About me

I was recently asked to write a piece all about me and disability, the scope was to challenge perceptions and raise awareness of visual impairment, this is what I came up with.


About me
By Jemma Brown

Hi I’m Jemma I’m 19 and about to start at Solent University to study journalism. I currently live in Gosport although I will be moving into halls in a few weeks with my guide dog Gus. I have multiple disabilities including visual impairment and a mild mobility impairment. I have the philosophy that I can do pretty much anything, it may take me longer, I may do it in a different way and it may be more difficult but I will do it. This is all about my disability and how it affects my day to day life.

The eye stuff

The eye starts to develop from 12 weeks of pregnancy, when my eyes where developing they did so with a cataract, this damaged them in many different ways, leaving me with a collection of eye conditions. I was diagnosed as having eye problems when I was 8 weeks old I then had my first operation to remove the cataracts at 11 weeks.

My mum also has the eye condition as it runs in her side of the family, although she has considerably less vision than me. I also have a blind aunt and a partially sighted cousin.

Throughout my childhood my vision varied, at one stage it was thought that I may one day have enough useful vision to drive, however that was not the case.

Because of the cataracts the pupil in my eye did not develop as it should have. I had surgery when I was younger to make my pupils bigger as they where too small. As a result of the surgery my pupils cannot get bigger or smaller to adjust to changing lighting conditions. This means my vision is considerably worse in the sun and when there is not much light.

When I was 11 my eye condition deteriorated, as a result of the surgery I had when I was younger, the fluid inside the eye ball was not draining away properly causing increased pressure in the eye. This is known as glaucoma and is relatively rare in people my age. The build up of pressure inside the eye can damage the optic nerve leading to irreparable loss of vision. To attempt to control the pressure inside the eye I was put on medication, and have been on several different treatments.

Unfortunately in May of this year the pressure inside my eye was found to be higher than it should be, up until that point my glaucoma had been under control and stable for the last 4 years.

As mentioned earlier I have quite an extensive collection of eye conditions (I’m greedy!), so I’m going to give you a brief run down:

Nystagmus - involuntary eye movement. My eyes often wobble without my control, I don’t normally even notice. It produces some very interesting photographs though!

Photophobia- excessive sensitivity to light. (NOT the fear of light) I am dazzled by light; car headlights, reflections, street lights and the sun all make it more difficult to see. I have done A level acting so am used to working under bright lights when I can’t see a thing. Having Gus has really helped me to be able to get out and about in the sun or when it is dark. The annoying thing about photophobia is that it’s a no win situation, can’t see in the sun and can’t see at night because of all the lights that are around! (Clubbing can be an interesting experience)

Squint- a squint is when they eye appears to be ‘stuck’ in one position. For me this meant that I was severely cross eyed as a child, I had surgery and eye patch therapy to correct this, but my eyes often turn inwards. This is linked to Nystagmus, because the muscles in my eyes are weak and under developed.

Corneal oedema- excess fluid in the cornea causing it to become cloudy. I have to confess that I actually don’t know very much about this one as I was only diagnosed with it in May of this year. It can be caused by glaucoma or previous cataract surgery. Right now it is relatively mild in my case and sometimes causes me to have blurry vision.

Glaucoma- excessive pressure with in the eye leading to optic nerve damage.

Cataracts- the clouding of the lens.

So what can I actually see? There is no simple answer to that question. The vision in my right eye is not very good most of the time I can just see fuzz. With my right eye I can read the top letter of the eye chart from 2 feet away. Fortunately my left eye is a lot better than that. In perfect lighting conditions I can get quite a long way down the eye chart. My vision varies immensely, for example I can hardly see anything at all outside when it is sunny or dark.

I have issues with perception of distance because I have one eye doing most of the work. So I often misjudge gaps, bumping into door frames is a regular activity. Having rubbish perception of distances means that I am very uncoordinated and clumsy.

I also find it difficult to recognise people, don’t take it personally when you next speak to me and I have no idea who you are. Life would be a lot easier if everyone who spoke to me did so by starting off saying their name and how I know them.


The bone stuff

I have a slight mobility impairment because I have odd joints! I have hypermobility syndrome meaning that a lot of my joints have a larger range of movement than they should have. The main downside of this is that I have some very weak joints and sprain things quite easily, although I have some amazing party tricks with the odd things some of my joints can do! I also have some misalignment issues with the lower half of my body; I have twisted hips, a twisted pelvis and twisted tibias (tibial torsion). That’s a bit of a mouthful but all it really means is that my knees ankles and hips are not lined up properly so I have a few issues with them. The main problem that causes is going down stairs, I’m fine going up but I find going down stairs quite tricky and I lack balance.


