Chapter 4: Inclusive design, sustainability and ethical concerns
“[Often] people who make software don’t have intuition about how to make it accessible. Putting a blindfold on does not give you intuition about what works for someone who is blind. […] You really need to understand what does and doesn’t work.”
Dr Vint Cerf ForMemRS speaking at the Royal Society’s event marking the 50th anniversary of the Internet in 2024.
Developing DigAT which serves the needs of disabled people to a high standard will require the engagement of disabled people throughout the design process. This applies to both DigAT designed specifically for disability access as well as ‘mainstream’ technologies (eg smartphones, laptops, game consoles). These stages include the initial consideration of the minimum viable product, the development and testing stage, the business model and post-release. This need for meaningful engagement of disabled people was a theme which arose in many of the research activities conducted for this report.
Beyond engagement on the technical features of new digital technologies, there is a need to address challenges associated with the affordability and environmental sustainability of these products. A key challenge is the nature of digital technologies to quickly become obsolete as new innovations arise or as providers cease to exist. Another is the relationship between disability and income, with many disabled people experiencing lower levels of income compared with non-disabled people. According to an estimate by the World Health Organization, nearly 80% of disabled people live in low- and middle-income countries (). In the UK, it is estimated that disabled households make up 48% of all people living in relative poverty and that they are three times more likely than non-disabled households to use a foodbank ().
The challenge on environmental sustainability is to address technology abandonment and ensure that the proliferation of DigAT products minimises the impact on electronic waste (e-waste). From 2010 to 2022, it is estimated that the amount of e-waste generated globally has increased from 34 billion kilograms to 62 billion kilograms, with the e-waste generation outpacing recycling by a factor of five (). E-waste can have health, as well as environmental, consequences and is defined as electrical and electronic devices which are discarded as products break or become obsolete ().
Drawing on insights from workshops, roundtables and focus groups conducted for the report, this chapter outlines barriers to inclusive design, challenges related to technology transience and the potential of circular economy schemes for DigAT. Finally, it covers broad ethical concerns which cut across various aspects related to development of DigAT, including privacy concerns and informed consent.
Barriers to inclusive design and deployment of DigAT
The following ten key barriers to the effective and inclusive roll-out of DigAT have been identified:
- Data scarcity
The effective development of DigAT applications requires high quality data on the prevalence of different types of disability and the nature of people’s functional challenges (). This is useful for both considering the products or applications which need to exist, as well as the potential business case for investment in their development. However, there are mixed views on whether data on the number of potential disabled customers should form part of a business case for a DigAT product, as an application developed for disabled people can be adopted by all users or customers (eg subtitling on television programmes) ().
- Lack of standardisation
Standardisation of definitions, products and protocols is a challenge across digital technologies in general and applies for DigAT. There are different definitions and measurements of disability globally and the quality of data on disability varies greatly. This lack of consistent data on disability globally can impact investment decisions by companies and developers ().
Some products are not interoperable (eg accessible controllers for gaming do not work across all consoles) and are not labelled as accessible in a consistent way for users to be able to compare and contrast. A lack of open protocols means that existing DigAT products disabled people have may not be able to communicate with each other effectively or transfer a user’s experiential data.
- Inclusivity as an afterthought
The development of DigAT applications which have high utility and do not reinforce existing challenges is hindered by a failure to meaningfully engage disabled people in the design of these applications at the outset (). A typical minimum viable product for a new technology application does not include requirements related to accessibility for disabled people. For example, digital interfaces in electric vehicles do not sufficiently consider the needs of disabled users (). It is often the case that design input from disabled people happens retrospectively leading to products not being fully optimised for their needs (). For example, research has argued for active involvement of physically disabled people in the development of immersive platforms to ensure inclusivity ().
- Weak understanding of the economic value of accessible products
The economic case for investing in accessible products can be challenging to make within technology companies (). Investing in accessible features can be seen to be appealing to a niche segment of a market rather than something which benefits the broad customer base. Where investment is made in accessibility, it can often be driven by disabled people themselves, working within the company rather than a decision led by those without lived experience of disability (). As such, many developers may fail to see an economic driver for investing in DigAT products.
