ISSN: 0210-1696
DOI: https://doi.org/10.14201/scero.32216
Robert L. Schalock, Ph.D.
Hastings College. EE. UU.
Recepción: 18 de septiembre de 2024
Aceptación: 3 de octubre de 2024
Abstract: This article defines the characteristics of an inclusive society for people with disabilities and describes three building blocks for developing such a society. These three literature-supported building blocks involve building on a firm foundation; building with a guiding purpose; and building to bring about meaningful systemic change. The article emphasizes that building an inclusive society is a gradual and networked process that involves applying these three building blocks to bring about systemic changes in attitudes, behaviors, laws, policies, practices, and institutions.
Keywords: Inclusive society; people with disabilities; building an inclusive society.
Resumen: Este artículo define las características de una sociedad inclusiva para personas con discapacidad y describe tres bloques para desarrollar una sociedad de este tipo. Estos tres bloques, respaldados por la literatura, implican construir sobre una fundamentación sólida, construir con un propósito orientador y construir para desarrollar un cambio sistemático significativo. El artículo enfatiza que construir una sociedad inclusiva es un proceso gradual y en red que implica aplicar estos tres bloques para desarrollar cambios sistemáticos en actitudes, comportamientos, leyes, políticas, prácticas e instituciones.
Palabras clave: Sociedad inclusiva; personas con discapacidades; construyendo una sociedad inclusiva.
The concept of an inclusive society is not complex, since it involves principles that are both positive and desired by societal members. These principles are based on human and civil rights, a life of quality, and shared citizenship. For most of us, an inclusive society ensures its members full inclusion and participation, is composed of diverse cultures and people, provides societal members with needed physical, financial, and social supports, and values our individual participation and contribution.
The concept becomes complex, however, when an inclusive society envisions membership for ALL people, including those with a disability. Sadly, people with a disability are generally viewed as different, and all too frequently are not provided the opportunities and needed supports to become an equal member of their society. It is for this group of individuals that collectively we need to think about building an inclusive society.
Over the last 50 years, societies throughout the world have begun to think differently about people with a disability, and to incorporate on paper laws, policies, and practices based on the rights of people with a disability. Unfortunately, despite their “rights on paper”, many people with a disability are not afforded real opportunities to live in an inclusive society and express those rights. As a result of this discrepancy between “what should be” and “what is” we are faced with both a question and a task. How do we build a truly inclusive society for people with a disability? This article addresses this question and task.
Although relatively short, the article integrates 40+ years of research and empirically-based knowledge regarding the building blocks of a society that includes people with a disability. Those readers who want to be a part of building an inclusive society will find at the end of the article a list of suggested resources that describe in detail three application strategies. These involve building on a firm foundation, with a guiding purpose, and to bring about meaningful systemic change.
The article begins with a definition of an inclusive society. Understanding this definition is important for two reasons. First, to bring about meaningful change, one needs to begin with the end in mind; and second, if you do not know where you are going, you may end up in the wrong place. Once the goal is clear, subsequent sections of the article describe the three building strategies.
An inclusive society is one that ensures full inclusion and equal access and opportunities; respects diverse cultures and people; values participation and individual contributions; and provides needed supports to societal members. This definition encompasses both the concept of social justice and the three principles of an inclusive society: human and civil rights, a life of quality, and shared citizenship.
Over the last 4-5 decades, significant progress has been made in developing public policies and organization practices that provide the corner stone of an inclusive society: an emphasis on human and civil rights, personal autonomy, inclusion, equity, and empowerment. In addition, over these decades, we have: (a) come to understand the multi-dimensionality of the causes of disability, which involve biomedical, psychoeducational, sociocultural, and justice situations and conditions; (b) implemented a supports-based approach to services; and (c) incorporated an equitable and inclusive approach (i.e., co-engagement and co-production) to individual support planning and research.
Public policy and disability research have encapsulated three goals that should guide the building of an inclusive society that includes people with a disability. These three goals are to enhance human dignity and autonomy, maximize human endeavor, and increase human engagement.
•Human dignity and autonomy involves respect, self-determination, equality, liberty and security, freedom of expression, respect for privacy, and equality before the law.
•Human endeavor involves personal goals, life-long learning opportunities, an array of individualized supports, personal mobility, participation in meaningful activities, and maximum health and wellness.
•Human engagement involves belonging, interdependence, interpersonal relationships, participation in inclusive environments, freedom from exploitation and abuse, and liberty of movement.
The indicators associated with these three goals encompass a robust set of personal and social measures that capture human functioning and the characteristics of an inclusive society. The indicators are also based on published literature regarding the measurement of disability rights, quality of life domains, and shared citizenship indicators.
