Expecting Parents.

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With each pregnancy I have experienced (and there have been five of them in total) I have people watched with great interest in the waiting rooms at two different maternity hospitals that I had been referred to, in the past. There have always been a good handful of nervous expectant couples,

Living in such a diverse community, there have also been those who cannot speak English. They just happen to be of another nationality. Myself, I just happen to be deaf. I have however, never seen a translator being provided, for any of these foreign speaking families. They always seemed to be happy enough.

A while ago I noticed a post on social media, by the BBC’s ‘See Hear’ about one of their upcoming programmes, concerning a couple.

The woman is hearing whilst her partner is legally deafblind. They are expecting their first baby but they are unhappy…. The NHS is repeatedly asking the mum-to-be to interpret, for her partner, at HER appointments.

The NHS say that since SHE is the patient, they do not need to accommodate / provide an interpreter for HER partner. Which I think is fair enough, having thought back on all my pregnancies and rifling through my hospital memories. The patients have always come first, regardless of who they happen to be. The dads,, mums, siblings, families and visitors come second, once again, regardless of who they happen to be.. For they are not the patient, it is not their well being, pregnancies or bodies being treated and/or monitored and if they need(ed) support, what is stopping them from arranging their own? Especially if they are otherwise, unsatisfied.

The NHS’s primary concern and priorities, are their actual patients.

Granted, there will be times when a loved one is being operated on and their anxious partners, who may happen to be deaf or a foreign speaking national, will not be able to fully understand, what is being said to them by the professionals. Then, the care system should assist in providing an interpreter or a translator to ensure their patient gets the full care and treatment by their loved ones, as this would mean a full recovery.

Fortunately, I have no complaints at all with each and every NHS experience I have encountered, despite being profoundly deaf myself.

I am more conscious of seriously ill premature babies being born abroad, to parents who are having to pay for incubators, medicine, tests out of their own pockets and on borrowed money. The same people who are having to live hand to mouth, daily. I do not see them complaining one iota for they, do not know how to take things for granted.

~ SJ (Sara Jae)

 

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The Fight To Become The Next London Mayor.

Just because Sadiq Khan signed in a video of his, pledging to help deaf people in London, it does not automatically mean we, the deaf community, should vote for him to become our next London Mayor (2016).

Keep your wits about you. 🙂

There are many different needs and abilities to each specific member of the deaf community which is extremely diverse. One can raise further awareness personally by emailing him on sadiq@labour.org.uk

However, it is always nice to see more and more people making the effort to be all inclusive.

~ SJ (Sara Jae)

The Next Hurdle

Today I had to pay the eye hospital another visit. This time around was a lot more stressful in the sense that I had to rely on the public for their kindness, patience and assistance.

I was given eye drops on the spot so a test could be undertaken. This meant my eyesight would be temporarily blurry albeit for a good few hours only. I tried not to go into panic mode as my thoughts returned to the journey home, by foot, train and bus. How would I manage all that? One pondered.

Unfortunately, patients’ names are called out at this particular hospital so I could not help but daydream, gazing at the floor, unable to focus on anyone around me. I found myself trying to listen perhaps to compensate for the temporary sight loss. Each time a name was called, I paused to see if it sounded similar to mine until one name when I thought, “Ooh, was that my name? It could have been but perhaps not because the receptionist hadn’t come to alert me.” Doubts crept in as intuition told me that was my name so I looked up to appease my nerves and saw the nurse who had earlier, done the eye drops, approaching me and with her hand, waved for me to come. I explained to her that I could not focus on anyone’s lips. She understood. The doctor DID call my name. (Go me!)

While my hearing aids enable me to hear so much more – not being able to focus, I could not really hear as well which proves to me just how much we hear with our eyes – it became clearer to me just how unfair playing the deaf card can be. I never used to question why deaf people thought they were entitled to pay only half of their TV license fees, like those with blindness do. “It’s only fair,” they would state… ‘Tis not fair at all for blindness alone causes one to be so much more dependent, stressed and isolated than deafness can. Our eyesight is extremely precious, hearing less so. However, when it is combined?

