Dear Diary..

(Excerpts from a blog diary of abuse on a deaf family).

It seems that the law is against getting things done isn't it ? I'm not one for meetings anymore, I did years of it, and know they are impotent and pointless options
anyway. I am encouraged some judges now support our right to defend ourselves, however we are told this is exceptional still, and if you have more cheeks than two to use them all, and offer an arm and leg too.

Near everyone deaf can tell a story of community abuse, and the futility of pushing for it to be addressed. I try a simplistic approach, IF a law exists for hate-crime and abuse then (A) Why are no cases brought, and (B) No actions taken except the abused has to concede defeat ? By the time we deaf are at our wits end, we are only too glad to take up the offers of rehousing that's the problem, we still need police and 'community leaders' (who the hell they are I don't know), to act IMMEDIATELY to put a stop to it, but no-one cares as long as it isn't them,a nd think we hail from Neptune anyway.

3 cases well documented in my area and covered in recent blogs, and in local media, but not one resulted in any abuser being caught or taken to court. The only empathetic support I had was from a Hindu neighbour, poor sod had his share I suppose.

The amount of complaints the LA's got was considerable from us deaf, then we were suggested as 'over reacting' or even moaners not attempting to get on with people, can we tone the rhetoric down a bit, it doesn't help. You'd get local kids walking straight into your home or garden and trying to walk out with things (!!?), the overall view being deaf are completely stupid and ignorant, and they don't care if you hurt or steal from them, we're all retards.... We had a patio set costing £150 stolen in 2 days, a car just bought, which had side windows smashed in 3. The only car in the street and not on the road in our drive too. The patio set was stolen by our neighbours, who also climbed up our wall and destroyed the CCTV installed on police recommendation, after their kids tried to sever a gas pipe outside, and turn off the mains electricity for fun. I found a number of local children needing psychiatric help.

They had no idea how to relate to people at all, completely feral and in designer clothing too. We had a 5 yr old sent to us (A girl), egged on by a few 10 yr olds who told her "Go and kick that deaf man, he won't do anything..." Indeed we won't of course, as this means the sex offenders register, and potential family destroyed if we react. The power children have is immense. These little humiliations build up and make deaf very resentful and resistant to work within the community, that allows their children to do things like that, but then a number of adults thought it fun as well. It's Sod's law, you are undermined whatever you do.

I lived in a village for 40 years and NEVER had this, I moved to a city and it was at least once or twice a week you would get abuse from someone. My nature is usually I don't take abuse from anyone, deaf or hearing, I had to put up with humiliations no adult should be expected to put up with, mainly because of a disabled son and partner, I would certainly otherwise, have hit out at those who hit me, or certainly taken steps to make the authorities know, as legal advice points out, this is pretty suicidal ! and invites more of the same, Sod's law personified.... The nature of this type of abuse is you accept harassments to a degree, because you have no choices, and it builds up resentments obviously.

Myself and two deaf friends went out and to confront youths to leave us alone, and we all paid the price for that by losing our home and being moved on, and got abuse from their feeble excuse for a parent. It is one law for hearing/youth/community and no law for us. Where I am now is quiet peaceful and well away from any 'community' really, it is not be my ideal choice, I do like people ! but no I don't trust many these days. My child would I am sure want to play with others, it is deemed we are all better off well away from those who call themselves a community, but in reality only accept those like them, with no values.

Deaf find communications hard enough as it is, and for years the police would not listen to deaf people, ALWAYS assuming we 'misunderstood' which suited the abuser down to the ground, they would just insist "We never said/did that.." then the onus is completely on you to prove anything.... this was letting the hearing abusers off the hook and making us look stupid to boot. The odds are stacked against deaf doing anything much. I don't want to admit hearing and community such as it is, is anti-deaf, but the proof is pretty much there, they are, it's institutional.

We were forced to move home twice, was this because I tried to stand my ground thus offering myself up as a viable target ? A number of deaf said at the club,'don't make waves...' they feared publicity. Many deaf still move rather than face up it themselves, the number must be pretty high of deaf people suffering abuse in the community. Cities are presumably the worst because there are more deaf seen. There is no answer at present that will work, thus I challenge 'hate crime' laws are valid or even viable in the deaf case, without a new abuse law we can charge parents and their children with there is no point to it.

