Saturday, 14 September 2019

Exposing AuDism...

Is it not time the American deaf stopped being paranoid about oralism, and accepted choice?  it's preventing deaf people's advance and making their community look very introspective.  We thought the USA was ALL about having freedom of choice and view.

Friday, 13 September 2019

Sign health now with text?

Had the charity and BSL area NOT been so dogmatic about access, subtitling and captions could have been put on their own health relay systems day one, they are just now offering an alternative service costing more duplicating existing access elsewhere...  Sign Health only started text inclusion after complaints went in to the charity commission from deaf people on social media who were left out of health access by sign-only 'access'

How does Sign Health acquaint real access with NOT pushing for inclusion of deaf people to already established services?  The issue is lack of access to localised mental health help, and opposition to deaf clients using interpreter support by deaf organisations, and the NHS.  Deaf Access, after all, is a right anyway.   Why are we having to allow these sort of setups instead by-passing the right?  It's a charity creating work for itself?

Defeating deafness. We will beat it..

hearing loss drug fx-322
slowly but surely we will find a way to erase deafness.  Biotech startup, Frequency Therapeutics, today announced positive results from a Phase 1/2 safety trial to evaluate FX-322, an investigational drug candidate designed to facilitate hearing restoration.  

The trial assessed the safety of a single dose of FX-322 given by intratympanic administration in adult patients with stable sensorineural hearing loss (SSHL) who had a medical history consistent with either chronic noise exposure or idiopathic sudden sensorineural hearing loss. According to Frequency Therapeutics, FX-322 is the company’s lead Progenitor Cell Activation (PCA) candidate for hearing restoration and is described as a “proprietary combination of small molecules designed to transiently activate inner ear progenitor cells and enable the creation of new inner ear hair cells in the cochlea.” 

Positive Trial Results for Hearing Restoration Drug Candidate In the Phase 1/2 study, FX-322 was reported to be “safe and well-tolerated” following a single intratympanic injection with no serious adverse events. In addition, improvements in hearing function, including audiometry and word scores, were observed in multiple FX-322 treated patients. “Hearing loss affects millions of people and current treatments are unable to restore hearing once it is lost. 

The study results for FX-322, which show signs of functional hearing improvement, are very promising and represent an exciting step toward a potential treatment for patients.” —Susan Marenda King, M.D., Neurotologist, Ear Medical Group in San Antonio, TX and lead enroller in the clinical trial “While the focus of this study was safety, we are excited to see initial results in sensorineural hearing restoration as there are currently no treatments to restore hearing for these patients,” said David L. Lucchino, President, Co-founder and CEO of Frequency. “Furthermore, this data provides support for our small-molecule-driven regenerative medicine platform, which has the opportunity to address numerous degenerative diseases.”

Who is to blame for discrimination?

Image result for brexit or bustSocial media debating the point the opposition party led by Jeremy Corbyn is the only person able to address state institutional discrimination against the deaf and disabled.  

Currently, the UK situation is that your elected representative feels he or she is NOT obliged to ensure he respects your vote that got him elected, his party's aim, his leaders directive, or respect a national referendum decision, he can also, while still in  office decide to join a different political party  if they want, riding on your vote.  I wonder if this could happen in the USA?

The issue of discriminations is rightly laid at our own Government's door. For those bemoaning Brexit all we can say is 45 years of membership has done nothing to enhance our access, inclusion or rights, which Mr Corbyn claims they do. In reality, the EU can and does pass any amount of laws to member states (1,000s last year from farming to crossing the road),  and made by unelected people, a direct contrast allegedly with our own form of democracy that demands this day only elected representatives can pass laws.  Germany and France installed own people to ensure they got the decisions they wanted and overruled Poland and other member states to get their way.  Germany is now virtually in recession mode overrun by 1.4m immigrants they are unable include, manage, educate, or accommodate.

France allows their seashores to be used as 'beachheads', to ferry illegals to the UK, they demand no change unless the UK pays them to police their own borders we already pay them to police their own ports and railheads.  

The last word is our own government, not Brussels, who moved the goalposts to 'each according to own', re disability rights, thus dividing the disabled who could only get rights and fairness by lobbying on an individual basis, and even if they won a precedent, it would only apply to that individual, forcing us all to try doing the same.  Our disability campaigners were sold a pup.  We conned ourselves into this situation by buying the argument we should all go it alone as only 'we' know what is needed for us, that does NOT work, since there is no demand seen and no unity of inclusion WITH disabled people. It became a free-for-all.  The Deaf V deaf V HoH v Disability sector is just one disabled area at huge odds with itself.

