Publicly an Eastenders star talks about her deaf daughter

For those who are not familiar with Eastenders, it is a British soap/tv program.

Thanks again to my friend,S who kindly shared the link.

http://www.dailymail.co.uk/health/article-2106346/EastEnders-star-Rita-Simons-talks-deaf-daughter-Maiya.html

Another case of a set of twins with one who is deaf. I am sure that you can tell that I am fascinated by twins. l learnt some new things. Like enlarged vestibular aqueducts (EVA) which caused the deafness of the actress' daughter. And here is an interesting bit from the article:
And thanks to hearing aids which bolster the little hearing she has in her left ear, she is demonstrating  an aptitude for acting  and singing.

‘Maiya’s ability to speak is incredible, says Rita. ‘Her new thing is to do accents. I heard her playing a game in a perfect Jamaican accent, which she picked up from the TV show Rastamouse.

‘She does a thick Lancashire accent, which is Jane Horrocks from Fifi And The Flowertots. She’s also got a New York accent and some bizarre voice which I think is Romanian – I’m not at all sure where that comes from.

‘It’s incredible when you consider what she’s fighting against. She sings in tune, she’s got great rhythm and she’s a little showgirl.’

Interesting? And some more interesting bits to come from the Daily Mail article:

‘She has balance problems too, which cause her a lot of distress. That’s why she’s constantly on the move, because she only really experiences the problem when she’s standing still.

‘But now we know what we’re dealing with it’s much easier. We do balance exercises, such as standing on one leg, and I’ve bought a bump ball, which she loves being massaged with. It’s a ball covered with bumps and it helps to desensitise her skin.’

Rita and Theo recently decided to learn sign language – a step they resisted initially because they were concerned it would mark Maiya out as different.

‘I don’t want her to miss out on anything because we buried our heads in the sand,’ says Rita. ‘Sign language is a first step. If she needs it I will move her to another school. I’m also looking into the Chicken Shed Theatre company, because I know it does a lot of signing in its productions and that way she will get to integrate with other deaf children.

‘It’s important that Maiya gets to socialise with both the hearing and the deaf communities.’

Cochlear implants – which effectively wire an external microphone directly to the brain, thus providing some hearing – are a possibility, but the procedure is not without controversy and Rita is reluctant to pursue it at the moment.

‘It’s nice to know it’s an option but because Maiya has a degree of hearing, we are cautious. Cochlear implants produce a robotic sound that can be scary for a child who’s been able to hear in the past. And once you bypass the cochlea there’s no going back. It’s irreversible, so if there are any further advances in treatments you can’t take advantage of them.

‘We regard it as a last resort. I have a good friend who is profoundly deaf and her daughter has cochlear implants. I get a lot of advice from her. I know it’s crazy but I still pray for a miracle cure. Of course it’s probably not going to happen, but I’ll never stop dreaming.’

I wouldn't say that it is crazy to pray for a miracle cure...and don't stop dreaming either!

Culled from the dailymail website

What do you call a person...

...who diverts donations/funds meant for deaf pupils for her own personal use?

I had a long but interesting discussion with a passionate deaf young man who has just finished his national service. He served at a 'well-known' deaf school that caters from nursery to primary and junior secondary level. The only bright spots were the children whom he taught. His overall experience in the school was blighted by the selfishness of the proprietoress of the school. Apparently, the school is classified as a NGO and receives huge amounts of money from overseas donors. Which does not in any way reflect in the quality of the teachers employed in the school nor in the quality of equipment in the school.

I was told about a pupil whose parents were unable to pay the school fees and blatantly told to stay away from school. But why solicit for donations from dono and not even use the opportunity to ensure that no child drops out of school? Why charge exorbitant fees when the teachers empeloyed have the barest minimum of qualifications? What is the whole point of opening a deaf school when the deaf children who graduate don't even have a reasonable educational foundation?

Unfortunately for the school owner, she had a young person from the Netherlands doing work experience at the school for 6months. Incidentally, this person's parents donated a large sum to the school. On getting to the school, she was met with sad disappointment when she couldn't see any evidence that donations sent was used for the children's benefits. It would be sad if the pupils suffer because of this woman's greed.

It's so pathetic. An opportunity to impact young people's lives but yet squander it. Well, let's hope that these pupils (and many others from different schools) surmount the challenges of a poor educative start in life and become much greater than this sorry excuse of a woman and her children. You may ask 'Why did I bring her children into this?' And I'll say to you 'She is fully sponsoring her own child's studies to America whilst trampling on other people's children who are struggling to get a decent education.'

Just be mindful of the seeds you sow especially in young children... Life can be funny, very funny!

Nigerian National Youth Award program

I was asked to participate in the training of trainers-national capacity building in the above-mentioned program on Monday and Tuesday and I must say that I had fun.

