The soft discrimination of low expectations

Introduction

I am guilty of this. A former colleague with a disability recently chaired a major meeting and the report that came to me was that he did a very impressive job. 

I was delighted. But on later reflection I was forced to confess to myself that I had never imagined him doing that role. Then I realised that I didn’t know enough about my former colleague to have formed an opinion based on knowledge. I had simply allowed a sly and sneaky prejudice to impose a prejudice upon my judgement. 

The prevalence of low expectations

When I came back to work after an 18-month absence after recovering from GBS I had no idea what I could do, but was determined to find out. My manager decided she knew and helped me out by doing things she thought should be done – without telling me. 

The thought wasn’t appreciated. What appeared to be consideration for my limitations at the time was a presumption without consultation. On one project this ‘assistance’ ruined a tracking system I had set up to ensure the security of over 130 tender responses. It took several days to get things back under control – with the aid of a temp worker who had been engaged with no assessment of my need. As it happened, I did need her to help me fix the wrecked tracking system, but not much else – other than carrying boxes of responses. 

Just ask

Anxiety about how a staff member with disability will perform is understandable. But converting anxiety into intervention without confirming that there is even a problem makes the issue more about the anxious manager than the person who should be the focus of concern. 

It’s simple just to ask whether and how a disability might impinge upon the performance of a task. That said, it’s not an easy thing to do if you haven’t established an empathic relationship with the staff member. 

There may be support needs, but they also may have nothing to do with the disability. The disability may trigger only a need for an adjustment or an accommodation to ensure accessibility. 

The risk of low expectations

I think we can all be guilty of low expectations – but that isn’t the problem. It’s more that we remain unaware of them and that we modify our relationship with a colleague with disability accordingly. 

The worst case scenario is that we create a distance between us and them. We assume but say nothing. They sense our distance and assume they are not liked, respected, or well-regarded and keep their distance. 

It’s a standoff in which neither party is aware of how the other feels. The consequent relationship is cool. This matters because relationships in a team are ideally warm – mutually respectful and professionally and personally empathic. Sometimes there is more warmth between a manager and team members who have things in common on a personal level. This can magnify the sense of coolness for anyone who is already in the outer zone of inclusion. 

Low expectations lead to isolation

Probably the most persistent issue I dealt with as DEN chair was the sense of isolation and ‘othering’ that came from the imposition of presumptions upon the colleague with disability. This included a persistent presumption of inability or unwillingness to be compliant with what were thought to be ‘reasonable’ expectations. 

A vision impaired colleague discovered their manager had directed team members not to help, so they could learn to be more independent. In early 2020 I arranged a consultation between staff with sensory disabilities and IT staff. There were 5 blind colleagues who came. Two had dogs and the others relied on white canes. All came by themselves. I am not sure how much more independence would be expected. This manager was unable to distinguish between can’t and won’t.

A colleague with a visible mobility disability was, despite their substantial experience, overlooked for a wide variety of opportunities that were offered to less experienced team members. The disability was visually confronting to some.

A colleague with impaired hearing was excluded from roles requiring interaction with others and given relatively simple tasks that could be performed in isolation, despite their significant level of education and ability. This created a negative feedback loop. The colleague with disability lost enthusiasm for the workplace environment and that lack of enthusiasm was interpreted to be evidence of low ability. 

The absurdity and injustice of presumption

A few years ago, I visited an office I used to work in for a meeting. There was a fire drill. Sirens were going off and people were making their way to the fire stairs with the usual level of enthusiasm. 

I don’t do fire stairs, so I sat patiently waiting for a fire warden to arrive. I had my Canadian crutches leaning on the wall beside me. A woman approached me and told me very slowly that I shouldn’t be alarmed. There was no real fire. It was just a practice in case there was a real one. She then asked where she could find my carer. I smiled and thanked her. I then told her I was a Senior Project Officer and I worked for the department. Very red faced! She quickly left. 

Tales of presumptions of cognitive impairment on the evidence of a physical disability are common. 

But even more common is the assumption of cognitive impairment when a person discloses a ‘mental illness’. The term itself is partly to blame, but the larger problem is the lack of understanding of what it means. We can try to sugar-coat the message by renaming it – a psycho-social disability for example. But the knife of discrimination born of ignorance still cuts deep. 

I can’t think of a more widespread and persistent blight of low expectations than those imposed upon colleagues who let it be known they are living with a psychological injury. It may be depression or anxiety (the 2 most common) but they do not lead to cognitive disability or conduct disorders. 