March of the Cyborgs...

text of video.

A new implant may help people who can't have success with other devices finally hear again. HealthFirst reporter Leslie Toldo tells us about this new technology for a specific type of deafness.

We are talking about people who can't be helped by cochlear and other implants. This new device retrains the brain to hear. Danny Sanborn wishes he could go back to a time before his world went silent. He suffers from a disease that causes brain tumors. In order to get the tumors out, doctors had to sacrifice his auditory nerve.

"Before I had the tumors, I had hearing. But as soon as they took the tumors out, I didn't have any." A cochlear implant wasn't an option, so surgeons put in an auditory brainstem implant or ABI to restore certain sounds.

"We are bypassing the auditory nerve to directly stimulate the next level of sound processing in the brain," explained Dr. Daniel Lee. Lee says surgeons place 21 electrodes on the bundle of nerves that sit on the brain stem, the lower part of the brain. "The electrodes provide electrical current. It stimulates those nerves that are responsible for continuing a signal of sound to the rest of the brain."

A tiny microphone is positioned by the ear. It picks up sounds from the environment and digitally transmits them to a decoding chip placed under the skin. The chip stimulates the electrodes, allowing the patient to hear sounds. It doesn't restore complete hearing, but Sanborn is now able to hear the phone, an alarm clock and even his best friend.

While the device can restore some hearing, it can't restore a patient's balance that is damaged by the tumors. Up to one-in-25,000 Americans suffers from the condition that causes hearing loss like Sanborn's, called NF2.

Acquired Zeal.... a challenge to the status quo ?

Acquired Deafness, it's a conundrum wrapped in the enigma, in that those who acquire deafness DO re-invent themselves, it is the other point of hammering home still, how the disability took away what they had, we are moving on, we are not however lying down and rolling over to it, is the best way I can put it, so this would appear 'denial' I don't believe it is, no more than I believe 're-invention' is the pat solution.

When you are sitting in a quiet moment, then it hits you again. It's a substitute, most of us would prefer not to need. So the mental battle is there constantly. I doubt there is anyone who has completely gone from non-disablement to a profound one, and just looks on it as a hiccup. I don't want to be 'brave' and a 'hero' overcoming my issue, so some patronising person can pat me on the head. I hurt, a plaster won't do, I want it sorted, don't stand in my way. There is misinformation/images that go out. Moving on is not 'moving away' from what you lost. We are positive, positively annoyed the advances are too slow....Thus having the issues of acquirement of disability, the drive to overcome it is stronger in some, and total capitulation in some others, there is rarely any middle ground.

A sure-fire red flag to acquired, is to say 'get a grip' and 'move on', or as some bright spark said "Get a hobby..." !? I said I have one, it is called campaigning against 'deafness maintenance', (where people totally focus on support to the exclusion of eradications and alleviations), and looking for the cure. I think in the support area, everything gets forgotten as to the bottom line, of putting research and 'cures' on an equal footing. Why isn't 30% of all funding going to cure research ?

I embrace genetics/cochlear implants, the latter is the norm now, and for the former, there may be real inroads one day for many to gain useful hearing again. I cannot for the life of me understand why ANYONE would oppose it, or prevent it happening, so we can all sign at each other ? I think not, that's selfish. The recent survey (Top right of my blog re patients in the health area), showed us less than one third of deaf people wanted sign language used for patient communications, the rest wanted lip-reading, yet lip-reading has been zeroed by sign language plugs, it makes no sense. Another 20% did not want an BSL interpreter and they were profound deaf, only 2% wanted an BSL relay option in the Doctors.

The only puzzle as I see it, is that those who acquire and disablement have NO central representations of any kind ? that's the problem, we aren't uniting to make real change, if we did then by sheer numbers we could change the entire face of deaf awareness and disability, (which seems stuck with the wheelchair image). It got to the point where the wheelchair/Ear logos for some reason, intensely irritated me. As a survey response stated, we aren't just ears, we are people. Acquirment isn't represented, it''s time it was..

