Deafblind Awareness Week 2017 – My Experience With Dual Sensory Impairment

Hey everyone,

 

Appologies for the lack of posts so far this year. I’ve been busy just getting through life and dealing with people’s assorted forms of bigotry and nonsense.

 

Today is the start of Deafblind Awareness Week, so it seems like a good time to share some of my experiences of dual sensory impairment.

 

I’ve had very low vision for as long as I can remember. I don’t have any clear memories of all of the running around to doctors and specialists in the early days. From what I was told, it took a while to get a diagnosis, and when I did, it turned out to be incorrect. The ophthalmologist I saw throughout most of my childhood got carried away about a couple of observed symptoms and decided my case was exactly the same as a patient he’d seen just before my first appointment with him, and so diagnosed my condition as Rod Monochromatism. As far as I’m aware, he didn’t actually do any tests at all.

 

As time went on, I realised that people’s expectations of what I could see were very different to my own experiences. Around the time I started school, I was given these thick red glasses that I was told would make me see better. I wore them for a while, partly because they helped with my photophobia, and partly because I liked the colour. (Red has always been the colour I’m most able to see.) When I was six years old, I had an experience at school that made it clear to me that the glasses weren’t helping. I was eating my lunch at an outside table and looking around me, wondering where the duty teacher was. Frustrated, I took off my glasses and looked around me again. Suddenly, I could see the vague shapes that must be other tables with other kids at them, and a sort of person shape that was too tall to be another kid, so must be the duty teacher.

 

For years after that, I would ask more and more questions about my diagnosis, and try to explain what my experiences of my own vision actually were. It seems like most people don’t want to hear what a kid might have to say about their own life (something I also faced in other areas of my life). Twice that I am aware of, my vision has slightly deteriorated. The first drop in vision was around the time I started primary school. Before school, with much struggling and staring at the page, I could identify the letters in one of those large print alphabet books with the big pictures in it. Some of the pictures were a fuzzy mess to me, but some I could recognise the shape. I started learning Braille as soon as I started school. The second small drop in vision was when I was about 16 years old and had just started going to TAFE. The ophthalmologist had suggested my vision would stay the same, but this was likely because he had decided by then that I didn’t have any functional vision.

 

I asked around and found another ophthalmologist who seemed to have a good reputation, (not that reputation meant much to me at this point since everyone seemed to think my previous ophthalmologist was brilliant). Anyway, the new guy sent me off for all kinds of tests and eventually decided on a diagnosis of Retinitis Pigmentosa (RP). The symptoms of RP fit better with what I can see. I’m not sure it explains everything about my vision, but it’s the closest diagnosis I’ve had, so I’m fine with that at least for now.

 

Somewhere around the age of 18 or 19, (it’s hard to remember exactly when), I started losing my hearing. It was getting harder and harder for me to communicate with people, especially if there was background noise. Despite the suggestions of a lot of people around me, it took me a long time to get my hearing tested. Because of my vision impairment, I had always relied a lot on my hearing, and I was in denial that there was anything wrong. Then something happened that dragged me out of denial and convinced me to get my hearing tested. I was hit by a car that was driving the wrong way down a one-way street. Fortunately the car was moving slowly, but no, the driver didn’t stop to check if I was ok. I was a bit sore for a while but didn’t seem to have any significant injuries and didn’t go to get myself checked out.

 

Not long after that, I went and got my hearing tested. The results weren’t good, and every subsequent test had worse and worse results. I was given two rather large hearing aids with those big chunky moulds that fill the whole ear. It took me a while to adjust to wearing them. I didn’t realise how much I’d got used to things being so quiet. After getting hearing aids, sensory overload was a regular problem for me. One day I was sitting outside with a friend from work. I’d moved house not long after starting to lose my hearing. I put my hearing aids in and said to my mate, “Wow! There are birds in this suburb after all!” I’d lived in the suburb for months without ever hearing birds.

