Thursday, 21 November 2019

My Son's Deafness Changed the Way I See My Own.

Priscila Soares painting her self-portrait.
When my second son was born, he didn’t pass his hearing and screening test. The doctors told me it could be just fluids in his ears. I thought for sure that had to be the case because I’m the only one in my huge family who has a history of hearing loss. But my hearing loss isn’t congenital. 

It began when I was a teenager and I believe it was due to all the recurrent ear infections I had as a child. Even though Jason did have fluids in his ears, after further testing he was diagnosed as profoundly deaf. We did some genetic testing and nothing came up that could relate his hearing loss to mine. One of the major differences between his diagnosis and mine was that his hearing loss came before he learned how to communicate, but mine didn’t. Another was that his hearing loss was a lot more profound than mine. 

Aside from that, I believed that due to my own experiences, I could be a parent he could truly relate to, helping him through the struggles that can come with having hearing loss. Related:​ How I Found an Audiologist Who Could Hear Me Little did I know then that putting all of my energies towards helping him out would unleash a whole new path of discoveries in my life. Having teachers, professionals and advocates dedicated to him from the moment he was born was a grand teaching lesson to me. 

It made me see how little if any of that I received when I was first diagnosed and how many years I had navigated trying to work around my hearing loss instead of working with it. I noticed how many choices I had made in my life out of fear of being made fun of, laughed at or ridiculed. I chose a career in isolation, where I worked as a designer from home and only dealt with clients on a one-on-one situation. Every choice I made was subconsciously guided by how comfortable or not I was with my hearing loss. Jason didn’t know the difference. He was born deaf and that’s the only world he knows. He always had professionals teaching him sign language, speech, how to self-advocate, become more empowered and independent. He is so much more comfortable with being himself that he became my guide and my example just as much as I have been to him. 

As I got more involved with the community, meeting other families, adults and children with hearing loss, caring professionals and teachers, a desire to do a deeper inner investigation of my true calling began to grow. I realized that everyone’s stories and paths were at the same time relatable and unique. We could all learn from each other. All the things I have gone through had the power to help others who were finding their way along similar paths. 

After years of investigating and at the same time making sure my children were old enough to be more independent, I finally took the courage to combine the two things I have become most passionate about: doing art and advocating for people with hearing loss. Art has always been the best way I’ve found to process what’s in my mind. The difference this time is that I was going to allow myself to share it with the world, even though that was one of the scariest things for me to do.

Welsh TV Channel discriminates against deaf.

Image result for S4C
S4C discriminates against the deaf.  It was a good Wales v Hungary football match on Tuesday night. It was highly enjoyable for the viewers on S4C.

However, if this match was broadcast on BBC or ITV the commentary on the match would have been subtitled for the benefit of deaf and hard-of-hearing viewers. But this is Wales, and S4C routinely discriminates against deaf viewers by not providing subtitles. I made a complaint to S4C about the lack of subtitles, in either English or Welsh, for the commentary on the Wales v Hungary match. S4C came back with the routine excuse that this was “due to the English language rights being held by another broadcaster.” S4C has consistently raised “copyright” reasons over the years for not subtitling some items, including songs from Welsh to English. That the “copyright” issue applies to football commentaries beggars belief.

This was an important football match for Wales. The refusal to provide subtitles for the commentary on “copyright” grounds is absolute nonsense from a deaf viewer’s point of view. The issue of “copyright” has been unresolved for decades and S4C has done nothing to resolve it. Deaf viewers in Wales face greater discrimination than those of the UK home countries. It is time S4C was investigated by the Equal Rights authorities and brought to court for blatant discrimination.

Cedric Moon MBE

Ex-Wales Deaf Broadcasting Council Secretary

Wednesday, 20 November 2019

Educating deaf kids about online.

AI for Accessibility

A challenge to Dr Byrne and the BSL act.

Image result for challenge arm wrestleA lengthy response but...ATR cannot allow this academic to continue confusing the public on issues of inclusion and awareness.  ATR addresses each issue as raised:

Why We Need a Sign Language Act in Northern Ireland

The collapse of the power-sharing Executive in January 2017 means that progress towards the legal recognition of BSL and ISL has stalled says Dr Bronagh Byrne.

