Whenever I write about deafness, I feel like I must write a disclaimer. Since posting yesterday’s post, it has gone over in my head many times. The thing is, the variety of the deaf experience means that my experience is not the same for others, and vice versa. We experience many of the same daily barriers, but our individual deaf experience can be vastly different.
If I write about my cochlear implant, it is another time when I feel like a huge disclaimer should be slapped on. Growing up, I had no intention of even considering a cochlear implant for myself; not because they are not helpful – they are, for some – but mostly because I was once misinformed, and also happy with the way I experienced the world around me. A cochlear implant is a huge decision, with risks. It is not a cure. I do not ever want a cure, I have no need to be medically fixed.
I am deaf, I love being deaf, for the most part. The times I struggle the most are the times when society disables me. I have come to realise, in recent months, that the very experience I have tried and failed to put into words for years is the social model of disability. The following words, from Scope, articulate what it means perfectly:
The social model of disability is a way of viewing the world, developed by disabled people. The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.
The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.
Not everyone uses the social model and that’s ok.
The barriers have been scattered across my whole life. They will be scattered further still, I know, but I can keep dreaming and fighting for a more equal world.
During my walk earlier, as night was falling, I was watching life move around me. It made me think about how visual my world is. Whilst I have my cochlear implant, I still need to watch the world around me constantly; from the sound alone, I would not be able to tell where it is coming from. A car slowed down to a stop, I heard and then saw the light casted from another car’s headlights moving on the road; from these clues I knew a car was coming from the other direction and the car I could see ahead of me was waiting to let it pass. I must always look over my shoulder before I cross the road at a T-junction – it is smart to do this, anyway, but I must as I would not know if a car was approaching.
Sound with my cochlear implant has no sense of direction, it could be coming from anywhere. I have many funny stories of wandering around like a detective to figure out the source of sounds, especially at home. The visual is still a big part of my life. Almost daily I ask the boy, what is that sound? Usually I know what a sound is, sometimes I can guess at what a sound is, other times I think I know what it is but just want to check, then there are some sounds where I just have to go what the heck is that?!
My deafness is something I wear every single day. I cannot put it safely in a box, it comes with me everywhere. There are no moments in which I can choose to be deaf or not. I have a toolbox full of tools, and I am incredibly adept at knowing which tools to apply to which situations. I am lucky in that I can speak and understand speech, for the most part, with the help of lipreading and now my cochlear implant. Lipreading is hard work, though; approximately, it is roughly only 30% of words that are being successfully read – the rest of it is a complicated operation going on at the same time to guess and piece together the words. It can be exhausting. Which is why another tool in my box is a whole other language, BSL, British Sign Language. This is something I can only whip out in certain situations, but it is a huge relief when I can.
Online accessibility is another important topic, one which I may well cover in another post entirely. The most important thing, from a deaf perspective, is the use of captions. It is an ongoing, daily fight to help people understand the importance of adding captions to their video content online. There are some really amazing people advocating for the access rights of many other deaf people, which is why I think it should be covered in a separate post; I want to spotlight their work.
To be deaf is not a loss, it is a gain.