Introduction
I am no fan of online disability awareness programs/courses. You need a high level of motivation to make the content stick. As an appetiser to a substantial meal, they may have some virtue. But you don’t trigger a hunger by feeding a person a stream of information.
We must get away from what I call the ‘cognitive silver bullet’ myth. If information changed behaviour, we would have no health problems in our community. There would be no domestic violence, dangerous driving, or a thousand other human follies. Information has a place, but it doesn’t trigger change – unless the person seeking information is ready to change their perception or behaviour- and is highly motivated.
Back in late 2019 I was experimenting with an idea I had picked up from the Australian Public Service Commission. I arranged for some managers to come to talk disability with myself and four volunteers from the DEN. We had around 6 managers (I didn’t take notes). It took a while for the conversation to flow. It was a novel experience for everyone. But when it got moving it was deep and engaging.
At the end, one of the participants, a Director, revealed that she and three of her colleagues, who were also present, had participated in an online disability awareness program the week before. The experiment was, she said (and her colleagues agreed instantly) far more valuable. They were highly motivated and found the direct experience of talking to staff with disability the most potent trigger for changing beliefs and conduct.
Almost any form of awareness demands repetition. We have to build responses through repeated exposure to make experience stick. This isn’t true of the extremes. Burn yourself once and you won’t need a repeat experience to convince not to touch a red hotplate on a stove. At the other extreme, a single experience of ecstasy will endure a lifetime or two.
Normal reality is between these extremes and repetition of exposure to information or direct experience is necessary for a lesson to become integrated into our psyches. That is true for learning to play the guitar, drive a car or dancing.
How Easy is it to Understand Disability?
I have acquired disabilities that impact my mobility, grip, and manual dexterity. As a consequence, I understand the issues related to those disabilities. As a DEN Chair I spoke to people with a range of disabilities and quickly discovered that I needed regular reminders when engaging with my deaf and blind colleagues. It took me a long time to make my understanding habitual. Even so, earlier in 2021, I sent a blind colleague who uses a screen reader, an edit of a document she asked me to review. I told her I had highlighted passages I wanted her to review. I remember her laughter so clearly. In my mind ‘reader’ was a visual notion. Her screen reader converted visual text to speech. The highlighting meant nothing.
I had good intent, and a strong desire to be understanding. But my habit of mind drove through more than two years of knowing my colleague and made me an utter idiot, still. That was a sobering and salutary lesson. How could we convey, in any useful manner, sufficient vital information about disability in a half hour video, or an online course?
My next lesson came when I was asked to provide feedback on a disability awareness video. It was structured so that one could not progress unless correct responses were given at the end of each section. I was doing fine, but was not overly impressed, until I came to a section that proposed that people with disability are not limited in what they want to do. Well? Wasn’t that the very definition of what a disability is? I thought to myself, I can’t tap dance. Not that’d I’d like to. But there’s no way I could do that. At the end of the section, I knew what the ’correct’ response was. But it was wrong. I gave the right answer, but that was wrong.
I didn’t progress on the evaluation. I simply refused to give the wrong right answer. I was blocked. When I pointed this out to the unit responsible, I was told that the course could not be changed because there were no funds left. What was the point of asking me to give an assessment of the course if it could not be amended?
More to the point, what was the point of telling somebody a person with disability is not limited by their disability? I understood the point being made. But it was made badly. The point was that disability does not limit a person in every way – and that so often those limits are set by the environment and not the disability – but not always. Also, don’t you presume what I can or cannot do.
By telling people things that are not true, and which are patently absurd, we water down and romanticise disability in a terrible way. We block the empathy response, and we objectify the disability.
A few years back (2008/9), as part of the Don’t DIS my Ability campaign to build disability awareness there was a publication called Made You Look. The cover of one edition featured a young woman with bilateral below knee amputations holding a skateboard. It got my attention. It made me look. But for all the wrong reasons.
Maybe this was early on in the disability awareness campaign movement, and this kind of ‘shock tactic’ was needed. I am prepared to engage in an argument on this point; and be shown to be wrong. I don’t think it was a good move. Maybe it was what happens when people with good intent, but no idea, and people with disability, but no finesse in self-advocacy, come together.
The image triggered in me a reaction against the dissonance of the young woman and the skateboard. The answer to any question I had was “No.” The publication’s title was Made You Look, not Made You Care. The focus was on a cognitive response that triggered a rational evaluation, not an emotive response that triggered empathy.
How Do You Teach Disability Awareness?
You can’t teach disability awareness at an emotional distance. You can say obvious stuff like deaf people can’t hear and blind people can’t see, and people like me can’t tap dance, ski, skate or play any sport involving the ability to stay upright without supports.
Where this approach gets things horribly wrong is that it shouldn’t be about the disability. It’s about the person with disability who matters. Let’s be more specific. It’s about the person. No, let’s go a step further. It’s about being sufficiently self-aware to not make a fool of yourself when you are talking with a person with disability.