In order to tackle discriminations at source, we need a 'clear run' at those instigating them i.e. our own Parliament. Mr Corbyn is not the person to do that given he supported the instigation of the hated PIP welfare allowance,  e.g. He also voted 17 times against EU membership and is at odds with own party who want him to do what he is told by shadowy members of the 'Momentum' advisory group, a hard-left junta of vested interest and who have supported illegal immigration, European rapists, European child abusers, people smugglers, and protected Irish and Middle-eastern terrorists while practising anti-Jewish hatred in the Labour party.  These people are based in Jeremy Corbyn's own constituencies and those of his 'shadow cabinet'. A random mob of failed 'focus group' failures with a chip on their shoulders.

In 2005, 14 YEARS ago, the EU said British sign language must be recognised, and 10 years after the equality Act was installed,  today it is unenforceable in education etc via parental right of choice and the government won't debate its inclusion. They and parents voted with their feet and closed deaf schools to utilise mainstream and 'inclusion' policies, to discourage its use. The EU is/was unable to do anything because EU laws are a 'suggestion', not a legal directive..' so the UK duly ignored it.   Rights meant parent are able to overrule.  The state said you cannot have inclusion via exclusivity.  The playing field must be levelled.

The EU did NOT enhance workers rights, the UK Unions did that over 120 years, it was our own government who took them away again, the EU powerless.  It's only 'success' being gender rights albeit stats say this is going downhill again.  The UK installed a gig economy instead, removing the worker status AS employed which would mean holiday and sick support etc.  We should leave out the EU involvements altogether and take our enemy (Our own government and MP's), to task instead, not least because we need to withdraw the singular approach to disability rights and make even precedent MEAN an enforceable law for all. 

Equality, anti-discrimination, rights, and inclusion isn't worth a shit as current laws exist.   They are a suggestion no one really has to comply with and we cannot legally enforce.  We don't have free legal aid, which is another thing we need to change or, we cannot challenge. The DWP state welfare arm has millions of taxpayers money at its disposal to counter anyone that objects to what they do, legal aid would empower disabled to challenge that.  

The EU superstate has failed and its primary members are in austerity mode and worse.  The very image of dire warnings if we leave just shows how much the EU has destroyed the ability of the UK to look after its own, mostly in pursuit of profit since the UK has never in all the time it has been a member had any itself.  We've been asset-stripped.  Leaving the EU and starting all over again is what we have to do or remain a 'piddling little Island stuck on the end of Europe'....

Wednesday, 11 September 2019

NO deaf inclusion, We can't sell that...

Rather a telling exposure of the deaf, they are not viable commercially in media/films/TV their image is too negative.  Until deaf realise their community cannot sustain their go it alone approaches they are not going to get a look in either.  At some point, disability and charitable funding is going to dry up.

Commercially they HAVE to appeal to hearing audiences, that means drop the attitude and lecture approach and start getting into topical areas hearing will recognise, else stick to vlogs on 'What 10 ridiculous things hearing have to do for us..' to be viewed only by the deaf themselves.  Deaf people cannot portray hearing things via sign language because hearing don't do those things.  They cannot preach independence with a terp in tow, that is the image hearing acquaint with.  Hearing viewers don't want to watch token inclusion, and an odd hearing person signing own name or something, and neither do we.

By the time you add captions and a terp, the whole thing is a bust, isn't it?  Writers just cannot find a place for that in making TV and film output it all looks like a pre-planned sop to inclusion.  Deaf roles must be portrayed by deaf people, deaf artists must always use deaf actors etc, Deaf actors must be signing etc, how this equates with inclusion, the reality, (Or other deaf), is never explained.  I understand in some areas it is seen as a job-creation scheme for them but...

Even COLG had to be able to cross the floor and involve hearing.  All we see now are demands for stand-alone deaf stuff nobody outside the deaf community is going to watch justified purely on a cultural right, but that won't make hearing watch it.  About the same level of interest as a minority foreign film with captions strictly for those who think its really clever to make things only they watch.  'Emporers New Clothes' springs to mind. Deaf have to get with what hearing want to see.  They can watch awareness videos and attend seminars whenever they want, but they don't want it on films or TV etc.

"In the first episode of Sundance TV's This Close, a deaf graphic novelist is asked why he didn't make his book about a deaf character. He replies: "I didn't think it would sell." 

There's a self-referential irony to that line. Series creators Josh Feldman and Shoshannah Stern are deaf writers who also star as deaf characters. In fact, they're the first deaf writers and stars of a television show ever. The show draws on their experiences, depicting life in Los Angeles and how the entertainment industry treats deaf individuals. "We wanted to tell an authentic story not just about people, but about the city we live in," Feldman said. 

When the pair started shopping the show around, "The number one feedback we'd always get was 'Why [are] the characters deaf to begin with? What's the point of having a deaf character?' They didn't see any value in having a deaf character," Feldman said. The original concept for the show featured a hearing person as one of the main characters, "because we thought that would actually be easier to sell," Feldman said. "Whenever you see deaf leading characters on screen, they always have a hearing person with them. So we just wrote what we'd always seen — and that's the reason representation is so vital. It really shapes our understanding of what works," Stern added"

Story Sign

But the logic behind inclusive access still seems to be haywire given deaf cannot agree on which grammar to accept.  Deaf don't really understand inclusivity until they do, mainstream is simpy endorsing their isolation by offering them specialisation approaches that maintain that status quo, enhancing some sort of parallel alternative to it all.

