foto/photo @www.betterup.com
Can’t see invisible disabilities, it is not there. Just because you can’t see it doesn’t mean it is not there
This is the biggest bias people have against invisible disabilities
Stakeholders of this project
About invisible disability
According to Invisible Disabilities® Association, an invisible disability is classified as a physical, mental, or neurological condition that is not visible from the outside yet can limit or challenge a person’s movements, senses, or activities. People usually assume disabilities to be physical or visual when many disabilities are not apparent. A disability is generally defined as a physical or mental impairment that has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.
Invisible Disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges, primarily neurological. Invisible disabilities, or hidden disabilities, are defined as disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts.
Possible challenges and biases to be encountered
Firstly, because invisible disabilities are inherently unseen and unnoticeable to others, this makes a large part of the invisible disability community not easily understood by society, which is one of the controversies. Secondly, some people with invisible disabilities choose not to disclose their private illness, not only because of psychological motivations but also because of the potential stigma others may have for them(Santuzzi, A. et al., 2014).
In addition, social inclusion of invisible disabilities still needs to be improved, including civic awareness and understanding. In summary, for the scenario starting with the invisible disability group, disclosure and non-disclosure of invisible disabilities pose a paradox and make disclosure a very high-risk decision with many potential advantages and disadvantages. The resulting situation is the predicament of disclosure for employees with invisible disabilities(Prince, M. J, 2017).
Mapping potential stakeholders
Our stakeholder map is divided into three main categories, public social space, organisation and intimacy. Within these three sections, we have selected at least 1-2 stakeholders that we can reach at this stage to expand and connect with. For each potential stakeholder, we collected basic information about them, what they are good at, how they can help us solve problems, and what they can offer. We also indicate their contact details.
For the project to progress, the stakeholders must support the project and provide us with assistance. Therefore, we have taken two main initiatives to gain the stakeholders’ attention. The first was to re-screen the list of over ten potential stakeholders and select five highly relevant to our research direction that we urgently needed. In other words, five that were of higher priority. For each stakeholder, we set the objectives of the interview and the questions we wanted to investigate and understand. Doing are-targeting and question analysis will give us a better understanding of them and give us an advantage in contacting them. The second thing we did was to design a poster on our research’s direction and topic and present our research objectives in general terms in our poster. In our stakeholder contact emails, we highlight the project’s focus and state what we want to learn from the stakeholder. By attaching the poster to the email, we hope to get the attention of our stakeholders and increase their likelihood of responding.
Street interviews - Understanding public bias against invisible disabilities
During the first research phase, I wanted to collect as many stories and ideas as possible to get inspiration for this current direction. So we created an engagement tool, like a palm board, where a blank sheet of paper could be inserted for people to present their ideas. The design of this engagement tool was based on two primary considerations. Firstly, to start with the idea of people drawing disabled people’s symbols to see how much attention people are paying to this area and to bring up invisible disabilities again for people to think about. The second consideration was that I wanted to get people to talk and share their stories through drawing and writing. Because human nature dictates that when you write or draw something, speaking up and explaining your thoughts or ideas to people is often a priority. During the research，
- We heard from the interviewees that they believe there is still a lot of tolerance and awareness of invisible disabilities.
- They believe there is still a need to increase tolerance and awareness of invisible disabilities.
- In some public situations, they felt that people with invisible disabilities were vulnerable to verbal attacks when they did not choose to be exposed.
In such situations, people should become more open to the ideas of others. People must become more open to the ideas of others.
Field Research - Visiting the public environment for invisible disabilities
In the context of the public scenario, Tesco’s reception office for people with disabilities was one of our stakeholders. So we conducted a round of field research on the results of the collaboration between Tesco and Sunflower. The results we obtained were good and different from the paper-based analysis of the case study.
- The good points are that the project’s results were very well done on the ground, not only in terms of effective feedback to customers who needed advice but also in terms of lanyards and help support without any waiting time for appointments.
- What differs from the paper study is that the staff training is less than satisfactory. Rather than specialist training for staff on disability and invisible disability services, this was replaced by simple and sketchy video training content, suggesting that getting the project and training off the ground within a company with a large employee base would be more costly.
- The second aspect is that the number of invisibly disabled customers wearing lanyards in Tesco is very low, contrary to the official figures of Tesco, which serve one-sixth of the population with invisible disabilities (Sunflower, H. D. 2022).
