Saturday 29 October 2011

Misconception(s) about hearing-aids

In my last post, I talked about the lack of/poor awareness of many people on the contraption called 'hearing-aids'. For starters, my first foray into the artificial hearing world started with the 'body aid'- a slightly bigger than a matchbox piece of sound amplifier worn in a 'bra' with wires which ends with earmoulds in the ears. That with the brightly colored and mismatched bra always attracted attention (99.9%unwanted). I graduated to the behind-the-ear  (BTE) aids from the time I was 7 and have since remained on them. So no in-the-canal (ITC) aids for me as they cannot help the level of my profound deafness *sad face as that could save me from barrages of questions and unwanted attention* And cochlear implants (CI)? Another story for another day.

So deafness plus hearing-aid=perfect hearing? No! No!! Number one misconception. One should not think that placing a contraption into the ear of a deaf person would dramatically catapult that person into the land of perfect hearing. A friend sent me the following link this morning and I wasn't particularly impressed with the news article. http://www.thenationonlineng.net/2011/index.php/newsextra/24297-hearing-aids-for-lagos-pupils.html
I have a number of questions re: the donations of hearing-aids. Do they honestly think that by donating hearing-aids, they are giving the 'gift of hearing' which would in a twinkle of the eye transform the person back into a hearing person? That statement smacks of outright condescension and ignorance. Giving hearing-aids does NOT automatically make a deaf child hear. There was no mention of hearing rehabilitation. You give someone a hearing-aid and just walk away? I can only presume that these deaf individuals do not have good speech language skills. No mention of speech and language
 therapy. "The ability to learn is diminished". The ability to learn WHAT?? And what else are they going to do about that? I have to say that these
half-measures are not good enough. Charitable acts like these would frustrate not just the donor(s) but also the recipients.

NOT EVERY DEAF PERSON CAN BENEFIT FROM HEARING-AIDS. I agree with my friend who read the article and said that focus should be on the language and cognitive development of the deaf individuals.

Friday 28 October 2011

I admire

...a friend who has USHER syndrome (a medical condition that affects both hearing and sight and can include balance problems). Despite all these, she manages to live an independent life. She has previously used hearing-aids but now has a hearing guide dog. All this in a developed world where she is not treated as a beggar or a society outcast.
She is, in fact, a very talented writer.

Of another sufferer of USHER syndrome who won an award in the UK for being the best employee of the year. Please read her inspiring story:

http://www.yourlocalguardian.co.uk/news/local/croydonnews/9300826.Deaf_and_blind_woman_wins_award/?ref=fbrec

It is heartwarming to see that she achieved her dreams of travelling solo, joining an expedition working at Camp America and achieving a degree in interior design.

I have absolutely no idea how many deaf-blind people there are in NGR. Most whom I have seen are either blind or deaf; not seen any deaf-blind in this country. Going from the situation on ground in this country where people with disabilities (PWD) are treated as the lowest of the low and not supported in the society and also where negative attitudes and misconceptions are very prevalent, I wonder how long it would take for PWD to be accorded recognition and respect for who they are. Not what they are.

Wednesday 26 October 2011

Duh!