- Disconnect between primary technology developers and assistive counterparts
Where a failure on accessibility exists, some developers may create DigAT applications or products to work with another, potentially mainstream, product. An example is a third-party speech recognition app for a smartphone. The usability of these applications depends on the economic sustainability of the developer, which may be a small or medium sized enterprise, as well as continued synergy with the main product (). Poor synergy between third-party app developers and smartphone providers may mean applications lose utility or become unusable over time (eg after a software update) ().
- Awareness and training
Many DigAT tools are underutilised, in part, due to a lack of awareness amongst disabled people and carers about their existence or an understanding of how they work (). DigAT featured on mainstream devices may require set-up by someone else before they can be used by a disabled person. Furthermore, technology developers do not necessarily provide instructions in accessible formats, making their use cumbersome to achieve. There may also be a lack of awareness and training amongst organisations who provide services for disabled people such as libraries or care homes ().
- Feature integration
As disabled people are more likely to be in lower income households, integrating DigAT features into mainstream devices (eg smartphones, televisions) is likely to be the most cost-efficient method for DigAT adoption. The lack of integration means disabled people may rely on paying for expensive, standalone, DigAT devices or be unable to afford them altogether and be excluded from a service or activity (), ().
- Cost
Beyond the cost of purchasing a DigAT device or application itself, disabled users face challenges related to the cost of broadband, mobile data, device repair and upgrades. If the costs are covered by a carer, it may lead to reduced expenditure on other important business or personal expenses (). Due to disabled people being more likely to fall in low-income brackets with little disposable income, this may further reinforce views among developers that catering for disabled people does not provide sufficient return on investment.
- Obsolescence and technology transience
Technology transience refers to the temporary nature of digital technologies due to products quickly becoming outdated or altogether obsolete. In the context of DigAT, obsolescence can cause disruption for disabled people as well as financial uncertainty for DigAT developers (). Disabled people may therefore be required to purchase different versions of the same product multiple times over the course of their life. The degrading utility, or total discontinuation, of products can act as a disincentive to adopting DigAT tools and foster ill feeling towards their use. Mechanisms for repairing DigAT applications need to be feasible, affordable, and come with accessible customer support in both digital and analogue formats ().
- Breadth of data formats required
The design of some DigAT applications requires a breadth of multi-modal datasets (ie images, video, audio, location) which can be both expensive to collect, maintain and apply. An application which notifies a deaf person when a baby is crying, for example, would require audio datasets of babies crying in different settings, to be accurate and effective. If these types of training datasets do not already exist, they will need to be created, rendering potentially life-changing DigAT applications too expensive to develop or sustain. In recent years, this has become an area of active research for the development of immersive, metaverse platforms ().
Circular economy principles for DigAT
To ensure the longevity and affordability of DigAT, these products will need to be sustainable and easy to repair. In the context of a global rise in demand for digital technologies which is drawing on finite resources (eg rare earth metals), this may require consideration of circular economy principles in the production of new DigAT. The circular economy is a model which aims to extend the lifecycle of products through sharing; leasing; reusing; repairing; refurbishing; and recycling existing products as long as possible ().
As these principles can extend to the entire supply chain of a product () (as demonstrated in figure 3), circular economy principles can be difficult to execute at scale. However, in the narrow context of DigAT, potential circular economy initiatives include universal accessibility standards; interoperability between DigAT and other digital technologies; lending libraries; digital technology repair schemes; and the integration of DigAT features into mainstream devices (eg smartphones).
Campaigns advocating for the ‘right to repair’ have led to some jurisdictions introducing or exploring specific right to repair legislation. These include the UK (), the European Union () and the United States (). Critics argue, however, that independent repairs may introduce safety and security risks in devices (). Independent repairs can include individual or informal repair (via informal tradespeople), local initiatives (semi-formal services) and specialist workshops (eg by the technology provider)().