The hard discrimination of low expectations

Many of us live with psychological injuries that will never trigger a need for us to get a clinical diagnosis. As well as living with the aftermaths of traumatic experiences we go through rough times in our lives when we struggle to stay focused and motivated. Sometimes we can barely hold things together. 

I saw this just recently when my stepfather unexpectedly died. I have 4 siblings, 2 of whom were his children. We all reacted to his death in different ways. For one sibling it was a particularly strong existential shock and their ability to work was wrecked for a few weeks. 

We understand that ‘normal life’ has many challenges that can be difficult to meet with aplomb. Mercifully most of us have an off switch which triggers after a decent interval. But some live with a broken off switch. They feel bad persistently and they struggle routinely to maintain an even keel. 

We’d never know who they are because there is no visible sign. They may or may not have decided to get clinical help. And if they do, they are unlikely to let us know. 

But the few who do are so often hit with a response that is bewildering and distressing. Their competence, hitherto unchallenged and even lauded, is called into question. 

The ignorance and unreasoned fear of others is projected upon them – and they really are not the ones with a ‘disabling’ problem. The loss of empathy and compassion is a far greater concern.

Conclusion

Low expectations are triggered for a variety of reasons, sometimes justly, but often not. Disability is only one trigger. Racial, gender and religious discrimination can do the same thing.

We humans are constantly judging and assessing others for a variety of reasons – mating, competing, exploiting, friendship, cooperation and so on. 

In the workplace assessing competence is necessary – and it goes both ways. Managers must assess the competence of their team, and team members must assess the competence of their fellow team members and their manager. It goes on all the time. 

It is a fundamental insight into our psychology that we over-estimate our abilities. When we judge another person there is a high chance of being wrong – and having no idea we are. 

It is also an established insight that leadership roles trigger less empathy for people in subordinate positions than for fellow members of the leadership group. 

Colleagues with disability are subject to the blight of low expectations that unjustly impose upon them restrictions on what they can do well and the esteem in which they are regarded. 

This can become a feedback loop that traps them. Not everyone with a disability is aware their performance, status and engagement are impacted by how other people have imagined their ability and capacity.  As it impacts them, the negative experience can trigger responses that become a reinforcement of the low expectations. 

Few managers are aware of their role in initiating and perpetuating this negative feedback loop. Staff with disability who are subject to low expectations and the discrimination that brings may not always react with an articulate and confident response. They may be angry, frustrated or disappointed and show it – inviting further negative feedback. 

When a colleague with disability tries to step out of the low ability mould that has been imposed upon them, their action is not always welcomed. Sometimes it is resisted – and firmly so. 

This recent news about my former colleague reminded me just how easy it is to impose that ‘soft discrimination of low expectations’ and it was an even bigger reminder that none of us are immune from being the one who makes that imposition. That’s not a great thing for a champion of inclusion.

But that’s the reality. Whether you identify as a champion or an ally your normal human responses remain active and in need of periodic self-critical reflection. That’s a hard habit to develop in isolation. We are better off engaging with those we are reflexively likely to impose our low expectations upon. We are better off in a community which accepts the need for, and practices, self-critical reflection as part of process of creating inclusive workplaces. Such a community is created intentionally. It does not evolve independent of intent.

My Favourite Tools

Introduction

Having impaired grip and manual dexterity means that much of what was accessible becomes impenetrable and unusable. Over the years I have accumulated a small number of essential aids that help me crack all forms of packaging, carry stuff, and generally encounter life with a sense of comfortable and dignified utility. 

Multigrips

It is astonishing how necessary grip strength is. There’s a mechanical element to packaging with a degree of difficulty that is set several levels higher than that attainable by the manually less competent.

These are tools with a sliding component that varies the size of things that can be gripped. I have one in the kitchen, one in the car, and two in my room (large and small versions). I use them mostly to open bottles and any containers with small lids that don’t yield to gentle efforts – especially those fiendish ‘childproof’ ones. I get that keeping some products away from kids is sensible, but in a paradoxical way this safety feature also makes the product inaccessible to intended users. You can find examples of multigrips from Mitre 10 here.

I also have an array of jar opening tools which can be found at most disability aid stores. They are not, however, as flexible as a multigrip. 

Rock climbers folding knife 

Knives are handy for gaining access to any number of forms of packaging or dividing things others can simply tear or pull apart. The rock climbers knife folds and opens without needing to grip the blade the way you do with a regular pocketknife (flick knives excepted). They are designed to be used while wearing gloves. I can open a blade by resting the knife on my knee and using the heel of my hand to twist the blade out.