For how long would I have to enlighten people that although deaf people look like everyone else, they are different? Let me explain. Earlier on in the day, I went to see a friend who works in a government parastatal.
At the main gate, security guards were somewhat spread out around the periphery of the compound. I greeted vaguely while walking through the main gates. As I was doing so, I saw a particular security guard focusing his eyes on me. I turned back and said hello and thought nothing more about it. Until. I was leaving. My friend escorted me and we encountered that same security guard who was now visibly angry. He said something to the effect that he called me and I refused to walk back to him. I was befuddled because he was not even sitting at the gate entrance. And I had actually looked at him and for all I know, he had made no gesture whatsoever to beckon me to come or get my attention. Most likely, I didn't hear him. FULL STOP. My friend was embarrassed for me but I urged her not to feel that way. I was rather very bothered by the heat so I did not feel embarrassed about it at all. I could have given the security guard a ten second awareness lesson but I was not in the least bit feeling charitable. Just in case you ask, I wore my hearing aids on my left AND right ears!!
Since I have been back here, I have lost count of the number of people who ask me what is on my ears. Arggggh! Twenty years ago, I have had to contend with a trillion and one enquiries about my hearing-aids. I am quite vexed that I would be again facing questions to the nth degree about my hearing-aid that I am seriously contemplating on wearing a t-shirt worded 'Deaf. What I am wearing in my ear helps me to hear; just like eye-glasses help people to see'. And also maybe on my forehead "Deaf but smart"(more suggestions are highly welcome!)
So you see, how very unenlightened, misinformed (and stupid) some people can be. It is highly frustrating to look normal like everyone else and you know, some people just aren't observant or still hold onto outdated notions or rubbish misconceptions on how someone who is deaf should look like.
And I say 'Duh! Duh!!". And public awareness still continues **sigh**

Monday 24 October 2011

Deaf muslim women

...of Northern Nigeria is a group that holds great interest to me. I was due to have a meeting with a female (muslim) sign language interpreter who lives far up north to discuss about proposed projects for this group. So far, we have not been able to coordinate logistics to make that possible.
However, a deaf friend who is currently doing his one year service in Kaduna (a cosmopolitan town situated about 2hours drive north of the federal capital city,Abuja) told me of his recent experiences with this group.
Yesterday, he held a talk on HIV/AIDS with a group of deaf muslim women. A diverse mix; majority of whom are not educated. Many are married. It was very interesting to note that he signed in ASL and there was a sign language interpreter WHO THEN TRANSLATED INTO HAUSA SIGN LANGUAGE! Amazing!! He told me that he discussed topically on gender based violence (GBV)and related issues, why women are vulnerable and prone to rape, certain diseases and the way out. Sharia law which is practised in the north forbids beating of women and children and allows victims to sue their husbands to court. Fortunately none of the participants have been victimised. Advice was given to the women, that in the advent, they experience such that they should go to the appropriate place to lodge their complaints.
Just one photo of the participants was taken and l'll upload that soon.

A big thumbs up to Umar for a job well done. And hopefully much more can be done for this particular group especially in the isolated rural areas.

PS....

Sorry the photo is dark....


Photo credit: Umar Tukur

Love...

...as seen over the weekend. A sign language interpreter friend of mine got married. It was held in the church (the only church that I know of in this country that has a section for the deaf with SLIs on hand to interpret). Quite a large number of deaf people turned up. I went along with my long-time friend and her beau.
My eardrums almost got blasted out because the loudspeakers were right close to the 'special' section. The disadvantage of wearing hearing-aids bore heavily at that time. I refused to feel sorry for myself as the others in the same section appeared to be having a good time! I had fun too as I was chuffed not to be the only person who doesn't close her eyes during prayers! I won't bore you with details of how in the past I had dozed off and embarrassed myself in keeping my eyes closed long after prayers have been offered in the name of being 'politically correct' and how I have been judged and castigated at for refusing to close my eyes or not saying 'Amen' to prayers (that I don't even hear nor understand!).
So at this particular wedding (where 2 other couples got married at the same time), I engaged my people-watching antenna and focused it right at the section that I was sitting at. I sat next to a deaf widow (who has 3 children; her deaf husband having died of kidney failure last year). She graciously acknowledged my note of sympathy. It was neither the time nor place to pester her with further questions. I also noted the presence of a few deaf couples. The atmosphere in the section was cheery and I was inundated with requests to keep up with my interactive sessions (on health and other subjects) with them.
The reception once again showed the contained reasonable behavior of the deaf- no pushing or unnecessary aggressive behavior usually seen with 'normal' people. The drama and dance troupe provided entertainment. Quite an interesting group. I had seen one of the lady dancers earlier on strapped with a baby whom I thought was hers only to be told that it was actually her grandchild! She looked really young.
I also got to meet the widow of the groom's deceased deaf brother. The groom became a sign language interpreter in his honor and happens to be widely popular in the deaf community in this city and the heavy attendance during his wedding was a testament to that fact.
I had a nice time having a 'satter' (read natter) and I am glad to say that I acquired more ASL 'socab' (read vocab) on Saturday. And I have to get busy on continuing my projects as promised.

