Albinism – Beyond The Blonde

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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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.

Summer Sun

As some of you know, I was on a long overdue sun holiday last week – rakes of emails, tweets and Instagram posts have been totally ignored. While I was posting pictures here and there, I did my best to just sit back, relax, and enjoy a little disconnection from the madness for a week.

Chilling by the pool while on holidays in Puerto Del Carmen, Lanzarote

Right away, I know a lot of you are probably thinking “sun holiday, wouldn’t that be a nightmare for someone with albinism?”. And in the past I would definitely have agreed. If you ask my parents, there wasn’t one family holiday I went on in the past where I didn’t get some form of sunburn. It always seemed that no matter how many times I got into the pool with a t-shirt on or lathered myself in Factor 50 suncream I would always end up roasted and as red as a lobster! Nearly every holiday – even the Staycations we had here in Ireland – I always got a burn, and bad one at that.

Obviously, I had learned how sore the burns could be and as a (somewhat) mature 24 year-old, I decided I would do everything in my power not to get roasted this time – but I was determined to do it in style. From my experience, people can often overlook the psychological effect something like this can have. For me, anytime I’m out in the sun and there are all these tanned people soaking up the sun, it just serves as a reminder that “I’m different – I can’t do this”. And so, being careful in the sun in style is a diversion tactic of mine.

Myself, my dad Sean, and my brother Evan on the beach on one of the cloudier days

First things first – a spray tan was my first port of call before heading off. The thinking behind this was twofold; I’ll look tanned when I get there so I’ll fit in, and also there is an SPF in the spray tan my local salon uses so it’ll protect my skin too. Of course, I’m not silly enough to think that this SPF will keep me completely protected…. And so I bought a bottle of Sally Hansen fake tan and a brand new tanning mitt to pack into my suitcase. After a little research, I figured that because I would be applying ‘Sally’ a few times a day, the SPF 20 in it would act in a similar way suncream does when you reapply it. So there, I was sorted – I could wear my bikinis, sun hat and sun dresses without looking pasty and – lets face it – standing out.

I forgot to pack the tan and mitt!!!!!

So I’m sitting by the pool wearing a dressing gown on the first day because my plan fell apart – and I had refused to pack any ‘just in case’ sunscreen so I was in double trouble!! Luckily, I kept entirely covered by either shade or light clothes while at the pool that day, and also had the wherewithal to take a few (completely staged!!) bikini photos. Later that night, I was on the search for fake tan – which is hilarious considering I was on holidays in Lanzarote. It even got to the stage where I was Googling ‘where can I buy Sally Hansen in Puerto Del Carmen?’.

As it was getting to the stage where I was resigning myself to having to lather pasty white sunscreen on myself I found what is probably the best sunscreen I’ve used. AND it has fake tan in it!! I HIT THE JACKPOT!!

This is the sunscreen I found - a good SPF and a bronzer! — This is the sunscreen I found – a good SPF and a bronzer!

The sunscreen I bought and used for the rest of the holiday is the Australian Gold sunscreen with a built in bronzer. Happy days – I was protected from the sun AND i was a little tanned looking too. I used this religiously for the rest of my holiday, and I didn’t have one burn. Not one – which is a first for me! As soon as I got home – sun burn free – I knew I had to let everyone else know about this little discovery I made. For me, its about convenience and ease of use – this sunscreen helped me to ‘fit in’ with a little bronzing and it wasn’t sticky or pasty on my skin. Everyone was a winner!

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Pale Skin Beauty by Guest Blogger Holly Barry

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Holly Barry is a fashion, lifestyle and beauty blogger and columnist with Hi Magazine, someone i would definitely describe as a style expert. We met recently, through the Cork Rose Selection process. I even remember her first style tip to me – “You’re hair is perfect, if you want to keep it for tomorrow then sleep with a scarf tied around it”. Sure enough, she was right! I’ve asked Holly to do a guest piece on pale skin beauty, as it is a question I get again and again! So have a read below – and visit the Along Came Holly website and Facebook page for more!

When it comes to pale skin there is always the fear that makeup will either look too dark or completely wash you out. I am a believer that your makeup routine should change according to the season. In winter I always find that my makeup tends to be a little heavier but in the summer I always go back to a light, natural look. This is especially important for us pale skinned girls (when we are not covered in tan!), so embrace your skin tone and give this makeup look a go.