 

Because my vision impairment had been diagnosed as RP, everyone involved in my healthcare seemed sure that I had Usher Syndrome. They seemed to become more convinced of this as my hearing got worse. Somewhere along the way I was warned that I could end up losing the rest of both my vision and hearing. This scared the absolute shit out of me. Having my ears filled up with some kind of putty so they could get the shape of my ears for the hearing aid moulds gave me a glimpse of what it would be like to be even more deaf than I already was, and it was terrifying. Someone suggested that I do some training under blindfold to prepare myself for the possibility of losing the rest of my vision, and I refused. That too was terrifying.

 

Eventually the subject was raised of my having the option to get a cochlear implant. I really didn’t understand much about how the implant worked or any risks involved, but I was losing my hearing fast and seemed to be out of options. There should have been more effort put into getting informed consent from a patient with dual sensory impairment. I only heard part of what was said to me in appointments, and rarely (if ever) had a support person present.

 

I’ll try to leave out any waffling and unnecessary details. Anyway, I ended up getting a cochlear implant. Fortunately, for some reason which was probably told to me without me hearing it, they only did an implant on the left side because my hearing was slightly worse on that side. I don’t know if they planned to see if that was successful and then do the right. The implant didn’t work. I was unable to learn to recognise any of the sounds that came from it. All of the specialists seemed baffled. Going through all of the stress of surgery for nothing was effecting my mental health. Communication after the implant was more of a struggle than before it. There was a bit of residual hearing in my left ear, but it was even worse as a result of the surgery.

 

Much to everyone’s confusion, and especially mine, the hearing in my right ear gradually started to improve. This is when all of the specialists realised they might have been headed down completely the wrong track. One of the specialists sent me off to see a psychiatrist who he had discussed my case with. It turned out my hearing loss was caused by Conversion Disorder, also known as Functional Neurological Disorder. This is a condition where trauma or psychological distress is converted into physical symptoms that have no other medical explanation.

 

It took maybe a couple of years for my right ear to have test results in the normal range, and another couple of years for my left ear to improve to just a mild hearing loss. For a while I stopped wearing hearing aids, but I still struggled in some settings. I now wear a hearing aid in my left ear. Hearing less in one ear than the other can really interfere with my sense of direction and distance. Think of it like how if you can see a bit less in one eye than the other it messes with your depth perception. Having a hearing aid really improves this for me. For some reason I am still often prone to sensory overload. My vision seems to have stayed the same for quite a long time now, but there’s no way of knowing if it will deteriorate further until it happens. As far as I know, it’s possible for my conversion disorder to relapse and for me to lose hearing again, but it’s been stable for a few years now and I’m hoping it stays that way.

 

I was surprised and a little bit confused when I was recently invited to get involved in the local deafblind community. It had been quite a few years since I had thought of myself as deaf, and so I worried that I would be an outsider. However, the community seems to be made up of people with varying degrees of deafblindness. We still have shared experiences of the issues that are specific to having a dual sensory impairment. In the future, I am hoping to take on some voluntary work in the deafblind community.

 

I’m not sharing this as inspiration porn or pity porn. I’m just sharing it as one person’s experience, to help raise awareness of the many different experiences people may have of deafblindness.

 

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All I Want for Christmas is Two Less Moobs

Does anyone remember that song that goes “all I want for Christmas is my two front teeth”? Well, if I was to rewrite the song for myself it would go something like “all I want for Christmas is two less moobs”. The last time I did anything for Christmas was in 2012, and even that year I told family we could catch up but I couldn’t afford to do presents.

 

The next step in my medical transition from female to male is top surgery (chest reconstructive surgery). I’ve been saving for this for over five years, and as time has gone on my saving has gotten stricter. The only thing I spend money on that I could call fun is my gym membership, and I didn’t initially decide to do that because I enjoyed it. I needed to get down to a healthier weight and build up a bit of muscle to get the best possible results from surgery. Fortunately it turned out that I do actually enjoy going to the gym.