Here is to wishing my friend, Tim and his lovely bride a really happy journey ahead!!

Wednesday 19 October 2011

You don't need perfect hearing

....to be a brilliant composer. Afterall, Beethoven composed his best music whilst deaf. The story of Lloyd Coleman who is deaf and almost blind and suffers from albinism. A now 19 year old whose work has taken the classical music world by storm.
His mother,Julia recalls that when he was 7 years old, Lloyd announced to her that his dream was to play in the Royal Albert Hall and by now,he had played there three times! He comes from a family that knows nothing about music. What is remarkable about Lloyd is that despite the problems with his hearing and sight, as a toddler, he began to sing even before he learned how to speak. He became fascinated with the piano and at the age of 5, stunned his teacher by drawing 5 perfect stave lines and added notes to form his 1st musical composition. A complete mystery to his mother as no one in his family is musical neither is classical music played in their house.
And guess what, with his hearing-aid he can hear musical notes much clearer than speech! Lloyd achieved grade 8 with distinction in the piano and clarinet quite quickly! In Lloyd's words " The music just came to me like a tap that wouldn't switch off. I noticed in the school orchestra that I could hear music far more clearly than I could hear anything else. The wonderful sound of the flute and the tuba in particular seemed to cut through my deafness"

When Lloyd was 14, he won a scholarship to the prestigious Chetham's School of Music in Manchester. His mother remembers taking him to the station where he couldn't hear the announcements nor see the depature board. She worries that since deaf people are able to lipread and blind people develop a keen sense of hearing and Lloyd has none of that to help him by.

Lloyd says " If anything, my disability has made me even more determined to achieve .I would hate to be known as 'Lloyd Coleman-the blind and deaf composer and musician' because my problems with my hearing and vision have nothing to do with the music I play and my dreams for the future." He currently composes for professional orchestras and music groups across the UK. He had been offered a place to study music at Oxford University.

Very inspiring and interesting!Imagine being able to hear music (even the softest tap of the drum at the very back of the orchestra) and not speech! Waow!! I had to keep a newspaper cutting in my scrapbook.

An extremely rare breed of a deaf who can actually hear music!

Peace!

Saturday 15 October 2011

Deaf families

Back in the early '80's, I had a teacher who had some siblings who were born deaf and had 2 nephews who were brothers and attended my school.  I vividly remember the time that Miss.D took my class ( just me and 2other boys- yeah a very small one!) out to her sister's (and the nephews') house.

What a rich learning experience it was for me. I was very inquisitive to know AND SEE how a whole family:deaf father,deaf mother,deaf sons and deaf daughter live(d). First question to my inquiring mind then was: how would they know that someone was at the door? A doorbell pressed, a few seconds later, a beaming  ,friendly female face wearing two hearing-aids opened the door. I curiously entered with everyone else. A small girl of less than a year old (I am not very sure if she wore a body aid-those horrible hearing-aid that I so detested wearing which had to be worn right on the chest and housed in a 'bra'...yes bra!) sat in her high-chair and wasn't pleased at having her mealtime interrupted.

Whilst sitting down and engaging my hyper-inquisitive brain, I saw some flashing lights on the ceiling. I got to find out that those were alarms. Doorbell alarm. Telephone alarm. Baby alarm. And so on. I was really impressed! How innovative was that! I believe that they were using typetalk- telephone that enabled them to type rather than talk. Television in the UK had already featured subtitles at that time.  This was a deaf family living independently. Mind you, this was in the early '80's. And I remember that her husband came back later in the evening FROM WORK.

