This week, for our very first Inclusive Futures: Reimagining Disability Blog, we are joined by a selection of guests who represent the Deaf and hard of hearing community as part of the National Week of Deaf People (NWDP).
An initiative of Deaf Australia, the National Week of Deaf People is a week-long national celebration of Deaf individuals and the Australian Deaf community, which includes celebrating the International Week of Deaf People (IWDP) and International Day of Sign Languages (IDSL), which are initiatives of the World Federation of the Deaf (WFDEAF).
Deaf Fatigue: The Longest Day
Manager, Student Disability and Accessibility, Student Success, Griffith University
Some days I go home so exhausted, one would think I was physically lifting boxes all day. I am tired, too tired to chat, to focus or interact with others. I just zone out – which in summer months I might do by gardening late in the afternoon or early evening (something physical), maybe even walking my dogs, or vegging out in front of the TV for an hour or so…
I am not tired from physical work, but tired from trying to fill in the blanks in communication gaps all day long. Listening fatigue, concentration fatigue, Deaf fatigue (whatever the term – they mean the same thing) – listening can be mentally and physically exhausting and not just challenging, if you cannot hear. It takes a lot of energy to be attentive, lipread, process words not heard correctly (words you may never have fully heard in your lifetime) and constructing meaning from what you have heard – filling in the blanks… your mind can be processing a lot – then you must also reply, and participate in meetings, and in a lot of situations also look and sound intelligent. It does not matter how deaf or hard of hearing you are – even with mild hearing losses the fatigue can be as real. It sucks.
Communication and C(r)aptions
I cannot count the number of times I have missed the opportunity to share my expertise or look intelligent to others due to missed communication. Or the number of times I have been misunderstood by my responses, or the times I have said something so late in the communication trail I receive weird looks. The times I have spoken, and someone is still speaking, and I am unaware (embarrassing when it is your superiors you do this with). It can be harder if you are a deaf person with good speech, as it is almost guaranteed that others will often forget you are deaf. The days I have back-to-back meetings and the only access I have all day is auto captions – or none – are the hardest.
As a Deaf person with good speech, my needs can often be overlooked. Many will assume auto captions work well – but some days, for whatever reason the captions just do not work. These past two weeks, there have been four important meetings where I was going to rely on auto-captions, and they just did not work – I logged out and in again and tried everything – no captions at all – that is the worst. If I am in the office, I cannot turn the computer sound up loud enough to enable me to understand some (lipreading and auditory clues) – without captions, as that would disturb others – so I am stuck lip reading alone, gleaning what I can from PowerPoints – turning on captions on my phone or other options, while missing about 10 minutes or more of the meeting, trying to establish access. It is even harder to fill in blanks or know if auto captions are correct or not, when one has missed a significant chunk of a meeting / interaction.
Auto-captions are also not always accurate, which is why many refer to them as craptions (crap captions). You really need to use them regularly to notice the ‘crap’. They have improved significantly in recent years and are a good back up for when there is no other access. Real captions, generated by a real human listening and typing the captions are more accurate – I say more, not fully. Yes, they can be significantly more accurate, but they are typed using a stenotype machine with a phonetic keyboard and special software – they are still behind in time to real time speech, and phonetic typing can still lend itself to errors. A Deaf person is trying to watch the captions and the people speaking at the same time and this is still more mentally taxing – they also still need to fill in the blanks, adjust the errors (typically with workplace jargon the captioner is unaware of). Even with access it is more mentally taxing, than just listening. When there is a meeting with numerous speakers – even more so – as you do not hear changes in voice, do not see the facial expressions only words on a screen. All this makes it so hard to know, if the person is joyful or annoyed or sarcastic or any other emotion – spoken words typed verbatim on a screen do not convey the emotion expressed in tone, and on a face – and you are trying to watch both at the same time.
Auslan, Interpreters, Captioning and the Big Sting $$$
I am much more relaxed when I have Auslan interpreters for access. Auslan interpreting conveys the emotion in the speech and thus one does not have to mentally fill in the blacks as much – still we need to watch who is talking, trying to keep pace with who is saying what – but it is much easier than words on a screen. There is a shortage of Auslan Interpreters in Australia – so this is not always possible in all my meetings. I cannot plan to have such support, captions or Auslan Interpreting, in all my meetings as I am limited to $6,000 in support every calendar year. That does not go far at all. Job Access, the Federal Government Support for workers with disability – caps the amount of Auslan or Captioning support at $6,000 per individual every year. It’s been the same for 18 years – never increased along with Interpreter and captioner wages and CPI, zero increases! All other disabilities and equipment support costs have increased and Job Access has paid these increases – just not with Interpreting or Captioning.
This week alone I have 12 meetings, 14 hours of time in meetings – if I booked captioning for all these meetings, I would be spending over $2,600 in a single week. If I booked Auslan Interpreters, I would be spending up towards $4,000 – as I need book two interpreters for a minimum of two hours each (even for one-hour meetings). I could schedule and shuffle meetings and sometimes, in shorter meetings, try for a single interpreter and lessen that to around $3,000 – but still… you see, my support dollars will be exhausted rather quickly. I can access more hours and dollars in my NDIS plan for Auslan Interpreting for leisure, than I can for work supports (note: just think I am at work more days than I am not in a calendar year) – this is wrong – it really makes the statement (intentionally or unintentionally), that we do not really want people with disability in the workforce, particularly in professional or leadership roles. This is why Deaf staff go to meetings without support or rely on minimal support (craptions for example). We are forced into these situations, or would have to decide to have only three weeks of support if we are in professional careers, three weeks in a 12-month period!
Forging a Career in an Inaccessible World
Dylan Alcott at the Federal Government’s National Jobs Summit recently, made the statement “Some people want a job, for sure, but do you know what else some people want? They want a career. They want a leadership position.” In leadership positions, we want to be supported to showcase our best selves. I can be more than I am – but I do not have the access those with hearing have. Access is more than captioning and Interpreting – it is also understanding and partnership with those with differing needs. Partnership in allowing plenty of notice for arranging supports, partnership in taking things slower at times to allow participation and response. To not speak all at the same time, to watch the auto-captions yourself in some meetings so you know when they are wrong for your colleagues. Pause. Take breaks in meetings, between sentences, between speakers, limit the background noises, use only captioned videos and perhaps ask your deaf colleagues how to help them in meetings. To understand in back-to-back meetings are a nightmare, and Friday late afternoons are the worse in energy levels to follow important meetings.
I can walk out my front door and put up a wall, a persona that allows me to function – hopefully appearing as a successful leader in my field – in an inaccessible world. I will feel uncertain in hearing environments, feel anxious even, and I will not always successfully mask this, such is not a great look in a leadership role, sigh. Just remember it is not always because I can’t – it is because I do not have the access. I am comfortable as a Deaf person – just not always at ease in a hearing environment. Even though I speak very well, I am more comfortable with Auslan Interpreting support, though I use this sparingly as there are limited interpreters available and I choose to leave this for those where this is an only option for access – or for students studying who really do need this support.
Just don’t judge us, we are not lazy, rude, or indifferent. It is just a lifetime of missed social engagements and missed communication gaps that can leave a void (in knowledge and communication) and we are mentally working hard behind the scenes trying to fill the void.