A hidden disability is just as important as a visible one

It is a fact of life that people born able bodied may not have a guarantee of a life free from disability. It is estimated that 83% of people who have a disability acquire it after birth. Many of these disabilities come under the category of hidden disability. This means a disability that is not immediately obvious to the casual observer.

I was born disabled and I have cerebral palsy which is obvious due to my wheelchair, and eyesight difficulties as I wear glasses. 

However, many people don't realise the severity of my eyesight: I have a squint in both eyes, astigmatism, nystagmus  eye movements meaning my eyes move involuntarily from side to side .



I also have what's called hemianopsia . Wkipedia defines this as follows: hemianopia , or hemianopsia, is a type of anopsia (defect in the visual field) where the decreased vision or blindness takes place in half the visual field of one or both eyes. In most cases, the visual field loss respects the vertical midline (straight down the middle of each eye) . The most common causes of this damage include stroke, brain tumor, and trauma.  In my case. This would have been everything that happened to cause my disabilities . This was premature birth, lack of oxygen to the brain, and a subsequent brain hemorrhage on both sides of my brain.

The effects of all this are  I can't focus my eyes easily, and can only see things if they are directly in front of my eyes, not above , below or at the sides (I have no peripheral vision ) and also what is known as tunnel vision.  Yes, I wear  glasses, but their lenses are of a very high prescription, and I have to wear them all day every day, taking them off only when I go to bed. 

 All this in fact, was enough for me to register as a blind person.

Ok, that's just my eyes. I was also born with hydrocephalus which happened as a result of a grade 4
brain hemorrhage (the same that caused my other disabilities) . Hydrocephalus is defined as follows by Shine Charity: 

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain. A watery fluid, known as cerebrospinal fluid or CSF, is produced constantly inside each of the four spaces or ventricles inside the brain: between 400 and 600mls is produced each day. Here are more facts about it. 

The CSF normally flows through narrow pathways from one ventricle to the next, then out over the outside of the brain and down the spinal cord. The CSF is absorbed into the bloodstream, and the amount and pressure are normally kept within a fairly narrow range.

If the drainage at CSF is prevented at any point, the fluid accumulates in the ventricles inside the brain, causing them to swell and resulting in compression of the surrounding tissue. In babies and infants, the head will enlarge. In older children and adults, the head size cannot increase as the bones

which form the skull are completely joined together.

Hydrocephalus  is caused by the inability of CSF to drain away into the bloodstream. There are many reasons why this can happen. Hydrocephalus can be congenital or acquired.

Congenital Hydrocephalus

This means that hydrocephalus is present at birth. 

The causes are acqueduct stenosis, Cysts within the brain

Spina Bifida

Most babies born with spina bifida have hydrocephalus. In addition to the lesion in the spinal cord, there are abnormalities in the structure of certain parts of the brain which develop before birth. This prevents proper drainage of the CSF. The increase in pressure due to this can also compress the abnormal parts of the brain 

Genetics

(in very rare circumstances )

Maternal infections

Acquired Hydrocephalus

This occurs after birth and causes will include:

Brain Haemorrhage. This is how my hydrocephalus was caused , as well as due to my prematurity.  

Other forms of brain haemorrhage, including those occurring in adults ( ̧stroke) can result in this type of posthaemorrhagic hydrocephalus.

Tumours

Meningitis

Prematurity. 

Hydrocephalus is not always operated on, but when it is (as in my case) it is controlled using a shunt which is inserted surgically. 

 A shunt is simply a device which diverts the accumulated CSF around the obstructed pathways and returns it to the bloodstream.

It consists of a system of tubes with a valve to control the rate of drainage and prevent backflow. It is inserted surgically so that the upper end is in a ventricle of the brain and the lower end leads either into the heart (ventriculoatrial) or into the abdomen (ventriculoperitoneal). I have a ventriculoperitoneal (VP) shunt. 