You see, I met the National Director 'by chance' at a governor's house a couple of weeks ago and she invited me to talk about young people with disabilities. And was I so glad that I went? I did a presentation on meeting the needs of young people with disabilities which was received very favorably!

Let me give you a brief background of NNYA. This association is a member of the Duke of Edinburgh International Award Program. The four main 'tenets' of this program are: service, skills, physical recreation and Adventurous journey. I had never heard of the NNYA until I met the National Director, Dr. Jophia Gupar who is really a committed and versatile professional youth worker. The video clip which was shown to us on the 1st day gave me a better understanding of what the Award Program is about.
There is an International Gold Event(IGE) which takes place every year (or so, I believe) and every participating country sends its awardees for that International Gold Encounter. So the two young people who represented Nigeria attended the training program and shared their experiences at Kenya. The video clip showed young people doing recreational activities which I did when I was younger (and fuelled my interest in extreme sports) like kayak canoeing, abseiling,etc. It also showed activities done in the community and of particular note was the Adopt-a-granny project which I believe took place in India. I was pleasantly surprised to see that some young wheelchair users also participate in the program (in other developed countries). One of the young Nigerian representatives,Chinedu Eluwa told me that he met a deaf representative who came from Scotland to attend the IGE at Kenya- and that he forgot the sign language that the young man taught him :-)
This award program is open to young people from the age of 14 to 24 and is categorised into 3. One of the attendees recommended that the award should be open to those younger than 14. I actually agree with her as it would be better to 'catch them young(er)' seeing how the present youth generation is going these days.
There were about 20 participants; 4 delightful people from Sokoto State in the North of Nigeria and 3 equally delightful people from the South West to mention a few. Quite a number who attended are teachers, a handful are young university students. About 6 people came all the way from the East so there was a 'good mix'. Although I was the only one at the program with some sort of disability, I was accepted. I gave some ground rules on communication which were adhered to with no fuss. I was very impressed!! I went away thinking that I would look for a young deaf person to participate in this program. You can't blame me for thinking that way.
There was a very interesting session on leadership styles. It was given so refreshingly and with humor by Zainab Mohammed. And when I say refreshingly, I mean 'calling a spade a spade' way of sharing.
I went away with quite a number of things; not least of all, a bigger network! I am particularly looking forward to setting up a number of projects for the deaf with the people that I met. I am glad that everyone is going with a reminder about including deaf people and hopefully, that reminder will spread.

*Asaaba!!* *Asaaba!!* (said to give appreciation) to Jophia Gupar and Danjuma Ojei who co-ordinated the training program.

And yes, I'll post some photos shortly!

Still on choices

I am extremely conscious of the fact that many deaf people I meet in Nigeria did/do not even have the privilege to choose whether or not to wear a hearing-aid. I think that this is sad mainly because if they had wanted to wear one, for many it is difficult.

On the other hand, I have met a number of deaf who have by virtue of lack of 'alternatives' have chosen to accept that if they cannot access a means of wearing one, they would accept that. Personally, I think it is not right. Every deaf person should be given the opportunity to CHOOSE- not 'compelled' to accept what's not even available. If that makes sense. Life is all about choices but for people to be empowered, they should be given alternatives and be able to choose.

I'd really like to read your comments!

Choices: Deaf? Inbetweener???

In my last post, a particular comment from a reader whose perspective I shared 100% used the word "inbetweener". I guess that would mean someone who is half between the Deaf world and the hearing world. One part of the brain is here and the other part is over there- not necessarily far away. A connection between the two planes.

On Sunday, someone asked me "Are you trying to be hearing?" What a rude question! And I chose not to answer that. (Mind you, he is deaf and communicates via sign language.) I didn't choose to start wearing hearing-aids when I was a child but eventually I did choose to accept and continue to wear them even though as a child, I had played around with the idea of throwing my hearing-aids away, stamping on them or soaking them in water.

But ultimately it was my choice to wear them. Obviously it led to my questioning myself where I really did belong. I have a pretty good idea and that is- not to be placed in a box. If you want to call me an 'Inbetweener', I'd just shrug. If you want to describe me as deaf, again I'd shrug. I really cannot be bothered but I only wish that deaf and hearing people alike should just accept me for who I am. I am not defined by a particular label; deal with it!I am not about to press pause on my life just so that someone takes the time to decide on what I should be called permanently. I might want to help to complicate other people's perspectives a little by being 'inconsistent'.... I know that I am being sarcastic *shrug*

"Deaf Teens: Hearing World"

My last post "UK residents" refered to the above tv programme which was aired in the UK at the beginning of the month. Please check the comments that followed the post as there is a number of interesting links.

