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The Elusive Goal of Inclusion (Brink)

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April 24, 2022

The Elusive Goal of Inclusion (Brink)

By Satya Brink, PhD

Merriam Webster defines inclusion as “the act of including and the state of being included”. The social construction of the concept of inclusion has evolved depending on the context of the time. But questions still remain.  Who does the including? Who are being included? How is inclusion promoted? Enforced? What are the impacts of inclusion?  Is exclusion the lack of inclusion or a separate problem? Is inclusion the same as integration and if not, what is the difference? It is worth using an example to look at the changing meaning of inclusion and to consider the progressive evolution of the concept.

In the early nineteen hundreds the average human life span was only 47 years. Injured or infected people did not survive. By the 1950s medical care improved the mobility of amputees after the two world wars.  Victims of accidents survived and were rehabilitated due to assistive technology and prosthetics. Modern medicine improved survival rates after birth defects, spinal cord injuries, muscle diseases and nerve disorders.

A couple of decades after the second world war, persons with disabilities and older persons were no longer small hidden minorities. Health focused more on function and wellness. It was accepted that a person with disabilities could be healthy and function independently given the right support.  Aging could reduce physical abilities but older people could retain their autonomy and age in place in their own homes. Morality underpinned the idea of inclusion of “vulnerable people”.

In the 1960s, the ‘accessibility for persons with disabilities’ movement was initiated. It got a boost from the publication of “Designing for the Disabled” by Selwyn Goldsmith in 1963. The immediate and most visible problem for people with disabilities was the environment and barrier-free design was the response.  Though it began among design professionals it became a goal in particular for cities that started installing curb cuts and ramps.

Barriers were generally deemed to be architectural, design or physical conditions which hindered equal access by persons with an impairment or diminished function.  Access was associated with movement in the living environment, particularly for persons with disabilities. In Canada, accessibility was mentioned for the first time in a Supplement to the Canadian National Building Code in 1965, entitled “Building Standards for the Handicapped”. The effort was to “create barrier-free access along a path of travel designed for use by persons with physical and sensory disabilities”, particularly those using wheelchairs and other mobility aides. It was not until 1975 that the Canadian National Building Code incorporated accessibility into the code and only later in 1985, added Section 3.7 which dealt exclusively with accessibility of public buildings and spaces (Hanson, 1985).

A new field of Man Environment Relations created momentum in the seventies as there was a demand for design and research expertise. Man-Environment Relations focused on the interactions and feedback between the human and environmental components in everyday life.  It initiated a shift from environmental determinism to creating enlarged possibilities.  This was associated with the principle of accessibility which broadened both the concept of access and of users. Accessibility was defined as the design of products, devices, services or environments for people who experience a variety of disabilities. The mantra was that properly designed environments could not only compensate for but even overcome disability limitations.

The Canadian Charter of Rights and Freedoms was passed in 1982. Section 15.1 states “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.”  It clearly states the illegality of discrimination based on physical disability. The mention of age, though specified, can be any age including older persons, but did not have the same equal benefit impact.  For instance, while there have been multiple legal cases launched by persons with disabilities, cases dealing with older persons are not as common.  Though the intention is to guarantee the rights of citizens with specified characteristics, such people are often required to redeem such rights by court challenges. Still, the Charter led to considering the practice of inclusion an indicator of democratic society.

The Canadian Standards Association first published the Standard B651 in 1990 as Barrier-Free Design. A revised version B651-18 was published as Accessible Design for the Built Environment, 2018. This standard published requirements for making buildings and other facilities accessible to persons with a full range of impairments including mobility, manipulation, sensory (including hearing and visual and cognitive) impairments.

When persons with disabilities and older persons joined forces, there was a large and vocal advocacy group demanding the opportunity for independent living and community participation. In order to stress that their numbers are not inconsequential, the term TAB or “Temporarily Able Bodied” was used as a reminder that disability can affect any person at any time. Living normally with a disability was not unusual. It was a push for more inclusive action and language.

The break from separate and special design to something more inclusive began with the idea of universal design.  The architect Ron Mace coined the term universal design to describe the idea of designing all products and man-made environments to be usable to the greatest extent possible by every user regardless of their age, ability or status in life without further adaptation or specialized design. This was a major deviation from designing for the average (usually male) user, to designing for the largest distribution of users possible. In other words, the idea was to promote independent functioning of all users in their living environment.

In 2017, a national survey found that 22 percent or one in five Canadians over 15 had one or more disabilities. So, some 6 million persons with disabilities would benefit from inclusive policies (Statistics Canada, 2017). Rules of thumb were developed to calculate the types of people who would benefit. It was generally believed that older people represent about 40 per cent of the population with disabilities and more than a third of people 65 and over had disabilities. These types of data helped to split both the beneficiaries and the types of support required, such as for employment, income assistance and appropriate environmental design.

