Never too early, Never Too Late

NEVER TOO EARLY, NEVER TOO LATE FOR INCLUSION

Never Too Early, Never Too Late: Working Towards Inclusive Lives for People with Disability Elizabeth Neuville and Geeta Mondol Keystone Institute India Delhi, India

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NEVER TOO EARLY, NEVER TOO LATE FOR INCLUSION

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Abstract

Inclusion is a term often used, and yet there is little agreement about what is meant, particularly when it comes to people with intellectual and developmental disabilities. We are fortunate to be living in a time of rapid social change within India for at least some deeply marginalized groups of people, including people with disability. This paper will outline some of the areas of confusion, and even outright contradictory uses when it comes to inclusion as a concept, as a practice, and as an ideal. We will propose a clearer framework for inclusion in the belief that we will begin to hold a shared vision of what a fully included life might be.

To bring life to the discussion and remind us that, embodied within our arguments and agreements, are very real people who have experienced a great deal of wounding and segregation at the hands of society. The paper will also document a values-based approach to assisting 8 women, who have lived most of their lives in a large institution, back into rich community life. This effort demonstrates the high developmental growth that is possible in non-institutional, high-quality community settings, and the ability of people with developmental disabilities to grow, thrive, and contribute to their communities. Perhaps most importantly, the lessons learned bring the struggle to create the conditions for authentic inclusion into our hearts and minds.

Keywords: Inclusive practice, developmental disability, inclusion, residential services. Inclusive mindsets

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Never Too Early, Never Too Late: Working Towards Inclusive Lives for People with Disability The word “respect” shares a common Latin root with the word spectacle, meaning “ to look” and can be read to mean “take another look”. In this paper, we will take another look at the concept of inclusion for people with disability, in an effort to return to a more meaningful discourse with a shared understanding of the possibility and promise of inclusive practices.

A sea change is before us in India, as we struggle towards a better future for people with disabilities and their families. International agreements and covenants, and national law (Rights of Persons with Disability Act, 2016) have set a high bar for full inclusion in all areas of life – school, neighbourhood, work, and home (Girimaji & Srinath, 2010). This is a significant achievement, and more and more, people with disability are being seen and heard in public places and spaces.

A Foggy Understanding of Inclusion And yet, it seems that people with intellectual and developmental disabilities have been mostly left out of this movement towards equity for and alongside disabled people. As has happened over and over around the world, intellectual and developmentally disabled people are largely left behind as real changes toward full participation in life happen for others, and egregious compromises are often made. These compromises might be seen as a part of the slow but sure progress towards real integration. However, in order for this to be so, we need to hold a common, shared vision of what a fully included life would look like for people with disability.

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Instead of the hoped-for inclusion, we find children and teens with disability excluded routinely from schools, and instead sent to informal centres which are often completely segregated (Edwardraj, Mumtaj, Prasad, Kuruvilla, & Jacob, 2010). These centres often declare themselves inclusive on the grounds that they include people with disabilities (exclusively), or because those who attend such programs and their families feel included.

Another strategy that many typical mainstream schools use is to accept and accommodate students with very mild impact of disability successfully, then declare themselves fully inclusive. Certainly, this is an excellent step towards real inclusion, as long as there is honest and real dialogue that the way is only just started, and that there are miles to go as we learn to accommodate students with all sorts of disability, including those with very significant impact of developmental and intellectual disability.

The scenario above is replicated over and over across the country, where programs which serve only people with developmental disability laud themselves for being inclusive.

Vocational training programs and residential programs tend to do the same. Across India, enormous residential facilities are being proposed, or built, or even operated, with a promise to families that their son or daughter will experience belonging and acceptance, as well as a safe and protected life. With the best of intentions, these types of facilities are probably some of the most exclusionary service forms that can be imagined. They are frequently located in isolated areas with little access to everyday communities, and may openly envision themselves as a total institution, where all sorts of services are located. The founders and operators may have a vision of hundreds, even thousands of people with disability coming to live, to recreate, to practice religion, to have therapies, to get job training, to have employment, and to access health care. One can imagine that someone could live their entire

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life in such a segregated bubble, never venturing out to the very real community which exists outside the boundary walls.

