I have accumulated many, many notches on both the ‘diversity’ and ‘adversity’ scoreboards in my life. When a new hardship rolls around I am experienced at how to cope:
Step 1: Grieve. All seven stages.
Step 2: Find a community of people also afflicted by my hardship, whether online or off.
Step 3: Rebuild my life around this hardship with the support of those found at step 2.
So when I developed a chronic illness and associated disability in the second year of my PhD, one of the most comforting thoughts was ‘Well, maybe I’ll make some new (also disabled and completing a PhD) friends out of this!’
It turns out that this has been harder than expected! First, I scoured my University’s website for resources or services. A disability counselling service is available, and is helpful, but is not specific to higher degree research. The Graduate Research School makes no mention of disability on their website. Prominent PhD support blogs, such as the Thesis Whisperer, PhD Life, and Get a Life PhD, are silent on the topic. I couldn’t find much of a hashtag community on Twitter either. Broader communities do exist, such as #phdchat (for PhD students) and #spooniechat (for people with chronic illness), but very little to combine the two.
I did come across the wonderful PhD(isabled) blog, but this has been dormant for over a year and is hosted in the UK where the disabled PhD experience is very different to Australia (they have a Disabled Student Allowance!) Besides, why should a discussion of the added struggles of disability and/or chronic illness be limited to specialty blogs? Indeed, a very large proportion of people doing a PhD must surely live with chronic illness – just like the general community, right?
There is no denying the double-layered Valley of Shit that the combination of chronic illness and a PhD provides: it is undeniably awful. Whether the illness brings pain, depression, fatigue, anxiety, decreased mobility, endless appointments or some glorious combination of these, it makes an already difficult journey more difficult. It might make it hard to concentrate, to conduct field work, to go to workshops or conferences, to attempt networking, or to do any other essential requirement of a PhD. A myriad of additional support is required, most importantly a supervisor who is able (better yet: trained!) to provide at least some support for unwell students.
I recently tweeted out asking for other disabled PhDs to contact me and was overwhelmed by the response. Obviously we are out there, and probably many people have a better established support network for this than I do. But what if they don’t? What if we’re all just struggling through on a solo journey, with no acknowledgement of the extra-phenomenal nature of our achievements?
Maybe I am alone in this wish, but I would love to see a better network of disabled PhDs. I would love to see some resources about how to manage. And I would love to see PhD support services acknowledging that we exist. I think we deserve that.
I was late to game with Orange is the New Black. While my friends (and the internet) were going nuts about it, I would would put it on my mental ‘to watch’ list and then forget. I rue the time I wasted as it has quickly climbed to the top of my ‘favourite shows’ list. And when I thought I couldn’t love it any more, Jimmy was introduced.
You probably don’t remember her name, but you will definitely remember her story: Jimmy is rumoured to be the oldest inmate as Litchfield, at 100 years old. She’s pretty mild mannered but can hold her own. She responds to fellow inmates talking disrespectfully about her (right in front of her) like this:
The thing that you probably remember about Jimmy is that she has dementia. She is shown wandering and confused, looking for her husband Jack. In Season 2’s “You Also Have a Pizza”, she escapes Litchfield and turns up at Caputo’s gig, mistaking him for her long dead husband. After this, guards are instructed to monitor her constantly. Understandably, this upsets Jimmy but her (correct) concern that “someone is following me” are dismissed as delusional. After briefly escaping their gaze, she ends up mistaking the church altar for a diving board and breaking her arm. In the end, she is granted ‘compassionate release’, with her friends noting that her care needs are too costly for the prison to provide. As she has no one to care for her, she will probably end up on the street.
Although this story line was upsetting, I watched it with delight. As a researcher in the field, it was thrilling to see a very popular program dissect issues of ageism and dementia care in prisons. OITNB has attracted praise for the diversity of its characters (which somewhat reflect the diversity of those in real-life women’s prisons) , and Jimmy is no exception. Portrayed excellently by Patricia Squire, Jimmy suffers the same indignity reported by many people with dementia: in trying to maintain her own agency and identity, she is routinely dismissed as ‘crazy’ and ‘demented’.
Although Jimmy’s story was shocking to many (including the program’s lead character, Piper), it is based in reality: older people represent the fastest growing demographic of prisoners. OITNB’s writers could only cram so much into one episode, and accordingly barely scratched the surface of the realities of living in prison with dementia. Below is a snapshot of what we know.
