independence – Beyond The Blonde

Finding A Rebel Rose

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Some of you may remember reading about my experience of entering the Cork Rose Selection in a blog post a few weeks ago, how I was nervous but excited, and very busy! Just this weekend passed, Cork found their Rose in Aoife Murphy, and the Rose Class of 2015 have been clamouring to book tickets to the dome since! Aoife is such a fantastic representative for the Rebel County and we are so lucky to have her.

The experience itself was a world wind tour of Cork such as I’ve never seen before, and I’m writing about it for two reasons – to create a record of the fantastic time I had, and also to tell people a little about it too. I want to let people know what a confidence building experience it is, and encourage other girls to take part in future. In The Rose Tour and The 5.30 News, I told you about my links with the mental health charity Suicide Aware. I have become somewhat of an ambassador with this charity, and represented them throughout the Rose selection process.

So lets have a look at our last weekend before the selection nights. It started out in Curraheen Greyhound Stadium on Friday June 6th. We gathered there for the evening to mingle, chat, and maybe put a few Euro on a dog or two! At every Rose event, we had the chance to chat with each other, which can be really nerve wracking – especially for me as I won’t always recognise faces. Once I get chatting to new people and get to know them, I’m instantly comfortable and can carry a conversation myself, but my lack of sight does make me inherently uncomfortable with starting conversations with new people. But, as with every group, there are always girls who are chatty and able to guide you into a conversation, and I was lucky that these girls surrounded me! I feel that confidence can be a learned behaviour and can definitely be picked up from others, and often in these new situations I do find myself drawn to chattier people.

Dress ~ Verso Hair ~ Aisling Kelleher Makeup ~ Claudia @ Seasons Beauty — Dress ~ Verso
Hair ~ Aisling Kelleher
Makeup ~ Claudia @ Seasons Beauty

It was an early start the following morning, as Saturday was our day out on a non-stop Cork Rose Tour. We started with photos in the Clayton Silversprings Hotel, and traveled to the Jameson Distillery in Middleton first. As my null point is on my left, I did my best to stick to the left of photos so I would not have dancing eyes in every photo taken that day – though I wasn’t always successful in that! We had a tour of the old distillery, whiskey tasting, and finally a complementary cocktail at the end of our tour. I’d never been there before so it was really enjoyable – and the whiskey tasting wasn’t half bad either!

Next on our tour was the Titanic Experience in Cobh. I confess I’m a massive Titanic fan and I’ll take any chance I can to learn more about it, and this visit lived up to every expectation I had – I’m going to go back over the summer. While it is a very visual tour, my Rose girls couldn’t have been more helpful in describing different things they thought I might miss – like reading out the information on my ticket so I could figure out if my passenger lived or died in the tragedy.

After a yummy lunch in the Commodore, we traveled to Fota Wildlife Park – and the child in me got really excited when I saw the meerkats!! Again, this was a really visual tour but my Rose girls were my eyes and described some of the funny things different animals did as we stared at them. One thing I was happy I couldn’t see was the boa constrictor they had in the reptile house – I’ll avoid that part of Fota next time! We finished our tour in Reardens Bar, but I admit I threw in the towel a little while after this – the tiredness was getting the better of my nystagmus so I knew it was best to head home and rest up the little dancing eyes. Probably a good idea since our individual interviews were the following morning, and no way did I want to have shakey eyes for that!

Both selection nights have been well documented on social media, including on my page and the Cork Rose Selection page itself. Again, late nights having fun with my Rose girls was a killer with the nystagmus, but I was having so much fun I didn’t let it bother me too much! And it gave me my confidence back, it really did. I had the confidence to walk out on a trip to somewhere I’d never been before without the backup of my friends that would be “used to me” as i say. It gave me the confidence and helped me realise that when others see me, its just me; they don’t see my cane, they don’t see the things I can’t do, and they don’t just see me as “that vision impaired girl who needs lots of help”. Finding that kind of confidence is invaluable, and I can’t thank the Cork Rose Centre enough for giving that to me.

Holly Barry & I having a little down time and some tasty fudge during Selection night rehearsals — Holly Barry & I enjoying a little down time and some tasty fudge during Selection night rehearsals

The Rose Tour and The 5.30 News

That title is a little intriguing isn’t it? Its been a busy few weeks to say the least. But often, when I put my mind to something, I’ll end up doing it alongside another project too, another project that is a world away from the one I just started. So here’s the lowdown. Some of you may know that I’m heavily involved with an Irish mental health charity, Suicide Aware. They work to promote positive mental health in communities and organisations around the country, and they also offer counselling for those suffering from mental health difficulties. I really believe in the work this charity does, and I’m a public advocate of mental health services and service users. Which is why I was honoured when they asked if I would speak about my mental health story at a national level recently. And instead of me waffling about it, watch it here instead.

Only two days after this broadcast, I found myself getting ready for a meeting of a different kind. An information evening about the Cork Rose selection. A few months ago, this same fantastic charity had asked me to represent them in the Cork Rose Selection process which is taking place over the next few weeks. It is an amazing opportunity for girls from all walks of life to come together for a meeting of minds, dresses, shoes and other things. Whoever is selected to represent Cork as a Rose will also have the chance to represent this fine county in the Rose of Tralee Festival in August too. So fingers crossed! I have been to two Rose Centre events already, and I can honestly say I feel my confidence growing with the passing of each event. There is such a welcoming atmosphere in the air. And the thing I am most of afraid of – being the different one – doesn’t cost anyone else a thought! What better confidence booster than that? That ‘feeling different doubt’, as I call it, follows me around everywhere I go, and has done since I was a teenager. If I didn’t know any better, I’d nearly say that it’s a symptom of the albinism! But I can truly say I’m feeling myself shake off that doubt every time I walk in to a room with these girls. And long may it continue – well for the next few weeks it will anyway!