In most cases, the shunts are intended to stay in place for life, although alterations or revisions might become necessary from time to time. Occasionally, as with any implant, there can be mechanical failure. Also, it is important to be aware that problems can occur with blockage or infection of the shunt.

These vary enormously between individuals. 

Possible signs of acute shunt blockage may include:

vomiting, headache, dizziness, photophobia (sensitivity to light) and other visual disturbances, drowsiness and fits.

Possible signs of chronic shunt blockage may include:

fatigue, general malaise, visual problems, behavioural changes, decline in academic performance, being just onot right» from the carer»s point of view.

In my case, I had alot of vomiting, dizziness  and headaches . Most of my problems with my shunt occurred between the ages of birth and 11 years old. The shunt I have now has been in place 20 years without me getting ill or needing an operation, although I do easily get headaches. This is especially so if the weather is very cloudy and humid and in my case is also due to postures (eg when lying down). I cannot tilt my head back far without discomfort either, which makes things like drinking or getting my hair washed difficult and uncomfy . 

If a shunt blockage is suspected, medical advice should be sought from your neurosurgical unit within four hours of acute symptoms starting. In shunt infections, symptoms vary with the route of drainage. In ventriculoperitoneal shunts, the symptoms often resemble those of a blockage.

This is because the shunt becomes infected and the lower catheter is very often then sealed off by tissue.

There may be accompanying fever and abdominal pain or discomfort or redness over the shunt site. 

Shunt blockage  which are causing illness usually require an operation to replace or adjust the affected part of the shunt. Shunt infections are usually treated by removal of the whole shunt and a course of antibiotics before insertion of a new system. Modern approaches to antibiotic therapy mean that such treatment can be expected to succeed, in most cases.

Some children and adults with hydrocephalus will develop seizures.

The effects of hydrocephalus are varied. 

There can be learning difficulties associated with hydrocephalus such as problems with concentration, reasoning and shortterm memory. Hydrocephalus can also result in subtle effects, giving problems with coordination, motivation, organisational skills and language. Physical effects such as visual problems, or early puberty in children, may also occur. 

Aside from having a hidden disability, the  social impact can sometimes be more difficult for the individual concerned, as the assumption is often “You don’t look like you're disabled so you must be OK”.  Implications can be dismissed as unimportant or not of relevance, and this can have a  serious effect on the confidence and well being of the individual concerned. 

This happened to me a lot , and I spent a lot of my life not being very confident at all (especially my infant and primary school years) until my confidence improved as I began to realise that in order to get somewhere in life, I had to learn to become more confident in myself and trust myself more I'm pleased to say that this self - analysis worked, and I'm a much more confident person today than  I was all those years ago. I never lacked motivation as I love life. 

I have difficulties in coordination because of my combined disabilities of cerebral palsy, hydrocephalus and my eyesight problems.  I think of myself as being quite organised, but I cannot organize paperwork due to difficulty in literally physically handling the paper , and organisation of ideas was an initial problem until I got used to  using  bullet points, spider diagrams or lists for my work or everyday life. I got advice from teachers on this and took it from there, inventing my own organizational techniques.

  This works for me and I still do the same today . I've also always kept a diary or journal which I find helps. My memory is quite good ( I was often assumed to have memory problems). No one is perfect though and we all forget things from time to time. 

Hands-on Subjects  like Maths, technology and science were a problem and it was often assumed I couldn't learn them. In fact, I could, I just needed more physical help in these classes, and for someone to have the patience to explain things to me as many times as necessary. I still need this today, as I'll sometimes forget things after someone has just told me . Hydrocephalus causes short term memory problems. It's not that I don't listen , pay attention or show a lack of interest in what goes on. 

This leads me on to say that because of my disabilities, I have spatial awareness problems which means that I have difficulty deciphering information to do with distance speed and depth in the world around me in relation to my own body position and movement. This affects my ability to think of and see objects as 3 - dimensional  , and it is also linked to coordination difficulties. This is often, and has been mistakenly 

interpreted by others as clumsiness.