Prisoners are, in general, at very high risk for dementia
Although Jimmy appeared to be isolated in her struggles, the reality is that she would probably not be the only person at Litchfield with cognitive impairment.
Combined, these factors are associated with a very high risk for cognitive decline and dementia, particularly for Indigenous inmates.
We don’t really know how many prisoners have dementia
Despite this, estimates of the prevalence of dementia in prisons are unreliable. To start, they are typically based on white samples who do not reflect the diversity of the prison population. There is also a very serious problem with under-diagnosis in this population, for two main reasons:
Screening is woefully rudimentary
Screening for cognitive impairment in prisons is poor, sometimes limited to a single question at entry along the lines of “Have you ever had a head injury?” Confusingly, younger inmates are more likely to be screened for mental or cognitive impairment than their older counterparts, and every prison in Australia responds to cognitive complaints differently.
It is also unclear how to screen for dementia in prisoners. Traditional tests are validated in the general community, often on middle-class and educated participants. Prisoners may have a number of confounding conditions that all contribute to memory loss and thinking changes. In that context, it is very difficult to identify impairment specifically caused by neurodegenerative disease.
Older people don’t report concerns with their memory
The regimentation of prison life can mask early symptoms of dementia, and staff are not trained to identify changes in cognition. This leaves the prisoner themselves responsible for recognising and reporting their thinking changes. However, some are reluctant to tell anyone for fear of attracting victimisation. There is also the (somewhat accurate) assumption that reporting would be futile, given that even basic accommodations for disability may be denied.
And what about when, like Jimmy, the person does not have insight into their condition and sees no need for support?
A lack of diagnosis can have serious consequences, including that symptoms like difficulty socialising appropriately, following instructions and performing daily tasks may incite reprimand.
Dementia can cause criminal behaviour
A complicating factor is that some types of dementia, particularly behavioural-variant frontotemporal dementia (bvFTD), affect personality and impulse control, and this can result in criminal behaviour. One study found that 37% of people with bvFTD in their sample had committed a criminal act, compared with 8% of people with Alzheimer’s disease. Crimes committed by people with bvFTD are generally impulsive in nature, including sexual assaults, trespassing, theft and so on.
Given that rehabilitation is not a realistic outcome for these offenders, questions remain about the suitability of their incarceration. Community diversion programs do not exist in Australia for these cases like they do for some mental illness, so where are they to go?
Compassionate release is rare
At the end of Jimmy’s story arc on OITNB, her fellow inmates comment in disgust that prisoners with high care needs like dementia are often released to save the prison system money. This is actually untrue, and contrary to popular belief compassionate release is exceedingly rare.
There are reasons why this can be a good thing: early release can pose a safety risk for the community that person joins, particularly if that person is prone to impulsive crimes like sexual assault (Note: the majority of older people in prison are sentenced for a sexual assault or related offence). Early release also draws criticism from victim’s advocacy groups, and while it is a cost saving measure for the prison system it effectively just moves the public health burden sideways, to another department. In some cases, like Jimmy’s, release is not favoured by the prisoner themselves, particularly if they have been in the prison for a long time. They may not have friends and family to care for them, an understanding how to care for their health problems, or the financial stability to support themselves.
Opposition to compassionate release probably also reflects the ‘penal harm’ model upon which some prison systems are designed: ongoing poor care and the denial of ‘free’ death (where this is desired and realistic) are considered adequate punishment for crime. It is worth noting that such an approach may backfire in the long run, given the very real prospect that prisons could become the single biggest provider of geriatric care in the next 30 years, and that older prisoners are at low risk of reoffending.
We don’t really know how to care for people with dementia in prisons
So if we have decided to keep people with dementia in prison for the duration of their sentence, the system must adapt to cope to their growing numbers. Vast amendments are needed, especially considering that being older in prison is already hard enough without cognitive impairment. In every aspect, the environment has been designed to accommodate younger men, who represent and have always represented the majority of the prison population.
Nobody really knows how best to care for people with dementia in prisons, but two models have been proposed: segregation and mainstreaming.
In segregation models, prisoners with cognitive impairment are moved to a special unit with staff trained to support their needs. Such a system can reduce the risk of victimisation and inappropriate reprimand, and increase social support among the prisoners with associated positive effects on mental health.
