On Being Invisible

Being born with a severe visual impairment, I am often overlooked by society and the people around me. Over the past years, I have made some critical experiences that have probably influenced me more than I would have liked, but nobody noticed or cared.

What I learned is that you always need to be loud and vocal about your needs as a disabled person. Nobody cares if you don't. That's hard as a shy being.

The Hell that is School

In Germany, when you are the only person with a physical disability in the year, you are special in every respect. Because it means you are not at a school for children with special needs. Because it means you attract attention from everyone, everytime - whether you like it or not. Because it often means that you are a first for your teachers. And if you are one of the lucky few who manage to successfully graduate, it just gets worse. The German educational system actively excludes people with a disability by forcefully putting them in special schools they almost never manage to escape. Luckily, I was schooled like regular students most of the time.

For me personally, this meant hell. I have always been a particularly shy person, especially in situations in which I am a supplicant. I almost never asked for help or accommodation when I need it, in fear of being too much work for others or of being actively discriminated against. Saying that an institution is inclusive, diverse - or one of the other buzzwords - won't change that. Because every case I have come to know thus far wasn't, really. Not at all. It was either that everyone was disabled or there were no disabled people anywhere to be found.

And yet I was still lucky to graduate from German secondary education. To put this into perspective: From well over 10.000 Abiturient:innen in my state, only four were granted disadvantage compensation because of a visual impairment. And now I have the possibility to study Computer Science at one of Germanys largest and most prestigious universities. At a university that offers lots and lots of accessibility - according to its public relations department. At a university that has a chair dedicated to Human-Computer-Interaction that in its classes refers to accessibility practices in almost every other sentence.

At the moment, everything university-related happens online because of COVID. For me, this a huge advantage as it enables me to work in my own pace, with my own tools, without having to care for others' needs. Magnifying lecture contents, using a screen reader when necessary, taking notes… all from my already set up and never-changing home desk. That is, if contents were made accessible by default. Which it isn't. As always. This would get more clear if I was sitting in an actual lecture hall like it was back in school. With a magnification camera, extremely large text on my notebook, fast speech synthesis that I forgot to turn off, and eyepieces. It would be clear that me and my needs exist. They wouldn't be as invisible as they are right now.

Since primary school, I have received barely any teaching material in an accessible form. From tiny, unreadable copies, over artistic writing that decided punctuation is not needed anymore, to silent films or entire books in Fraktur - I have probably encountered and dealt with everything. And now at Uni it's the same, even though it would be an easy feat to make things more accessible. It can't be that hard to publish recordings of a lecture when others manage to do it just fine. It can't be that hard to make slides available to the students. It can't be that hard to switch to machine-readable math notation in your materials. And lastly, it can't be that hard to start using software that is accessible.

Doing just these four things would immensely benefit the great majority of people. I remember even regularly sighted students asking for recordings to study independently of time - en masse. Students asking for a copy of the slides to make notes on. At the beginning of the semester, these topics were very present for everyone. Three months in, they are no more. The teachers have repeatedly denied the requests on copyright or privacy grounds, probably not aware that their decision to keep things secret could pose a huge barrier to some people. And while some people hand out their material just fine, others don't do it at all or want to see medical proof that you are not lying to them.

My only way to work with the provided materials would be to go via the universities' office for people with disabilities, who specialize in making material accessible. From my experience, they do it well, but I hardly ever use the service as it is not really worth it for me. I hate having to talk to people to get things the way I need them. And more often than not, they would first have to be re-made because it has changed from previous years when other students with disabilities already went down the very same path. That takes time. Time I don't have if I don't have access to lecture recordings and accessible material because they do not exist or they do not exist at the same time. Plus, I would constantly have to enforce my rights and remind people of my condition, often publicly. I would be the supplicant again. And because I asked for help very late, after my first semester had already begun, the people working there do not seem to be very fond of me.