The debate surrounding an Irish Language Act in Northern Ireland has been well documented and publicised. Less well known is the ongoing battle for a Sign Language Act for Northern Ireland’s Deaf community. Contrary to popular belief, sign language is not a universal language. Each country has its own sign language along with regional variations or dialects. In Northern Ireland, it is estimated that there are 3,500 users of British Sign Language (BSL) and 1500 users of Irish Sign Language (ISL). Both BSL and ISL were officially recognised as minority languages in Northern Ireland in March 2004 by the then Secretary of State for Northern Ireland, Paul Murphy MP. However, this was not accompanied by any statutory protection, legal status or formal Executive strategy.

ATR:  Indeed, but there is little 'BSL' in NI, it is ISL (which includes regional variations).  Northern Irish do seem unable to declare what 'language' exactly they are using and has sectarian areas opposing the 'British' aspect of it.  Because Northern Ireland is unable to govern itself at present, they are being overseen by Westminster who don't rate sign language as a pressing issue.  In reality, the UK mainland doesn't either and is not supporting the immersive status of BSL use, the NDCS in England won't. E.G.  HERE. Deaf people within the UK entirety would be better off focusing on a BSL norm to enable support provision to be more effective, culture doesn't pay your bills just enables the isolation to be more comfortable.

Importance of language rights

Language rights are not only symbolic, but have strong practical implications. They send out strong messages about whose voices are considered legitimate. Without legal status, users of a minority language are unable to access facilities and services on the same basis as users of the dominant language. This is exacerbated when the battle for legitimacy takes the form, not of different spoken languages, but of spoken versus signed languages. Research has shown, for example, that: Deaf people’s health is poorer than that of the general population, with some Deaf people at risk of reduced life expectancy. Causes include a lack of sign language interpreters at consultations including a lack of awareness on how to book interpreters, and a dearth of public health information in sign language.

ATR:  Northern Irish support areas obviously differ from UK mainland provision.   I can state that e.g. Wales has excellent sign language provision, and few are deprived here of support, (there may be rural and postcode issues of course).   Deaf in urban areas of the UK also has good support access.  The issue is far from as clear cut as made out, there are e.g. mental health issues (a reputed 40% of UK deaf children), and learning issues, many are far from fluent in sign, which adds to the problem, more recognition and more BSL, will not mean these deaf issues of inclusion and access will resolve themselves.  It hasn't where BSL support does exist.

This can mean that Deaf people are unable to make informed decisions about their health. The lack of a strong legal framework for support can also lead to young hearing children interpreting for their parents in a wide range of situations, including hospital consultations relating to serious health conditions or discussion of significant legal issues with solicitors. Such situations would be deemed completely unacceptable and inappropriate in exchanges conducted in the dominant spoken language.

ATR:  Informed decisions rely on a complete understanding of the issue involved, deaf education is still poor, and the cultural angle wants to re-isolate it again along the old formats of deaf schools etc a system mainland UK is not really supporting any more as while it strengthened cultural/communal links with deaf people, it failed to educate them properly.  Deaf were/are primed to fail in adulthood.  Whilst deaf have issues at medical and in legal areas, there are some deaf support areas existing to help them, the problem seems to be their support is deaf too and needs help as well with areas like the English RAD unable to fund its own deaf lawyer support system and legal wrangles over 3rd party support.  

NHS access, BSL users rarely if ever get dedicated medical Interpretation it is 'off the shelf' BSL support, but Hard of hearing have no support at all and deaf support areas refusing to help.  Ditto legal areas, this disadvantages the deaf signer, horses for courses.  You don't send support out untrained in the issue that needs addressing.  A level 6 BSL interpreter attempting to empower a level 2 signer is going to provide issues that might not get addressed at all.  Is that a 'NHS system' fault?

Deaf people also have poorer educational outcomes compared to the hearing population with Deaf young people currently unable, for example, to complete a GCSE in their first language. This has led to a campaign by a Deaf schoolboy, supported by Deaf organisations, calling for the introduction of a GCSE in BSL. For the majority of Deaf people, sign language is a language of need, not of choice; a critical avenue to inclusion. While speakers of other languages may have the opportunity to learn another spoken language, this is not the case for many members of the Deaf community. This can compound the effects of crime, with research suggesting that Deaf women are twice as likely as hearing women to experience domestic violence, language barriers meaning they are unable to report such crime, and support organisations lacking the funding needed to provide specialist support to Deaf victims of crime where it is reported.

ATR: Domestic violence IS an issue but not particularly confined to deaf areas, the issue seems to be the close communal/cultural approach where everything is kept 'in-house'.  The fear of deaf women (And men of course), is predominant being isolated and the nature of its social set-ups mean they have a higher tolerance to abuse going on if it means losing friends or it is creating community and social issues for them.  

