2017 MUST Be Better

This year...

2016 was a really hard year, I think we can all agree on that.  I know from me personally it was probably the hardest year I have had to deal with.  But this is a new year so I don’t want to focus on the bad –I want to focus on the good that is to come.

If 2016 taught one thing, it’s that your perception of any situation is everything. The way you perceive a situation will dictate the way that you handle it.  So I knew it was important to go into 2017 with the positivity that I would carry with me for the rest of the year.  Start as you mean to go on – isn’t that what they say?

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On Monday January 2 I did something I don’t normally do. I organised myself for the next morning; clothes selected, make up at the ready, handbag packed – I even picked out matching socks! For 2017, I wanted to make more of an effort with my appearance. I spent most of 2016 with my hair in a messy bun, makeup-less, and wearing clothes that didn’t even match at times. In 2016 sometimes I just didn’t care. But this is a New Year so I’m going to care more. I’m happy to say that this is one resolution I have kept up so far. And considering we’re only a week in, that’s longer than most of my resolutions have lasted previously.

The next day saw one of the more dramatic changes – a good 12 inches was cut off my hair by my stylist at Colours.  New Year, new me. I cant really describe what a big change this was, so I’ll leave you with the before and after photos instead.

Before....
Before….
...And after!
…And after!

The final change to bring into the New Year with me was to make my lifestyle healthier. I one to see a change in my body.  People think that I exude confidence. But those of you who know me will know that I suffer with depression and self-confidence problems. At times in 2016, this depression crippled me and at one point I allowed it to takeover my life. It affected my confidence; it affected my ability to work; it affected my relationships.  The talk therapy and the meds definitely help, but I felt I needed an overall lifestyle change.

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So I have started a new health and fitness regime.  I signed up for a year with Dan Sweeney Health and Fitness. As well as tailoring a workout plan to help me tone up, I have also gotten a lot of guidance around nutrition and my food choices. From what I’ve read from others who struggle with their mental health, diet can have an effect on recovery too.  Just like it does with the physical health.  So today is the day that I do my first big food shop for the new diet.  I can’t wait to see the results –  physical and mental.

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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.

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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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.

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.

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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 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

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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