Being a Representative

As I already explained, I am a very shy person. I don't like being at the center of peoples' attention because of my disability. But, that is the only way people know me. My disability is a very big part of my public identity and accessibility is one of my personal goals. I am somewhat vocal of this in a small Social Media bubble, and when I get the opportunity, I give lightning talks on accessibility basics. However, this is all very superficial. Twitter and Mastodon aren't the right medium for longer elaborations, and my blog isn't read by anyone. So I often stick to tweeting what bothers me about disability life or inaccessibility. Contrary to some peoples' belief (they have messaged me about this), I don't tweet a lot, and I voice only things that I deem the least annoying for non-disabled people to read in a timeline full of bad news. If I would tweet everything all the time, you'd see several tweets per day about bad accessibility and I assure you that you'd be bothered very quickly. This is largely because it would always repeat itself. It's always the same little things that make my life difficult. The little things I have no control over, those I can't influence.

I have been part of my schools' student representation for a few months before graduating, trying to raise attention to these little things over and over, but have mostly experienced defensive arguments or annoyed students. They didn't deem these things worthy of investigation and fixing because they didn't see how it affected themselves. Themselves who of course are not disabled, not directly affected.

This has changed my personality in a way I am not happy about. It led me to start publically criticizing things I saw injustice in - without thinking about it much. I was on a spree of constantly insulting and annoying people with my demand for justice, information and accessibility that I have been craving for a long time, even on things not at all related. I was called “irresponsible”, “mad” and at some points even a “ticking time bomb”. This ultimately got me kicked from some communities I was an active part of, and nobody saw or tried to understand my reasoning. All they saw was me being unfriendly, impertinent and rude, disturbing their community peace. I get that, it is true and I continue to try my best to change. I wasn't a good representative of certain safe spaces and probably not a very good one of my own peer group. For many people, this image has stuck and I am probably still not welcome again.

However instead of learning from this experience and just stopping, I have been persuaded to join the student representation of my university faculty. I have been voted in with just eighteen votes, and haven't contributed much there, yet, because I am still trying to work out how to best work with the people there to have the result be less of a mess than I experienced previously. Until then, I will continue to be invisible. Having demands, wishes and ideas nobody else has - but I am likely not the right person to voice them. By the time I know how and where to be vocal, I will probably be close to cancelling my studies or already graduating, so I won't be much help to anyone.

There are no peers for me at university. Nobody who is going through exactly the same troubles as I am. Much like in school or other groups, I am in this all alone, with no one to talk to. Exploring roads that feel like no one has ever been on before. There are no role-models for me. There is no lobby for me. There probably will never be if I don't act - because I am in a position to do so. And let's face it, me being in this position is highly unlikely, statistically. All there is is me and the unknown paths. Nobody to represent but myself.

That is odd, considering I get a couple of emails and direct messages every week asking for digital accessibility advice, and me beginning a new job on exactly that matter soon. It seems like I am representing an even larger group this way - all visually impaired people in the world. I am not. I am speaking from a position that most of my peers have not and will never reach. I am stepping into unknown terrain, gathering valuable life lessons that might be useful for some, and based on these, hopefully enriching their lives.

I am happy to respond to all of the inquiries and share my knowledge as much as I can, but often there is no time to shed light on the implications and experiences that exist that back it up. It often feels like to me that accessibility in the eyes of the public is a very single edged sword, like a checklist you can work through to make things work. In reality, it is often not that easy. It requires patience, empathy and good connections to the right people who can tell you about their views and experiences. It requires non-disabled, self-proclaimed “accessibility experts” to take a step back, stop calling themselves that, and to actively promote the real experts. Those with the real-life experiences, like myself and countless others. This would give us the publicity we need for our demands. This could end the paternalism many of us have suffered from - by finally getting visible ourselves. In all of our colors, with all of our different opinions and backgrounds. We are people like everyone, and we make mistakes or are not helpful.

This isn't something I can do alone. I would even go as far as to say I won't be much help for this at all. I am not a good representative because I have nobody to represent but myself. All I can do is show people that it is possible to achieve tremendous things with a disability, and to be their role model I would have so desperately wished for. I am not the disabled person to solve everyone's problem, I am not a superhero even if saying things like these might make me look like one.

I am a normal techie that just so happens to be disabled, and caught in the illusion that the world could one day be a better and more inclusive space.

If you are in a similar situation, please get in touch with me. I am very interested in your story.