My name is Lukasz Olejnik. I have been disabled since the end of primary school. In 1999, I underwent a brain tumor surgery in a very difficult location. It goes without saying that the consequences of such a procedure can be very serious; in my case, it resulted just in hearing problems that can't be corrected with a hearing aid.
I had to deal with this in school, high school, during college, throughout my PhD, and now in my professional career. My disability has a health and a social dimension. Living with a disability that isn't evident to others poses some unique challenges, and that's what I'd like to focus on in this article. (I have had other challenges in my life, but in this essay I want to focus on disability).
I'm sharing my story and experiences to help others who might be struggling with similar difficulties; I hope it can be helpful for at least one person struggling with difficulties such as disability, lack of self-esteem, or uncertainty about the future. As for those who have been spared this fate, I would like to make them more aware of what others might be going through and encourage them to be open to people who are struggling with disabilities.
Let me start with an example: with my hearing loss, it is really difficult for me to perform two activities at the same time. For instance, I can't listen and take notes at the same time. At university, I coped by photocopying notes from students or professors, but undoubtedly some nuances of lectures eluded me. I looked for more information on the Internet, in books and in publications. I had to put significantly more time and effort into studying than others. It paid off: my master's thesis resulted in a scientific publication that’s cited to this day. I was lucky to do this work under the guidance of an excellent supervisor. In the early stage of my research, it helped that much of the work didn't require collaboration with others. Reading publications and books, or writing, I could do independently. This definitely worked in my favor. My subsequent publications proved to be a continuation of my earlier success, and opened many doors. From there began my work in cybersecurity, and fortune led me to places like CERN (European Organization for Nuclear Research), University College London and the International Committee of the Red Cross. All of these places aim to challenge their staff. To me, each presented additional, unforeseen obstacles.
I went to France for my doctoral studies. Since 2011, I have worked as a researcher at the French Institute for Research in Computer Science and Automation (INRIA). Learning a foreign language with a hearing impairment is quite a challenge – it's hard to learn correct pronunciation and speech comprehension. I learned the basics of English prior to my fateful surgery which helped in the future development of this skill, but French came later and proved to be especially difficult, with its phonetics, syntax, and fast speech rate. Around that time, I also discovered an interesting effect: consuming a small amount of wine improved my understanding of speech (of course, going overboard, on the other hand, negatively affects perceptual abilities, as any reader probably understands).
In 2015, I defended my Ph.D. thesis in Computer Science (privacy and security). I studied the privacy of web and online advertising systems and cast a light on a number of serious issues. I demonstrated risks and security weaknesses in web browsers. I believe that my work led to significant real-world improvements in reducing data leaks.
Despite my academic successes, I had an acute sense of my limitations while working on my Ph.D. I realized how great an impact disability has on the lives of everyone who experiences it, including young scientists. My daily work was very individual. My supervisor and other Institute staff supported me very much, and I will always be very grateful for this. Unfortunately, at the same time, I realized how big a problem meetings in larger groups are: both when it comes to work and to social after-work outings, which unfortunately I had to give up for fear of being misunderstood.
I faced similar challenges when attending scientific conferences. Participation, listening and presenting were never an issue. Even when fielding questions from the audience, I could simply approach the person, and ask them to repeat the question, or ask the session chair for assistance. But again, my hearing impairment limited my ability to participate in group discussions, including informal networking opportunities, such as those after the presentation, during coffee breaks, lunches, and dinners. This is when others have the opportunity to gain contacts, make friends, or collaborate, increasing their chances of interesting future projects. I've had to limit myself to smaller groups, or individual conversations. Not everyone finds this convenient or acceptable. The effect is that it all depends on where one stands, or with whom in particular one exchanges a few words. In essence, a kind of career lottery.
These days, a lot can be achieved by communicating over the Internet, but even there, hearing still plays a major role. Professional, conference or even personal meetings are often dynamic, chaotic. For people like me, following the flow of such interactions can be a challenge. One approach is to identify a couple of key participants and focus my full attention on them, but this doesn't always pan out.
It helps to set an agenda and goals for the meeting beforehand, but this requires planning and cooperation from all participants. Limitations on communication due to hearing loss can raise questions and thoughts about how well can one really function in today's educational or scientific system, or even outside of it more broadly in technology or policy communities. There are situations where overcoming these limitations can be very difficult.
Today, automatic transcription applications, like speech-to-text on smartphones, are a great help, although they don't always perform well. For most of my life however, I didn’t have access to such solutions.
With a hearing impairment, you often find yourself as an outsider. effectively excluded from the flow of events, with the need for intuitive adoption of goals and priorities, and sometimes, out-of-the-box thinking. Unconventional approaches may not be welcome or acceptable to everyone in academia, in the corporate world or in office life. And yes, I am such an outsider. Those are the cards I've been dealt. Isolation from others is not my intention; although some people may make this simplistic conclusion.
My disability is invisible. You can't see it when looking at me on the street. You can't see it when I appear at a conference, or when I give an interview. Paradoxically, this in itself can be a problem: in fact, because I learned to compensate for it so well, some people who don’t know me might doubt I have a hearing impairment when they interact with me. And therein lies the crux of the social dimension of my disability: its invisibility can lead to misunderstanding. People may assume that I heard something; that I know what the conversation was about, what they said to me, what they asked me to do. When I don't respond as they would expect, they may consider me ignorant or arrogant. This, in turn, can lead to untrue or mistaken conclusions and opinions about me. This social dimension of disability in interpersonal relations is much more complex than it might seem.
