Type
Article
Category
Disability

I am vertical: living with a sitting disability

I am vertical
But I would rather be horizontal

(Sylvia Plath, ‘I am vertical’)

Not long ago, a friend told me excitedly that she had met a woman who, like me, couldn’t sit down because of a medical condition.

‘I’d noticed her standing up at the back of the room during a workshop,’ she told me. ‘I went up to her and asked if the problem was her back. She said, “How did you know?” I told her I have a friend who can’t sit down either. She said she didn’t know there was anyone else like her.’ I stared at her across the table of the Brisbane bar where we were sharing wine and chips. The place had been our regular for the last few years because of its high tables that allowed me to stand while she sat opposite me on a stool.

Did you get her number? I wanted to ask, imagining the conversations I could have with someone else who was struggling to live in a body so ill-suited for this world. Later that night, I Googled ‘unable to sit.’ Unlike the many other searches I’d tried – degenerative disc disease, lower back pain, herniated disc – this one brought me to what I was looking for: the Wikipedia page for Sitting Disability, where I found myself reading a description of my life for the last seven years.

sitting disability is a condition in which a person has difficulties sitting or is unable to do so at all; usually due to pain … People who suffer from this are often totally disabled…there are few jobs in which a person is able to lie down …Sufferers in the United States are unseen because of a lack of suitable mass transit, and the lack of public places to lie down in a socially acceptable manner. Sufferers often remain at home even though they may be totally ambulatory.

There was also a Facebook group called Sitting Disability, where I scrolled through posts about standing desks, the best elevator pitches to explain your condition and the frustration of no one understanding. As I read, I imagined the woman my friend had met going home and doing the same search, finding her community as well.

*                           

My sitting disability started in 2014. I was jogging on the beach when I felt a dull pain in my lower back. It was neither particularly painful nor particularly alarming, but it was uncomfortable enough that I stopped running. The next time I went for a jog, the odd pain started up again. Over the next two weeks, it took over my life. Forty minutes of sitting left me with a brittleness in the lower back – like wood tightening as a screw is driven in – that made it impossible to get comfortable. Sitting for more than an hour, or doing anything energetic, turned the pain into a swordlike impalement through the lumbar that made it difficult to dress myself or pick something up off the floor. I gave up running, cycling, weight training and rock climbing. Then I gave up restaurants, cinemas, theatres and long drives. My boss at the legal centre ordered a sit-stand desk for me, but I didn’t use the sit option.

An MRI revealed that my L5/S1 disk was badly degenerated and torn. An orthopaedic surgeon told me cheerfully than in twenty years or so I would require surgery, ‘but with pain treatment and physio you can lead a normal life.’ He prescribed Tramadol and referred me to a physio, whose exercises massively increased the pain.

Over the next four years, I saw seven surgeons (and countless other medical professionals) and received reams of contradictory and inconclusive advice. Some urged me to have surgery; others warned against. Chiropractic adjustments brought no benefit. Physios and osteos recommended exercises that at best, made no difference. There wasn’t even a consensus about the cause of the pain, with some specialists claiming that the real problem was my tilted pelvis. Many doctors ask their patients to rate their pain on a scale from 0 to 10, a meaningless exercise when pain is entirely dependent on activity.

More than once, I was asked why having to avoid sitting was a problem by a doctor who was sitting comfortably at a desk, looking up at me.

At many of the medical clinics I visited, I was welcomed with the unconscious faux pas, ‘Have a seat.’ I disengaged with the medical system and found work in a non-practising legal role that allowed me to work from home, where I could alternate between standing up and lying down. Over time, I worked out that I could keep my pain level low if I walked a lot, swam a bit, and avoided sitting completely.

In the sitting disability community, the incapacity of the medical profession to assist is a running joke. The Sitting Disability Facebook Group is comprised of people who (temporarily or permanently) cannot sit due to a variety of medical conditions, including spinal injuries such as herniated discs, scoliosis, arachnoiditis and pelvic injury. The group was founded by a Norwegian lawyer, the late Mosken Bergh, who used to get around on a sort of recumbent wheelchair – a bed on wheels, as she could neither sit nor walk – and campaigned for the recognition of sitting disability for fifteen years, until her death from cancer in 2017.

In Norway, sitting disability is known as sittehemning and in 2019, there were approximately 50,000 registered sufferers (out of a population of 5.3 million). Ads screened on Norwegian television, outlining sittehemning and promoting Bergh’s now-defunct website Friends International Support Group. In 2013, the Norwegian Anti-Discrimination Ombudsman ruled that it was discrimination to deny transport for disabled people to a person with sittehemning.

