natalyad

Fire alerting for deaf people

2025-01-08T23:49:02Z

I was recently discussing how you know about fires and realised my reply thread could be a blogpost, so here you are.

I am deaf enough that without hearing aids, and while I'm asleep I won't hear a fire alarm, not even if it's really loud. I didn't have access to deaf-accessible fire alarms till I was nearly 30.

UK: Free fire alerting installations by fire or social services
In the UK often local fire services or social services will fit deaf-accessible fire alarm systems for free. In our case, the service was so unreliable and they kept not turning up (if there's a fire, the fire service will just not show up). So we bought our own.

I am not naming brands cos I don't want to get sued by some corporate whatevers.

Domestic deaf fire alerting systems in the 2000s and why ours sucked
In about 2009 we bought a system with wireless detector units and a bedside unit which has a flasher and a vibrator to go under the pillow. The units all get paired with one another on a kind of wireless network. The one we had was a standard domestic product that happened to have flasher/vibrate units. I found the LED on the bedside flasher unit which controlled the vibrator unit obnoxiously bright, so we had to put tape over it to dim it (like many deaf people I'm hypersensitive to bright or flickering lights or LEDs).

We didn't like this system though cos we found that if one of the detectors fell off its wireless network, the unit by the bed would chirp and the LED would change colour and flash... Not very deaf-alerty. It woke my partner but didn't give helpful information like WHICH of the 5+ units was not connected.

We also found the battery life of the detector units was poor. They claimed average of 5 years but we weren't getting 2 on multiple units. When a unit failed, the unit would chirp and then all the others would chirp afterwards so it was hard to know which was the failed-chirp and which was an echo-chirp. this always happened in the middle of the night (when it got cold and the failing battery's voltage dropped). These chirping units did not keep any persistent-alert, so unless you could locate the sound of the failing unit by sound, you couldn't work out which unit didn't work properly.

Again, not deaf-safe. This was waking my partner (and by extension me) repeatedly night after night, as partner would be running round the house trying to hear which unit was fail-chirping amongst all the echo-chirping.

Super stressful and beyond useless. After spending too much money replacing units with poor battery life repeatedly we stopped using the system.

Geeky partner did a fire alerting that most people couldn't do
I'm lucky, my partner is an electronics and computer programming person. She bought a higher end commercial fire panel unit for a larger building and detector and other parts for this system with WIRES to detectors which have strobes in them. My partner used the strobe/vibrator unit from the old system and did the computer programming to wire and program the commercial fire system into our very home-brew alerting system (fail safe, so it runs without mains for a bit or if the alerting system goes down).

While it's not up to commercial standards and it cost about 2-3x the usual domestic deaf-friendly systems (especially the panel), it's a lot less stressful and much more reliable. It links to stuff like using our alerting system to make all our house lights come on at full brightness and we have bright blue LEDs and LED strips so it's "FIRE". The commercial system detectors are about 30% cheaper per unit than the previous system. All the detectors also have a strobe and our main alerting system has separate strobes everywhere including the bedroom. The bedroom strobes only go off for fire, nothing else. If there's an issue with any of the units, the central panel will display exactly which unit it has an issue with and it stays there till someone actively re-freshes it. We can turn off our house-alert strobes if a strobe-sensitive friend visits (or plonk something over the strober).

Not everyone can do this level of research, affording the system, wiring and programming.

Deaf friends had a different rubbish deafie fire alerting system in the 2000s
When I was a student, deaf friends of mine had a different domestic "deaf friendly" system to the one we had (and it was nearly 10 years earlier). Their system did wake them up, but it also false-alarmed so much that even after getting repairs it kept false alarming.

Eventually after several nights of poor sleep, one of them smashed the detectors and they "did without".

Portable deaf alert systems
There are portable deaf-fire-alarms which pick up the fire alarm sound and will trigger a strobe and or vibrator unit. These are common in hotels or university halls.

I haven't had good experiences with them though. I had to try one at a former job, it didn't go off in two separate buildings unless it was within 1m of the sounder - which rendered it useless. I know people who have used the unit I had in halls and it was also hypersensitive, going off with the noise of their shower in a small ensuite student room, even with the bathroom door closed which caused other issues.

In hotels, if you ask for the deaf alerter, more than 50% of the time the reception staff don't know what you are talking about. Or if they do give you the unit, there's no instructions and often it has no batteries or flat batteries in it. The unit I'm thinking of used C or D type of batteries which aren't always that easy to find in a hurry, say late at night when you arrive at a hotel. I don't bother anymore cos I just can't face the hassle cos it's hassle and anxiety in advance "will they have one that I've booked", will they force me into a disabled room which doesn't have a bath (I need a bath) and will that cost me extra? And or hassle and anxiety trying to hear a stranger to get the unit and or batteries who probably can't help cos the corporate system stinks. I can Google instructions.

Crap systems are often worse than no system
Systems that don't alert to faults in a deaf-aware way are dangerous - not all deaf people share houses with hearing people.

False alarming is dangerous, it trains people to ignore the danger signs.

Systems that are unreliable and or do not last as long as they claim are dangerous. It's too hard to complain all the time. Easier just not to bother. Maybe the system my friends and I had are better now, I don't know, we don't use them.

Anywhere that uses the portable deaf alerters are legally obliged to train staff on their use and make sure they work reliably in the environments they are used in. I should encourage deaf people to assert our rights. I haven't stayed alone in a hotel alone for over 1800 days (thanks Covid!) so it's not been a battle I needed to pick...

Workplace fire alerting - can be a battle
Workplaces can often put a strobing unit in the same place a fire alarm sounder goes, OR they can easily wire in another unit for a deaf person.

Unfortunately in 2014 the law changed so that in an open plan space, if one unit has a strober, they ALL have to have a strober, which can cause access-clashes for people sensitive to strobers (even tho they should be able to use a non epilepsy triggering frequency). This can cause issues in open plan spaces. I don't understand this law and feel it is yet another case of not coproducing with deaf people properly and just assuming we'll tolerate badness or suffer bad solutions.

Many larger employers want deaf people to have a pager that vibrates. I will not use one of these systems (see below) cos as well as bad experiences, they individualise the fire alerting to the deaf person. They create a burden of deaf-person remembering to have the pager on them, the deaf person remembering to charge it, the deaf person ensuring it doesn't fall down the loo etc.

Workplace systems that rely on another person are very bad and should not be used as routine. I know several deaf people who had a "buddy" who was then not in or forgot on the day the alarm went off, everyone evacuated and the deaf person did not realise until later. That's a horrible and dangerous situation!

I don't know what the answer to open plan non-pager alerting is as I haven't yet had to deal with it. I anticipate "unfun" cos I won't use a pager and employers will want me to use a pager.

Some of my experiences of workplace fire alerting
In one job where there were open plan with 200+ people on each floor, there was a brilliantly comprehensive fire system which worked really well - it was for anyone who couldn't evac typically, not just disabled but was significantly pregnant, injured etc. All by self-declaration. You were encouraged to self-declare for known reasons in advance and got shown round. The system was SO good a non disabled colleague who hurt his leg the day before, just used the refuge system cos he knew it was there was there was zero stigma and positive encouragement to use it.

Another job it took the employer over 5 years from disclosure to installing a working system. I had to give permission to ManagerTwit to share my deafness with 4 people but ManagerTwit who told those 4 people, told them "Natalya will contact you". When I arrived, I asked about fire alerting and no one knew who the 4 people were. ManagerTwit worked in a different building, everyone was scared of, or disliked them. I was given a fire-safety tour by EstatesTwit alongside 2 new starter colleagues, but I couldn't understand EstatesTwit's accent, he wouldn't speak up or slow down and we were walked at high speed round this unfamiliar building. I asked about the alarm sound and was told "It's really loud, you'll be fine". I explained how deaf I am and got told "the alarms are 60dB it's fine". I explained again I can't hear 60dB at any frequency without my hearing aid. I asked for a bell-test and this was just ignored and refused a lot.

I kept asking but the bad manager, HR and Estates all buckpassed and I was bullied repeatedly by HR for "not sorting it out" even when I showed proof of following their instructions to ask Estates. I got a nicer manager and they tried but they and their manager also got stonewalled and gaslighted at every turn.

The first time I heard the alarm, I thought it was Yet Another Pneumatic Drill outside the building. I only realised it was the fire alarm cos the colleague I happened to be talking to white with fear. We evacuated. The bell sound was actually better for most deafies as it was a lower frequency sound like a bell, not higher frequency like sirens tend to be. More deaf people have better lower than higher frequencies (especially cos age related deafness is usually higher frequencies first).

We had 3 actual fires in the building over the next few years, a few toast/oven burning incidents in the kitchen and then a faulty heater in someone's office. After the last incident I made a last ditch attempt to get something. The only option was to try a portable system, which didn't work...

I got really fed up and my nice local managers were equally flummoxed. So I wrote a threatening legal letter (effectively a Letter Before Action) to the director of Estates asking for an alarm within a month or I'd sue, tell the Health and Safety Executive and the local fire service. This threat letter worked well, I got prompt director of estates responses, apologies, requests for information to see where things had gone wrong and two men measuring up within 2 days. The flashing unit with sound was installed within 2 weeks and did work.

The installer guy was lovely, he let me listen to all the sound options to choose the best one. I later found out they got it through so quickly cos unlike every other purchase which requires purchase order number requests, layers of approvals and then whatevers, the Director told the frontline installers "Get It Done, paperwork later" and they had a flashing sounder ON THE SHELF...

Pagers and why I hate them
In another office, I couldn't have a wired in strober cos it was open plan and the law doesn't allow just 1 strober. I got told to have a vibrating pager... I went to collect a pager from the building reception. No battery in it. Awful confusing instructions. I happened to have batteries so I sorted that.

The pager went off with every single fire-alarm test in every single building across my employer's estate which had 30+ buildings. This involved vibrating alerts every morning for 2 hours at least. I left the pager on my desk when going to a half-day meeting, it buzzed and buzzed and buzzed. My colleagues eventually yoinked the battery.

Sources of deaf alertery things
I highly rate Connevans for deaf gadgets of all kinds including deaf friendly fire alerting. It looks like RNID wound down their shop and direct people to Connevans. https://www.connevans.co.uk/catalogue/11/Deaf-Equipment

If you are in employment, ask your estates department and if they don't help quickly, then try HR. If that doesn't work, write a complaint to the "Director of Estates" explaining your issue politely and asking for a fix within 4 weeks or you will complain to the Health and Safety Executive (HSE), Fire Service and raise a disability discrimination grievance. I have helped several people do this, especially after they've been forgotten during evacuations and it has worked every time.

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Free online British pronunciation guides

2018-06-14T19:10:19Z

There are many reasons people struggle to pronounce words. They may only have seen them written down; English may not be their native language; or they may have a disability like deafness making it hard to hear, or dyslexia making it hard to break words down.

This post links to some free online dictionaries which provide a British English pronunciation guide. Some of them have web browser extensions and apps as well.

Cambridge Dictionary at https://dictionary.cambridge.org/ - various iOS and Android apps are available.

HowJSay at http://howjsay.com/ - iOs and Android apps available.

Macmillan Dictionary at https://www.macmillandictionary.com/

Oxford Dictionary at https://www.oxfordlearnersdictionaries.com/

Dict CC at https://www.dict.cc/ - can translate terms between many languages.

A good word to compare British with American pronunciation is "advertisement" or "garage".

These dictionaries now also cover specialist jargon such as medical or legal vocabulary. If one of them doesn't have your word, try one of the others.

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Live captioning for events and conferences

2018-03-23T18:26:03Z

Reliable verbatim Speech to Text Reporting (STTR) for live events

TLDR: If you are looking for accurate and quality live captioning for events and conferences then you NEED to request NRCPD registered 'Speech to Text Reporters (STTR)' formerly known as palantypists.

Please do not use 'respeaking' it is not quick enough, accurate enough or fit for live captioning work.

(This blog originally written in 2018, updated in December 2020)

Skip to how to book genuine STTR.

My focus on captioning for deaf people

While I know captioning is useful for many groups, I speak from a deaf perspective. Deaf people may not have had access to the audio, or only partial access. If there are errors, deaf people may not notice or realise they are there and will come away with an incorrect understanding of what was said.

What is the difference between Speech to Text Reporting (STTR) and Respeaking for captions

Speech to Text Reporting (STTR)

Speech to Text Reporters known as STTR operators use a specialist keyboard (palantype or stenograph) and software so they can input words phonetically and have them show up as actual words on a screen. STTR ops can produce 200-300 words per minute at 98% accuracy. Slightly lower accuracy rates may seem reasonable, but at more than 2-3% errors the intelligibility of the captions decreases and the risk of errors changing meaning increases a lot. Errors are usually very obvious and occur most in people's names and specialist words. Providing STTR operators with preparation materials in advance which include people's names and specialist words reduces the error rate and increases their speed considerably.

STTR ops are registered with organisations like NRCPD (National Registers of Communication Professionals working with Deaf and Deafblind people) who require members to provide proof of their qualifications, undergo training including in ethics of communication support for deaf people and have a have a code of conduct/ethics as well as other things.

Respeaking

Respeakers work in pairs with one respeaker listening to what is said and re-speaking it into specialist software which they have trained to their speech, and the second respeaker going back to correct errors. Every 15 minutes they switch roles to rest their voices.

The accuracy rate of respeaking is lower and errors are less obvious as they tend to just miss out words entirely or substitute the correct word with another word which may not obviously look out of place. Respeakers can't go as fast as 200 words per minute. The slowness means they lag more and more behind the speaker which makes it harder for deaf users to follow. Respeaking often ends up (without indicating they're doing it) skipping entire sentences or paragraphs when they get too far behind the speaker and try to catch up.

Respeakers have no professional registration and no guarantee of being trained about the importance of their role to represent speech correctly for those who otherwise do not have access to the audio. Respeaking is better used for captioning non-live content where someone can listen and correct the captions better afterwards and speed is less important.

Why am I writing about live captioning?

Today I tried to access a livestream of a disability conference about ableism (disablism) in academia. I saw the caption provider and my heart sank...

Respeaking...