Figure 3
Circular economy model for DigAT ()
Cross-cutting ethical considerations
The design and deployment of DigAT present various ethical considerations. The following challenges were identified throughout the activities undertaken for this report and cut across diverse applications of DigAT. In particular, this section draws on insights developed from a PESTEL (political; economic; social; technological; environmental; and legal) analysis of DigAT (). Some of these challenges may require new policies or legislation, while others may require trade-offs to be made by DigAT consumers.
Privacy and surveillance
Applications of DigAT which collect personal data on individuals present privacy risks. Examples include applications or devices which track health statistics or smart home devices which monitor home environments. The collection of this data could lead to personally identifiable information or personal health information being used to identify an individual. Beyond potential security breaches, there is also the risk that companies collecting the data may claim the right to freely use or sell such data without users’ consent. These risks exist across a wide range of digital applications beyond DigAT and require considerations on data protection legislation and enforcement, especially when applications or devices may be developed or storing data in other jurisdictions.
Data bias
DigAT which rely on machine learning techniques risk reproducing biases within the training data. The reproduction of these could lead to the misrepresentation of disabled people’s experiences and inaccurate or, even, harmful solutions being proposed. The nature of this challenge will depend on the application and the data used to train models. In this context, the challenge is likely to be greater than normal due to existing limitations of disability data. Examples of risks may include emotion recognition technology which operates on ableist assumptions about emotional expressions () or weak translations of text into accessible languages.
Digital exclusion
DigAT will not be a solution for all people and many will prefer to retain more analogue and interpersonal methods of accessing essential services. Furthermore, levels of digital literacy are likely to vary significantly across demographics and regions which could lead to some disabled people being unable to use applications being developed on their behalf. For example, on age, a survey of the British public conducted for this report found that 76% of 18- to 24-year-olds feel confident in their ability to adapt to future technological changes as they age compared with 56% of those aged 55 and over. Exclusion is likely to also be a risk across income levels with disabled people often being disproportionately represented in lower income households.
Access-washing
The concept of access-washing refers to organisations adopting assistive technologies without addressing deeper ethical or infrastructural issues. For example, technologies such as automated captioning might provide greater accessibility for some hearing-impaired users but risk excluding others who prefer or require human captioners. Furthermore, in a social care setting, DigAT may have negative implications for care workers as well as affecting the quality of care provided to individuals. DigAT could also have negative consequences for disabled people if their needs (including needs related to complex or intellectual disabilities) are not sufficiently accounted for in the design of these products. In addition, the environments or contexts in which DigAT products may be deployed is not always fully considered. For example, in Pittsburgh, the roll-out of food delivery robots was paused after wheelchair users complained that the robots were blocking ramps and narrow roads ().
Informed consent
For the execution of inclusive design practices, it is necessary to integrate the perspectives of potential end-users for a product. However, to collect this information while abiding by ethical research norms will require gaining informed consent. This challenge particularly applies to people with intellectual disabilities who may be perceived as being unable to provide informed consent. Due to this perception, they may be excluded entirely from research.
Considering how to include people with intellectual disabilities will be essential to ensuring DigAT can serve people across a range of disabilities. As this challenge applies to research generally, there will be lessons to be learned from experiences in fields beyond DigAT development (eg educational and clinical psychology).
Copyright
The use of generative AI in DigAT (eg to lower barriers to accessibility in game design) poses ethical challenges associated with the use of platforms which may have been built upon copyrighted material without permission (). This can often be the case with applications which have been trained on data scraped from the internet. This data can include original artwork, film and written materials, amongst others. The risk of plagiarism may lead to disabled content creators not wanting to use DigAT built upon opaque generative AI platforms which lack clarity about the training data used.