The Day I really DID lose the Music

A cautionary tale to those young people, convinced loud music is no danger to people's hearing.

Music made me deaf: (By Phillippa Faulks):

"Twenty-two years ago as I left the house to go to see Motorhead - dubbed the loudest band in the world - my mother's words followed me out of the door: 'You'll ruin your hearing one day!' At the time, I rolled my eyes dramatically, as every self-respecting 19-year-old should, and proceeded to assault my senses with 140 decibels of noise, which I now know is ten decibels above the sound of a jet plane taking off.

The sound levels at the gig were too much for most of the fans; people were leaving in droves, but I stayed on. That night, I left the venue with my ears ringing and it took more than a week for the ringing to diminish. Phillipa Faulks's hearing has improved thanks to digital aids, but she has a warning for teenagers listening to music At the age of 41, my mother's spurned warning now rings as loud as the tinnitus I suffer from, for I have indeed ruined my hearing and wear two relatively innocuous but still definitely very uncool hearing aids.

My penchant for live bands and clubs has caused irreversible damage to my ears, meaning that the sound vibrations normally heard in everyday life are not being passed through the intricate network of nerves to my brain."

The writing on the wall,

"And this is the writing that was inscribed: MENE, MENE, TEKEL, and PARSIN." (Or the AD version)...

"MENE, God has numbered the days of your hearing and brought it to an end."
"TEKEL, you have been weighed in the balances and acceptances but found wanting."
"PERES, your identity is divided and given over to the Deaf and to the mainstream."

No, I haven't found God (or an effective implant), I was reading another blog about 'acceptance', which now an again surface at deaf.read to my continual frustrations and annoyance, because mostly the response is 'get a grip' or something thinly-veiled as that via advice, or the classic, quit the whining and stop being negative is currently popular in some quarters, and a little more politicially correct too I.E. accepting you are deaf, and adopting the ways etc and inevitabilities that go with it, or even making that pilgrimage to the Mecca of Deafhood, on the crossbar of a 'Deaf' cyclist, as the icing on the identity cake so to speak. It is always the impossible journey for AD's.

I think cultural deaf struggle with our 'struggle' personally, they cannot understand why, a person who is undeniably deaf spends a lifetime fighting that concept. I've had many many years to adjust to being deaf (30 near enough), and another 30 of poor hearing and one half-useful ear, with a hearing aid years before that, so one would think going deaf would be nothing 'new' to me. The writing on the wall was spelt out to me with my first consultation by an ENT doctor, "You will be with the hand-wavers, mid 20s or 30s.. have a nice day !"

The fact remains the die is cast at day one, if you are hearing till formative years then it can be viewed downhill from then on mostly, so I spent years waiting for each decibel to vanish, the death of a thousand cuts really. I was not an older person who had suddenly lost hearing this is a misconception, it can happen at many ages, maybe more at older age, but acquiring a deafness isn't down to old age and thus 'inevitable' so you can be viewed as an old eccentric person you have to shout at, which is the usual perception, and someone young people can accept as an comic inevitability, because the truth scares the shit out of them.

I was in my prime and trying to maintain relationships, work and everything else, and losing mostly ! Circumstances like lack of any access to proper communication support, which is the norm for those acquiring deafness still in the UK anyway, there is nothing for these people. You are born deaf or go deaf at very early school age then specializations and support and schools, even a culture of sorts is there, they are NOT There for those acquired deaf a bit later you fend for yourself.

My blog like others who have lost hearing is based on huge discriminations, a lot of soul-searching, bitterness, anger, occasional laughs, (It's not all bad news!), and heartache, combined with a total lack of empathy or support from 'Deaf' or hearing alike. We just do not 'fit in' to the hearing of deaf 'norms' The daily struggle to find your foothold usually means we would take any cure or miracle to get out of it, we have never had a comfort zone, a culture to stay with or anything, no referential point. My last blog (deemed about 'miserable' people, who need to get on with their lives, via one e-mail I had, and about 'desperate losers' from another), was via a valid seminar of 50 acquired deaf people with their families, not one wanted to stay deaf or preferred that, so I appear to be in a fair amount of good company, even if they defy being defined..