This article about respeaking covers many of the issues

Respeaking errors

I listened carefully to 5 minutes of audio and even I as a partially deaf person picked up multiple errors including:

Entire sentences which I half-heard didn't show up at all in the captions.

There were several occasions where single words were just missed out.

At one point the word "sensitive" was captioned as "intensive". That's a massive change to the meaning of what the speaker was saying.

Another error was an academic's 'principle' "Frank's remission society" was mis-captioned as "part of the remission society" removing the academic's name and work which was effectively an inline citation which was a critical shortcut to the meaning.

Complaining to the conference organisers

I tweeted some complaints about the quality of the captioning and it turns out the conference organisers weren't happy either! They had provided full scripts in advance which would definitely have helped STTR operators and should have helped respeakers.

Of course by the time issues are detected on the day, it's too late. The conference organisers are unhappy. The people relying on captions are unhappy.

Conference organisers don't know the field of "live captioning" support" so are at risk of being scammed or ripped off by agencies which only actually provide poor quality captions. Cost isn't even an issue here as respeaking costs the same or often more than genuine STTR.

How can I book reliable quality STTR?

STTR can be provided in-person or remotely. In person is best for live conferences and often not more expensive for half or whole day events. For anything lasting more than an hour or so, two STTR operators will be needed "co working" because of the demands of the work.

Remote can work well for webinars and very short events but is less good for on the ground events as they lose visual context. There are risks around managing technology to transmit the event audio to the captioner and maintain suitable internet connectivity.

There are two main ways of booking STTR (in person, or remote).

Go directly to STTR Operators

The Association of Verbatim Speech to Text Reporters (AVSTTR) (pronounced Av-Ster) website has options to
1) "Book a reporter" which puts out a general enquiry to everyone in their organisation or
2) "Our reporters" which shows individuals and where they are based so you can contact them directly and see if they are available for your event.

AVSTTR members are all registered with NRCPD and reliable. STTR operators prefer to be contacted directly and you may be able to get better rates.

AVSTTR website contains lots of useful information about STTR as a service.

Go to an agency for STTR operators

Often organisations have procurement rules or it can be easier to use an agency.

However BEWARE some agencies may appear professional, experienced and competent, but in practice frequently provide a very poor captioning service like happened at the conference above. One agency I will not use is AiMedia - who wrecked the above conference and at least 3 other events by sneaking in respeaking instead of STTR; sometimes even when STTR was actually requested.

If I use an agency, I ALWAYS go to either:

121Captions who are deaf-led by Tina Lannin who uses STTR herself and have served me well for over 7 years now.

MyClearText who are STTR-operator "writer" led by people who used to do decent captioning for the BBC.

121Captions and MyClearText websites contain lots of useful information about STTR/live captioning as a service.

There is a great film by some American STTRs (called CART) about the technology and STTR writer expertise behind everything they do. Audio description due soon and will be linked when available.

Go back to top of this blogpost.

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Teachins inclusive and accessible - give it a try

2018-03-15T14:12:09Z

Are your #USSStrike #TeachIn sessions inclusive and accessible to disabled attendees?

I am a deaf and disabled person who has been excluded from teachins and strike sessions because free and simple access improvements which might increase access aren't even being thought of.

If we want to revolutionise education and teaching, that needs to include us the disabled members of our communities too.

While some things may be expensive or time - consuming, there are many zero cost, fairly quick and simple things which could be done.

I have compiled some suggestions to help you make everyone more included. I'd like to see more of these become the norm for teachins.

QUESTIONS YOU CAN ASK YOURSELF
Where is your session being held? What are the barriers to access?
Can people physically get in? Are there options to allow people to sit nearer the speaker? Is there space for different seating or people using wheelchairs, assistance dogs or mobility aids like crutches to get in? Can you actively direct your audience to be considerate and aware of people's needs? Could you invite people with any difficulties hearing to sit nearer the front? Can you facilitate group discussions carefully so people don't talk over one another or interrupt. Do you need to recruit a co-facilitator or assistant to help do logistics and welcome? If you as facilitator make inclusion and access a priority throughout, others will follow.

SPECIFIC SUGGESTIONS

Give clear info about your session, length, type of content, subject and a brief outline and loose order of content.
=Aids people who experience barriers involving uncertainty, hearing, seeing or sequencing...

Summarise any visuals (images, graphs) descriptively and functionally (what does it look like, what is it meant to convey) as you go along.
=Aids people who experience barriers to seeing, processing or extracting meaning from visual information.

Upload outlines, prep notes and anything which might help someone experiencing barriers to hearing to somewhere attendees can download or access them during session (QR codes or clearly write shortened url on a big piece of paper - read it out for people who can't see the paper).
= Aids people who experience barriers to hearing, processing, concentration and memory.

Create an open Google doc and encourage those who wish to, to join it and make notes or share their own relevant resources in there.
= makes inclusion a group responsibility, may enable some people to engage and interact who would struggle verbally.

If you've uploaded videos, use a platform which can auto-caption, do that AND allow users to correct them. (better audio creates better captions which are quicker and easier to tidy up).
= Auto captions aren't enough on their own to give deaf people access, but they are better than nothing for zero/low budget endeavours and sharing tidying them up shares responsibility for inclusion.

Use headings to break up text into logical structures.
= This improves the navigability of your document, especially for people using assistive technology (such as software which reads out text).

Provide text description of images. If you can't find image description in your system put it in a paragraph next to the image. If users comment create a community rule that everyone describes their own images.
= enables people experiencing barriers to perceiving or understanding visual information to know what is communicated by it.

If using uncaptioned video as your delivery option or in resources, consider writing a brief summary of what is covered and salient points. If you can find or ask others to help find equivalent or similar text/other format resources that's even better.

Link to further material or your sources. Consider a range of different formats - if you've done lecture in person or video, consider text and captioned video resources.
= Different formats automatically increases accessibility, people can use resources which have the fewest barriers to their access.

Ask around and openly seek ideas to increase accessibility. Assume you do have disabled people in audience even if you can't identify us. Accessibility is a shared responsibility.
= An open, welcoming and supportive attitude enables disabled people to take up access options. Access is a right not just a nicety.

Follow (listen to) people on social media who talk about disability access and inclusion.
= This is a great way to learn about what is possible without demanding dis-privileged people use their limited energy to educate you.

Search for terms like "make X accessible".
= there are free resources out there. Seek them out - share them.

I will try and collate some useful resources for another post.

Do people want me to do a teach-in on making teach-ins inclusive and accessible?

I also welcome additional ideas - tweet to me natalyadell

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#DeafMust Suing HMRC for deafness discrimination over phones

2018-02-19T23:50:54Z

In 2013 I successfully sued HMRC for 'disability discrimination' with the help of Unity Law (which is now Fry Law) for their repeated requirement that I use telephones to contact them.

The only thing I regret is that I did not take legal action several years earlier.

When government departments are being discriminatory and poorly accessible I DO tell them I successfully sued HMRC for disability discrimination and ask them if they wish me to sue them too!

For a summary (but still quite long) overview of my HMRC case including deafness issues.

I also summarised and timelined all my dealings with Unity Law so people can see that it isn't scary, just quite a lot of work.

HMRC ended up paying me significant financial compensation, writing me an apology and paying my legal costs (covering legal costs is less likely to be possible now due to something called Qualified One Way Costs Shifting).

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#DeafMust Casual discrimination in prospective employment

2018-02-19T17:24:44Z

I've been trying to think of things to write about for the #DeafMust campaign. I keep thinking . o O ( I'm lucky, I haven't had much discrimination for my deafness... ) before thinking of yet another example...

After I graduated from university I started applying for jobs, some at the local library service as my degree is in information management and these looked like viable entry level jobs. One of the librarian jobs I applied for had a "tour of the library" with info being provided about parts of the job.

A small group of us going for this job were shown the main library area for shelving books, front desks for loans and returns of books and other materials, public computers where patrons needed technical support, the back office for moving books around and logging them in and out of the computer system and finally the other office where staff handled incoming calls or phoned people about overdue loans.

The idea of the role was that everyone did all of these 5 activities in approximately equal amounts. As I'm deaf and I can't hear the phone I asked the guide if there was likely to be a chance that I could swap phone-shifts with colleagues and cover more of the other roles, especially technical support of public PCs which we were told most staff hated. I explained that it would be dishonest of me to try and do phonecalls which I couldn't hear.

The reply was "No, that would not be possible, everyone has to be treated the same".

I was quite shocked at this, as I knew that employers were supposed to make adjustments for disabled staff, and I thought I was making a reasonable proposal. I wasn't being lazy, I was being honest... I can't 100% remember now, but I think I ended up withdrawing my application.

I now know that response was probably unlawful.

Sadly "We have to treat everyone the same" is very common. BUT (while I am not a lawyer), it is almost certainly not a legitimate justification for not making an adjustment for deaf or disabled employees.

And finally, while I emphatically do not believe "you asked the wrong person" or "you asked in the wrong way" as excuses for not making adjustments - in this case, that guide was probably not the best person for me to have asked. It wasn't her decision to make. If I had asked HR or a senior manager I may well have been able to get phones changed for me as I has been done in other jobs I have had. I am confident none of my colleagues have resented me not using the phone, I make up for it in other ways.

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#DeafMust No deaf awareness in this eye clinic.

2018-02-19T00:44:31Z

Deaf awareness from staff makes the difference between hospital appointments being mostly-accessible and completely inaccessible (and majorly stressful).

I had a hospital appointment with an eye clinic because I was having some problems with my vision.

The consultation got off to a bad start when the Clinician insisted on the door being left open and I explained I was deaf and needed it to be closed so I could hear the consultation. Clinician's excuse was that people came in and out of consultation rooms to work. I said that was fine as long as they were quiet and closed the door behind them.

I told the Clinician that I am deafer than most people realise from my speech, hearing aids do not give me perfect hearing and that I need to lipread people to understand speech.

Despite being told I needed to lipread which requires me to look at people's faces, Clinician started doing eye tests which involved covering one of my eyes then the other while talking to me. As I could not understand her, I tried to look at her which wrecked the test. She would not explain the test in advance or give me any warning of instructions. We had to do some tests in the noisy area we'd closed the door from including going into another room (which partner closed door to) where it was made dark. Again no advance explanation while I could lipread so I did more things incorrectly because I could not understand the instructions.

Throughout the consultation I repeatedly asked Clinician to speak louder and more slowly which she did not do. She got very grumpy with me whenever I asked her to repeat herself. I couldn't hear her well, but I could see the annoyed facial expression and body language. At the end she told me my reported issues were not a part of my known-condition with clear implications that she did not think my issues were genuine. She reluctantly agreed to refer me to see one of the doctors -- but that referral never arrived.

It was another 4 years before I got an explanation for the vision problems - my GP referred me to one of the doctors Clinician should have referred me to!

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BiCon: Celebrity attenders is it really that big a deal? (PUBLIC)

2016-08-16T10:23:39Z

I am reposting this verbatim as written in April 2013 from my private blog to my public one as I think many of the points about change and supporting new organisers still stands

I too have my reservations and discomfort about the "Special Guests" at BiCon 2013.

However I'm not sure my reservations and discomfort means that special guests are a problem and I thought I would try and unpack my thoughts here.

( Long, probably not well structured but discussion absolutely welcome )

I don't know what BiCon 2013 will be like. I have booked my ticket. I'm looking forward to it.

I hope it will be different. Each one is. I hope I'll be envious of some of their ideas.

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Guest-post: Implications of Brexit (Economic and what that really means for you)

2016-06-26T10:25:41Z

This article was written by a friend of mine who cannot put it under their own name but is happy for it to be shared

The company I work in will have to move the business to Europe because the law states we can only operate from inside the EU. That doesn't mean we will have to physically move (I'll have to commute, probably) but it does mean that all the tax this company pays will now go back to Europe and all the jobs we create in future will be based in Europe.

We've switched the recruitment of three new members of staff to the European office already. The UK office will be an outpost and it's possible that eventually it will close altogether.

The legislation we work with is called REACH. http://echa.europa.eu/web/guest/regulations/reach/
It governs the rules on the safety of registering, importing and exporting chemicals in the EU. In order for the UK to import anything from the EU in order to manufacture stuff, the whole regulation needs to be renegotiated. It's the longest and most complicated piece of regulation in existence and aspects of it change annually.

It took Switzerland 7 years to renegotiate theirs and it cost them an absolute fortune to do and maintain. Tax payer money.

Here's an article from 2008 about the issues that Switzerland was facing at the time: https://chemicalwatch.com/592/switzerland-faces-tough-choices-on-reach (subscription only)

Here's an article about what is in place currently - note that it is on it's 4th revision by 2012: http://www.chemsafetypro.com/Topics/CH/Swiss_Chemicals_Ordinance_ChemO.html

Anyway, say you work for a company who prints books. One of the things you need is ink. Ink is made here in the UK with chemicals imported from the EU. The ink factory is licensed and they've been making ink merrily for 50 years. But now they can't buy the chemicals to make ink from the EU without employing a representative inside the EU to do their paperwork. Same chemicals from the same manufacturers as before, but a whole new cost and lots of red tape to do so.

Another option is to import directly from China or India. So, you need to employ a representative in China or India to do your paperwork. Also the Chinese chemicals industry isn't as well regulated as that of the EU, neither is the Indian. Don't get me wrong, they are in process of sorting that out but they are way behind the EU on that front. So, do you get what you pay for? Possibly. Is it cheaper? Well yes, before Brexit it possibly was but now you have to pay a representative and the Chinese and Indian companies won't miss a trick in putting their cost up. Supply and demand.

OK, so you try to import from the US. Good luck. You'll need to employ a representative in the US to do your paperwork for you and the US regulation is far far more stringent than the EU so there are hoops you must jump through. It's going to take time. Time is money.

These are best case scenarios IF the UK manages to negotiate its own regulation and it follows similar lines to that of REACH, which it will have to, otherwise the EU and the US won't deal with the UK. After all, who wants less safety data on the chemicals we use every day?

So, who carries the additional cost burden here? The ink factory in the UK, either increases their costs for ink or reduces their staff / overheads.

The printing company has to pay increased prices for ink, so have to increase their prices for printing or reduce their overheads / staff.