Ecosystem misalignment
Differences in the worldviews held by the developers of digital technologies and disabled communities can pose challenges for those who align more closely with the social, rather than medical, model of disability. This difference is particularly challenging when the views of developers may be considered eugenicist, viewing DigAT as optimising humans or ‘fixing’ disability instead of aiding disabled people to live more independently in their social environments. Ensuring DigAT exist to serve the needs of disabled people instead of a notion of how humans should be will require meaningful engagement and discussion with disabled people in the development of new DigAT.
Case study 4: DigAT for playing and composing music
Music is a fundamental part of human expression, offering social benefits, such as promoting cohesion and individual benefits, such as improving wellbeing. While the capacity to create and enjoy music is not limited to non-disabled people, barriers due to inaccessible instruments and music venues limit disabled people’s access to music.
Opportunities
Advancements in DigAT, such as wearable technologies, software and mobile apps, offer opportunities to increase music inclusion for disabled individuals, from beginner to professional levels. Specialised tools created for gaming, such as eye-trackers and joysticks, can be adopted for musical creation and enjoyment. EyeHarp is a digital instrument using eye-tracking systems to allow people with severe mobility issues, such as locked-in syndrome, to learn and play music with several instrument sounds through eye movements (). The CMPSR music controller, built with gaming hardware, can be connected to any Musical Instrument Digital Interface (MIDI)-enabled software or hardware to play musical notes and chords using the joystick and buttons (). The free music notation app MuseScore supports screen readers and live Braille translation of music scores supporting Blind and low vision musicians to create and explore music scores ().
DigAT can also help create more inclusive and accessible environments for enjoying music. SightPlus, an augmented reality headset which provides real-time magnification, has been piloted at a music festival to provide a better experience for people with low vision (). Haptic suits, which are wearable technologies providing tactile feedback in response to music, can be used by D/deaf and hard of hearing people to feel live music vibrations at concerts and clubs (). Lack of accessibility information for venues and difficulty booking access online leads to disabled people having to share personal health information multiple times to confirm whether a venue meets their needs. The use of online booking systems which integrate with disability and access requirements data, such as through the Access Card, could provide a simple way for disabled customers to only share this information once ().
Challenges
While DigAT in music show great promise, significant barriers hinder their widespread adoption, particularly for disabled artists. Many technologies, including advanced wearables, remain expensive to develop, costly for individual users and similar to traditional instruments, often require extensive training. Sustainable financial support is essential for developing new DigAT and preventing technology abandonment.
Initiatives like Drake Music’s DMLab () and Abbey Road’s REDD incubator () can drive innovation in accessible music technologies. However, scaling these efforts requires ongoing investment, skills development, infrastructure and community-building. Collaboration between developers and disabled artists through co-design processes is also essential for ensuring technologies are effective and meet users’ needs.
Affordability is a major obstacle, especially for artists in low-resource settings. In a recent survey, 67% of disabled music makers considered financial barriers to be a significant obstacle to creating music (). Overcoming financial barriers is key to making these innovations accessible. Programs like the UK’s Music Opportunities Pilot for disadvantaged and Special Educational Needs and Disabilities (SEND) students could help ensure equitable access to music education, fostering future generations of skilled disabled musicians by connecting SEND programs with assistive music technologies ().
Lack of awareness of accessible music instruments amongst disabled people, music retailers and educators also contributes to lack of adoption (). Promoting education and options to try accessible music instruments can help raise awareness about digital instruments.
Example: Soundbeam 6
Soundbeam 6 is a gesture-controlled music tool designed to allow disabled individuals with physical, sensory or intellectual disabilities to express themselves musically (). The device uses sensors to translate movements into sounds with a library of sounds that can be programmed for personalisation. In England, Soundbeam 6 is a government-approved assistive music technology made available to young disabled people under the UK government’s 2022 National Plan for Music Education ().
Conclusion
Several examples of innovative DigAT are already used by disabled artists creating music and by disabled people enjoying music at home or at music venues. More widespread DigAT adoption requires addressing barriers related to affordability, lack of awareness and creating a scalable and sustainable ecosystem to develop DigAT that works for all disabled users.