However, these units are costly and are not feasible for many prisons. Being moved away from the prison that they know may not be favoured by the prisoner themselves, and can have negative effects on the population they leave behind. Older prisoners can have an authoritative and calming influence on younger inmates, and the prison’s delicate social balance can be disrupted when they are removed.
Another option is to leave prisoners with dementia where they are and train staff and cognitively-healthy inmates to care for them. This approach has shown positive results for both inmates with and without dementia in trials overseas, and is a relatively cheaper option than specialised units. However, care provision may not be tailored enough, particularly for people with complex behavioural and psychological symptoms of dementia.
Ultimately, prisoners with dementia want the freedom to choose where they want to live and where they want to die (just like any other older person). While their right to that choice is disputed, it is essential to their access to adequate care.
Advocates of the ‘penal harm’ model might argue that quality health and functional care for prisoners with dementia is a privilege that was given up during offending. But, in the context of the fundamental right of prisoners to protection from cruel and unusual punishment, the current system of no system just wont do.
Just like in Jimmy’s case at Litchfield, dementia is impossible for the prison system to ignore. The personal, social and financial impact is already severe and is growing. Policy changes are urgent, with interdisciplinary amendments to the system needed to cope with increasing demand. In reality, it is likely that the relative (un)importance of prisoner wellbeing may silence the noise created by issues of dementia, until they are too loud and chaotic to ignore.
This article was originally solicited for and published by Politik @ UNSW Magazine, and is reprinted here with permission.
Dr Margaret Chan, Director-General of the World Health Organisation (WHO), opened the first Ministerial Conference on Global Action against Dementia in March 2015 by describing the projected increase in dementia prevalence as an “oncoming tidal wave”(1). Dr Chan refers to the prediction that the number of worldwide cases, currently at 47.5 million, is expected to double every 20 years for the foreseeable future (2). She succinctly summarised the most worrying feature of this increase by remarking: “About 60% of this disease burden falls on low- and middle-income countries, which have the least capacity to cope”(3).
Dementia is a collective term to describe conditions, most commonly Alzheimer’s disease, that cause progressive deficits to memory, cognition, language and functioning. For the person diagnosed and their family, dementia can be associated with profound loss, grief and burden. Moreover, the financial costs are staggering; from productivity loss to community and residential care, these are projected to top US$1.2 trillion by 2030 (4).
An unequal burden
There are a number of reasons why the expected increase in dementia cases will disproportionately affect low- to middle-income countries (LMICs). The majority of the worldwide population, and two-thirds of people living with dementia, reside in LMICs (5). As socioeconomic development proceeds, these regions move through the ‘health transition’, in which disease burden moves from communicable to non-communicable causes. Accordingly, LMICs are experiencing demographic ageing and an associated rise in dementia incidence at a sharper rate (246%) than high-income countries (131%) (6).
The health transition is particularly relevant in the case of dementia, to which some communicable disease is etiologically related. For example, it is estimated that up to half of those living with the human immunodeficiency virus (HIV) will develop an associated cognitive impairment (7), with the most severe cases occurring when antiretroviral treatment is unavailable or is delayed. Currently, less than 40 per cent of people with HIV in LMICs receive timely treatment (8), potentially adding many millions to current dementia projections.
Adding a third layer of insult is that residents of LMICs experience, and will continue to experience, disproportionate exposure to known environmental and lifestyle risk factors for dementia. This includes poorer access to education and higher rates of prenatal insult and dietary deficiencies. A growth in exposure to cardiovascular risk factors is also predicted with increasing urbanisation (9). Finally, lack of awareness and barriers to diagnosis mean that the current prevalence of dementia in LMICs is probably underestimated (10). As detection and diagnosis improve, so too will the number of people eligible for social and financial aid.
Appropriate dementia diagnosis, treatment and care require sophisticated social and financial infrastructure that even the most developed regions have not yet mastered. To implement such infrastructure with their already limited resources, LMICs will need to take a multidimensional approach with particular focus on the below:
The first step in responding to a problem is to understand its scope and impact. In this race, LMICs have always been far behind; the vast majority of dementia research has long been conducted in high-income countries (11). In 1998, the 10/66 Dementia Research Group was established to rectify this problem, largely funded by bodies in high-income nations or by the WHO. The Group has since significantly improved knowledge of dementia prevalence, diagnosis, risk profiles and impact in LMICs, but gaps are still noticeable. Much remains unknown about the how specific cultures are impacted by and might respond to a
rise in cases. Group leaders argue that responsibility for funding this research must be shared among higher and lower income nations, recognising the collective benefit that would result (12).