About my life

My independence is incredibly important to me. At this stage in my life there are still things I find difficult and there are times when I have to ask other people to help me to do something, but I try to be as independent as possible. Reading is possibly the area where I need the most assistance from other people, its not that I can’t read, it’s that I can’t read ‘standard’ size print. The font size I use most of the time is 18 with a really bold typeface.

I think that having a disability gives me potentially better problems solving skills than a person without visual impairment. I am always coming up with adaptive ways for me to be able to do something. Usually the best solution is also the simplest, whilst on my duke of Edinburgh expedition I put pieces of blue tack on the compass to allow me to do bearings – simple but effective.

My independence whilst out and about has improved greatly since I got my guide dog Gus. Gus is my first guide dog and goes everywhere with me, he is great as he often guides me around obstacles that I don’t even notice. Gus also really enjoys finding things like crossing buttons, doors and bus stops; I can now also go out knowing that I am not going to bump into anything!

As previously mentioned I am a full time student and I am about to go to university to study for a degree in journalism. When I’m not studying I can usually be found out and about somewhere, I play a Paralympic sport called goalball as well as blind cricket. I’m a really sporty person and I enjoy going to the gym and playing most sports, I like playing and sometimes watching football, badminton, tennis and cricket. I will be the first to admit that I am rubbish at most sport due to a complete lack of coordination but I still enjoy taking part.

I am also a (apprentice) Guide leader currently working with girls and young woman ageing from ten to fifteen years old. Guiding is something that I really enjoy I have helped to run various camping events and also taken a team of girls to complete in a county football event. Being a guide leader gives me the opportunity to be a big kid taking part in carnivals and all kinds of activities. Through guiding I have done kayaking, archery, rifle shooting, rock climbing, abseiling, skiing, sailing… the list is endless. When I am not out having fun with the Guides I also work as an adviser on visual impairment at national level, I have helped to write a book on including people with disability’s in guiding activities. As well as delivering disability awareness training.

When I am not doing all of the above I also manage my websites and blog for the BBC’s disability website Ouch! Writing is something that I really enjoy and I hope to do a lot more of in the future, I am also hoping to harass the lovely people at Ouch! for some work experience!

As you may have gathered I am a very active person and I do not like to let my disability get in the way of what I want to do in life, I probably want the same things out of life as any other person regardless of disability. I think it is important to challenge people’s perceptions of disability and that many of the barriers people with disabilities face can be overcome, quite often it is other people’s attitudes that provide the biggest barrier for a person with a disability.

Well I passed

I have indeed passed all the AS and A levels I took this year at college, I also passed my level one British sign language which was good.

Gus came with me to pick up my results and was a bit hit with everyone we had a few photos of us taken which may be used in college publications.

Finally my DSA application is all sorted, I had problems because the equipment I need came about 2 thousand pounds over budget, but luckily some items have been changed a little bit and swapped around and it all now comes in budget and is being delivered in a few weeks.

I can't wait to get my 15.4 inch macbook pro!

Fashion advice!

OK I have done something I promised myself I would never do!

I have brought myself some proper blindy fit over cover all sunglasses.

Now in the picture on the website they did not look too bad there are in plum which is supposedly a purple colour, and they had a kind of fade down kind of effect so there where dark at the top and slightly lighter at the bottom. now in reality they are a VERY VERY dark grey with a hint of puple, not quite the shade I was expecting but that aside I need to know can I get away with wearing them in public or do they look seriously bad on me!

This is a serious question so please be brutally honest this is me asking for YOUR fashion advice!

So here's the picture

Fed up of number crunching

Well joy of all joys my DSA budget for technology to help with my course has gone WAAAAY over budget I have spent the last 2 days trying to work out what I can delete of the list of things I need, downsize or try and persuade uni to purchase.

It's supposed to be easy but no, it couldn't just run smoothly this is me we are talking about.

On top of that I have to find insurance for all the stuff that the DSA is paying for and get quotes. (luckily the LEA pays for the insurance of the equipment) its really complicated because lots of the stuff is really specialised to me as a Visually Impaired person, I'm filling out forms trying to work out if a talking spell checker come under computer equipment or portable electronics. its of course the same for the CCTV (video magnifier) talking dictaphone etc. I also have to take out a separate insurance policy for all of my belongings so its all really complicated.

