When things change or don’t change

If you have been following my blog, or social media or know me personally, you know I’m late deaf. I lost all my hearing 15 years ago and can’t hear even the loudest sound anymore. Before that, I was hard of hearing and getting by with hearing aids. But it was progressively getting worse until I became completely deaf.

Lipreading is at best a crutch when communicating one on one in short interactions. In the Netherlands we get text transcribers (or sign language translators) for meetings, congress, and what have you not. It’s covered by the government but you only get a set amount of hours. For personal use, you get only 30 hours a year and for work, it depends on how many hours a week you work, you’ll get a fraction of those hours assigned each year.

Being deaf out in the world sucks your energy. You need to be double aware of your surroundings, and put 100% effort and concentration into communication with others. It’s almost a top sport. You also have to spend lots of time arranging and booking a text transcriber for meetings, appointments and such. It doesn’t help that there is a big shortage of text transcribers (and sign language translators) so it happens often I can’t attend something because I don’t have a text transcriber. I sometimes even have to miss work meetings.

I have been attending frontend-dev conferences with the same text transcriber for years. One of the less than 5 that can transcribe English. Because the material is very technical and transcribing is not error proof it takes enormous brain energy to follow the text during talks. It’s also more tiring following text on a laptop in front of you, plus the slides on stage and the speaker. After attending a congress I need days to recover. A few times there were captions provided during the talks and those were much easier for me. Captions are on a screen on stage together with the slides and speaker, they are provided by people who understand the tech talk. I don’t have to arrange a text transcriber, it’s just me without having to take someone else into account to follow. This makes it more relaxed to take in.

A new obstacle

When I give talks about inclusive design, I always remind people. ‘Most people are not born with a disability but they get one later in life.’ Last summer I had a medical emergency. I was lucky I took action and had an ambulance called otherwise there is a chance I wouldn’t be typing this. This emergency had a side effect that caused tiny damage. My field of vision was affected. I didn’t lose it but it shifted. So now I can’t take a whole image/text whatever in one glance. I need to scan everything from left to right not to miss something.

So now I have an added obstacle next to being deaf. Reading transcribed text on the laptop now takes more energy. Text from afar is easier to read than close-up text. I’m still figuring things out together with professionals.

The first congress of the year has been announced. One that I have been attending for years. There will be no captions provided. I will have to ask if my text transcriber can transcribe those two days. But when I got the email announcement of the ticket sale. I just felt tired and defeated.

I like going but it always leaves me so drained from the energy it takes. And now I also have to take into account that my vision is a bit disturbed so it will be more work to follow the already hard-to-follow (remember non-tech people transcribing tech talk) text on the laptop. And I just…I’m tired. Tired of asking for captions to be standard at congresses so the barrier to attending is less. Tired of being willing to pay the price to attend but having to conform to barriers. Tired of feeling less valued.

Hence, now I’m struggling, shall I go and just deal with the huge energy drain and probably get frustrated? Shall I skip and deal with the FOMO? Shall I from now on only attend (expensive) congresses only if they provide captions?

Keep creating awareness

All this at least gives me the motivation to keep giving talks about inclusive design. I felt like my talk and subject were overdone. But it’s never done. It needs to be repeated until we actually have a more inclusive and accessible world.

I don’t feel I’m asking for too much. Especially in 2023. We all should be doing better to be more inclusive and accessible. The A11Y movement has been ongoing for years and the actual progress still lags behind considering how much it’s talked about and taught about.

In the meantime, I’m going to be kinder to myself and not feel like I need to attend everything or pay for things for which I get less in return than abled people. I’m going to try to focus and put my energy, time and money into things that give me joy rather than frustration.

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