This was about 3decades ago and technology is meant to have grown in leaps and bounds since then. So when ignorant people these days say things like deaf people,much less, deaf couples (and families) cannot live 'well' (whatever that means) independently, I usually tut-tut and roll my eyes.

Unfortunately I am presently in a country where stable electricity would put to absolute nought all the vain efforts of deaf people to live independently.  One needs power to have the 'modern' but necessary equipment and live a pretty decent life as a human being.  Call it selfish, I am advocating for stable power mainly on behalf of deaf people not for the general population. Come on now, understand the situation. What do you expect deaf people who rely on lip-reading and signing to do in the night when it is pitch-dark???!!! No, why not imagine yourself being with no sense of hearing and unable to see ( I have often imagined how deaf-blind people cope) in a dark environment? Highly frustrating. Very vexing.  Deaf people are not animals. Create an enabling environment for them and more people will get to smile at the end of the day.

Demand for stable power!

Choosing to...

 ...have a baby who is deaf. I have heard of, read of and seen parents who choose their baby based on sex/gender pre-conception. Well, I have just read a mind-provoking article of a couple who chose to have a deaf child.

In this particular case, the same-sex couple scoured the sperm bank and found a donor who is completely deaf and comes from 5 generations of congenital deafness.  What baffles a lot of doctors is that the parents of the boy refused to let the boy wear a hearing-aid from birth citing reasons:they want him to be confined to sign language just like themselves. And that when he is a teenager, they would let him decide for himself if he wanted to wear a hearing-aid. We know that by that time, hearing-aids wouuld be useless for him anyway!

I personally know a number of people who were born with congenital deafness, marry and go on to have children who were born deaf. I cannot say for sure if they would deliberately go out of their way to have a deaf child. to them, a child is a blessing, however born. Many would say the above-mentioned couple have been unfair to their child.

Here is the link to the story and decide for yourself:

http://www.dailymail.co.uk/health/article-108540/Born-deaf.html

Tuesday 11 October 2011

Apologies...

...for not being consistent recently. I put the blame squarely on the very wonky internet connection *sigh* I have previously enjoyed 24-7 365 right-at-my-fingertips connection.

Some days ago, Planet Earth lost a visionary in Steven Paul "Steve" Jobs. His life story, though atypical, is very inspiring. By inventing innovative products used all over the world!

Here are some quotes of his: "...I don't view wealth as something that validates my intelligence."

"Creativity is just connecting things. When you ask creative people how they did something, they feel a little guilty because they didn't really do it, they just saw something. It seemed obvious to them after a while. That's because they were able to connect experiences they've had and synthesize new things."

“Being the richest man in the cemetery doesn’t matter to me … Going to bed at night saying we’ve done something wonderful… that’s what matters to me.”

“My job is not to be easy on people. My jobs is to take these great people we have and to push them and make them even better.”

“We don’t get a chance to do that many things, and every one should be really excellent. Because this is our life. Life is brief, and then you die, you know? And we’ve all chosen to do this with our lives. So it better be damn good. It better be worth it."

“Almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

“Here’s to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes… the ones who see things differently — they’re not fond of rules… You can quote them, disagree with them, glorify or vilify them, but the only thing you can’t do is ignore them because they change things… they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.”    

  “I’m the only person I know that’s lost a quarter of a billion dollars in one year…. It’s very character-building.”

And a really good one: “Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of other’s opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

So make your life count like his did.

Peace!!

Thursday 6 October 2011

Years ago...

....after I graduated from high school and preparing to get into medical school, I came across two autobiographies (you can tell by now that I enjoy reading them). They appeared to have come my way at the right time. Call it an 'act of Providence' if you will. After graduation, I spent hours on the internet trying to recollect their names, etc. However I can still remember the important bits and hopefully one of you would be kind enough to provide their names.