I have one in my outdoors shoulder bag, so it’s always with me when I am out – something airport security people were not happy with [that caused all kinds of bother when I insisted it was a tool, not a weapon and it had to go into my luggage – I hadn’t flown for 20 years and was unconscious of the anxieties]. I have another in my room with a cord so I can put it around my neck. Here’s an example of this kind of knife.

Neck pouch for my phone

I can’t do pockets so carrying my phone can be a challenge. My Tasmanian sister made me a fabric pouch (actually 2 – because they do need to be washed) with a strap I put around my neck [thank God for necks – I hang a lot of stuff round mine, and I’d be lost without it] so I can carry my phone with me at all times at home. No, I am not a phone junkie – it’s my universal information device and emergency communication means. I move too slowly to leave a phone lying around, and even with a Bluetooth headset I would have to stay in range – which is tricky in my home because of what the walls are made of.

Shoulder bags at home

The same sister made me a couple of soft cloth shoulder bags. Because I use at least one crutch at home I have only one hand that doesn’t work all that well to carry things. That doesn’t leave me with much capacity. The shoulder bags make a huge difference. I can carry 2 things at once, often more.

On this theme I had a large shoulder bag made by a former backpack maker so I could get a decent number of things at the supermarket at one go. This saved the headache of wrestling with shopping trolleys, and also meant I was independent in getting shopping from the car to the house – in one trip.

Thermal mugs

Regular ceramic mugs are useless for me. First, I can’t use their handles – they just slide through my fingers. Second, if I hold the body of the mug, I get heat stressed fingers. 

Back in the mid 1990s I bought a double wall stainless steel mug which I have loved and used long before I got GBS. It’s still great. I can slip fingers between the body of the mug and the handle and there’s no problem lifting or holding. I have never found anything like it since. 

Also, before GBS, I bought a Thermos travel mug. It has a screw on lid – so I can fill it with coffee, slip it into my shoulder bag and carry something else from the kitchen (like cheesecake). The handle is open at the bottom and the gap is wide enough for my hand to be comfortably supported as it grips the insulated body. This is a no fear of dropping mug. Here’s a current version from Thermos that has the right handle and is double-walled stainless steel.

When I was working in an office I had a double wall titanium tumbler – 450ml. Completely insulated, light and fairly easy to grip because of its size. Titanium products aren’t cheap, but they are light, and they don’t break. I recently bought a plate that is way easier to carry because of its shape. Here a link to a titanium cup. The link can also take you to plates.

Trainee chopsticks 

These have a hinge-like springy device on the top, so gripping and using them is a breeze. It’s what they give kids, apparently, but they are also marketed for adults, so you don’t have to be the only person with a fork – and still preserve your dignity. Here’s a set from Amazon.

iPhone

What praise can’t I heap upon this wonderful device? It was introduced as I was recovering from GBS and made so much of my life livable in ways unimagined before. Calling it a phone is like calling your home a kitchen. The phone is one of the lesser functions. It’s my diary, my notepad, my clock, a primary part of my music system, my audiobook and podcast player, my email and internet, my falls detection and emergency communication device, and etc. 

Aftershokz headset

Blue tooth headsets have been a godsend. I am no longer tethered to the device with cords that are a nightmare when walking with crutches. And anything you stick in or over your ears has to be removed for comfort, functionality or safety. 

My Aftershokz Opencomms are bone conduction, so the sound transfer happens via the skull bone in front of the ear. They are put in place in the morning and stay all day hardly noticed. 

No more switching in and out of the ear, no impediment to hearing. They are safer, more functional and less intrusive than any other headset I have used. I have had AirPods and still have a Bose over ear set I prefer for listening to music. 

And no, I am not being sponsored by Aftershokz. I mention them by name only because I am not aware of other bone conduction sets and can’t speak to them. I will never go back to in-ear devices.

Conclusion 

I spent my youth in the Tasmanian bush. When you have to carry everything, you need you get fussy about what you need and what you carry. It’s got to be necessary and functional.

A lot of the things I now use and esteem have come from camping and bushwalking retailers like Mountain Designs,  Drifta and Alton.  These products are light and tough. They are not cheap and are over-specified for home use. But they suit my grip and dexterity needs without screaming ‘Disability’. They are more about universal design. They call out ‘Utility’.

I am, of course, obliged to seek out disability specific aids, because some needed features are compensatory and would impede ‘normal’ capacity. But it is surprising, when you go exploring, how often products that are designed with a specific purpose in mind have a universal application.

