Author: mp2201

Introduction

I take early morning walks at Wentworth Falls Lake in the Blue Mountains. There’s a toilet block there with a few design flaws in terms of accessibility in my case, but it’s okay. 

There are 2 male cubicles. One is ambulatory. The other is not. It is wider though. That means the ratio of ambulatory cubicles to regular ones is 1:1 – far higher than you’d find anywhere else. 

But why both cubicles are not ambulatory is the thing I want to discuss here. 

Toilets are not my favourite topic. Its just that an absence of inclusivity and accessibility can be limiting and sometimes distressing – and very exclusionary.

Why inclusive design matters. 

When it is possible for a single design feature to be in service of many, most, or all people, picking the all option makes the most sense. Of course, all is an ideal that may not be met – but it’s good to aim for it. 

For example, a sliding car seat can meet the needs of all but the very very tall and very very short. But within the practical limits of car design, it shoots for all. It costs more to make a sliding seat than a fixed one, but the benefits are worth the cost. 

Why wait more than you have to, or can?

There are times when there is a high demand for toilet cubicles and when this happens people with no disability will use accessible toilets. It’s bad enough, absent an ambulatory cubicle, that one may need to wait also because for some reason it’s okay to make an accessible cubicle do double duty as a baby changing station. Still, when you don’t have an accessibility need, the options are 100%.

But the flip side doesn’t work if you need the accessibility features. There is often only one option – and access to it may be impeded. 

These days this becomes an even more pressing issue because toilet breaks have become havens where a 20-minute head break on one’s phone is not uncommon. Time flies when you are having fun, but not when you are waiting on the person having fun.

So why not?

Why did the council who constructed the toilet block at Wentworth Falls Lake not make both cubicles ambulatory? It wouldn’t have cost much extra to do so. 

The answer is a fixed mindset rather than a conscious decision. Having one ambulatory cubicle seems to be not a minimal requirement, but the requirement on the presumption that this represents the least number to meet the percentage of users likely to need such a feature. You’ll find one ambulatory cubicle among five or more most places.

In this thinking is that an ambulatory cubicle is added because the others are exclusive, rather than inclusive (pause, by the way, to reflect that exclusive is often a term of privilege). But an accessible cubicle is inclusive only if it is available for use. 

It’s not uncommon to find the ambulatory cubicle is occupied by a person who does not need this feature while other cubicles are vacant but unusable to the person who needs that accessible feature. 

The absence of inclusive/universal thinking is what perpetuates fixed and narrowly focused thinking. It isn’t that the council did anything wrong or mean. What it did was right in the context of complying with standards. The standards are not, however, inclusive on a practical human level, even though that’s the intent.

The importance of universal design 

If all cubicles are accessible to ambulatory standard, we are all on an equal footing. If only one is, it can magnify the inequity. It may cater to the minority who needs the accessibility feature, but because access to an accessible cubicle is not assured at the same rate all cubicles are accessible to able-bodied people there is no equity of access.

Of course, a solution might be to ban able-bodied folk from using ambulatory cubicles. But who would police that? Telling an able-bodied person that they may not use an ambulatory cubicle when they have an urgent need would not be kind, and they would not comply. This is a persistent issue for fully accessible toilets. When you gotta go you gotta go. It would be nice if this was a universal and realizable right. This also applies to those 20 minute head breaks, apparently.

But nobody needs to tell a person with disability they cannot use a regular cubicle. Yes, some folk cannot get off a toilet seat without aids, and asking a stranger or workmate to help isn’t really a desirable thing to do, besides you can’t get up to unlock the door. 

An accessibility feature in all cubicles is the only fair thing. 

You’ll find this when you go driving around NSW. There are roadside toilets that are single fully accessible options. That’s a mathematical logic – if one – only go universal. So why not go 100% ambulatory accessible with all cubicles to get as close to that same universality as possible? Its an equity issue, not a math one.

Of course, retrofitting current cubicles to make them all ambulatory accessible isn’t always practical. There are size issues to be considered, given you need room to fit supports. But if you advocate for a greater level of inclusion in the loo, don’t be quickly put off by protestations of impracticality. It ain’t always so. Ask for compelling evidence. Sometimes a can’t do attitude masks a won’t do one.

Conclusion

Universal design not only makes sense, it establishes an argument for a sliding scale of possibility. You start off with all and if that’s not possible, go to most and then finally to many. 

Exclusive design is a conceit and should be reserved for private settings for people who know nobody who might need an accessibility feature – including themselves – as I found out in 2009 when I returned home after 10 months in hospital to realise just how exclusive my home was.

There are good reasons to make private and shared domains inclusive – we never know when we, or folk we share our lives with, might need these attributes. There are good reasons to learn to think in terms of universal/inclusive design as the standard mode. Here’s a good place to start https://centreforinclusivedesign.org.au/.

Equal loo rights are for all of us!

Introduction

GBS has left me with weak and impaired grip in both hands. My fingers and thumbs have impaired movement. When it comes to cooking and eating what I can hold and manipulate with ease and comfort is limited. 

Sometimes there is nothing worse than having to buy an obvious disability aid because it screams disability as a constant reminder and is a signal to observers. I have a thick-handled spoon that does that. I haven’t been able to find an alternative spoon design. And sometimes there simply isn’t any option but a specialised disability aid.

Most kitchen and dining equipment can’t be modified away from being what they are. I found this with frying pans where the only thing I could do was be careful about the shape of the handle. I recently bought a small frying pan with a handle that was too smooth and round for my grip. I couldn’t tilt it to transfer the contents while it was hot.

I also learnt this lesson when my housemate bought a new electric kettle with a handle that arched over the top. The old kettle had a side handle I could grip. Now I have to tilt the new kettle from the edge of the sink to fill my mug. I can live with that work around, but it will probably have to have an accident so I can replace it with a side handled model.

Over the years I have been acquiring regular things that suit my accessibility needs to a high degree. Below are a few favourites. 

If you don’t have a personal need, you may know others who do.

Victorinox 11cm serrated steak knives

I bought these knives before GBS. I haven’t used a regular knife since. The handles are thicker than regular knives and are made from some kind of plastic that gives a non-slip grip. The blade has some give that I didn’t value until I tried a regular knife. The knives I have are well over 15 years old and still cut better than a regular knife.

I have tried regular knives, including regular thick-handled steak knives, but none meet my needs the way the Victorinox knives do. Interestingly, thick-handled steak knives don’t work for me the way the thick-handled spoon does. The grip is different.

