Thursday, 11 July 2019

It's probably fake news, but the reality is gene editing is here to stay.  46 deaf-causing genes are said to exist we are told, they haven't found a treatment system for any of them as we are aware, but research is ongoing.  As for those who claim the research or implementation of gene editing is opposed, that is untrue, the UK did it this week with NHS patients.  It's here already.  If they can cure my deafness I'd be front of queue for it.  The people who really decide are us, or parents.  

This highlights a factual comment ATR made recently in that area that supports the Deaf and against 'cures', are being overruled on two counts, by research elsewhere in the world with fewer qualms about it, and demand from those of us who see deafness and loss as a crippling disability.  So those who are against gene research are against us too.  No more 'blaming' medicos for it, it is our WISH to see it addressed.  Those who dare happy hearing nothing your choice.

"Fran├žoise Baylis is a bioethicist who serves on a World Health Organization committee that is developing standards for editing the human genome. 

A Russian molecular biologist says he plans to edit human embryos to prevent deafness — something Canadian bioethicist Fran├žoise Baylis says defies the international scientific community. Denis Rebrikov, who heads the Kulakov National Medical Research Center for Obstetrics, Gynecology and Perinatology in Moscow, told the New Scientist he has recruited five couples with genetic deafness who wish to conceive a child who can hear. 

Rebrikov has announced the plans despite the widespread backlash against a Chinese scientist who, last year, announced he'd edited the genes of twin girls. Baylis, a Dalhousie University ethics professor who serves on a World Health Organization committee that is developing standards for editing the human genome, spoke with As It Happens guest host Robyn Bresnahan about Rebrikov's plan."


Disabled and living in Fear....

Living with a disability in the UK today means living in a state of perpetual fear, feeling unheard, patronised and at times like a burden – and it can take a huge toll on your mental health. I was born with a genetic condition called Osteogenesis Impefecta (Brittle Bones) – a condition that won’t get better with age, and I am a full-time wheelchair user. 

When I think about my own battles with anxiety and depression and what induces them, the principle triggers for my depression and anxiety come from the fear of losing my independence, not being able to work and financially support myself, socialise and feel part of a community. Of course, I need to take ownership for my own wellbeing and there are measures I can take to limit my anxiety but I need to know that those around me understand and listen. 

Especially as my independence still relies heavily on the external support I receive, namely financial support from the government. The support the disabled community receives comes from the government via local authorities and it’s been this way since 1970s. Initially it came in the form of Attendance Allowance and Mobility Allowance, intended to help people with mobility issues get around as public transport was completely inaccessible. Then in 1992, Attendance and Mobility Allowance was integrated into the Disability Living Allowance (DLA) that had two additional lower rates of benefit, determined by your specific support needs. My parents fought tooth and nail to ensure that I would receive support throughout my life and after a lengthy battle, I was awarded indefinite DLA. However, in 2012 the government changed the goal post again and introduced Personal Independent Payments (PIP). This meant that anyone receiving DLA, even if they had been awarded it indefinitely, would now be re-assessed. In a nut shell I, and thousands like me, now have to prove that I am disabled enough to receive further help.

Article SOURCE

ATR response:

Perhaps if she didn't 'accept' the deaf are different to disabled people it would help and challenge that deaf community to fess up on their part in the mess that is welfare.  Pandering to culture is an opt out of challenging what it means in terms of disability.  The deaf took no part in the campaigns FOR a Disability/equality Act, they were primary users of it after.  The leg work and street marches the disabled did.   We know the UK government wants to end welfare benefits and free healthcare altogether if that means some have to die so be it.  We keep seeing disability areas including e.g. the deaf one, insisting they AREN'T disabled, and this tends to undermine those who are, and also have additional mental health and hearing loss issues, really struggling to claim welfare benefits for their support.   

The HoH area which constitutes the majority with hearing loss, lost 60% of claims they put in, the 'Deaf' weren't concerned they convinced the system their needs were greater, quite a feat considering they aren't 'disabled' at all.  They failed to include the issues of deaf children suffering 40% with mental health illness.  That was a 'disability' the 'hearing' caused apparently. Campaigns have stopped highlighting the need in favour of raising the profile.

The irony, is the area aforementioned costs the HIGHEST A2W benefit in the UK to support, (Up to £1,000 per week), and they just had a raise. Some seem to be 'benefitting' a bit more than others.  Inequality is rife in the disability areas too.  Disabled need a unity of direction re welfare that isn't messed about with by disabled (or deaf), people arguing about labels, ID's, 'medical' and 'social' models, and what actually constitutes being disabled. If deaf people are not disabled then not in need of disability benefits surely?  

Could we not accept if a deaf person insists his/her issue is 'socially induced' then they don't get the financial benefit but use the equality, and anti-discrimination laws instead?  then leave the welfare and care support (financial and otherwise) for those suffering as a result of hearing loss, that is, after all, a true ID of social and medical modelling isn't it?  They cannot have it both ways?  They already get sign support free and transport too.  Shortages are a different issue.

Awareness has failed miserably as we all ramble on about petty cultural politics and discriminations, even who is REALLY REALLY deaf and who isn't. based on social grounds, not medical ones.   To add to the confusion medicos claim these deaf ARE amidst the most disabled in the wider community, hence the acceptance of the huge costs to support they need.  Yesterday the Prime Minister was asked in Parliament about the DWP's genocidal assault on the disabled and why they aren't allowed to claim legal aid to defend themselves? Is justice just for those with the money to pay?  she ignored the question altogether.   'Next question?'

