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!11143487_476575165824448_4252663570901157107_n

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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!

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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.

 

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That September Feeling

So, here we are. On the road back to education after a fun, hot, long summer… Well, at least my summer was!

That fear is starting to wash over me again, the fear I know a lot of others, both students and parents, will feel too. It’s a kind of strange apprehension isn’t it? That feeling of what might be facing you or your child this year, in terms of how their sight will affect their education and socializing this year.

“Have they cut his/her resource hours again?”
“What will the other kids think if I can’t recognize them?”
“I hope someone doesn’t ask me to read something off the board.”

I’ve dealt with That September Feeling every year since I was about 12. And it would be a lie to say you don’t feel it every year, but it does begin to bother you less and less every year. The worst that feeling ever was, was the year I went into Leaving Cert – absolute nightmare! Imagine what it was like to have the “points race” on top of the September Feeling?! It will send you a little crazy, it will send your kids a little crazy – it will drive your parents absolutely up the walls! … But isn’t that a parents job really? To over-think and over-worry about their kids? No matter their ability?

So what’s your story this September? Have you been suffering That September Feeling too?

My story is that I’m starting a masters in a few weeks time. You’d think after spending four years at an undergrad in a college where the Disability Support Service is second to none, I wouldn’t be apprehensive? You’d be so wrong to think that! Going in this September is just like starting again for me. There are new people, new lecturers, a new department and a new building. It’s like information overload for the girl who relies on her memory and not sight to get around.

I’m learning to combat my September Feeling though. For me, it’s all about organization really, organizing yourself and organizing the people around you that you depend on. I’ve planned my year in terms of how to study and when to study so I don’t tire out my eyes – if you suffer from a nystagmus like I do, study and time planning is unbelievably important! I’m also going in to meet with my lady in the DSS tomorrow too – again this comes around to organizing the help you’ll think you’ll need. Planning is such a good help to me when I’m trying to combat That September Feeling.

So, as I’ve asked before. How do you combat your September Feeling? Do you have That September Feeling this year? Let me know – I’d love some feedback on it!

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Let’s Do the Time Warp Again

So, its been an unbelievably busy few months and I’m really annoyed with myself that I haven’t been able to update this blog as much as I’d like. Seriously, if my blog was a friend, it would have stopped speaking to me by now! And what have I been busy with? Well, a lot of different things really. The first draft of my final year research project is almost complete, I’ve been churning out essay after essay for college, I’m chair of a society, and I also ran for and was elected to a national position within the youth wing of the political party I’m involved in (I’ve purposely omitted the party name as this blog isn’t the place for party politics). Busy time eh??

When I left off, it was around October time. Halloween passed off without incident – I think that night was spent watching scary movies and eating popcorn! November ended up being mad busy though, Final Year is really starting to gain traction now. I touched on how my education has been impacted by my albinism in the last blog but one thing I’d left out was the massive issue that is time management. It has always been, and probably will always be one of the biggest challenges I face. It would be a lie to say my disability doesn’t slow me down because in all honesty, it does, massively. Some of the issues people with albinism face are problems with fine motor skills, reaction time and reading time, especially if you have a nystagmus like I do. (I can hear people already wondering what that is – I’ll add a graphic to explain at the end). Of course this affects my life, inside and outside of academic life.

Think about it, how long does it take you to read a book? You can pretty much double or treble that time for me. How long does it take you to write a note or short letter? Again, double or treble that. That isn’t me complaining, its simple fact. I’m quite used to it and I know my limitations. But I almost always take on more than I can handle, its just how I am. I think the reasoning for that might be a subconscious thing though. I constantly strive to be as “normal” as everyone else, and I think by keeping myself as busy as my friends I feel like I’m achieving “normality”. Its obvious to me that part of me is clearly still slightly uncomfortable with my disability. But I’m 22, surely that’s still to be expected? I’m not outwardly uncomfortable; it’s a purely subconscious thing. The biggest issue with me taking on more than I can handle is an obvious one though; something along the way is going to suffer. Until just after Christmas, I was up to my neck in assignment extensions. These are given by lecturers on the basis of my disability slowing me down workwise, which it does. And it is a great option when you are under pressure, but I would urge others like me to try and hit the assignments running. That’s one thing I’ve failed to do almost every year and it is by far my biggest downfall. I always overestimate myself: “That essay won’t take me too long to research, I’ll do it tomorrow because this *insert another assignment name* is due sooner”. Again, I think the reason behind my overestimation of myself comes from that discomfort with my albinism.