There may be many reasons that people want to build such facilities in India, and there may be advantages to such bubble options if one doubts the capacity of authentic communities to include people with disabilities. However, we believe that clarity and honesty must exist that such segregated and congregated services do not meet the standard on inclusion, and in fact reside on the far left of the trajectory of inclusion (Taylor, 2017). Once we accept this as the truth, we are ready to get to work to move towards inclusive practice, to recognize that the bar is high, to celebrate the progress that has been made, and to keep working towards better practices of inclusion. This is our charge, we believe, as we work towards an India where everyone, including people with intellectual and developmental disability, have a place at the community table. This is a clear vision which requires us to have a shared understanding of what inclusion is, and what it is not. This draws an important distinction for us. We propose that inclusion is not a feeling, and instead it means that people actually experience inclusion in what already exists in Indian society. It is worth a brief exploration is to why we as professionals, administrators, family members, marketers, and service designers claim to be fully inclusive when we have such a long way to go. Pelleboer-Gunnink, van Weeghel, & Embregts (2021) note that people with developmental disabilities are often bound by the mindsets and stereotypes held by others about them. For example, the “eternal child”, “burden of charity”, and “special” stereotypes are nearly memes in our own minds that prevent us from thinking of people with intellectual disabilities as being able to work, as being able to learn and grow over time, and as being contributors to the community, not just passive recipients of the benevolence of others. When these stereotypes dominate our unconscious mindsets, we are unlikely to believe that a typical student would want to be in

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friendship with a classmate with a disability. We might assume that a person with a disability should not and could not work at a real job with typical co-workers, and that they are unable to make decisions in their own life.

In order to shift such mindsets, which we all tend to hold, it would be good to remind ourselves that global practice, including practice in India, show that inclusion in the wider society and community is not only possible, it is being accomplished to one degree or another, across India (Girimaji & Kommu, 2016). Often these wonderful examples of people taking a respected place in society happen in between the cracks of formal services, in everyday neighbourhoods where we give the community an opportunity to really know a person with a developmental disability. All of the disability awareness campaigns held across India demand that everyday people accept people with disability, that they include such people, and that they welcome such people are destined to make us all feel good but in at least some ways fail the people they are supposed to be benefitting. In fact, people in everyday communities will learn to be with people with significant disabilities by actually being with them – as classmates, co-workers, neighbours, and friends.

A Proposition for a Clearer Understanding of Inclusion We propose that we will make a more honest and fruitful assessment of where we are and where we intend to be if families, professionals, service operators, advocates and teachers can reach agreement on a helpful premise about what inclusion is. Further, we propose this following formulation when thinking and talking and assessing how inclusive people’s lives are, and how inclusive our services are in reality.

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WE PROPOSE THAT INCLUSION INVOLVES PEOPLE WITH DISABILITIES …BEING WITH TYPICAL, EVERYDAY PEOPLE …IN TYPICAL PLACES IN THE COMMUNITY …DOING TYPICAL THINGS …IN TYPICAL WAYS …WITH TYPICAL PEOPLE.

This is, of course, not a definition of inclusion, just a working understanding or framework so we know it when we see it, and so that we keep working in this direction. Indeed, we must credit the thinking behind this formulation to Dr. Wolf Wolfensberger’s immensely helpful body of work on the topic on Social Role Valorization for leading us in this direction (Wolfensberger, 2012). It is a high bar, and one that we can only move toward imperfectly and with lots of learning along the way. It is in many ways a “thinking practice” which has the power to steer us away from the many segregatory practices which we seem to often gravitate towards. A good colleague of ours uses the wonderful concept of, “do more and more like this” as a motivating way to keep trying new ways, gain practice about what “works”, and keep our hearts and minds centred on opportunity, rather than overwhelmed by how much work really needs to be done.

Creating the Foundations of a More Included Life As a demonstration of an attempt to put this type of a thinking tool towards developing a service structure that leads to more and more inclusion, we now introduce you to 8 women who we first encountered in a government shelter home in northern India. All were people who had been deeply wounded at the hands of society, no doubt, and had been brought to the

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institution by the police. Together, these 8 women, ranging in age from 21-62, had collectively spent well over 100 years of their lives in this place, or others just like it.