Bringing about systemic change involves visionaries, organizers, and promoters. Individually, these three change agents play disparate, but complimentary roles. Collectively, the information they impart provides the catalysts for change.
Visionaries communicate both the components and principles of an inclusive society and what the change involves. As described previously, an inclusive society is characterized as providing equal opportunities, being diverse, acknowledging individual contributions, and providing an array of supports. A visionary describes, explains, and provides examples of how building such a society involves changing mental models to embrace the belief that all people have rights; people deserve a life of quality; and all people should engage and participate in all aspects of society. Typically, people with a disability are great visionaries, since they know “what should be”.
The major role of organizers is to ensure widespread understanding and application of the components of an inclusive society. The two mechanisms for such are the diffusion of an innovation and the use of best practices.
The diffusion of innovation. Considerable research has shown that the diffusion of an innovation, such as the concept of an inclusive society, involves a systematic process that includes:
1.Knowledge of the characteristics and principles of an inclusive society. Knowledge incorporates the understanding that disability is a natural part of human diversity that emerges from dynamic processes between individuals and their environments.
2.Persuading policy makers, funders, service/support providers, and persons with disabilities and their families to become involved in the diffusion and systemic change process.
3.Deciding to adopt the concept of an inclusive society at both the policy and practice level.
4.Implementing best practices to facilitate building an inclusive society.
5.Confirming the impacts on personal outcomes of being a member of an inclusive society.
The use of best practices. Best practices are defined as the application of evidence-based knowledge. Over the last few decades, researchers have identified a number of best practices compatible with bringing about an inclusive society. Six of the most relevant involve:
1.Utilizing person-centered thinking regarding the assessment of adaptive skills, intellectual functioning, and needed supports; operationalizing and applying an array of individualized supports; conducting person-centered outcome evaluation; and using equitable and inclusive research practices.
2.Implementing an array of individualized supports to address the support needs of individuals with a disability. This array involves personal assistance, advocacy, health-related, technology, prosthetics, skill development, and reasonable accommodation.
3.Incorporating an integrative perspective in developing a person-centered service and support system. The integrative perspective involves biomedical, psycho-educational, sociocultural, and justice risk factors, and perspective-related individualized interventions and supports to ameliorate or lessen the risk factor(s).
4.Making data-based decisions regarding the definition, diagnosis, classification, and intensity of needed supports.
5.Empowering individuals and families to co-engage and co-produce.
6.Networking and collaborating to facilitate diffusion processes related to knowledge, acceptance implementation, and confirmation of systemic changes.
A promoter is not who one is, but what one says and how it is said. A promoter must be an optimistic salesperson who needs to convince a frequently skeptical audience that the power is in the message, and that the message has an important impact on a wide constituency. That heterogeneous constituency consists of people with disabilities and their families, policy makers, funders, service/support providers, and the general public. Thus, a promoter needs to share the vision of an inclusive society and its characteristics; describe how the implementation of the vision requires both a systematic diffusion process and best practices; and that the results of the vision, diffusion, and best practices process have a positive impact on both individuals and society. That positive impact is lived out through people with a disability experiencing enhanced human dignity and autonomy, human endeavor, human engagement, human and civil rights, quality of life, and shared citizenship.
Across these positive personal outcomes, promoters should also point out the power of mental models and how they determine how people think and view the world; describe, with examples, the potential of people with a disability; discuss the individual and societal benefits of all people living in an inclusive society; and emphasize the value of shifting from a zero-sum society in which someone wins and someone loses, to a positive-sum society in which people are accepted for who they are, engage with others in meaningful ways, and are fellow citizens.
Miguel de Cervantes (The Man from Castilla La Mancha) once said (in the 1600s) that, “One must live life in a genuine way, passionately, in spite of what others think”. It is from this quote and this attitude that the word quixotic comes. Definitionally, quixotic is the quality of being a dreamer. Today, some may think that an inclusive society for all people is only a dream, and that for whatever reason, people with a disability cannot fully participate in ‒and be a contributing member of‒ one’s society. Others who are reading this article may feel differently.
The goal of this article has been to provide a description of doable strategies to build an inclusive society. The author recognizes full well that building such a society is a gradual and networked process that involves systemic changes in attitudes, behaviors, laws, policies, practices, and service/support providers. As reflected in the strategies described in the article, the process of building an inclusive society is facilitated by understanding the characteristics of such a society; building based on a firm foundation and guiding purpose; and building to bring about meaningful systemic change through networking with visionaries, organizers, and promoters. The net result of such a process can be more than just a dream.