Community is all for many deaf, far higher a priority than family or education in some part.  One example was in Derby University when funding as a windfall to supporting deaf students, they were faced with a choice, did they want the funds invested in more class support to follow?  Or, did they want a room paid for to socialise in? not one deaf student voted for more class support.  Their priority was quite clear, their education took second place.

Supporting deaf victims suffers interference from 'Deaf' charities and cultural areas.  In demanding 'specialisation' for deaf sign users they fail to recognise other issues of sign skills and the fact such support  disables them from accessing services in their immediate surroundings because of those demands, many deaf refuse to use access to a hearing support area etc claiming 'they don't understand us', of course, they never will if we don't educate them and demanding stand-alone 'deaf specialist' services that ultimately mean treatment is not available to them, they get sent away somewhere cut off from the very community and family they need to survive.  They must learn to adapt to their surroundings.

Legal recognition of sign language

Article 30 of the United Nations Convention on the Rights of Persons with Disabilities (2006) clearly states that ‘persons with disabilities shall be entitled, on an equal basis with others, to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture.’  The legal recognition of sign languages is gaining attention worldwide and laws recognising sign languages taking varying forms, ranging from constitutional recognition, recognition in language legislation and Sign Language Acts as highlighted by De Meulder, Murray and McKee 2019. In Ireland for example, the Irish Sign Language Act (ISL Act) was adopted in December 2017. This aims to, inter alia, provide for the recognition of ISL, its use in legal proceedings and the provision of sign language classes for parents, siblings and grandparents. In the UK, Scotland is the only region to have given legal recognition to sign language so far. The BSL (Scotland) Act came into force in October 2015 requiring Scottish Ministers to promote, and facilitate the promotion of, the use and understanding of BSL.

ATR:  Correct, but the British Deaf Association stated something quite different, in essence, insisted the European Directive gave BSL legal rights in 2005, of course, it did not.   The EU directive on BSL was one of 27 OTHER minority languages (spoken and signed), and more a well-meaning guide to inclusion than a suggestion every EU country had to legally set up a deaf community to run as they want independently of the state set up as some sort of parallel entity.  Ultimately it was left to the host country government to legislate on that.  

The UK consulted areas and found that a blanket recognition of BSL in deaf education, posed issues of choice, and support/teaching availability to parents of deaf children.  Hence the NDCS declaring it was not supportive of BSL that way because parents wanted to choose for or against BSL usage and had that right.   Not enough pro-BSL parents of the deaf could validate an alternative set up again.  Of course, deaf schools par se are going year on year, Wales e.g. now has none at all and only FOUR deaf children in S Wales were deemed unsupportive there, who commuted to Bristol for specialist education.  So not a ringing endorsement deaf schools with BSL would be 'better' for all the deaf, or the only option. Obviously not viable to set up a school for 4 deaf children.

Work to enhance the status of sign language has been underway in Northern Ireland for some time. In 2010, the then Department for Culture, Arts and Leisure (DCAL) commissioned the ‘Consultation Report on the Sign Language Partnership Group (SLPG) Strategic Direction’ Report. This report included a 10 year ‘Roadmap’ which outlined the steps necessary to build the infrastructure of support for BSL and ISL users and their families.  In 2016, DCAL launched a consultation on a Framework promoting Sign Language to ensure that BSL and ISL users have the ‘same rights, responsibilities, opportunities and quality of life as those in the hearing community by enshrining equality and social inclusion in legislation for the current and future generations of Deaf Sign language users and their families’. Central to this Framework are the proposals for draft legislation to safeguard ISL/BSL users’ rights as a cultural and linguistic minority to be able to access services in their own language.  Significantly, for the first time, the consultation process allowed the Deaf community to provide evidence in their first language via BSL/ISL videos on Facebook.

ATR:  For deaf to be included, they have a need to adapt, the current approach seems to be, that everyone else has to or else it is a discrimination of some sort.    I refute the suggestion it is possible to legislate inclusion, it has to be a two-way thing and the deaf are not equipped currently to enable that.  

BSL Education is focused on biased communication approaches to the point they neglect inclusion skills the deaf child needs, so they leave school unprepared to be included, most do NOT hone their sign skills or go to further education either.  In some areas, no signs exists for them to learn at higher levels.  We had one scientist deaf making up his own.

It goes without much statement, deaf groups are opposing English etc that debar them from getting work and of course to obstruct access by default, bilingualism has to be real, and to be seen.  Signed English won't cut it alone either.  The deaf world is not enough and there is no way isolating them with more and more specialisations and concentrating on culture is going to get them a single job more, or enable them to advance themselves.  Mainstreaming has to be supported I agree, but specialisation monitored to prevent deaf backing themselves into a corner again.

