Why I am not a Victim

Something that most people I meet learn sooner or later is that I am deaf.

That’s right, my hearing is not great.

Many people don’t realise, partly because, in case you haven’t noticed,  my hair is quite long and covers my ears! (Though I didn’t grow it to hide that I’m deaf; I wanted to be like Aragorn).

For more pictures of me with long hair, follow me on Instagram @samuelsthorp

I was born with bilateral sensorineural hearing loss, ie. I’m partially deaf in both ears. In fact one of my earlier memories is of going to the hospital with my parents to get my first hearing aids when I was around four years old. I took my favourite toy, a small toy of the Disney character Goofy, with me and the audiologist who gave me my hearing aids gave Goofy a hearing aid too! Rather than having an earmold he had a small piece of elastic which went through the tubing to hold it onto his ear. This helped to normalise having hearing aids.

Growing up as a child with hearing problems meant I had regular trips to the hospital.  Just as small children grow and go through a million pairs of shoes, as I grew I needed new earmolds which would fit. When earmolds get too small, or worn down through lots of use, the seal in the ear isn’t good enough and you start to get feedback – a loud annoying whistley squeaky noise! These trips to the hospital would often have long waiting times and that would be a day off of school. I didn’t miss any long chunks off of school, just a day here and there every few months. It was years before I ever had a school year with full attendance.

My parents were great. They have fought for me to have all the appropriate support I’ve needed for school. From liaising with the teacher for the deaf (an external person that supports deaf children and visits them in their schools) to help me have radio aids (a device which works kind of like a walkie-talkie; the teacher wears a microphone, often around their neck, and the student wears a receiver which plus into their hearing aids so that they can hear the teacher directly through the radio aid rather than being unable to hear them over the sound of the rest of the class) to investing in a caption reader which could display subtitles for films on VCR.

However,  as great as my parents were and as much as they loved me,
I was still different from my classmates.

In fact, films are a great example of one of the struggles I experienced as a child growing up. With subtitles they were fine. But without… well even today I rarely hear or follow all the dialogue in a film at the cinema (I saw Suicide Squad yesterday and loved it, but am looking forward to watching it with subtitles in future to pick up the several bits I missed). This means that where possible I often ask if it’s possible to put subtitles on. However many people, and particularly children, who aren’t used to it complain that it’s annoying and don’t want to have subtitles on. On those occasions it would often feel embarrassing or awkward. As if either I could ask so that I could join in and enjoy the film but risk spoiling it for others, or let them enjoy it without creating a fuss and probably miss out on dialogue and the ensuing in-jokes that form when a group watches a film together.

It wasn’t just films that being deaf made harder, but also general group conversations. I would routinely be unable to hear something and when I’d ask someone to repeat what they, or someone else, had said they’d often reply with “Don’t worry, it doesn’t matter”. This would happen in class, on the playground, on the bus, and even today in pubs.

In these ways and others, being deaf has often been an isolating experience.

I think that as I was growing up I generally handled it pretty well. However I do remember a couple of occasions where it would really get to me.

I remember sitting with my parents in the living room and crying my eyes out and telling them that I wish wish wished that I wasn’t born deaf!

I can’t imagine how it would have felt to be my parents. By some genetic lottery their son was born disabled. They could love him and support him with everything they had, and it would help, but at the end of the day when I was crying and upset they were powerless to change the simple fact that my ears would never hear properly. As I say, I can’t imagine how it would feel to be a parent in that situation. But what I can say is that they were the best I could have asked for in that situation. They never treated me as if my disability were any cause to think less of me, because for them I was and am their son who they love.

One day we were at church and we were singing a hymn with the words on a screen using an Over Head Projector and I leaned over to my Mum and commented that it was hard to see it today. Within a couple of weeks I’d been to the opticians and had my first pair of glasses. In and of itself, having to wear glasses is no great hardship, but knowing that you can’t see or hear without some form of assistance was often a fairly sobering reality which I would privately have to wrestle with.

Growing up I went to several Christian summer camps. Week long residentials packed with fun activities and bible teaching to encourage children and teens in their faith. When I was in my early teens I was given the opportunity to sign up to go on a couple of weekend residentials to do similar things with other deaf people my age. I remember talking to my parents about this and looking through the promotional leaflets. It looked good. There would be rock climbing and high ropes courses and other activities I knew I’d enjoy. Yet the idea of going on a residential for Deaf people didn’t sit easily with me. In part, I suppose, because whilst I’m deaf I’ve never learnt sign language. Why would I? I personally never needed to in order to communicate. Part of me felt awkward about the idea of spending time with people who would be signing when I couldn’t sign. But another part of me knew that it wasn’t just that. Not long before this opportunity I’d been to the same place for a weekend residential but on that occasion it had been with other teens whose parents were clergy (my father has been curate and then a vicar all my life). It had been good to do the activities I enjoy doing, but I’d come away from that weekend realising that apart from our parents having the same career I had nothing in common with the other people on that particular residential. Why, then,  would I automatically have something in common with other people who are deaf?