It's that simple. You don't know whether your job at the print company will exist when the renegotiated deal for import / export is finally ready. In short, everything is going to cost more and take longer.

Now apply what I've said above to petrochemicals. Basically the base for more or less everything you use in some form or another. The plastic in your home, the fuel in your car, the tiny plastic caplets your drugs come in. Well, they'll be OK because they are huge multinational companies and have been moving their staff out of the UK to subsidiary offices in various parts of Europe, that already existed, since Brexit became a behemoth on the horizon. They've sorted all that out and none of that business will be done in the UK going forward, none of the tax will go into the UK and the staff, when replaced, will be replaced in Europe.

Now apply the same principles to companies like Nissan, BMW, Pfizer and any other non British owned companies manufacturing goods and employing staff in the UK.Why would you employ people in the UK when you can employ people in Europe taking into consideration the mountain of red tape, time and money that getting anything imported or exported to the EU?

Can you see how TOTALLY screwed we are now?

Even if everything comes out as well as it possibly can.

Even if the renegotiated regulation goes through in half the time it took the Swiss and even if the rest of the world are unfailingly kind to LITTLE Britain.

Even then, we are totally and utterly screwed.

And that's why I'm angry. Not just because I'll have to commute to Europe.

Not just because we might lose several of our staff members.

Not just because it directly affects me.

Because it's not about immigration. It's about you, your families, your children.

When all this chest beating is over, what will you be left with? Not much, but what you do have will be far more expensive.

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BADD2016: Keyboard navigability as power not just accessibility

2016-05-01T20:08:23Z

Blogging Against Disablism Day 2016

I want to talk about disabled-gain.

Over the last 8 years I have had the privilege of working closely with two different colleagues who access computers in a slightly different way from the majority of people. They are screenreader users which means the computer tells them in voiced words what is going on. Instead of pointing and clicking at visual things with a mouse, screenreader users usually use the keyboard, by learning and utilising many shortcuts.

In 2009 I experienced difficulties with my main mouse-hand which means I have to be careful about how much mousing I do. I had always been a fan of keyboard shortcuts and used them as much as possible when I could find them out from getting my first graphical computer in 1993 (Mac OS System 7.1.1 for the nerds out there). I knew that once my mousing became limited I had the option of copying one of my colleagues to increase my use of keyboard shortcuts.

I learned a few new shortcuts each day and would ask my colleague what the shortcuts were for tasks I did regularly. My favourite trick is to build complex tables in word documents entirely by keyboard - that always gets a wow out of anyone watching me do it. I am now doing about 80-90% of my navigation of Windows by keyboard and continually working to get it to 100%.

I am not just mitigating the impact of a functional impairment, but have become empowered to work more efficiently and speedily as a result. Disability gain!

Many big tech companies are catching on and building accessibility into their core product realising that disability is not rare or special, but is common, normal and accessibility features can empower users.

Google: https://www.google.co.uk/accessibility/all-products-features.html

Facebook: https://www.facebook.com/help/141636465971794/

Twitter and Facebook: Press ? and keyboard shortcuts will be displayed

Microsoft Windows: http://windows.microsoft.com/en-gb/windows/keyboard-shortcuts#keyboard-shortcuts=windows-8

Apple's MacOS: https://support.apple.com/en-gb/HT201236

Dreamwidth: http://wiki.dwscoalition.org/notes/Accessibility_features_in_Dreamwidth

We still have a long way to go, many products and cloud-based applications are not keyboard navigable which means that they disable me and I am unable to use them. I have learned I am not the problem, they are.

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DSA cuts for 2016 - summary/upate

2015-12-03T22:06:01Z

What is this Non Medical Helper business?
In DSA 'support workers' are called "non medical helpers" to distinguish from people who provide "personal care" which DSA does NOT do. DSA non medical helpers can ONLY assist with academic support.

Non Medical Helper Roles
Two years ago non medical helper roles were put into bands 1-4 + exceptions based on things like cost, job spec, requirements etc.

The full "non medical helper manual" as a PDF can be found at http://www.practitioners.slc.co.uk/media/6192/non_medical_help_manual.pdf

Non Medical Helper "roles" which deaf/deafblind people may use
* Manual notetaking - Band 2
* Electronic Notetaking - Band 3
* BSL/English Interpreters - Band 4
* Language Support tutors - Band 4
* Teacher of the Deaf - Band 4
* Sighted guide (deafblind) - Band 1
* Practical Assistant (deafblind) - Band 1
* Study Assistant (deafblind) - Band 2
* Lipspeaking - exception
* Speech to Text Reporting (STTR)/Palantypy - Exception
* Specialist Deafblind communication worker - Exception
* Braille transcription - Exception

What is this latest news about?
The NDCS tweeted their concerns about DSA cuts at https://twitter.com/NDCS_UK/status/672483147251130368 with a link to http://www.theguardian.com/education/2015/dec/02/government-to-cut-funding-disabled-university-students-jo-johnson

As of 2016-17 academic year (next September) the government will no longer fund non medical helpers in *bands 1 and 2.* They only delayed their plans by a year because of legal action and while they carried out a "consultation".

This means that manual notetakers and proofreaders won't be funded by DSA anymore. Universities are expected to "reduce need" by being more inclusive, or in the case of deaf students, fund the those roles themselves.

British Sign Language (BSL)/English interpreters, lipspeakers, STTR/palantypy, electronic notetaking, language support and other band 3-4 roles will STILL be DSA funded (for now).

If you are worried or want more personalised advice
Contact your prospective university's disability services for specific advice as it is impossible for anyone to give generic advice and please be aware the government is changing policy and practice on universities constantly so sometimes things will change.

What I think is more worrying
Recent changes mean ALL non medical helper roles require TWO quotes. The cheapest is always chosen. A named provider has to be agreed. This makes it difficult for freelancer to be chosen as needed and is also difficult with lipspeaking, Electronic Notetaking and STTR and BSL/Eng terps where there aren't many and costs can vary because of high travel costs etc.

In University experience really helps. An interpreter with 5-15 years of experience will usually do a better job than someone who is new. An experienced interpreter may cost more than a newly qualified one. If the student says "this cheap interpreter isn't doing a good enough job, I need more-expensive interpreter who is more experienced" who will cover the difference in cost as the government doesn't recognise "quality" or "value".

Government is trying to identify minimum standards for each non medical helper role. I don't think they understand deafness, so don't understand the difference between Level 6 BSL and Level 6 BSL Interpreting qualifications for example.

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How I manage requesting STTR Communication Support

2015-06-23T23:17:44Z

I use Speech to Text Reporting "STTR" as my preferred communication support in some situations.

STTR allows me to
1) Use my residual hearing with hearing aids and lipreading to get what I can from speakers.
2) Benefit from my fast reading speed and excellent memory for things I have seen in text.

Successfully getting STTR provided by organisations, conferences, events etc can however be challenging as:

People often don't know what STTR is or how to book it.

People ask repeatedly if a "signer" is needed instead and when told "No, STTR is needed" refuse to listen or believe the only communication support they can arrange for deaf and HOH people relates to sign language.

Non-STTR support options like respeaking or electronic notetaking are booked instead and described as STTR.

People believe deaf/HOH people who don't sign fluently can't be deaf enough to need communication support.

Organisations simply don't respond to the request and ignore communications about it.

Large government organisations like DWP, HMRC and the NHS are all guilty of many or all of these; as are a a maddening number of "disability" organisations, who really ought to know better.

Don't get mad, control the situation
So when I request STTR I try to give the person I am contacting everything they need and guidance on how to do it right by sending something like the following

Dear Organiser/organisation,

Re: $EVENT on $DATE at $LOCATION

Please can you arrange Speech to Text Reporting (STTR) communication support for $EVENT so that I can access it as I am deaf. In case you haven't heard of it, an excellent explanation of what STTR is can be found at http://121captions.com/communication-support-speech-to-text/.

I believe in-person STTR is likely to be most appropriate in terms of reliability and quality of support. Due to the length of the event it is likely that two STTR operators will be needed to co-work together. The STTR operators need to be registered with the NRCPD at http://www.nrcpd.org.uk/.

Alternative communication support such as Electronic Notetaking, British Sign Language (BSL) or Respeaking are not acceptable substitutes for my access needs. It is important that it is STTR that you provide.

There are two main ways you can arrange reliable STTR support:
1) The easiest is to contact my preferred agency $AGENCY on bookings@$AGENCY.com - their website is www.$AGENCY.com. I recommend this agency because they prioritise reliability and quality of provision and communicate promptly and effectively with clients.

2) Another way which involves you doing more work is to go to the Association of Verbatim Speech to Text Reporters (AVSTTR) website at http://avsttr.org.uk, click on book a reporter link and provide the details of $EVENT.

It is important that you start the process of booking STTR as soon as possible because it can be difficult to arrange support with less than $TIME notice.

I am happy for you to tell either $AGENCY or AVSTTR that the job is for me by name as $AGENCY and many STTR operators know me well.

At least 3-4 days before $EVENT the STTR operators and I will need draft copies of any slides and any materials which outline likely vocabulary so that appropriate preparation can be made. Good preparation materials hugely increase the speed and accuracy of an STTR's captions.

At $EVENT itself the STTR operators will need to be provided with at least 4 power sockets near to their seating; height-adjustable chairs without arms and a table to hold the captions-screen on it for me to read. It is usually best to place the STTR ops and me towards the front of the room in such a way that I can see the main speakers and the STTR screen. If you have access to a large screen ensuring the STTRs can connect to it via VGA cables makes the captions available to everyone. STTR operators are usually able to advise on suitable locations or I can arrive early and help too.

Please can you reply to me as soon as possible letting me know which agencies or STTR operators have confirmed a booking to provide STTR for this $EVENT. If you have any questions or concerns at any time, please do not hesitate to let me know.

I look forward to hearing back from you.

SIGNOFF

Emails like the above often work well. It gives organisations an opportunity to do it right or talk to me about any problems they have while there is still time to resolve them. Sometimes I suspect an event which is unfunded and low/free entry can't afford STTR so I'll ask them to let me know if they are unfunded and use my AtW budget but I have to try first to be allowed to do that.

Where an organisation claims they will meet my access needs I have learned to not trust any standard-email sent to all delegates claiming access requests will be met or anything short of a confirmed named STTR/agency booking. If concrete information is not forthcoming I have to chase it as that's a sign screwups are happening.

Where I don't get a response to my access-requests or STTR (or other adjustments) are not provided I need to remember I am entitled to complain and if necessary make it clear that the organisation is in breach of their Equality Act duties to make reasonable adjustments for me.

As both Rob and Melissa reminded me tonight on twitter a lot of this is basic customer service! I sometimes forget that I'm entitled to that as well.

Random question - do BSL users get given the 'wrong' type of communication support such as lipspeakers and STTR?

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Report: Complicated? Bi People's Experience of Services (Review)

2015-05-27T19:00:05Z

What is the Complicated report?

Equality Network in Scotland have just released a new evidence/research based report called "Complicated?" about bi people's experiences of service provision and suggestions for improvement.

A summary of the report's aims and info about it + how to obtain hard copies is at http://www.equality-network.org/resources/publications/bisexual/

The full report is at
http://www.equality-network.org/wp-content/uploads/2015/04/Complicated-Bisexual-Report.pdf

My quick review

I think the authors have attempted to keep their language simple and
straight forward and it is structured in a logical manner. If the
full-report is daunting then I'd recommend reading:
* Pages 6-9 the summary + ideas and
* Pages 62-64 are conclusions and suggestions

Lovely intro by Meg John recognising the gaps and and things The
Bisexuality Report from 2012 didn't fully-cover which are improved
somewhat in Complicated.

The first few pages are summary findings including specific mention of
multiple-discrimination, minority ethnic and disabled people's experiences.

Page 8 is a "roadmap" to bisexual inclusion with specific suggestions
such as research, language "LGBTetc not gay" "same-sex XXX not gay XXX".
Remember include biphobia as specific thing to deal with. Access and
update training. Celebrate bisexuality with advice about not labelling
historical figures unless they used them themselves. Make sure bi people
are included in events and be willing to mention bisexuality in things.

Introduction discusses realities of terminologies and definitions and
some content note to references to sexual violence but no descriptions.

Methodology discusses how the research was carried out and
challenges/limitations of bisexuals as a sample size of the wider
population. 720 people responded but only some responses were valid
within scope leaving 513 usable responses. Explains formatting choices
for accessibility and that feedback was sought and acted upon from
BiReCon 2014.

Demographics goes through age, where people live, ethnicity,
religion/belief, disability, gender identity, trans, sexual orientation
as self-described as it may not match behaviour (with a chart to show
terms used and values).

Findings reviewed each question such "How much do you feel part of a"
* Bi community
* LGBT community
* Heterosexual community
+ quotes and breakdowns

Then discussions around
* Feeling able to share their sexual orientation
* Experiences of using services inc nifty diagram of biphobia!
* Experiences of biphobia from services + specific examples
* Experiences of LGBT services (25% experienced biphobia!)
* Impact of other kinds of discrimination on biphobia (+ recognition of
some groups being under represented)
+ Info broken down and discussed.

* Examples of good inclusion
Inc NHS, Sexual Health Clinic, Police, LGBT services,

"Ideas for improving services" around page 55ish is very good.
- Age, socio-economic class and race/ethnicity all highlighted as
under-reached and under represented.

Conclusions on page 62 noted that when "shocking" examples were
mentioned to bi people during consultation/feedback many people said
these had happened to them too so was "not unusual or surprising".
Recognise the report findings may be under-representative and need to
talk about what has been found outside of bi spaces in ways like this
report. Also discussed impact of not feeling connected to any
communities and that change doesn't have to be expensive or onerous.

The report then ends with links to key UK bi groups, a glossary and then
the bibliography with full citations of sources cited with website
address is available or a note if it is not available online...

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Biphobia is just a joke - complaint to Guardian and IPSO

2015-04-03T11:11:25Z

Complaint to Guardian about article
Dear Reader's Editor,

I would like to raise a formal complaint about Sophie Heawood's article of 2nd April 2015 at http://www.theguardian.com/lifeandstyle/lostinshowbiz/2015/apr/02/james-franco-gay-up-to-a-point

My complaint is around biphobia in the form of disbelief, mocking and assuming the right of judgement about a person's sexual orientation.

