Hello and welcome back to the newest instalment of my disability Q&A 🙂
Today’s interview is brought to you by a wonderful lady named Kate! We met on the Internet: she is so kind, caring and fascinating! I hope you learn something new 🙂
Tell me about yourself:
My name is Kate, I am, ahem, forty-four, a married mother of two, living in Australia. Once upon a time, before my nine and six year old came into the world, I was a graphic designer but now I like to call myself a writer. I dream of becoming a published memoirist as I currently write two memoirs, and have an idea or two for works of fiction and children’s books. I also write for blogs.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I have Usher syndrome, the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this disorder worldwide. (Don’t quote me on this information. I totally did a cut and paste.)
Have you had your disability from birth?
I am adopted, so have no family medical history at all. When I was two, I was diagnosed with severe hearing loss. My mother hadn’t been concerned that I was not yet speaking because my older brother was slow to become a talker. (And then became an annoyingly slow talker.) It was only when a family friend who had experience with deaf children voiced his suspicion that I was finally taken to a specialist and diagnosed.
I was sixteen whenI was diagnosed with Retinitis Pigmentosa, a progressive vision disorder which causes the light-sensing cells in the retina to gradually deteriorate. That diagnosis was a shock. I was aware that, for as long as I could remember, I had trouble seeing in the dark. I never told anyone, as I thought it was just something I couldn’t do, just as some kids couldn’t run fast, or weren’t good at art. I just couldn’t see well in the dark. And sometimes, I would bump into things. But I never thought it would be something as serious as RP.
I have not received genetic testing for confirmation, but the two conditions together strongly suggest I have Usher syndrome Type 2. My diagnosis was that I would be totally blind by forty, which has not been the case. Winning!
Do you refer to yourself as a person with a disability? If not, why not?
I do refer to myself as a person with a disability or two, though rarely do I even consider the disability. I am not aware of what I cannot hear, I am not aware of what I cannot see. For me, the way I am is my normal. Yes. I have two disabilities but they are as much a part of who I am as my hair or eye colour. They are two of the many things that make me, well, me. I don’t wake up and feel like some of my hearing is missing. I don’t wake up and go, hang on, where did my eyesight go?!
Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
This has been a lifelong dilemma. Shall we start at the beginning? With my hearing impairment, I always kept it hidden. At school I never wore my hair back. I thought I could fool people. And it turned out I did. My art teacher, who I had worked closely with for two years, had no idea I was hearing impaired and wore hearing aides. With my vision impairment, I would never tell anyone until I was comfortable with the person knowing, and that was quite often when it was becoming uncomfortable with them not knowing. I remember one friend thought I was just hilariously drunk when I stumbled around in the dark.
With employment, I secured my first job through a disability employment scheme. No hiding then. But after that first job, I never told anyone before I had secured the job, and worked long enough to prove myself. Then, ever so nervously, I would wear my hair back and just let them figure it out for themselves. It was never a real issue, except once when it was extremely awkward as my idiot boss said to me, ‘I thought you sounded like a deaf person.’ Like I said. Idiot.
With my sight, I was forced to disclose my condition when I had to ask for time off to have cataract surgery. Cataract surgery at 29? I had some explaining to do, and that boss couldn’t have been nicer.
Since having children, and being in the school community, I have had to be open with the teachers. To save me from awkward situations and also to let them know my children are pretty damn special, well, they are, I let them know so they understand why my two are sensitive and empathic. But also, why they are mature beyond their years and need looking out for so they don’t get depressed too. It is a big deal to know your mother is going blind.
At the beginning of this recent school year, I dreaded going through the motions of telling each and every teacher I, or my children, would have contact with. One part of me hated the other part of me for it, but the sensible me decided to get the principal to just tell the whole school teaching community in one hit. Bam. My story was out. The silly me still hasn’t quite forgiven the sensible me. Especially when, the very next day, one teacher jokingly said to me, over the loud home-time music, ‘you don’t need to wear hearing aides to hear that!’
There is always one, isn’t there.
Do you use any mobility aids such as a wheelchair or walking stick?
Just prior to turning forty, the age I was told twenty five years earlier that I would be totally blind, I had a little bit of a breakdown and panic attack. Like, oh my goodness, I am turning forty this year and I am not even ready to be blind! I became depressed, even suicidal for a brief moment. Even though I didn’t yet need it, I undertook white cane training, just because. Just to be ready. With that, I had to overcome the psychological hurdle of openly being seen as someone with a visual impairment when up until then, no one knew.
I then did turn forty, I had my cane technique perfected. And in my bag the cane stayed. My remaining sight didn’t suddenly disappear on the eve of my fortieth birthday, and I woke on my birthday relieved that I had not spent the last twenty five years dreading that day, but had done the right thing just by getting on with life. I didn’t take life for granted, and I went off to see the world while I could, but getting on with life meant I didn’t wallow in sadness. The cane training was not a complete waste of time. I know I can use it if desperately needed. But four years on, I still don’t use it at all. Soon. One day soon, it will be desperately needed. But until then, I will hang onto my last sense of independence (and my sense of invisibility) for as long as possible.
If you could extinguish your disability, would you? – If not, please explain why.