Amazon Echo tutorial for visually impaired.

User not Found

Deaf not interested.  And they wonder why 'inclusive' art for the deaf is so suss. Of course, including the obligatory Gay areas, the anti-social medias and encouraging the audience to be deaf for the duration is awareness too (Or not!  Try it for a lifetime..).

Deaf art itself, is neither awareness or inclusion based and its time the powers to be twigged that fact they are being taken for a ride.  Was the script written by the local focus group?  Time to lighten up.....

Tuesday, 10 September 2019

BSL in Holby.

BBC Holby City- Julian Peedle-Calloo from julian peedle-calloo on Vimeo.

A soap opera in more ways than one....


Good Vibes for the Deaf-Blind

South Korean tech giant Samsung on Monday introduced two new solutions-Good Vibes and Relumino - that will provide the deaf-blind a strong communication tool and enable people with low vision to see better. 

Developed in India, Good Vibes enables people who cannot see and talk to have a two-way communication with their caregivers and loved ones using their smartphones. "We are happy we were able to develop technologies such as Good Vibes and Relumino that will help improve quality of life of the deafblind and people with low vision, allowing them to become more aware of the world around them and better integrated with society," said Peter Rhee, Corporate Vice President, Samsung India.

The Good Vibes app uses Morse code to convert vibrations into text or voice and vice-versa. The app has two different user interfaces (UI). One interface has an invisible UI for the deaf-blind, which uses vibrations, taps and gestures, while the other has a visible UI, a standard chat interface, for the caregiver. With the deaf-blind interface, a person uses a combination of dots and dashes to send their messages. The standard interface allows users to type or use voice to send messages to the deaf-blind. 

The text or voice is received as vibrations in Morse code that the deafblind can interpret. Good Vibes app can be downloaded from Samsung Galaxy Store and will be made available on Google Play Store for all other Android smartphone users soon, Samsung said, adding that it has partnered with the not-for-profit organisation Sense India to take the Good Vibes app to the deaf-blind across the country. 

Relumino is a visual aid application for people with low vision. It enables them to see images clearer by magnifying and minimising images, highlighting the image outline, adjusting colour contrast and brightness and reversing colour. For Relumino, Samsung has partnered with the National Association for the Blind (NAB) Delhi. It will provide Samsung Gear VR and Galaxy Note9 smartphones to NAB Delhi, and will also provide training on how to use them.

Welsh deaf committee: Failing the deaf and half a million others.

Image result for dai lloyd walesFind below minutes from the cross-party committee minutes for welsh deaf and HoH.  We apologise for the very late offering but in their wisdom, the committee did not decide to make welsh people aware (Over 575,000 of them with hearing loss) of what was being discussed in their name, or when meets are held.  None of the participants are voted for by the majority of welsh people with hearing loss, simply because they are never asked.  Yet the Assembly noted rights and inclusion participants.

ATR noted they are still very reluctant to invite grassroots to their meetings to comment,  to raise points of order, or to question what is discussed and agreed in their name.  ATR's complaint of reluctance by those running the committee of failing to engage with deaf or HoH people was actually ignored.  Nothing for us, without us, and that means charities do not get to decide either.  'Open meetings' are an obvious farce and on the face of it, and discriminating who meets are open to.  With one deaf club only being noted.  This ignores the majority with hearing in all Wales, this may be charitable and political democracy, just, not as we know it!  

*  There were inaccurate statements from the NDCS in that they supported BSL in Education when the official line was NOT to!  And the national government won't back it either.

* Another issue was regarding ASLI (BSL) interpreters being subject to monitoring, sadly only in North England when it should be a norm everywhere.  We cannot let BSL terps do whatever they want whenever they feel like it, the current systems are failing deaf people, and as a minority are also lip--speakers that area is non-viable as it stands.

*  There was an interesting suggestion we as rank and file deaf and HoH could be invited to cross-party meetings, but there was a reluctance by the committee to endorse that, citing 'security' concerns?  God forbid they let US in!

Clearly, issues are there, but, not being carried forward or endorsed, rank and file would do that.  Quite a few others would be raising serious concerns about the democracy of these meetings, its pointless waffling and inertia, and the makeup of them.  We should not be prohibited making our feelings known because we aren't e.g. a charity.  Charities do not speak for us and it is time the Welsh Assembly realised they are unrepresentative of our view too.  Any perusal of their membership would clarify that fact.  Given Wales has 575,000 plus with loss Charity is unrepresentative and without a mandate.