Sophie Heawood in her replies to me on twitter claims she finds it funny that James Franco appears to change what sexual orientation he identifies with. She then goes on to claim that James Franco is chopping and changing his identified sexual orientation to look cool as a celebrity. This "to look cool" accusation is a hugely prevalent form of biphobia and is one which many bi people have experienced as a form of erasure and dismissal.

This ideas that anyone other than an individual gets to judge their own sexual orientation at any given time or that they should have to perform to expectations of that orientation are all forms of biphobia.

Biphobic articles in the media contribute to a devaluing of bisexuality as a valid sexual orientation and increases the lack of safer spaces for bi people to come out to themselves or others. This causes real harm as shown in research about bi people's mental and physical health outcomes.

I'm not the most articulate person to write about this but I can recommend that Sophie Heawood and the editor who approved this biphobic article read:

Bisexual Index's article and FAQ about what biphobia is
http://www.bisexualindex.org.uk/index.php/biphobia
http://www.bisexualindex.org.uk/index.php/Bisexuality

For credible evidenced research of the harm caused by biphobia in society I recommend The Bisexuality Report from respected researchers at the Open University at http://www.open.ac.uk/ccig/files/ccig/The%20BisexualityReport%20Feb.2012.pdf

I will be sending a complaint to the PCC on the grounds of 12i) pejorative reference to an individual's sexual orientation.

I would like a response to this complaint. I think the Guardian owes bi people an apology published prominently in the Guardian and above this article acknowledging the biphobic nature of it and recognition of the harm it causes.

I look forward to hearing back from you.

Best regards,

Natalya

Complaint to IPSO (Independent Press Standards Organisation)
I used their online form but I believe the article breaches Clause 12 Discrimination part i.

i) The press must avoid prejudicial or pejorative reference to an individual's race, colour, religion, gender, sexual orientation or to any physical or mental illness or disability.

My extra wording in the ipso form was:

"The entire article is premised on the idea that it is acceptable to judge, mock and make homophobic and biphobic remarks about someone's celebrity. The author accuses the subject of the article, a celebrity James Franco of "calling himself bisexual to look cool" and describes him as a "bollockless bisexual". Judging whether someone is bisexual enough is a well understood and researched form of biphobia.

The whole article is pejorative about the subject's sexuality which is discriminatory in itself. It is a very common experience for bi people like myself to be accused of "only being bi to be cool" as a form of erasure and discrimination. "

No idea if they will take me seriously but...

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AtW Cap & changes: You're too expensive!

2015-03-14T22:40:13Z

A few days ago a sudden announcement by Mark Harper minister for Disabled People appeared. It outlined some changes to Access to Work (AtW) the government scheme to assess and fund some of disabled people's support needs in the workplace in order to include us fully in society.

£1 into AtW = £1.48 out to economy
Before I criticise this latest cut to AtW - it is important to keep in mind that in 2005 government research showed that for every £1 spent on AtW that the treasury found the economy benefited by £1.48 due to disabled people being able to contribute to tax compared to having to claim unemployment benefits and other people being employed to work for and with disabled employees.

The two main concerns I have are:
1) The £40,800 cap on AtW awards per year.
2) The linking of eligibility to AtW for self-employed people to Universal Credit rules.

The cap, who it affects and why
The cap will affect less than 1% of AtW users who need the kind of support which cannot currently be entirely or reliably provided by technology to do their work to a high standard like a non-disabled person.

This is likely to be some Deaf/HOH people needing high amounts of "communication support" including:

British Sign Language (BSL)/English interpreters,

Speech to Text Reporters (STTRs),

Lipspeakers,

Electronic Notetakers
(Unless specified "communication support" in this post means any or all of these).

This will also affect disabled people with severe or multiple impairments who
may require a variety of solutions which cost-wise add up to more than the cap.. Deafblind people for example might need communication support AND other support such as travel.

Communication support - why is it so expensive?
It isn't just anyone who can provide high quality communication support for deaf, HOH and deafblind people. Training to become a communication support professional takes 5-10 years with them having to meet high language and accuracy standards. Suggestions in the announcement that the government will implement translation services frameworks are worrying when various professional communication support workers' groups believe the standards will be forgotten in order to cut costs.

I personally have had cheaper services provided to me instead of STTR. BSL users often get fobbed off with people who have no BSL/English interpreting qualifications and sometimes almost no signing skills. Deaf people are often ignored or dismissed when we try to explain that the "professional" that has been booked for us is not appropriate. It is vital that the quality of our professionals are not dumbed down.

There are fewer than 25 STTR operators and 25 lipspeakers in the UK so they often have to travel and stay overnight in hotel accommodation to work for their clients. Deaf BSL users in rural areas may live some distance from their nearest BSL/English interpreters. These factors both add to the cost. It is really only people living in London who don't regularly have travel as an issue. I'm in Birmingham and my nearest STTR ops and Electronic notetaker is 90-120 mins away.

It's 2015 can't Communication Support work remotely over the internet
There is also a fear that many deaf people will be pushed to use cheaper remote services. There is a place for video relay for BSL or remote STTR and electronic notetaking but they are only appropriate for some situations and quality can be reduced. I doubt it is even possible to do lipspeaking or hands on signing remotely.

Remote BSL/English and STTR also have issues of managing the technology at the user's end:

Getting high quality audio from the speaker to the communication professional via fast/reliable Internet connection.

A way of viewing the sign or captions that are produced.

Sounds simple? Despite being a techie I haven't yet worked out how to do remote STTR reliably!

Remote service provision also has latency issues, ESPECIALLY when using cellular Internet connections:

Time for audio from speaker to reach communication professional

Time for video or captions to reach the deaf person

An extra second or two doesn't seem like much, but it makes a huge difference to the intelligibility and ability to follow the speech in real-time.

I can't comment heavily on remote BSL services but signing friends say they are much less good and they should be listened to!

Deaf people need to be able to use their strongest communication method
I am also worried that as STTR is more expensive per hour than BSL that in future people will be pushed to use BSL even if sign is not their strongest language. Or when it seems more convenient to use text methods that BSL users will be expected to use them instead of BSL.

Can't you just get the hearing folk to type?
I also know of deaf people pushed to use a "manual typing system" which requires colleagues or clients to type to them. Most deaf people can and will use typing or writing at times to overcome hearing people's inability to communicate in BSL or with clear lip patterns, but it's low quality communication and is not appropriate for anything other than basic conversations!

Most people speak at around 200 words per minute but even professional typists can only type at around 50 words per minute. In my experience most hearing people type REALLY slowly which is boring! BSL is an entirely different language from English, which is why we have BSL/English interpreters.

Self employed - you'd better not be part time, or have a low income if you want Access to Work!
The linking of self-employment Access to Work funding with Universal Credit sounds good in words alone, but this becomes linked to minimum hourly earnings and minimum number of hours worked in the self-employment. I don't really know much about this but Alison writing as deaf on twitter and Facebook has written more about this and I've tried to do a bit of reading myself but honestly got lost in Jobcentre Bureaucratese.

It seems that Universal Credit has a number of issues which Johny Void outlines. If you're not earning enough in your self-employment you will be deemed to not be working enough hours and forced to deal with jobcentre hideous disablism and become ineligible for Access to Work. I also don't know how this is going to work for disabled people who have part-time businesses and used to be able to get AtW to assist them in equality for those.

Universal Credit and Personal Independence Payment
Some deaf and disabled people will get Personal Independence Payment so may be OK with AtW and eligibility but others such as those who are just deaf often can't get Personal Independence Payment so will have to work more hours to get the same eligibility... How is that fair?

Sacrifice the few for the many - apparently
The narrative around this 1% is that the needs of the few are being sacrificed to free up money for "mental health interventions" and the "many" rather than more money being put into services to focus on mental health support systems.

ETA: I don't know if those affected by the Universal Credit eligibility rules means that those affected is higher than 1%. I suspect it is. I will try and find data/%.

This narrative relies on people thinking £40,800 is a lot of money and that it's not unreasonable to have a hard limit or only support those working 'full time'... I think this is also a focus on people whose support needs can be resolved with one-off interventions and a narrative that anyone who needs ongoing support is "too demanding" "too needy" "too expensive" and "can no longer be afforded". This was already covered in the Snowdon Trust's 2013 A shared view survey report about Disabled Students' Allowances caps which have very similar issues to the AtW ones.

This announcement changes Access to Work from principled equality to a cost-prioritised system where equality is conditional. There were legitimate requests for an arbitration panel to cover those people with high-cost awards as there might be very good reasons such as multiple-impairments, or high demand jobs like being the leader of an organisation so having long hours and high costs but this seems to have been ignored. There is no right of appeal from Access to Work as it's not a right or entitlement but reframed as a "benefit" which is claimed by shirkers and scroungers!

As a deaf and disabled person I am SICK of being told: "you are too expensive"!

I'm not directly affected now/yet, because I only need occasional STTR at the moment but I am already feeling scared to push my career in directions of my purported-strengths because I fear I won't be able to manage and sustain the communication support that I will need to perform to a high standard and not become ill from audio-overload. It would only take 12 hours a week of remote-STTR or 6 in-person STTR for me to max that cap.

And don't believe for a second most employers can afford, or are willing to pick up the remaining costs - cos they won't. Employers already discriminate in recruitment of disabled people and this will worsen. Where a disabled person is employed they will be told they can't have the support, have to use cheaper/inferior alternatives and not have the support they need to perform to their best ability. Disabled students sometimes have to use cheaper/inferior alternatives now due to DSA caps. AtW caps will further limit deaf and disabled people's ability to develop and progress within the workplace!

I have written to my MP this evening to ask him to challenge the government about this and at least bring back in an arbitration panel for people who feel the decision is unfair but I honestly don't know what else I can do other than ask others to write to their MPs and the DWP.

Do we need to ask for an impact assessment here? Can we challenge this legally? Judicial review somehow?

Other reactions to the Access to Work cuts in no particular order
British Deaf Association (BDA) (BSL + English): https://www.facebook.com/video.php?v=868566606538995

Alison Bryan (English): http://www.twitter.com/deaf

National Deaf Children's Society (NDCS) (English): http://www.ndcs.org.uk/for_the_media/press_releases/statement_in_4.html

Disability News Service (English): http://www.disabilitynewsservice.com/access-to-work-plans-for-new-cap-on-awards-is-huge-concern/

Stop Changes to Access to Work (English): https://stopchanges2atw.wordpress.com/2015/03/12/stop-changes-to-access-to-work-response-to-ministerial-statement/

Neil Crowther (English): https://makingrightsmakesense.wordpress.com/2015/03/12/a-cap-on-talent/

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#BiStonewall 7th February 2015 Consultation Day

2015-02-16T20:21:25Z

Natalya's Writeup of #BiStonewall 7th Feb Consultation Day

I would like to thank: The other bi people who attended, both those I knew and those I didn't - I am glad there was a mixture. The trans people who tweeted and wrote about the trans consultation process and those who fought for a similar one for bi issues. Stonewall, especially Ruth Hunt, Caroline Ellis and Ayaz Manji for making the event run so smoothly.

Sections of this writeup
Consultation Context
Structure of the day
Ruth Hunt from Stonewall explaining and apologising for past Stonewall bi-fail
Topics for discussion
Discussion of topics
Feeding back from discussions
Final session and next steps
My conclusions and next steps

Other #BiStonewall Writeups

Marcus from Bisexual Index
Nick Gomez of EQView LGBT magazine
Jacq from Bis of Colour
Elizabeth Baxter-Williams' Biscuit Magazine brief writeup

Twitter #BiStonewall

Consultation Context

In contrast to the #TransStonewall consultation(s) there wasn't any question of whether Stonewall would include bi people or not; they have already claimed the B. The question therefore was and remains: Are Stonewall willing and able to include and represent bisexual people and communities with us or without us...

I wasn't alone in my concerns. Stonewall is HUGE (in scope/reach if not pure size) and often it feels like the bi communities which I am a part of, are tiny. There are also many bi people who don't identify as such or participate in "communities" of a clearly defined sort but are still out there, needing and deserving accurate and appropriate representation.

My second thought on hearing about the trans consultation after "good for them [trans people]" had been "where's OUR consultation, damnit!" so it was a nice surprise to see Stonewall inviting bi people to book ourselves onto this one day consultation.

Places booked up quickly and I suspect Stonewall were a little surprised by the level of interest and indeed the level of unhappiness in pre-event materials submitted to them about Stonewall and bi.

Despite positive comments by those who attended, there are many bi people who remain understandably wary about all of this.

Structure of the day

In order to ensure every one of the 35+ delegates had some chance to contribute and knew that listening was going to be vital the day was facilitated by Caroline Ellis a Stonewall director. Proposed Agenda Item 1 was discussing and adapting some proposed flipcharted guidelines on how we would all agree to behave.

Caroline's firm facilitation went a long way to keeping the consultation as deaf-accessible as an event this audio-heavy could be. She wasn't afraid to call us all back to the agreed-guidelines to keep discussions fair and on track.

Attenders chose seats at semi-circle shaped tables facing the front of a bog-standard conference room. Each table sat between 5 and 7 people. I did the usual deaf-swot thing of grabbing a seat at the front which happened to be with some people I knew well, some I knew a little and one person I hadn't met before. The day was mixed between listening to Caroline or Ruth speaking from the front, small discussions in our tables and then feeding back to the whole room. I used a radio aid on conference mic mode which really helped me hear what was being said.

Stonewall bi staff attending in their own right

Stonewall invited its own bi staff to attend as bi-people in their own right. A lot of thought had clearly gone into how to disclose their presence amongst us ethically. Each of the five or so staffmembers stood up at the same time so we could see them scattered around the room. They were introduced by name, role and location and by clear pre-agreement said a few words for themselves if they wished.

It was made extremely clear to us that Stonewall bi staff were not to be held responsible in any way for past-bi-failures. This disclosure enabled us to benefit from their unique experience while knowing to be careful about how we might frame things in the context of their multiple-contexts.

Stonewall explaining context and apologising for past-bifail

Ruth Hunt, new CEO of Stonewall talked for half an hour about Stonewall's creation, history, focus and context around bisexuality.

