Albinism in Your Skin

This one is especially for my friends in the Albinism community.  I think we can all agree that – while the blonde hair is a blessing – the translucent skin is a curse!  Especially when you have redness on top of that.

Covering up the redness with tan – do love this gúna though! It’s from Vanilla Boutique in Fermoy 

I’m not sure about the rest of you, but I purposely keep my arms (in particular) covered.  The problem with translucent skin is that redness shows constantly – I know for me, it means my arms end up looking like someone has slapped me, and the rest of my skin is deathly white! I’m so conscious of it, and the only way I’ve covered it before is with a spray tan.  But constant spray tanning isn’t pracitical – or financially healthy!

So a few weeks ago, a friend gave me some bottles of a new skincare range that she’s been using recently – a range called Ocean Bloom.  Usually, I won’t try a new range even when I do get a recommendation – my skin is so sensitive and the smallest thing can set me off with a rash or reaction.  But I must admit, when I checked out the ingredients on their website, I was impressed.  Their moisturiser has an SPF – super important for someone with albinism because of our lack of pigment.  No parabens, no nasty sulphates or silicones – and all organic ingredients.  They don’t test on animals either.

It’s great that the Ocean Bloom range isn’t tested on animals – I also just think this pic is super cute!

So I thought “I’ll give this a go!”.

I started out with the moisturiser and eye serum.  Of course, I patch tested both first, and no reaction so I was ready to go.  Woohoo!

Within a week, there was a clear difference in the redness of my face, something I’ve always had trouble with and something I put down to my albinism.  The red pigment and hue in my face started to fade – not entirely – but noticeably enough.  I’ve been doing a bit of Google’ing, and seaweed (the main ingredient) reduces skin redness, inflammation, and is a natural way to hydrate skin.  So maybe this explains it?  All I know is the redness is going slowly, and I’m super happy about that!

Some pics I took of the moisturiser, just for an idea of the consistency

Similarly with the eye serum, the dark circles around my eyes are gone way down too!  Again, these circles are something I used to put down the strain on my eyes by everyday tasks – I’m sure you all know how difficult it can be to work around nystagmus.  I felt it was my nystagmus made these circles worse – there’s a lot of pressure on my eyes day to day.  So obviously I’m super happy with this too.  It’s nice and soft around my eyes too – again, I’m so careful with what goes near them because it’s important to keep them as healthy as possible.

When these results were so good after just a week, I started using some of their other products – the main ingredient in the range is seaweed from West Cork.  So it MUST be good for the rest of my skin, right?

Remember what I said about the redness in my face being reduced with the moisturiser?  Well, the body butter had the EXACT same effect! I can only presume its because of the way seaweed reduces redness?  Or maybe its because something soothing is on my skin.  Whatever the reason, it basically means I don’t have to keep my arms constantly hidden if I have no tan on!  R-E-S-U-L-T!!

I’m always the first one to share any good products I find – especially when it comes to something that helps with the lesser effects of my albinism.  Trust me when I say this really helped the redness on my face, that I think is mostly down to my albinism.   The same with the redness on my arms and parts of my legs.  It hasn’t disappeared, but there’s a huuuuuge reduction in it.  Hopefully as I keep using it, it’ll continue to reduce it.  I’ve noticed that my skin is a lot healthier in general since I started using the moisturiser and body butter.

My favourite delivery of ALL time!!!! How cute is the packaging?

I’ve included links in this post if any of you want to have a look at Ocean Bloom’s online store, you can.  If you guys end up trying these products too, please message me and let me know!  I think it’ll be really beneficial for people like me with albinism who suffer from the same type of redness.

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Close To Me

This post is about as real as blog posts come, so look away now if you don’t want to be set on a bit of a downer today…


Have you ever sat quietly, almost frozen in a moment, maybe on the side of your bed, or during a trip to a park, and realized you lost something important? Something important enough that you definitely need it, but subtle enough that you didn’t realise it was missing until you got some time to yourself to look for it? I lost something like that. It was me. I lost me. Somewhere along the journey of life that I’m traveling through, I put myself to the side – just for a minute I swear – but I left me behind. I forgot myself somewhere along the way.
I didn’t notice it at first, or maybe I did but I just told myself otherwise. But I’ve now come to realise I lost me a long time ago, and if I want to keep moving forward I need to find myself and my contented mindset again. But what was I like before I lost ‘me’?