ATR feels deaf and HoH individual input would more focus the mids on the applaing state of welsh care and NHS support as well as the almost total lack of representation. Especially as they and not charities are creating the campaigns.  Do we NEED a cross-party committee that only meets once a year? is a talk shop, and never does anything?  Could we not just get 50 people out of the 575,000 that exist here to petition the assembly and get it debated in the chamber in weeks?  Unlike Westminster, we don't need a 100,000 to make a point.  

We cannot leave it to half a dozen BSL people in Cardiff or the random deaf club people who bother to turn up, the last one held had just 9 people in it and they counted the terps in that number.  Not on is it?  It's not 'open', representative, or inclusive, feedback it isn't..

Cross Party Group on Deaf Issues

12th February 2019

Cross Party Group on Deaf Issues Attendees – February 2019

Dai Lloyd AM – Chair
Callum Mclean – Wales Council for Deaf People (Secretariat, Minute taker) Louise McGrath – Wales Council for Deaf People
Daisy Cole – Action on Hearing Loss
Debbie Thomas – National Deaf Children’s Society Jayne Dulson - National Deaf Children’s Society Jonathan Joseph – ABM ULHB Audiology
Nigel Williams – South Wales Cochlear Implant Support Group Anthony Evans
Communication Support
Hilary Maclean – Palantypist 
Rachel Williams – BSL interpreter


Michelle Fowler – British Deaf Association Susan Williams – 
ASLI Interpreters  Sami Thorpe – 
ASLI Interpreters Sarah Thomas – Centre of Sign, Sight, Sound 
Andrew Tait – Deafblind Cymru
Matthew Watts – Bridgend County Borough Council Tracey Good – NHS Centre for Equality & Human Rights

Standing Item ‘Access to Health’ on hold until next meeting due to unavailability

Introduction from Daisy Cole.

Chair welcomed all and invited Daisy to begin the first item.
Daisy introduced herself as the new director of Action on Hearing Loss Cymru, and mentioned a project they were working on alongside the National Deaf Children’s Society regarding social care guidance which they can give an update on to the group as the project continues, adding that a literature review has been done so far, as well as running focus groups as well as working with directors of social services & WLGA.

Jayne commented that they look forward to working together and that they feel Daisy’s background in human rights and equality issues will be useful. Chair invited any questions/comments to which there were none.

ALN Code of Practice

Debbie handed out copies that summarised the information regarding the Additional Learning Reforms in Wales and noted it will come into force in September 2020. Its importance was noted due to the act changing how support will be planned regarding additional learning needs from the age of 0 to 25.

She then discussed the code for Wales and described it as a guide to practitioners on how to create support plans for deaf children and young people in future as well as being a guide to practitioners on how to enact said act.

It was also highlighted that some of the things lobbied for have been addressed and listened to, however, they believe there are still changes that need to be made based on the current draft of the ALN code of practice and invited the group as individuals/ organisations to respond to said issues.

They believed the ‘transition’ section of the code could be vastly improved, as it does not currently have much in the way of guidance regarding children and young people transitioning from the education system and into the workplace which they say is an example where young people do not feel confident. Such as further information regarding ‘Access to Work’ in terms of disabled student allowance.

The new practice is weaker than the current code regarding careers advice (as the current code states clearly that a careers advisor must be invited to a review meeting of any individual that has a statement, however, no such statutory obligation exists in the new code, in which young deaf people have asked NDCS to make it a campaign priority due to their concern.

Debbie added that it gives families of children the right to a support plan from birth which was not in place in the past. Previously, statements and support plans were school-based. The role of ALN LO (ALN Lead Officer) was also discussed – adding there would be one in every authority responsible for co-ordinating support plans in early years, however there is currently no emphasis on the people in the role having to work with specialists, which Debbie highlighted is crucial due to deafness being a specialism professionally.

A difference was also noted between the Code of Practice in England and Wales regarding references including teachers of the deaf in which the English code states clearly that where a child is deaf, practitioners must involve a teacher of the deaf in their assessments which NDCS believes is crucial and is not as clear in Wales’ code.

Transport issues were also discussed, as was previously lobbied by NDCS as they believe certain issues have yet to be addressed, which is a clear section of the IDP on transport.  An example  given was that if an individual was placed at school/college away from their home and the cost involved as well as ensuring specialist provision was in place.

Debbie stated they would like to see firmer responsibility regarding local authorities and transport within the code.

Health and education issues were also highlighted. Stating that currently if there is a problem concerning an IDP (support plan) it can be directed to the education tribunal of Wales or speech or language therapy if it is regarding a health provision which could then be taken to the education tribunal Wales, however it is likely for people to be encouraged to go through the NHS complaints however Debbie notes they have been in meetings with health professionals & the Welsh Government who are unclear where certain examples should go in the system which adds further difficulty to any deaf individual hoping to achieve the same thing. It has been noted that clarity is needed regarding said issue as parents may be encouraged to use certain options when needing to complain which may lead to them misunderstanding/ not knowing what they could be missing out on.