Buntinx, W. H. E., Yu Tan, I. and Aldenkamp, A. P. (2018). Support values through the eyes of the patient: An exploratory study into long-term support of persons with refractory epilepsy. Epilepsy and Behavior, 82, 155-163. https://doi.org/19.1016/j.yebeh.2018.02.031
Claes, C., Schalock, R. L. and van Hove, G. (in press). The components and use of a shared citizenship measurement model. Journal of Policy and Practice in Intellectual Disabilities.
Claes, C., Vandenbussche, H. and Lombardo, M. (2016). Human rights and quality of life domains: Identifying cross-cultural indicators. En R. L. Schalock and K. D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of persons with intellectual disability (pp. 167-174). AAIDD.
European Commission. (2021). Union of equality: Strategy for the rights of people with disabilities 2021-2030. Publication Office of the European Commission.
Lombardi, M. (in press). Towards an operational definition of supports, systems of supports, and elements of a system of supports. Evaluation and Program Planning.
Luckasson, R., Schalock, R. L. and Bradley, V. J. (2024). Diffusion of the shared citizenship paradigm: Strategies and next steps. American Journal of Intellectual and Developmental Disabilities, 129, 362-376.
Luckasson, R., Schalock, R. L., Tasse, M. J. and Shogren, K. A. (2022). The intellectual and developmental disabilities Shared Citizenship Paradigm: Its cross-cultural status, implementation, and confirmation. Journal of Intellectual Disability Research, 67, 64-76.
Rogers, E. M. (2003). Diffusion of innovation (5th ed.). Free Press.
Schalock, R. L. (in press). Intellectual and developmental disabilities: Best practices and anemerging integrative paradigm. In G. Bennett and E. Goodall (Eds.), The Palgrave Encyclopedia of Disability. Springer Nature.
Schalock, R. L. and Keith, K. D. (Eds.). (2016). Cross-cultural quality of life: Enhancing the lives of persons with intellectual Disability. American Association on Intellectual and Developmental Disabilities.
Schalock, R. L., Luckasson, R. and Tasse, M. J. (2021a). Intellectual disability: Definition, diagnosis, classification, and systems of supports (12th Ed.). American Association on Intellectual and Developmental Disabilities.
Schalock, R. L., Luckasson, R. and Tasse M. J. (2021b). Ongoing transformation in the field of intellectual and developmental disabilities: Taking action for the future. Intellectual and Developmental Disabilities, 59, 380-391.
Schalock, R. L., Luckasson, R., Tasse, M. J. and Shogren, K. A. (2022). The IDD paradigm of shared citizenship: Its operationalization, application, evaluation, and shaping for the future. Intellectual and Developmental Disabilities, 60, 426-443.
Schalock, R. L., Thompson, J. R. and Tasse, M. J. (2018). A systematic approach to personal support plans. AAIDD.
Shogren, K. A., Luckasson, R. and Schalock, R. L. (2021). Leveraging the power of context in disability policy development, implementation, and evaluation: Multiple applications to enhance personal outcomes. Journal of Disability Policy Studies, 31, 230-243.
Stancliffe, R. J., Arnold, S. R. C. and Riches, V. C. (2016). The supports paradigm. In R. L. Schalock and K. D. Keith (Eds.), Cross-cultural quality of life: Enhancing the lives of persons with intellectual Disability (pp. 133-142). AAIDD.
Thompson, J. R., Schalock, R. L., Agosta, J., Teninty, L. and Fortune, J. (2014). How the supports paradigm is transforming service systems for persons with intellectual and related developmental disabilities. Inclusion, 2, 86-99. https://doi.org/0.1352/2326-6988-2.2.86
Thompson, J. R., Schalock, R. L., Shogren, K. A., Tasse, M. J., Wehmeyer, M. L. and Hughes, C. (2023). Support Intensity Scale-Adult Version, user’s manual (2nd Ed.). AAIDD.
Thompson, J. R., Wehmeyer, M. L., Hughes, C.., Shogren, K. A., Seo, H., Little, T. … Tasse, M. J. (2016). Supports Intensity Scale—Children’s Version (SIS-C). Interview and profile form. AAIDD.
United Nations. (2006). Convention on the Rights of Persons with Disabilities. https://www.in.org/disability/convevtion/convention.shtml
Universal Declaration of Human Rights. (1948). The UN Declaration of Human Rights (UDHR). United Nations General Assembly.
Verdugo, M. Á., Gómez, L. E., Schalock, R. L. and Navas, P. (2023). A systematic approach to implementing, evaluating, and sustaining the shared citizenship paradigm. Behavioral Sciences, 13. https://doi.org/10.3390/bs/13120970
Verdugo, M. Á., Schalock, R. L. and Gómez, L. E. (2023). The quality of life supports model as a major component in applying the quality of life framework. Journal of Policy and Practice in Intellectual Disabilities, 21(1), 12468. https://doi.org/10.1111/jppi,12468