Stonewall was set up as a lobbying organisation in the late 1980s to campaign for law change such as anti-section 28, equalisation of the age of consent, "gays" in the military and so on. Stonewall does not and has never provided services. Stonewall has tripled in size in the last few years and in many ways has been less organised than one might expect which is why Ruth as CEO is already implementing a number of internal changes around processes and structure.

I was amused to find that no one seemed to know when B was included in Stonewall's remit. This was something attenders had attempted to research. The charitable objects only refer to human rights but the activities refer to lesbian gay and bisexual. A brief discussion concluded that B probably got added during the becoming a charity process in 2003. It was commented that the B wasn't mentioned on the Stonewall Xmas card till 2008...

Bi-fail acknowledgements and explanations

Ruth Hunt outlined on behalf of Stonewall the biggest areas of I will call bi-fail and provided an explanation for each whether that included an apology and recognition of actual wrong/harm done; genuine "cockup" or what Stonewall may have decided was a reasonable justification at the time, or indeed continues to be justifiable. We delegates did not always agree with these justifications and some of us felt able to say so both in person and on twitter (#BiStonewall).

One example was whether bisexuality is too complex to include in some situations and the difficulty of saying nuanced things while under time or word-limit pressure. We disagreed quite strongly and some solutions to this including examples of simple and nuanced language were suggested. There was also some discussion around institutional biphobia where I think Ruth meant that Stonewall isn't resistant or unwilling to improve on bi inclusion, but initially misphrased it as "stonewall isn't institutionally biphobic" which is something different entirely - twitter enabled Ruth to come back to us and rephrase/frame things better. I feel these areas may be where we consultees may have already initiated a change in Stonewall's thinking and hopefully acting in the future with some input from bi experts.

Another examples of bi-fail identified an instance of publicity where the heading was bi-inclusive but the content beneath it wasn't. Original cause of the error was cockup but then the promised-to-one of us fix who had met with Stonewall about it (and other things) hadn't happened either which had further-dented bi-trust in Stonewall. The Stonewall organisers didn't deny this was fail and I hope after this mini-discussion about the impact and untrust caused will actually manage to fix the online-copy soon/nowish because this would be a small but critical step in trust-building.

Ruth was very honest that mistakes are still going to happen as no process of improvement is immediate and it is important to have realistic expectations all round. Seeing how Stonewall plan to deal with mistakes and fixes will be interesting.

Similarity of lived experiences

It was also apparent that Ruth has done her share of Aaaaaand women... and Aaaaand lesbian(s).... and knows the feeling behind the 'yet again' *sigh* and cost of sticking her neck out.

Last year Ruth wore a "some people are bi get over it" teeshirt at London Pride. I don't think this was the bi-equivalent of a fat-suit; I believe it was Ruth making a public statement that she means-it about making Stonewall becoming better at bi. In wearing this teeshirt I think Ruth expected to get some biphobic abuse, just not quite as much as she did. I felt Ruth was clear that she didn't want to appropriate bisexuality/biphobia (although biphobia by association exists) but recognising that biphobia, especially in lesbian and gay spaces/communities is a significant and nasty problem.

By working to include bi (and trans) people, some of Stonewall's traditional supporters may not be very happy and a challenge for Stonewall is to not destroy its support-base while keeping bi people and bi communities happy.

Stonewall focus: "Right to be YOU"

I especially liked Ruth's discourse around Stonewall's change of direction in campaigning to a focus of right to be you. It's clever, short, catchy and inclusive as youness includes a variety of things. Ruth linked this to the impact of not being able to experience the whole of your self-hood leading to harm, damage and illness to the individual and how Stonewall has been part of that limiting-experience of youness for bi people in the past.

Discussion topics

After a break we looked at some potential areas for discussion. Stonewall had proposed an initial 6 or so topics/areas which I think were:

Health including mental health
Employment
Education
Asylum and immigration
Bi-visibility
Biphobia

I immediately noticed housing and homelessness wasn't listed. My table also noticed that race and ethnicity weren't mentioned. We also discussed the idea of power, accountabilities and consequences of us vs Stonewall "Is there any point in all of us investing emotional and physical energy in this consultation process if Stonewall could just keep ignoring us?".

The tables then fed-back a number of extra items which were added to "topics for discussion" list including:

Housing and homelessness
Race and ethnicity / BME / racism
Older people
Younger people/youth
Faith and belief (linked to BME in many ways)
Media
Families and children
Geographic urban vs rural (there is life outside of London)
Poverty and austerity & social class
Power and accountability

This bought the total to 15+ topics - some which overlapped a bit.

I am still not sure if we tried to discuss too much or if it would have been more problematic to not discuss everything raised. We still didn't discuss everything; disability (outside of HIV/mental health) wasn't really covered; class was only touched on and I don't think we covered enough about such a huge topic as media. Bi-visibility and biphobia were discussed being more over-arching and different from the other topics.

I believe Stonewall's original intention was that "intersectionality" sort of over-arched every discussion topic. I think it was right to break intersectional-specifics out because as a group of largely privileged white, middle-class, people it is too easy for us to avoid the perceptually difficult intersections such as race and class. We need to be much more proactive in identifying that some groups are singly and multiply more disadvantaged than others and that aspects such as race or age plays an inextricable part in that.

After some discussion - each table was then given 2 topics + an overarching theme of either biphobia or bi-visibility.

Discussion framing

It was only at this point that the context in which Stonewall wanted information was made clear. We were asked to take our topics and try to answer the following questions:

What could/should Stonewall do?
What could be done collaboratively between bisexuals/bi community and Stonewall?
What should Stonewall not do.? (This was quickly clarified to be about "not treading on toes for" such as "Stonewall shouldn't run BiCon")

I feel it would have been better to have had these framing questions first and THEN identifying the topics which might have avoided some pointless tangents and confusion. I'm not sure much of what we discussed or fed back fit this structure.

Discussions

Several people on my table were struggling to hear in the main room so they persuaded me that we should decamp to the outside refreshment area - I think I had got to the stupid-stage of audio overload. Some of us also decided to take a mini break at this point even though lunch was only 25 minutes away.

My table's topics were:

Language around gender and sexual orientations
Race, ethnicity, BME, racism
Biphobia

Unfortunately we missed the pre-lunch information as no one told our group that the discussions had stopped for lunch. We were a little hurt by that, but perhaps we should have asked Caroline explicitly to come and get us rather than assuming she noticed/knew where we had gone.

Lunch

Lunch was an hour long. The food was very good and clearly labelled for content such as dairy, gluten, meat/fish etc. There was plenty of it and the serving staff were friendly and nice. Informal plans for networking didn't work as the area announced as mingling was reserved for another organisation's event.

I chatted with some people I knew for a few mins while I ate before taking most of the lunch hour as "time out" to try and reboot my brain a bit. Annoyingly my netbook wouldn't speak to the WiFi so I spodded on the smartphone instead. I later joined a group of people chatting about the morning before the afternoon sessions restarted.

Discussions continued

One of the things we tried to do was get a coherent set of notes for whoever would feedback to the group. We had sort of gone off on tangents and some of our group had gone to wander or do other things as was perfectly permitted.

One thing I regret was that one person on my table had to mention that many of us were staring at them whenever black people or blackness was mentioned. I hadn't realised I/we were doing that until it was pointed out which is fail on my/our part. Talking afterwards with another attender they said it was helpful to see that request as they realised they had unintentionally been doing the "stare at person who raises X whenever X is mentioned" to someone on their table about a different intersectional-identity. I have made a note of it as a useful top-tip on "what not to do" in general for outlining 'safer' spaces. It is being added to my "people do this, recognise this and don't do it" collection for my 2015 BiCon how to be a bit less racist at BiCon workshop.

By the end of this session I noticed several people struggling, the emotional and physical of the day were considerable for everyone. I was grateful for the break between feeding back and the final session.

Feeding back

Each table fed back in turn about their discussion outcome. This was probably the hardest part of the day for me as hearing multiple people across a room is plain difficult. I was impressed by how people did recognise where their issue had been discussed and skipped past it. Ruth was typing away on her laptop to get the main points. It is notable feedback points didn't get tweeted in as much detail as the best real-time tweeters were also running low on spoons/energy.

I have several pages of notes but I'm not sure how much is confidential or not so I don't want to get into details. Much of it was about Stonewall not taking credit for our work (which they clearly understood); using our expertise (and paying for it sometimes!); supporting and promoting bi events (and making sure we're not asked to pay commercial rates!); representation and inclusion including designating space for under-represented groups; recognising where Stonewall may need to include people in mixed-gender relationships to be bi inclusive; awareness of specific intersectional issues such as Bi people of colour being most likely to experience housing issues and poorest health outcomes and being aware that it may take some time for bi people to feel they can trust Stonewall and some people may never be entirely comfortable so separation as well as collaboration between bi groups and Stonewall may remain essential for the foreseeable.

Someone came up with the term "mono-splaining" where people (of presumed monosexual orientation) explain to bisexual people what bisexuality is.

I don't know if the phrase "nothing about us without us" was used, but the concept came up a lot.

Final session - Next Steps

After our feedback Ruth Hunt used her superpower of taking verbiage and turning it into concise and coherent points She outlined some examples of possible collaborative options and ideas; ways which Stonewall could help bi communities and events; bi people and experts could work with Stonewall longer term and more.

The next steps from Stonewall are:

Information from session including flipcharts, Stonewall's notes and anything else will all be collated.
Draft summary report sent to event attenders only (we're asked to keep this confidential) by Easter-time with several weeks given for us to give feedback to Stonewall. (longish timescale because of Stonewall's overall workload and as of last week they hadn't finished the trans report yet).
Stonewall will publish a final report in ~Septemberish including:
- Acknowledgements and apologies for past bi-fail
- Aims and hopes for the future for Stonewall and bi-stuff
- Steps that need to be taken to achieve aims
- Timescales for achieving aims
- What Stonewall isn't willing or able to do

Further consultations

Stonewall are actively seeking feedback from bi people, organisations and communities by email on bi@stonewall.org.uk and at other consultation events over the coming months.

I might suggest Stonewall create a webpage outlining what they want and what they will do with info so people like myself can link to and promote the canonical source. (I haven't found one from quick n dirty Googling)

My conclusions and next steps

Even 10 days post-event as I've been working on this writeup I feel cautiously optimistic and hope that Stonewall can make-good on the small trust building steps they've committed to (I've seen evidence of at least one immediate promise being kept) as well as continuing to run this consultation as well as the trans one seems to have been. I feel they are open to negotiating a friendship with bi people and communities.

The consultation event itself wasn't as inclusive as any of us would have liked it to be. While Stonewall had tried to invite bis of colour for example, this hadn't been enough to make many bis of colour feel it would be a safe enough space. Having separate consultation groups is one way saferness might be achieved but there is some-way to go in trust building with different parts of bi communities. Just like bi communities ourselves still have a long way to go earning trust of some people of colour who we have hurt (and still continue to hurt, even inadvertently) by our fail.

My feeling from listening to Ruth throughout the day was that she engaged constructively with criticism. I could often see her thinking during discussions and responding with consideration and respect to those who raised challenges and concerns. I felt Ruth respected us and understood that this was difficult stuff for us which in turn made me respect her and Stonewall for trying so hard to do well at this process.

I plan to pick the specifics out of my notes and email them to the bi@stonewall.org.uk email address so they're definitely part of the material Stonewall can work from. I may also try and get to the bi+disabled consultation event(s) as I have a number of ideas and indeed OPINIONS about accessibility that would be REALLY easy for Stonewall to do or indeed NOT do!

I haven't yet read the Stonewall trans-report published today as I wanted to finish my bi consultation writeup first. People are saying positive things about it which is a very good sign.

I wish Stonewall all the best with their next steps in the ongoing bi consultation process - keep up the good work.

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Review & my commentary on "Who are you?" about Deaf people programme

2014-11-07T00:41:52Z

This is my rambly thoughts about the Grayson Perry Who Are You programme episode 3 which is at http://www.channel4.com/programmes/grayson-perry-who-are-you/on-demand/55337-003 until about 2nd December 2014. The deaf bit starts about 27 mins in, after the 2nd ad break.

I'm intrigued by how different people have parsed this programme, both those with some experience of signing deaf people and those who don't. I think Deaf signers can be perceived as more "shouty" than they actually are by non-signers. A hearing friend who doesn't sign has said how he didn't always realise who was speaking whether it was Tomato, Paula or someone else (the terp and that terps don't say anything for themselves in this context) and it wasn't always clear who was saying what and made things very confused. Some visual cueing or better camerawork would have helped with this.

I think overall Grayson has managed to grok a lot of complex issues around Deaf signing identity (and incidentally other deafness and disability issues too) in a very short programme, there was only about 15 minutes of footage dedicated to this segment.

My BSL (rusty level 2 with horrible SSEish grammar) isn't very fluent for pure language vocab/grammar but using the English subs I was able to get the main meaning and use the BSL (where we could see it) for tone, context and personality of the signers. I missed a bunch of stuff hearies picked up from the terp's voice over which I just kinda ignored (I can hear them, but they're not important, the text was better).

I don't like the first scene with whoopy music accompanying the signing deaf people in groups which are filmed in a way which means you can't even parse the sign and it's just hands and faces flapping about. It's like they're trying to do some "they can't hear isn't that strange" effect to match the whoopy visuals of the signing and succeeded in making me dizzy and feel sick...

Nice to be able to watch Paula, Tomato, the children and the other Deaf people signing although I would have liked it if the whole thing was filmed in an easier to follow BSL kinda way cos there were times I couldn't follow the sign cos of camera angles and stuff.

In the audiology scene, I am struck by the audiologist having quite a strong foreign accent and actually being very hard to understand. And how much outsiders Paula and Tomato seem to be in that space, only "referenced" if someone is actually talking TO them. It feels like they're not fully included in that space - they are outsiders - and audiology looking at Hazel (the younger kid) like she's an Alien or something. It feels like the audiologist is describing Hazel in terms that Paula and Tomato don't really recognise. I'll also note how well behaved the older kid Molly is, she sits still eating her snack and is watching watching. Actually so is Hazel, wide eyed, very still, watching. Too many people in the room to do a good hearing test though, too much visual distraction error!