 

The only present I wish for this Christmas is a bit of help with saving for top surgery. I started a GoFundMe campaign a few months ago, and I really appreciate the few donations I’ve received. If anyone wants to give me anything for Christmas, this is the thing that would have a huge impact on my life. It’s a present that will last me a lifetime. The dysphoria I experience constantly because of having parts of my body that don’t match my identity really messes with my mental health.

 

Also, if anyone would be happy to share the link to my GoFundMe campaign on their own blog or facebook page or twitter feed or anywhere else you can think of, that would be really awesome. Thanks for your support.

 

Here’s the link:

gofundme.com/2fnzk8es

 

The Motivation That Started My Fitness Journey

Some people seem to be able to jump straight into regular exercise, purely for the fun of it. Personally, maybe because of struggling with long-term mental illness, I often need to find a reason to convince myself to do things. So why am I spending so much time in the gym?

 

Since 2010, it’s been my goal to get top surgery (chest reconstructive surgery) as part of my transition. I started testosterone injections in February 2013, and between the increased appetite from the change in hormones, side-effects from other medications, and mental health issues, I put on quite a lot of weight.

 

It wasn’t really until some time in 2014 that I decided I needed to do something about getting into better shape. I realized that if I was going to get the best possible results from top surgery, I needed to lose some weight and at least tone up my muscles a bit.

At first, the only changes I made were going for walks a few times a week and eating less junkfood. I ate more fresh fruits and veggies, and cut down the sugar and fat and simple carbs. I walked around my local area for about an hour at least three times a week, as well as all the walking I end up doing because of relying on public transport. I started trying not to sit for too long without getting up and moving around a bit. Just with these few small changes, I lost about 18kg in a bit under a year and a half.

 

As often happens, things gradually slowed down, and I realized I would have to do something different if I wanted to keep making progress. I decided it was time to join a gym. Fortunately, I managed to find one where the staff are really positive and friendly and supportive.

 

I wanted to focus on building up my pecs, because I thought that would give me the best results after top surgery. It didn’t take me long to realise it was important to work on all of my muscles. At first, I can’t say it was exactly fun. I hadn’t been in a gym for at least a few years, and I was quite unfit. A few sessions with a personal trainer helped me get started on the right track and kept me motivated through the initial slog.

 

After a while, I actually started enjoying training. I got competitive with myself, trying to get better and better at each new exercise I learned. In the last 16 months, I’ve made quite a bit of progress, but still have a lot of work ahead of me. Getting top surgery won’t be the end of my fitness journey. In fact, given how much more comfortable I’ll be with my body, it will likely be the beginning of something bigger and better.

 

Transgender Day of Rememberance (TDOR) 2016

Today is International Transgender Day of Rememberance (TDOR). It is the day we remember those of us who have lost our lives because of who we are. There are events all around the world where people light candles and read out the list of the names of our dead. Some of these people were murdered, and some were as good as murdered and took their own lives because of the abuse they received because of their identity.

 

So, why am I not at my local TDOR event right now? It’s supposed to be my own community, right?

 

The trans community here has not felt like a safe space for me for quite a few years now for a number of reasons. You’d expect that such a marginalized group of people would look out for each other, but they don’t. There were a lot of power games going on, and even when they weren’t directly being abusive towards me, I couldn’t put up with the way they were treating others. I felt on the outside because of being a person with disability. Maybe another day I’ll go into more depth about things that I’ve dealt with from what was supposed to be my community. Despite this issues, I had been seriously considering attending TDOR this year.

 

Feast Festival, which is the local “lgbt” festival, usually has the TDOR event as part of the festival. However, this year, their closing party was a couple of weeks ago. This is just one of many indications that they’re really only an “lgb” festival that tries to make people think it’s more inclusive than it actually is. They do mention TDOR in the feast guide for this year, but the accessibility section of the guide shows that they didn’t even care about making it accessible to people with disabilities, so there goes my plans for attending.

 

I’ve felt for a long time like I don’t have a community, and then things like this happen to confirm that I really don’t.

