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.