Designing WITH children with disabilities

by Mary Ann Jackson & Ilianna Ginnis

Mary Ann Jackson is a built environment accessibility specialist and director of transdisciplinary consultancy Visionary Design Development Pty Ltd. An architect, urban planner, and access consultant, her work and PhD studies revolve around the disability-built environment intersection.

Ilianna Ginnis is an interior architectural designer at Studiomint, a PhD candidate and a research officer/ teaching associate within the Design Health Collab at Monash University. Her focus is to bring communication access into architecture and spatial design. Ilianna is also a qualified disability support worker, assisting people who have diverse support needs.

According to UNICEF, globally, there are approximately 240 million children with disabilities. Research confirms children with disabilities requiring additional support experience multiple disadvantages and exclusions. One of the main contributors to exclusion, worldwide, is poor accessibility. Whilst accessibility improvement solutions often defer to regulatory standards of physical, sensory and wayfinding and, more recently, web content, poor accessibility also significantly impacts children with diverse communication and cognition needs. A main arena for inaccessibility is the built environment. The built environment includes all the structures and environments in which people work, live and play. By definition, all built environments are people-instigated. But what happens when the built environment is the barrier? When children with disabilities are unable to access and/or fully participate within built spaces, ‘built environment practitioners’ (as defined by Jackson, 2018) are, albeit unconsciously, tacitly contributing to an ongoing cycle of social and educational exclusion. Designing built environments to be universally accessible is the minimum. Further consideration of how to facilitate active participation and inclusion of children with different needs, strengths, and abilities can better inform built environment practitioners’ approach to procurement, design, and delivery of spaces and places. The following, brief, thought-piece brings together some insights from two PhD candidates examining built environment design through the lens of working together with people with disabilities, not, for people with disabilities’ representatives. Enabling built environment design that enriches the lives of children with intellectual disability who communicate non-verbally is a particular interest of one of the authors.

DISABILITY

The concept of 'disability is evolving. For example, previously older social models involving Charity/Institutional and medical models have highlighted the 'societal othering' of people through exclusion from society with the perceived former intent of confinement and 'treatment of people. Historically, built environment practitioners have neither been called to account nor accepted responsibility for the compounding effects of our professionally socialised tacit knowledge, ie, ingrained ways of thinking/doing, and human impairment. On the other hand, the Social model of disability recognises the built environment as a disabling instrument in itself. The UN Convention on the Rights of Persons with Disabilities (UNCRPD), reflecting the Human Rights model of disability, does not define disability but rather, states:

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

Therefore, ‘disability’ is not only physical, intellectual and neurodevelopmental conditions are also, potentially, disabling particularly within unaccommodating environments. Intellectual disability refers to a range of conditions that affect the development of the brain. Children may be developmentally delayed which may affect communication. Many children with disabilities also experience speech and language impairments and, as a result, are non-verbal or minimally verbal.

COGNITIVE AND COMMUNICATION ACCESS IN THE BUILT ENVIRONMENT

All humans absorb and transfer implicit learnings through a transformative ‘sign-process’ involving multiple, complex, conscious, subconscious, and unconscious observations, ie, an indeterminable amalgam of perceptual-manipultive and symboliccognitive processes engenders ‘tacit knowing’.

We all communicate with each other in a kind of shorthand, through a range and combination of signifiers, written and graphic, verbal and non-verbal. Nonetheless, in the accessibility community context, non-verbal communication is an alternative form of communication often used by people with intellectual disabilities, particularly children with intellectual disability. The forms of communication can be gestural, behavioural, AAC (alternative augmentative communication), vocalisations, and personal behaviours. Based on cognitive capacity and receptive and expressive language abilities, each individual communicates differently. Communication is, therefore, widely diverse. Children with disabilities unable to easily use mainstream communication channels require support to translate their needs and desires (Van Rijn, 2012).

The built environment operates in a neuro-ableist manner (Huijg, 2020), meaning it (as an actor with agency in the wider socio-ecological system of humans+environment) prioritises speech and typical forms of communication and development. Additionally, the built environment has little to no consideration of the communication needs of children with disabilities and as a result, nonverbal children go unheard and unseen. This is evident in many ways. Firstly; children who are non-verbal and have intellectual disability are not included in design processes and conversations of access, secondly; there is little knowledge amongst built environment practitioners of nonverbal communication and cognition and thirdly; guidelines are not designed to take children who are non-verbal into consideration. Therefore, there is no minimum standard or mandatory form of inclusion. As a result, children with disabilities who are non-verbal and cognitively diverse struggle to participate in the program(s) offered by/through the current built environment.