Ultra-light titanium plate from Alton

This is a 22cm wide and 2.8 cm deep plate that weighs only 132g. I struggle to hold a ceramic dinner plate or those confounded wide bowl-like plates that are popular. Its bad enough trying to carry one empty but is seriously risky with food in it.

This titanium plate is a little smaller than I’d like for an all-purpose plate, but it still meets 90% of my needs. It’s so light I can carry it with a decent amount of food on it with no worries.

The plate isn’t cheap at $49.99, but its unbreakable and its ease of use because of its weight make that money well spent.

Ultralight Titanium Plate

Double wall titanium bowl

I found one on Amazon. There were several designed for camping with widths between 12.5cm [Boundless Voyage $36.00] and 14cm [EPIgas $46.27]. There is a Snow Peak bowl with seems to be somewhat larger, but the size isn’t stated. The price [$84.54] is the main hint that it may be wider and deeper. 

The bowl is very light, and the double wall insulates from heat and cold. I decide the cost was worth it to have a bowl that was easy to carry when loaded, easy to hold, and unbreakable. The texture, too, reduces the risk of slipping from the hand.

Ultra-light cutting board from Alton

Cutting board come in all shapes, sizes and weights. Because I have to sit on a chair in the kitchen, I am often reduced to putting a cutting board on my knee. My housemate prefers cutting boards that are thick or have stubby legs. Reaching the bench top from my chair comfortably means even an extra cm can be a problem. 

The Alton cutting boards are made from food grade HDPE and come in 2 sizes – 21cm x 14 cm and 29cm x 21cm. They are at the most 2mm thick. I bought the larger one. It is stiff but not rigid. It is fine on my lap for a lot of things short of vigorous cutting and chopping. A rigid board is needed for that.

Ultralight Cutting Board

Conclusion

Impaired grip and manual dexterity are a pain in the butt. It is astonishing how many things are difficult to access or use without some kind of tool or an alternative design. I have written earlier about my climbers’ knife which is my primary accessibility tool.

Some regular things are great accessibility aids because they are designed to solve functional problems. Like the way my climbers’ knife’s is designed to be opened wearing gloves and hence is kinder to impaired fingers, camping food preparation and dining equipment address weight and robustness issues that can be translated into serving the needs of people with disability.

We must remember that activities that require significant ability create tools that also serve the needs of people with disability. They are often designed for ease of use under less-than-ideal conditions. There is a good feeling that comes from using a well-crafted ability-based tool or utensil that meets the needs of a person with disability – as opposed to relying on disability specific aids. I can live happier if all I need is only one thick-handled spoon.

Go for good design first. We must learn to think in terms of universal and inclusive design when we evaluate how useful something is. This is an ongoing opportunity. After buying the frying pan, I became more conscious about the shape and texture of handles – and now, of course, the position.

Also, let’s not think that just because a person has a disability the solution to their need for access or inclusion is an adjustment or an aid. It might just be better, more inclusive, design.

Introduction

In a couple of earlier posts, I explored what can go wrong and right in a job interview when the candidate experiences anxiety. I looked at the ridiculous ‘pressure test’ scenario of having 15-20 minutes to prepare responses to 4-6 questions.

I entirely get the heroic game-playing types who laugh at the sensitivity of candidates who don’t handle interview processes well. I am one of those folks who don’t do interviews at all well. The derisive observation “If you can’t handle the heat, get out of the kitchen” has been employed as a justification way too often. But job interviews are not a game or a competition testing for attributes not related to the role. 

This dismissive attitude has a fatal flaw as an argument. Most roles don’t rely upon this pressure scenario. In fact, they are more likely to rely upon well-researched, well though through, and calmly presented evidence. There are roles and situations when rapid responses under pressure are absolutely necessary. I am not denying that. But it is not the norm in the public sector that such capacities are preferred above calm, rational, well-researched and well thought through responses.

I have been an awful candidate many times. I have gone into interviews with several pages of incoherent scribbles that represented a needlessly frantic efforts to get down what I thought I wanted to say. I don’t know why I flip out. Ninety per cent of the time I knew the role inside out. I should have been the obvious candidate. But I failed.

A large part of the problem is recruitment practices are really bad. I spent 5 years in recruitment, and I believe that competent professional recruiters are way under-valued. The NSW public sector, along with many others, uses a localised DIY approach in the mistaken notion that it cheaper. That’s debatable. A single instance of recruitment costs no more than the time the panel members put into it. But the cost of the consequences of not getting the best candidate is not assessed. Some readers will instantly understand this.

I want this out of the way because what I want to argue here isn’t about making recruitment better, only fairer – and even then, to an uncertain degree. I spent 5 years in recruitment decades ago. It was awful then, and I have seen little improvement since. There are good reasons why this is so – and none of them give any hope things will get significantly better. We have incremental improvements, for which we must be grateful. Over time they will add up to a fairer system for people with disability.

The Interview from hell

A friend awakened me to the madness of the current practice. He went for a job that you’d have thought was written for him. To look at his CV you’d probably offered him the job on the spot. But the interview had several problems. The first was that the questions were very poorly crafted. All had two response demands, except one, which had three. Let’s figure this. There were 6 questions which had 13 response demands. 

My friend had 20 minutes to read the questions and prepare his responses. that’s a shade over 1.5 minutes to read, analyse and develop a response to each response element. Seriously? Yes. 

He has a diagnosed ‘high functioning’ anxiety. He can’t fairly be expected to deliver a measured response to the questions under that time stress. He isn’t stressed in his performance in his role. In fact, he is highly regarded. But he went to pieces in the interview.

He raised an interesting question when we reviewed his experience. Why was it necessary to create such a stressful environment at an interview? It was a perfectly rational question. I had no answer in defence of business as usual. It had been a long time since I had bothered to think about recruitment practices at a deep critical level. I had gone 2 decades and through at least 10 different roles without having to compete. I had competed for, and failed to get, three roles in that time, but none were critical to me.

A lot of people interview badly, including many highly talented folks. A big reason is the stress generated by the interview question preparation stage, and then being quizzed by panel members who plainly are not experienced in recruitment. In recent years I have been a ‘independent’ with disability on panels run in copybook professional ways by convenors of impressive skill.

A rational approach to recruitment – toward a fairer opportunity.