Here are some of the hidden disabilities that are common in our society:

Asthma

More than three million adults and children have asthma in the UK. The incidence of asthma has doubled over the years. 

Transplants

The number of organ transplants eg heart liver and kidney is likely to increase with advances in technology and surgical techniques. Patients have to be cared for after a transplant - their resistance to disease is decreased and they require ongoing medication, nearly always including immuno-suppressants.

Diseases of the heart/circulatory system

More than 160,000 people in the UK die of heart disease each year. Although there has been a continual decline in the number of people with heart disease over the last five years, and the incidence is likely to continue to decrease, the number of people with cardiovascular disabilities looking for work is likely to increase due to greater effectiveness of treatment of heart disease. In addition people are surviving longer, and with less disability after having strokes.

Mental disabilities/learning difficulties/psychological illnesses

Among the causes of learning difficulties are chromosomal abnormalities such as Down’s Syndrome. Although pre-natal screening will reduce the number of babies born with Down’s Syndrome, there is likely to be an increase in the survival of more premature/low birth weight babies who will have disabilities.

The number of people with psychological illnesses will also increase in the future - there will be more cases of anxiety and depression, caused by the stresses of today’s lifestyle, for example insecurity of work, pressure of work etc.

It is estimated that 1 in 4 adults in the UK experience mental illness at some point in their lives. Many people seek medical advice and treatment and their health improves as a result. However there are many whose mental illness continues to cause them difficulties regardless of treatment received because of the attitude of others due to fear or ignorance. This is one reason why the DDA includes people who have experienced disability in the past.

Epilepsy

One in 200 people in the UK has epilepsy. The number of people experiencing epileptic seizures has not changed significantly over the years but epilepsy is now better controlled with increasingly sophisticated drugs and overall there is an improvement in prospects for a person with epilepsy.

Accidents/post-trauma cases

Although there is a reduction in occupational and household accidents, road traffic accidents are increasing and there is a greater survival rate from head and limb injuries, leading to an increased number of post-trauma people in society. It is estimated that 11,000 people each year sustain severe head injuries, this equates to roughly 30 people per day.

Diabetes

The number of people with diabetes is increasing. There is a genetic predisposition to diabetes which is not reducing; better treatment means that people with diabetes survive longer and have more children; and in addition, many diabetes-related illnesses are being prevented, thereby increasing general health.

Arthritis and rheumatism

An estimated 8 million people have arthritis in the UK. The prevalence of arthritis is expected to increase proportionately with the number of elderly people in the population. The increase in the number of joint replacements in young people will also lead to an increase in the number of people with arthritis.

Back pain

Back pain is a major cause of illness and time off work - 60 per cent of the population will experience back pain annually and 30 per cent have chronic back pain. However, in some cases scans are now able to pinpoint the causes of back pain more accurately and enable better treatment, so disabilities caused by back pain are expected to reduce.

Multiple sclerosis

This condition does not usually develop quickly and many people have long spells without showing symptoms. Many continue with a perfectly normal working life, with little or no loss of work capacity. However, people with MS may tire rather more quickly than other people, in more serious cases, the sense of balance, co-ordination, dexterity, walking and climbing may be affected to varying degrees.

Dyslexia

The British Dyslexia Association estimates that 4 per cent of the UK population is severely dyslexic. Other sources estimate that one in 10 of the population has some form of dyslexia, which manifests itself in difficulty with spelling or memory. It is a complex neurological condition and there is no standard manifestation of dyslexia. Difficulties can range from severe problems with literacy to less obvious difficulties, such as short-term memory loss, sequencing and organising information.

Hidden disabilities should be treated with the same respect and consideration as other types of disability. Assumptions should never be made as to the severity of the implications of any disability regardless of whether these are obvious or otherwise.

Very often our perception and judgment of a person is based on what is visible or apparent to us - what we can readily notice. But what about the things that are invisible to us? How do we access information, or even remember that there is information about a person that we don't notice?