Improving health input was also discussed, as there is a form within the code which is to be used by health professionals when giving advice for developing support plans which they Debbie believes could be improved upon, as it currently only gives an opportunity to highlight support they are willing to fund whereas they should have the option to give advice on such things as hearing aids etc.

The Equalities Act was also highlighted, and how it has been mostly unmentioned in the ALN Code which they would find useful if more was added.

Chair invited any questions, to which Jonathan asked if the ALN code paper that was handed out at the meeting could be sent out to the cross-party members via email which Debbie agreed.

Chair added that the process is not ideal, noting the bill’s passage had been scrutinised and was pushed to a vote however the vote was lost and so it was pushed through by the government. They also noted that the two systems of complaining have been problematic for years from the perspective of a GP and an Assembly member as they have attended tribunals in regards to it in which the complaints situation is seen as unsatisfactory and a process that is not ideal.

Jayne added that they are glad to have the support of the chair with the issue in regards to their background in health. She also noted the other transport-related issue in which local authorities have been withdrawing support for transport for children that is within the current legislation.

Debbie mentioned that there were three separate local authorities that have cut transport for learners so far, which they believe is due to it not being a statutory obligation thereby saving costs where possible.

Jayne asked if the group would be prepared to support their response as they do not have any confidence in waiting for alternative legislation but see this as an opportunity to include it within the code, to which the group and chair agreed.

Anthony noted the idea of families learning BSL and the damage that can be caused to deaf children mentally including language deprivation where no compulsory provisions are put in place for learning BSL.

Chair suggested that a proper unofficial campaign could be made, as organisations and individuals. Noting that necessary points should be fed however the responses themselves should be varied as if a number of responses use a similar format/template those responses would only count as one by the government.

Debbie added they would email the ALN code to Callum to share with the group, which could be adapted, changed and have additional points added that would be important to the separate organisation’s needs individually. 

They also agreed with Anthony and highlighted there was a debate the previous week regarding sign language in which the NDCS reached out to some assembly members supporting the point for being raised, however regarding the ALN bill, it should be argued that the type of support should be available through the act and subsequent code, but believes the local authorities are not preparing for that case. Debbie also informed the group that they have contacted the regional transformation leads regarding the importance if that kind of support and if it can be reassured that it is indeed being prepared for, however there has yet to be any responses.

Chair added that a letter of response could be constructed in their name, which Callum is to create.  Chair invited any further questions/comments to which there was none.

Use of Technology & ‘Open’ Meetings

Callum highlighted in the previous November 2018 meeting, that the possibility of opening future meetings to Deaf individuals not representing organisations was discussed, and how since that meeting such options have been looked into, from ‘advertising’ the group by increasing its online presence as well as technological options that could increase inclusivity such as teleconferencing, however the difficulties were also noted as each person attending the meeting would need to have their name given beforehand for registration and security purposes within government buildings, which could prove difficult when creating an ‘open’ meeting. 

It was noted that one way around would be to take note of all those contacted through networks or those contacted individually and have their names passed to the assembly just in case they attend. Callum opened any comments or additions from the floor on how this could be achieved.

Jayne noted the complexity of the matter, and added that previous ‘open’ meetings were held in Llanelli Deaf Club as well as one meeting in Welsh Government premises.

Callum noted there would need to be a way of achieving the same result however having it less open ended than the meeting in Llanelli Deaf Club, and if the meeting could be spread through our contacts in order for preparations to be made for the next meeting.

Anthony questioned if there was a difference between open meetings taking place annually and having every meeting be open, to which Callum responded stating from their understanding, it was asked in the November 2018 meeting that strict agenda points would still be made in order for the meetings to operate efficiently, however the point made was that there should be representation from individuals and to go from there in regards to future meetings.

Anthony noted they believe that due to the difficulty involving technologies, communication support & invitations, that we as a group could look into 2 open meetings a year – one in South Wales and one in the North. All other meetings in the year could be open to an extent if information of individuals wanting to attend are given beforehand, however the 2 big meetings could be for updating individuals on what the group has been doing over the past year and if there are any particular topics that they would like to bring forward for the next year, to which the Chair noted sounded reasonable and achievable.

The Chair also added that names are vital from a security point of view due to assembly members having to be in attendance and so structure in that manner would need to be looked into. The chair then invited any further questions/comments

Jayne inquired whether an agenda would be set for such meetings and if there would be open forums within the meetings which would allow said individuals to speak outside of the agenda, to which Callum clarified that the usual meetings would still allow individuals to attend where possible in which the agenda would be stuck to strictly, and the one a year meetings would have a portion of time dedicated to an open discussion in which it would need to be put in place beforehand.

PM Mark Russell George then joined the meeting.

Daisy asked if the 2 yearly open meetings would be more of engagement sessions as they believe as organisations within the group, we have a very strategic perspective, and ensuring that any agenda included does not overshadow the individual’s agendas/ discussing anything they would like to bring forward, which would help give perspective as a service user directly.
Jayne added the individuals at the open meetings could discuss particular issues they would like challenged and to give case studies of their experiences.