There’s a difference between the dignity of independence and dependency that comes down to what tools we can discover or craft – and whether their use signifies disability or utility. It’s a huge difference at times.

Help

Introduction

I have been rediscovering John Farnham. Well, I have been doing penance for ignoring him in the 1980s – I was in a different cultural space. His performance of Help in company with the Melbourne Symphony Orchestra 1989 is something special – see https://www.youtube.com/watch?v=dv54giOSRKs

Of course, I know the song as the Beatles original [1965], but as the lyrics say that was when “I was younger, so much younger than today / I never needed anybody’s help in any way.” And now “… those days are gone and I’m not so self assured / Now I find I’ve changed my mind I’ve opened up the doors…”

The personal shift, in acquiring a disability, is profound…and humbling. You go from the illusion of independence to being utterly reliant on other people for your survival in this world. The recovery of some measure of competence was, for me, a slow struggle. I needed help along the way.

Listening to John Farnham, now multiple times, reminded me of that journey. I want here to reflect on disability and the idea of help.

Get out of our way

Before I got hit with GBS in April 2008 my only sense of disability outside the professional sector in which I worked was an assertive and cranky sense of frustrated impatience. I had no sense of connection with those who made such demands back then. I do now.

I recall a publication called Made You Look which featured a woman with a double below amputation [if I recall correctly] holding a skateboard. Back then disability was about getting attention – getting people to take the reality of being a person with disability seriously.

The unspoken message, well it was at least poorly articulated, was that ‘we need your help to make our shared world as accessible to us as it is for you. We are not asking for anything extra or special – just equal opportunity.’

I think now that we have lost that key message of ‘help’, buried it in blather. My favourite inclusive podcast is Melinda Briana Epler’s Leading with Empathy & Allyship. The essence, the heart, of Melinda’s show is that the excluded need help to be included. We can’t do it on our own. It’s a partnership, a collaboration, an alliance.

Exclusion is structural in physical, cultural, and psychological dimensions. It is not, and was not, inadvertent. It was intentional and part of the foundational philosophy of our culture. The Old Testament says, in Book of Deuteronomy: Thou shalt not sacrifice unto the LORD thy God any bullock, or sheep, wherein is blemish, or any evilfavouredness: for that is an abomination unto the LORD thy God. [Deut 1 [1]]. In contrast in 2 Samuel we find:  But in all Israel there was none to be so much praised as Absalom for his beauty: from the sole of his foot even to the crown of his head there was no blemish in him. [Deut 17.1 [1]]

Putting away the blemished is what we did, as a civilisation. We were responding to a religious ideal that was, for centuries, one of the guiding principles of our culture. Things have changed. We have matured morally to the point where we cast off values formed over 3 thousand years ago. But values baked into our culture over such a span do not dissolve so quickly, even under a shower of moral enthusiasm. Change is slow, and we need your help to maintain the momentum. 

Now the message isn’t “Get out of our way.”, but “Please walk with us.”

Asking for help isn’t easy

Way back in the late 1980s I, and a few friends, connected with a woman in a wheelchair [that’s how we saw her]. She was living in an isolated rural property, and we tried to help her, but her reactions progressively put us off. Now I am ashamed of abandoning her, but back then she exhausted our well-intentioned, but maybe inept attempts, to be her friend.  That failure haunted me. What happened to her? I have no idea.

But I learned, I think, from that experience, that asking for help must come from a foundation of understanding that because disability is part of the spectrum of being human it must be a shared experience. We must reach out and you must respond with an embrace. Back then both of us did our parts badly, ineptly. The need for help was there, and so was the desire to help, but we managed to screw things up badly – on both sides.

Reaching out isn’t a signal of weakness, but a desire for mutuality, as is the response. When I was paralysed from the neck down for several months, I lost no sense of my vital humanity. I was complete and full of integrity as a person. That was a fierce determination at the time. I was shocked by my sudden reduction to being little more than a flaccid body with tubes inserted on the outside. Inside I was undiminished – freaked out but determined to go on.

I survived because I got help to breathe, take in nourishment, expel waste, and to begin to recover capacity for coherent action. Later in the Rehab Ward I got help to move in an increasingly effective way.

Help isn’t about can’t, but need and aspiration

We help each other all the time because we want to foster success. Its not about responding to weakness but building on strength. But if the foundation of action begins from weakness [of body], as was my case, reaching out is still an act of strength [of spirit] – albeit at an early stage. For me being able to reach out was literally the product of 4 months of physiotherapy to help move my arms. It took longer to be able to grasp what I was reaching for. 