How do I know when I’ve found me if I can’t remember what it was like to be me in the first place?


It’s probably a bit like driving to a place you think you’ve been before – but in reality you’ve never been there, and now you’re driving aimlessly wondering where this destination is.
People call this feeling a lot of things: loss, mourning, depression, numbness etc. But does the label really influence what the feeling is? Yes, and no. As my good friend Rob says, “better the devil you know than the devil you don’t”. So in that regard, a label is great. You know what you’re up against and that can help you come up with a game plan. But the label can be a hindrance too. It might make you judge a situation differently and excuse other people’s actions because of their labels, ultimately doing yourself a disservice.


How do you find yourself? Now isn’t that the million dollar question! If anyone had a true and worthwhile answer to this, we probably wouldn’t have a whole market based completely on self-help books and gurus like Dr Phil and Oprah. Don’t I wish I had the answer! I don’t, but I know what can help me at times – taking some time out to reassess. I’m a very social creature and I would spend all my time around other people if I could, but when I start to feel lost I like to take some time out to deal with the feeling. If I don’t do that, anxiety will always get the better of me. And anxiety will always make a situation like this feel 100 times worse.

I’m trying to find me, but I honestly feel like I’m failing miserably at this. For a while, things pick up and I’m busy with some project or other and I honestly feel like I’m getting somewhere; I’m driving the car in the right direction and I’m finding me. But then something in my environment will change and it’ll have an almost crushing affect – the car stops and I’ll fall apart. I’ve lost my way again. It’s tiring and it tries my patience to the very end.
I wanted to write this to let others out there know that you are not alone in this journey. There are a lot of people feeling this lost. It can also make it hard to connect with others, and it sometimes tricks me into being paranoid of what others think of me. So if you’re going through this feeling, watch out for that – you can very easily end up isolating yourself. I’m doing my best to move forward with this journey, and I’ll happily let you guys know how it goes but I know it’s gonna take a lot of time… The plan is to stay busy, I hope that works out for me, and for you too.
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THAT Blog Post….

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Peace and pout on graduation day - I graduated with an MBS in Government
Peace and pout on graduation day – I graduated with an MBS in Government

So last week was an absolute world-wind for me for two reasons; I went viral and I graduated – in that order.  The whole story has two starting points really, one is in my childhood, and the other is in a news story that broke early last week about some SNA’s (special needs assistants) being cut from a school on the northside of Cork.


As a child, growing up in 90’s Ireland, special education supports weren’t as well developed as they are now – any supports available to children and teenagers were provided on an ad-hoc basis by schools, so these supports varied greatly between every school.  It was sheer luck and nothing else that the primary school I went to provided a limited support to kids like me, and provided me with learning supports around english and maths mostly.  Classroom supports like SNA’s came into force after the 1998 Education Act was introduced because the Act gave a legislative right to all children to have their special educational needs met in schools.  But it wasn’t until I was in Fourth Class – I was about 10 years old – before I actually had the help of a needs assistant to do the things that I couldn’t: take notes, describe any demonstrations in class, and generally make sure I’m keeping up visually with what is going on in the classroom.


Speaking to The Opinion Line on 96fm shortly before my conferring ceremony


Up until then, I relied purely on sound because of my vision impairment.  I relied on sound to learn how to spell, form words, write and do maths.  I relied on short, inadvertent, descriptions of diagrams or photos from teachers to understand a flow chart or table.  Until I got an SNA, I spent a lot of my time in classrooms hoping a teacher would just happen to describe what was happening on the blackboard so that I might have some hope of learning at the same speed as other kids in my class.  All I ever wanted to do was learn at the same speed as my friends, but I didn’t have that chance and ultimately ended up falling behind educationally at times.