Not one mentioned deaf culture or even sign language as a viable option either, they all wanted HEARING again despite the reality there is no way it is going to happen for them, but most wanted to keep distance from deaf culture, or the deaf way as possible, this must I suppose annoy them, but you need to know where AD's are coming from, it's not personal, when the needs must, the devil drives etc....but they won't adopt anything cultural except the 'tools' that enable them as some sort of 'in' again to hearing, and the culture that is that.

I suppose cultural deaf will see that as opposition and disrespect to them in part. Especially if they see us in deaf areas, maybe using sign or even cultural support areas and then giving nothing back to it, maybe altering aspects of it to suit our own needs.

For those who say 'accept' deafness and all it means, I can say, it isn't going to happen for most of us, ever. This doesn't mean funny enough, we cannot move on, or get that grip so many are telling us is the key to it all. I lost my hearing in 12 hours, I just woke up one morning that was it. Even although I had a history of poor hearing, the trauma dictated everything in my life that followed those 12 hours. It's like waking up one day and finding you cannot walk and your legs have gone, and you are an athlete by trade.

The realization you will never do long distance running again, just doesn't really sink in, some may sit in a wheelchair and try a different aspect of the sport, get some semblance of what was,but if HEARING is what you want in to, there is no way in. Acquired deaf seem bent on only desiring to the status quo of hearing, even half a decibel has to be preferred to none at all, it is what drives, most IS illogical, most is our reality. Can we have a moratorium at deaf.read ? no more 'get a grip' blogs for a while ?

I was using search engines to seek out fellow acquired deaf online, and it came back with 'no results for acquired deaf' in near all areas, only coming up with medical reports, surely we represent the majority, so where are they hiding ? Swallowed up by the 'deaf' term ?

Why do you Hate me ?

Recent TV coverage of hate crime in my area by the BBC, but why still no action by the police against these crimes committed against deaf people ? Do we need a a wheelchair, or to be black first ?


My response to the British Police:

It's 2010 so you are finally accepting what happened in 2007/8/9 ? My blog covered three cases of deliberate hate crime against deaf families and people from just ONE deaf club in s.e. wales. It's so common as to be a norm with many deaf here. George Heard deaf-blind forced to move 7 times in 6 years, MM forced to move twice, And recently a deaf single mother whose home was targeted by youths who tried to set fire to her doors, taunted her as stupid, and threw iron bars through her windows, then turned on her 10yr old daughter threatening her.

She has since been re-homed too, which seems to be the classic response, instead of addressing the abuser, you move the abused, and let them torment another vulnerable family instead..

The primary issue as we saw on the TV program, was the police and Local Authorities. The LA although advising us to keep daily records as 'proof' so they can launch a court case, then never acted on them. Later we saw the police dismiss hate crime against us stating "I can't see the problem, it's not as if they got mugged or anything..." what an appalling disregard for what was happening, and even after they admitted being called out 150 times.

Mr Heard had (Still has), 15 YEARS of constant teasing and harassments that culminated in him being attacked for his Disability money, and he ended up in hospital, the second time, the first time youths set a dog on him, the run up to that was repeated smashed windows of his home, name calling in the street, and fires lit outside his front door.. I had 11 years of it, The single deaf mum has had 8 years of it.

As the program showed us, (It is captioned press the 'S' option), daily and constant harassment takes it all out of you, and for some as we read in England, have paid the ultimate price of committing suicide because no-one did a damned thing. For the legal buffs if the person who abuses is BELOW age of consent (Up to 18 in many areas !), then the police will not act or consider bringing a case. They laugh in the face of ASBO's. This is fact here in SE Wales. Since 85% of harassment of the deaf IS done by youths and even children as young as 5, the only solution deaf have been offered is to move home, not a single youth has been brought to court for all of it here.