Being in unwelcoming spaces for lengthy periods is often difficult due to the likelihood of oversensory stimulation, particularly where sensory/ quiet rooms (designed to assist in regulating the effects of over-stimulation) are not provided. Many supermarkets and shopping centres have designated quiet times, ostensibly to assist inclusion of cognitively diverse children. This,

however, often leads to segregation rather than inclusion. Furthermore, such management interventions do not address the underpinning issue of decades of unthinking built environment practice being inconsiderate of people with disabilities’ needs, wants, and desires (Rajapakse, et al., 2019). Creating a design process recognising children with disabilities as the main protagonists begins to break down traditional communication structures (which are based on explicit knowledges) enabling children to communicate their needs the way they want to communicate (Ginnis, 2021).

FACILITATING INCLUSION FOR CHILDREN WITH DISABILITIES

Including children with diverse disabilities and, more particularly, children with intellectual disability who communicate non-verbally, within the design process is therefore critical. By firstly interacting with children with disabilities in the spaces and places they currently inhabit and secondly specifically including children with disabilities in the design process, built environment practitioners will become more aware of the needs of a very under-served demographic who, most certainly, do not fit the ‘normate template’ (Hamraie, 2017). Including children with disabilities in design processes, thereby better enabling ‘fit’ rather than ‘misfit’ (Garland-Thomson, 2011), can tackle social isolation and discrimination in the many areas in which we all work, live and play. For instance, by integrating accessible swings into a park design and by installing communication boards, pictorials, and/or other responses to multisensory needs, designers are able to empower children with disabilities to use and enjoy public space. Such visible features also educate other children (and adults) on the importance of inclusion and diversity. By responding to the diverse needs of children in public shared environments, the built environment, as an actor-agent, can begin to engender empathy more broadly.

However, it is not simply adding an accessible swing and communication board into the local park which is needed. Deeper ongoing relationship building across all sectors (ie, public, private, not-for-profit, and academic), cross-disciplinary conversations, and meaningful engagement directly with people with disabilities are all crucially required to activate change to profoundly ingrained professionally socialised norms.

Developing processes that include children with disabilities at the beginning, middle, and end can have an enormous impact on an outcome. The challenge is, however, how to make these processes both inclusive and mainstream architectural and design language? Developing processes where children with disabilities, regardless of their strengths and abilities, can participate is essential. Such processes include workshops and activities, offering choice and control, and ethnographic processes where children with disabilities and families teach designers their way of life as well as personalisation where designers cater to the specific likes and interests of children with disabilities.

Figure 1: Alternative and Augmentative communication app. Photo: Ilianna Ginnis

Figure 2: Behaviour as communication modelling and sharing. Photo: Ilianna Ginnis

In addition, and often overlooked, ongoing evaluation throughout the process is critical. More robust ‘monitoring and evaluation’ procedures will enable built environment practitioners to more easily reflect on the success, or otherwise, of built outcomes. Children with disabilities, families, representatives, and allied health support workers must all be enabled to contribute and comment at all stages from procurement, through design, to delivery, completion, and beyond on whether project outcomes meet needs and/or what further supports are required. It is only with such deliberate processes in place that built environment accessibility for non-verbal children with intellectual disability will be improved.

REFERENCES

Garland-Thomson, Rosemarie, 2011. Misfits: A Feminist Materialist Disability Concept Hypatia, Vol.26 (3), p.591609 Malden, USA: Blackwell Publishing Inc.

Ginnis, Ilianna. ‘Re-Imagining Communication Access in Design’, Parlour, 24 May 2021. Accessed 14 August 2022.https://archiparlour.org/re-imaginingcommunication-access-in-design-practice/.

Hamraie, Aimi, 2017. 'Normate Template: Knowing-Making the Architectural Inhabitant', Building Access: Universal Design and the Politics of Disability. Minneapolis, MN, Minnesota Scholarship Online, https://doi.org/10.5749/ minnesota/9781517901639.003.0002, accessed 13 Aug. 2022.

Huijg, Dieuwertje Dyi. "Neuronormativity in theorising agency: An argument for a critical neurodiversity approach." In Neurodiversity Studies, pp. 213-217. Routledge, 2020.

Jackson, Mary Ann, 2018. Models of Disability and Human Rights: Informing the Improvement of Built Environment Accessibility for People with Disability at Neighborhood Scale? Laws, 7(1), 10. https://doi. org/10.3390/laws7010010

Rajapakse, Ravihansa, Margot Brereton, and Laurianne Sitbon. "A respectful design approach to facilitate codesign with people with cognitive or sensory impairments and makers." CoDesign (2019).

Van Rijn, Helma. "Meaningful encounters: Explorative studies about designers learning from children with autism." (2012). Figure 3: engagement with environment and interests. Photo: Ilianna Ginnis

Figure 3: engagement with environment and interests. Photo: Ilianna Ginnis

Figure 4: Objects as a form of communication. Image: Ilianna Ginnis

Figure 5: MPavilion Workshop “Cognition in Design Practice” Ilianna Ginnis and Dr Kanvar Nayer host an empathy workshop educating people about non-verbal and alternative communication needs. Image: Lee-Marie Nayer.