Now and again I look at the UK's only deafened site (The NADP), and there is nothing at all there for deafened people, just a constant advertisement for every other charity but theirs, the sole thing they seem to do is set up surveys no-one participates in.
As a deafened person myself, I was forced to outgrow them after the first 2 weeks, mainly because there wasn't a single aspect of their support that was relevant, or accessible to me as a deafened person, so I was forced by sheer necessity really to Do it for myself, (perhaps that is their point !) The fact the sole response was 'We will direct you to yet another charity that is actually non-specific to deafened.' was debilitating, stressful, and pointless. What are we to think ?
A 'dedicated deafened charity', had to refer us to one that wasn't. Like telling a sign user, they could 'try' accessing a hearing charity instead that didn't do sign. Why would we endure stress trying to educate another area, when they claimed to be it ? That it was mainly older people going on stately home tours, further depressed us. It's OK for the odd few that signed up for that, but what about the rest of us ? If you were a younger person there was nothing.
ATR does worry there are people going deaf who just don't now where to turn, as there seems a dearth online of any viable activity, charity, or group that specialises in our sector that is valid or even operational.
Who are we ?:
Deafened people are apart from the 'Deaf & HI' remit (Which is rubbish and discriminatory, as well as abused daily anyway), and need to be treated as a '4th sector' that has very different needs and support supplied to them, as well as a nation-wide set up that is dedicated to speech/Cued/lip-reading/text support as a basic.
How do we cope ?:
After 50 years we still don't have what we need. The fact our area has its own specialisation via text, (Not lip/Cue-reading), gives us the means to keep up with hearing on a more than equal basis in a general sense, but on the ground we suffer horrific neglect as systems are unable to provide that text or lip-spoken support we desperately need, because the demand isn't seen, due to no-one raising the awareness.... Anger also ensues when systems and charities suggest we should use sign language instead, because there is plenty of that access about. But they neglect to tell you the sign area has an aversion to text...
Whether it is a system meet, a doctor appointment, a dental or optician or just an usual 'open' meeting socially, lack of text or lip-spoken access, totally prevents my participation and interaction. You get reduced to 'reading all about it,' elsewhere. Of course we deafened text aficionado's know about technology, unfortunately systems do not ! and health areas will not cooperate because of obscure privacy guidelines. So we sit there in ignorance and hope for the best ?
We can read of Dr's and medical, hospital staff wandering around with ipads to help diagnosis and link to X rays and all manner of equipment to help them, but, they cannot use an ipad to simply communicate to us.. Any media coverage shows medical staff sitting at desks and computer, again we don't get to access them as a means of communication either. There are also countless mobile phone applications that could help too, but again NOT used, for fear of breaking 'privacy' or even 'secrecy' laws, even when the cost is next to nil....
How does it work ? The deaf BSL user has access to remote interpreting in the health area and that is OK, but deafened/HoH asking for text isn't ? Also we find public informational videos contain BSL but, no captions. Social media mirrors that...
What do we need ?:
What we need is a dedicated deafened set up (Not necessarily a Charity), that directly empowers US. The tools are there, but the will to use them is not.
Such is the mess the UK legal system is in, the palantype/S2T operator, the lip-speaker, or the BSL Interpreter CANNOT be used as a witness to any support they give you, you take that support completely on trust, and hope you have a good memory, because you cannot quote, what you believe was imparted to you as a fact.
None of your support can guarantee what they impart to you, it is based on what YOUR academic, memory, and understanding is, not, theirs. Neither do they guarantee they remember what was said to you 10 minutes ago, let alone days or weeks later. Do you remember every word you imparted yesterday ? So no you cannot refer back, you have to get it right EVERY time, or pay the piper.
It is unusual the BSL using deaf person has no awareness of the status of their support, but deafened certainly have to be aware of theirs !