 I read about Grace , a woman who had a traumatic brain injury when she was sixteen years old. She was in a car accident, an all too common occurrence. An accident occurs, the head hits a part of the car and internal damage to the brain results, ranging from mild to severe. Grace shows no outside cues of brain damage. There are no visible cues of her head injury. Grace's walking, vision and physical reflexes look "normal."

Grace has encountered years of difficulty attending school and college. Through the expenditure of a lot of effort and diligence Grace has managed to graduate from college and even graduate school, but it has been very difficult for her. She has required a lot of assistance to organize and work with information. Grace's brain was damaged in the car accident. Her ability to hold information was altered by the impact.

The biggest difficulty that Grace has faced is not the effort it takes to organize information, however. It has been in convincing people that she had a problem at all. People look at Grace and assume she is fine and then react to her difficulty as if she is being lazy or choosing to be obstinate. Teachers' judgments of Grace have been based on assumptions made from Grace's physical appearance. A few stopped to enquire what was true for Grace. Many did not. It was frustrating enough to have to struggle with the school work. Imagine having to struggle with negative judgments at the same time.

Hidden disabilities are everywhere. Our culture teaches us that appearance is everything - the ultimate measure of a person - but appearances can be quite deceiving. We can look perfectly "presentable" and be managing a complex problem. There are many issues I manage on a day to day basis and some I discover as I attempt to do things.

Brain injuries are only some of the causes of hidden disabilities, of course. Someone with an orthopedic injury may not be able to lift heavy objects or move fast. Some people have visual acuity problems and lose peripheral vision. The list goes on and on. What is important is that we remember that someone we know may have a hidden disability.

What can we do about our tendency to assume that what we perceive from the appearance of a person is what is "true" about them? We can first realize that there may be more to know. We can stop a minute and ask ourselves - is this all there is about this person? Then, if we see someone we work with, live with or care about having difficulty, we can take a breath, slow down and enquire what is happening. We don't need to make a judgment one way or another based on what we think we see. Perhaps the person is simply tired that day but perhaps there is a deeper, more longer lasting problem, a hidden disability. We cannot know unless we ask.

We can use open-ended questions without assumptions embedded in them. Rather than saying, "Why are you being lazy or obstinate or refusing to do what I asked you to do (you get the idea)?" we can ask, "What do you need to accomplish this task?" We might learn a lot more than we think.

Invisible disabilities are disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all.

Invisible disabilities can also include chronic illnesses and conditions, such as renal failure, color blindness, diabetes, epilepsy, asthma, chronic fatigue syndrome, fibromyalgia and sleep disorders if those ailments significantly impair normal activities of daily living. Other invisible disabilities include, but are not limited to AIDS/HIV, Schizophrenia, Developmental Co-ordination Disorder (DCD)/ Dyspraxia, ADHD, depression, anxiety disorders, cancer, allergies, and autism. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.

So far in this blog post,  I have described what hidden disabilities  I have and some of their effects on me. 

Sometimes , people find that much worse than the disability itself is the way society reacts to them as a disabled person. Many people who do not know the " ins and outs " of a person's  disability(ies) wrongly assume that " if you can't see it it's not there. " 

In my experience, I have had many people making comments and judgements throughout my life about on my disabilities , but especially the hidden disabilities.

 My most recent experience of this was when I was talking to social services and the lady I was talking to said "looking at you, I wouldn't have thought that your eyesight is very bad".this took me aback , although I don't always expect people to understand my disabilities and needs  straight off, ( and never have done). 

However, what I do expect is for them to be more sensitive and professional in the way that they enquire about my disability and/ or needs. In stark contrast to this, my advocate was very diplomatic and sensitive when he asked about my hydrocephalus and he told me that even though his wife worked with some people with hydrocephalus, he didn't want to ask her just in case he seemed ignorant so he said he preferred to ask me as I have it. Very often, (but not always), when people enquire or enquired in the past about my disabilities they always start of a conversation with " I hope you don't mind me asking but..." or "sorry to ask this but....". 