If deaf react and who wouldn't ? they risk being put on the sex offenders register, these kids can quote the law chapter and verse at you. We asked for statistics from SS, the police, and the LA, they refused to give them,how many disabled/deaf have been rehoused, reported abuse ? Via socializing the deaf club, we hear of many many deaf moving home time after time, when we ask why they say 'kids', 'Bad area' etc...

Happy New year NOT to these morons, and the police need to be ashamed to call themselves upholders of the law.

MM


Further reference 1

Further reference 2

I hope for a miracle every day..

By kind permission of Hearing Matters At a recent seminar attened by 50 acquired deaf people.... what they said about acquiring deafness.. we are here we always have been.

On being deafened:

(1) I feel that I’m so much more than just somebody with a hearing loss or somebody that wears hearing aids. I’ll never accept it. Whether that will change in the future I don’t know, but the way I feel at the moment I just wish that I could have my hearing back.

(2) I hope for the miracle every day of hearing again.

On family life:

(1)My son is very quietly spoken and communication as he grew up was a bit superficial. We couldn’t sit down and have long conversations.

(2) It’s quite difficult for children to cope with adults who can’t hear.

(3) Just to have hearing, perfect hearing for five minutes, have all this noise gone, and just sit and listen to the silence and maybe some birds singing and hearing my husband call my name and hearing the girls laugh. Yes.

On the impact of Hearing Concern/Link:

Some of the people who were interviewed had been on an HCL intensive rehabilitation programme, and they felt it had been a very positive experience for them and their families . . . here is what they said...

(1)I could now see a future in my life which I had given up on completely. They gave me my life back.

(2) It just brought us together. There were a lot of us together as couples. He was able to meet other deafened people. I was introduced to deafened people and learnt to
speak with them.

On the NHS:

He [the audiologist] saw me as a problem to be solved, so I did get very good hearing aids and he would spend a lot of time with me. [But] he saw me as a pair of ears, nothing else, not a person.

I say to the chiropodist, would you speak slowly and quietly. Oh yes, all right, they say. They speak louder and more quickly. I think they get a bit afraid or on edge.

On communication:

Mostly what I’ve done is get people to write things down. It’s much quicker and saves time.

That is what I miss, the repartee. I do not get any repartee now. Little interesting bits of conversation.

You only get what people want to say to you, so you don’t hear the interesting bits, so life has got no atmosphere. That is what I feel.

On being a partner:

Q: Do you feel you’ve come out of it stronger together?
A: Much stronger, yes, although we always were very strong but it has brought us closer together.

It is good that you are interviewing some of the hearing partners as well. Because sometimes you feel that you are the forgotten minority. It is a disaster that affects the whole relationship and I think it is good that some people have that experience recorded as well.

Acquired deaf, saying it how it is....

Do the Deaf dream of a Jeanie ?

Here is Jean Gross England's first 'Communication Champion'. Her job (Should she decide to do it properly), will be to encourage English parents to communicate to their own children, after reports many children in schools had poor language and communication skills, because parents stuff them in front of a TV and don't interact with them. with more affluent parents spending time talking and reading to their kids while the rest presumably are couch potatoes when not drunk or on drugs.... So that's hearing kids sorted, how about deaf ones ? The acquired deaf desperately need someone to speak up for them.....This article was reported on the BBC today...


'BEER', 'CAT', 'CAR' ARE KIDS' FIRST WORDS

Hearing their child's first word is a proud moment for parents - even if that utterance is a demand for beer.

"Dadda" and "Mamma" still top the list of first words. But some of the more unusual entries are beer, gadget, Hoover and even t*ts-up.

The surprising findings of a YouGov poll, published today, also reveal that nearly one child in six has problems learning to talk.

Boys (22%) are more likely than girls (13%) to experience difficulties with talking and understanding speech and are twice as likely to have significant problems.

The survey polled 1,015 parents of children under eight. It found that only 54% of the children who had experienced trouble talking received treatment from a speech therapist. Others got help from nursery or playgroup staff, but nearly a quarter did not receive any assistance.

Education expert Jean Gross, who becomes England's first Communication Champion for Children today, said: "Our ability to communicate is fundamental and underpins everything else. Learning to talk is one of the most important skills a child can master.