Recruitment is hard to do well. In my recruitment days I discovered just how challenging it is. Getting the right person for a job can be tricky. In the private sector you can take more flexible and innovative approaches. In the public sector there must be a uniform approach that gives everyone an equal chance. At least that’s the theory. The reality is often very different.

Having a standard recruitment method might work well if interview panel members were assuredly skilled at the job. This is rarely the case. Being on a recruitment panel should be a skilled role. But mostly it’s a DIY affair with a hit and miss outcome.

For a candidate with disability this means that are several potential pitfalls – the pressure test scenario of being given interview questions just before the interview, interview questions that may be poorly designed and a panel which may be biased as well as inept in assessing candidate suitability.

Ideally recruitment panels would be specialists with the required skills, but that’s not going to happen because of the cost. Consequently, we must think about what can be done at a realistic level.

I want to focus on the benefit of ensuring questions are provided at least 3 days ahead of the interview – but for everybody, not just the candidate with disability. Why?

Getting the questions ahead of time addresses issues for candidates with a range of disabilities – but it also confers an advantage. There’s time to research the response and to craft a well-organised response. But there is no good reason to address an issue and give an unfair and unintended advantage at the same time. If everyone gets the questions ahead of the interview the problem is solved. The issues have been addressed and no advantage has been given. 

Okay? Apparently not.

The rule of unreason

I think most people with disability will agree that seeking fair access to an opportunity to do their best should not include being given an advantage.

I though this idea was worth sharing, so I wrote to the NSW Premier about it. A week or so later I had a reply from the NSW Public Service Commission nixing the idea. The gist of the letter was that if everyone got interview questions 3 days in advance that would be a problem. But if candidates with disability did, that would be an ‘adjustment’. There are several problems with this.

The first is that an ‘adjustment’ is necessary only when a situation or practice is not inclusive. It’s a ‘fix’ while the non-inclusive matter is made inclusive. The goal is inclusivity, not the provision of work arounds. So often an adjustment turns out to have universal benefits. A ramp put in for a wheelchair user benefits anybody unable to use stairs.

If we see the interview question pressure test as stairs, we can see the getting the questions 3 days in advance is like a ramp. You can still cram your interview prep into 20 minutes if you wish. Not everyone can, but all can get to the same destination.

The reality is that many people who would not identify as having a disability are equally disadvantaged by the pressure test situation. This includes those who wish not to say they have a disability, those who experience anxiety reactions to interviews but think that’s just normal, and people experiencing stress for a variety of reasons [work related or personal causes].

The objection to this idea seems to hinge upon an assumption that the interview prep pressure test is a good thing. In fact, it confers no benefit at all and skews interview outcomes toward people who do well under such a pressure scenario – and these [as we all know] are not always the best fit for the role.

This objection is routinely raised by people who oppose making practices and environments more inclusive. This thinking includes assuming that being obliged to ask for an adjustment is an adequate response to a non-inclusive situation. 

Conclusion

There’s a lot of work to be done to make recruitment processes fair. The fact that a candidate can ask for an adjustment is a genuine advance. But it draws attention to disability, which can trigger biases and misconceptions. This is certainly the case with psycho-social disabilities which have no impact of job performance.

An inclusive practice is one which accommodates the needs and capacities of most people [I am allowing that none will be perfect]. The development of inclusive practices can and should trigger a rethink of previous business as usual practices. Resistance to changing how we think and act is normal, but it’s not defensible as a sustained response – it’s just hard to do.

I invite you to grasp two take-aways:

1. Know that you can ask to have interview questions in advance to address any aspects of your disability that impede your ability to perform in an interview prep pressure test.
2. Campaign to make it the standard practice for all candidates – so everyone benefits. This is the ‘solve for one, extend to many’ principle of inclusive design. 

There are other challenges to address before recruitment practices are as inclusive ss they can be. Specialist recruiters would be my ideal. But in the public sector that’s unlikely to ever be a reality. Hence, we need to look at one challenge at a time. The 3-day prep challenge is achievable and will make a critical part of the recruitment process inclusive for all.

Introduction

I have been fascinated by the problem of exclusive [non-inclusive] conduct by many folks who would seem to be otherwise inclusive. It has different dimensions and degrees of manifestation – from inaction to obstructing to active acts of exclusion.

Here I want to offer a few thoughts on my effort to make sense of this.

Our instinct for inclusion

Deep in our primate nature is a profound instinct for belonging. Upon it our psychological wellbeing depends. We crave connection, acceptance and having a sense of belonging. Many of our deep psychological troubles arise from that instinct to belong being denied its natural and full expression – or is betrayed. When ‘one of us’ denies us, or injures us, we are harmed at an existential level.

When we belong, are embraced, and included, we are happiest. This instinct is the foundation of our impulse to be inclusive and nurturing.

Our instinct for exclusion

Our impulse to nurture must include a protective impulse to exclude those who might be a danger to ‘one of us’. This is an essential instinct – to keep threat at bay and ensure the safety of our core community – and our individual sense of self.

But what we define as a threat can be based on beliefs, memories, traditions, habits, and cultural conditioning. We can also find the roots of aversion to disability in religious and historic traditions where the celebration of the unblemished was a fundamental ideal of perfection that applied not only to representatives of the divine but to those offered in sacrifice. On a human instinctual level, the unblemished and unimpaired were favoured in the mating contest, and the contest for status in a community. 

We can and will exclude for deep, mostly unconscious, reasons that resolve some sense of threat we feel. This is why we have ‘anti-discrimination’ laws. But the problem isn’t that we discriminate [it just means making distinctions – and choices based upon those distinctions]. 

In our haste for snappy shorthand terms, we have left off ‘inappropriate and unjust’ to describe the forms of discrimination we abhor.

So, we can see that someone that triggers our protective impulse to exclude may be activating a response that is now neither fair nor appropriate – and which may actually contradict our intent to include.

The novelty of complex pluralistic communities

Not since the Roman empire have we lived in communities so rich in cultural diversity that have taxed our ability to widen the embrace of our sense of ‘one of us’ and question our sense of who is or is not a threat.

Essentially allied to this influx of people from diverse communities we have also opened up to members of our own community whose attributes have previously excluded them from our embrace as ‘one of us’.

Our communities are now experimental settings for the wider evolution of instinct to nurture – to expand the embrace of ‘one of us’. But to make this work to its highest potential we need to bring our protective and exclusionary instinct into conscious awareness to ensure they appropriately activated – in line with contemporary values.