In fact I do not mind them asking at all as long as they ask in a nice way. People asking about my disabilities or being curious about them has never made me feel uncomfortable, as from an early age I accepted them as part of me and my identity. That is not to say that my disabilities are all of me , taking over my personality traits and what makes me me.  They do form a big part of me,and the way I am and I've always seen that way.I have never felt embarrassed by my disabilities, as some people might . 

I have also had my fair share of people mimicking my disabilities in front of me and also the misfortune of possible employers whispering about my disability when they are sitting right in front of me interviewing me, instead of using the interview time more wisely, or being mature and asking me straight out about my disabilities if they had any queries.I have always believed in being open and honest at all times about my disabilities and depending on how the person I was talking to reacted to what I was telling them about my disabilities and me, then I would make my judgement as to whether it was worth taking their reaction into account or not. Needless to say, on this occasion I acted as professionally as I could and steered the conversation in the way I wanted, which was to focus on the interview. Deep down however, I had already made my decision about whether I wanted the job or not as they were also talking about me and my disability being a big liability to them and their company and me being expensive.they told me that they would call me after the interview (which they didn't) so I called them and they avoided the subject and then when I said okay I guess you don't want me because of my disabilities they were silent so I then felt very glad that I hadn't got the job.

Another assumption I find people make is that

 They automatically assume that I have an intellectual disability and talk to me slower or try and simplify what they're saying, often making a big show of asking me if I've understood. What they don't realise is that despite my disabilities I have a degree and can speak Spanish almost fluently. When I tell them this , they are incredibly surprised, as if everyone who has a disability is completely unable to understand or learn . When I was at school and in other situations where I would be with people, sometimes they would finish sentences for me, when in fact the way they finish the sentence was not what I planned to say at all when I was in education, my hydrocephalus and the headaches resulting from it would mean that I would not be able to concentrate on my school or university me being admitted to hospital for shunt surgery work . Teachers often ashamed I was not interested in studying and that I was lazy. The truth is that I have always loved learning, but the too late intensity of my headaches made it so difficult to concentrate and my vision blurred because of this as well so I couldn't concentrate and literally all I could think about was the intensity of the headache and how bad I felt. When when I would take days off school because of tiredness as due to my CP and the effort my muscles have to make every day, I came home from school or university exhausted, or during the years I have most problems with my shunt (up to age 11 ), teachers would get irritated about my absence from school and totally ignore, misunderstand or misinterpret the real reason I was off school. I was named by some students as liking"  bunking off school". I actually couldn't wait to get back as I really hated hospitals. Little did they know that a delay in me being admitted to hospital for tests or operated on for hydrocephalus could have ended my life once the symptoms of my hydrocephalus started.

The  assumptions made about my visual disability is that my glasses automatically correct my vision to 100% as the lenses do not look thick to people . In fact, my lenses are thick but the factory that makes them has a technique where they can flatten the lenses despite them being high prescription and make them fit into a large number of different frames. As I have always been very fashion – conscious, I have tried to choose nice looking frames, as I figure that if someone is going to look stare point or make some remark about me, I would prefer them to make it a nice remark or compliment about my glasses and not a nasty one about my vision or disabilities. The same goes with my wheelchair.

The moral all of this I think is that disability, whether it is obvious or hidden, should be equally respected and understood and likewise the person that has it. If people are not willing to understand the disability (ies) and accept the person that has them,  then they should not make comments in the first place.

I found this picture of a person wearing a T-shirt and think the message is simple but effective.   

Thank you for reading this blog post which I hope you find an informative and interesting insight into hidden disabilities , and my personal experience of them . If anything is to be learnt from all this, it's that  the moral is to not judge disabled people in the first place. 

I hope that in the future, society will accept disabled people better whether their disability is 

Invisible / hidden or not.