natalyad

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.

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.

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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

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).

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!

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.

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.

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?

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...

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:

1. What could/should Stonewall do?
   
2. What could be done collaboratively between bisexuals/bi community and Stonewall?
   
3. 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.