When those who happen to be deaf, try their luck in taking advantage of any privileges that is usually taken for granted, they run the risk of offending those so much more entitled. For sure, there are those who rely on solely sign language and for some it can be a matter of life or death but for most, not really, because they can at least understand the nation’s language, be it written or spoken.

The eye doctor, who made every effort possible to speak extremely clearly, put me at ease very quickly. I could see enough to gauge, and what to do next all the while making mental notes of how it felt being unable to see, so clearly, for your information.

For example, I noticed how much more comfortable it felt to look down, it put less pressure on my eyes and relatively, my headache – no or less visible noise for my eyes to try to focus on. I also wondered if I was standing and holding myself, gazing to the side as a blind person usually do.

Eventually, I was free to go except the prospect of the journey home filled me with utter dread.

How was I going to cross the roads safely? How was I going to know which destination on the train it would be or which line the train was? Alternatively, which stop it was? How this and that, I could not answer.

hurdles

The first hurdle was taking a few tentative steps outside but I had to be brave and just go for it. I expected to see a green man at a crossing to indicate when it was safe to cross but it was not a man, just a green blob.

I had no choice but to retrace my steps home – from memory with an abundance of patience.

The next hurdle was checking I had the right (train) platform home. I decided I could only follow the colour of the tube lines I needed and then when I needed direction as to take which platform, I took consciously longer to look at the shape of the words, indicating its destination. Did the size and outline of their word match the word I had, in my mind? If it did not, it had to be the wrong platform. I had to triple check with myself before I had the confidence that I was going in the right direction.

The next hurdle was to be sure of the next train’s destination, or was it to be a train meant for elsewhere? Under so much stress, I reminded myself to look at the word once again; did the size and outline match? Yes it did – quick double check, yes off I jumped onto the tube. How would I know when it was my stop? This was not my usual or local train so from memory I recalled the stops on my way there, counting on my fingers – putting each finger down for each stop. When the time came to change lines, I underwent the same motions not once but twice more. On the last tube change, I could start to relax being in familiar territory.

The next hurdle was in catching the bus home. The people traffic by then had worn me out; having been on tenterhooks the whole journey, hoping people would be mindful and patient with someone who may have looked extremely lost.

As I stood at the bus stop, leaning against it, I could see in the distance a bus but it was stationary. At least it is coming, or so I thought. I realised I was still waiting… The bus had not yet arrived yet it was still there, in the distance. Perhaps something serious had happened. Still, I was kept waiting. What could the matter be? I then wondered if… the bus was actually a bus or a town house. Of course, that explained it!

Finally, a bus turned up except no one could get on it. By this time, I put my instinct into people power and followed them to the next bus behind. I was completely exhausted, mentally.

There were several text messages for me, on my mobile; I tried to remain calm, not being able to read them to understand if my kids urgently needed me. I had to ignore the texts… of which, my daughter read for me once I got home and responded to.

Of course as with last time, I later indulged in some sensuous chocolates but that is no longer important as I know there will be many more trips to endure to and from the eye hospital yet I do not mind because I anticipate that with each insightful experience, one will become wiser for it.

My respect is well and truly reserved for those who genuinely need attention, not those who want attention.

Let us move on from campaigning for additional deaf rights, more deaf awareness when we should be supporting those campaigning for more deafblind rights and awareness since it would benefit every single one of us.  If it were not for any of the colour designated posts, i.e. green man, different colour tube lines, I would not have managed to get home – independently. Who then, deserves our consideration and assistance, the most?

~ SJ (Sara Jae)

Seeing Is Believing

blurred-vision

We always seem to learn facts from those amongst us who may be deafblind but never experience it for ourselves, in order to be able to understand and relate in full. Therefore, here is a particular albeit very new experience of mine because, seeing is believing…

Without delving into the medical side of things for privacy reasons, I am once again unbelievably grateful for the NHS today. Without them, every one of us would have a very different story to tell. Having been born deaf into a deaf family, I was also exposed to people who happened to be deafblind which meant I never really took my eyesight (or anything else!) for granted. I know from not just my own experience but also others too, just how incredibly scary it can be, realising and seeing how quickly an organ thus relatively a life can deteriorate. It can be as sudden as a blink of an eye.