Tomato talking about his experience of audiology was very interesting, it's not one I share. I am fascinating by the inherently hearie-centric "listen hard" type language used to him as a child which he didn't understand. I laughed (wryly) at the epic fail of audiology giving so many visual clues to when they are beeping the beeper - that's a narrative I've heard a lot from many deaf and HOH people as children (including an ex audiologist who was HOH as a child - not sure if as adult too). Tomato talks of being a child having his hearing tested and trying to meet his parents' expectations. The fear and worry about letting them down, disappointing them and how happy they seemed to be when he indicated 'I've heard that' even when he hadn't heard anything, but he recognised that he had pleased them.

I too remember totally knowing when the audiologists were generating the sounds, my mum's facial expression - especially when she could hear stuff I can't, the tension in the room changing, lights reflecting off things and other things I cant name. As an adult I have to consciously shut off the visual cues when having my hearing tested because I already false positive cos of tinnitus which mimics audiometer tones. It's been an interesting experience watching my mum have her hearing tested after sudden onset unilateral deafness last year - we both grin at the role-reversal, my turn to be the observer.

I don't remember feeling as a child when I had my hearing tested that I had to indicate "I've heard" when I knew they'd set off a sound, somehow (I don't know how) it was OK for me to ignore the visual clues and only indicate when I actually heard something. I used to tell my mum I could tell without sound and she suggested I closed my eyes, and sat with my back to the audiologist and or her. She very much confirmed I only had to indicate when I heard the sound and that they should test properly till we worked out where my levels were. I can't honestly remember hearing tests before they used a clicker but I know I had them cos I've got the audiograms from age 3 somewhere.

Then again, my deafness was not a devastation to my parents. I was born with multiple health issues, some of which were very life-threatening for a short while and others which were complex medical issues in a baby and other lifelong disabilities. My parents worked out that I was deaf by the time I was 8 months old despite an ENT doc claiming I wouldn't be deaf without even checking (even tho people with Microtia and Atresia are often deaf!). It was my parents who noticed my deaf behaviours and pushed for a 'diagnosis' as it were. Their reaction upon my deafness being confirmed, especially my mum's was to learn everything she could about deafness. She fought TheAuthorities for access to medical libraries and attended NDCS conferences and did everything she could to understand what a hearing aid would involve and what my experience of it might be like. I need to see if she's still got the letters she wrote to my grandpa with diagrams of hearing aids and explanations of how sound might sound to me. She and my granddad wrote letters to one another discussing sign language but with my hand impairment, ongoing medical stuff and Manchester being a hotbed of oralism they decided to keep that on the backburner... My mum has never been threatened by my learning sign, whether that was fingerspelling as a child or BSL classes when I went to university.

I am intrigued by a partial shared experience of childhood audiology but very different parental expectations transmitted and received by Tomato vs myself. I can see how feeling you've failed your parents is so psychologically traumatic. I wonder how common each of our experiences are in deaf and HOH from childhood people.

I quite like Grayson's brief summary of BSL as a language and focal point of culture - it was very coherent for such a short narration. The segue into the hearing aid covers bit where Grayson shows Tomato's metallic, silver and spiky hearing aid covers was a bit annoying. Grayson photographs these and interprets it as "I am deaf and I am proud". I wonder if that is how Tomato means it, or whether it's something else. I want to steal the design idea - I will tweet and ask Tomato if he minds! My BAHAs would look ace with silver spiky covers. I'm pretty lazy about decorating my BAHAs.

The scene with the friends was interesting, I recognise Fifi who I think is Paula's sister and Paddy Ladd who the older guy with the beard but not the other two people. I absolutely loved what Fifi said "I'm really sorry, Grayson. You're hearing, so I don't mean to offend you, but I feel like we're constantly trying to please hearing people and fit in with what hearing people want. And deaf people have to put up with really an appalling education system, because people can't be bothered to learn to sign." I relate to that as someone for whom oralism could be deemed a success. It is all about D/deaf people making all the effort, we have to listen, lipread, use hearing aids, constantly strain to hear on hearing people's terms.

Sign languages are more on our (deaf people's) terms and hearing people can access it just as much. Tomato chipping in to say that the militants are the hearing people made me laugh out loud. Hearing people in my experience DO only want deaf people to learn how to speak (note not hear, but SPEAK) and not acquire or use a sign language. Why does everyone care how we speak! Paddy chips in to say that deaf people are ignored and neglected, our language (sign language) is neglected. He says that if the group can teach Grayson how important sign language is, they wonder what else they can teach him. Interestingly I know Tomato was bought up Oral as was Paddy. I don't know about Paula and Fifi (I think they might have been oral too based on later scenes) or the other two who don't say anything.

I was a little bit wary of start of the next scene with the Deaf vs Jewish - the two identities were 'set up' against one another. I think Grayson's comment about "history of victimhood" was bang out of order and somewhat bizarre. However this scene was one of the ones which got to me the most. Paula's mum talking to Paula mostly in English with a few signs, she's clearly tried to learn if not very well. It was interesting watching the body language between Paula and her mum, obviously this is an edited clip, possibly a repeatedly rehashed "old argument" with a worn out script but don't all/many families (of origin?) have those.

Paula had a fair few minutes of camera time where she signed very powerfully about how her sign language was her culture and how much it helped her when 'before' (so I presume she's a later learning BSLer?) she was anorexic and depressed. "If I didn't have my language I wouldn't be here" which I wasn't wasn't sure how to parse that, whether as a 'suicidal' type thing, or an identity thing of her personhood was created, expressed and contextualised through sign language.

Sign language helped Paula understand the world and herself better. I'm not a very good signer, I am out of practice cos I don't socialise much with BSLers in person, my arm impairments limit how much I can sign without pain these days and I am crap at putting the work in to bash grammar into my head. BUT learning BSL even to the limited level that I have, is one of the BEST things I have ever done. Within months of starting my level 1 classes my mum commented to me that my confidence seemed to have gone up and far from damaging my hearing or speech as an audiologist claimed it made my speech even better, increased my "tonality" and has helped me with a lot of language. I can relate to what Paula says there to a significant degree even though I am not culturally Deaf and I don't really live much in the D/deaf worlds except a bit online. That's my deafhood too and bollocks to anyone who doesn't like that or wants to diss BSL or my straddling worlds identities.

The bit where Paula tells her mum how much she valued her mum's cultural heritage of Judaism and loved growing up with it, but it being something she can't pass to her children made me want to cry. I had to stop watching this in my lunch hour at work beacuuse "too much emotional blur for work error". I don't know why, but watching Paula say that to her mum and how she reached out to hold her mum and drew her Mum into a hug gets me every time I watch that scene. It's like they struggle to find a shared language, but a hug shows just how much Paula seems to love her mum even though they might not understand one another or one another's point of view all the time. That hug says to me "I love you, I can't be what you want me to be or how you want me to be, but it's not because I don't love you.". It makes me value the good relationship I have with my mum.

That scene was also important cos I think many deaf people exist in a family of origin situation where they cannot be what their hearing parents want them to be, whether that's "able to hear like hearies" "make an effort" or because they have learned sign language which is not a language of the family or one they have bothered/managed to learn. The cultural identities where the children do not share the same expected cultural heritage of the parents, (many) D/deaf, disabled people and LGBTQ people and maybe to some degree religion. Where there isn't that continuity of family parent to child identity I see that strain and perhaps something about creating a family not of origin in a sense of strong communities. Maybe that is why I feel a kinship with the Deaf community even though I'm not that big a D deafie.

Why is Grayson so obsessed with Tomato's hearing aid covers? OK they are badass and cool but they're like the least important bit of the programme. I didn't SEE Tomato wearing them, or any other hearing aids for that matter in the film... Maybe he did and those scenes were edited out, who knows.

Ohno, the deaf people don't have proper access to music trope... Defining deaf by what (you perceive) they don't have there Grayson? *wince* this seems to be a hugely variable topic and probably not worth poking with any sticks here.

In the final scene showing the groups the artwork Grayson goes back off on one saying the people in this programme all have "issues" and I feel it refers back to him admitting to disagreeing with those people on aspects of their identity like he did with the fat women implying a load of health propaganda from earlier in the programme to invalidate their proudness of identity. Grayson does then go on to talk about some of his perceptions of the deaf people and a politicised identity and a number of fairly nuanced points about Deaf identity but I can't help feeling he's not really grokked the Deaf group as much as he has some of his other subjects in this series.

I wasn't sure what to make about the final artwork for the Deaf group. I have heard a few people saying they're unimpressed online from before I saw the programme. I now realise that Tomato has made it his twitter icon. I was prepared not to like it at all, but I think understanding more of Grayson's logic behind it and seeing the finished version makes me like it more. Grayson did make a nice comment to Tomato that he liked the hearing aid covers cos they were a bit angry which is true, deafies are a bit angry and rightfully so.

I had never used a terp to communicate with a BSL user until I started my current job, I had always just blagged it in Deaf spaces or with signing people with what sign I have and had a lot of support and patience from better BSLers and it was social. Using a terp to communicate with BSL users at work because it's professional is SO much harder (for me) in many ways because it makes things much more stilted and does weird things to turn-taking and conversational flow. At least I can watch the BSL user signing for themselves and get tone which non signers don't get anything from. I wonder how much Grayson will have lost engaging with the Deaf people in this programme from not having any sign language himself as even a bit of sign goes SUCH a long way - I wonder how many BSL users would take a crappy signer vs terpped conversation.

I'd say this episode of the series is the least-good of the three, with the least apt artworks for the subjects, only one group the fat women really loved theirs, the Northern Irish Loyalists clearly felt they were being mocked somehow and I think they were.

I think the Deaf people were covered better than they would have been by most hearing presenters and I'd give it a solid 8/10 in that they did cover a number of complex issues and didn't get side tracked into OMG Deaf Eugenics or some of the other boring stereotypes.

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More AtW stuff - lack-of-knowledge as a form of stonewalling

2014-10-31T19:47:36Z

Just catching up with the Internet this evening and I see this Limping Chicken article We were just looking at how to possibly catch you our, or restrict you. Access to Work Adviser talks to BBC News

I see a number of deaf and disabled people saying "My advisor didn't know or understand very basic things about my disability or impairment needs". I've experienced that myself, with my one-time named adviser demonstrating that she didn't know the difference between a textphone/minicom and palantypy/STTR.

What if this "ignorance" or lack of knowledge isn't actually genuine?

If if this "ignorance" is a way of stonewalling applicants.

It wouldn't be the first time I've seen claimed-ignorance used as a way of delaying or refusing to make adjustments for deaf and disabled people.

Think about it. It's very clever for at least two reasons:

The wider non deaf and disabled world doesn't know much either, so they may be inclined to sympathise with the "lack of knowledge" and reinforce that paradigm of "It's unreasonable to expect an adviser to know everything about every disability".

It adds another hurdle or barrier to the process, every barrier reduces the number of people able to overcome it. That barrier puts the onus back on US as deaf and disabled people to educate, explain and justify ourselves and our unreasonable requests to them.

Even when I have very carefully and politely educated and explained with all the power that my privilege of education, experience, nature of my job and sheer stubbornness give me; the access to work advisers have still stonewalled me in other ways.

It's very similar to the "disablist hatecrime barge", a very specific *shove* with the shoulder which when the perpetrator is challenged is excused as "an accident". It's not accidental, it's very very obviously not accidental, it's very specific and very intentional and extremely insidious because the disabled person who has been assaulted will often not be believed "Oh, they said it was an accident" "they didn't mean it"...

By FOIing the DWP asking for training materials, we allow them to distract us with the idea that more or better training might fix this problem. But if the issue is that they are directed to evade and stonewall us then no amount of 'training' and "consultation" will make any difference to a systematically and institutionally disablist system.

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Access to Work #AtW - workplace support for deaf & disabled people

2014-10-29T15:52:16Z

Context for this blogpost

I've been hearing a lot about increased problems with Access to Work (AtW) over the past 12-18 months and thought I'd collate some information all in one post so I can point people at it - this post will be a work in progress.

Access to Work is the government's system for providing assessment and funding for support for disabled and deaf employees in the UK. The government likes to talk about things in pure economic terms but will ignore their own figures which show in 2005 that for every £1 spent on AtW, the wider 'economy' benefitted by £1.48. The primary source for this is nearly impossible to find other than cited as DWP 2005 but it was cited by Liz Sayce in her widely cited Getting in, staying in, and getting on report colloquially known as "The Sayce Report".

If you want to help

If you want to do something to help, even if you are not an AtW user or your AtW is working well for you please consider joining Srtop Changes to Access to Work and watching the video of Jenny Sealey's rally speech in BSL with English subtitles.

Access to Work has never embedded true accessibility by design

Access to Work has never been the most accessible or user friendly system. Administered by the Jobcentre Plus (JCP) within the Department of Work and Pensions (DWP) it feel oh so very much like the hassle of trying to claim social security benefits such as job seekers allowance (JSA). I should know, I've claimed both.

Examples include

AtW not communicating accessibly,

Repeatably asking deaf people to telephone them even if AtW is needed to access deaf-suitable-telephony;

sending print letters to blind and partially sighted people even if they don't (yet) have technology to access them.

These things matter because they expose the lack of inclusion and respect for deaf and disabled people at the heart of the organisation. Processes are more important than access!

Recently the DWP has made large numbers of the AtW caseworkers redundant and closed down contact centres. This means that instead of a named advisor, we now have a nameless contact centre so can't even 'train someone up' to our communication/access needs, but have to start afresh every time which is time consuming and stressful.

AtW users have not been officially informed of changes such as redundancy of case workers or changes in "the process", we only find things out when postal addresses fall out of use (or we check the gov.uk website and see things have changed), telephone numbers and email addresses don't work or our support workers are not paid. This is made harder by the fact that even advisers who are still in their jobs don't answer their phone, return calls or respond to emails.

Collating experiences

I'm going to collate people's personal experiences of Access to Work in this post and write a separate post of my own about my experiences of this potentially brilliant but institutionally disablist support system.

I'll put things under categories of D/deaf and disabled separately as D/deaf people are being disproportionately affected as a single-impairment group due to the high cost of communication support workers.