Its not all doom and gloom though because I’ve got something really exciting going on at the moment – masters applications! (Below is a link to the recent coverage UCC’s postgrad open day got on the Examiner which i also featured in!) I’m going to apply for two at the end of this week and I’ll hopefully have some offers by the middle of March. Not to sound like a total nerd but its unbelievably exciting! I’m applying for two so it’ll be a wait and see game to see which offer I get. My parents are fairly excited too – I think deep down they’d always wondered how life through my “special” eyes would treat me. I’m sure it’s a feeling every parent has for their kid regardless of disability but its even more poignant for parents of a child with a severe disability be it hearing, sight or physical… “Where will my child go in life?”, “How will my child succeed?”, “How is this disorder/disease going to affect my little girl?”.

So again, I want to ask you all for feedback. How does your disability affect you or your childs’ time management? It’s an important thing to think about. Do any of you have experience of education at a masters level? Its slightly daunting to not know what I might be facing! I’d love to hear from someone with similar needs as mine.

http://www.irishexaminer.com/ireland/graduates-vie-to-stay-at-the-top-of-their-game-258172.html

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Well That’s School Covered

For me, there was always a massive difference between education and school.  I’ve always loved being educated and learning new things, but I never, ever liked school.  I think it was mix of things; part of it was the simple fact that school for a child like me wasn’t school for a typical 4 or 5 year old.  And another side of it was that I was probably one of those kids who just didn’t enjoy school anyway, regardless of my needs.

 

School for a kid like me was awkward and full of questions related to that awkward ness.

“Mammy, why can’t I write things down from the blackboard? Everyone else can”

“Mammy, why do I always have to sit at the front all the time?”

“How come no one will pick me for their team in PE? Why am I always left until last?”

 

I started school in the mid-nineties, and I pull no punches when I say that there was next to no supports for a child with special needs.  There was nothing.  Most of what I remember in the way of supports was a few hours of resource a week and having to use vision aides during class time.   And they were really awful aides to use! One was a hand held magnifier that was quite thick and round, really it would’ve been better used as a paperweight!  Another was a handheld telescope type thing for seeing the blackboard or whiteboard.  I mean, imagine being 5, 6, 7 years of age and having to use stuff that makes you stick out so obviously?!  Because kids can be harsh, it’s just their nature to say what they think.  So a lot of the time I’d do my best to avoid using them, I wanted to be just like my friends and my way of doing that as a child was to pretend nothing was wrong and that I didn’t need these things.  That culminated in me falling behind, in terms of spelling and maths – things that are primarily done on a blackboard.

 

That being said, things definitely improved towards the end of primary school, when Special Needs Assistants (SNA’s) were introduced to primary and second level.  The help that comes from someone sitting down and taking notes for you when you’re dealing with a severe vision problem can make a huge difference to learning.  And I can say without doubt that if it wasn’t for the help of my SNA’s (most of which I’m still in contact with because you do become that friendly), I probably still would be that little girl who struggled to spell properly and couldn’t do maths very well.

 

College.  Well now, that’s a whole different ballgame altogether.  I can truly say that it was in college that I really came out of my shell.  It’s a total cliché but entirely true!  It’s where I really began to enjoy being “in school” as opposed to being educated, I can now enjoy the two hand in hand – and that’s how it should be!  Now, I’d be lying if I said it was a breeze, it’s not.  The nature of my vision problem dictates that my eyes “get tired” as the day goes on and that’s an obvious problem when you have days in the week where its 9-5 lectures.  The college system of applying for help is different and I think that has a big impact.  If you enter as a DARE (Disability Access Route to Education) student, or when you enter normally you can register with your colleges’ disability support service.  They’re the ones responsible for ensuring your needs are assessed and catered for.  In my case, most supports I’ve needed or asked for I’ve been granted, which is mostly a note taker, exam supports and sometimes learning supports.  Learning supports might seem like an odd one because I have a note taker but it’s not always easy to gel together what’s on lecture slides to the notes, especially when you’re mostly relying on sound and speech to learn like I do.  I found the social side of college much easier than the clique type thing that goes on in secondary school.  In secondary school, everyone’s fighting to become top dog and cliques form according to music taste, fashion sense etc.  Whereas in college, you have your class, societies and clubs to get involved in, and it’s much easier to integrate that way.  You (generally) lose that self-consciousness you had as a teenager and become more comfortable in your own skin, disability or no disability.