Social protections in old age
A crucial element of the dementia response in LMICs will be to address intersections with poverty. It has been established that people with dementia and their families are more likely to experience financial disadvantage than older people without (13). Most LMICs do not provide disability benefits to people with dementia, and pension coverage is not comprehensive (14). Multi-generational co-residence is a norm in many LMICs, and dependents are often expected to shoulder the financial burden of care. Despite reducing state costs in the short term, this model ultimately adds to them: caregivers are forced to leave the workforce prematurely, and development stalls as increasingly educated residents, particularly women, are forced back into the home.
Sustainable poverty reduction schemes are required that consider the implications of dementia on the whole family unit. The implementation of social pensions for the elderly has been suggested to help to break the cycle of chronic, intergenerational poverty (15). In LMICs, pensions can make up more than a third of the household income, improving living conditions for the whole family (16). Moreover, older people are known to invest the money they have into the education and health of their dependents, which ultimately advances a country’s socioeconomic development (17). Most importantly, pensions ease dependency as paid/formal care becomes more affordable.
Workforce capacity building
While freedom from poverty also facilitates better access to health care, a long focus on managing acute medical conditions has left health providers in LMICs with limited understanding of the appropriate management of chronic disease (18). Changes to medical and nursing curricula and a broader role for specialists are required to appropriately meet increasing demand.
Finally, the need for and value of dementia awareness is high; some LMIC cultures remain unfamiliar with the concept of neurocognitive disease, and many perceive dementia as a normal and anticipated part of ageing (19). This creates crucial barriers to diagnosis and receipt of care, and alleviates pressure on policy makers to provide adequate care services.
Knowledge of the early signs of dementia can lead to earlier diagnosis, allow for future planning, and facilitate access to peer support, known to protect against psychological distress (20). Understanding the modifiable risk factors for dementia can encourage preventative health behaviours in early and midlife, ultimately reducing late-life incidence of disease (and associated costs). Community awareness can also affect policy change. For example, the Australian government recognised dementia as a national health priority in 2012 after many years of lobbying from consumer and advocacy groups. Since then, funding for dementia has increased significantly, including a AUS$200 million boost to research announced in the 2014 budget (21).
Efforts to steel LMICs for the oncoming tidal wave are moving forward. Leaders from 80 countries, 80 philanthropic foundations, 45 non-Government organisations and 4 United Nations agencies signed the call for dementia action drafted by the WHO in March 2015. They committed to increasing public awareness, risk reduction campaigns, workforce capacity building and improvements to care, particularly in LMICs (22). It is increasingly apparent that only a coordinated approach between low, middle and high-income regions will allow LMICs to implement the infrastructure they need, but whether in-kind commitment transpires to effective action remains to be seen.
1. Chan, M, ‘Opening remarks at the First WHO Ministerial Conference on Global Action against Dementia’, speech in Geneva, Switzerland, 17 March 2015, <http://www.who.int/dg/speeches/2015/dementia-conference/en/>, para. 3, accessed 4 Apr. 2015.
2. World Health Organization, Dementia: A global health priority (2009), <http://www.who.int/mental_health/neurology/dementia/en/>, accessed 2 Feb. 2014.
3. Chan, op. cit., para. 5.
4. World Health Organization, op. cit.
5. Ferri, C.P. et al., ‘Global prevalence of dementia: a Delphi consensus study’, The Lancet, 366/9503 (2006), 2112-2117.
6. Prince, M. et al., ‘The global prevalence of dementia: A systematic review and metaanalysis’, Alzheimer’s & Dementia, 9/1 (2013), 63-75.
7. Cohen, R.A., Seider, T.R. and Navia, B., ‘HIV effects on age-associated neurocognitive dysfunction: premature cognitive aging or neurodegenerative disease?’, Alzheimer’s Research & Therapy, 7/37 (2015), 37-47.
8. World Health Organization, Global update on the health sector response to HIV (2014) <http://www.who.int/hiv/pub/progressreports/update2014/en/>, accessed 7 Apr. 2015.