Making the problem about the disability misses the point. This point of view proposes, in essence, that you need foreknowledge of any category of difference before you can relate effectively.
If only people with disability experience exclusion and discrimination, there may be some merit to this approach. But disability is so complex not even people with disability can be assured of being sufficiently disability aware, just because of their own disability.
Would we assume that an Australian should understand all other Australian people, or what it is to be Australian, just because they are Australian? Of course not. When we do encounter ‘representative’ Australians, they are fictions. Sometimes they are absurd fictions – intentionally comedic.
It is true that a community of people with disability are collectively more empathic and responsive to member’s needs. This was repeatedly demonstrated to me with the DCJ Disability Employee Network’s Guidance and Action Team. But the common glue of disability quickly ceased to define the group. The emergent respect, affection, care and support was grounded in the ‘content of character’, not the fact of disability.
How would you develop an Australianness Awareness course? For it to be effective, how long would it be? How much work would a participant have to put it to get any real benefit? There are entertaining videos on YouTube that supposedly help foreigners understand Australians. They are cliched, reliant on stereotypes and, finally, ridiculous. They provide some benefit, but the best message is ‘don’t expect all Australians to conform to the stereotypes’.
In fact, imagine any theme you care to, and ask yourself how much behaviour changing content you could get into a ‘course’ lasting, at the most, 2 hours – as a once off? Exclude any theme that triggers intense emotion or self-interest, of course.
So, Exactly, What is Disability Awareness?
As a person with a mobility and grip disabilities I can have a sense of the lived experience of having disability in terms of the purely human experience of exclusion, inaccessibility and a lack of empathy. But I have also experienced kindness, sensitivity, concern, and respect.
Disability can confer inaccessibility and exclusion as a consequence, if the environment is unsympathetic – quite apart from any attribute of the disability itself.
My disabilities have no impact if I am sitting in my lounge room watching television on my chair; and having a coffee from my mug (double walled stainless steel). My home environment is set up to minimise inaccessibility. The same experience at another person’s home may be very different – their chairs may be too low and soft for me to get out of, and all their mugs may be ceramic and too hot for me to hold. Despite the warmth of the hospitality, I am ‘disabled’ by the environment.
But my host was unaware. They did not understand how my disability might express in their home. Expecting that they would be aware places an unreasonable burden on them. It is up to me to let them know what would impact me, and to make an assessment about whether any attributes of their environment are a deal breaker about visiting.
When it comes to public spaces and workplaces there is a reasonable expectation of universal accessibility, or, a quickly moving aspiration toward that. Here, two factors come into play – Inclusive Design, and empathic response to need for accommodation.
There is a variety of physical and sensory factors that can be designed into an environment that reduce the experience of inaccessibility and exclusion. Some of these, from my own experience, include ramps or lifts to supplement stairs, chairs in waiting areas that are not too low or too soft, alternatives to ceramic cups and mugs (sadly mostly take away cups), toilet cubicles with rails for people with ‘ambulatory’ disabilities (yet to be common or universal), and the abolition of round door-knobs (my pet hate).
There is a clear domain of disability awareness in design. There are professional access consultants for this as well. Consultation with potential users is an essential. A few years ago, I spent a day in a sophisticated consultation program on the design of new Sydney trains. That got down to details like whether an emergency help button near the floor of an accessible toilet was in an optimal place if a user fell.
A short course on what goes into inclusive design and the training of access consultants would potentially convey the depth of complexity of the design field. Awareness of complexity is a good thing if it excites awareness of a need to be more alert to the wisdom of not making assumptions. In design, awareness of disability is essential to arrive at inclusive accessibility. But this is a professional area most of the time.
Disability that is permanent also informs short term and situational inabilities that can lead to exclusion. So, disability is a reference point for inclusive design, but not the only thing it is about.
A course introducing Inclusive Design concepts helps participants understand how to learn to think inclusively – as a discipline. I encourage this. Inclusive, or Universal, Design can alter the way we think about and act. But it takes repeated exposure to lock in those changes.
Then there is the non-specialist area of empathy, compassion, and respect.
Exclusion and a lack of empathy and respect are not experiences exclusive to people with disability. They are shared by people we lump into the general category of being ‘disadvantaged’ – and that’s a big group.
Disability is the only persistent human category that ticks the physical and sensory accessibility exclusion box. There are other forms of exclusion experienced by people who may be considered variously ‘diverse’ or ‘disadvantaged’ – and which may be also experienced people who also have an accessibility disability.
For me, this makes Disability Awareness about three things:
- A professional requirement for developing genuinely inclusive designs – physical and sensory – environments, tech, or systems. This is real disability awareness – where specifics of a disability are needed.
- A focus on the accessibility issues – in which case calling it Accessibility Awareness would be far better – because it is Accessibility, not the Disability, that merits awareness.
- Or it is about inclusion, which impacts many people we describe as ‘disadvantaged’ or a minority member of a ‘diversity’ group. In which case let’s call it Inclusion Awareness.