The tendency to focus on types of users rather than need continued though the goal was to promote “integration rather than segregation”. In 2002, the World Health Organization announced that population aging was a global “demographic revolution”.  Infrastructure for health, housing and care would be overwhelmed in countries if they did not promote “active aging”. Active aging was a process to optimize health, autonomy and participation in order to enhance the quality of life as people age. The goal of Active Aging was that as people age, they should be able to continue to participate in all spheres of life – social, cultural, civic, spiritual and economic (WHO, 2002). Associations for retired or aging people were actively engaged as the goals reflected their desire to age in place while leading active lives.  They promoted the idea that “you are only as old as you feel” and presented ways in which people could lead active and involved lives in old age.

Since the majority of older people live in cities and are likely to do so for the foreseeable future, a noticeable segment will grow old in the urban environment requiring appropriate municipal policies and expenditures. The World Health Organization developed the Global Age-Friendly Cities Project in 2006, creating a network of cities that would respond positively to their aging population and promoting active aging. A livable city should be a good place to raise families but also to age, with fitting choices for housing, health and social services, transportation and public amenities such as parks and libraries for all residents (WHO, 2007).  Currently, there are 1,333 Age-Friendly cities and communities in 47 countries (WHO, No Date)

The rejection of the view that older persons are a societal burden is still only partially achieved. The idea that older persons are a valuable resource as tax payers, volunteers and participating citizens is still a relatively new rationale for cities to ensure their inclusion by the provision and access to built and natural spaces, public structures and amenities and public, commercial and other services. Inclusion began to take on a more functional role. Human centred design was suggested including equitable use, flexibility use, simple and intuitive use, perceptible information, tolerance for inaccuracy and error, low physical effort and size and space for approach and use. The three impact indicators suggested were equity (measured through comparisons between older persons and persons with disabilities and the total population), accessibility of the living environment and inclusiveness of the social environment.

The same year, 2006, the UN passed the Convention on the Rights of Persons with Disabilities (CRPD) and there are 82 national signatories to the convention. It aimed to improve social attitudes “from viewing people with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing such persons as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being members of society”. But the primary value was that the convention provided national governments with a framework for national laws for rights of persons with disabilities, protecting them from any form of discrimination and assuring them of equal status as citizens. This was a vital step which transformed or even replaced the policy goal of inclusion with explicit equal rights of citizenship and fundamental freedoms under protection of the law (United Nations, 2006).

Not all groups at risk of needing to be included or experiencing lower outcomes compared to the majority populations have such specific protection. Though this proven legal approach has provided strong protection to persons with disabilities, it does little to protect other minority religious, ethnic, and indigenous groups facing exclusion or marginalization. For instance, persons with disabilities who were older, regardless of the age of onset of the disabling condition were protected under the act, but not the two thirds of older people who were not disabled.

Many older persons were not as equally protected as other citizens during the recent years of the pandemic.  In Canada and elsewhere, older persons, especially if fragile, experienced difficult living conditions, worsening health and declining care as well as much higher rates of illness and death from Covid. This result was ascribed to discrimination though this negative mechanism resulting in inequities, is forbidden in many countries. In response, the World Health Organization released the “Global Report on Ageism in 1921. In addition, the United Nations has been working over the past ten years to pass a Convention for the Rights of Older Persons and only now has begun to draft one. The convention for persons with disabilities has served as a model for the achievement of a fair and equitable society of diverse people in a country through national laws.

For decades, nations have worked to achieve inclusion through soft policies, but this approach has now been superseded by the demand for equal rights.  Current context and pressures may provide the impetus.  As the population ages, the working age population has begun to shrink and there is a threat of a labour shortage. There are initiatives to encourage older people to work longer and retire later. Job fairs and recruiting drives are held for persons with disabilities, autistic people and other marginal groups to increase their access to employment. Minority groups are provided more training and labour market opportunities. This has increased the policies of “accommodation” for all citizens, rather than legal protection for one group at a time.

In 2019, Canada passed the Accessible Canada Act, also known as An Act to Ensure a Barrier Free Canada. Among the goals in the Accessible Canada Act are:

  • everyone must be treated with dignity
  • everyone must have the same opportunity to make for themselves the life they are able and wish to have
  • everyone must be able to participate fully and equally in society

The overarching purpose of the Accessible Canada Act is to make Canada barrier-free by January 1, 2040 to ensure equal participation of all citizens in society.  Universal design principles that provide the least restrictions for the most people is attractive because of the huge benefits of an autonomous and productive citizenry. Though the terminology reflects much earlier thinking regarding barriers, the scope is much wider. Barriers include any physical, architectural, technological, social or attitudinal barriers that hinder full and equal participation in an enlarged list of priority areas under federal jurisdiction. This includes identifying, removing and preventing such barriers in:

  • employment
  • the built environment (buildings and public spaces)
  • information and communication technologies
  • communication, other than information and communication technologies
  • the procurement of goods, services and facilities
  • the design and delivery of programs and services, and
  • transportation (airlines, as well as rail, road and marine transportation providers that cross provincial or international borders) (Government of Canada, 2019).

What remains to be done to ensure equal participation of all citizens in society?  How can equality of participation and equity of results among citizens be assured? Predictions for the future are notoriously unreliable however, there are some suggestions, ranging from practical to ideal.

