles in attitude building, are the parents and environment in which the children with disability exists. In this environment peers, teachers, neighbors and unknown people exist. Their attitude towards the disability will determine the way the child processes the disability through positive or negative reinforcement.
Government policies also play a major role in the way curriculum are designed, the forming of opinions and the amount of monetary support that these institutions may receive. The approach that is suggested to inclusive education is universal design. It talks about how inclusive spaces should work.
Now we started digging deeper and identifying the stakeholders and interconnections in the existing system.
Map 1 (Bird’s eye perspective)
Here we started off by identifying our point of study. We were looking at the ways in which we could connect the children with disability better with their peers or vis-à-vis able-bodied peers. After identifying this point of focus, we started mapping out the stakeholders who are connected to inclusive spaces. We looked into educational spaces and the way they segregate students; special schools, inclusive schools that facilitate learning for everyone, and regular schools [2], [3], [4]. Within and outside the educational institutions lie common spaces like playgrounds, parks, auditoriums, libraries and spaces for extracurricular activities.
On the upper side of the map we also started mapping the stakeholders who are closely linked with each other. The groups of stakeholders identified were the children with disability, parents, teachers, peers, learning tool providers, training providers’ institutions and the government. Each of them play an equal part in affecting the institution on a large scale.
This mapping was done so that we could get the bigger picture of the environment, and the stakeholders who are present and interacting.
During this process we also identified the types of parents that exist when it comes to a children with disability. The parents can fall into three broad categories; parents in denial mode, parents who are moderately or overly sympathetic towards the child, and supportive parents who encourage the child to explore and learn [6].
After identifying these touch points around a children with disability, we realized that focusing on inclusive schools would be the best way to identify a point of intervention.
Map 2 (Macro mode map)
While looking into the inclusive spaces, we realized that learning problems arose from a high child to teacher ratio [2]. The initial thought was just train more teachers, but soon we realized that this was not the best solution. While that is the optimal solution, there may be low motivation from the teacher side. Therefore what would be a better solution is introduce the family into the system. This way not only is there more pro activeness from the parent side, but the family also has knowledge to help the children directly. A drawback of this could be that the parents may be too close to the children and may respond emotionally.
Instead of over-reliance on teacher training programs, what could work is family members volunteering under a structured pattern. The guidelines could be set-up collaboratively by family members and teaching professionals.
There exist many government policies to aid the people with disability; policies that provide fully to an individual, training programs for teachers, and schools designed with a specific environment to facilitate better learning [5], [8]. One of the best examples of a government policy is the Sarva Skisha Abhiyan [1] which was developed to firstly improve the awareness of the people with disability, and also provide to their needs. There was one government policy that had come up to provide primary education to the children with disability, but the program failed due to a lack of resources.
One aspect that was considered was the curriculum for learning. From the design of the curriculum for the children with disability, to sensitizing able-bodied students to disabilities from an earlier age [8].
In transit
In the process of mapping out the inclusive schools, we didn’t consider the difference between inclusion and integration. This critique of our own work was important, as we were able to make the distinction between inclusion and integration. We realized we were looking at an integrated system instead of inclusive, which helped us further focus down to our target group and target question. We planned for integration without enough support for them to be truly included in the learning process.
Map 3 and Map 4 (Micro mode map — Emotion map)/ User Journey map
After boiling down the concept further, we realized what would give us a truly empathetic experience would be seeing the emotional influence of each stakeholder on one another. We soon noticed that there were first level and second level influences that were occurring. One direct and the other being an indirect influence. The statements that are mapped are taken from papers from secondary research. [2], [9]
We needed to look at the emotional response to stimuli, which in this case is an action.
Throughout our secondary research what we didn’t encounter was the influence the peers have on one another in an inclusive environment. Here what is important to understand is that interactive activities need to be held, social events need to be conducted in order for other forms of inclusion instead of just physical inclusion.
Evaluation of sustainability of current system through experience mapping
Experiences can be extrapolated from the emotions that a person has through his/her entire journey. It’s a step further to emotions. Through the emotions mapping and user journey mapping, we found how different stakeholders were affecting the children with disability and vice versa. In the current systems there are mixed instances where the experiences of the child are sometimes good and sometimes bad. Good experiences stem out of the emotions of feeling confident, sense of belonging, feeling of being important and being considered. But there were considerable number of negative experiences when the child felt insecure, under confident, isolated, discouraged and being not given importance. All these emotions have been mapped along with the activities through which they are evoked in Emotion Map. [2], [8]
For sustainability to happen, it’s very important for social inclusion of children with disability to take place along with the physical inclusion. Majority of the negative experiences that the child with disability faces is due to reluctance on the part of the stakeholders to accept him/her in mainstream education. Persistent bullying from some peers, concern of parent about the influence of child with disability on able-bodied child, ignorance and negative attitude on the part of regular teachers all these factors give a telling evidence that social inclusion is still missing in existing inclusive schools. As long as this happens, social sustainability can’t happen in the longer run.
Financial sustainability can be achieved by gaining funds through Govt., charitable trusts, NGO’s, school fees. However as long as this funds are utilized just for the provision of physical inclusion , without paying attention to social inclusion, then won’t be a viable model to sustain in future.
Areas of intervention
Through secondary research we learnt that lot of focus was being given on physical inclusion of children with disability, e.g. provision of ramps, training of teachers, changes in curriculum. However, very less focus was given on social inclusion of children with disability in mainstream education, which is an important factor in acceptance of child with disability in the society. Bullying, discouragement, unsupportiveness, isolation etc., stem out of this nonacceptance. “How to make social inclusion in inclusive schools” is the broader area of intervention that we are looking at.
We also kept noticing that the family has a lot of experiential knowledge in how to conduct yourself around people with disability, and how to provide for them. Currently, majority of the focus is being given on training of teachers, provision of resources, curriculum changes whereas peers, who are in fact a big present resource is being largely ignored. Similarly, apart from assistance of mothers of children with disability in some activities like feeding food, helping with washroom rituals, not much involvement of parents is happening. Can family of child with disability assist in peer-to-peer interaction? This is something that can be thought about more.
Another aspect we looked at was the perception of the self. The perception of the self is developed on the basis of how they see themselves and what people think of them. This perception of self-needs to be nurtured from a young age, by parents and people around them. This can have long-term effects on stigma, pity and apathy.
What did we learn through this activity?
Through this activity we learnt that there are many layers that exist in a system. There are multiple level of connections that happen between different stakeholders and to catch the finer nuances of the systems, system mapping proves to be very helpful. The emotions map got us to see at the micro level as to which stakeholders were directly affecting the child with disability and which were acting as secondary influences in a more passive way. We also tried user journey maps to further validate what we got through emotion maps. These exercised helped us get deeper understanding of the current system and find the gaps and areas of intervention. Given that most of the data was available in the form of secondary research, this activity proved fruitful to dig deeper.
References
1.Report as EXAMPLES OF INCLUSIVE EDUCATION — UNICEF
7. Satyamev Jayate S1 | Episode 6 | Persons with Disabilities
To know more about the process: Second phase, Final Concept
This article is co-authored by four group members — Radhika Bhagwat, Kaustubh salunkhe, Manjiri Godbole, Divij Joshi, of this system design project.