For the majority of people with disability I want to suggest that Inclusion is the key concern. If that is fixed, the problems about accessibility have a better chance of being addressed. We are kinder to people who are included.
The Importance of an Accommodation
The buzz word in disability inclusion is ‘adjustment’. This is fine where some formal process is required to make an actual adjustment to what is otherwise normal or business as usual.
Accommodation is a ponderous word that I feel obliged to use because no other simpler word comes to mind. The word has a few meanings stemming from the Latin root – accommodare – to fit one thing to another. The Oxford Dictionary says it is, among other things, “the process of adapting or adjusting to someone or something.”
I want to focus on the idea of ‘adapting to someone.’ This is something we do all the time as we respond to the diverse characters and characteristics of the people we live and work with – and fail to do quite often as well. We fail when the adaptation required of us is either thought to be unreasonable or too hard.
Not so long ago I asked a speaker to repeat what they had said several times. On the second time they snapped “Are you deaf or something?” Did that matter? They were communicating something, and I could not discern what it was. Whatever the reason (my alleged hearing loss, background noise or unclear speech), the speaker was unwilling to gracefully adapt to my need. That was odd, because they were wanting to communicate something to me – but only on their terms, it seemed.
A request to adapt can be interpreted as a criticism, an act of self-indulgence, or an impost. It so often becomes all about the person being asked to accommodate something, rather than the person seeking the adaptation.
Disability is so often where the natural willingness to adapt falls down. A person with a sensory disability may wish to sit closer to a speaker or white board or screen. Sometimes this can become a drama that draws attention to the person seeking adaptation in an unwelcome and embarrassing way.
I want to propose Accommodation Awareness – just do it with good grace and spirit – and trust that the person asking has good cause. Respond to sincere need, not the reason for the need. Now and then responding to one person’s need will generate a counter and contradictory need in another. A request to turn up the air conditioning, for example, is likely to be met with a request to leave it as it is. Life’s complex at times. We have to handle it gracefully.
Psychological Disability
This is a messy and complex area that must be considered here. It is one area of disability I do believe that specific awareness programs must be provided – mostly to dispel harmful misconceptions.
I am not qualified to express any clinical opinions here. I have been around ‘mental illness’ most of my working life in some form – from working in psychiatric hospitals to co-ordinating care and accommodation needs of people with disability who lived in what were once called licenced boarding houses. I have friends and family members who live with PTSD, depression, and other conditions. So, these are observations based on personal experience.
The term ‘mental illness’ is often misleading and damaging. For starters the most common psychological conditions in Australia are depression and anxiety. Neither are ‘mental’ states so much as ‘emotional’ states. There are conflicting views about this, of course. But they are more rooted in debates about what constitutes mind – a philosophical one.
My question is whether it serves any good purpose to infer that depression or anxiety lead to strong impairments of cognitive functions because of the language used. I do not think so.
Paradoxically people seem quite content to deal with anxiety and depression, or worse, if it does not carry a clinical tag. As DEN chair, I had reports of conduct that should have triggered concern, and would have, had the person not been a manager. These reports included open verbal abuse of staff, behaviour so unempathic it should have set off alarm bells, and behaviour that was openly intimidatory and threatening. Even when senior management was made aware, no action was taken. Perhaps news that the manager in question had a diagnosed ‘mental illness’ may have triggered some response.
From my experience of working with staff who are open about their clinical diagnosis, an occasional request for an accommodation may be sought. But asking for it can open a pandora’s box of misunderstanding, discrimination, and unempathic and irrational response.
An individual’s mental stability, performance and competence can become subject to doubt. Empathy and concern for their welfare is cast aside. The trigger seems to be the fact of a clinical diagnosis.
I would like to see a course/program that addresses misconceptions and fears about what we call ‘mental illness.’
Conclusion
Disability awareness is not only a misunderstood complex matter, it is rarely actually the main concern.
If agencies attended to inclusion as a general principle, they will generate the desired change faster. However, inclusion must be first and foremost a human response founded on empathy, compassion, and respect – the ‘heart’ qualities that are at the foundation of relationships.
While there is primarily a rational reason for inclusion (legislation and policy), it will work only minimally as a purely rational exercise. The reason we have that rational, or ‘head’, imperative is that all the conventions, legislation, and policies were predicated on ‘heart-based’ motives. We must never forget that. Inclusion is driven by empathy, not reason. Reason simply confirms it.
Inclusion makes good sense in a purely utilitarian way. It means an agency can tap available talent in a community, regardless of the diversity attributes of individuals – including disability.
Article 1 of the Convention on the Rights of Persons with Disabilities says:
The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
This is an affirmation from our collective heart. To the extent that it is rational statement, it is only in service of that heart statement. The purpose of any kind of awareness training or program is to lead to inclusion. It is not to meet a compliance requirement. To that end we must understand that it is awareness of the heart, not the head that is to be achieved. This must inform all our ‘awareness’ efforts.
Any change to behaviour requires repetition. Inclusion, based on respect for the “inherent dignity” of people with disability will work best when a community or culture has a habit of being inclusive to everyone.