We humans are naturally communal. We are hardwired to belong, to be included. When that doesn’t happen, it triggers the potential for a trauma reaction.

People with disability can experience such a prevalence of non-responsiveness to their efforts to reach out that they cease to believe they are going to get a response.

When I was chair of the DCJ DEN I once said that we were not “a union of cranky cripples.” In my time as a union delegate often the militant demand for [a genuine] entitlement generated more conflict, wasted more time, and damaged more relationships than any form of relationship other than one based on intentional conflict. We were all pretty inept back then. Even the goodwill that offered was often squandered in a fog of self-righteousness. Struggle can become the fabric of identity and when that struggle fails to rise above anger and conflict the identity is injured and impaired.

My point was that pursuing a single focus on entitlement delayed or denied was counterproductive. The whole purpose of the DEN was to stimulate the desired changes, but that includes reminding the organisation and our colleagues that we were one of them – we belonged. Asking for help is what you do if you belong. Demanding an entitlement is what you do if you don’t feel included or embraced as ‘one of us’. That’s where we needed to find agreement – among ourselves and with our colleagues.

The goodwill toward staff with disability became powerfully evident to me. There was, as there is in every community, a portion that was disinterested, and a smaller portion whose attitudes were bordering on, or were actually inimical.

We needed to harness that goodwill to work on the more complex areas of behavioural, culture, policy, and practice change. Even with all the goodwill in the world, these are still slow evolutionary changes that require attention, commitment, and effort – the Help needed.

Reflecting on asking and offering 

Then there’s – And now my life has changed in oh so many ways / My independenceseems to vanish in the haze / But every now and then I feel so insecure / I know that I just need you like I’ve never done before. This would have been my theme tune in April 2008. But at the time I was incapable of asking for help or music. My need for help was total. It was given with such dedication and determination, thinking about it 15 years on, still triggers a deep sense of gratitude. Mind you, it wasn’t all niceness. There were some instances of contest over attitudes and values along the way.

The contests were caused by both sides – health care management and a fiercely determined patient. There was mutual misunderstanding, although the cause of some contestation was somewhat more serious.

I was greatly interested, then, in observations that sympathetic executives and managers did nothing because they feared offending by engaging staff with disability ineptly. I understand that. I have felt the same thing myself – but quickly overcame it because I also had a disability, and I could dare to inadvertently offend. But that’s not a reflection of a helping culture – asking and giving. Rather it’s the fall-out from a sense of entitlement coming from a place of frustration and exclusion. It’s not a good thing that those who want to help fear saying so, lest they offend.

How can we expect offers of help if the person extending a hand fears it might be bitten. That kind of offer needs the same safe place we need to create to ask freely and fearlessly – from inside the embrace of ‘us’.

Conclusion

People with disability are not victims of their disability. They may see themselves as victims of fate or destiny, though. They may also be victims of a misguided and anachronistic idealism which devalues those who are blemished and champions the unblemished. But this is a long way from the inclusive and supportive sense of community that is hardwired into our psyches, and our brains.

We are recovering from that, progressively restoring the inclusiveness of our sense of community. But it’s a slow business – as overcoming any bad habit is.

The lyrics of Help can be sung only to a friend – to one of ‘us’. There is a song called I Will Help You. The lyrics are pretty sentimental, but they say, in part–  I will stand by you / I will help you through / When you have done all you can do. The last bit is bad in this context, but then it gets seriously saccharine.  Its more about substituting than collaborating – the intent is good, but the insight is wanting.

Maybe that’s the point. We ask for and offer help in a muddled way and the response often fails to interpret what we meant to say. The solution is maybe to collaborate on crafting lyrics to a new song – Work With Us Together [okay awful title, but you get my drift].

Below are the lyrics to the original Beatles song – but do watch John Farnham’s performance, and maybe sing along.

Help, I need somebody

Help, not just anybody

Help, you know I need someone, help

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

And now my life has changed in oh so many ways

My independence seems to vanish in the haze

But every now and then I feel so insecure

I know that I just need you like I’ve never done before

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me

When I was younger, so much younger than today

I never needed anybody’s help in any way

But now these days are gone, I’m not so self assured

Now I find I’ve changed my mind and opened up the doors

Help me if you can, I’m feeling down

And I do appreciate you being round

Help me, get my feet back on the ground

Won’t you please, please help me, help me, help me, oh