Today is International Women’s Day. First and foremost, I’m a woman. I have the basic rights to aspire to be the best I can be, maximizing on all opportunities to reach my full career potential. The fact I have Usher Syndrome is irrelevant.
Yes, like others, I face many challenges, but on the whole, I’m a woman with career aspirations. I seek to achieve my hopes and dreams just the same as that of a non-disabled person in an equitable fashion, regardless of my gender identity or my disabilities.
What are my hopes and dreams? Very simple, I long for an inclusive world where we’re accepted for who we are, and encouraged to be the best we can be. Whether that is being a woman, or simply a person who just happens to have different abilities. Is my dream really that difficult?
Being diagnosed with Usher syndrome
I remember the day I was diagnosed as having Usher Syndrome. I remember curling up on the sofa drinking a very large glass of wine with one solitary tear falling down my right cheek. No matter how many times I wiped away this damned tear, it continued to come back with a vengeance. My mind was working overtime. I had so many questions, but no answers, How can I hear if I can’t see? How can I see if I can’t hear? Does this mean I am no longer employable? Will my employer take the decision to medically retire me? But I was too young to retire – I was genuinely frightened.
The next day, I sourced a book to help me understand my condition through the words of another Usher Syndrome sufferer. The author shared a story about going to a barbecue, explaining to friends that she would need to leave early because she wouldn’t be able to see once it became dark. She described this as Cinderella Syndrome.
I am not shy or ashamed to admit, I am a girly girl, so I really latched onto the Cinderella theme. So, now, everyday I rewrite the script for my life story; “Living with my two ugly sisters” – Iris (eyes) and Aural (ears). The ending to my story? To live a fun, fulfilling and independent life by not allowing my two ugly sisters to take control of my destiny.
I hate the word ‘inspirational’. I don’t want your sympathy or pity
I want to live in a world where disabled people are not deemed ‘heroic’ or ‘inspirational’ because they undertake ‘normal’ day to day tasks, thus creating a world that is ‘inclusive for all’.
There continues to be a general perception in society that issues relating to disability can only be addressed with pity and sympathy. In some cases fear, because people don’t know how to react. We can often be seen as an object to be pitied, or we are placed on a plinth and deemed ‘inspirational’. I have to admit, I have a strong personal aversion to this word.
Let’s be honest, is it right that I am deemed ‘inspirational’ because I fight to sustain employment, a basic right that everyone should have? I will leave it for you to decide, but this is my personal view.
Some people are also of the belief that the contributions made by disabled people cannot actually make a difference to productivity in the workplace. However, thanks to the rapid evolvement with technology, we are in the middle of what I describe as a modern day industrial revolution – creating an enabling society – a society that has real potential to embrace empowerment for all – regardless of your gender identity, regardless of your ethnicity, regardless of whether you are a person with disabilities, we are in the midst of creating a world where we can truly aspire to be the best we can be.
I continue to be the best I can be
I continue to work hard and be the best I can be. I fight hard to be someone that my employer is proud to have on their books. Not because I am disabled, but because I can make a valuable contribution in the workplace, helping them achieve their business objectives. If you are struggling and want to influence change but don’t know where to start, look in a mirror, what you do see? You see the person that can start the journey to influence change. One piece of advice I offer, if you are seeking to make change, don’t simply tell someone that they are doing it wrong. Instead, explain why it doesn’t work effectively for you and offer a solution that could work better for both you and your organisation. I find by taking this approach, your leaders are more willing to listen. They might not always accept your recommendation but there will be times they will. I can speak from experience.
So on International Women’s Day, I am not only proud to be a woman; I am not only proud to be a woman who just happens to have disabilities. I am proud to be a woman with disabilities who has been in full time employment since the age of 16, working my way through the ranks. Have I achieved my end goal? Not yet, but I will get there. However, it is important that I have a sustainable career where I can get up each morning with a sense of pride. That is my interpretation for success and one I will never give up the fight for.