It may sound crazy to someone who is not hearing impaired, or not vision impaired, or not, like unlucky me, both, but I would not. This is all I know. I don’t know what it is like to not be hearing impaired, to not be vision impaired. This comes to me often in my writing. I cannot imagine how to write a character who is without these disabilities, because I have no knowledge or experience, of what it is like, to refer to.
Simply put. Without my disabilities, I would not be me. And to be honest, without my disabilities, I don’t know that I would like me. I would not have my empathy, I would not have my compassion. I would not have my determination and perseverance. Without my struggles, I don’t think I would truly appreciate what I do have.
No. I am just fine the way I am, thank you.
Oh, hang on, I just noted that the question was ‘extinguish’.
Yes! Yes! Yes! A miracle cure, now, would be wonderful. I could be just the way I am, just newly improved! Yes. A miracle cure that could extinguish the disabilities. For me, and for all the others like me.
For those who do not know much about your disability how does it affect your mobility?
With my night blindness, in the dark, I am totally blind. That said, I am so good at moving around familiar spaces in the dark. Better than those with good night vision, sometimes. I know how to guide myself with touch. As long as nothing is moved without my knowledge. Or that the bathroom door is not left shut when it is normally left open. BANG! Sorry family! Sorry for waking you with that loud bang. Just my whole body walking into a door. Go back to sleep now.
With my tunnel-like vision, I think I can see just fine, if it is just me. Throw me in the middle of a crowd, it is like constantly getting a fright. When I do notice those around me, it is when they are right in close. It’s like, where the hell did you come from, over and over. Sometimes, I think I am walking along alone, and I catch a scent in the air, and turn to see I had just walked pass someone I had not even noticed.
Do you think your disability has made you who you are today?
It certainly has. Although I do not think it myself, remember, this is my normal, I don’t feel special, I am aware that I do seem special to others. I know I inspire, I know I amaze. I know I achieve far more than was expected of me. My mother was told not to expect me to finish school. Not to expect me to amount to anything much at all. Well, I finished school. I finished university. I have had a successful graphic design career, working both in Australia and in the United Kingdom. I have travel extensively. I have a beautiful family. If that is not amounting to anything at all, what is?
Along the way, I have had many, many battles. Battles against perceptions. Battles against expectations. Battles against mentality. And I know I will have many battles ahead.
But my disability has made me incredibly strong. And resilient. And I know I will get through those battles ahead. But that doesn’t mean I don’t dread them.
Meanwhile, I am very aware that so many like me are also facing battles. Battles against perceptions. Battles against expectations. Battles against mentality. And they may not be quite as strong. Or they may not be heard. So for them, I write. I write my thoughts, I write my experiences, I write my frustrations. And hopefully, my words can help them through too.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
I am at a stage of acceptance where I just think, it’s no big deal, that’s life. Shit happens. You win some, you lose some. Get over it. I am very aware that the newly diagnosed would absolutely not share these views so I know I have to be careful what I say.
But I have not always been in this place of acceptance. I have spent many years grieving. And for me, grieving meant avoiding. Once upon a time, my coping strategy was to work really hard, save, then quit my job (something I was able to do as a successful freelance graphic designer as I kept being rehired by the same firms) and I would pack my back pack, a tent and guidebook, and fly far, far away from anyone who knew me. I would then travel alone for months, loving that everyone I met didn’t know anything about me.
My advice would be, don’t do what I did. You can run … and, well, you know the rest. It caught up with me, in a dangerous way, just before I turned forty.
Talk, talk, talk. Whinge and cry. Be angry. Be honest. Then let go.
Truly. Having Usher syndrome seems like the end. But I am going to shatter that perception. It’s no big deal, that’s life. Shit happens. You win some, you lose some.
Talk, talk, talk. Whinge and cry. Be angry. Be honest. Get over it. Then let go.
Oh, hang on. I wasn’t going to say that, was I.
Any advice you’d like to give to a person with sight / no disabilities?
Simply, see me as me. See through the disability. In fact, I would send you straight over to my blog to read a little something I wrote. Go on.
Did you read it? You didn’t read it, did you? Well, it goes something like this.
Something doesn’t work properly in my ears.
Something doesn’t work properly in my eyes.
Usher syndrome is such a minor part of who I am.
But Usher syndrome is not who I am.
I am ‘me’.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
When I was diagnosed, honestly, I was told, ‘you are going blind, you will be blind by the time you are forty, come back in ten years, and we will see how that is going.’ Honestly? Yeah. Let’s get together and have a chat. In ten years! No wonder I was an emotional mess.
Fortunately these days, there is so much more support around.
Where can people find you out in the world?
You can find my words on my personal blog, From Katie to Kate (http://www.fromkatietokate.com) or on the Usher Coalition blog (http://www.usher-syndrome.org).
I am Kate Elizabeth on Twitter (@_kateeliz) so please come and say hello.
Anything you’d like to add my lovely?
Oh, enough about me! Thank you for having me, Sassy!
Wow Kate, thank you so much for sharing your story! You are truly fascinating and I love that embrace life with humour and honesty! I am so grateful you shared your story with us, not only have I learned something new, but I hope that your strength and charisma proves that life really is what you make it! 🙂
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If you enjoyed this interview why not check out the others in the series so far?