I came across another BBC article related to the tv program: Deaf debate- caught between two worlds. The readers' comments were just as informative. Here is the link:
http://www.bbc.co.uk/news/mobile/magazine-17039270?SThisFB

And the article:

The story of deaf teenagers who chose not to have implants offering the "sensation of sound" generated a huge response. Readers touched by the issue share their perspectives.
Our previous feature focused on two young deaf women, Meghan and Sara, divided over the use of implants.
The story of deaf teenagers who choose not to have implants offering the "sensation of sound"
I became profoundly deaf at the age of seven, in 1952. I wore a hearing aid through much of my life, but sounds & voices were still inaudible. My means of communication was lip reading. I never heard my children's voices.
I had a cochlear implant in 1996, I had no fear at all. My thoughts were just to hear again.
After the implant I can now hear my grandchildren. Isn't science great?
Suzanne Parkinson, Beverley, East Yorkshire
I am deafblind. While I was losing my hearing, I had been forced to wear hearing aids and various hearing devices. Even now, I have to wear a hearing device to hear.
It's nothing like hearing, because all it does is amplify how bad my ears process sound. Syllables sound too blurry to me. I would benefit from deafblind sign language, which is done at chest level so the deafblind can feel it so they can see it with their hands. But I have not found anyone that will teach it to me. They would rather force hearing devices on me.
I consider myself fine and normal as a deafblind person. Why should I feel like an inconvenience to others?
Mina, Kelowna, Canada
I was not born deaf but became deafened after illness at nine to 10 years old. I have never been accepting of my hearing loss and I had a cochlear implant fitted at 15.
It's the best decision I was ever given the privilege to make. It totally transformed my life and helped me cope greatly with the sudden loss of hearing.
It's not for everyone but those who have it truly appreciate and value the sensation of sounds they now have access to. I wish Meghan all the very best with her rehabilitation and studies.
Dee, London
I became deaf 15 years ago and it was extremely traumatic for me. My identity as a hearing person was gone, and initially I just couldn't cope.
After 50 years of hearing culture, I found myself introduced into deaf culture. I spent two years learning to sign and lipread and met some fantastic deaf people. I learned from them that each individual has to decide where they wish to be.
In the same way that they chose to stay with deaf culture, I chose to stay with hearing culture and now have a vibrant soundbridge implant that, although not a cochlear implant, works by activating the bones in the middle ear. I now enjoy around 90% of normal hearing.
By being "in the middle", I learned so many coping strategies from profoundly deaf people and owe them many thanks. A very personal choice that I would not have understood had I not met and discussed the issue with deaf people.
Ken Wardropper, Ilkley
I envy those who are strongly connected to the deaf community. With hearing parents and friends I never was able to explore that side of myself until university. I get hearing aid upgrades every now and then. It is still such a shock when you find a new sound. However, it makes me sad that I never heard it before.
By being an inbetweener of the deaf and hearing communities, I find myself working very hard to hear. I lip read and concentrate to keep up with hearing people. When I finally take the aids out it is very liberating that I can switch off, enjoy the silence and be deaf.
Flo, Maidstone
I cannot help wondering what Sara is going to do with her life. The "Deaf World" she refers to presumably means poeple who use British Sign Language and is a small one.
Estimates vary but the figure normally quoted is 50,000 in the UK. It's not in any sense a world. How will Sara cope outside her family circle where she will meet very few other deaf people?
It's misleading, too, to subsume all people with hearing loss under one heading "deaf". It makes more sense to divide them into three groups - the hard of hearing who are very numerous and who get a lot of benefit from hearing aids; those who become profoundly deaf as adults, like myself; the group Sara belongs to, those deaf from birth.
These three groups have different needs but all have a good chance of participating in society as a whole helped by some marvellous technology like cochlear implants, some commonplace technology like TV subtitles, e-mail SMS texts and textphones and greater awareness of the nature of deafness in the general public.
John Newton, Preston, Lancs
I could relate to many of the comments made in the programme. I belong to neither the deaf or hearing community as i have impaired hearing, i hate my hearing aids because i am just not used to hearing all these sounds. I exist in a sort of no-mans land, belonging nowhere.
Brian Palmer, Birmingham, UK
I have three-year-old twins, born prematurely and consequently one daughter has a hearing loss. As a parent, you are so worried about what the future holds for your child yet this programme was so positive that I'm sure it gave hope to lots of parents in my situation. Good to see that this "invisible" disability is being discussed.
I finished the programme thinking that if my daughter is anything like the intelligent, sassy, confident, happy teenagers in the documentary, then I will be one happy mum!
Jenny Cassie, Ingatestone, UK



Here is one of the participants in this program:

From the BBC website

UK residents!

This is coming rather late. A program called "Deaf teens: hearing world" was aired on BBC3 in the UK at 9pm on Monday 6th February.

It would be nice to have your comments on this.