  • Research on universal design of environments, products, processes and policies:  Universal design ensures maximum usability for citizens, regardless of personal characteristics or stage of life.  This has given rise to movements such as 8-80 cities where the design of public spaces makes them usable by people both 8 and 80 years old in order to improve the quality of life for all residents. Maximum flexibility and adaptability are provided by the maxim “loose fit design”.  There are, however, some caveats. There are some policies and services that serve the needs of specific clients – such as palliative care or homeless shelters.  So, it is important to supplement universal design provision.  However, these special services should satisfy the needs of a specific group without disadvantaging others as well as they should reduce the risk of the negative impact of universal solutions and strategies on this specific group even if they work for other groups.
  • Better evidence based on data:  There are four ways in which data can be improved to provide necessary evidence.  First, to collect data with similar detail for all population groups in a diverse society.  For instance, though almost one in five Canadians are 65 and over, the population 65 to 100 years is poorly sampled and aggregated results are reported for people 65 and over in many national surveys. Second, more geocoding.  It is important to match services to the needs of people dispersed within settlements. Services may be unavailable, too far, or difficult to access. Rural areas may be inadequately served while cities may underserve areas where there is a high demand for services. Geocoding can help with matching demand in geographic space. Though initial effort and cost may be high, once all housing and service institutions have been geocoded, only annual new-built housing and startup institutions will need to be added to the data base. Third, social geography data could better support indicators of progress such as equity in a wide range of institutions and environments.  Data should help to distinguish between positive ethnic enclaves and segregation of the poor in deprived neighbourhoods. Fourth, the frequency of data collection may require recalibration.  With shifts in needs due to population aging and migration, data may need to be updated more frequently to ensure adequate provision and evaluation of outcomes of the supports.
  • Technology can be incorporated into design solutions: Captioning and hearing loops for people who are deaf and audio messaging and recorded books for the blind have made a difference. However, popular digital gadgets such as mobile phones have not always been well designed and many users struggle with small screens and tiny buttons too difficult to see or manage. The use of on-line services is making digital gadgets an important link to society.
  • A measure of needs that reflects reality: A more accurate, flexible, and multimodal needs assessment tool is required for estimation and planning. Just counting each type of need separately is inadequate.  A more sophisticated model is necessary which may result in grouping of some policies and services. Furthermore, environments change with time too, so they need to be periodically re-evaluated.

Stratifying citizens into groups is a blunt instrument for measuring needs.  Clustering people into lower status or needy groups may cause the formation of social hierarchies and of discrimination targets.

The use of individual characteristics is an unreliable strategy because needs are not stable. Changes over time can arise from recent cases, multiple needs, variations and patterns of dispersion. Some needs are not visible such as the lack of stamina or immune disorders. Furthermore, no two individuals are certain to experience the same disability in the same way.  An individual is likely to experience a disability differently depending on the time of onset in the life course, medical advances, environmental improvements and growth/decline in personal adaptions.

  • A conscious mindshift from life stages to life course thinking: Because earlier outcomes impact later ones in life, it would be desirable to consider the needs across the life course to ensure continuity of desirable outcomes throughout life. It requires a change in paradigm for public acceptance of the fact that individuals will consume services and contribute to society at different rates through life. The principle of “contributive justice”, matches a person’s obligations with his or her capabilities and role in society (Sandel, 2020). Investing in individuals as societal assets throughout life means that their growing value can experience dips and peaks in their life time.

Nation building is a work in progress. The process is facilitated only if every citizen has the right to participate and contribute to society.  Progress has been made on the goal of inclusion on the road to an equal society, but exclusion continues to lurk.

References

Goldsmith, S. 2007. Universal design. UK: Routledge.

Government of Canada. 1982. The Canadian Charter of Rights and Freedoms. Ottawa.

Government of Canada. 2019. An Act to Ensure a Barrier-free Canada (Accessible Canada Act). Ottawa.

Hanson, A.T. 1985. Accessibility requirements in the National Building Code of Canada. Building Practice Note 1985-06-01. Ottawa: National Research Council.

Morris, S., Fawcett, G., Brisebois, L. and Hughes, J.  2018. A demographic, employment and income profile of Canadians with disabilities aged 15 years and over, 2017. Ottawa: Statistics Canada.

United Nations. 2006. UN Convention of Rights of Persons with Disabilities (CRPD). New York: UN.

Sandel, M. 2020.  The tyranny of merit: What’s become of the common good? New York: Farrar, Straus and Giroux.

World Health Organization (WHO).  No date.  About the Global Network for Age-friendly Cities and Communities. Age friendly world website.  https://extranet.who.int/agefriendlyworld/who-network/

World Health Organization (WHO). 2002. Active Ageing: A Policy Framework. Geneva: World Health Organization.

World Health Organization (WHO). 2007.  Global age-friendly cities: A guide. Geneva: World Health Organization.

World Health Organization (WHO). 2021. Global report on Ageism. Geneva: World Health