I was nearly eight years old before I really started to grasp how to write sentences properly and spell words with silent letters in them.  My handwriting structure never improved beyond that of a 10 year-olds because of my finer motor skills not being developed at the same rate as others.   To this day, I still struggle massively with basic maths and arithmetic – and I put that down to the fact that I never learned the basics of dividing and multiplying until I was much older than my friends because someone wasn’t there to help me take notes and learn from the blackboard like other the kids.  There’s a reason we teach children these tools from a very young age – because it’s far easier to pick these tools up as a young child than an older child who learned how to do things ‘the wrong way’ first.  Having said that, I definitely do think that having the support of an SNA to help me ‘keep up’ with my peers did improve my educational situation.  It helped me to learn at the same pace as others, and I needed less and less learning support because I was finally getting the chance to learn at the same pace as everyone else.  It stopped the slippery slope I was heading on – up until the point that I got this support, the frustration of not being able to keep up started to negatively affect my self-confidence and made me almost fearful of going to school.


My masters thesis was based on research into the allocation of Special Education resources in Ireland - please contact me for a copy if you would like one
My masters thesis was based on research into the allocation of Special Education resources in Ireland – please contact me for a copy if you would like one


I hadn’t thought about this much since I had left primary school and completed my second and third level education – I suppose I just ‘got on with it’.  It became second nature for me to have an SNA by my side during my second level education – with the exception of my final year when my SNA hours were dramatically cut.  But on the eve of my graduation last week, I heard a news story about how 3 SNA’s had been cut from a school in Cork.  At a very minimum, three children were on the cusp of losing this invaluable resource that I had.  I say ‘at the very minimum’ because in Ireland, it is a rarity for one SNA to be assigned to one child – often times these assistants are split between at least two children, if not more.


It made me sit back and think for a minute – where would I be now without my SNA?  What would have happened to my education had I missed out on the chance to have a level playing field to others when it came to learning?  I can tell you exactly where I would be without that:

  • I would not have finished my primary school education
  • I would still struggle to read and write
  • I would have been unable to take part in mainstream education in second level
  • I definitely would not have made it to college
  • I most certainly would not have graduated with my masters last week


The piece from The Irish Sun about my Facebook post
The piece from The Irish Sun about my Facebook post


All these feelings are ultimately what lead me to writing the Facebook post below – which subsequently went viral.  I wrote the post because I wanted to stand up for the kids and parents who were in a situation where my parents and I once were.  I wrote the post because I wanted someone with some power over the situation – a legislator, a Dept of Education official, etc. – to think about this huge difference that having an SNA made to my life.  It completely changed my life course and direction.  Unless you have first hand experience of this, it can be terribly hard to grasp just what a difference a resource like this can make to a child.  These department officials, ministers and legislators are literally holding a childs’ education in their hands – I want to make sure that they realise this.



Tomorrow morning at 10am I will be conferred with a Masters in Government in UCC. This is my second conferring in two…

Posted by Jessica Ní Mhaoláin on Tuesday, February 23, 2016

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Tomorrow morning at 10am I will be conferred with a Masters in Government in UCC. This is my second conferring in two…

Posted by Jessica Ní Mhaoláin on Tuesday, February 23, 2016



Instead of rabbiting on any more than I already have, I’ll leave you with the links below to a few different interviews I did on the back of the viral post – just click on them to open.

 The Opinion Line 

Lunchtime on Newstalk

Irish Examiner font page

Nuacht TG4

The Irish Sun


If I can be of any help to anyone on this topic, please get in touch through Facebook or Twitter – I’m more than happy to help!


And yes, I did really enjoy my graduation!

Imagine making the front of the Irish Examiner on your graduation!!
Imagine making the front of the Irish Examiner on your graduation!!



The Rest Is Still Unwritten…

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Yes, I realise I have probably titled this piece with the most over-used song lyric at this time of year, but it’s the lesson I’ll be taking into 2016 with me so it seems apt!  It has been such a long long time since my last blog post – because life can really get in the way sometimes.  And it really got in the way for me recently.


The thesis.  Those dreaded words that every postgrad treats as a bittersweet symphony of work and research.  As some of you may know, my research was focused on special education legislation in Ireland.  And from May until November I spent each and every day pouring over books, interviews and fact sheets on my thesis subject.

Pre-submission thesis selfie
Pre-submission thesis selfie

Unfortunately for me, my health got in the way of the writing too – namely a broken wrist bone in July, followed by a complex appendectomy just a short few weeks ago.  Yikes!