Here is what I remember:

A blind Korean lady went to Japan to study medicine. I believe that it happened during a period just after the Japanese Imperial rule of Korea. I really do not recall how she got blind. She made a pact with God not to marry or something as I do remember that she fell in love with a Japanese whom she could not marry due to the vow which she made. Not sure whether it was her fellow classmate. One thing however that stood out in the story was how she recounted her experience in the Physiology Laboratory---trying to skin a frog! Remember she is blind! Through many obstacles, she eventually became a doctor and returned to Korea to help her people. And never married.


Another biography which I read was on a South Indian lady who was inflicted with leprosy and had a limb (I think it was her leg) amputated. She studied medicine at what is now called the Christian Medical College at Vellore. Her accounts were quite colourful and insightful particularly about how some Indians during her time (in the 1960's or so) treated other people. She too succeeded in becoming a medical doctor and I do remember that she went to Australia. I cannot remember exactly what for...most possibly for getting a new limb and some rehabilitation. I read those books in 1992 and do forgive me for my lapses in memory!!


Their stories provided some motivation for me during a lot of challenging times that I experienced in medical school (and afterwards). You see, I strongly believe in the concept of mentorship. If I had a mentor then, I wouldn't have made a lot of painful fumbles. I accept that experience may be the best teacher but a lot of deaf people may not have the opportunity to have such an exposure to make a fumble!

I will be back hopefully!

Peace!!!

Wednesday 5 October 2011

Not so bad a day...

Actually today I am SO glad to have broken down some prejudices that some people had towards deaf people. A step forward in the right direction especially as these same people expressed willingness to support deaf people from today onwards. Yay!!! I am hoping for a ripple effect (of better public awareness)  to happen.

I told someone to read up on one of the fascinating people that I admire- Helen Keller. I learnt about Helen Keller when I was about 10years old or so when I read 'The Story Of My Life'. She was born in 1880 and passed away in 1968. She became deaf-blind at 19months old. She learnt by feeling and using signs. Her guardian, Anne Sullivan (previously blind but regained her sight through surgery) taught her through spelling signs and Braille. Miss. Sullivan even followed Helen to college to help her out by tapping out the teachers' words into her hands.

Fascinating facts about Helen Keller: she had an amazing memory. She could put her fingers to someone's lips and understand what the person is saying!!! Remember she being deaf AND blind! First deaf-blind to earn a Bachelor of Arts degree. Prolific writer. Built a house. Travelled the world. Met 'important' people. Campaigner for a lot of causes as well as being a radical socialist.

Miss. Sullivan stayed with Helen Keller for FIFTY (yes 50) years! Helen Keller had some invaluable support from other people as well. Please grab a copy of her book!

What can we all learn from her story? She lived more than 100 years ago and we are yet to see a wonderful case like hers in this country. She had an enabling environment with very supportive people. And she had determination!
Helen Keller at 7
photo from mylot.com

Eleanor Roosevelt (former 1st lady of the USA) and Helen Keller
photo from helenkellerfoundation.org

There we go!

And so for now peace!!

Tuesday 4 October 2011

Watched...

...'Money Order', a Senegalese film made in 1968. It featured subtitles. Not a bad film. A lot of lessons to learn from. It followed the life of a poor man married with 2 wives and has a very generous heart. He received a money order from his nephew who went to Paris to forge out a living. The money order came with a letter specifying the amounts to be shared among certain people. When news gets out in the neighborhood of his 'good fortune', some people try to take advantage of his assumed 'largesse' and things start to become frustrating for him from being unable to cash the money order because he had no ID card. It turned out that he did not even have a birth certificate which was a pre-requisite to getting an ID card. He gets shabby treatment mainly because he was illiterate. He goes to have passport photographs taken and was swindled out of his deposit. Things came to a head when his educated nephew asks him to sign to give him the power of attorney to cash the money order on his behalf. Only for his own nephew to defraud him.

Now why am I telling you this? I cannot help but wonder to what extent that deaf people get exploited. If a poor and illiterate man can be taken advantage of, how much more the deaf who are invariably the poorest of the poor in the society. It is a very harsh world but I think that we all have a duty to make the world a better place for all. And that includes deaf people. They do not need your pity or a paltry handout. Every human being has something valuable to offer to the society; deaf people inclusive.