What can I do? I may ask if I heard something correctly. And if I have the opportunity, I do so to avoid misunderstandings. This can seem weird in various workplace interactions, including watercooler, “at the printer” chats, or at lunchtime. At times, it feels easier not to ask questions, not to speak up, and to accept not knowing what the conversation is about. As if that would happen, that is, if I would even go to a lunch or pub outing with a group. As I explained earlier with the example of balancing listening or writing at the same time, a similar challenge occurs with listening or eating simultaneously.
So, what can an “outsider” do? I love walking, running, swimming, and reading books. I love culinary culture and local specialties, and I am a bit of a wine aficionado (here, the doctorate in France and work in Switzerland came in handy). My childhood sentiment for agriculture and farming also stayed with me. And I write a lot.
But speaking of foreign countries: moving can be unexpectedly complicated for people with disabilities too. I experienced a lot of support, but also confusion and headaches. I did not think that the differences between healthcare systems would prove so significant. In France, for example, I was able to find a family doctor who was willing to communicate by SMS or e-mail, and it was possible to interact with many specialists in English; this was not so easy in Belgium. In the UK, in my situation, everything worked quite well, due to a system of correspondence between doctors that made sure all health details were written down, making any confusion or mishearing impossible. In Poland, for the most part it was satisfactory, although the antiquated system of making appointments in person or over the phone would get in the way. In the end, it wasn't about the quality of healthcare as much as the challenges of navigating the bureaucracy.
I’m actually not able to talk over the phone. This proved to be a great challenge when it came to, for example, dealing with the bank or the public services. Sometimes while abroad, there was no one who could make such a phone call on my behalf, so I was left to write and send traditional postal letters. In that scenario, instead of receiving a response the same day, I sometimes had to wait weeks or months. Of course, it's not all doom and gloom. For example, in France, I experienced an uplifting story. I once walked into an office in a small town, twenty minutes before closing time. I explained the problem I had, asking them to contact another office on my behalf, and to help me fill out an official form. Everyone was very helpful and friendly, and the matter was resolved without an issue. Sometimes you have to think outside of the box and bypass systemic problems implemented by bureaucracy, offices, corporate structures, and banks; and sometimes you can count on the help and kindness of wonderful strangers.
I act as an independent researcher and consultant, working on technology, cybersecurity and privacy. Digital and technology issues are often at the intersection of technology, law, and policy. To develop my skills I completed a law degree (LL.M) at the University of Edinburgh. I can communicate effectively, including with the media. I have developed a standard of activity and have been providing expert commentary to international media (including Washington Post, New York Times, Financial Times, Le Monde, and others) for more than a decade. This requires clear and comprehensive communication about often difficult and complex topics. My interactions with journalists have taken place in a variety of ways: written text, and less often by voice or video conference. I can't use the phone, which was sometimes received with surprise, or even doubt; I then tried to explain my situation, even if in the dynamic world of the media not everyone had the patience to listen.
I wrote a book (I'm finishing another one). I author articles, analysis pieces, op-eds. I analyze and explain complex issues. For communication, e-mail or instant messenger usually suffices, sometimes a video-call, and perfect hearing is not usually necessary. However, contrary to what one might think, even in such a line of work, hearing can be extremely important - for example while researching additional information or trying to listen to audio content.
In the case of my involvement within the World Wide Web Consortium's (W3C) standardization efforts, hearing has been a particular problem. Working group communications are often multi-person teleconferences, without a video feed or captions. The lack of video is a big problem for me, because I can better understand a person when I can see HOW he or she is talking. Luckily, such meetings are usually transcribed, although the full context is not always written down.
In a world where multi-person meetings are the norm, hearing loss can be a significant limitation. Not all of my former employers understood this. Perhaps some didn't want to understand. How did I cope? Today, "live" text captions in video conferencing programs can be helpful, but unfortunately, these features are not always enabled by IT teams. Moreover, such facilities did not exist in the early days of my studies and work. Despite these difficulties, I worked with many people, including in teams. I managed projects, even if communication was sometimes a challenge. My chairing of steering committee meetings at a research and development agency was not a problem. In this case, the situation was clearly improved also by… the pandemic, when the video conferencing format became a standard. That's also when it became apparent that many in-person meetings were unnecessary.
Before my hearing loss, I, too, could hear music and birds without having to think about trying to listen. Today, passively experiencing ambient noise is not possible for me, as it is for others. In order to hear these sorts of sounds, I have to concentrate, but then other activities, such as work, may become affected. I perceive too many sounds as distracting noise. This is a big downside of working in an open-plan office environment.
It took me years to learn how to function effectively. In my adult life, I have avoided highlighting my disability: I have kept this detail a secret or asked that no attention be paid to it and that people not inform others of it. Despite my requests, this was sometimes done against my will: I had a particularly bad experience when, after a BBC Radio interview about the privacy of technology, the material portrayed me as "a hearing-impaired security and privacy research engineer," despite the fact that I had previously explicitly asked that they not focus on or highlight this fact. Back then I was devastated to learn about it, today I view this as trivial. However, sometimes my hearing loss was used against me knowingly and deliberately, to propagate falsehoods. I can't help it. Perhaps this risk will diminish now, as I explain everything here openly.
When you're facing a serious health condition, it can come with a lot of problems and doubts about life, including about the future. Understandably, it can be difficult to believe in yourself. It can be unpleasant and uncomfortable at times. It might not be easy to get motivated to act or to live at all. That is why I am writing this. I hope that my story can at least be a motivation, an example, and relatable for someone.
I will also never say "I achieved everything in life by myself". I want to point out that I have received a lot of help, and for everything I am sincerely grateful, appreciate and remember. I am not mentioning people by name for fear that I will leave someone out or that someone would not want to be mentioned.