I am happy to receive links to sensible resources and people's experiences in English or BSL in comments, to natalyadell or to natalyadell at gmail dot com and I'll upload them when I can.

Deaf/deaf and HOH people's AtW experiences

Ian Noon - Parliamentary Campaigns Manager at National Deaf Children's Society (NDCS) -
Access to Work difficulties via Limping Chicken - February 2014

William Mager - Series Producer, See Hear
Will changes to disability work grants affect deaf people the most? article in BBC Ouch magazine - October 2014.

Jenny Sealey MBE - Artistic Director at Graeae a UK disability led theatre company and co-artistic director of London 2012's paralympic opening ceremony.
Our mission could be in jeopardy.” Graeae’s Jenny Sealey on impact of Access to Work problems on theatre company. Limping Chicken article outlining the issues impacting deaf and disabled people in Graeae and potential impact on small disability-led organisations.

People with other impairments

Jess Thom - CoFounder of Touretteshero comedienne and children's worker.
Access Impossible article about her recent difficulties with Access to Work - Oct 2014.

Howard Hardiman - Freelance artist, author, illustrator who has a progressive physical impairment.
The trouble with not giving up blogpost about his recent experiences with AtW

Robin - Part-time self employed printmaker
Access to Work - the government's in charge of another car crash blogpost about his experiences of AtW and discussion around rhetoric and structure of the system

Links, campaign groups and general information about AtW

Gov UK Access to Work site

Disability Rights UK factsheet F27 on Access to Work

Action on Hearing Loss webpages about Access to Work for employees and employers

Deaf ATW a site set up by an interpreter to support people in challenging (poor) AtW decisions. Contains BSL video information about some issues. Outlines a number of issues mostly affecting deaf people in AtW terms.

See Hear Access to Work special episode available until ~20th November.

National Deaf Children's Society (NDCS) submissions to the Department of Work and Pensions Select Committee inquiry [PDF].

Stop Changes to Access to Work Campaign latest update and more information at Stop Changes to Access to Work main website.

News articles about Access to Work

OCT 2014
Access to Work crisis: Minister apologises for bungled reforms Disability News Service.

Access to Work crisis: Another Deaf leader speaks out Disabiity News Service.

Access to Work crisis: Minister is ‘full of hot air’ Disability News Service.

UK Council on Deafness welcomes Minister’s commitment to improve Access to Work

Work and Pensions Committee Oral evidence from Select Committee on 29th Oct 2014

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How to mug a deaf person... Are support workers human?

2014-09-14T21:48:27Z

How to mug a deaf person. A video produced by someone I know, Caroline O'Neill and written by a Ben Green is up for the British Comedy Awards and seeking votes at http://www.comedy.co.uk/bca/video/163/. Another similar comedy sketch is Deaf Mugger by the same writer Ben and directed by William Mager at http://www.youtube.com/watch?v=us7nAFSfo1U. I think Ben has a bit of a mugger thing going on. In both videos the sign and speech is subtitled beautifully!

On one of the deaf places I sometimes hang out someone said she didn't like How to mug a deaf person because it made the interpreter the butt of the joke.

I thought How to Mug a Deaf person was pretty funny, using the vehicle of interpreter having to relay what has been spoken to the deaf person (or around them) or signed by the deaf person faithfully because their professional code. In reality the code is at http://www.nrcpd.org.uk/page.php?content=30 and both interpreters would be able to refuse in these cases, but this is comedy, and in these sketches the interpreters are following a simplistic "must interpret all" even if it means they are aiding and abetting a crime or have to tell a mugger they're carrying lots of cash...

It's a bit of a 'what if' and not entirely unrealistic. In the early naughties the American 711 relay services were being heavily used by overseas scammers using the relay operators to relay scams . Newspaper reporting including MSNBC had interviews with relay operators saying they felt like criminals being required to relay threats and obviously unlawful content.

USA organisations are not permitted to refuse to take relay calls, but because of this high scam load many were doing so because more than 80% of calls were scams. This was causing harm to American deaf and deafblind people so eventually the telephony regulators instigated systems to make relay providers verify the identity of callers and ensure they are in the USA. UK law is similar, making it unlawful to hang up on TextRelay which I discuss in my blogpost about receiving relay calls

As well as issues around legality, I think these comedy videos highlight humanity. The humanity of "support workers" "communication professionals" who are theoretically supposed to be invisible when acting for deaf and disabled people, but in reality cannot become unpersons, because they are human, they exist with characteristics such as age, race, gender.

In the UK court system it is not currently legal to take a sign language interpreter or other support worker into the juror's deliberation room because legally the interpreter would count as a 13th person and breach the "sanctity" of the deliberation space. This is being challenged by UK deaf people and a mock trial is being carried out to see if having a deaf jurer and interpreter impacts deliberations.

Research such as Women-only services: making the case by The Women's Resource Centre in the UK and the UK Women's National Commission's Findings from the WNC survey on women-only services consistently shows that the presence of men in some spaces can make them less safe for women. It is common practice in women's centres and organisations to have areas where men are not normally permitted during opening hours. It is easier to find research on women, so I am going to extrapolate the same principle for other X only spaces.

Some time ago some friends and had an exploratory debate about the nature of a disabled or deaf person needing to take a support worker into what I call "X only spaces" so women only or Black, Minority Ethnic (BME) only people spaces where the support worker did not meet the required characteristic.

I've seen various disability activists argue that the disabled person's access rights override the requirement of a support worker to have the appropriate X characteristic for X only spaces. I'm not sure I agree, cos intersectionality happens and sometimes needs clash.

The argument that a support worker is like a wheelchair or even a guide dog doesn't work. A support worker IS a human being. It isn't about their professionalism, it's about the fact of their personhood that they could in themselves be a threat to other people in that X-only space - making it potentially unsafe or unwelcoming for many other people. So it pits a disabled person's right to support over other people's right to safety.

This wasn't just a hypothetical exercise, I've organised events where a disabled person who had another X characteristic has attended with a support worker and would be absolutely welcome and entitled to go into the X only spaces. But their support worker might not be.

Could we be honest about our policy, encourage people bringing a support worker to communicate with organisers in advance, so if their support worker wasn't appropriate for X-only spaces that we could look at alternative options? Some people don't need their support worker all the time, could the support worker help assist the disabled person as needed then wait nearby ready to be called if needed? Could we split a X-only session in half, one with non-X support worker and one without - giving other attenders honest information about what the space would be? Could we (with advance notice) as an organisation agree to pay for/towards hiring a support worker or person who could provide support for the duration of the X-only session? Much depends on what the nature of the support is, or how much notice we had.

There isn't necessarily an answer which would keep everyone happy. But it was useful to think this stuff through, talking to women, trans people and people of colour about how they would honestly feel about sanctity of their X-only spaces.

To me, beyond the comedy, the deaf mugger sketches really throw that personhood of a support worker in the viewer's face, making us uncomfortable, or laughing at the ludicrousness of it, but at the same time, maybe making us think and remember that while we can demand high standards, it's difficult and a bad path to go down trying to dehumanise anyone, even a professional "non person" in some situations.

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DSA summary as of September 2014

2014-09-02T17:19:03Z

I'm seeing more inaccurate posts about the DSA changes on social media. I recommend reading my longer posts tagged DSA at http://natalyad.dreamwidth.org/tag/dsa

The latest update about DSA changes is at http://www.practitioners.slc.co.uk/media/796005/bis_dsa_policy_update_for_2015-16_entry.docx

An update is promised for early September... In the politest possible way I don't anticipate this being on time.

In summary:
1) The changes ONLY affect students starting NEW courses in 2015-16. The academic year starting this month is 2014-15.

2) Banding refers ONLY to "non medical helpers" aka support workers. The banding is linked to the Non Medical Helpers Reference Manual which you can find at http://www.practitioners.slc.co.uk/media/705785/non_medical_help_manual_v16.pdf

The new DSA changes propose that higher education institutions (HEIs) fund anything in Band 1 or 2 of the NMH manual. The expectation is that DSA Needs Assessors would make recommendations and universities/etc would have to fund the support. If they do not fund support the student could complain and the university would have to justify their actions.

Manual notetakers are band 2. Library or practical assistants are Band 1.

3) Equipment changes are mainly that computers/laptops will no longer be supplied as standard. We are not sure about printer/scanners. The expectation is that students will have their own laptops.

Assistive or specialist software for disability purposes should still be DSA funded and just installed on student's own computer (which is a pretty terrible idea for many reasons but...). Other specialist equipment e.g. radio aids, magnification systems or ergonomic equipment should still be funded via DSA.

I will take questions in comments or by email to natalya dot dell at gmail dot com and try and share my answers and citations.

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The deaf child with a radio aid in school

2014-08-14T22:31:55Z

You are a deaf or hard of hearing child in mainstream school sometime between 1985 and 2005.

You wear hearing aids (or a cochlea implant and processor) which may or may not work to varying degrees to aid your hearing. You may also be relying on visual cues to know what is going on in the classroom. The classroom can be very noisy.

One day your teacher of the deaf brings a radio aid into school. The receiver box connects to your hearing aids or CI processors with shoes, and wires, the box is clipped or botched onto your clothing somehow, probably in some way which is uncomfortable or annoying. If it’s nearer 2005 you have small connectors which clip into your hearing aids or CI processors which instead of being bulky are fiddly and annoying and you’re constantly terrified of losing them. Your teacher is given a transmitter unit which he or she wears around their neck, everyone tells you it is to make their voice louder so you can hear it better.

When you are wearing the radio aid receiver plugged in and turned on and the teacher is using their transmitter in this scenario you are able to hear their voice - right inside your head. It might help you understand what the teacher is saying better, but it makes it harder to hear or focus on what the other children are saying. You don't get told there's a mode which allows you to hear the teacher and the classroom noise at the same time as the transmitter is probably set up for you and might be locked so you can't change it.

The teacher instructs the class to get on with some work, which you do like almost everyone else. You write your name, the date and assuming you understood the instructions the required title at the top of your page and start working through the tasks. If you are lucky you get into the zone and are getting through the work.

"JOHNNY, STOP THAT!!!"

*You flinch!*

Your hands fly to your hearing aids or the radio aid and the OFF switch.

The teacher has just bellowed at 90 decibels, right into your head (via the radio aid).

Your heart pounds, adrenaline floods through your body.

Oh.... It’s not you in trouble.... It’s someone else....

Breathe slowly, your heart still pounding. You look around the room, most people are just working away, they didn't even notice the shouting or your flinches.

This kind of shouting interruption or other sudden noisy incident isn't uncommon. Loud noises can happen every few minutes if the usual suspects have a naughty day. Every time it happens though, you get startled and cannot concentrate on your work.

You might decide to leave your hearing aids and or radio aid off or turned low so the shouting doesn't startle you. If you are lucky you might be able to re-focus on your work which you want to finish in time so the teacher is not actually cross with you.

*Tap on the shoulder*

The teacher is standing next to you looking cross. Their mouth is moving but you can’t hear much of or anything they are saying. You turn your hearing aids and or radio aid back on cautiously as you know there’s a high chance that the sound of the words coming out of the teacher’s mouth are too loud because they are cross, their face distorted with anger, and this time it is you who is in trouble.

"Why have you turned your hearing aids/radio aid off?" "Mrs Teacher-Of-The-Deaf says you need to keep your hearing aids/radio aid on at all times." "HOW MANY TIMES HAVE I TOLD YOU..."

There is no way you can tell the teacher that you turned your hearing aids and or radio aid off because they kept yelling into the transmitter and scaring you. Or that your entire school life is a confusing mixture of loud and confusing noises or inaudible confusing speaking people.

You hate the radio aid for other reasons too. The stupid wires which get tangled in everything, sometimes sending your hearing aids flying which makes other people laugh at you. The receiver box might be ugly; NHS beige or poo coloured; it might be too heavy for your clothes which can cause it to go kerplunking to the floor - and if it breaks that’s another thing you get into trouble for. Hearing aid harnesses are hideous, you don't want your parents to get that idea into their heads. Everyone else gets to rush out of the classroom at the end of the day, but you have to remember to turn off, unplug and charge the radio aid or return it to somewhere for safekeeping overnight, knowing you’ll get into trouble if you forget, or worse get constantly nagged by the teacher about it.

And that’s before the ways using radio aids is stressful. Teachers who fiddle with the transmitter or have rustly clothes which make a horrible noise. Having to remember to collect the transmitter from the teacher at the end of every teaching session before they disappear off to wherever teachers go after classes, this is worse at secondary school with up to 6 or 7 classes a day. Desperately trying to shove the radio aid bits into your school bag quickly so you can keep up with everyone else - they are already half way to the next classroom. Supply teachers deciding that a ‘child like you’ can’t possibly be responsible for such an important and expensive piece of technology so refuse to return the transmitter to you; preferring to hide it somewhere in the terrifying staffroom. Meaning you will have to go and knock on the dreaded staffroom door during a break and hope it isn't someone scary who answers it. Then actually go into the staffroom while it’s full of teachers as only you know what the stupid radio aid looks like.

There are some entertaining moments, the time the teacher forgets to turn the transmitter off and goes to gossip in the staffroom; so you and any friends can try to listen in. The teacher will try to blame you for their forgetfulness though, and try to get your parents on their side. It's funny the first time the teacher goes to the toilet with the transmitter turned on, but gets pretty boring when repeated.

All of this hassle for noise that is IN YOUR HEAD. Often doesn't feel worth the hassle. You might stop using it in secondary school, stop caring what the SENCO or the Teachers of The Deaf say; they can’t make you, they’ll just nag and mither you about it. If you stop using it for long enough maybe they'll forget you ever had it.

...

Some years later you’re thinking about university and suddenly the spectre of radio aids appears again...

The university disability adviser talks enthusiastically about how helpful radio aids might be for you in lecture theatres where there’s up to 300 students, not the 30 max you are used to at school or college. The DSA Needs Assessor also goes on about radio aids, swears they’re much better now than they used to be and might even have some they want you to try.

You can’t think of anything worse. Bad memories. Hassle.

Giving control of your hearing whatever hearing you have to someone else? Not a chance! No thanks!

Disclaimer, commentary and my personal experience
To use or not use radio aids as an adult should be a deaf person's choice.

