issue 1.

The Visually Impaired

Illusion, Published four times per year, is a personal endeavour to offer myself andwider society an insight into topics surrounding some of the conditions or stereotypes that we know little about. Conditions that we may well encounter in our day to day lives, sharing our pre-conceptions, yet knowing little if anything about the people at the core.

Contents

6 | Illusion

8 | Retinitis Pigmentose

10| Case Studies

22| Overview What have we learned.

24| Issue 2

A day in the life of two sisters who both suffer from Retinitis Pingmentosa.

A brief overview.

This issue.

Issue 1.

Illusion’s aim is to help the wider society understand subjects about little is known, or haven’t had the oppurtunity of meeting someone in the position to learn more. Illusion fills the void between knowing little and living life in their shoes as they say.

The topic of this issue is Blindness and Visual Impairment. Illusion had the opportunity to meet and spend the day with two sisters, both suffering from a condition called Retinal Pigmentosa. This gradually deteriates the vision inevitably leading to blindness.

We all have our preconceptions about the blind without knowing it from the visually impaired. From research and spending time with Ingrid and Astrid it appears that some of those preconceptions might change post-Illusion.

Retinitis Pigmentosa

| Night blindness | Loss of peripheral vision

Symptoms usually start during young adulthood, although RP may be seen at any age.

The symptoms described above may not necessarily mean that you have retinitis pigmentosa. However, if you experience one or more of these symptoms, contact your eye doctor for a complete exam.

Retinitis Pigmentosa (RP) refers to a group of diseases which cause a slow but progressive vision loss. In each of them there is a gradual loss of the light-sensitive retinal cells called rods and cones.

Most forms of RP are inherited or genetic, though its signs do not necessarily appear in every generation. Learning more about your family history may help you and your doctor to make informed decisions about treatment and eventually a cure for RP.

In some cases, RP may be associated with other health problems, such as hearing loss. People with RP may also develop other treatable eye diseases, such as glaucoma and cataract.

A Day In

The Life Of.

Astrid Middleton

We all have our preconception about the visually impaired, Can you describe your impairment to help others understand what it is actually like? Retinitis Pigmentosa is often described as “Tunnel Vision” because the field of vision becomes restricted. I have a narrow field of vision, so when I look straight ahead I can basically only see directly in front of me. However, as the disease has progressed, the central vision that I still have remaining is no longer detailed or clear but it is useful and I have learnt to adapt in order to manage. Also, light is a contributing factor; in natural daylight my vision is much more efficient yet in low light or dark conditions then I am unable to see much if anything. I still have some colour perception but again the light conditions affect the clarity of things. I can’t recognise faces from any distance so I rely on voice recognition and memory. In familiar surroundings my vision is more useful as memory does all the hard work but in unfamiliar places then I feel to have more of an impairment. I can no longer read standard print without the use of a CCTV magnifier and I use the Voice-Over settings on my IPhone, Ipad and laptop in order to read.

How do you perceive other peoples opinions on your disability? In my day-to-day life, with people that I know, I can learn to forget the fact that I cannot see as well as others. Most people are naturally helpful whilst recognising my desire for independence but on occasion people have found it difficult to understand. I have never been comfortable highlighting the fact that I am Visually Impaired therefore; in certain

circumstances I may have appeared ignorant or clumsy. My argument for this is that there are plenty of idiots in the world but they do not brandish the fact across their forehead so why should I tell people that I cannot see in order for them to make automatic assumptions before they even know me. In theory I am registered blind but I prefer to say that I am Visually Impaired as the word “blind” seems to have connotations raises questions... “Where is your white stick?” “Why don’t you have a Guide Dog?” “Shouldn’t you wear dark glasses?” I understand that it is down to a lack of understanding together with the fact that in society we are faced with a wealth of pre-conceptions. I have no issues with explaining my situation to people but I prefer my so called disability to be part of me rather than letting it dictate the person whom I am; I refuse to put it before me.

Do you prefer people to know about your visual impairment? I try and gauge a situation before I tell people because although I don’t always want people to know, there are times when it is necessary for me to explain. Wandering aimlessly around the Co-Op is a regular occurrence because simply asking where the Gold Blend is would be handing my independence on a plate but where it is appropriate and necessary I will usually start by apologising for the fact that I can’t see and wait for their apology before we can move on...

Do people treat you differently if they know? Humans can be funny creatures; some people seem to have an innate instinct that helps them empathise and adapt to the needs of others whereas others simply do not get it! As a general rule people’s

initial reaction is to apologise and then sympathise but this is still a preferred reaction to those who simply just proffer their ignorance.

What are your main struggles in every day life? I try not to dwell on the struggles too often as pretty much everything that I do would be a damn sight easier with 20/20 vision. I attempt most things apart from driving of course and I leave the cooking to my husband but not purely because I can’t see properly! Living with any sort of disability or impairment is a challenge in itself, nevertheless I would rather remain positive and concentrate on the things that I can do rather than those that I can’t. I usually strive to get over most hurdles or at least walk around them so to speak.

Do you develop other strategies to help you compensate for your loss of vision? I think the definite answer to this is yes. I probably can’t think of them all because they are almost innate now... * Listening is key...what I can’t see, I can definitely hear and I can even hear when my children are doing something that they shouldn’t. * Touch - Looking for things is done with feel so hands are almost as good as eyes in most cases. * Memory - Putting things in specific places is essential to one’s sanity and retaining information/appointments. Also having set routes when out and about. * Smell - Not always the most pleasant way of identifying if an item of clothing is clean or not but it’s almost fool-proof.

What do you feel you miss out on the most?