If we were to characterize the government institution on a scale from “most segregated and isolated” to “most inclusive”, we would find it on the most extreme end of most “isolated and segregated”. Congregated along with 130 other women with disabilities, the only reason they were placed together in this complex was because they shared a disability label. The profound rejection they had faced in life was severe – rejected by families, and several were “kicked out” of the orphanage for typical children next door because of that disability label.

As we imagine together them living so many years in this place, also know that they lived behind three locked gates, topped by barbed wire. Literally, the only time they ever left this place over their many years there was to go to the hospital, taken in a police van. They were deeply de-individualized, having no personal possessions of their own, not even a photograph, with uniform haircuts, and clothing that was selected from a pile. Their impoverishment was profound. Impoverishment of money certainly, but even more, impoverishment of relationships, of life experiences, and of meaningful ways to fill the endless days and nights of existence.

Gazing for the first time upon the facility back in 2018, we became committed to creating exit paths so at least some of the women could experience a fuller life – one of belonging, growth, relationships, and richness. In 2019, six women embarked upon a journey towards this more included life, and in 2021, two additional women were able to leave. We have such respect for the courage of these women, excluded from birth, to trust us enough to try to lead

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a bigger life, to help us understand what an included life might look like, and to establish a small-scale example of what moving towards inclusion could look like.

Our first thoughts were that inclusion would be best pursued if the women lived in typical settings, in a smaller-sized town or city, and in small groupings. We realized that the settings they lived in must be inviting to typical people, and must look and “feel” welcoming to others so they will want to be involved with the women. One of the most forbidding elements to the institution was the tall walls, the many signs indicating that this was a “facility” rather than a home, and the location next to a garbage dump and surrounded by barbed wire. As well, gaining entry to the facility involved all sorts of registration with the guards, making people from the community not want to get involved. We decided that, metaphorically and literally, a welcome mat must be laid out to encourage people to connect. We were successful in locating two modest but typical houses located far enough apart in the same village so they would not be connected in the minds of neighbours, and each small home could comfortably house 4 of the women.

We were careful to involve the women in every way we could. We showed them pictures of the houses, made sure they visited the houses before they moved in, got to know them, helped describe what we thought life would be there, and helped them think through with whom they might like to share a home. As they planned for their new life, we tried to create transition activities that would prepare them for the changes ahead, and to engage them in the process. This included going shopping to purchase their own clothing and a suitcase to move with. For all of the women, this was a brand-new experience, the first of many. After all, moving in with only a few donated old clothes in a garbage bag does not send the

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message to neighbours that they are people they might like to know. At best, they might be perceived as “charity cases”, at worst, as interlopers. As well, owning a few of one’s own possessions sets the stage for a respected community life. Nearly right after the move, we made sure that each of the women began to chronicle her own life with photographs in albums, telling the new story of their lives. As an added bonus, this allowed them each to have something to share with the many people who came to visit them in their homes after they moved. Personal touches to their home started the process of making the house into their home.

All of us worried a great deal about whether their neighbours would accept them – would they be harassed, teased, ridiculed, or even exploited? What if the newspapers began reporting on these disabled women who had dared to move into their town? In fact, all of this failed to materialise. Indeed, the neighbours were curious, and wanted to know what was going on, and who was moving in. However, we prepared for this, and helped the women put their best foot forward in terms of their personal appearance and clothing. We did not allow them to be transported to their new homes in a police van as was first proposed and assumed.

Regular taxis were used, to send a message of worth and dignity. No signs were placed outside, no banners, and there was no inauguration by government officials and well-wishers.

Instead, there was a farewell celebration at the institution, where the women that they had shared their small lives with, and the staff, said their goodbyes. For every decision, especially at the beginning, we asked, “How do we help everyday people see these women as unique individuals, as different from each other as anyone else, and as people they want to know?”

We used “doing typical things, in typical ways” as our guide, in the hopes that it would elicit welcoming. We were not disappointed.

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An Included Life The “inclusiveness” of the program, and the “includedness” of the women we serve in this program is not perfect, but exceeded our expectations, and has had so many positive aspects.