9. Norton, S. et al., ‘Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data’, Lancet Neurology, 13/8 (2014), 788-794.
10. Prince, 2013, op. cit.
11. Prince, M. et al., ‘Ageing and dementia in low and middle income countries – Using research to engage with public and policy makers’, International Review of Psychiatry, 20/4 (2008), 332–343.
16. Garcez-Leme, L.E., Deckers-Leme, M. and Espino, D.V., ‘Geriatrics in Brazil: a big country with big opportunities’, Journal of the American Geriatrics Society, 53/11 (2005), 2018–2022.
17. Prince, 2008, op. cit.
18. Beaglehole, R. et al. ‘Improving the prevention and management of chronic disease in low-income and middle-income countries: a priority for primary health care’, The Lancet, 372/9642 (2008), 940–949.
19. Prince, 2008, op. cit.
20. Schulz, R. and Martire, L.M. ‘Family caregiving of persons with dementia: prevalence, health effects, and support strategies’, The American Journal of Geriatric Psychiatry, 12/3 (2004), 240–249.
21. National Health and Medical Research Council, NHMRC unveils plan for $200m dementia boost [media release], 8 Aug. 2014, National Health and Medical Research Council, <https://www.nhmrc.gov.au/media/releases/2014/nhmrc-unveils-plan-200m-dementia-boost>, accessed 6 Apr. 2015.
22. World Health Organization, Governments commit to advancements in dementia research and care [media release], 17 Mar. 2015, World Health Organization, <http://www.who.int/mediacentre/news/releases/2015/action-on-dementia/en/>, accessed 2 Apr. 2015.
Whenever I tell someone that I work with people with dementia, I am invariably met with a hilarious joke along the lines of “How do you remember to go to work? Ho Ho Ho!” or “I guess it wouldn’t matter if you were bad at your job, they wouldn’t remember anyway! Har Har HAR!”
Aside from not being funny, jokes like these make a mockery of a serious illness that has serious consequences. Here are five (of many) reasons why they need to STOP.
1: They’re disrespectful and hurtful
Just like making jokes about any other disability or illness, making a joke about dementia is disrespectful to the people it touches. Dementia can be devastating for the person diagnosed and their family, causing impairment to memory, language, thinking, planning, driving, independence and more. More important than that, a person with dementia is always at their core the same person they always were: maybe fun, opinionated, strong, intelligent, lively, thoughtful, trustworthy, organised, funny, kind, and so on. Just like everyone else, they have skills and wisdom that they can and do share on a daily basis. Making jokes not only makes light of the very real consequences of their disease, but also dehumanises the person behind the illness and downplays the valuable contribution they make to society.
2: They discourage people from seeking help
Unlike cancer, for which the profile has grown so much that one wouldn’t dare joke about it, dementia is a heavily stigmatised disease. People with dementia commonly report feeling embarrassed about their diagnosis and often don’t want friends and family to know. Jokes that paint an inaccurate picture of what it is like to have dementia are partly to blame for this: of course you’d be embarrassed if all you’ve ever heard is that dementia turns you into an incontinent, rambling mess. This discourages people with dementia and their families from accessing care, support networks or activities that can provide them with vital information and a community to make the journey easier.
3: Dementia doesn’t just happen to older people
When you make a joke about ‘senile old Aunt Milly’ or say ‘she’s just old and demented’, you are ignoring a large and growing group of people with dementia that emerged in their 40s, 50s and 60s. Young onset dementia (YOD) accounts for up to 9 per cent of all dementia cases, and can have devastating consequences for the person and their usually young family. People with YOD repeatedly report difficulties and delays with obtaining a diagnosis, and this is in part because of the wrong assumption that dementia is an ‘old persons disease’.
4: Even if it did, older people deserve your respect
At a recent conference I attended, one expert lamented that “so much of the difficulty in preventing, curing or caring for people with dementia comes down to ageism”. This could not be more true. Our society values youth to an extent that ageing is seen as a slow descent into death, with dementia a natural consequence of this ageing (which it is not). The nihilistic approach of “well, she’s going to die anyway” robs people with dementia of their personhood and of the care and support they deserve. Making jokes only perpetuates this ageism and the perception that the wellbeing of older people (and people with dementia) is less important than yours.