I know that if I really wanted to get depressed about things then I could... • Going to watch your children at sport’s day and in school plays and not actually being able to see them as they are too far away. • not being able to pick up a picture book and read it to your little one when reading aloud and stories are a personal love. • Not being able to jump in the car when it’s pouring with rain or drive the boys somewhere more exciting during the holidays. • Not being able to read your child’s handwriting. • not being able to choose your own clothes without someone reassuring you that it is nice or in fashion even.The list is truly endless, however, if I were to think in that way then I would be in

a very dark place. The future scares me from time to time, wondering if my vision will deteriorate further but again we have to live for now and be thankful for what we do have. A visual impairment is not life threatening and I have my health and other senses. There is always someone less fortunate and that is the way I must look at life.

Do you feel it has been harder to gradually lose your vision or to be born “blind”?

There’s no easy answer to this question but I am grateful for the gradual decline as I have the memory of what things looked like in detail and I have never known any different. Perhaps someone with no vision would be more than grateful for the vision that I have even though on paper I

am classed as blind. On the other hand, people with more useful vision than myself still find it difficult to cope. We are all different in our outlook and tolerances.

Are people shocked when they realise you have a partner and children?

I don’t think people are shocked but I have been asked “How do you manage?” I think a lot of that is down to the fact that people cannot begin to imagine looking after children with impaired vision but at the same time I have a friend who is profoundly deaf, who has raised three children and for me I cannot begin to imagine what it must be like not to be able hear your children. Parenting is not easy full stop but all it means is finding different strategies and hoping that your children

grow up with empathy and the ability to care for others around them. Who cares if they might have odd socks or a dirty face from time to time...I still nurture and love them regardless of any vision loss.Do you ever wish it was different?

I would be lying if I said that I didn’t wish that I could wake up one morning and see the world through “normal” eyes. Just think how much easier that would be! But would it change me? Probably, it would.Yes, I wish that I could run across my living room without standing on a Lego brick, tripping over the dog and whacking my knee on the coffee table but if I simply slowed down then I wouldn’t do those things anyway. Yes, I wish that I could perfect my make-up, style my hair, jump into my Mercedes Benz and speed of to my job as an airline pilot but then again...

If losing my vision over time has taught me anything then it has taught me never to take anything or anyone for granted and what doesn’t kill you literally does make you stronger!

IngridLomas

“BlindIs

Me.”

We all have our preconception about the visually impaired, Can you describe your impairment to help others understand what it is actually like?

I have had low vision since birth, however the Retinitis Pigmentosa deteriorated during my teens leaving me with very limited vision.I still consider my vision as being useful although I realise that others would most probably be petrified if they were to look through my eyes.My vision is not clear and is greatly affected by varying light levels and I read Braille and use assisted technology as I have no useful central vision. I have been a Guide Dog user for four years and I also rely heavily on memory and touch in order to manage.

How do you perceive other peoples opinions on your disability?

I think it is the preconceived idea that to be blind is to see nothing at all. People seem to question how I come to manage but I believe this to be because they do not know how they would manage themselves.

Do you prefer people to know about your visual impairment?

I do prefer people to know otherwise they often just think that I am rude if I walk into something. I feel that people are more willing to help once they are aware. On the other hand I don’t particularly like it when people appear to feel sorry for me.

Do people treat you differently if they know?

I feel that people do sometimes treat me differently, purely because of their sheer lack of understanding. However, once people get to know me then they soon realise that I don’t want to be treated any differently.

What are your main struggles in every day life?

I don’t necessarily consider anything as a struggle but admittedly things do take a lot longer to do. I am a positive person, therefore I have a positive outlook on life and would rather see things as challenges rather than struggles.

Do you develop other strategies to help you compensate for your loss of vision?

The list is endless...

• I vacuum in bare feet so that I can feel that the carpet is clean.• when washing up I use my hands to check if the dishes are clean.• I memorise the settings on the washing machine.

In summary I use all my other senses to do things and rely on my hearing, memory and touch greatly.

What do you feel you miss out on the most?

In my opinion, you can’t miss what you never had. I can be quoted saying “Blind is me”.

Do you feel it has been harder to gradually lose your vision or to be born “blind”?

I am grateful that my condition has deteriorated gradually as that way I have developed coping strategies and I have been able to built a memory bank so that I can still visualise colours and family members even though in reality I cannot really see them.

Are people shocked when they realise you have a partner and children?

I don’t think people are shocked that I have a partner but once they realise that I have three young boys then they sometimes seem a bit taken back. I feel that is only because they cannot imagine themselves in my shoes. Once people get to know me though they often tell me that I am inspirational which is very nice of them to say.

Do you ever wish it was different?

In all honesty, I do not think I would want a cure if one was to be offered as I fear that it would change my personality. So much of the person who I am today is shaped by the fact that I am Visually Impaired and therefore it is almost impossible for me to think of life being any different. Perhaps life would be easier in one sense but you can’t change history. I have made it this far and I will continue to overcome the challenges that may or may not lay ahead of me.

OverviewWe are born into a society where “normal” is a set of preconceived beliefs, ideas and values.The truth is that we can only begin to imagine what the world is like through someone else’s eyes and we ought to treat one and all as the unique individuals whom they are rather than what society wants them to be.

Who is Blind... Us or them?

IssueTwo.

For Issue Two, Illusion wants to delve into one of the subjects that inspired the concept behind the magazine an Issue that is often ignored when really it seems to be an on-going problem around many of the cities in the UK and the rest of the world.

The topic of homelesness is something both Illusion and the majority of society know very little about and think this has an affect on the way people treat people who may have got themselves into that situation in a different way to how we might think.