After about three years, the women are well known within the community, and greeted by name by so many people. They each have individual friendships with non-disabled people , and the staff who work with them facilitate and encourage these relationships. People keep an eye out for them, are quick to help if anything is needed, and the interchanges between the everyday citizens and the women are reassuringly typical, respectful, and natural.

In fact, the selection of the staff was done with our framework for inclusion firmly in mind .

Who would be the perfect staff support workers to keep them safe and guide them, but also be best equipped to help them belong? Very intentionally, we sought people from the local community who are well regarded, who have valued roles within the community, and have a lot of “belongingness” themselves. We did not seek out disability professionals, special educators, or those with experience “supervising and minding” people with disabilities.

Instead, we sought out people who would serve as excellent ambassadors for the women, and, in hindsight, that was one of the best decisions made. According to our inclusion framework, hiring typical, everyday people to be with the women made a great deal of sense, and paved the way towards others engaging with them in positive ways.

These days, everyday life is all around the 8 women we serve to live in regular community – invitations to weddings, civic participation in politics and voting, gatherings of neighbours together, festivals and participation in diverse faith communities, walks to the market, and, in some instance, real employment are now everyday, or at least regular, experiences for all of the women. They have changed physically, and in other less tangible ways, as they have a

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vibrancy, a healthy glow, a decent wardrobe, and a growing collections of valued possessions that have great meaning to them, that speak to their lives. As well, they have a deep engagement with their home, and their community.

Interestingly, as they have ‘become’ themselves, even, in one woman’s case, in her later years of life. We have seen doors begin to open that seemed closed forever to them. Families, seemingly untraceable, have been reconnected with their long-lost sisters and cousins, joyful to know they have a bigger family circle. Employment, which was said to be impossible, is now a reality for some of the women, although there is much more to be done in this area.

Perhaps most importantly, the fears that many of us had about whether they would be safe in the “real world” proved mostly unfounded. With proper safeguards, and trustworthy friendships, and lots of helpful people keeping an eye on them as they lead relatively independent lives have proved to be safeguards and protections that money can’t buy in large-scale, congregated, residential services, that may or may not lay claim to being inclusive.

This small-scale program, which can be replicated in some form in any number of places across India, shows us that right now, today in fact, even people with severe impact of intellectual disability can lead more included lives. The price that we pay for this is that we must be honest about what genuine inclusion is, and decide if we are willing, as service designers and professionals, to make ourselves a bit smaller so that people with disability can be a little bit bigger and stand a little taller. The legacy of large, segregated facilities is clear – one only has to look around the world at what segregation leads to when groups of people made marginalized by society are put all together, apart and away, in places where they are,

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in effect, hidden away from typical people. We believe that developing truly integrated service forms, including schools, workplaces, homes, and social spaces that all people share together has merit, not only for making the lives of people with disability fuller, but in making society simply work better for everyone. We may be far from realizing our vision of an India in which everyone, including people with significant disability, have a place at the communal table, but this tiny effort reveals that we can hold a truly inclusive mindset and follow it with inclusive actions.

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References

Edwardraj, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., & Jacob, K. S. (2010). Perceptions about intellectual disability: a qualitative study from Vellore, South India. Journal of Intellectual Disability Research, 54(8), 736-748.

Girimaji, S. C., & Kommu, J. V. S. (2016). Intellectual Disability in India: Recent Trends in Care and Services. Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Springer International Publishing. 23(5), 441-446.

Girimaji, S. C., & Srinath, S. (2010). Perspectives of intellectual disability in India: epidemiology, policy, services for children and adults. Current opinion in psychiatry, Pelleboer-Gunnink, H. A., van Weeghel, J., & Embregts, P. J. (2021). Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination. Disability and rehabilitation, 43(4), 489-497.

Rights of Persons with Disability Act (2016). Retrieved from http://www.vbspu.ac.in/wpcontent/uploads/2016/01/notfn-right-of-perons-with-disability-act2016.pdf Taylor, K. (2017). The Importance of Family and the Deficiency of Residential Institutions.

International Journal of the Jurisprudence of the Family, Vol. 7, Forthcoming.

Available at SSRN: https://ssrn.com/abstract=2920656 Wolfensberger, W. (2012). Advanced issues in social role valorization theory. Valor Press, Ontario