I’m nearing the year-and-a-half mark of my PhD, and in most respects am doing pretty well so far. But what I realised at the end of my first year was that I made the near-fatal mistake of the typical type-A: I went too hard, too fast. I spent my first year working way too much, and relaxing way too little. The result was a pretty spectacular burnout and some intense anxiety.
After a holiday, I came back to work and decided that enough was enough; it was time to put my mental and physical health first. I knew I would need a goal to make me commit to spending more time away from the desk. And, go big or go home right? So I decided to train for a marathon.
I’m about three months into training with 6 months to go, and have realised that this big, non-work related goal is having a positive impact on nearly every aspect of my life (the blisters on my feet and my social life are the only exceptions).
In particular, it is making my thesis better. Here are 6 reasons why.
1. It gives me goals that aren’t work related
A PhD can be all-consuming, infecting every waking moment. We all know the feeling of guilt every time we try to do something other than work, telling us that we shouldbe working. Training gives me goals that aren’t work related, which helps me to feel like more than just a student. And I don’t feel guilty when I take the time to train, because I’m still working towards a goal that is very important to me.
2. It makes rejection easier to handle
Academia is all about rejection. Your papers get rejected, your grant applications get rejected, your job and committee applications get rejected, and so on and so on. But when you’ve just reached a big running milestone, the setbacks land a little more softly. It’s hard to feel like a total failure when you’re meeting targets in at least some parts of your life.
3. It gives me time to think
Training for a marathon takes time. A lot of time. I currently run for over 8 hours per week, and other people run many more. That’s a lot of time with just you, the road and your thoughts. Unsurprisingly, I come up with most of my ‘epiphanies’ when I’m on the road, when I can truly work through all my ideas and calmly piece them together. My best insights never appear when I’m staring at my computer.
4. It’s helping me develop psychological endurance
You’ve probably heard the phrase “it’s a marathon, not a sprint” at some time in reference to your PhD. A PhD is a long slog – up to 8 years if you’re doing it part time. It’s a slog that does not give fast rewards. You will reach your goals slowly and have triumphs only every now and then to make it all worthwhile. If fast gratification is what you’re after, this isn’t the field for you. Long distance running teaches you to cope with slow rewards, and that every step forward is a step closer to your goal. It teaches you to keep pushing even if you hit the wall because there is always another wind behind it.
5. It forces me to take non-work time.
I doubt anyone could get through a marathon without a significant amount of time devoted to training (see point 3). A goal that is not related to your PhD forces you to spend time doing things that are not related to your PhD. It also helps you make friends who enjoy things that are not your PhD. Spending time away from your PhD is incredibly important to your mental health, and will actually make your thesis better. Having time dedicated to other tasks helps with focus and motivation when working, meaning that you will be less likely to procrastinate.
6. Running is good for me.
The final point is an obvious one: physical exercise is very good for you. It’s good for your heart, your lungs, your brain. More than that, it can have a remarkably positive impact on your mental health. These things are essential for and more important than PhD success. What is the point of earning a PhD if you have to sacrifice your health to get it?
So get out there!
These points apply to any goal that grows from a hobby. Knit a rug! Write a book! Learn a language! Anything that will get your focus away from your thesis is a good thing.
**Disclaimer: Beyond the temporary impairments I discuss in this article, I am not disabled. I can’t speak for disabled people, and my words on this topic should not be considered more relevant than those of people living with disabilities.**
Dear Virgin Australia,
About three months ago, I had shoulder surgery. I had fallen off my bike about 9 months earlier and dislocated my shoulder. The surgery and subsequent rehabilitation hurt a lot, but more of a burden was the inconvenience and loss of independence that came with having my arm in a sling for 5 weeks.
About four days after my surgery, I flew domestically with Virgin Airlines from Sydney to Adelaide. This was difficult and painful, but necessary so that I could be with my family for my recovery.
This experience revealed to me what people with disabilities have probably been experiencing for years: the needs of people with disabilities are less important to you (and probably many other large corporations) than money.
First, my request (weeks in advance) for a spare seat next to me were flatly denied unless I bought an additional ticket (I’m a student, hells no could I afford that). Now, this didn’t get my too offside because I thought, sure, it’s reasonable that you would want some money for that seat.
I started to get somewhat cranky once I arrived at the airport in my sling and was told that I needed a sick certificate from my doctor in order to be allowed to fly. Again, I get it – you’ve got to be sure I can get out of the plane if we go down.