The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here. We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his. While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from. During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”. And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to. So here goes…

The Do’s:

Ask me about albinism, and my sight. Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is. And I’m happy to share this information with people any time they ask. I’ll always be happy to do that. The only way to raise awareness of any impairments and conditions are to be open and talk about them. And in my experience, people always love to learn.

“Who does your hair? I want to go that colour”. I absolutely love this question, and the follow-up of “how do you mean its your natural colour”? I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots. You have to take the good with the bad, right?

Offer some help. This isn’t a patronising thing to do, from my point of view anyway. If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help. It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand. Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost. If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

Stare. How many times do I have to say this? I feel like a broken record. I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare. Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day. It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now. Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand! But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point. Like the guy who is staring at me in the library right now as I write this blog post. Irony eh?

“How many fingers am I holding up?” Irritation level 100. In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me. I’m open about my condition, as I’ve said above. But this is a line I feel people shouldn’t cross. And I’ll normally respond in a way befitting that.

Patronise. This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious. And it isn’t something that annoys me as much as the previous two points. What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”. People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train. These are the people who mean well by expressing their happiness that “someone like you” can be independent. As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences? What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues? I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different. Looking forward to some replies!

Don’t Let Pride Get in Your Way

Flash back to the end of August. I’d had a pretty jam-packed summer; trips to Dunmore East, Liverpool and Inis Mór. And now I was settling down to start my masters in Government, back in UCC. So I’m out shopping for the typical college stuff (pens, papers, highlighters) when I get a phone call. Its from the Irish Guide Dogs Centre and they’ve found a place for me on one of their Independent Living Courses. The course is taking place for the entire following week so I accept my place, pack a bag, and take all kinds of gear with me as its a residential course. Sounds like I did it without even a second thought, doesn’t it? Except there was a second thought, plenty of second thoughts.

Sometimes, I find it really intimidating to partake in some of the workshops/sessions/fun-days that are run for people like me with vision loss or blindness. I find some courses to be a total box ticking exercise – its a case of “ah sure we’ll run that course now and we’ll be done then for the year”. Depending on the organisation of some courses, you can go in waiting to feel empowered and then come out totally deflated. This was definitely a fear I had and kept thinking about all the way out to the Guide Dogs Centre in Ballincollig. I had all these reasons in my head why I didn’t need to go/why I shouldn’t go:

– I manage grand at home, I can do some things

– I don’t really need help from anyone else, I can sort it myself, why does everyone think I need heaps of help?

– If this is a box ticker in any way, I’m high tailing it out the door.

Well, what a surprise I got!

Arriving on a Monday, I was given most of the day to settle in and meet the others in the group, as well as the course instructors and the other staff. Together, we all got a tour of the building, and got to grips with the facilities that were there for us to use during our stay. Then one of our instructors explained the structure of the week to us, which basically consisted of us learning during the day, and making our own fun at night. The course was open for us to do what we wanted with it. So as a group, we all came to a consensus about what we wanted to cook for lunch and dinner that week, made a list of what ingredients we needed, and decided on some extra household related things we wanted to learn too. So we decided on smoothies, lasagne, casserole, curry, wraps, pittas, banoffee pie, and brownies.

Now, the whole point isn’t to learn how to make these specific foods, its really to equip us with skills we can use to make all kinds of meals for ourselves, and by extension of that, to make ourselves more independent in a safe way. We learned how to use our other senses to tell how well our food was cooked (sound, smell, touch), what foods or sauces we were using (smell, touch), how to layer foods (touch, sound), how to use particular appliances safely (touch, sound), and how to make sure our area was clean after we’d cooked without necessarily using sight.

While we did have our instructors with us the whole time we were in the kitchen, it was still a case of “you must cook this – no one else will cook it for you”. And that is exactly the kind of Independent Living Course someone like me needs. Its about empowering ME to do something and finish a job MY WAY, no matter how different it is as long as its safe. It is so daunting at my age to realise that in the next year to three years, I’ll be living on my own, cooking on my own, cleaning on my own. And its daunting because I’ll be the one in charge of me, I won’t always have my parents or my brother to fall back on. And I know they must wonder about it, as do I, thinking “Will she manage? Will she cope?”. So for me. getting these kind of skills was massively important. It doesn’t just benefit me, it benefits those around me too.

Pride is a good thing. But pride could have put a stop to me going out to the centre and learning all these fantastic, new, and badly needed skills. Pride could have stopped me meeting new friends and us all sharing our experiences with one another. I’m so glad I took that particular leap of faith and didn’t let my hesitation or previous experiences stop me – I would have lost out on so much. I can’t speak highly enough of the training and empowerment I got from this course, words could never describe it well enough It taught me a lot about not letting pride stand in my way too.

If you would like to support the work of the Irish Guide Dogs For The Blind, or want to find out more about their services, please click here where you can donate through their webpage or search through the different types of courses run.