I had been getting a red eye now and again that was becoming bothersome but since it was not infected, my GP suggested I pay a visit to the A&E department at an Eye Hospital.

The moment I walked into the reception area, I sensed just how chaotic it was but patience prevailed and I made sure the receptionist understood I would not be able to hear when my name was being called. He quickly reassured me and said he will make sure they know and if necessary, he would call me too. As I went to find a seat, there seemed to be only one row of seats facing towards the communal area where names were being called out. All the other rows of seats were facing the other way, the wrong way in my opinion. There was also some elaborate hand waving going on, all dedicated to yours truly which I admired and appreciated. After all, their efforts made my heart smile.

My diagnosis after personally researching upon returning home made me stop in my tracks. I had assumed it was something almost trivial yet in the end, without the appropriate medication or specialist care the quality of my vision (in one eye) would have deteriorated. As it is right now – at this precise moment in time, I hope, the “insult” will be contained and eliminated, the quality of vision improving with the help of prescribed medicine and patience. For it is not easy at all, not being able to see or hear very well simultaneously. I now have a much more detailed understanding of what deafblind people may personally feel, and experience. It is extremely exhausting, not being able to lip-read, let alone reading, despite feeling even more vulnerable when outside, exposed to all the elements and the vast lack of awareness in sensory loss be it sight and/or hearing.

Overall, the whole experience is proving to be a good challenge.

People sadly forget just how precious life can be so please, do look after yourselves exceptionally well and enjoy life to the max. For the rest of today, I am going to slumber, cherishing each moment with my children alongside mugs of hot chocolate and some extremely sensual chocolate cake. Hmmm mmmm indeed! Mamma mia 🙂

Carpe Diem – Every day x.

~ SJ (Sara Jae)

A related post; The Next Hurdle

The Suffering of Deaf Children In Gaza

There are many untold stories and here is one of them……

“The idea of making cartoons was started after the war, after being inspired to help the many traumatised children within Gaza. They suffered from psychological and behavioural problems during the war, as with all children living in a state of armed violence. Their idea behind the cartoons is to show the world what the children living in the Gaza Strip are suffering from and what they have witnessed during the war.

Deaf children specifically were in a state of isolation during the war because they were unable to go to school or come to the Atfaluna Society for Deaf Children for someone to explain what was happening around them as not all families were able to use sign language to explain the reason behind the brutality. They would only see is their families leaving their homes; mothers barely had time to pack some things and take her children and leave, sometimes even forgetting some of them.

They also suffered from power outages and were unable to communicate with anyone, as they had to do so only in sign language, and although the parents were there, it was difficult to communicate in the dark, thus leaving the children isolated.

The biggest fear felt by the deaf children in Gaza is the fear of losing their arms and hands, as that it their only means of communication, so that scared them the most. They had always hoped if something were to happen to them, that they would be martyred immediately rather than lose their arms, because if they did, they would have no way of communicating with the outside world.

One form of psychological rehabilitation used by Atfaluna, for both all the children and the employees, was the use of drawings, which were later turned into cartoons for the deaf to express themselves. We are happy that these cartoons were very popular and received attention from all across the world.

Video by MEMO’s Mohammed Asad.”

Source.

Hearing Hands.

Once upon a time, Muharrem, who has a degree of hearing loss went about his daily routine as usual. Except, he was then pleasantly surprised to see strangers all around him using sign language, which made his day pass by easier.

When he finds out why and how, his reaction is priceless and most likely this heart-warming stunt will make you shed a tear or two, also.

All because a world without barriers is everyone’s dream.

This ad was made by Samsung, Turkey in order to promote their video call centre – for people with hearing problems.

The Deaf Community – An Important Message.

Many years ago, deaf people were not considered to be in a position where they could be a proactive member of society. For at times, families would hide their deaf child away because they felt ashamed simply because they had a child who happened to be deaf or even worse, were not diagnosed as deaf but for want of a better word, dumb. Some of these people were mistreated, abandoned and abused.

Looking around us today, it is a completely different picture. It is not yet perfect but the deaf now have a community which has come a long way and I am using the word “community” and not “culture” because the word “culture” is rather complex and divisive. When one uses the word “culture”, it is in reference to customs, habits, language and many other factors that belong to a particular group of people who are different to others.

