Amara Open Thoughts: Alessandra and the struggle of a hard of hearing loved one

Amara Open Thoughts is a new series powered by the Participatory Culture Foundation and Amplifying Voices, where we share stories, listen to people, and give voice to our global community of change makers.

Guest post written by Alessandra Pace, volunteer and translator for Amara On Demand

Recently I lost one of the most important people to me, my dad Sergio, with whom I had walked this path of life so far. He was amazing and he left a void difficult to express in words, but having the opportunity of remembering him and sharing his story as a hard of hearing person is of great comfort to me.

In the last months my dad struggled hard against the disease which had been affecting him, and which took him away from his family so sudden and far too soon.

Along with his disease, he also had to face the challenges of his hearing loss which, in the very last period, had been getting worse making him almost completely deaf.

One of the many memories I treasure of my dad is that he was devoted to his job, he was very good at it, had great passion: he worked mainly as a qualified building surveyor, but his great creativity and his manual ability made him a brilliant designer and an expert handicraftsman. His last project, of which he was very proud of, was the restoration of the home we moved in about three years ago.

Around the second half of the 1960’s, after he graduated from school, my dad started his career collaborating with an Italian body of scientific research making topographic surveys, especially across Southern Italy, along the Appennines. It was during one of those “missions”, as they were called at the time, due to cold and the extreme weather conditions he was exposed to while working outdoor, that my dad had suffered from an ear infection which later made him partially deaf.

As hearing loss can occur for a variety of causes, on different occasions he was told by specialists that his, at that stage, had no treatment. 

This condition of disability, as experienced by my dad, involves each aspect of daily life: making a phone call, practicing a hobby like enjoying music or listening to the radio, or watching a TV program. They are simple activities for most of us, and my dad was impacted by all of it.

Referred to also as “invisible or hidden disability”, it finds in social interactions one of its tougher barriers: my dad often had to inform strangers who didn’t “notice” it, especially in public places, that he was hard of hearing.

Although across the years he found his own way to cope with his disability, this at the same time led him to avoid certain situations which amplified his discomfort as, for example, spending time indoor in crowded places which made him feel disoriented.

Besides, the outbreak of pandemic and the introduction of masks to prevent COVID-19 from spreading exacerbated my dad’s condition and that of millions of persons around the world with disabling hearing loss, who use lip reading to help them understand what people are saying.

Assistive technologies can represent a support for people with hearing loss but, unfortunately, my dad found little benefit from the hearing aids he wore, also from the most recent and cutting-edge ones he had put so much trust in.

When his hearing problems got even more severe, mostly in the last months, the headphones he had usually used to watch television were no longer of any help for him and, before the switchover of the Italian TV channels to HD, not all programs were provided with subtitles. Even if a wide variety of accessible contents are available on the web, it cannot be always expected from elderly persons to be online in order to enjoy them and, for those generations, television still represents one of their preferred devices. 

As soon as my dad could no longer talk on the phone though, he relied on technology and, in particular, on messaging apps to stay “in contact” with his family and his friends, but the sudden worsening of his disease and the therapy he was undergoing impeded his use also of that form of communication he had depended on till that moment.

Living close to a loved one affected by an impairment makes you aware of the limitations it imposes on them and of all those needs arising constantly in order to try to get over the obstacles they have to overcome.

For the love binding me to my dad, I wished I could at least alleviate somehow the hardship caused by his deafness, when he was already bearing the heavy burden of his disease.

I hope that sharing his personal experience can make more people realize which still standing barriers should be broken down, so as to reach a world that “in all its aspects” can be fully accessible to everyone, and where those who need it most should be listened to with greater empathy and understanding.

Guest post written by Alessandra Pace, volunteer and translator for Amara On Demand

“I’ve always been passionate about languages and finding an area in which I could apply and develop, in particular, my English knowledge was my dream since my high school years. Subtitling offered me at last what I’d been searching for so long and my personal involvement as the daughter of a hard of hearing person encouraged me even further on this way. 

I started in 2015 as a Quality Checker of subtitle files for one of the main streaming platforms and, since then, I’ve been specializing in this area of translation participating in different projects both as a translator and as a transcriber and, most recently, as a post-editor of machine translated subtitles. 

I joined Amara in 2017 as a volunteer first, and then as a member of the Amara On Demand Team. Being part of Amara has given me the opportunity of getting more confident in this job and, at the same time, getting familiar with a wide range of subject areas. 

Working as a subtitler is really rewarding. You effectively contribute to everyone having access to relevant video content that, otherwise, would be only of exclusive use.”