Louise noted said open meetings should be considered to be held in the evenings rather than daytime, to which the Chair added specifically for meetings in the North, it is likely that half a day would need to be booked likely on a Thursday.

Jayne noted that no time is suitable for all, and if we were to engage with children, young people & parents, the school hours may be easiest due to childcare needs in the evening, and so we would need to be flexible but also ask public opinion on the matter.

Anthony asked if there was enough time left in the meeting to give an update on an issue raised in the previous meeting regarding the regulation of interpreters & a newly established regulation body. They had spoken with the development officer from the NRCPD that morning, in which Action on Hearing Loss’ communication team in Peterborough which have said they are continuing to allow interpreters to be regulated by said new body. Noting this was not in regards to AoHL Cymru, rather the communication team in Peterborough.

They also added that they have fed said info back to AoHL and the NRCPD clarifying that as a group from various charities and governing bodies, we are adamant to see one regulatory body, noting this would not necessarily have to be NRCPD, however, it would seem the best option at the moment due to having 1300 registrants as opposed to the 50 registrants with the new organisation.
It was also asked if an individual from the NRCPD could attend the next meeting to discuss the benefits of one governing body and why it should be the NRCPD.

All agreed that could be added to the next agenda, and that Anthony would email Callum to get in touch with the individual from NRCPD to make the arrangements.

The Chair added that the current problem is they cannot find any written documents that argue sufficiently for one regulatory body, even though it would make sense to do so in that way. The next meeting proposed at the time was for midday on the 21st of May 2019

The meeting was then concluded.

Monday, 9 September 2019

My Cultural ID.

Hi my name is MaKenna Dearborn and I wrote a lot of stuff down for this assignment because 00:05 I just wanted to get all my ideas and things out there before I recorded myself.

00:10 So here is goes when I was younger I didn't really know a lot about my background I think

00:17 it was a very typical suburban middle class.

00:20 I went to private school and my parents raised me as Christian but then in middle school

00:26 they switched to catholicism and I remember being very confused and uh around that time

00:33 I went with my maternal grandmother and aunt back to Minnesota to uhmm for a family reunion

00:43 and this was back in 2007 and I remember I was able to see original farm house that my

00:52 ancestor built by hand when they moved here from Czech but I don't know much else about

01:00 uhhmm where they were there because I know some other family went back there to find

01:10 more information but because of World War II a lot of things were destroyed in the war. 01:18 In eighth grade I did an assignment on my paternal great grandfather who served during

01:25 World War II and his family was from Minsk on the border of Russia.

01:30 He..

01:32 I remember my grandmother telling me that she had a hard time communicating with her

01:37 grandparents because they had really strong accents and spoke yiddish.

01:41 So I thought that was really interesting and she also talked to me about the other side 01:45 of the family and I think thats the side I connect with most because I've been out there

01:50 to see my disant family and I've tried to adapt to a lot of the cultural aspects from Sweden

01:59 Ive participated in a lot of events.

02:01 Ive done Midsummer down at Balboa Park because its like a big celebration

02:05 Celebrate the longest day of the year in Sweden. That's always a fun event to go to and then

02:12 we tried One year I tired to do a Christmas Eve smorgasborg which is basically like a buffet but with

02:18 traditional swedish dishes like Swedish meatballs, lingonberry jam, and ham.

02:26 Very traditional Swedish stuff but I guess I would consider it close to an American Buffet

02:33 When I was around 20 I got the 23 and me kid that showed me my ancestry composition so

02:39 that was something I am really interested in.

02:41 I'm just really a big background but my largest percentage is Scandinavian and that was about 02:52 22%.

02:53 So I really tried to dwelve or dive in and understand my background and try to learn

03:03 more things culturally about the different places and where my ancestors were from

03:10 Recently I've been more and more going to Deaf events.

03:14 I don't want to go so far that I'm involved in Deaf cultural but Id say I have a big appreciation

03:21 for it and its something that I value.

03:24 I have a good amount of Deaf friends and because of the career I chose in teaching ASL and

03:29 especially with hearing students there's a lot of misconceptions and a lot of uneducated

03:35 responses so I feel like its important to educate them and when I'm out

03:41 with my Deaf friends I never feel like I should have to advocate for them or help them but

03:46 if they ask me of course I will.

03:48 I think its umm its such a touchy subject because I know that Deaf people value their

03:57 community and because I'm a hearing person its not something you can just jump into and

04:02 something you have to earn that right to be connected to the community and uhhmm

04:12 I think its important so I guess thing I can do to describe my cultural background

04:20 as whole is that its very diverse very mixed so I think that's primarily every American.

04:30 Everyone comes from different places and different background, values.

04:36 Many thanks for listening, I mean watching!

GDA; 1919 to 2019

HoH: I want/do not want a label.

Image result for no labels!Some feedback to ATR's recent blog on labels via social media (Not edited by ATR). 