The view from my hospital bed during recovery - the chocolate had to wait until I was allowed return home
The view from my hospital bed during recovery – the chocolate had to wait until I was allowed return home

I will detail just exactly how tough 2015 was in another blog post… But this one is just to let people know I’m back on the up. And also, a chance to remind myself that 2016 is a new year.  With 365 new pages for me to decorate with stories, photos, smilies, quotes… There are going to be times when the pages will be blotted with ink, and other times when these pages will be tear-soaked.  The most important thing I learned in 2015 is that you can only ever live in the here and now; the past is behind you, the future in front.


You are the author, you are the story teller.  Your story must continue, so use a semicolon if you have to.


Why I’m Glad to be Part of the Cork Rose Family

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Let me preface this piece by saying that what I am about to write is entirely my opinion, borne from my own experience of the Cork Rose Selection 2015 – it does not represent or purport to represent the views of anyone involved in the Rose Selection process, it is just my free opinion, my two cents if you will.  I have decided to write this in response to some of the negativity I have been experiencing online since taking part in the Cork Rose Selection earlier this year.

me and art


The Rose Selection, I’m sure many participants will agree, is not the typical beauty pageant which many online warriors paint it as.  It does not display itself as such either.  For me, the Rose selection was so many different things.  It was a chance for me to step out of my comfort zone, it was an opportunity to foster links and network with other young women who have similar interests to me. it was a chance for me to represent the fantastic charity Suicide Aware and get their message out there, it was a chance for me to be celebrated by others for overcoming obstacles that I don’t always admit are there.  And of course, it was fun opportunity to experience a lot of cool things I would have never had the chance to had I not entered – including the Rose Tour around Cork and the Mallow Races too!  It also gave me a number of opportunities after the process had ended that may not have been open to me had I not participated.


It does what it says on the tin.  It celebrates young, inspirational, educated, independent women in a modern Ireland.  What is wrong with that?  I remember the words of one of the organisers on the Friday night before we went on stage, “There is no winner, there is a representative of Cork.  By having the courage to walk in the door tonight, you are all winners regardless”.  It sounds cheesy but its true.  And that was the message we got continuously throughout the selection process.


Each county/State Rose is seen as a representative of other women in her locality. What I personally found about being a Rose is that you can be someone who can act as a role model for others, that taking part in the process is a challenge in itself and that anyone who has put themselves forward for it should be proud and is always considered a Rose – it takes a lot of guts to believe in yourself in a country where begrudgery is a common pass-time for many.


I have been personally offended by the number of friends of mine who have referred to it as a “misogynistic barn dance by a bunch of lovely girls on a stage in Tralee”.  Having taken part in the Cork Rose selection this year, I actually find it massively insulting that it’s compared to the “lovely girls competition”. It is far from misogynistic. We celebrate strong, inspiring, independent young women who can be a role model for others.


Others have launched attacks on what they perceive to be complete financial support by RTE for the festival, and that any charity work carried out is only undertaken by the woman who is crowned Rose of Tralee.  In my estimations, both of these accusations are inaccurate.  The Festival and its accompanying air time are mostly supported by the sponsors and advertisers.  Some may forget that the Festival is a fantastic opportunity for Irish companies to export their brand across the globe for a week in early August.  If I may say so, it is a great example of guerrilla advertising by Newbridge Silverware!!


In terms of charity work, there is constant charitable work being undertaken both during and after the selection process by those who continue to stay involved in the group.  During my time in the Cork Rose selection, we fundraised for Breaking the Silence and Pieta House.  And even after the Cork Rose selection was finished, we continued our charitable efforts for the Dessie Fitzgerald Injury Fund.  Furthermore, in Tralee, my fellow participants took part in the Friends of A 10K, to raise funds for cranial aneurism research.  Not to mention the numerous charities who have benefited from air time or stage time with a Rose wearing a sash bearing their name – anther form of guerrilla advertising.


As I said in the outset of this piece, it is just my take on the Cork Rose selection.  It may be different to the experience of others, it may not be.  But I thought it important enough to write about today, considering the Anti-Rose brigade seem intent on bashing any goodness out of the process, with accusations of misogyny and participants being labeled as “perfect breeding examples”.  There is a saying that goes “History is written by the winners”…. Well, this piece of history was written by one of the participants who did not make it to the Dome, and she’s still happy and supportive of the process.  So why can’t you be?