In a sense what we call ‘discrimination’, exclusion, is triggered by the application criteria for exclusion that are not considered consistent with the values necessary for a successful complex and pluralistic community.

The choices we make

The evolution of our contemporary culture isn’t a simple or easy business. It takes deliberate effort – because we all have exclusionary biases. Depending on our personal histories, responding to those biases, and reducing their impact can be more difficult than for others – but nobody has it easy.

Advocates for inclusion, seeking to activate nurturing impulses, can make it harder by introducing blame for inaction or perceived slowness of response. That attitude can trigger a protective response and make exclusion seem justified. No body wants to be blamed for responding to unconscious impulses.

We are all free to agree or disagree with the proposition that the evolution of an inclusive complex and pluralistic community is a good thing. There are many who do not – for reasons they feel are entirely valid. However, when it comes to being a member of an organisation’s workforce there cannot be a justified conflict between the organisation’s values and the values of members of its workforce. There must be alignment to ensure integrity and accountability.

Conclusion

I think that by understanding that we are all driven by essential nurturing and protective instincts is important. Finding the right balance between the two is essential for our sense of wellbeing – psychologically and morally.

But it is equally important that we know we are also free to choose whether we agree with the values that are needed to evolve a functioning complex and pluralistic culture – whether that’s our community at large or the organisation we work for. Inclusion’s not for everyone. Those who disagree are free to do so, so long as they do not act deceptively and misrepresent their non-conformity in a culture that champions and celebrates inclusion.

There will be those who support inclusion but struggle to match their reality with the ideal. That’s most of us [me included]. We share the aspiration and struggle to grow into the ideals we agree are worth our effort. We must be kind to our allies, and not mistake them for opponents. And we must be kind to our opponents too – so there is a better chance they can become allies.

Introduction

I have touched on the idea of idealism several times. The ideal of the beautiful and the unblemished can be found in the Christian Bible and in Greek culture. I have no doubt that when it comes to the gods, their representatives and sacrifices are universally expected to be ideal.

But we are dealing with human reality which cannot be distorted by classical allusions to perfection. We are not dealing with sacrifices either – at least not intentionally.

There is sound evidence that physically beautiful people are treated much more favourably than those modestly endowed with physical appeal. But if we examine our primate nature more carefully there are other more powerful signals of success. In males that includes aggressiveness and the ability to build alliances, for example.

Ideal humans are rare. You don’t often find handsome, intelligently aggressive men who are great at building alliances. They are mercifully scarce. [I say that because an overabundance of them would make our reality a constant battleground] There are a lot of almost who strive to fill the bill to varying degrees of success. The rest of us merely dream of being that good – or so we are induced to think.

A minority of any community meets the criteria to be assessed as members of the ideal elite – the beautiful people – the god-like. And yet we have the template of the ideal tattooed upon our psyches as if it had real meaning for us. It doesn’t. We are mostly blemished in some way

Despite this we think in ideals – and in averages – as if the ‘average’ person is an ideal of all people in a physical sense. It is guesswork. In a tribal setting without fixed infrastructure, it may have been possible to accommodate individual needs. In a massed population with a built environment with costly infrastructure that has to cater to everybody the easy thing is to go for averages. But averages, like ideals, don’t exist in the real world.

The seating problem

These days I care about seating because I need to use it way more than I have done in the past. I care about where it is, what it is made of, and how high it is.

Here’s a quick scenario. I am walking in a park because that’s where there is an accessible pathway. There are bench seats nicely spaced. They have nice timber slats that stay wet after rain, and they are low. I need a break, so I sit. In the summer the seats are dry but are in full sun.

Did I mention they are low? I am tall. Getting out of a low seat can be a bit of a problem for tall people with mobility disabilities.

I live in Katoomba. Down the whole length of the main shopping strip, I don’t think there’s a single bench seat that’s under cover. Clearly the seats have been placed there for a purpose – an identified need. But that need is considered active only when the weather is dry. You can sit on the seat in the rain and maybe avoid getting a wet bum if you have the right kit.

But here’s the point. Installing a seat is half the solution to the problem of where to sit if you need a break. The other half of the problem is ensuring the seat is usable all the time.

I think the problem comes down to a sense of idealism – ideally you don’t need a public seat to sit on, so those who do are a bit of a pest – so we’ll stick a seat here and there because we have to. People who are not ideal are reluctantly catered to. We have to spend extra money pandering to their lack of ideal attributes, and that means less money for making ‘normal’ people even more comfortable.

You may think I am being unkind. But I am not attributing conscious intent to any action – rather an unconscious one. I am not suggesting intentional unkindness – rather that an unconscious limit has been imposed upon natural kindness. What worker installing a seat that was exposed to sun and rain would do so knowing that their mother would be a user – unless their natural care was dulled? What dulled that sense?

In the past I have looked at bigger accessibility issues – things not done because of larger limitations. But things done to facilitate access done in an imperfect way have eluded my attention. It has only been since I became member of my local government access advisory committee that I have become aware of how much thought must be put into seating in public spaces to make those spaces accessible.

A bench style seat could be an aid to access, or it could be place where the unimpaired take their ease to enjoy where they are – and this they will not do under the hot sun or in rain without protection. And because advanced age itself is not a disability, just a consequence of the passage of time, a seat in a park, or on a street is more a reward than an aid to seniors.

When we imagine seats as aids to access, we are adding a new dimension of thought to design, material, and placement. At a basic level a seat is something to sit upon. It can be a nice to have or a must have. Nice to haves are for enjoyment. They can enhance the experience of being somewhere. A seat as a must have is something that makes being in a place possible. It becomes a necessary and accessible resting place. By accessible I mean you can get onto it and off it independently.

A must have seat is needed periodically for resting and stabilising so as to enjoy being in the place one is in. A perfect example of this is at Wentworth Falls lake where a concrete pathway has been extended to a small jetty at the western point of the lake. A seat has been installed about halfway along the path, and another seat on the jetty. I can just use the seats in terms of height for getting up. But, as attractive as the seats are – chunky timber – they give me a wet bum when I go walking after rain.

I love the fact that the path and the seats have been installed. I have added a trip to the jetty to my morning walks when I crave being by water. I pack a small towel into my shoulder bag because, on wet mornings, I am still a little self-conscious about walking around with a large damp patch on my backside. What might some folk think?