It all starts with the base, firstly start with a strong SPF. Year round I always wear an SPF on my face. Although this is important for everyone I would recommend a strong SPF for us pale girls. Vichy has a great range of these and even has an SPF 60. Although this may seem high, at a minimum I would wear 50 during the summer. We have to keep our skin looking young and those dreaded wrinkles as far down the line as possible! On top of that I would start with a base. For the summer I always switch to a BB Cream. It is much lighter and gives you that dewy, sun kissed look. I have tried many and find the best for pale skin is the Garnier BB Cream. Thankfully they understand that pale skin requires extremely pale makeup! This one offers great coverage without looking cakey. Then to set that put a layer of Rimmel Stay Matte powder, to make sure it stays put for the day.

The Naked Flushed palette will be your best friend! This can be used for so many things which makes it a great product to invest in. Here you have your contour powder which can be used to extenuate your cheek bones, a blush and a highlighting powder to give you that summer glow. Not only this but you can use the contour powder in the crease of your eyelid and the highlighter under your brow bone, on your eyelid, on the inside corner of your eye at the tear duct and on your cupids bow. Naked Flushed is a no brainer!

With the summer heat, okay maybe not always in Ireland but maybe on your holidays, waterproof mascara is a necessity. There are so many great ones available; one that I always go back to is Maybelline Waterproof Great Lash.

Then onto the finishing touches. To keep those brows in place Maybelline Brow Drama ensures that there are no fly aways. And lastly, a small layer of Vaseline rose on your lips to give them a hint of colour with a glossy finish.

Holly's recommendations for pale skin beauty — Holly’s recommendations for pale skin beauty

Make sure to give this look a go and if you do tag me on Instagram or Twitter @Along_CameHolly.

I would love to see your finished makeup look!

Holly x

www.alongcameholly.com

Take a look at Along Came Holly for more info

Finding A Rebel Rose

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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.

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!

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

I Know It’s Up for Me, If You Steal My Sunshine

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Skin care in the sun eh? I bet you’re all thinking SUNCREAM right about now? A lot more than that can and does go into taking care of your skin in the sun though. I’d like to think this piece will be useful to everyone with different skin types, as well as my friends who have albinism too. And also, I’ll take this chance to point out that this isn’t medical advise in any way, shape or form – its just a rambling piece about my thoughts on the topic and what has worked for me in the past.

It can be hard to take care of pale skin in the sun, especially when friends are sallow skinned and seem to tan instantly – which makes them want to spend days sitting in the sun even more. In the past I’ve happily taken part in these sun sessions, but guess what happened? Burnt scalp, burnt arms, burnt ears etc. And aside from the dangers of anything more sinister than sunburn blisters, it is really painful and uncomfortable. So here are a few of my tips:

1. Check the weather.

There are apps for this so you have NO excuse not to do it. All during the summer months, I check the forecast every morning to check how intense the sun will be, if there are clouds due, and what times of the day that sunshine is expected. If you have business to attend to during the day, you might decide to do it at a time when the sun is less intense or when it is overcast. Above anything else, its helpful to plan an outfit – especially shoes! Trust me, you do not want to be caught in a pair of cute flipflops when rain is pouring down on top of you!

2. Choose your outfits wisely.

If I know it’ll be sunny on a particular day, I’ll plan to wear light clothes that will cover problem burn areas like shoulders or the upper back. You can still look bright and feel comfortable in summer clothes even if you are a tad more covered than friends. Shorts or strapless tops are a major no-no for me in the summer months, it is just too easy to get sunburned in those or to fail to apply suncream properly to these areas. A lot of people say black should never be worn in the summer either as it attracts the sun, although I wonder is that a bit of an old wives tale!

3. Suncream!

There is more to skin care in the sun than suncream, but it is a big part of keeping your skin healthy. Its important to pick a suncream that will give you the right protection of course, but also one that you’ll be happy to wear too. It’s pointless buying a suncream that is intensely heavy because you won’t want to wear it and it will be irritating to even apply. Personally, I have always found the sun spray types best as they are much lighter than traditional suncreams, and as they have a spraying nozzle, they are also easier to apply. Even the higher factor coverage in these sprays isn’t as gloopy as the typical sun creams are. Just remember to constantly reapply every hour!

4. Wear makeup if at all possible. And sunglasses!

This probably sounds a bit over the top right? But remember, most liquid foundations do have an SPF level within them. And its a lot nicer to have makeup with sun protection covering your face, rather than applying suncream. Keep in mind that the coverage in makeup isn’t that high though, and check your own foundation for its SPF level. Remember to keep sunglasses around you at all time – especially in Ireland because you may never know when you need them! Invest in a pair with good protection from the sun too – UV rays can and do damage eyes year after year, and so a pair of sunglasses with substantial protection are a worthy investment.