"The proportion of children who have difficulty learning to talk and understand speech is high, particularly among boys.

"It is essential that all children get the help they need from skilled professionals."

The survey also found that one child in four in the South West had difficulties with speech, compared with 10% in the East Midlands. And that while most children say their first word aged between 10 and 11 months, four per cent have still not spoken by the time they are three.

More criticisms of English parents.... Time to turn off the TV...

Another Waste of Deaf Study funding...

Where do they find these people, and they need a survey to tell us this ? From an Journal published in Bristol England, 'home' of the study of British 'Deaf'....(good to know deaf studies are not completely a waste of time..). DOH !

What they noticed.....

Structured personal interviews concerning the social and vocational aspects of acquired hearing loss were carried out with 105 people aged between 24 and 56 years. The data included participants' experiences of hospital referral and the level of information provision.

It was found that despite the majority being referred for ENT and audiological consultation immediately by their doctors, few of them received advice regarding the best strategy for adjustment, or for communication.

Difficulties in communication in the family environment existed as distance from speaker or numbers of people increased. There was also a decline in contact with relatives and neighbours for a significant minority.

Deafness created a two-way problem, equally placing a strain on hearing members of the family. Irritation and frustration was reported, as was the feeling on loneliness. As the majority suffered only a mild hearing loss, the findings gave cause for concern and confirmed the need for an effective rehabilitation and advice structure.

They could have just logged in to my blog and saved the time.....

Breakthrough !

It's taken 15 or more years and megabytes of online criticism and deaf oppositions, but the RNID have finally agreed to capitulate to requests to deliver access for deaf people to the RNID, regardless if paying members or not, this is after lengthy BBC and online campaigns and blogs that have been locked in a negative battle against the RNID for some time. To lessen the bitter battle and slanging match with the UK's largest purported charity representing the deaf in the United Kingdom. The New Year's media release from J Ballard their C.E.O, posted by e-mail to me today reads as follows......

"In response to the growing issue of a small, but vociferous, sector of deaf people who feel the RNID is operating an exclusion policy. I will start by refuting this entirely, however, and in order to stop the arguing and continued negativity offered to the RNID, we will offer to re-open the online forum we had, which was removed a few years ago, because of issues that were created before I became CEO at the RNID. This is no way indicates or suggests, the RNID were responsible for it closing or, that it was a deliberate or calculated act to exclude deaf people from raising issues with us, there was too much personal abuse, and the RNID felt there was no other option, and could not afford to pay for pro-active 24/7 moderation...

There has been a history of contention between the deaf signing/cultural deaf area and the RNID, which we understand started when a deaf CEO was voted out of office by our membership, via a democratic and majority vote. We are unable to go in to any lengthy explanation regarding that issue as there are legal implications involved agreed by both parties, we are NOT refusing to give out information, we are not allowed to by law.

Regarding requests for open 'surgeries' direct to senior executives of the RNID, and indeed to all area offices, is an issue we intend to bring up at the next trustee meeting, it will then be down to individual senior staff to do this, and if time permits them to moderate such access, the RNID cannot fund such a system itself..... Initially, and if this occurs, there will NOT be sign access as the RNID cannot afford to do this. We know we promised this 5 years ago, but financial circumstances and the recent bank issues combined with the downturn in funding, still makes this not possible.

Online bloggers like 'MM' and a few others, suggest as we represent 1 in 7 persons deaf or hard of hearing in the UK, then so should we open our doors to them all access - wise too, and allow then voting rights. We already offer we feel access to anyone via an e-mail or telephone, a letter, or they can call in any of our offices, voting rights however, as described, are not written in our constitution except to those who are paying members. A change of our charitable remit would be needed. If present RNID members call for this we would of course consider their request, but the trustees have the ultimate decision to take,and if it is a viable proposition.

We hope initially that throwing open again the forum which has led to many deaf people increasingly angry at the RNID, is a step forward to better relations between ourselves and the deaf sector."

J.Ballard/B.Lamb
RNID.