#1  The awareness gig has failed so it's a free for all, they are all making it up to suit, we don't know really who it suits but there are people making money out of awareness, even if their message is biased and whatever. Logic suggests we ignore them till they go away, but the problem is they approach support systems with their messages and then we find issues getting what we need. Given everyone has own idea of what they need is it even remotely possible awareness can work at all?

#2 I'm totally deaf I was born without eardrums many a time I have been called deaf and dumb that's not true I can talk took me ten years to learn I can lip read I can sign and I can shout back at people I went on to have a successful career as a lawyer.

#3  So the 'Deaf' community 'Need' the label? It's a community essential? I can understand frustration deaf people can frustrate me too, their activists, in particular, I can do without. I don't understand a desire to be someone else. I'm deaf too but I don't see a need to capitalise it, Is there some advantage in doing that? It seems to create more divisions than it unites people.

#4  The trouble is there is so many misconceptions about deafness are you deaf and dumb no it's our hearing that's the problem not out voice I was once asked if I could hear myself think I don't need any labels I have enough confidence in myself to rise above the comments I'm deaf not stupid

#5  As a deaf person (both ears), and with a mother and grandmother deaf too, none of whom ever signed or went to a deaf school/club or socialised with them, I speak well I get called a fraud BY deaf people so awareness like charity needs to start closer to home I feel. I have confidence too so I don't need a label or to align with others which would label me by default. Confidence or lack of it is our real issue, hearing loss isn't. The deaf community thing looks more like 'safety in numbers' to me, permanently on the defensive when there is no reason for that other than compromise is not an option for them. 

#6  Yep, but I don't think it helps them to break out of their situation much it offers a cosy alternative to it. Perhaps they should abandon a desire to be included though because by default they prefer not to be, they are happy where they are apparently. You can't be in it AND out of it, inclusion doesn't work like that.

#7  People can be quick to judge I found when I was in court other lawyers would turn their backs so I couldn't see what they were saying I tended to be ignored in chambers and the dining room one day I got pissed off stood on a chair and yelled quiet then I told them how ignorant and stuck up they were I really laid into them I told them I was deaf, not stupid I got applause and more respect from them after that

#8  I like to say I'm hearing impaired because when you say you're HOH, people just think you're being facetious

# 9  And the deaf will oppose you on that too, it's all pointless labelling.

#10  It is just a preference for how one wants to define themselves. The issue is.... people may define themselves one way. But if another tries to define a person, that is where conflict is created. 

#11   am starting to feel we all have different paths in our hearing loss world(s). And destiny was the guiding light to which path we were designed to follow. 

# 12  Right or wrong, I can't hide the fact I have a hearing loss, that I am hearing impaired, floating in a hearing world that does not always allow me entrance. And I float in around a deaf world who does not always allow me entrance.

# 13  I really could care less what they think... I say what I say based on trial and error and knowing what gets the point across the easiest. The deaf have their own struggles that we do not understand and we have our own that they do not.

#14  The issue is they are better at making that point and we, do not seem bothered about making ours much. The fact remains at least in the UK, there has not been a viable or national HoH campaign run in the last 15 years that has highlighted our need, or succeded, our primary success was getting subtitles to the TV, we did that the deaf didn't. This has given others a 'free run' at the systems to make their point, our apathy is/was our undoing. 

#15   Perhaps we only have ourselves to blame if nothing gets done? I'm not a fan either of using others tactics blaming everyone hearing either, it's all so childish and petty, but essentially doesn't advance anything. 

#16  We appear to be talking our own individual needs to the extent we don't unite for the common good. I've read nothing here that suggests we are all united, lots of posts (Mine included!), supporting the individual approach to need too. I'm a victim as are others here of feeling only I know best what I need. In retrospect, this is ignoring others. 

#17   I just felt supporting issues that don't apply to me pretty pointless too, especially as other areas were intent on doing their own thing anyway. 

#18   The collective approach the 'deaf' use is their strength, has anyone seen a few 100 HoH on the march anywhere? If we really do want to move forward and get rid of all these silly labels and ID angst-ridden things that pander to our insecurity then we have to act collectively too, I'd stick my neck out and suggest the Hard of Hearing non-signing areas are never going to do that :( 

#19   Observing USA areas it's a sham there too, few HoH issues get aired without an ASL using person doing it. Like the UK the 'Deaf & HoH' remit is there to suggest inclusivity or to get funding, but its inclusivity on paper only, we are both areas, going our own way. 

#20  This suggests 'every man/woman for themselves' rather than a unity of people with hearing loss, but where areas go for the same access then we see concern raised and the twain not meeting.  There is a mutual 'standoff' between Deaf and Hard of Hearing when we need to confront and clear the air, where that was tried the gloves really came off and hostility was very apparent, I don't know what the answer is, perhaps ATR owner has a point?  Just get rid of the fake remit of the 'Deaf & HoH' and put clear water between the two primary areas of hearing loss?