5. Do your best to sit in the shade.

Simple but effective, and you would think it goes without saying, but that’s not always the case. I always have to be reminded to sit in the shade! If you’re in the park with friends who want to sunbath, try and sit near a tree or statue that can give you shade form the suns rays, while still allowing your friends to bask in the rays.

6. Look out for moles and skin changes.

I can’t stress this enough. Moles that have recently changed shape or colour should always be observed by your GP, especially if they are in an area of your body which has been previously sunburned. For more info on what type of changes to look for, click here – because I’m not a doctor and this is just an opinion piece and not medical advice in any way!

Hopefully, this piece will be useful not just to those with albinism, but also to anyone who is looking to protect their skin from the sun! Anything you can add to this list of skin care in the sun? Drop me a line through the blog page! In the meantime, check out this sunny selfie I took with a meerkat in Fota Wildlife Park on the Cork Rose tour recently – the meerkat didn’t really cooperate though!

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 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!

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!

Don’t Let Pride Get in Your Way

Flash back to the end of August. I’d had a pretty jam-packed summer; trips to Dunmore East, Liverpool and Inis Mór. And now I was settling down to start my masters in Government, back in UCC. So I’m out shopping for the typical college stuff (pens, papers, highlighters) when I get a phone call. Its from the Irish Guide Dogs Centre and they’ve found a place for me on one of their Independent Living Courses. The course is taking place for the entire following week so I accept my place, pack a bag, and take all kinds of gear with me as its a residential course. Sounds like I did it without even a second thought, doesn’t it? Except there was a second thought, plenty of second thoughts.

Sometimes, I find it really intimidating to partake in some of the workshops/sessions/fun-days that are run for people like me with vision loss or blindness. I find some courses to be a total box ticking exercise – its a case of “ah sure we’ll run that course now and we’ll be done then for the year”. Depending on the organisation of some courses, you can go in waiting to feel empowered and then come out totally deflated. This was definitely a fear I had and kept thinking about all the way out to the Guide Dogs Centre in Ballincollig. I had all these reasons in my head why I didn’t need to go/why I shouldn’t go:

– I manage grand at home, I can do some things

– I don’t really need help from anyone else, I can sort it myself, why does everyone think I need heaps of help?

– If this is a box ticker in any way, I’m high tailing it out the door.

Well, what a surprise I got!

Arriving on a Monday, I was given most of the day to settle in and meet the others in the group, as well as the course instructors and the other staff. Together, we all got a tour of the building, and got to grips with the facilities that were there for us to use during our stay. Then one of our instructors explained the structure of the week to us, which basically consisted of us learning during the day, and making our own fun at night. The course was open for us to do what we wanted with it. So as a group, we all came to a consensus about what we wanted to cook for lunch and dinner that week, made a list of what ingredients we needed, and decided on some extra household related things we wanted to learn too. So we decided on smoothies, lasagne, casserole, curry, wraps, pittas, banoffee pie, and brownies.

Now, the whole point isn’t to learn how to make these specific foods, its really to equip us with skills we can use to make all kinds of meals for ourselves, and by extension of that, to make ourselves more independent in a safe way. We learned how to use our other senses to tell how well our food was cooked (sound, smell, touch), what foods or sauces we were using (smell, touch), how to layer foods (touch, sound), how to use particular appliances safely (touch, sound), and how to make sure our area was clean after we’d cooked without necessarily using sight.

While we did have our instructors with us the whole time we were in the kitchen, it was still a case of “you must cook this – no one else will cook it for you”. And that is exactly the kind of Independent Living Course someone like me needs. Its about empowering ME to do something and finish a job MY WAY, no matter how different it is as long as its safe. It is so daunting at my age to realise that in the next year to three years, I’ll be living on my own, cooking on my own, cleaning on my own. And its daunting because I’ll be the one in charge of me, I won’t always have my parents or my brother to fall back on. And I know they must wonder about it, as do I, thinking “Will she manage? Will she cope?”. So for me. getting these kind of skills was massively important. It doesn’t just benefit me, it benefits those around me too.

Pride is a good thing. But pride could have put a stop to me going out to the centre and learning all these fantastic, new, and badly needed skills. Pride could have stopped me meeting new friends and us all sharing our experiences with one another. I’m so glad I took that particular leap of faith and didn’t let my hesitation or previous experiences stop me – I would have lost out on so much. I can’t speak highly enough of the training and empowerment I got from this course, words could never describe it well enough It taught me a lot about not letting pride stand in my way too.

If you would like to support the work of the Irish Guide Dogs For The Blind, or want to find out more about their services, please click here where you can donate through their webpage or search through the different types of courses run.