Beyond The Blonde

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!

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

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.

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?

Me & My Albinism

If you took a look at me here’s what you’d see; an average looking 21 year old student who looks a bit younger than what she is, and is a little too short for her age, who sometimes looks grumpy but has an infectious smile and laugh when you bring it out in her. You’d see a girl with golden blonde hair, blue eyes and pale skin that is, more often than not, covered up by makeup that’s a few shades darker. One thing that would not be obvious at a glance is my hidden disability.

So what is my disability? A mouthful of a thing called “occulocutanious albinism”. A condition that primarly affects my sight but also gives me pale skin and stops me from tanning. Its pretty severe; I can only read the top letter of the eye chart in a doctors office – and that’s on a good day! Strong sunlight, my workload and the length of my day all have an affect on how “good or bad” my eyes will be during the day. It sounds pretty awful, and when a doctor or nurse who doesn’t know me reads this on a chart, I get look of pity which is unbelievably uncomfortable! It’s genuinely not that bad though – I absolutely love my life. I love my family, my friends, the course I study in college, the politics I’m involved in and everything in between! Don’t get me wrong – it’s not all sunshine and lollipops because I do have some awful days. But don’t we all?

What I’m trying to achieve by keeping a blog is to reach out to others like me, and others who are just interested. I want to let people know what college and life in general is like for someone looking out at the world with imperfect eyes. Hopefully I’ll achieve this without rambling too much and you’ll all find it interesting too!