Sign language alone should not form the basis for a “deaf culture” because deaf people are born into a culture that already exists – if you are born into the British culture then by default you are British. Bearing in mind, that sign language is derived and based on our mother tongue. Both deaf and hearing people as well as monkeys and apes can use this form of visual language. On the other hand, it would be wrong of us to assume anyone who may be hard of hearing, deafened, deaf or deafblind automatically know sign language. To presume that everyone deaf can sign is not correct and it is misinforming our society of today.

A baby who has been born deaf into a British hearing family, growing up with the family’s customs and ways, can he suddenly deny his family’s culture and refer to himself as deaf only? Insinuating, that because his family is hearing, they do not belong to a “deaf culture” despite having tried their very best to provide their child with an enriching and balanced upbringing, encouraging him to speak, sign and integrate with his peers regardless of whether they were deaf or hearing.

It would be extremely hard for me to separate myself from the people that taught me everything I know and in the process hurting them in return by secluding myself to another particular culture, especially one that we find difficult to define.

To put it simply, we have habits (no, not those long brown gowns!) which is interpreted by some as “deaf culture”, or more appropriately termed as learned behaviour. On the contrary, we can learn it, be aware of it but it does not mean we have to adopt it.

Sadly, there are deaf parents who hope their child will be born deaf because they believe they belong to a deaf culture only and by having a hearing child, they would break that familiarity to what they only know. This is an extreme stance to have and it is one that is potentially damaging.

By simply saying to hearing people “If you do not make the effort to communicate with me then I will separate myself from you all together” is so not the route to take; the more they see of you, the more they are forced to understand you. I say forced because hearing people have the option to learn at least some basic sign language like finger spelling which should at least be made part of today’s school curriculum.

One (i.e. Paddy Ladd and his Deafhood book) could argue that residential schools for the deaf is the main continuity for “deaf culture” being learned – perhaps forty years ago but not today. Because forty years or so ago, the differences in technology, segregation and concentration then and now could not be more evident unless influenced and taught otherwise by the older generations.

As stated on NDCS website, “90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person”. The other 10% would probably grow up with sign language as their first language in cases where the deaf parents also sign rather than having to wait until they have contact with other deaf children, which is normally the experience of the other 90% at school. Approximately, nowadays, 90% of those deaf children born severely or profoundly deaf are likely to be implanted before their second birthday – More than 60% of the children at Mary Hare School now have implants.

Where hearing aids and implants are concerned, people have feared deaf identities and the linguistics will be lost, “I am still deaf” one may remark. Of course, you will still be deaf because your hearing aid(s) or implants will not be in use 24/7 and you will have grown up as a deaf person, lip-reading, signing (if able to). The deaf majority at present, thankfully, now sees a CI as a superior hearing aid, which actually has very little bearing on “deaf culture” despite a tiny percentage that are anti-CI and vehemently trying to turn people against CI’s by using an excuse along the lines of “social cleansing”.

There is a term albeit rarely used, which is the “hearing brain”. I understand this to mean when someone loses hearing later in life after growing up living life to the max as a hearing person possibly could, has been fortunate to receive a cochlear implant, only to characteristically revert to whom they grew up as. Do we or rather, should we put that down to “hearing culture”? When it is whom they have learnt and happen to be, within themselves and society just as we are who we are and that others have taught us who to become.

My fear of seeing people belonging to one culture and denying everything, everyone else around them is that there is a danger of separating ourselves from the mainstream culture we have to live in and share.

In being exclusive, this will undo all the hard work that has been achieved before us, by the many generations of deaf people. They are the ones who struggled and fought hard to finally be accepted within the mainstream society today. If anything, we should continue to strive albeit much harder to keep this sense of inclusion and integration developing but there is a cycle, especially where learnt behaviour is concerned, reoccurring in many senses that people need to break out of this habit, especially if they want to advance further as an inclusive and diverse community.

There is a still a lot that has to be done, in terms of educating society that we are all equals and just as capable but not by creating and realising any further divisive ideas. With positivity, forward thinking and unity, this can be achieved by the deaf community but only if the will is there.

~ SJ (Sara Jae)