An open letter to Minister for Education and Skills, Richard Bruton TD

4 July 2016


Richard Bruton TD, Minister for Education snd Skills

Dáil Éireann,

Kildare Street,

Dublin 2.

An open letter to Minister for Education and Skills, Richard Bruton TD

Dear Minister Bruton,

My name is Jessica Ní Mhaoláin, I’m a 24 year-old student from Cork City.  I’m writing to you to give you an insight into my world as a student with a severe vision impairment, and I would also like to offer some recommendations to you as a service user of special education services for more than 20 years.  I completed primary and secondary school, and am currently applying for a PhD in UCC, where I have  already completed a BSc in Health Promotion and a Masters in Government.  My masters research was around the area of special education, and my PhD topic (if approved) will follow on from it.  I’m hoping that by reading this letter, you will take some time to think about the plight of many other children, teens, and adults like me who are currently working their way through the education system – some with more success than others, as is the case in my situation.  Hopefully, an insight like the one I will write you can assist you in deciding how best to apply funding in sections of your department ahead of the next Budget, and may also open a dialogue between a service user, like me, and you as Minister.

Firstly, I would like to give you an overview of my disability.  From birth, I have suffered from a condition known as oculocutaneous albinism accompanied by nystagmus.  Oculocutaneous albinism is a rare disorder due to a genetic abnormality that effects the skin, hair and eyes; my body cannot produce melanin because of it, and therefore my optic nerves failed to develop properly.  Because of this malformation, I can see about 3-4 feet in front of my face, and after that my world starts to blur.  I also suffer from an involuntary movement of the eyes, known as nystagmus; my eyes ‘shiver’ (for want of a better word) and this prevents me from focusing my eyes on anything, including when I’m reading or writing.  As you can probably imagine Minister, this disorder has a considerable effect on my day-to-day life; I use a cane to navigate my way around, I cannot drive, I cannot read menu boards or small print in newspapers, and it also effects my fine motor skills which restricts my ability to write neatly or draw diagrams.

My journey in the Education system began in the mid-nineties when I started at my local Montessori in Ballyphehane, Cork.  At first, the differences between other children and I went largely unnoticed – we were all learning skills at the same rate as 3 and 4 year-olds do.  It was when I started primary school that my disability really began to hinder my ability to learn at the rate my schoolmates were.  We learned, as every child does, to read and write through exercises on a blackboard demonstrated by our teacher.  Similarly, we learned about history, geography and maths the same way.  But I couldn’t see the blackboard from my seat at the front of the class, and there were no vision aids available to me at the time.  I didn’t fail to learn, however I learned far slower than my friends and fell behind quite early in my schooling – despite the help I did receive from my school who, at the time, had no legislative requirement to assist a child like me but did so because it was what I needed.  Being honest and very candid about it all, I was almost nine years-old before I really grasped how to read and write properly, and this only occurred because services began to step in and help me – the Education Act of 1998 came into force but did not really ‘filter down’ until around 2001 for me – I was almost 10.


Services I availed of in school were largely in the area of teaching support and resourced learning hours.  These were put in place to help me catch up to where my class was – I missed the basics of reading, writing and maths, and unfortunately I still feel I never regained what I have missed in those starting years.  The help came a little too late for me, because of many reasons; financial decisions within the Dept; lack of understanding of my disorder; lack of training for teachers in different learning modes; and lack of classroom assistance like an Special Needs Assistant.