And As an allergy sufferer myself, my experience of shopping in supermarkets by wearing my lanyard has not been as good, with very few shop assistants coming to ask and offer help. So wearing a lanyard is not a great advantage for me. This echoes the ethical issue of exposure of invisible disability groups in public scenarios, which has yet to be considered in this project. On the other hand, confirms that we should take this issue more seriously.
How to move forward?
Talk to stakeholder - Chief Brand Officer of Sunflower
With the support of Hidden Disabilities Sunflower‘s CBO, Annette, We were lucky enough to learn about hidden disability sunflower started at Gatwick Airport in 2016, and it was their accessibility team who were Gatwick Airport’s core work in this project to help visualise invisible disabilities in these scenarios.
A few key points emerged from the conversation,
- First of all, before anything else, we should understand the principle that everyone is equal, but at the same time, everyone is unique.
According to Annette, 20-25% of employees within Sunflower have invisible disabilities. They respect the needs and uniqueness of each individual and have created a safe environment for employees to share their invisible disabilities and health conditions.
- The second point, creating an inclusive cultural environment, must also be highlighted here.
When designing for invisible disability groups in a scenario, one needs to consider if the cultural inclusion in that scenario needs to be improved or changed.
- Finally, Annette also recommends the principles of universal design. In her vision of keeping the design simple and reaching more people, we need to follow universal design principles so that more people can benefit from it.
* Infographic from Annette
Talk to stakeholder - Founder of affasair
Another of our stakeholders is Chris from Affasair, who has suffered from chronic pain and diabetes for a long time and, as a representative of invisible disabilities, has much to share about his experiences and encounters.
- Firstly, when using our engagement tool to select a physical pain index, he told us that people with invisible disabilities, including himself, also suffer from several co-morbidities that can lead to a very poor physical state. Patients often take much time to resolve medication issues due to complications and the severity of the main pre-existing condition.
- On the second point, in using the engagement tool to select support and accessibility, Chris shared his views on the ethics of exposure in the invisible disability community in public scenarios. As a person with an invisible disability, he felt that it would be helpful for them to be seen by others. However, given the risk of exposure, discrimination and offending behaviour must be reduced to create a safe environment for the invisible disability community.
- On the third point, Chris also mentioned the mood swings caused by the disease and the forgetfulness he experiences when taking medication.
*Challenge Mapping completed by Chris
Talk to stakeholder - Founder of Paithea
Our stakeholder is the founder of Pasithea and lives in the grey. She has a severe invisible disability; she has multiple conditions, such as Meningitis and Crohn’s disease and has had an invisible disability for over 20 years. Through her personal experiences and insights, we have experienced unprecedented growth and breakthroughs in our projects due to her resilience and determination to fight and speak out against the invisible disability community like herself.
In terms of personal experience, Mimi shared with us what she has been through. This included her living alone and being subjected to discrimination and verbal violence for using an accessible toilet in a public setting. In addition, because of her illness, she mentioned that in some cases, she had difficulty balancing herself and made herself look wobbly. This has led to some times when she is verbally attacked by passers-by, saying that she is as unable to take care of herself as she is drunk. The prejudice and misunderstanding of others, which makes her feel unpleasant and even emotionally drained, also makes her need a peaceful public environment and a feeling of safety.
Mimi lives alone all the time, without the company of family and friends. As a result, she often feels lonely and needs the company of others. In addition, living alone, coupled with the complications brought on by her illness, has made life difficult for her due to forgetfulness. Forgetting to brush her teeth, wash the shampoo out of her head or even turn off the fire can sometimes make life alone dangerous. So she tells us that while trying to overcome her forgetfulness, she also needs an emotional companion. Although she usually uses some intelligent voice assistants, they are ultimately cold machines.
*4-Dimensional Assessment by mimi
How to define a key point?
In reality, however, we were at the first diamond-edge turning point. We had collected much data but only analysed it roughly, and the conclusions and results needed to be sufficiently detailed. The goal is to identify and define the problem by analysing the data we already have.
Our focus was mainly on 1. the facts the participants repeatedly highlighted and 2. how did the participants themselves feel and realise?
We looked for details that we could focus on that were worthy of deeper and repeated reflection.
Analysing data and coding
After collecting the information extracted from the participants’ conversations, we first codified the information by dividing it into several categories: needs, feelings, physical conditions, barriers (5 dimensions) and participants’ ideas. After coding all the key data into these baskets, we sorted them for commonalities and extracted the needs and pain points. Of course, we remembered to specify the target users and scenarios for each need and pain point in the back. Finally, we combined the target users, scenarios, needs and pain points into a list of opportunities and ideas.
