Context mapping study
What is the current view of disabilities and how has this changed during the years? What are assistive technologies and how do they come along in the project? How does Human centered design work? What does Hereditary Spastic Paraplegia do with the human body and how does it effect the everyday life? What is co-design and how is it used in this project? In this article you will find more information on these topics.
How do we view disability?
People with disabilities are often presented through two dominant narratives by the media: tragedy and overcoming. ‘Tragedy’ depicts that disabled people are pitiable because their lives have been ruined by their condition. The narrative ‘overcoming’ portrays disabled people as strong individuals who succeed ‘’in spite of’’ their condition.
Multiple studies however, have shown that people expect the quality of the life of someone with a disability to be much lower, than disabled people actually report. (Beddes, 2021)
What has changed about the societal view on disability in recent years?
Societal views towards disabled people have slowly changed as several organizations were established, supporting the rights of people with disabilities. This has resulted in improved public perception of disabilities. (Changes in the Views of Disability, n.d.)
How does that affect the way we think about care and support of people with disabilities?
After the ADA law was passed, people with disabilities were the largest legally protected group in the country. (Reynolds and Wieseler, 2019, march).
The health care has also improved and the once acute and fatal conditions became manageable. Due to the increase of disabled people, and the changing view on disabilities, it is required for all of us to become competent in providing care to patients with a variety of disabilities. (Burtner, 2022)
What does ‘participation’ and ‘empowerment’ mean?
Participation is ensuring that disabled people are allowed and enabled to access the same facilities, activities and have the same privileges as others. (Sharma, V, 2018).
Empowerment refers to influencing local services to support and enable people with disabilities to influence decision-making processes. It helps people with disabilities achieve their maximum sustainable independence level as contributing, responsible and equal participants in society. (10 Reasons Why We Need to Empower People with Disabilities, n.d.)
What about ‘technology’ becoming a part of daily care?
Assistive technology in daily care enables and promotes inclusion and participation for people with disabilities. The main function of this technology is to improve an individual’s functioning and independence. (Assistive technology, n.d.)
What are assistive technologies?
Assistive technology is any piece of equipment that helps disabled persons' capabilities in daily life. As the Americans with Disabilities Act, 1990 states: AT is any item, piece of equipment, or product system that is used to increase, maintain, or improve functional capabilities of individuals with disabilities. (ADA National network, 2022)
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What has changed about the societal view on disability in recent years?
Designing Assistive technologies requires a lot of planning with users. For a successful design, this means it also requires attention to aspects of the environments in which the technology will be used, the needs and preferences of the user, and the functions and features of the technology. (Scherer, MJ, & Craddock G.  , 2002)
For our group work, this will be done using the co-design process. Different documentation, such as interviews, photographs, observation will take place and will be the basis for our research. Meeting in person and visiting users' living spaces would guarantee the best results.
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What does the term ‘technology abandonment’ and ‘technology appropriation’ mean?
Technology abandonment means; users discarding their product after some time of use. There are a few reasons why users do this when it comes to people with disabilities. Since devices indicate repeated use, it may signify dependency, which indicates that a persons’ personal concept of independence may influence assistive technology acceptance and use. (Phillips B, & Zhao H. , 1993)
Other reasons are “poor product quality” and “change in needs/priorities”. Therefore technology appropriation is determined by the usefulness of the products functions, products that are not being discarded will be used for a longer period of time and will be seen as a norm in the daily routine of the users.
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Human centered design
Human-Centered Design (HCD) is a problem-solving approach, which uses a human perspective in the problem-solving process. This is usually done by observing the problem in context, brainstorming, conceptualizing, developing and implementing solutions.
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Human-Centered Design builds on participatory action research, going beyond participant participation and providing solutions to problems rather than just documenting them. The initial phase typically involves immersion, observation, and contextual frameworks. Subsequent phases can focus on community brainstorming, modeling and prototyping, and implementation in community spaces. Furthermore, human-centered design typically focuses on integrating technology or other useful tools to mitigate problems. Once a solution is integrated, human-centered design typically uses system usability scales and community feedback to determine the success of the solution. (Cooley, n.d.)
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In this project, human centered design is going to be used to make a product specifically for our user. The participant is going to be involved a lot in the design process by using co-design
Introduction to assistive technologies
To conclude, for disabled people to be able to participate and feel empowered, assistive technology is very valuable. This requires knowledge and understanding of the user. It would be best if we are fully aware of the choices which are made in daily life. However, a very extended research would be needed.
Next to that, it is important to focus on products which are not discarded after a while. If that happens, this is not only a waste of time and money, but can also negatively influence the user.
The focus of the project is human centered design. When the user is involved in the process, this will lead to unique designs. We will keep the participant updated and involved on a regular basis.
The disability of the user includes many symptoms and it is not possible to design for all of them. It is important to realize what the users' needs are, and if this is something we can design for. It is also important to be very specific, so it will be of value to the participant.
Our design challenge will be to create something that makes it easier for the participant to position himself more healthily and that provides the person more stability. The support should be usable without help from others and it should not be discarded after a short period of time.
Discussion and conclusion
Our participant suffers from HSP (Hereditary Spastic Paraplegia). HSP is an inherited neurological disorder, whose main symptom is insidious walking difficulty due to weakness and spasticity of the lower extremities. Some further information about this disability can be found in Research on disability.
Co-design / participatory design
In this project, the goal is to design a tool for one specific user. One way to do this is by using co-design. Co-design means that the designers do not design for the user, but with them. Because of that, co-design often leads to unique perspectives. This could make a huge difference, since the user(s) are often an important part of the decision making throughout the design process.
Implementing co-design could be done in a lot of different ways; It can vary in involvement and in methods. It could for example be a useful method to try to gain more insight in a participants daily life or living environment.
In all forms of co-design it is important to make some agreements, for example about online and/or physical meetings. In our case, we decided to have a mix of both physical meetings at the UT and online meetings using Microsoft Teams.
Next to that, we would also work together. In these moments we can experience how his disability affects him and his movements, and we can share thoughts with each other. We plan on meeting our participant once a week and keeping him involved in the process as much as possible.
Theoretical introduction to the disability of the user
In the storyboard below, a visual representation of our users’ situation is given. It also shows a problem that the user experiences on a daily basis, which is why this will be our main focus in the project.
Visual storyboard
Our co-designer is a 36 year old man, who lives in Amsterdam. His parents live in Enschede. He works at the public transport department for the municipality of Amsterdam and he likes to play tennis, read and travel. He lived in Berlin and studied at the VU in Amsterdam. To move around, he uses a wheelchair or a walker as he has HSP(Hereditary Spastic Paraplegia), a disability where he has trouble controlling his legs. Nevertheless, he is very independent. For example, to travel short distances he uses his hand bike which can be attached to his wheelchair, and he cooks by himself. When he does not need to travel, he likes spending time biking as well.