 

To be honest, I do think some of my dislike to school could have been avoided had my parents known what supports I’d need.  Special needs education was only really in its infancy (pardon the pun!) when I started school, and there was a definite “them and us” mentality when it came to approaching the Department of Education for supports.  Because most parents with their first child in school with special needs won’t know what supports their child needs.  Of course they don’t, they’ve never dealt with this before!  The parents are trying to navigate what supports their child needs and how to get them, and they generally did that with the help of a department official who was constantly worried about their bottom line.  Simply put, when I was in school, the parents and kids never had an advocate, there was no third party there to say “I think this would help your child – let’s apply for it”.

 

When I saw the NCSE (National Council for Special Education) had printed a booklet to help parents out with this in recent weeks, I was delighted.  I really was!  It’s great that parents will finally have impartial information from the body that is there to support them and their children during their school years.  Having read the booklet myself, which is available here, it’s extremely comprehensive.   The moderators have fully explained exactly what services children can avail of, and what they may need to do to get these, in terms of evidence.  They are very honest about what services a child should or should not get, and they deal with real practicalities for children starting school with any kind of special need.  I think this type of publication will go a really long way to helping give parents a direction when their kids are starting school, which is a massive help to the child.  However, one thing that the NCSE has failed to address within this publication is the vast amount of cuts across the board to children with all manner of special needs.  With the number of cuts to special needs children’s’ supports in recent education budgets, its vital parents begin now to acquaint themselves with the supports their children will need along the way.  Above all, parents are the ones who will do the most amount of fighting for their children (whether the kids ever realise this or not!), and they have a better chances of winning battles with the Department of Education when they’ve fully equipped themselves with the information.

 

I’d like to finish this blog post by asking for some feedback.  What are your experiences of dealing with the support networks for your child, or perhaps for yourself?  Were there some major roadblocks you came up against when fighting for your right to education?  I’m really interested to hear the stories of some others and I’d love to get a bit of conversation going, especially for something as vital as this topic.

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Symbols Aren’t Always Symbolic

So, there was this really interesting article recently on the BBC News website, and it pretty much sums up the past two weeks of my life quite nicely. 

The article I’m talking about is available here: http://www.bbc.co.uk/news/blogs-ouch-24149316

It details the movement currently under-way to have the famous disability icon changed from something more static to a symbol that would be representative of every kind of disability.  I found that really interesting.  Think about it; its pretty hard to find one symbol to encompass a whole wide range of impairments, from physical to sensory, the visible and the invisible.  The symbol we all know now is one of a stationary person, with a scarily straight posture who looks as if they are fused with a wheelchair.  This is the symbol associated with disability since the late 1960’s.  And it has now become what most people will expect to see when they hear of someone with a disability.  They don’t expect a person who is able bodied but deaf or partially sighted. 

Sometimes, I think that because people have preconceptions about what a person with a disability should look or act like, they’re not aware that this person could be in their midst.  And unfortunately I’ve suffered because of that in the last two weeks.  One such incident was when I got out of a car that was (rightfully and lawfully) parked in a disabled bay, and a member of the public decided it was ok to verbally abuse me “because that space is for a lad in a wheelchair – there’s nothing wrong with you”.  Just because you can’t see my problems obviously doesn’t mean I don’t have them.  And its so hurtful when someone does treat you that way, in broad daylight and in full view of others, and you feel like you can’t defend yourself.  Another such incident was when someone gave me a telling off for my “outright rudeness” because I’d walked passed them without waving or smiling.  That person didn’t realise that, you know, I’d have smiled had I seen you!  But I didn’t, because my eyes don’t work the same as yours unfortunately. 

I’m not writing about either of those incidents to score points or to make it sound like my life is hard or anything – I just think it’s important people realise that these things do happen when you’ve got a “hidden” disability.  And there are so many ways to combat it too.  First off, don’t ever dwell on it.  We’re all guilty of making snap decisions about someone based on what we see.  Everyone does it, even I do it – it’s human nature!  What I’ve found works for me is to just try and calmly explain to someone why I have a parking permit or why I sometimes look at them and don’t respond.  It’s the best way to deal with it because 9 times out of 10 that person is so happy to know that you’re not being rude or obnoxious – you just have extra needs that they mightn’t realise.

It’ll be interesting in the coming months to see what kind of symbol is created to symbolise disability worldwide.  What are your thoughts? Do you like the symbol already in circulation?  I think the one that is being thought of would be great – a less stationary figure who is in motion and trying to move. 

Because let’s face it – no matter what your impairment, how many of us are ever that motionless in everyday life?