#21  That site suggests we discriminate against the Deaf community!!

#22   I don't think so, as I read it, ATR just wants to clarify need and the owner sees dividing the two areas so everyone knows who needs what, (And who that need applies to), as the only logical way of doing it, given they/we won't unite.  It's maybe a cry in the dark really, there is no sign (No pun intended), HoH want unity nor the Deaf... who can make their point without anyone else.

Sunday, 8 September 2019

The myth of Lip-reading...

ATLS An association of UK lip-speakers posts reasons why lip-reading is essential (Or even useful). However, refused outright to send ATR any proof of the success of their nation-wide classes or any degree of skills their students have attained from them.  Either it IS a skill and a viable course, or it is just a hobby thing.  95% of their learners aren't deaf at all and useful hearing is a primary requirement of attending, excluding those they say they want to help.  They don't say what happens if when the useful hearing fails what will happen after, given they have relied on useful hearing to learn, they aren't taught how to cope after.

The association does not have set coursework to follow, it leaves tutors to set their own, and does not require that students have to attain any level of proficiency, if there is a point to this approach perhaps ATLS can explain that?  It's a fun thing?  The much (and rightly maligned BSL equivalent set up), also makes hearing a primary requirement for students to those but at least they suggest there is an aim to achieve.  Just who is being served here?  Is it just one huge job creation scheme for potential support workers?  

Tutors of lip-reading are stating it's to develop 'like with like' situations and mini social outlets so the students aren't isolated, (a worthy aim even if no proof exists that happens), but we thought the idea was to give them skills to 'get out there again' so they would not need to form own social areas?   Few if any classes offer 'street' training, where those who want to lip-read can hone real skills.  While they are attempting random approaches to lip-reading tuition, who is teaching others to speak properly? And, WHERE are the lip-speakers if the demand emerges?

They are in single figures in most areas of the UK, on the basis of that it suggests Lip-reading tuition isn't working or has much point except suggesting it 'might' help..

Your starter for 10...

After all this time there are still people obsessed with labels and terms? Is it not time to adopt the response "NOBODY labels me, and that, includes YOU!'  It's time the USA adopted the UK approach of ignoring these people tolerating these silly attempts to stick a ID on anything that moves.  The basic response we all should adopt should be 'Get a life for goodness sake...' or 'Go outside once in a while..' (Whatever or whoever you are today!)

I'm NOT your 'deaf friend'

All Kudos for kicking the stereotype and exposing the myth.  If only more deaf people would 'come out' and put a stop to this biased and disinformative cultural bandwagon that is causing issues for the deaf and hard of hearing.  The majority with deafness and hearing loss need to speak out, ignoring these people just enables more of the same. 

All deaf don't sign, the majority do not, it's time to create real awareness.  Start challenging the cultural and signing stereotype being applied to everybody.

"You may know someone who is deaf, but you don't know me Unless you've lived with a deaf person, you can't relate to my experiences, limitations or desires, 

I am not your "deaf friend." And I don't want to be. I'm not interested in your friends, or your parents' friends, who are deaf. If you tell me that one of your parents is deaf, I'd be happy to talk about that because I know that you'd have your own experience in what it is like to live with a deaf person. I can relate to that because my mother is deaf and that's something you and I would have in common. 

But if you just know "someone" who is deaf, that does not mean you know a thing about me. When it comes to questions, the boundary between appropriate and inappropriate is even hard for me to discern. I guess it depends on how well we know each other, and whether or not we're friends, colleagues, or strangers. Here's what I can tell you in advance: I appreciate questions about how I manage to tackle daily tasks such as the telephone, public transportation and other things you may not realize are difficult for me. But please don't ask me personal questions. 

Right before I graduated from high school, I asked my principal if she could supply me with two transcripts for my coming graduation ceremony because I wanted my mother and grandmother to be able to follow the speeches and awards as they were presented. My principal smiled confidently and told me that everything had already been taken care of, and that a sign language interpreter had already been hired for our benefit. "Oh, that's so nice of you," I responded, "except that … we don't sign." Many hearing people seem to have difficulty understanding that deaf people aren't born knowing how to sign, and that they, as natural human beings, must acquire language the same way that any other human acquires language. I was spoken to in English by my parents from birth, and I was instructed in English at school. 

English is my mother tongue. I never learned sign language in a family or institutional setting, so please don't act so surprised when I tell you I don't sign. I had been going to this school for six years; my teachers knew me and my family very well. And yet, they still chose to assume what we, as deaf people, would need, rather than to ask. We were all embarrassed. One of the most frustrating things you can ask me is: But wouldn't it be easier for you to sign? First of all, I resent your insinuation that I struggle to communicate. 

Understand that I am not obligated to learn how to sign; those who sign sometimes do so because they want to, not just because they must. And if I did choose to sign rather than speak, we'd have to use an interpreter, and no, I don't think that would be easier."