Wentworth Falls lake is a fine example of an accessible pathway in an attractive setting with nicely spaced seats, and work is being done to make it even better. Even so, there is inadequate attention to weather – as it is assumed that the only time people with disability go walking in when the weather is suitable. The idea of folk with disability walking for exercise, even when the weather is not ideal, hasn’t struck a chord. The tyranny of idealism dominates.

Conclusion

A few years ago, I was in Mudgee on my way to Dubbo. I parked opposite a taxi rank to get some breakfast at a café just around the corner. The café is now closed, sadly. I was struck by the presence of an eminently sensible idea. The taxi rank had a roof. The drivers could sit in their cars on a stinking hot day and no longer suffer as much. The roof was new. But hot days and taxis were not. It took a long time to care about the drivers, but it finally happened.

I used to rely on taxis to get from home to the station on a regular basis. I remember that even hot days in Katoomba were tough if you had to sit in a car in the sun for any length of time. I told the drivers about what I had seen in Mudgee. The reaction was uniform – what a great idea, but it would never happen here. It hasn’t – yet.

I don’t know what year the roof went up over the taxi rank in Mudgee. It wasn’t there in the early 1990s when I started to be a regular visitor, and I don’t recall it prior to 2008. But I do know that back then there very hot days and taxis.

I am not trying to equate sitting in a taxi with sitting on a park bench. I want to draw your attention to the fact that finally somebody figured that dehydrated taxi drivers serve no good purpose. The light of kindness penetrated the fog of…what? Taxi drivers are too low on the ladder of respect to care about? They are god-like in their thermal endurance skills and we don’t need to care?

Some of us are old enough to remember when car seats didn’t slide back or forward. There was one position, and the seat [a bench seat], was firmly bolted to the floor [ah, a twinge of nostalgia ripples through me].

We don’t have them anymore because we stopped thinking in averages. These days you can pimp your ride in myriad ways. 

Universal design is a thing that’s not well understood. It’s also called Inclusive design. It’s different from ideal or average design in that the intent is to design for everybody. Can you make a park bench that suits tall and short people in all weather? I don’t know the answer, but I do know that’s the question to be asked once the spell of idealism and averagism [it’s a word now] is broken.

Seating matters to me. It seemed like a simple matter until I got interested. I used to put up with discomfort and inconvenience because I was just so darned grateful to be able to sit down at times. But when I was obliged to think about it from other people’s perspectives it became emblematic of a way of thinking that we are working to change.

Things begin to change when we start asking the right questions. Getting to the point of being able to ask the right questions is an adventure and a challenge. Up for it?

Introduction

I mentioned briefly in my last post the hassles of travelling with a disability. The specifics vary at an individual level and can range from huge [like a step a wheelchair can’t get over to relatively minor [like a coffee cup with a handle you can’t grip].

My purpose here is to give a perspective on the genuinely good effort to make our notionally shared environment genuinely accessible – and why accessibility doesn’t stop at the obvious.

The coffee cup or mug

I have 2 options these days. I can carry my own drinking vessel or ask for a takeaway cup at a café. I confess to electing the latter because carrying my own cup isn’t always a doable thing [okay, that’s not really true – it’s just another hassle I resist succumbing to].

Here’s the problem and do please check this out. It takes a certain grip strength in your fingers to hold a cup/mug by its handle. If you have that strength that’s fine. If you don’t the only option is to pick up your tea or coffee using the body of the cup/mug. If you like your drink cool this is fine. If you don’t, you will burn your fingers – or use a straw.

Ceramic drinking vessels are cheap and generally robust, but they are awful if you have an impaired grip. They bleed heat, and their handles are rarely designed with kindness. When an environmentally unfriendly paper takeaway cup is vastly superior something isn’t right.

Ramps are not always the answer

Getting into my chiropractor’s practice rooms obliges me to encounter a triplicity of impediments, the worst is the ramp. It is short and a bit steep. Then there’s a screen door and a round handle. What is it with round handles? The lever is perfectly fine and suits everybody.

The ramp replaces a step in the misguided belief that’s a superior alternative to a few shallow steps. It is a minor irritation to those for whom it makes no difference. But it is a serious pain for those it was meant to benefit. Because it is short it’s still a case of having to step up, but now over a greater distance, and starting with your foot angled up – which is an issue if your ankles don’t work. The door is too narrow to get a wheelchair in, so it wasn’t designed to assist wheeled access.

It was a well-meaning attempt to solve a problem without thinking it through properly. It makes access harder and less safe for some.

At Govetts Leap lookout the recent improvements have thankfully included sealing a spill over-carpark, but then there had to be a step up to a walking area via a gutter. But rather than a sharply defined gutter there is an elegantly curved one that has a kind of ramp effect. I am not sure whether the gutter design is aesthetic or intended to be helpful. You could maybe get a wheelchair up and over it.

But for people like me, and older persons and people with sight impairment it is more a potential hazard than a help. Now it’s a longer step up over an ill-defined area, and there’s no support to steady balance with.

There are well-defined benefits to be obtained from having ramps. But that doesn’t mean that the ramp is a universal solution and that all steps are evil. I received a firm education about this after extolling the joys ramps in the company of an access consultant who promptly and firmly reminded me that folk with balance disabilities would not agree. And, as I have discovered, balance isn’t an issue just because your sense of balance is impaired but also because impaired mobility can make balancing perilous.

Grips and rails that do nothing

In Rylstone NSW, there’s an ‘accessible’ toilet in which the pan was installed half a metre away from handrail intended to be used to help a user rise after use. Several workers executed this job without once wondering whether the placement measurements made any sense. I did send a polite message to the region’s council, but I haven’t been back to see if it has been sorted.

In Canberra a motel’s ‘accessible’ room has a sign above a towel rail warning users it is not a handrail. The handrail, which is beside the toilet, is too ‘beside’ to be of any use, so users reach for the towel rail. I did politely point this out to the motel operators, but a year later the sign was still there. The clue the handrail may not have been well-positioned wasn’t obvious enough.

Placement of handrails, and their sizes and shapes, should be a science. It is in the sense that there are standards. But it seems also to be an art practiced by folk of good intent, but with no aptitude for research or focused critical reflection. Here’s a brief sampling of various motel efforts in NSW.