The collapse of the power-sharing Executive in January 2017 means that progress towards the legal recognition of BSL and ISL has stalled. This means that, at present, Deaf people must rely on the provisions of the Disability Discrimination Act (NI) (1995) to secure ‘reasonable adjustment’ via sign language provision. In order to do so, Deaf people are required to identify as ‘disabled’; a sharp contrast to their right to recognition as a cultural and linguistic minority under the CRPD, and a position that would be deemed inappropriate for other linguistic minorities. Until this is resolved, the ability of Northern Ireland’s Deaf community to avail of society’s opportunities in their first language will continue to be silenced.

ATR:  As the sole deaf person who attended the DDA launch at Manchester University circa 1995 I can tell you the deaf failed to turn up for that, they preferred a soap opera tour instead.  I was asked to use two sign language interpreters disability groups had paid for to follow proceedings and, I didn't sign.   I had the dubious Kudos of flying the mainland UK BSL flagship at that launch.  Deaf were taken to task and explained they were anti-disability, 'we aren't disabled', they did, however, utilise aspects of the law after it went on the statute.  Which they are still advocating 15 years later.

[The use of capital ‘D’ in Deaf is used to refer to those who define themselves as culturally Deaf with sign language as a first or preferred language unless otherwise stated.

ATR:  The D/d thing is far from supporting amidst grass-root deaf as far more don't sign than do, and few are within any cultural area.  Basically, we find the D just represents Difference and Division, and neither being helpful to empowerment, inclusion, or access, even if it does keeps the deaf online busy arguing amongst themselves.

The BSL area may have sold that concept to the system under equality laws, but it hasn't sold it to rank and file with deafness and hearing loss.  They've just adopted an apathetic 'cest la vie' attitude towards it, and that isn't 'acceptance' is it?  The issue found with this paper was the atypical and highly predictable blanket statements used, where indeed, D/d terms are thrown in all over the place confusing the issue entirely.  

One suspects this is for BSL cultural area activism, a means to suggest a lot higher support for its stance than it actually does have.  They tend to play on the fact joe hearing public has no idea what d or D stand for anyway.  We don't accept why would they bother? it's for systems and lobbyists to argue about and to justify what passes for awareness these days.  Lots of deaf cannot hear, not many are sign using.  There are 10m in the UK with hearing loss (Assuming NI defines itself that way), how many deaf BSL users ARE there?  

Nobody really knows! many have tried to find out and were unsuccessful because the sole reference areas were their own charities, otherwise, data Protection Laws prevented it.  As a result, we get all sorts of figures bandied about from 15,000 in the UK (Last census result), to 100,000+ from the British deaf association, it  might be half a million by now!  

I doubt the paper writer here can ID  a real number either.  Charities that quote these numbers do not have ANY significant memberships either. We don't think such academic throw-ways and easy pickings that deaf people provide for them to debate, provide any real insight to issues or, offers a solution to them either.  

Sunday, 17 November 2019

Using the Pharmacy.

Boots (UK), used to advertise signed access to its pharmacy, I tested it and it wasn't there. The reality is Boots and other areas encourage staff to attend 'awareness' areas to learn basic sign (They don't work!), and then if or when a deaf patient asks for support they ask said staff to help out, they forgot that staff turnover is a huge issue and the only member of staff who could finger-spell a bit had left their employ.  

It goes without saying an amateur hearing person barely able to fingerspell the ABC would NOT be able to translate effectively.  Charities like the BDA/AOHL etc who run these things need to stop the con of sign-awareness that clearly is no use to the deaf or for anyone who lip-reads.

Approaching the SS system to help was met with a NO. Apparently, this type of support is 'social' and thus the system does not have to support social aspects of deaf people.  Or does it?  Deaf older people who need help with shopping etc DO get support from charities and paid for BY the systems, its time support wasn't split into social and system-based have and have-nots.

E.G.  a deaf person wanting to visit a relative in residential care was turned down under the same rules, visiting a  relative was a 'social function' so the deaf not entitled to support for that.  Turning to Direct Payment (A welfare allowance designed for crossing the social/system divide), we found it was run by Local authorities who turned deaf people down unless they were blind as well.

The idea is to ensure deaf never have the real ability to move outside their own community basically because it cannot be funded.

Unus Annus

And the prize for the weirdest deaf post this week goes to....