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.