• A single small hand grip that is variously placed too low, too high, too close or too distant to be of benefit to other than the one random person for whom it is optimally placed. I have never been that person.
• A handgrip placed over a bathroom cabinet which was so close to the toilet there was hardly any room to get knees into the tiny space left. The handrail was unusable. Mercifully the handbasin was close enough to serve as a grip.
• A shower that had a small supporting handrail in it, but there also a significant hob with no support to get over it. Hence those able to get into the shower would have little use for the support
• A shower that appeared accessible and had a decent sized support rail immediately under the shower head. But how to get to and from it? Who is going to test whether the tiles are slippery?

I am not sure how folk who run these establishments envision their efforts – other than with no clarity. There is certainly no belief that people with a disability might travel alone or that they might desire to toilet or shower themselves independently.

Older folk travel too, and they don’t see themselves as people with disability – just with the downsides of getting older. Motel and hotel bathrooms can be danger zones for a lot of folks. And yet there are no standards to be met before a room can be called ‘accessible’ – or ‘elder safe’ [that’s an idea that just struck me – I don’t know if it’s a thing – but maybe it should be].

It isn’t just about mobility

Mobility access is important, but that not the defining feature of being able to travel with some degree of comfort. There are many other aspects of disability which have little adverse impact of mobility in terms of getting around, but which can be adversely impacted by how hotel and motel rooms are designed.

For example, was I was staying in a decent hotel in Sydney because it tended to be kinder than many in its room layout – but still pretty bad, even though it advertised accessible rooms. Here are a few things that were major flaws:

• The return on the door was so strong I needed to lean hard on it to open. I asked for it to be adjusted. It wasn’t. 
• The room had several lighting sources, including a standing lamp with a floor switch behind a sofa. I had to ask staff to come and switch it off.
• Even though the room was notionally suitable for a wheelchair user the tea/coffee making station was at hip height and far from the table.
• The two-seater sofa was very low and with very soft cushions. I couldn’t use it. The only other place to sit was at the table from which I couldn’t see the television.
• The television was on the wall directly in line with the bed. I cannot sit in bed leaning back on pillows. I listened to, rather than watched, the telly.

The rooms toilet was fully accessible, and the shower marginally so – usable but dangerous. The rest of the room couldn’t have been better set up to make staying there unpleasant and uncomfortable. There was no concession to disability accessible anywhere outside the bathroom. And even so I had to ask for a chair so I could shave and clean my teeth. 

The room was set up based on an incoherent vision of a person with disability – just a jumble of diagnostic features and not a whole person. These diagnostic features related to design standards – but we are not design problems defined by a cluster of ‘symptoms’.

Let’s not mess about here. Being able to wash and toilet is absolutely essential. But its not all we think about, and it’s not how we define ourselves. We want comfort and enjoyment as well as being able to meet essential needs.

Conclusion

This is a brief personal reflection on small array of the things that can make going anywhere a pain in the butt. By that I mean experiences that corrode the pleasure we might derive from short or long trips. Its not meant to be about enduring discomforts, inconveniences, and perils, but it can become like that.

I get that being able to have one’s essential needs is important, so I am not griping about welcome accessibility features at locations and venues. That’s just not where our expectation of equal rights and dignities ends. These accommodations are not the whole edifice of our equality – they are just the foundations.

The ceramic coffee cup is emblematic. Who is it designed for? An unimpaired ideal. I didn’t like these designs before GBS – barely functional handles that my large hands struggled to make usable. Who is the hotel room designed for? An incoherent assemblage of attributes – a mythic ideal person with disability?

We create ideals that are incoherent. We know the ‘average person’ does not exist but when we make lots of things in anticipation of use by lots of people, we have to guess what is good to make. Obviously personalised design to meet every person’s needs is not practical at the moment. Maybe in a few centuries we will have figured out how to do that.

What we must do is reinvent the template of the ideal human to be ‘ideal’ in the sense of being able to embrace the spectrum of being human, rather than a vision of unimpaired and unblemished perfection. We are not Greek gods and goddesses. We are those whom they treat capriciously.

Then we can imagine that a person with disability is a broad spectrum and coherent representation of the reality of living with disability – and not a disembodied assemblage needs defined by standards and compliance demands.

Introduction

I have been distracted from writing on disability this past month or so. But I have been immersed in disability from several angles. My twin sister is having a hard time getting her daughter on to the NDIS. The pressure of life circumstances and dealing with a bureaucracy can overwhelm. A friend told me about how disability severely impedes his ability to travel any distance. We commiserated about the way travel, which used to be fun, has become a judgement game about accessibility and the limits of tolerance.

On the home front I have been chatting with National Park & Wildlife Service staff about upgrades to Blue Mountains venues which are now more accessible than before. But still there was lost opportunity for a more natural inclusion. In this case design challenges were dictated by engineering imperatives and then regulations about safety.

I have been distracted by a long-term inquiry into the nature of belief in which I conclude that we can hold our beliefs tightly or softly. We can be fixed and attach our sense of identity to what we believe. Or we can locate our sense of identity someplace other than what we believe. 

This unexpectedly came to matter a great deal when I came to look at belief through the filter of living with disability.

Love and struggle

One of my sister’s daughters has a disability, as does her daughter, and they are all sharing a small flat because finding a place to live has become incredibly hard. And when you need help to make a go of your life the degree of difficulty grows when finding a place to live borders on the impossible. 

Ideally my niece and her [now adult] daughter would be living as they were in Melbourne – in their own place with support. Then they moved to be closer to my sister in southeast Queensland for the care and love that brought. But now they are living with her and her husband in a tiny place not intended for 4 people.

Nobody is happy. Nobody wants the situation to be as it is. But changing it seems like a monstrous challenge that is beyond them for the moment. My sister is retired and wisely downsized to make their cost of living manageable. Now there are 4 people in a 2-bedroom flat. My niece and her daughter share a room out of necessity, and neither like doing so. Both have intellectual disabilities so the nuances of adjusting to fortunate adversity are not available. I say fortunate adversity because if you are going to be ‘homeless’ living with your mum who loves you is fortunate.

Like so many parts of the country the passion for Air B n’B style accommodation has collapsed the rental market, and driven rents up. This pushes the demand for public housing up, and it is already under pressure. The unfortunate reality here is that my sister lives in a ‘holiday destination’ where housing pressure for folk like her daughter is already intense.

One of my favourite jokes is: Q: “How do you make God laugh?” A: “Tell Him your plans.” Its not a joke I share within earshot of my sister these days. I am okay making it. I wasn’t planning to end up with mobility and grip disabilities. I can still hear divine laughter echoing down the last 15 years.

