Today is the International Day for the Rights of People with Disabilities (IDPWD). This year’s theme is “Not all disabilities are visible”. What does this mean? Well, in a narrower sense, it means that I will join the international disability pride and awareness movement by wearing purple #purpleLightUp. Even my guide dog has a little purple bandana that says “disability pride IDPWD”. But this day and this year’s theme mean more than wearing purple and standing in solidarity with the disability community for a day. It’s about the past and continuos fight of disabled people around the world for equal rights, for being granted human rights and overall against disableism and ableism. Through my lived experience and my work with disabled people in some of the poorest countries in the world, I can assure everyone who believes otherwise: there is still lots to do before we can even think about calling our global society inclusive.
This year’s theme also made me reflect on my experience of and with disability. Sight impairments are sometimes considered invisible disabilities as they can be hidden from the wider public. There are many discussions about the difference between an invisble and a visible disability. I have experienced that myself. When I was younger, and I guess all the way to my late twenties, I had a (mostly) invisible disability: I was first partially than severely visually impaired but you wouldn’t have known by just seeing me walking down the road: I didn’t use a cane, a guide dog, or any other assistive technology. The only assistive technology I originally used was a magnifying glass, then an electric magnifying glass and then at some points reading machine. But of course, I wasn’t carrying those down the road. Back then, I kept thinking I could “disappear into the crowd”. If I wanted to, I could simply walk through the high street, an airport or whereever I was and nobody would have the faintest idea that I was visually impaired. At that time, my eyesight was 30% at best.
Looking back, it was a strange feeling. I was disabled and knew it since I was 11 years old but I could pretend not to be. This pretence was possible because everyone around me pretended with me—they did not know, could not know and therefore treated me like any other teenager or tweeny. This then put any experience of ableism in stark contrast. When people found out – I never kept it a secret but was very upfront with it – they would sometimes actually walk away from me or break up a conversation. People would say odd things like “you don’t look disabled ” – something that, to this day, I still don’t understand what it’s supposed to mean.
Sometimes – many times – people would not take my disability seriously. They would say things like “it cant be that bad, you’re doing really well and do so many things”. BTW, note to those who are non-disabled: Just because we do well , does not mean it’s easy. Others would think I was telling rude jokes. I remember one day, I was sixteen or so, I stood at a tram station waiting for my tram to go home after school. I used that tram stop even though it was further away from school as all trams there went to the stop I needed, so I wouldn’t accidentally get on the wrong tram. An elderly woman came up to me and asked which bus was coming up to the bus stop. I told her that I didn’t know as I was visually impaired. She started telling me off for being distasteful in my jokes and then told someone else at the bus stop that “youth today are so rude”. Looking back, I appreciate there was no visible sign that I was visually impaired. That still doesn’t mean that I was making it up and playing some awful prank on that woman. This was one of many such situations. I remember them all even years later… .
My eyesight dropped further and further as I have previously written about. I had a few (too) close calls with cars, bikes, lantern posts. I would change my study set up, my parents bought me a very expensive reading machine to help me through my postgraduate degree and my then boyfriend (now husband) spent his free time reading my course work materials to me. I used magnification on my phone (literally a magnifying glass on top of the mobile phone) and once it was available, I used dictation and magnification software on my laptop and so forth. Yet, using a cane or getting a guide dog was always something I didn’t really consider.
I bought a cane at some point but didn’t like walking with it. It made me tired, the thing got stuck in the cobbled stones of the medieval town I lived in back then. When it came to a guide dog, I thought about all the holidays I wanted to go on – safaris especially – and that I couldn’t really take a guide dog on a safari. I never had a dog – or any pet for that matter – and just thought about all the work that feeding them and walking them would cause. It Just seemed like a lot of work and restrictions on my life.
I was so wrong but that’s a different story. 🙂
Looking back, I realise now that these were distractions from the actual decision I had to make. I think what I was most worried about was becoming fully visible as a disabled person, to loose my ability to “disappear in the crowd”, and always stand out. This simple plastic and string construct that is the white cane can sometimes feel like wearing a huge sign on top of you with a massive neon-blinking arrow saying “look everyone, this one has a disability”. This is even more the case when walking with a guide dog. As a disabled woman who has experienced harassment, I was even more worried. I never fully feel safe walking around and I worried that if I walked with a cane, it would be a sign that reads “look easy target coming up”. This is not an unfounded fear, disabled women are more likely to experience harassment and abuse. At some point – when my eyesight dropped further and it became extremely dangerous – , I became visible. Things have changed and stayed the same at the same time. Some things are easier as my cute little guide dog munchkins makes it obvious to – at least most – people that I have a disability and might require help. I don’t have to argue with people as much about actually having a disability. Yet, it also means that I am stared at a lot – I mean A LOT. People feel they can simply touch me or drag me around, don’t need to talk to me but can ask others – sometimes even random strangers – what I need or like, or being told how amazing I am for simply buying a hot chocolate or sitting on a train.
As a society, we need to recognise that most disabilities or parts of visible disabilities are invisible. This does not mean they don’t exist or don’t cause people challenges. They are real. For me, it is still only the visual disability, my blindness that is now more visible. The side effects I still experience: the headaches and eye pains, however, are still invisible and therefore don’t exist in the eyes of many. They are discounted and of course: “They can’t be that bad, you are doing so many things”.
Ever since I started using assistive technology publicly, ableism is a constant companion. This is why today is such an important day: we need to get rid of ableism once and for all!