Permit me to stop here. Peace!!

Sunday 2 October 2011

Holiday mood...

...(or is it mode) still activated.

I'll ask you just a couple of questions that you can ask yourself and keep today's entry extra brief.

If you were wearing the shoes of a deaf person, what important thing would you miss? What would make you feel 'normal'?

That's it for now!

Peace!!

Saturday 1 October 2011

NGR is 51....

A quiet day so far; and at the time of writing, we have had a relatively 'peaceful' day. Please can we spare a thought for those who lost their lives whilst celebrating NGR's 01/10/10. This in a country where adequate compensation is not usually paid out to families whose loved ones died in the 'line of duty'; these particular victims sadly honored the farce of celebrating a 'golden anniversary'.

Maternal mortality is one area that NGR is sadly and definitely lagging behind. Despite having a recent 'achievement' of reducing pregnancy-related complications by 42% between 2008 and 2011 (as recently reported during the United Nations Summit on Non-Communicable Diseases in September 2011), NGR has a very long way to go in achieving its Millennium Development Goal (MDG) 5 by 2015. The current Minister of State for Health said that this 'improvement' was down to better access to skilled birth attendants (SBA) and community health workers ( CHW). So how are deaf women faring? Do we even know what proportion of deaf women of reproductive age is affected? The simple answer is no. I have asked three different people on the status of deaf women in matters related to sexual and reproductive health (SRH) particularly in NGR.

When I first started interactive workshops/sessions with deaf people on HIV/AIDS, I had a one-to-one informal interview with a deaf lady who told me that a lot of deaf women she knew have had abortions (which are illegal) which begs the question if they are being offered information on contraception, condom use and HIV/AIDS in a format that they can understand and accept. And the answer is no! The deaf lady herself told me that she did not have a job...which, I suppose is the case with a lot of others. I however declined from asking her outright if she engages in transactional sex particularly because of the male sign language interpreter (SLI) who was present. (Oh I MUST be proficient in American Sign Language (ASL) ASAP!!)

Few days after that interview, I met a sign language interpreter who gave me a horrific account of a particular deaf teenage girl who was lured away from home to be sex trafficked, had a number of abortions and the SLI was unsure if she was tested for any sexually transmitted infections. Her pitiful story was made horrific by the fact that she was pimped out by a DEAF man!! I was lost for words! Unfortunately she had an extremely weak- possibly non-existent bargaining and negotiating power. I am not sure if she had been able to have counselling as a result of her horrific experiences. I would have loved to find out what kind of relationship she had with her father and mother, whether or not she received any support from her family BEFORE her said experiences, her prior knowledge about sexual matters- informal and formal. I shudder to think if she had been sexually molested even before being trafficked and whether or not her first sexual experience was consensual.

On Wednesday, I had the opportunity to meet a female SLI who lives in Zamfara State which is in the far northern part of Nigeria. We discussed on the situation of deaf women in the North. Because of the isolation due to cultural factors and physical environment, it is very difficult to even estimate the number of deaf women especially of reproductive age. I asked specifically about the proportion of deaf women who was/is a victim of vesico-vaginal fistula (VVF) which is a significant public health problem and a clear sign of the failure of the healthcare delivery system. Unfortunately she does not know.



One does not need to look far because it is very apparent that deaf people particularly women bear the huge brunt of the huge inequities of the poor healthcare system in NGR. What access to reasonable basic healthcare do deaf people even have? Remember that the Minister of State for Health mentioned better access to SBA and CHW as a tool to improve maternal mortality? Do we have even any SBA or CHW who understands sign language? Any sign language intepreter in a clinic or community health post? Most likely not...     

(image from clipartguide.com)
I tell you that this is just the tip of the iceberg.....

This is it for now and do enjoy the rest of the day wherever you all are. Peace!

Just a postscript: I added a photo for a previous entry and a 10.28min videoclip in another previous entry; please have a look! Thank you!