Note: Here is the final product – Statice, the medical passport.
This year is a bit different than previous years in the way that we ware tasked with doing two briefs for one module. The Activism brief is supposed to be well underway by now. This time, we are working on privacy. We have to create a visual identity that comprises of a mark (the recycling logo is an example), a video with a call-to-action and a user interaction centred around an aspect of privacy we are interested in.
It took me a ridiculously long time to find something I wanted to work on. Privacy isn’t something I thought of before, at least not in a problem-solving way. Problems came up, such as digital privacy and boundaries, which didn’t interest me much because of how obvious it was. My research mustn’t have been as thorough as I thought it was, because my classmates continuously came up with ideas I’d never considered or heard of.
I decided to take what I thought would be an easier path. I’ve been working on disability for a while so how hard can it be? There is little to no information related to the protection of disabled people’s privacy. Hell, there’s close to nothing on why their privacy would need protection in the first place.
I’m looking at disability in employment. The number of disabled people currently employed is low compared to the number of disabled people. Whether it is because of discrimination, a lack of resources and accommodations, or general misinformation doesn’t matter. Now I know that the COVID pandemic has increased unemployment numbers, but it’s also opened up doors for accommodations to be made. People don’t have to travel anymore to the advantage of physically disabled people. Although it’s important to remember that not all disabilities are physical and while remaining seated will suit some, staying at home without structure won’t suit others.
After a lesson today, I was gently reminded that the brief is about privacy. I feel like forgetting the brief and switching more and more to activism is going to be a constant in this project, something I’m not looking forward to. When you think about it, both briefs are similar in some ways. Advocating for more privacy and coming up with solutions is activism, is it not?
I’m stuck in a strange place between wanting to work on their privacy issues and wanting to make it all more visible. A young woman in a wheelchair, let’s call her Emma, used to have two helpers in high-school to take her to the bathroom. She shared that one day a worker from an organisation I can’t remember the name of, came by and asked to assist to the whole process. She stated that it’s mandatory and that the information collected was only to make sure that everything was running smoothly and to take notes on how to improve it. She had come to the school and demanded access to a private moment without asking Emma about it. She was angry and distraught. She refused and still had to argue with the worker that her privacy and her right to say no should be respected. The lady was stunned.
Another story is of someone asking for the disabled status and getting asked very personal questions. In the heat of the moment and after months of the process, they shared unnecessary things that they’d rather have kept private.
There are so many stories about parents sharing pictures of their children in the middle of a crisis or visibly in pain with captions like ‘the other side of the coin’ or ‘you have no idea what goes on behind closed doors’.
It’s a recurring theme. Disabled people’s right to privacy and control of their information is taken advantage of, forgotten about or overlooked.
Back to the strange place I’m in – visibility because these problems aren’t talked about enough, I can find virtually nothing about them, and privacy because they so clearly need it (and also because that’s the brief).
Privacy and transparency are especially important for working adults with disabilities. A lack of privacy on medical files can negatively impact employment, insurance, and medical reimbursements, amongst other things. Canada has put in place what they call a ‘purple passport’ that is essentially a passport recording your condition, what keeps you from doing your job and the accommodations you need. This passport is filled in with your manager and revised regularly. There is a similar passport for NHS workers aimed at facilitating transfers between services and hospitals. It was especially useful during the COVID pandemic as it cuts down file analysis time.
Creating a ‘passport’ that contains all their information where they choose what is visible at what times depending on what they need it for today would be the perfect combination of visibility and privacy. They get to chose what they share and with whom. Below are the purple passport and NHS passport. I initially used them to figure out which questions to ask in the work section and the emergency contacts section. I added two other sections: Condition and everyday life.
I realised that no matter how much I try to encompass every single variation, possibility or condition, I most likely missed quite a few things.
I never finished the first document I made. I attempted colour, patterns, images, anything to make it look less medical. The reason I didn’t do that is that insurance companies want to see something professional that they can take seriously. Within the given timeframe, finding the perfect balance between design and medical seriousness was not something I felt was achievable. Also, the amount of information that figures on medical files is considerable and essential. You need to prioritise order and logic.
My first attempts were underdeveloped. The questions asked were too general and required the person to do all the work, which in turn might lead to relevant information not being mentioned. After asking doctor and disabled people, I had a better idea of what the questions were, what amount of detail went into it and what their experience with these files and forms were.
It was initially supposed to figure on a website. However, I couldn’t make it work. I’ve wanted a solo project since the start of the course, only to understand that working with someone leads to a more diverse approach and more skills. They might have been good at web design, something I’m ignorant about.
I started with a blank template. It went well until I had to create the form and find a way to make the sections disappear if they weren’t relevant to the person. I’ll eventually figure out how to make it work but in the meantime, I made a functional document.
The passport took me forever to make, which in turn made me late on just about everything else. I need to learn what I reasonably can and can’t do within a determined timeframe and learn to multitask so I don’t focus on one aspect and neglect the rest (the mark and video).
Here is the final version in PDF and PNG.
For the mark, I toyed with the idea of creating a new icon for disability. I won’t be doing it for several reasons. Firstly, it’s impossible to represent every disability and condition. It’s impossible to capture what being disabled is. Lastly, such a logo shouldn’t be designed by a non-disabled person. Instead, I experimented with the eye for visibility and added circles for privacy. There are multiple circles, multiple networks of information, all of which are closed and secure. If I’m being honest, something bothers me with the final version. It looks scientific at best and mythical at worst. I’ll need to do more iterations in order to get better at logo making.
The video is a mix of interviews and documentaries: tips on how to convince the judges you’re disabled, who faked what to receive the pension, insurance companies spying on people … I then introduce Statice, not as a solution, but as a tool to make your life easier, give you back control over your information and, hopefully, avoid some of these situations. The name Statice is a reference to the Purple passport. It originates from a purple flower that doesn’t wilt. I wanted something different that doesn’t include the word ‘passport’ in it, but also reminiscent of the original idea.
These elements are accessible on a website. You register to become a member. Once you are approved, you have access to your member area where you can get started on crafting your passport with the help of your doctor. It functions a bit like a social media page that you share with the appropriate persons.
At first, it felt a bit like creating a Frankenstein monster and desperately stringing independent elements of the brief together. I was too focused on what I wanted to do and not enough on what the brief was. I tried to make it work but, ultimately, you have to adapt what you’re doing to what is asked of you.