I decided I didn’t want to go, and my parents were supportive of that.

On a personal level it was probably around then that my attitude towards being deaf became defined more concretely in my mind.

I am a person who is deaf. I am not a deaf person. 

Life carried on. I continued to grow up with deafness being a reality and a part of my daily ritual. I put my hearing aid in when I wake up, and I take it out when I go to bed. I have hospital check ups and I get new earmolds and I get new packs of batteries. It has crossed my mind on more than one occasion that should there ever be some form of national tragedy or emergency then my hearing will be limited to however long my supply of batteries lasts (not a major worry but a valid consideration).

During this time I had glue ear in my right ear. This is a build up of liquid in the eardrum which dampens the amount of noise which the ear can hear. I had surgery insert grommits to try and fix it, but had a really bad infection which could be smelt from a distance at school. I then had surgery to remove the grommits and the consultants decided to see if I would grow out of it. Nearly ten years later, it’s still an issue. The affect on my right ear is such that I no longer wear a hearing aid in my right ear because it doesn’t make enough of a difference to my hearing to be worth it.

I eventually ended up studying for my degree in Theology and sharing a room brought to light new ways in which my deafness affects me. I used an alarm clock with a vibrating pad under my pillow to wake me up, because I wouldn’t necessarily hear an alarm. There was about a week where my hearing aid wasn’t working and my roommate made the most of sneaking into the room and playfully insulting me behind my back, gradually getting louder until I jumped out of my skin when I suddenly realised he was right behind me – and had been for a while!

It was whilst I was in my final year of my degree that I had a problem with my eyes.

Towards the end of November I found that I was increasing the zoom on the monitor of my computer to read it properly. I set my phone to the largest font size and tried to do the reading for an essay that was due before the Christmas vacation. But my eyes were getting worse. I was getting a fuzzy pixelisation on the edge of my vision.

I spoke to my former roommate and he agreed to drive me to the local A&E to get them to have a look. They saw me and then sent me straight to Moorfields eye hospital in central London. I went and was met by a couple of my cousins who went with me. I was seen quickly (it was a Sunday which helped). They said it was something or another (pseudopapilledema). I had a note and got an extension for my essay.

At this point I could barely read.

I went home to my parents for Christmas and went to the opticians to get an up to date prescription to help as best as possible. She had a good look at my eyes and wasn’t convinced by the diagnosis. She thought it might be optic disc drusen. Any which way, I was referred to my local hospital who saw me quickly. Between Christmas and the new year I was supposed to be doing my essay to hand in when I got back to university at the end of the first week of January. During that time I had several appointments and visits to the consultant.  I had photos of the back of my eyes. I had an ultrasound on my eyes (a bizarre sensation) and then it concluded with an MRI scan to check that there wasn’t a tumour in my brain pressing on the optic nerve causing the issues with my eye sight.

There wasn’t.

My optician’s suggestion proved to be correct. I had optic disc drusen.

The good news,  I didn’t have a tumour and wasn’t about to die.

The bad news, there’s no cure and I may be disqualified from driving. First there would be more tests.

Briefly, optic disc drusen is essentially a condition where you end up with a couple of dead cells which end up in the optic nerve which in turn creates pressure on the surface of the optic nerve which affects the way that light enters the nerve and so creates visual disturbances.* Occasionally these dead cells can move within the nerve and that causes a change in pressure, which causes a fluctuation in the visual disturbance. The main risk for me personally is that these disturbances will affect enough of my peripheral vision to prohibit me from driving.

Before I had the relevant tests which concluded that my eyes are good enough to drive, I had to finish off the essay. By the time I’d had all the tests, my vision was starting to normalise and I could read again. I wrote the vast majority of the essay between the MRI and receiving the results. I returned to university and submitted the essay, glad to be rid of it. It would have been easy to write it off as a casualty of circumstance, but actually that essay got the highest mark of my degree.

The final year of my degree was also an emotional struggle because during  February my grandfather passed away. This was difficult not just for myself, but for the entire family.