Luckily, the availability of these services improved within the Primary teaching setting after I moved onto secondary school, something I was so happy about.  Until I heard they have begun to disappear again.  Before the last election in February I spoke out about my worry at the effect recent special education cuts in Cork would have on the future of the children at the centre of these cuts.  I know better than most, Minister, that a child with any kind of disability is at risk of failing to learn the basics if the help of a scribe or SNA isn’t in place for them – my case isn’t just a once off.  My heart broke for the families of these children when I learned that their SNA’s had been cut – for me, that would mean a ‘working pair of eyes’ were taken from my classroom experience.  An SNA is more than a classroom assistant to children with a disability – for some of us they can replace a sense we have lost such as sight or hearing, for others they are a physical support if their impairment has left them unable to write.  And especially for children on the Autism Spectrum, these assistants are a major support for them as they integrate into mainstream aspects of school life.  I sometimes wonder if the role of an SNA is underestimated or misunderstood by some in the education sector, and perhaps this is why their position is sometimes treated as a luxury by Department officials.  Of course, I’m fully aware that financial resources are an issue in every government department and also the idea of special education is to hopefully allow the child independence from the assistant at some point – but depending on the disability the child is dealing with, it isn’t always practical to have the aim of eventually removing such an important support.

Although I have been lucky in how I got through my school years and made it to a fantastic university which has been constantly supportive of my needs, it is just that – luck.  I have been lucky with the teachers and SNA’s I have met along the way.  And I’m sure you would agree with me when I say that no child’s education should be left to chance with only luck on their side.  Education is a basic human right for us all, education the tool that helps people escape from the poverty trap, education is our way to integrate into different aspects of society and enhance our lives with both knowledge and the enjoyment of reading our favourite book, or discussing a recent play – or just being able to balance a chequebook.

Minister, I intend to write to you monthly with these education updates and with ideas I have researched into improvements that can be found in the Special Education sector.  There are so many things that can be done – big and small changes – that they are too numerous to detail in one letter alone.  I don’t believe that your government, or any other government before you, has ever intended to wilfully neglect the Special Education sector.  However, I do believe you and your officials can benefit from the input of a service user like me to assist in targeting areas which need improvement.  As I have said above, I have been lucky to find my way successfully, but many coming through the system before and after me have not been as lucky.  My hope is that you or your staff would be open to establishing a rapport with me.  Although I have the research experience having completed a Masters Thesis in the area (which I will happily forward to your office should you wish to read it), I also have the practical experience of dealing with the Dept of Education as a service user for more than 20 years.

I believe you and I both want the same thing for children with special educational needs – we both want them to have an equal playing field when it comes to learning and reaching their full potential.

Is mise le meas,

Jessica Ní Mhaoláin, BSc., MBS.


Iris Dances Around the Room

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Nystagmus – a mouthful of a word.  A condition I am still trying to understand.  But a condition which has effected me along with albinism since birth.  Medical and health professionals describe Nystagmus as “an involuntary, often rapid, movement of the eyes”.  This description will ring true for so many sufferers of nystagmus around the globe.


There are a number of nicknames given to it; ‘dancing eyes’, ‘wobbly eyes’, ‘shivering eyes’, the list goes on and on.  For me, I personally used to call them “my shivery eyes”.  And I was really lucky because all throughout my schooling, my friends were used to it.  Once or twice we even used it to scare a stranger – my shakey eyes were my party piece if you like!  We used to have great fun with it.

It was in later life that I began to have a few issues with it.  Teachers would often remark that I ‘had a dreamy look’ while they taught me.  This seems to be a common complaint of educators of children and young adults with nystagmus – the lack of eye control and increased movement leads teachers to think you aren’t paying attention.  This is further compounded by additional sight issues if they ask you to go through what they have just written on the board – nine times out of ten you obviously cannot read it.

On a personal level, there are definitely things I find will exacerbate my nystagmus.  In general, most people tell me it isn’t very noticeable unless I am straining to focus on something.  But if I have been stressed out – exam time for example – the shaking gets far worse and becomes very noticeable to myself and others.  Similarly, if I have had a run of 2 or more nights where I haven’t had enough sleep, its a similar situation – more pronounced shaking.  The video below was recorded during a week where I was heavily reliant on my laptop – spending almost 5 to 8 hours finishing assignments.  All eyeball and eyelid movements you will see in this video are entirely involuntary.

This was definitely one of those times where it was at its worst.  But as I said, most of the time, those instances are few and far between.

So, have I described nystagmus correctly? And how do my readers find it affects them or their child/children?  I’m sure its not the same for us all.  For further information, check out the Nystagmus Network!

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!


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!


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?     

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!

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