Ami Kal: My non-visual struggles

Having multiple medical conditions has been a struggle for many years. Having to live with invisible disabilities has proven to be very difficult and distressing.

I’m hoping by telling my story and journey I will be able to help others experiencing the same prejudice not feel isolated.

I’ll be sharing all my disorders and disability in the near future starting with my hearing loss.

In 1983 age 2 as a result of Meningitis, I experienced a complete loss of hearing on my left side and a moderate hearing loss across all frequencies on my right side.

With a unilateral hearing loss, I experience severe difficulties locating the source of direction of the and hearing speech when there is background noise. This means that I can only hear about 30-35% of the conversation.

As a child I had to wear hearing aids adjusted to suit my hearing loss in my right ear, which was extremely embarrassing as you can imagine how cruel children can be.

Growing up didn’t change much other than the comments became more than just a child being cruel to me. Now being in my late thirties I’ve realised that people just don’t seem to understand how hard it is to be deaf or hard of hearing.

Hearing aids do not restore normal hearing unfortunately. They make sounds louder and clearer so they can be heard more comfortably, but will not make all sounds perfectly clear.

Background noise is a massive problem, as hearing aids tend to amplify everything. Although digital hearing aids are better equipped to deal with background noise, no hearing aid can cut it out entirely.

I find it easier to follow speech if I can see the person’s face and I use visual clues and lip-reading to  supplement my hearing.

Lip-reading requires a lot of skill and concentration as many words look similar on the lips.

Having to watch the lip shapes, gestures and facial movements of the person talking is exhausting.

Not all words are easy to lip-read and subsequently sounds can be misinterpreted, which in turn can lead to the incorrect comprehension of the word.

Our society has failed to highlight the daily struggles a deaf person has to face to be able to perform the simplest of tasks.

I’m unable to follow simple communication if people talk quickly, mumble, have facial hair, cover their lips whilst they talk; this problem is obviously exaggerated when conversing on the telephone without sight of the other person.

Lip-reading cannot make up for the hearing that has been lost. It is not possible for a person to consistently understand everything that is said by lip-reading alone.

In 2014, I had a bone conduction implant on my left side to help with my ability to cope with my deteriorating hearing on my right side. This is a bone conduction implant that transmits sound waves via the cranial bone directly to the inner ear, where they are perceived as natural sounds.

However the implant was removed in 2015 because it resulted in many complications and was unsuccessful. I experienced constant neuropathic pain on my left side, facial palsy and loss of feeling, weakness and I had to use a zimmerframe to aid me with my walking. I had to learn how to use stairs, walk and much more.

Following the implant, I experienced the onset of constant intrusive Tinnitus and feelings of imbalance  and dizziness. I have since been diagnosed with positional dizziness and left-sided vestibular hypofunction disorder.

All this has made my life a living hell, causing me dizziness, poor balance especially with sudden head or eye movements, difficulty walking – particularly outdoors – in the dark or in crowded places, blurred vision,especially when turning my head quickly and feeling of nausea.

The combination of head pain (hemicrenia continua) and the intrusive Tinnitus can severely disturb my sleep,which can result in extreme fatigue.

The removal of the implant has left a smallish/medium hole in my head which is covered only by skin /tissue. I’m therefore very sensitive and this side of my head feels constantly  vulnerable.

As a result of the above I was diagnosed with Post Traumatic Stress Disorder (PTSD) and I have been on long term sick since 26th of June 2014.

I was also diagnosed with Obsessive compulsive Disorder (OCD) in 2015.

I’m unable to travel on public transport, particularly during peak and busy hours, due to my hearing condition and vestibular hypofunction.

I experience difficulty hearing and concentrating in situations where there is any interference from background noise. How can one function in the outside world, when everyone looks at you and assumes that you are hearing?

I’ve been pushed in supermarkets with trolleys because I couldn’t hear the person, called names, insulted for faking and pretending that I was physically and mentally impaired.

I often say to myself it’s not my fault if I’m unable to screen out ambient and unwanted noise, why am I being punished by society for having difficulties distinguishing speech in the presence of background noise?

When you’re deaf you’re more easily distracted and find it harder to concentrate on tasks, which 9 out of 10 times increases the levels of stress and tiredness.

One of the main issues I face daily is that I’m deaf with speech and people tend to find it impossible to comprehend, I’m also criticised for speaking loudly as I cannot hear the tone of my voice.

It’s  basically a constant battle from all angles. I feel I’m at a substantial disadvantage (compared with a non-disabled person).

It is often difficult for a person without hearing loss to completely understand the daily barriers that deaf and hard of hearing people face. My ability to hear at any given time depends on a number of factors such as the acoustics, the level and type of background noise, the speaker’s voice tone or accent, the volume and frequency of the words used, as well as how I’m feeling at that time.

I rely on communication skills, such as lip-reading, in order to maximise my chances of understanding what is being said. People with hearing loss subsequently have to work twice as hard to follow a conversation which can be very tiring. Stress and tiredness have a profound effect on my ability to process and hear sounds.

It is scary to know that I’m in constant danger, not aware of people approaching me from behind or my side. I cannot tell everyone out there to make sure they have my attention or visually attract my attention before speaking to me.

How can I ask people to stand 3-6 feet from me as this will help me see the lip patterns more  clearly and also to remember not to turn your face or cover your mouth when speaking.

Glare from windows can place a person’s face in shadow which can make facial features and lips difficult to see.

During any conversation (especially in groups) I just cannot focus.

Speaking clearly at a moderate pace, without raising the voice too much or over emphasising speech seems to be impossible for non hard of hearing people to perform. Using natural facial expressions, gesture and body language and also be prepared to repeat sentences or rephrase them seems to be too much to ask for.

Due to my type of hearing loss, I find it much harder to locate the source or direction of where the sound is coming from and as a result I can be slower to identify who is speaking and may miss what is said or be unsure of the subject raised.

In addition, the effectiveness of a hearing aid decreases the further a person speaking is from me, the clarity of speech becomes worse and lip patterns become harder to follow. Any additional background noise, such as air conditioning or poor room acoustics can make processing speech much harder.

It’s harder for me to to take notes or look at visual material because I need to concentrate on lip-reading and processing of speech. Some days I just feel like laying down and now moving because I know what I have to face out there.

Hearing aids are not as sophisticated as the human ear and cannot filter out unwanted background noise. Hearing aid users often find they cannot use the telephone effectively, because unlike the human ear, hearing aids will not discriminate which sound sounds they want to listen to and will emulsify all sounds equally.

I urge all companies without any exceptions to consider Deaf awareness training to provide an insight into the everyday life issues faced by deaf person/hearing impaired.

Together we need to break those barriers and create a positive environment that is accessible to everyone. We also need to explain the Equality Act and different types of deafness and hearing loss.

Do they know that one in six people in the UK has a hearing loss?

Please help me make the world a better place for all disabled people to feel safe, equal and wanted.

Ami is a deaf blogger, based in London, trying to maximise deaf awareness, none visual disabilities. “I struggle daily hence my blog title! I’m all for disability rights and equality. I strongly believe in things have to change for us disabled people going forward.”