What was what seemed like a good plan – to move closer to mum and other family members – has turned into a bit of a disaster. The NDIS business will get sorted out. Good people are on to it. The housing situation is another matter without ‘divine’ intervention.

Back breaking travel and the safety of home

My friend has a spinal condition that makes travel of any kind a risk and a source of pain. He elects to drive so he can take along equipment that can ease pain and discomfort travel causes. A 3-hour driving trip will necessitate 4 breaks and recovery time on arrival. So, it becomes more like 5 hours.

He has the immense good fortune to be able to work from home where he has therapeutic equipment that he can use during the day to ease spinal discomfort. Without it his ability to deliver high quality work would be limited. He is deeply grateful for the opportunity to work from home, and for the NDIS which made it possible to acquire the therapeutic equipment he needs to ensure he can get through a day.

Travel of any distance has become a calculated risk and undertaken only when circumstances warrant it.  He can’t use public transport, so he must drive. This was also true of a mutual friend with MS. In both cases a trip to an event in Sydney would mean travelling the day before, staying overnight, attending the event, staying overnight, and returning the next day. 

I could drive the same distances, attend the event, and return in the same day, admittedly with long hours. At least I could have once. These days the cognitive and muscle demands of driving with impaired ankle function have ruled out driving into Sydney. Its seriously stressful. I can drive okay, but the cognitive demand in city traffic steals any residual pleasure that is left. I so much prefer country driving. 

Being able to drive is a blessing, but with disability there are also limits and considerations of safety and wellbeing to be factored in. 

What is the challenge?

Govetts Leap Lookout in Blackheath is no longer the inaccessible place it was. Access has been markedly improved. Wheelchair users can now move with comfort and ease. I am grateful for the changes too. But its not perfect. Why that’s the case is interesting.

It does take a practiced eye to see subtle truths. The site had an access consultant who observed important concerns. But they are not omniscient. We don’t understand that having a disability doesn’t make you expert on all the rest. I have met access consultants with and without disability and they are pretty good. But they miss things.

Govetts Leap is a case in point. I get around on Canadian crutches. I can’t take photographs without leaning or sitting. At Govetts Leap there was a brand-new lovely stone wall ideal for sitting on, but behind it there’s a significant drop onto a ramp providing access to the toilets. 

The solution was to instal a handrail in front of the wall to prevent sitting on it [and hence falling backwards off it] rather than placing a barrier behind to prevent falling backwards. The solution solved the safety problem at the cost of utility.

There are seats on the viewing platform around 3 metres from the railing, meaning that on a busy day, if you needed to sit, you’d have no shot at seeing the view without constant interruption.

It wasn’t that there wasn’t sensitivity to the needs of people with disability. It was that they were seen as a problem to be addressed and not a requirement to be designed for as part of the overall experience of being there. Having the seats closer to the view would have created obstructions for standers. Sitters are relegated to a lesser status. 

Standing is the dominant mode. Sitters in wheelchairs can be catered to. They can wheel up to a viewing position no problems.

I learned this at the National Gallery in Canberra. I can book a mobility scooter and park myself in front of a painting – which I do shamelessly. The necessity of being propped upright via crutches is very different. One is neither a competent stander nor a mobile sitter. I need two legs and two arms to stand and move. I am envious of wheelchair users at times. Needing to engage all 4 limbs in the act of getting about is a pain.

There are times when engineering realities and standards compliance demands rule out human centred solutions, but there are also times when the problem is simply that the human priority is not pushed sufficiently forward. But it takes awareness of that possibility – and a passion to make it a priority. That is what we have yet to develop.

What we believe matters

These 3 instances of when disparity between design and intent, and plan and reality can cause major problems comes down to belief about what is possible and necessary. Such belief might be entirely justified but not equal to the reality of what is desired.

My sister planned her retirement intelligently. She moved from a large home to a small flat in the belief that this met her, and her husband’s, needs and means. And then daughter turns up with her daughter and what was a short-term crisis response to a transitional challenge becomes a long-term unhappy scenario for all. 

I can’t say anything critical about my sister. She thought her kids were sorted to the degree that she could select a housing solution that met her needs. When that turned out not to be the case, she brought her daughter and her daughter into a setting that turned out not to be as temporary as envisioned. The consequent psychological stresses were surely predictable. But getting access to the assistance all were entitled to has become a challenge that is eroding everybody’s psychological wellbeing.

The Govetts Leap redevelopment was welcome and inclusive of people with disability. It was a huge improvement on what was there before, and we are grateful. But it became evident that things might have been even better, had inclusion and accessibility been a primary consideration rather than one of compliance and modification of the normal way of designing things. 

There was evident goodwill in the folk who worked on the site, and it would be unjust to criticise them. The problem is a larger one of how designs are conceived and that’s a philosophical question before it is anything else.

I have left my friend with the dodgy back to last because he is a good news story – well mostly. Okay having a degenerative spinal disability isn’t anybody’s idea of good news, but he’s living with it as well as could be expected because of the support he has been able to get.

He can travel but under constraints no reader would enjoy. Travelling has a risk of potentially serious adverse consequences. 

We imagine travel with whatever ease in movement we have. I have been urging him to come to the Blue Mountains and he has been urging me to visit where he is. I am reluctant. He is reluctant. I have my home set up the way it works for me and when I travel, I find the constant stream of small inaccessibilities wearing. The anticipation of pleasure morphs into endurance. It’s the same for him.

My brother, who is a wheelchair user, recently travelled to Tasmania. He flew out of Brisbane where he experienced disrespectful treatment by his airline’s staff that bordered on discriminatory aggression but was greeted with kindness and respect when he landed in Launceston. The trip was carefully planned to ensure he went only to places that accommodated wheelchairs.

That’s an easy ask. In contrast, when the nature of a disability is not plain the notion of accessibility is generously imagined. I have written on the hotel and motel rooms that aren’t as accessible as asserted and believed.

For all 3 of us travel is something we crave, but resist. What was a pleasure has become an ordeal.

Conclusion

Disability has different dimensions at a personal and social level. It influences how we experience life – whether we are the person with lived experience of disability, are carers or families responsible for supporting a person with disability, or members of the community with varying degrees of comprehension and empathy.

My sister may help her daughter find her own home next month, next year, or not for a long time. Nobody had prepared for a long-term sharing of a 2-bedroom flat by 4 people, two of whom have intellectual disabilities and behaviours that require managing – or at least guiding. How would you respond?

