Alison Beck shares her personal journey of experiencing partial deafness, emphasizing the importance of recognizing hidden disabilities and advocating for inclusivity in churches.
I must have uttered these words hundreds of times in the last six years. Almost every day, I struggle to hear what someone is saying and I have to ask them to repeat themselves.
I’m partially deaf in one ear – caused by sudden, unexplained and irreversible nerve damage which started six years ago. Therefore, I’m a classic example of a person with a hidden disability who became disabled midway through their life. I’m writing this blog to share my personal story during Disability History Month. I hope that this piece encourages readers to reflect upon disabilities that are not always visible or obvious.
I was sitting in my bedroom one afternoon when all of a sudden, everything went quiet in one ear. My GP thought it was an ear infection and told me not to worry. After a year of confusion and stress, I was diagnosed with sudden sensorineural hearing loss.
As a professional musician, this was a huge strain. Not only could I not hear properly on gigs, constantly battling with what I called the ‘tiny flute player’ in my ear (intrusive tinnitus); I also had to deal with the judgment of others. In the music industry, not being able to hear properly is the ultimate taboo.
Eventually, I received a grant from the charity Help Musicians for a specialist musicians’ hearing aid. This has made a massive difference. I think of my hearing aid as a tool of radical inclusion. It gave me my confidence back. Through the app on my phone which connects to the hearing aid, I have the power to adjust the sound myself to get what I need without relying on the sound engineers or other musicians to help me.
To look at me you might not think ‘disabled’
I wonder if some people reading this, who are used to seeing me sing in church services or belt out a joyful solo with the Soul Sanctuary Gospel Choir, might find it weird or uncomfortable to think of me as disabled.
The term ‘disabled’ is perceived by some as having negative connotations; a bit of a downer, or even downright insulting. Some see the term as diminishing a person by focusing on their impairment rather than their whole self.
I don’t see it that way myself. While the medical model of disability regards people as disabled by their impairment, the social model of disability says that people are disabled by the barriers they face in society. When those barriers are removed, disabled people are able to participate fully and independently in society.
An example of barriers being removed – from my own experience – is captions on video footage. By switching on the subtitles on my TV, I’m able to enjoy the latest episode of my favourite show just as much as a fully hearing person can, because I can follow the dialogue. When organisations put captions on their videos on their websites and social media, I’m happy because it levels the playing field for me. (It’s also advantageous for everyone else; for instance, captions make video content accessible on a crowded train journey, when you want to watch but you can’t turn the sound up. This is a great example of accessible adjustments being a win-win for everyone!) Sadly though, this doesn’t always happen.
It is exhausting to ask for adjustments
Having hearing loss can be exhausting. The physical effort of straining to hear can leave me wiped out. Also, repeatedly having to ask for adjustments to be made to enable me to fully participate in life can be tiring and discouraging – requiring me to reveal my hearing loss (sometimes to total strangers) and re-live one of the most challenging experiences of my life, over and over again.
I’ve had several experiences of asking organisations (including churches) to add captions to their videos and just being ignored. I find it demoralising to ask nicely, repeatedly, and to be met with silence. It makes me feel like my access needs are optional and unimportant. Also, my own internalised ableism means I feel guilty for bothering busy people and asking them to do extra work for me…
In a truly inclusive society, things would be set up in such a way that any disabled person was enabled (not dis-abled) to enjoy life on equal terms with others, without even having to ask.
The Church as a haven
I would really love the Church (by which I mean churches in general, including ours) to be a shining beacon of inclusion for all disabled people. I strongly believe churches should be a haven; a model for society at large. One example is Wave Church in Muswell Hill, where people with and without learning disabilities come together to worship, with singing, Makaton signing and creative teaching. To me, it sounds like a touch of the Kingdom of Heaven on earth.
One of the things I love most about Jesus is that he prioritised hanging out with those who were excluded or looked down on by society. Many esteemed disabled theologians have written powerfully about this, far better than I could.
Jesus also had a passion for healing people. I have complicated feelings about this. If I was offered the chance to get my hearing back, I would have to think about it. Obviously, most of me would jump at the opportunity. But my disability has become an essential part of my identity now. Becoming disabled has opened my eyes to how certain social groups are disadvantaged; I’ve experienced first-hand the pain this creates. My own lived experience has fired up my determination to do whatever I can to fight inequality in all its forms. Before this happened to me, I was a typical unaware non-disabled person. I’m also aware that I still have so much to learn, especially from activists who have been fighting for justice for decades.
So what can we do?
Let’s be real – it is not easy to become a truly accessible church. For a start, different people’s access needs are sometimes diametrically opposed. Also, it can cost a ton of money to pay for things like decent sound systems and sign language interpreters. But I would love our community to give it a real go. I know that lots of people in the church are passionate about making this happen. Please talk to anyone in the clergy or on the PCC (including me!) if you want to discuss any of this further.
As for me, I’m going to stop saying “sorry, I’m a bit deaf” – because there is nothing to apologise for.