Define target users and scenarios
After coding and summarising a large amount of data, we extracted the key messages and frequently occurring information to create our persona and user journey map.
Brainstorming & rapid sketch
Next, we brainstormed and did some quick sketch ideas for the defined problem. The main aim was to think outside the box as much as possible and find more creative ideas for our defined problem. I thought one of the ideas I had during the brainstorming and quick sketching phase was worth documenting. Regarding user needs, users with memory loss due to brain damage are extremely dependent on reminders, and both mobile phone reminders and sticky note reminders directly tell the user what to do. (Ophey, A., et al, 2020).I am also thinking about possibly incorporating some elements of memory training into the design of assistive interactions for people with amnesia caused by brain disease. In the hands of one of our key gatekeepers, she has created a website (https://www.agapyearforthesoul.com/lets-play) for people with brain damage that includes brain and memory training. In my search for possibilities, I thought that memory training and reminders could be combined in a wearable device. See option one in the sketch for more details.
Conceptual thinking
At this stage, I was also thinking about what our products would look like if they were used by users in the future. The first thing we discovered from researching timers and reminders on the market was that when a product like a timer, which is already simple and clear in its function, is added to, the complexity of the product for the user increases exponentially. Based on our user research and feedback from stakeholders, it appears that people with invisible brain disabilities prefer simpler devices to use. However, to meet the users’ needs and achieve basic functionality, we set the acceptable zone of the product in the middle of the curve, in the middle of the simplicity range. Regarding conceptual thinking, we envisage the product to have 1-2 extra steps compared to a traditional timer, which may require some learning costs for the user. However, once mastered, the user can no longer set it up or simply adjust it to make changes.
Development
We developed our concept based on the feedback we received from our stakeholders, combined with the ideas we mentioned in Conceptual Thinking. Finally, we settled on a reminder that interacts with the user based on location and behaviour, and the user can use the familiar voice of a loved one or friend as a reminder. After clarifying the basic concept, we tried to combine Arduino parts to implement the functionality. Eventually, distance sensors, speakers, microphones, rotary encoders and LED displays became important components of our input and output. Furthermore, in the next step, we are moving closer to a solution; our next step is to prototype, test, gather as much feedback as possible, and update the iterative product.
Prototype & Testing
Once we had identified the components needed to realise the prototype, we started to build the prototype, using Arduino to build the various modules. Thanks to our previous work on the relationship between the modules, we were able to list the differences between the output and input components, and we were able to prototype very quickly. After making sure that the components were successfully connected, we then went on to design the housing, prototyping the housing with laser cutting and successfully placing the components into the housing.
Feedback from stakeholder
In response to our proposal, Mimi advised us in two general areas. Firstly, considering that we are dealing with a group of people who suffer from forgetfulness due to brain disease, although the degree of brain disease can vary, and so can the degree of forgetfulness, it is important to design for them in a way that makes it as easy to use as possible by simplifying the steps. Although it is recommended to use ai and other technologies, the second point is that Mimi once again stressed the importance of reducing cognitive costs. In addition, reducing users’ cognitive and operational costs through technology and ai is also an aspect that could be considered.
Further development
Based on the results and feedback of our prototype tests, we have taken the original prototype one step further. For this case, we chose a minimalist and rounded shape to ensure that the product is comfortable in the hands of the user and looks good in the home environment. Secondly, we have sketched out several new functional areas in the design. The volume control has been placed on the side of the product. In the same way, the user adjusts the volume on a mobile phone so it is more in line with the user’s operating habits. We also added a status indicator, as we thought it was important to have an indicator to tell the user what state the product is in, not just for the sound output interaction. Finally, a new time knob has been added to the side, with the adjusted time displayed on the countdown screen intuitively. After combining the merits of the sketches, we merged them and drew up a final sketch scheme, from which we will proceed with the model design and scenario design.
Product demonstration in specific application scenarios
We have displayed the product in real-life applications, including bedrooms, toilets, kitchens and entrance doors. Users can trigger specific reminders in each scenario, with voice reminders and countdown calculations, to remind them exactly when to do what they need to do, thus breaking the pain point of excessive forgetfulness due to brain damage.
Project impact
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Our stakeholder-Chris, as a patient with an invisible disability, is also one of our users. In terms of feedback from our users, we have received positive feedback from him. However, regarding other stakeholders, we are still trying to reach out and invite them to test and give their opinion.
With the help of universal design principles we can consider the final product in a way that meets the needs of our target group but at the same time makes it possible for it to be used by as many people as possible.