Meanwhile, the DWP is picking them off one by one. Even the terminally ill have to justify why they are still alive.  The entire disability sector consists of more than enough power to force politicians to stop what is going on, instead, they argue who 'caused' the disability, who hasn't one, and who is 'prolonging' it, excluding own part in that, just blaming everyone else.  Do you see it being sorted? No, nor do I!

Food Banks not an answer?

Image result for food banks
The alarming growth of food banks in the western and 'civilised' world appears to debunk the myth of an educated, humane or wealthy set up that cares about its vulnerable in the population.  It is said the USA one of the wealthiest countries in the world with huge resources is at the top of neglecting its poor and vulnerable as is the UK, by denying them jobs, dignity, good health, support or food to eat.  

Mostly they assuage this by insisting 'We send billions supporting those people in the 3rd world', hardly justification starving your own to support someone starving elsewhere is it?  The logic is obscene.  The only answer is not more free food but us all addressing the reason people cannot afford to eat properly. These worthy efforts have a disturbing way of becoming an acceptable norm, and once that happens that's it. All charities have a nasty habit of making themselves indispensable and self-perpetuating, thus allowing the government to opt out of its responsibilities, catch 22. 

Short term needs being met is fine but should never be viewed as a long term set up. This has led to national charities who wanted to 'help' in some way to become corporate establishments and part of an alternative poorly funded supportive system lasting years and years, of course, it' becomes THE system then, as the state opts out entirely of its moral and ethical responsibilities.    if a charity thus fails, then, they take the blame too.   It doesn't stop the state taxing us all to buggery just the same 'to meet those needs', does it? and leaving actual funding and support to the vagaries of the begging bowl, despite it too now being a corporate set up as charities pay others to ask for the money for a percentage, so even misery has to make a profit.....

Can I hear with hearing Aids?

HoH and Deaf. Healthcare work options.

Deafness is a Gift.

Loves his label doesn't he?  I'm not informing him when my birthday is, I'd hate to see what presents he sends me! A recent blog/article extolling the virtues of being deaf and adding a completely incorrect statistic there are not 8.3m we don't really know how many in the UK have hearing loss issues or to what degree it means they need support with it. A census said less than 15,000 deaf were in England, less than 2,600 in  Wales.  Scotland and Ireland are lower figures too, the problem is all these 'Deaf' groups are claiming hearing loss and deafness allied with culture and sign, are the same thing and the degree of exaggerated statistics they are claiming is now completely out of hand.  In short, they lie about them.  They do it because nobody knows or keeps a record.

Overall with hearing LOSS the assumption by the system is near 10m or 1 in 6/7 of the population with hearing loss and is a guestimate, what counts is how many need help with it, as the system then recognises it as a need when they seek support.  E.G. UK Social services/welfare depts suggest the 'Deaf' figures are completely wrong as they don't have those numbers seeking help from them, its 100s, not 1,000s or millions.  His deafness type puts this individual in a minority, even within the deaf world as congenital deafness is still, fortunately, a rarity.  Even the dubious British Deaf Association would never attempt to use an 8.3m stat!  Although like this deaf poster often use the stat to improve the contention/discrimination factor for them, but HoH are NOT, 'Deaf' people.

As well as misinforming readers about deafness and loss.  This man isn't alone in putting out stuff like this so we must counter it.  It all undermines support and awareness of people with deafness and loss. It appears to be some 'knee-jerk' reaction down to issues of his past, but it doesn't excuse misinformation he includes.  While it is a tirade aimed at hearing mostly he misrepresents us to justify it, please stop doing that.  Frankly ATR does not support responses like these at the hearing, or the system mainstream, it just means they will continue to turn their back on us, or see us as a 'problem' and you don't break down ignorance by being offensive to make your point.  We don't want martyrs, we want educators.

We need the mainstream on, not offside if we want inclusion.  For his information, the type of response he got to his congenital deafness is no different to what those with acquired deafness or hard of hearing get, we prefer to educate not attack as most is down to ignorance of our issue.  If you put people on the defensive you just re-isolate your cause.  He talks about HoH but promotes congenital deafness and sign/culture, will the real 'deafie' please stand up?  Basically, most of the 10m alleged 'deaf' DON'T support the 'D' in the UK, it is discriminatory, non-applicable, politically motivated, and unhelpful. it distorts awareness.  He protests too much and about the wrong things and adds wrong justification too. How is 'congenital deafness' from birth,  now 'hearing loss' or even 'Hard of Hearing'?  That's the trouble with a rant, you lose perspective.

What he Wrote:

"During my school years I was called ‘dopey,’ ‘cloth ears’ and ‘slow’. This wasn’t by bullies but by teachers who failed to recognise my lack of hearing. Being called these names was humiliating and something I didn’t want to talk about, so I swept it under the carpet. I regularly misunderstood situations and instructions and had to learn to survive. I would assess a scenario visually, piece together what was happening, using lip-reading to add context. It’s how I had got by all my life and, as I have congenital deafness, I just thought that was the way everyone else heard, too. 

I used to call my good ear my index ear as a child, in the same way you have an index finger. I was a bright kid but ended up in remedial groups because my deafness wasn’t identified until I was 13. There is a long-standing correlation between deafness and assumed stupidity among educators throughout history, as evidenced in the common usage of the phrase ‘deaf and dumb’, until quite recently. Hearing loss can be a very alienating and isolating experience. There are 8.3million of us who are hard of hearing in the UK. We inhabit a strange hinterland; not hearing, but not as deaf as the 50,000 capital ‘D’ or culturally deaf people who use British Sign Language.