A Power Worth Harnessing

*This post is a repost of a piece I wrote for the Ógra Fianna Fáil website – click here to see the original piece.  I like to keep my politics and my blog work separate, which is why I’ve made one or two changes to the piece below.

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It’s fair to say that LGBT Pride marches haven’t been as traditional in Ireland as they have been in other cities and countries around the world for the last number of decades.  Those Pride festivals most prominent in my memory were the ones I would see covered in newspapers, like San Francisco and London.  As a child, I remembered thinking how pretty all the colours were and how everyone taking part looked like they were having a great time.  Of course, it did not dawn on a child to think such a colourful and populated march would be intertwined with a community’s fight for their equal rights as citizens. It just looked fun!

Fast forward to Dublin Pride 2015.  My third or fourth Pride march in so many years. I can see a definite shift in the mood of 2014 and 2015 from both onlookers and those marching. During the 2014 Pride marches I took part in, there was a mixed feeling of, well, pride obviously, for our friends, co-workers, neighbours, parents etc.  But there was a definite underlying feeling of foreboding as well, a feeling I would attribute to the knowledge that a referendum on equal marriage rights was coming down the line.  Even in twenty-first century Ireland, a society that was largely (though not entirely) accepting of all lifestyles and communities, there was a distinct feeling of fear at the fact that those who stand both with them and against them in society were to vote on extending civil marriage rights to same sex couples.  A fear that those born with civil marriage rights by virtue of their heterosexuality, those who are somewhat oblivious to the difficulties and discrimination faced by LGBT people and their families, would soon be deciding on the rights of one group in society.  That would make anyone nervous – right?

My dear friend Arthur Griffin and I showing our support at Dublin Pride 2015
My dear friend Arthur Griffin and I showing our support at Dublin Pride 2015

There was a difference in Pride 2015, and the world in which we live could not be more different. Different yet exactly the same in many respects.  Different, because Ireland had voted to extend civil marriage rights to all her citizens, different because both our LGBT friends and their allies alike had come together to ask Irelands public to treat them all as one, and to help bring an end to discrimination and hateful attitudes towards LGBT people, families and couples.  And Ireland delivered on this call for equality – with a 62.07% vote to allow all her citizens equal marriage rights.  I like to think that even the United States delivered on Ireland’s vote for equality – that weekend, a little over five weeks since the Marriage Equality referendum, was marked by the United States Supreme Court declaring that marriage equality was a right befitting each and every citizen of the States. I like to consider our little nation a bit of a trail blazer in that respect, don’t you?

But in some respects things are the same: the same because our LGBT friends’ relationships are just as valued to us and them as they always were, things are the same because, well, hell hasn’t frozen over Ireland because of a Yes vote. And things are the same because a vote to extend civil marriage rights to same sex couples hasn’t led to the loss of legitimacy of heterosexual marriages as was warned by some – my parents happy marriage of 27 years wasn’t instantly invalidated just because my friend and her girlfriend now have the explicit right by law to become wife and wife!  We have a lot to celebrate as a nation during this Pride Month and beyond.

We assisted in mobilising a majority to help in the fight for rights of a minority, and no matter what the cause was behind it, we should take pride in ourselves for that too.  I hope that this fight can take place in other parts of society where there are still major inequalities to be dealt with; education, disability rights, children’s rights, parental rights… the list goes on.  If Ireland could mobilise itself again to fight these societal inequalities and to help put an end to them, well, that would be  a power worth harnessing.

Finding A Rebel Rose

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Cork Rose Selection 2015
Cork Rose Selection 2015
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.

Our newest Cork Rose, Aoife
Our newest Cork Rose, Aoife
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!

Dress ~ Verso Hair ~ Aisling Kelleher Makeup ~ Claudia @ Seasons Beauty
Dress ~ Verso
Hair ~ Aisling Kelleher
Makeup ~ Claudia @ Seasons Beauty
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!11143487_476575165824448_4252663570901157107_n

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:

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?