There is no such public awareness in Australia. Most people with sitting disability cannot do paid work, as almost all forms of employment involve either extended periods of sitting or physical exertion such as bending and lifting. Despite this reality, many attempts to obtain the Disability Support Pension (DSP) have been unsuccessful.

On the Facebook group, a US military veteran tells me it took him seven years to win Social Security Disability, Federal Employee Disability and Veterans Disability Insurance for his sitting disability resulting from degenerative disc disease. He recalls:

I had a lawyer that refused to take my case for Social Security appeal. He said that it was difficult for professional people to get disability because we can do our job in a wheelchair. This was after spending a significant amount of time explaining that I couldn’t sit.

A public relations professional in Arizona who suffers from nerve compression in the thighs was refused both social security and private disability cover because there was insufficient information available about her condition, which doesn’t have an official name and cannot be captured through medical imaging.

It is sometimes said that disability is to impairment as gender is to sex. While impairment refers to the medical condition, disability is the social significance of it and the limitations that flow from it. In order to obtain the DSP, a person must be awarded twenty impairment points with reference to fifteen impairment tables that categorise the severity of loss of functioning in different parts of the body. Inability or reduced ability to sit because of pain is very difficult to demonstrate in this way, especially if the cause is something other than a spinal injury. Furthermore, applications must be supported by a doctor’s assessment and in the experience of many people with sitting disability, doctors simply do not understand the extent to which we are disabled by our conditions and by a society that does not accommodate them.

There are many other examples. Public transport is very difficult to use, particularly air travel and long-distance bus services, which require passengers to be seated for some or all of the journey. In a private car, it is possible to lie down on the back seat (though seat belts are ill-designed for this) or in the front passenger seat (though this is dangerous). Interstate travel is particularly challenging. The enforced sitting on planes leaves me in pain for the entire time I am away. The alternative – train travel in a sleeper carriage – is only available on certain routes and at certain times. Earlier this year, my partner and I travelled by car to Sydney. She did the fourteen hours of driving in each direction (bless her) while I lay down on the back seat, a letter from my GP at the ready in case we got stopped by police. In this way, I was able to enjoy a largely pain-free holiday.

In the only academic study of sitting disability that I have been able to find, Pete Lampard and Tanya Bunsell observe:

The world has made a great many concessions for those who cannot walk but it makes none for those who cannot sit.

Indeed, in most people’s minds, ‘disability’ is strongly associated with sitting. The use of the wheelchair symbol to denote disabled people reinforces this. Public spaces are required to be wheelchair-accessible, based on the principles of universal design – the composition of environments so that that they can be accessed and used by everyone – but, even when this requirement is met, very few public spaces are designed with an awareness that not everyone can sit.

Lying down in public places is strongly associated with being drunk, destitute or lazy. Attempts to rest after hours of standing (with the extra pressure on the hips, knees and feet that this entails) are often met with mirth and jibes, even from people who are at pains to accommodate the needs of the disabled when they are aware that that is who they are dealing with. Standing up at an event where others are seated is all too often perceived as eccentricity rather than disability. As a result, participation in social events when you have sitting disability is often not worth the effort, as the adjustments that must be made commonly undermine the experience. Withdrawal from social life is a well-known experience of chronic pain patients. As well as leading to isolation and depression, this can perpetuate lack of awareness about the condition responsible as the patient thus becomes as invisible as the disability they experience.

Through the Sitting Disability Facebook group, I learned that in 2014 the US Court of Appeal handed down a decision that dealt with whether or not the inability to sit for prolonged periods constituted a disability. An employee of Banco Industrial de Venezuela sued for discrimination after the bank refused to accommodate her need to avoid sitting due to pain caused by a back injury. The Americans with Disabilities Act defines a disability as ‘a physical or mental impairment that substantially limits one or more major life activities of such individual.’ The Court of Appeal found that the plaintiff suffered from a disability under the act and dismissed the District Court’s finding that an inability to sit for prolonged periods could not amount to a disability. The Australian legislation defines ‘disability’ more narrowly. The Disability Discrimination Act 1992 (DDA) uses a complex definition which includes the ‘total or partial loss of the person’s bodily or mental functions’. Discrimination against a person with a disability is unlawful where the person is treated less favourably than a non-disabled person in comparable circumstances or where a person does not make reasonable adjustments to accommodate another person’s disability. This applies in proscribed contexts, including work, education, accommodation and the provision of goods, facilities and services. However, it is unclear whether the DDA definition of disability includes the sitting disabled and to my knowledge this has not been tested through litigation.