I have had enough!

It's been a while

Wow the gaps between my posting seem to get longer and longer, sorry!

Everything is a little mad right now, I have just come out of a relationship, I have to say it was the longest relationship I have ever had lasting a grand total of 6 months (just), it's taken me some time to adjust to being free and single again and get my head around are split, but in a way I'm pleased it happened now and not further on down the line. Really it’s the best thing for both of us because I'm busy training with Gus and I think he needs some time to sort his life out before he ends up wasting it!

So right now I'm sitting in a hotel room in Southampton that has been my home for the last week and will be my home for a further week, along with Gus my soon to be fully qualified guide dog. The training is tough in a variety of ways but we are both baring up really well, although Gus appears to have developed a slight cough.

The other people on the class are a little older than me and both have kids my age, but we all get on really well and have laugh about getting scrambled egg in our eye and having to have a bath after breakfast because I have spilt so much of mine all over me! We also have a great laugh about all the mad things our dogs do and great lengthy conversations about spending routines and anal glands over breakfast lunch and dinner.

The trainer is an apprentice GDMI and she is absolutely fabulous we all have great laugh and the atmosphere on class is amazing and very relaxed which makes us all nice and chilled and better dog handlers!

I was supposed to hear about halls by Friday and be told about my room allocation but I have not heard anything yet and apparently my final exam result for BSL should be through but I have not heard about that either so I'm waiting on the post!

some news and other useless information for your reading pleasure

Well first up I absolutely feel it is necessary to declare my extreme hate and disgust at my computer! For no apparent reason it is running slower and slower everyday it seems and I am battling against continuous crashes, freezes and general slowness!

The usual defragment's and disk clean-ups don't seem to be having an impact, I even removed a whole gigabyte of data from it and its still not speeding up, I fear its coming to the end of its life.

I have been trying to do a project using Windows Movie Maker this evening and it has crashed twice already, I have now given up on what I was trying to do after it got to the point where I had to unplug the computer and boot it up again!

So I'm here updating this, for your reading pleasure and about time too! Its probably karma telling me to vent to you all about the crapness of the technological situation!
(if there are any large computer manufactures out there I would like it to be known that all donations are great fully received!)

The huge moan aside the real reason I wanted to write was because I found out on Friday that training with Gus is defiantly going ahead and that we will be training residentially in a very posh hotel!

Its great news, if I had been given the choice I would have always preferred to do residential training, it being my first dog it will give us some really good quality time without Ian or anyone else being a distraction.

So we start training together on the 23rd of June and I am seriously counting down the days, I have a lot of stuff to do before I disappear off for a whole 2 weeks, not to mention another 2 A level exams to sit. I really can't wait to get stuck in to training; I know its going to be hard work but it's going to be worth it!

Apparently there are 3 of us on class with one trainer and the class is taking place in a really nice hotel in Southampton, I will spend 2 weeks residentially there and then another 2 weeks (ish depending how it goes) training at home. It's really good the training is in Southampton because I will be living there in September, it will give me a chance to get to know the place a lot better and hopefully learn some routes.

Bad health

I've been a little poorly of late unfortunately, my last post here was mostly focused on Gus, quite rightly too but I was also at the time battling against one hell of a virus and coming to terms with deterioration.

Well I'm glad to say I am feeling a lot better than I did when that was in full swing but I have had more health related issues.

Due to a change in my glaucoma meds and all the other meds I'm on I had to have an ECG last week, luckily that went OK, and my heart appears normal.

Then I started getting really bad nose bleeds, they were literally happening every day I had 2 on Thursday alone, at which point decided there was nothing else to be done but to go and see a doctor.

Luckily I managed to get an emergency appointment that day and after a few people informing me that I was probably wasting the doctors time as it was likely to be exam stress, I was off.

It turned out I was not wasting the doctors time at all. The virus thing I had really affected the blood vessels in my nose a lot, to the point where I had lots of them cauterised at the doctors on Thursday.

Basically they use a chemical on a swab to burn away at the effected blood vessels, its not nice, my nose felt very crispy and sore for ages afterwords!

Unfortunately I had another nosebleed on Saturday morning so it is yet to be seen whether it has really worked and weather the pain was worth it.

I'm still unfortunately getting over the virus it really hit me hard and I'm still finding it hard to talk sometimes and getting really tiered, probably not helped by having to just keep going through it (I'm mid A levels which does not help). I am feeling a lot better though and will hopefully be back to full fighting fitness soon!