As a deaf adult I have returned to using radio aids, several years after the BAHA got appropriate connectors. Access to Work provided me with a Connevans fmGenie in 2007 and allowed an upgrade to a Comfort Digisystem in 2013.

Radio aids don't amplify sound "make it louder" no matter what anyone tells you. They eliminate the distance between the speaker's voice or desired sound and the listener, and in doing so increase the signal compared to the (background or unwanted) noise. Having a microphone a few centimetres away from a speaker's mouth vs being two or more metres away makes a huge difference because physics happens in the form of the "inverse squared law. Radio aids can help in large rooms with lots of people shuffling around in them, or reduce the unwanted noise of the increasingly ubiquitous noisy digital projector and air conditioning systems.

Visible radio aid systems and symbols of deafness also make people do better deaf awareness, as they have a constant visual reminder. I love it when I can find another deaf or hard of hearing person to wire up to one of my spare radio aids as "visible reminder" so I don't have to necessarily have to use mine myself! I may write about the complexities of visible vs invisible impairments and and and some other time...

Radio aids are still annoying:
Many of the issues in the article above haven't changed since 1986 when I got my first poo coloured Phonak radio aid. I still remember its white 9 volt Nickel-Cadmium rechargeable batteries which needed charging every 6 hours, fortunately in the classroom at primary school. Secondary school's "charging place" was up 4 flights of stairs at the furthest part of the school from the school bus stops. I could charge the radio aid, or miss all the buses home and we weren't supposed to use the public buses. The units were heavy so carrying them to and from school (on top of all my other "assistive tech" wasn't an option. Learning to manage the listening requirements of so many subjects and teachers in so many different classrooms was hard enough without having to give and collect the transmitter unit from teachers every lesson. I got my first Bone Anchored Hearing Aid (BAHA) in early 1992 aged 12 and they didn't have radio aids which connected to them, so I was able to stop using it.

Not everyone can use the micro receiver units, I'm one of them as I choose to use a weird BAHA which doesn't use the modern connectors. I still have wires and receiver boxes and I ping hearing aids and glasses everywhere quite often - it's less bad as an adult as I can crack a joke before anyone else can - all I need is false teeth to finish the set etc. Speakers are still notorious for fiddling with the transmitters - one radio aid I tried sounded appalling if the transmitter casing rubbed against anything! I'm still responsible for making sure I have the right wires, working hearing aid batteries + spares, charged radio aid batteries, and enough brain to remember how to make it work. I manage by having a set of everything in one bag for that purpose only.

As an adult, I have more choices. I can download the radio aid manuals and set the system up the way I want to, or twiddle with the setting whenever I like. I very rarely give a radio aid transmitter unit to a speaker because I still hate having to ask for the transmitter back cringing inside every time I have to. I usually use a conference microphone which I put somewhere convenient for me and away from people's poky hands. I can and do control the volumes of different systems. Adults speaking in adult situations tend not to shout suddenly. I can request some deaf awareness a lot of the time.

With everything written above in mind: Sometimes I am that disability advisor being enthusiastic to a prospective or current deaf or hard of hearing student about radio aids. Sometimes I see my students cringe and I wonder if they have bad memories of radio aids too - and will ask them. I try to make suggestions about ways a radio aid can be used in a way which is useful while not giving other people control over the deaf/HOH student's hearing.

I am also aware that some people just don't get any or enough gain or assistance from radio aids to overcome the intrinsic annoyingness of using them. That is OK too.

Whatever my students choose, they are adults who have the right to make and live with the consequences of their choices. What I can do, is give them the opportunity to make an informed choice and know that they can change their mind or talk to me about deafness and study stuff as I might have ideas and I will try hard not to be judgemental even if I think they're making a mistake - which are their mistakes to make.

I wish every teacher of the deaf, SENCO and parent of a deaf child knew what wearing a radio aid was like. Even if it isn't possible to allow a deaf child in education to "opt out" of using one. Our experiences as children and teenagers often inform our feelings and choices as adults.

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Deaf deaf HOH HI - deaf unity what's that?

2014-04-23T20:20:33Z

Deaf, deaf, Hard of Hearing (HOH), even the dreaded Hearing Impaired..... There's a lot of divisions in 'deaf communities' and a fair bit of fighting. I don't join 'deaf' spaces without expecting to need a fairly thick skin.

Yet every individual I speak to Deaf, deaf, HOH, deafened, deaf-blind says they don't like the division and fighting either. In fact I'd go so far as to say people HATE it. I know I do.

Just hurling this blogpost out now in reply to a tweet really, cos 140chars isn't enough. Someone suggested we had too much uncommon ground to do deaf unity...

That's almost the opposite conclusion to what I was noodling with the other day.

The entire deaf world seems to be split into BSL signing culturally big D deaf and oral/aural non-signing small d deaf (hard of hearing, hearing impaired etc)...

You're either or.... Apparently.

And even if you do accept a D/d deaf divide we seem not to be able to work together on anything and there's epic amounts of grudge bringing up, "you were mean to me about X, so I'm not being nice to you about Y"...

And I can understand that. Cos what it says to me is we're all hurting. Paddy Ladd on See Hear talking about CIs discussed bullying amongst "deaf" people of all deafnesses and talked about how it was caused by structural audism...

So assuming there's 3 loose groups of deaf-signing, deaf-oral and then the inbetweeny group of deaf signing & oral cos an astonishing number of people seem to have some level of sign language skills...

I tried to work out some basic choices and which groups would choose what. And actually very few fell into either the deaf-signing or deaf-oral only camps. Most fell somewhere in between.

I also tried to add deaf-blind and deaf+other-impairment to that cos many of us do have sight impairments and I hear deaf-blind people talking about inclusion or exclusion within the deaf community. My own "additional impairments" affect how much I physically CAN sign...

So here's my startng venn diagram.

What have I missed? I'm sure I have missed stuff, will modify this as needed.

But I think we can all agree that we support access to
* Appropriate and full access to language during the critical early-years window
* Healthcare via deaf awareness and communication support
* Education, cos right now for deaf children it's not good
* Employment support in the workplace with deaf awareness, less structural prejudice,
* Access to Work support whether it be for BSL terps, lipspeakers or radio aids
* Entertainment with subtitles for cinema and DVDs and videos on websites etc
* Funding for access to support for every day life like Finland has for deaf people
* Some stuff under legal, social, moral, medical models of disability.
* Assistance animals like hearing dogs or guide dogs

The only thing I could find which I think some people want and others don't is culturo-linguistic recognition of British Sign Language. Which arguably even those who don't sign don't lose out from, and could benefit from if we wanted to learn/improve our sign language and could apply to other things...

What are the other differences we have amongst ourselves?

Clarifications and possible modifications
Firstly in the Venn Diagram I have simplified all "deaf" identities into 'deaf' for reasons of space and simplicity. If I filled the Venn diagram with deafened/HOH/Deaf/sign language user etc it wouldn't be as easy to read. What I might do in a better draft of this entry is specify I am going to do that alongside a description of the image for people who can't see it.

I also haven't talked about deafness levels in any way. Nor have I attempted to define the sign language group as profoundly or severely deaf and the oral group as anything else cos level of deafness in my experience is less relevant than upbringing, culture, personal choice etc. I know of "profoundly deaf" people who are only oral and do not sign. I know "moderately deaf" people who are culturally Deaf and who do sign. I know "slightly hard of hearing" people who have chosen to learn sign language etc etc.

I haven't talked about CODA/KODAs. We hear a lot about signing CODAs, but not a lot about oral CODAs yet many of us non signing people will have children who are "children of deaf adult(s)". I am too ignorant on this to say if there is info out there but it's on my think and read a bit more about list.

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Lipspeaking a bit of info

2014-04-22T23:03:13Z

Why am I writing a post about lipspeaking
I asked various real life and Internet friends if they knew what lipspeaking was and how it worked and more than 75% had no idea or were guessing. People said they would like a blogpost.

I have to start out by saying I am not an expert on lipspeaking. I have known what lipspeakers are since 1995 but never used one myself or been around anyone using one. I am sharing information and knowledge that I have acquired from being on various online deaf communities. This post contains some of my contextualised opinions as well as information.

I am using the word deaf to mean anyone with a hearing impairment and or has any kind of difficulty accessing spoken speech sounds e.g auditory processing disorder etc.

What is a lipspeaker
A lipspeaker is a person who has been specially trained to repeat a speaker's speech in a more easy to lipread way. Usually silently but they can use their voice on request.

Lipspeakers may add fingerspelling, sign language, body language and other cues to their communication and will adapt their communication according to what the deaf client requests and needs.

Where the original speaker is speaking very fast a lipspeaker may have to rephrase what is said and only repeat the more essential and salient points. A lipspeaker is supposed to be less than a sentence behind the original speaker.

There are different levels of lipspeaking qualification. Level 3 seems to be the level required for professional lipspeaking.

North American terms
North Americans often use the term "speech reading" for what we UKers call lipreading.

I now wonder what lipspeakers are called in America...? Googling didn't initially help so I asked humans on the Internet and got an answer in under 5 minutes. Lipspeakers in America are called "oral transliterators".

What does lipspeaking look like
As of April 2013 there is only one 2min35s subtitled video on the brand new ALS website. The video is of a spoken voice which the filmed lipspeaker is lipspeaking for. This video is a deliberately staged and slightly exaggerated example of lipspeaking which is well designed to demonstrate the principles and concepts of lipspeaking.

http://lipspeaking.co.uk/videos/

I am hoping (and have asked) if the ALS can upload some different short clip examples of lipspeaking in the wild and using different modifications like sign language and language modification.

Lipspeaking in situational contexts
Mileage is going vary hugely for how useful people find lipspeaking dependent on many factors such as:

When they became deaf e.g at birth or before they developed language, early childhood, adulthood or in old age.

Rapidity of deafness whether sudden or gradual.

Level of deafness.

Type of deafness.

Amplification choices - none, hearing aids, CIs, others.

Communication choices - speech, residual hearing, sign (BSL/SSE/SEE), cueing and more.

Education - level, quality, type, awareness.

Individual personality and preference and situation.

For oral deaf (people who communicate primarily with speech and use residual hearing possibly with hearing aids and cochlea implants) and deafened (those who have been hearing and become deaf) people lipspeaking enables them to access the tone, cadence, meaning and body language of the original speaker while accessing the clarity provided by the lipspeaker. Many people could not access this with text based communication options.

A lipspeaker (like a sign language interpreter) can move around with a deaf person in situations like conferences and places where small groups of people are clustered around talking.

A lipspeaker terping for a group may well be much much easier to follow as it's a single person rather than having to look around to find the new speaker and switch focus to them and their new lipspeaking patterns. It takes deaf people longer to realise a new speaker has started talking and "lock in" to the new speaker's speech patterns.

To lipread English (or an other spoken language) effectively requires the deaf person to have a suitable vocabulary for understanding what has been said. Basically someone has to have the language and vocabulary in the first place to make use of this so it may not be suitable for a BSL user who does not have good English.

Lipreading classes
I am a huge fan of lipreading classes for people who are deaf, especially those who become deafened as I believe they teach a lot of very useful skills for coping with being deaf in the real world.

Action on Hearing Loss's Lipreading page: http://www.actiononhearingloss.org.uk/get-involved/campaign/read-my-lips/lipreading-for-people-with-hearing-loss.aspx

I must sign up for some of those classes myself at some point.

Association of Lipspeakers
The professional body which represents lipspeakers is the Association of Lipspeakers (ALS) and their newly designed website is at http://www.lipspeaking.co.uk/. This website is pretty comprehensive and worth a read in their own words.

You can also search for lipspeakers on the National Registers of Communication Professionals (NRCPD) website at http://www.nrcpd.org.uk/ Tip, you have to provide a location before it'll let you select professional type in the next field.

Many lipspeakers also have their own websites.

Lipspeaking seems to cost approx £30-£40 an hour and may be charged in minimum increments of 2 hours, or by the half/whole day. Two lipspeakers may be required for long or complex assignments.

My thoughts on lipspeaking for me
I think lipspeaking still requires the deaf person to concentrate a lot.

Lipreading and using residual hearing is tiring and only about 35% of the English language is even possible to lipread from normal lip patterns alone. I do not yet know if this is higher for lipspeakers (using modifications and otherwise).

Last time I was tested (artificial conditions, previous hearing aids) using single words and careful male audiologist spoken sentences:

Without lipreading my comprehension was ~60%

With lipreading my comprehension was 90%

I found the lag on the ALS video somewhat disconcerting and am not sure that I would gain much from a lipspeaker that I don't get from lipreading most speakers for myself. In fact watching the video felt much like my few experiences of sharing someone's BSL terp where it was useful and gave me some extra info but extremely tiring to take advantage of as my BSL is fairly poor level 2 standard.

I think I use a lot of my energy processing audio, even with lipreading or sign language supplementation. This means my memory for audio information is poor. At work I have to make notes or I'll not remember what my students have said properly. I have an excellent (as in frightening people by what details I recall) memory for information I have seen presented in text.

While I haven't experienced a true test of lipspeaking I don't think it is for me. However I think more people should know about it and evaluate whether it's something they would find useful and share this information with deaf and hearing people.

Questions? and comments are welcomed
If you have any questions, chuck em in the comments. Please tell me if I use words which you don't know, so I can go back and expand/define them if needed.

I'll probably edit this post as I go along.

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Deaf people's access to healthcare - my rather long thoughts

2014-04-16T17:44:03Z

As a deaf person with additional impairments and more hospital experience (including 47 general anaesthetics to my name) than I can shake a stick as I thought it was time I wrote something about my experiences in the NHS as a deaf adult.

To keep this blogpost shorter than War and Peace itself and low on the rantiness factor I shall create some jumps to the separate sections I've written about.

Jump to Recent articles and research into deaf people's access to healthcare
Jump to Patient contacting GPs and hospitals etc
Jump to Reception services upon arrival
Jump to Alerting people to appointment slots
Jump to Consultation spaces being noisy and disrupted
Jump to Bad and good experiences with clinical and medical staff
Jump to Experiences of using my partner as communication support and why I haven't tried professionals
Jump to Some conclusions and thoughts
( Cut for length )

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