In NSW there is a very welcome commitment to making our shared natural landscape more accessible. It’s an evolving perspective that sometimes runs hard up against thinking that is dominated by engineering and compliance focused solutions. Inclusive design isn’t yet a universal approach. Sometimes the user with disability perspective is invited only at the last moment to tweak what is believed to a compliant design. And it no doubt is. But when were the design parameters, standards and principles revisited to update them to meet the perspective of lived experience as we now understand it? That’s a constant process of evolution. 

But it’s an evolution resisted by bureaucratic processes – because that’s how things work. Change is resisted as a natural and responsible response. That’s why we celebrate small victories. Things change via small steps and rarely great strides.

My friend with the spinal condition is a celebration of what can be done. He can work from home. He can have what he needs to make the physical reality of being in an impaired body a tolerable experience. 

He can travel away from his home with care and caution. He has a good life in terms of how he has been able to make living with a significant disability work for him.

I was too old to be eligible for the NDIS when it introduced. Ironically, I worked on its activation in the first district in NSW [and hence the country] just as I became ineligible to apply.

Disability means many things to different people. We are shaped by the idea and the experience. I live with mobility and grip disabilities. My twin sister has a daughter and granddaughter with intellectual disability. I have a brother who is a wheelchair user and whose son is on the autism spectrum – as is one of my niece’s daughters. A nephew has Chronic Fatigue Syndrome.

My family is rich with disability. We have had to confront expression of the human condition in myriad forms, and we have stayed true to being loving and compassionate and inclusive people.

Many of us have limited awareness of disability, but if we looked deeply into the lives of those close to us, we’d find a lot. It just often not a theme of conversations nor a focus of concern. It’s also been artificially separated into social categories.

This is most evident in how the NDIS has been set up. The shut off date of age 65 suggests that older Australians are supported by aged care services, but they are not funded any where near the NDIS levels of support. What has age got to do with access to care and support?

I am not arguing for a universal NDIS level of support, but rather a universal level of awareness of disability, which would remove the need for so many supports by making our culture more attentive and responsive. This awareness isn’t about specific disabilities. It’s about something more subtle.

I was inspired by the Scottish dancer and choreographer, Claire Cunningham. She relies on Canadian crutches for a great deal of her mobility and incorporated them into her performances. See https://www.youtube.com/watch?v=GAoQgmQekxc&t=130s

Claire observed that disability is part of the spectrum of being human, and not always a problem to be fixed. And certainly not responded to solely as an act of compliance with standards or legislation.

I have observed elsewhere that our culture is infected by the sense of the ideal. Even after catastrophic wars in which those who served in our defence and returned with multiple forms of disability, we continued to create a built environment that catered only to the capacities of the uninjured – the unblemished. We made our ‘shared’ spaces exclusionary, and inaccessible to those whose service should have made such exclusion unthinkable. We are beginning to repair that insensitivity now.

We are happy to smooth the way for ‘normal’ people by making their lives more comfortable and convenient as a matter of course. That’s our ideal.

We are discovering that evolving technologies are astonishingly adept at making life more accessible for people with disability. I discovered the iPhone when I was relearning how to make my body work as I recovered as best I could from GBS. Now it’s my indispensable ‘Swiss army knife’ of functionality. I recently upgraded to a 14 Pro. There is potential in our evolving technology to make living with disability as good as it can be – and if we can match that with a kinder built environment that would be better still. 

But that’s not even a fraction of living with disability. The other dimensions of limited, impaired, or constrained experience are not often articulated because it’s a hard topic to bring up without an assurance of trust and safety – and knowing there is a desire to know and to understand.

Studies have shown that many managers elect not to engage on the subject of disability with their staff because they fear inadvertently giving offence. But put this in context. Equally there are studies that show that people in leadership roles become less empathic. In terms of evolutionary psychology there are good reasons why this might have been a desirable trait in some leadership scenarios. But now it just doesn’t work in a contemporary workplace – or in our communities.

Fear of giving offence and a situational loss of empathy blends with feeling a lack of safety to be open to create a gulf of engagement nobody wants, but which few feel comfortable bridging – despite both sides needing and wanting to do so.

Disability can open us to the diversity of human expression or trigger us to avert our eyes. Sometimes our desired choice can be overridden by reflex that takes firm intent to counteract.

A few years back I was working in Penrith. There was a pub just down the road a few doors which was a convenient venue for lunch. The pub was visited by a disability service which brought people in wheelchairs in for lunch. These were people with profound levels of disability whose contortions, noises and appearance unsettled some of my dining companions. That was understandable. Here were extreme and novel expressions of being human. You had to get over the novelty and adjust to the extremes.

We need that adjustment. There is a naïve and idealistic demand that we are instantly compassionate and caring. No, we are not. When our conditioned senses of the ideal and the normal are assailed, we must adjust. We can either widen our capacity to embrace or narrow it. I was okay in that pub because I did my adjustment back in the early 1970s when I bathed, fed, toileted and dressed people like that in a psychiatric hospital’s ward. Seeing them in the pub enjoying lunch was at first a surprise and then a joy. But I must confess getting to joy had to overcome some biases I had allowed to be built up in the intervening years – because these people were not routinely present and not part of my normal.

What does the idea of disability do to you? It is an important question because the very idea of disability is not well comprehended. In one sense it is a person who can’t. In another it is about an environment that won’t. 

We have made disability more about the environment that won’t these days, and we demand it change to the environment that can. This is an essential evolution. But it is an insufficient understanding.

A few years ago, I was invited to assess an e-learning disability awareness course. Each stage was followed by a quiz and if you didn’t get the right answers, you couldn’t progress.

I got to the section that asserted people with disability can do whatever they want [implying we are stopping them] – Yes or No? The ‘correct’ was ‘Yes’. But I hit ‘No”. I can’t garden, do home maintenance, bushwalk, take photos without sitting or leaning – and etc. I failed the course – as DEN Chair.

Disability robs us of potential to do what others do and can render us dependent, limited and sometimes frustrated and even angry. That’s why it’s called disability. Yes, the human made environment has been designed for the unimpaired, and sorting out that discrimination is a huge issue. But its not the only one, or the one that should have the bulk of your attention.

Claire Cunningham has it right in my view. Disability is part of the spectrum of being human – which means we equally share in the dignity of being human. But to share in equality of opportunity and participation we need to surrender the belief that ideal of the unimpaired is naturally and innately privileged – instead of just being fortunate – and even that in a limited fashion.

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.

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.

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