However, throughout my final year, complete with the stress of my medical issues and the bereavement, I managed to lift my grade average up from my second year by an entire grade boundary; resulting in a First Class Honours degree in Theology.

I have issues with my ears.

I have issues with my eyes.

However through the love and support of my parents, my family and by friends I have grown to identify as Samuel.

I don’t place my value and my identity in my disabilities or the events which have happened to me.

I personally do not consider myself as a disabled person.

More than that, I do not consider myself a Victim. 

All too often in today’s cultural discourse it seems that opinions and even arguments are considered more valid by virtue of an appeal to authority. This authority doesn’t necessarily equate to authority in the sense of an expert in a relevant field with a doctorate, with years of professional experience, or as an eyewitness to an event. Instead it often correlates to a person who shares experience, circumstance or heritage with another person or topic. This association is primarily categorical rather than genuninely relevant.

In essence, a lot of today’s cultural (or perhaps I should say internet) discourse plays the game of identity politics; a game where the trump card is ‘victimhood’.

This rhetoric leads to the disingenuous idea that:

  • to speak about feminism you must be female
  • to speak about racism you must be a person of colour
  • to speak about homophobia you must be gay, lesbian or bisexual 
  • to speak about transphobia you must be a transperson
  • to speak about Islam you must be a muslim
  • to speak about obesity you must be fat
  • to speak about class you must be poor
  • to speak about disability you must be disabled 

All of these are predicated upon the notion that a categorical association with a ‘community’ which is perceived to be oppressed or marginalised somehow lends a social currency to an individual which makes them more credible than someone who is not associated with that community.

This culture encourages us to focus on that which gives us credibility, which means that the most credible people are those who are minorities and then it’s their allies.

This means that to be credible you need ‘ an angle’.

Or in other words, to focus on a distinguishing characteristic or trait to gain a voice in the conversation.

There are two issues with this.

  • It reduces people to the sum of their parts, rather than treating them as authentic person in their own right.
  •  It is exclusive and polarises rather than promoting tolerance and productive dialogue.

How can I say that identity politics reduces people to the sum of their parts? That it is intolerant?

I am deaf. I have just shared some of the struggles and experiences I have had in relation to that part of my identity. I do not deny that I am deaf. It is my daily reality. But I am more than my deafness.

Those who are black are black. They have their own experiences and struggles and whenever they look in the mirror they will still be black. But they may not support #BlackLivesMatter or the might be politically conservative. They may well be black but to define their ideological affiliation with the colour of their skin is to diminish them as independent human beings. They are more than their race.

Women are women. They have their own stories and relationships and make their own choices about their lives. They may not identify as a feminist. They may not believe in the patriarchy or they may be pro-life. They may run for president of the united states or enter STEM based careers or they may be nurses or mothers. They are more than their vaginas.

There are those whose sexuality and/or gender identity gets them labelled as LGBT+. Each one has their own story of how they discovered  and engaged that aspect of their identity. Each one has their own story of how their families and friends responded to them; positively or negatively. Their romantic patterns of behaviour will be as varied as any one who’s sexuality is heteronormative, with a single partner or many. Their political and religious views cannot be determined by orientation. They are more than their sexuality.

This is not to preclude the importance or significance of those who are oppressed speaking up against injustice.

As a Christian I cannot lose sight of the numerous times scripture tells us that God watches over the stranger and sustains the orphans and the widows whilst frustrating the plans of the wicked.

I also cannot lose sight of the fact that when God himself walked the earth as Jesus Christ of Nazareth that he ate with and embraced sinners. It was the tax collectors (the capitalists), the lepers (the disabled), the prostitutes and adulterers (sluts and LGBT), the gentiles (people of colour and migrants) and the fishermen (the white males).

The Lord of creation, the God of the righteous, embraced the whole of humanity with all of our discrimination and labels and prejudices and died on the cross for both the oppressed and the oppressor. In his resurrection, Jesus establishes an eternal reconciliation between God and his creation, between humanity and himself; within this reconciliation we see the embodiment of a peace which affirms the differences of those which have now been, and will be, irrevocably joined together.

In the face of this hope to play the game of identity politics is to prioritise the marginalisation and reduction of individuals, rather than to honour and engage with them as whole persons.

I am many things.

I am a Christian.
I am a metalhead.
I have struggled.
I am a theologian.
I have long hair.
I am deaf.
I am white.
I am adventurous.
I am young.
I am english.
I have imagination.

I am Samuel.

But,

I am not a Victim.

 


*I am not a doctor, it’s a bit more complicated than this but in essence this is how it works.

Advertisements

2 thoughts on “Why I am not a Victim

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s