 

A Short Poem About Apathy

I wrote this poem a few years ago, and thought I’d share it here. I haven’t done much creative writing for quite a while now. I don’t remember exactly what thoughts or events led to me writing this, but I think it’s just as relevant now as when I wrote it.

 

 

 

A PATHETIC APATHY

 

 

Some people have almost no regard

At all for their surroundings,

They’re self-absorbed, disinterested

And don’t much care for those around them.

Turning a blind eye to corruption

When comes time for the next election,

Their leaders they willingly follow

And the usual empty promises swallow.

They’ll vote for the government in fashion.

 

On what do they base their decisions? Is it anything more than tradition?

So many promises never kept

Under the carpet promptly swept.

So many questions to be asked

But that’s always somebody else’s task.

How can they observe and not react?

While lies are being presented as facts.

In blissful ignorance they bask.

 

The world with many problems is faced

But to a lot of people this doesn’t seem to matter.

As long as they have all they want and can afford to waste

It’s not their problem if the rivers are running out of water.

Whatever they need they can get

And whatever will happen hasn’t yet.

Generations to come may struggle to survive

But things won’t get too bad while they’re still alive.

So why should anybody fret?

 

They see no reason to be worried,

They go on saying “it’s all good”.

For their wastefulness they’re not sorry

When they’re not the ones running out of food.

In large comfortable houses they live

Without struggling to make ends meet.

In their flashy cars they drive

Without noticing the homeless on the street.

But they don’t offer the help they could.

 

People will follow where someone leads

For something to do they read the news.

They don’t seem bothered by what they read

And they will not let you challenge their views.

If someone somewhere committed a crime

It was in another place at another time.

“It didn’t happen anywhere we go,”

And “It didn’t happen to anyone we know,”

They are not effected by a stranger’s abuse.

 

People like sheep will flock

To hear religious preaching.

Leaders often use guilt or shock

To add force to their teachings.

Whether or not their words are true

Has little to no relevance.

So many of the world’s big issues

Are results of extremist influence.

Most people will not take a stand; they just sit on the fence.

 

Whether their leaders are the same that caused

So many countries to go to war,

To consider these things they do not pause,

Of the suffering of others they’re hardly aware.

To lend a hand they refuse,

“Some people win and some people lose,”

They proudly insist that they have rights

But for the rights of others they will not fight.

They should try walking in another’s shoes.

 

The world becomes overpopulated

By people so unmotivated,

To make changes they will not try.

Through life with ease in comfort they cruise.

“Into the lives of others we mustn’t pry,”

Really what a pathetic excuse!

Do they have no empathy?

Are they all plagued with such apathy?

When I read the news tears fill my eyes.

 

 

Somewhat Awkward Introduction

Hi there,

 

Grab yourself a coffee, beer, protein shake, or beverage of your choice, and take a seat. Please allow me to introduce myself. I promise I’ll try not to ramble too much.

 

My name is Jasper, and at the time of starting this blog, I’m 28 years old. I was assigned female at birth, but have identified as male for years, and am still going through the process of transition. I’m vision impaired, and have a mildish hearing impairment in one ear. The hearing impairment is a bit of a long story that I’m sure I’ll tell you one day. In fact, I’m sure there will be quite a few long stories to tell. There are so many things I feel need to be said and stories that need to be told, and this seems like the best place for it.

 

I don’t yet have a complete picture of what I want this blog to be. There are things I want to share about being a trans man with a disability. There are plenty of human rights issues that I really care about for myself and others. Plus, I’m a bit of a gym junky, so I’ll probably end up talking about some of that as well.

 

I intend this site to be a safe space for myself and everyone who comes to read my posts and discuss them. Any forms of bigotry will not be tolerated. There will be posts to help people understand how to keep this a safe space. I’m also doing all I can to make sure this site is accessible to everyone. If you are using a screen reader or any other kind of assistive technology and you’re having trouble accessing my blog, please let me know.

 

There’s going to be quite a variety of topics for me to post about. I hope you find some posts that interest you, and that we can have some awesome conversations in the future. See, I did try not to ramble too much.

 

Cheers

Jasper