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HomemifeatureLiving with Ushers: Personal Persective Part II

Living with Ushers: Personal Persective Part II

In the October issue of mivision we introduced Edan Chapman, “a Deaf and slowly going blind professional photographer”. Edan was born profoundly Deaf as a result of Usher syndrome, with retinitis pigmentosa (RP) stealing his sight from the age of 13. Edan’s story is so powerful it needs to be told in his own words.

While the world has yet to come up with a complete cure, my mother always said that she was glad I was born in this time of technological advances because she always had hope that they would come up with something to help me before I lost all my vision.

I had no one to talk to. No support. I grew up in Lismore and Wellington (Mum lived in Byron and Dad in New Zealand) and I didn’t meet anyone with Ushers until I was in my 20s. By then I had resigned myself, gone completely crazy, pulled myself back together and started trying my best to live for the sake of living.

Edan now has 5 per cent of his peripheral vision left, but retinitis pigmentosa is also interfering with his central vision. It is getting blurry, harder to focus. Glare produced by cloudy days is the most difficult. Eden describes going blind as his “impending doom”.

I just want to make my mental library that much bigger so I can go blind knowing I’ve had an amazing life

My older half-sister (paternal) has Ushers too. When I went to see a specialist in Germany, he was astounded and claimed it was a one in a million meeting of DNA – one man meeting two separate women with the SAME genes and producing two children with exhibiting symptoms of Ushers. Oh, I’m so special!

Over the years though, I realised something important. I can still see. I had wasted over 10 years avoiding art and stuff because I thought it was pointless. But in the end, all I did was rip myself off.

Forced into a Mould

In regards to support, I’ve been trying to get support from Able Australia for five years. And have gotten pretty much nothing. I don’t really blame them but I do find it frustrating because I’m in a kind of grey zone. I’m still ABLE. I’m not dependent (may that day never ever arrive) and I can still get around so they don’t classify me as a high priority but what about preparation? What about my mental health, feeling safe and ready? I’m not getting that.

Thankfully, I got a new case manager recently and, man, she has been a godsend. In only a few months we’ve done more than in five years of asking!

I’ve now applied for housing commission and for the council care package (where they assign someone for a few hours a week to drive you to the shops to do shopping or whatever. Right now, I’m opting for the shopping just so I can see how the whole thing works. (A side note, trying to do shopping with a cane is so frustrating! Have you ever tried to carry heavy bags on ONE arm and use a cane? I always bring a backpack but still, it’s insane!) I’ve got a disability parking permit… I get the blind pension and have a roof and bed and food. It could be way worse.

My biggest beef is now that I use the cane ALL the time I notice people looking at me extremely judgmentally when they see me looking back at them or texting on my phone and sneering at me. I feel like saying ‘Look, I’m sorry I’m not completely blind’.

It does get to me. I can’t help it. I wonder about my validity as a person. I do not consider Deafness a disability. Going blind, to me, is a different story.

The reason for this mentality is simple – it’s about communication. As a Deaf man I am ‘different’, but I can still understand and be understood. No matter how absurd the subject, there are always ways to mime, write, draw and laugh. I have cues. When I think about what life will be like when my vision’s gone, all I can think is, “I’m ****ed.”

Sometimes I find myself actually pretending to be blind and it really does fill me with a sad horror. I’m being FORCED into the cultural mould of what a blind person SHOULD BE. No way! But it’s just easier sometimes. I’ve had people come up and say “Dude, you aren’t blind!” and when I say I’m Deaf, they stop and then I cup my hands around my eyes and say “This is how much I see”. Usually they just back away and walk off real quick.

No one really stops to consider just how much that hurts.

How tiring it is to have to feel I have to be on my guard all the time, to be hyper-aware just in case some moron redneck thinks he’s busted a lying scumbag and wants to bash me up. I’m not kidding. There have been several close calls but because I’m an intelligent person and have a, well, without sounding silly, a kind face and excellent lip-reading skills… I can speak okay, no illusions here, but I CAN make myself understood mostly so that’s saved my bacon more times than I can count.

That’s the worst part of what’s happening for me now. I’m just taking stuff one day at a time.

At the time of writing this article, Edan was heading to Thailand, for a month in Koh Tao, where he was hoping to get what he described as a “zest for life” experience.

I plan on getting my scuba licence there thanks to two friends living there… I’ll be hanging with them and one of them has done the scuba course and is fluent in Auslan so, hey, fun times.

The only part of that course I’m a bit skittish about is the one compulsory night dive but as my friend pointed out, I’ll actually be at the advantage there because everyone else will have tunnel vision too, thanks to the torches. Ha! For once, I’ll be superman and actually flying. Just in the water, that’s all.

I bought waterproof housing for my 5D mark III and lenses so I’m hoping to get some really top notch underwater photos and footage. I want to find a place each day and just sit there and read my Kindle and set up my camera and laptop to time lapse and let it fire away for a few hours and make a series of time-lapse photos in super HD. Plus dive. Swim. I don’t know. I don’t really care what else I do, I just want to make my mental library that much bigger so I can go blind knowing I’ve had an amazing life.

My important point is this:

Life is amazing. Don’t worry. Technology is going crazy at the moment. I can’t promise anything but, hey, hope is good. I really, really hope this helps. I never want anyone to go through what I did – feeling helpless, crushed and worst of all, ALONE. You aren’t. Oh, that reminds me, if you use Facebook, there’s a group called “US Families” (US standing for Usher Syndrome).

www.facebook.com/groups/371009117557/

They are a really lovely bunch and very passionate about this – always lots of great info there. Every now and then there’s a new person who comes into the group begging for help and they are always warmly welcomed and helped.

Next?

Anyway… I refuse to deprive my other senses in my frantic need to enjoy my sight. Cooking, cuddles, conversations, reading (a slight oxymoron that, but remember your brain is a tool and a sense and haven’t you ever been moved bya book? That’s the heart part.)

I’m not quite sure what to do next. I’ve finally finished my “professional” bucket list with my photography and while I do want to continue working as one I do understand that my working lifespan is limited. That doesn’t mean I’ll ever stop shooting photos – you’ll have to pry the Canon 5D Mark XVIII out of my stiff fingers in my coffin to stop me from continuing with that passion but I feel a need to find another creative medium that I can continue to do for the rest of my life.

Edan Chapman Photography

To view more of Edan Chapman’s work, visit his website at: www.edanchapman.com.au

A more recent gallery of work is available on Facebook – search on Edan Chapman Photography. He is also
on Instagram @edanchapman.

I’ve just started a wheel pottery course with my little sister and I’m quickly falling in love with it.

The future is beckoning. I wonder what tomorrow will bring. All I know is that it’s half full and I’m the only one who can make the decision whether it is or not.

“I refuse to deprive my other senses in my frantic need to enjoy my sight”