Under sufferance, I was let on the plane only to be reminded of the inconvenience I was causing no less than 6 times at various points of my journey. Like dude, I’m sorry but I am SO HIGH on pain killers right now oh and also no one ever told me about the rule EVEN THOUGH I BOOKED OVER THE PHONE AND TOLD THE CHICK THAT I WOULD BE IN A SLING.
The thing that really, really riled me, though, was the boarding process. Before general boarding, you made a call for those requiring ‘special assistance or extra time’ and I thought, great! That’s me! But no, apparently that call is for people in wheelchairs only. Seriously? You’re still thinking that the only people with true ‘disabilities’ are wheelchair bound?
What’s more, you made this call no more than 30 seconds before another call, for ‘business class or priority guests’. Literally the only person meeting the criteria for ‘special assistance’ (I.E. IN A WHEELCHAIR) did not have enough time to get through boarding before hoards of business people walked past / pushed through her.
When I finally got onto the plane (after lots of painful bumps and pushing), I realised that half of the plane was empty. When I requested to move to a completely empty row closer to the front of the plane, the flight attendant said that wasn’t permitted as the seats at the front of the plane were for Business class or frequent fliers.
I (thankfully) ended up with an empty seat next to me anyway, either because the person assigned to that seat didn’t show up or no one booked it in the first place. I requested a pillow for my comfort but, sorry, you guys don’t carry pillows on board.
What I realised was that the way for me to get a comfortable and / or pain-free flight would have been to pay lots of money. Then you would care about me! Apparently I was naive to think that a physical impairment might garner some compassion.
I can’t imagine what it must be like to deal with this kind of crap every day. This experience, though nothing like what people with disabilities must encounter, gave me some insight into how your company, and society at large, works.
So I encourage you to think about my experience and how it reflects you. I get that you are just running a business, but people with disabilities are just trying to, you know, live and meaningfully engage in their lives. I’ve learned that people with disabilities are more important than the fact that I’m in a rush, or that I’m impatient. You can learn that people with disabilities are more important than money.
Yesterday, the internet was abuzz with reports that a raft of female celebrities had been “hacked”, their private photos leaked online to the delight of pitiful horny boys everywhere. Jennifer Lawrence rightfully called it a “flagrant violation of privacy”, and actress Mary Elizabeth Winstead took to Twitter to point how damn pathetic it was:
Not only was the hacking in poor taste, it was a crime. A man was sentence to 10 years in prison in 2012 for hacking Scarlett Johanssen and Mila Kunis and posting their photos online. No doubt the person responsible for the latest “leak” will eat his just desserts soon too.
But while this was all going on, I was listening to a radio announcer mention that it looked like photos from more celebrities were to come, including Rihanna. Rihanna is no stranger to having her very private life spilled onto the internet: photos of her bloodied face, beaten by boyfriend Chris Brown, were splashed everywhere in 2012. Provocative private photos were “leaked” some months later.
It occurred to me that somewhere in her career, Rihanna had set herself apart from many of the other female celebrities who were victim to this latest episode of hacking. I realised that, aside from the very real abuse of privacy that occurred, her sexual exposure probably wouldn’t upset Rihanna all that much. Somehow, she has won the war against the trolls.
Exhibit A: she wore this to an awards show a few months ago:
There she is. In all her spectacular glory. Every inch of her on stunning display.
The hacking and leaking of naked photos (just like other forms of sexual violence) is about power. It is about humiliation and shaming of women’s bodies, reminding us that we need to be sexy, but not sexual; if you’re a “whore”, you’re not worth anything. But when a woman like Rihanna owns her sexuality, she shirks the traditional roles and retains her own power. The trolls can’t hurt her – her naked body is nothing the world hasn’t seen before.
The use of shame and humiliation is nothing new to sexual predators, but the internet allows new and very public ways to use women’s own bodies against them. And rape culture is alive and well: we’ve all seen comments on our Facebook and Twitter feeds in the last couple of days, something like “well, if she’s a celebrity, shouldn’t she know better than to take naked photos of herself?” You know what I hear when you say that? “If she didn’t want to get raped, she shouldn’t have drunk so much…”.
Women have the right to be sexual (and, god forbid, NAKED) privately or publicly for that matter, without the fear that it will come back to hurt them.
Sorry trolls, Rihanna is having none of your bullshit!