Now that I have found the online sitting disability community, I am learning to frame my needs in terms of the class of disability that I belong to. There have been some heartening results. Theatre staff, once they have the situation explained to them, are happy to allow an audience member to pay for a standing position rather than a seat. Training providers are often open to allowing a participant to attend by Zoom to avoid the discomfort of a full day of standing even where others are attending in person. Restaurants that have a limited number of high tables will reserve one for someone who needs to stand (and even make an exception to their booking policies in order to do so). I’m also learning that many people in the sitting disability community are worse off than I am and cannot benefit from these sorts of adjustments. In the absence of medical solutions, our lives could be much improved by greater understanding.

Various suggestions have been made for social reforms to address the needs of the sitting disabled. These include: broadening legislative definitions of disability; that all forms of public transport offer passengers the option of standing or lying; that workplaces allow the use of couches and standing desks; that restaurants and cafes provide at least one bar-height table; that medical waiting rooms provide couches or benches and that the wheelchair symbol used to denote disability be replaced with something more inclusive. Reforms such as these would be likely to lead to an increased awareness of sitting disability among the general public, encouraging individuals to become more sensitive to our needs and accommodate them in private spaces as well. A sitting disability is a severe and legitimate physical disability, comparable to a mobility impairment. It is time for anti-discrimination principles to be applied to us, rather than sarcasm, humour or ill-informed advice, so that we may enjoy full participation and inclusion in society.

 

Image: Daniel Berset, ‘Broken Chair’ (Adrian Hu)

Overland is a not-for-profit magazine with a proud history of supporting writers, and publishing ideas and voices often excluded from other places.

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Fernanda Dahlstrom is a Brisbane-based writer, editor and lawyer, who can't sit down. Her work has appeared in The Guardian, Kill Your Darlings, Art Guide, Mascara Literary Review and Feminartsy.

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Comments

  1. I worked in the disability field for fifteen years Fernanda, and I had never heard of sitting disability, until now.
    The general public needs a lot more education in the many types of disabilities and how they manifest.
    Good luck in your future endeavours.

  2. Thank you for such well researched and insghtful article, Fernanda. I’ve experienced this in a much reduced capacity to you and I’m glad you’re lifting awareness about it. And your writing is always a pleasure to read.

  3. Although my daughter has this problem I was not aware how widespread it is I found the article very thought provoking . I live in Launceston Tassy and many buildings are not disability friendly we hope this may soon change

  4. I started with a mild standing disability in the 1970s and in 2005 developed sitting disability after trying to push bubbles out of wallpaper for 90 minutes while standing. For the next 5 days I couldn’t walk or stand but once walking again I realized I couldn’t even sit through a meal at a restaurant and my standing disability was worse. There are virtually no accommodations for reclining at offices and other places where people stand. I was on Mosken Berghs friends board and now a member of the Facebook sitting disability group. Mosken said universal seating, accommodating every position from sitting up to lying flat should be available at all public places. Even out orthopedic doctors offices have only upright seats. Often I lie down wherever I can find room. I lie down on the back seat of a car and because I can sit back in a padded seat for only 10 minutes without straining my back, I can no longer drive in case I would be delayed by something unforeseen. The need to be horizontal isn’t accommodated in society because there are so few people suffering from this out of the entire population. I wish society would be more advanced and accommodate those of us who cannot sit or stand for the time we are expected to. Once again – universal positioning accommodations, which is an upright chair with a backrest that can go flat in same level as seat and additional part to elevate feet, as a recliner would or else a flat bench, preferably with hard surface or firm foam or padding. If at some point I have no one to drive me and private paid transportation doesn’t allow me to lie down, I will have to hire medical transport for most of my transportation as I can walk only for about 30 minutes. Please help us!

  5. I have had a sitting disability since 2016. Like too many of us, my life is incredibly limited. I can’t stand or walk long either, my knees are wrecked Frim years of standing. I’m Confined to the house and unable to do much . There are many days, most days, when I wonder if it’s worth being here .
    I wish the medical profession would help us more. To try and find the root cause of our individual situations. I told a neurologist a few weeks ago that being able to sit is a basic human right. She did not appear to agree. Why not? I’d love to see what would happen if she or any of the countless doctors, specialists and allied health workers I’ve seen experienced what we do, even for a week. I think there’d be far more research if they were forced to “ live” with this terrible, excruciating, debilitating and lonely condition.
    We need more recognition and accommodation for our needs.

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