Orange is the New Black and the realities of living in prison with dementia

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:

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What a champion.

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’.

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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

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Figures courtesy of Justice Health & Forensic Mental Health Network 2012/13 Year in Review

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.

Prisoners are disproportionately exposed to a number of environmental and lifestyle risk factors for dementia. To start, many prisoners experienced socioeconomic disadvantage, homelessness, trauma, head injury, drug and alcohol disorders and mental illness before even reaching prison, and in some cases are poorly educated. Then, the prison environment itself exacerbates age-related illness with limited access to medical care and nutritious food, and high rates of smoking and infectious disease.

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

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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

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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

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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.

Segregation

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.

Mainstreaming

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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.

Why 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.

 

 

 

How Rihanna beat the trolls

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:

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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:

I think I need a cold shower...
I think I need a cold shower…

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!

The real challenge of a 12 Week Challenge

Losing weight is great.

There are so many good things that accompany losing weight, and you’ve heard them all before: reducing your risk of disease, improving fitness, helping your mood, and, most importantly of course, being skinny instantly makes you a total babe.

For me, after struggling with obesity for all of my childhood and adolescence, all I could ever think about was how much better my life would be if I could just lose weight. Like, in my young and closeted head, boys liking you when you’re fat just doesn’t happen.

And so, after struggling to lose about 5kg on my own, I was pretty damn excited when I learned that my gym, Goodlife Health Club, would be running a 12 Week Challenge. Eureka! Weekly group workouts, workshops about nutrition and a chance to work with a personal trainer every week. I’d be SKINNY and HAPPY in no time!

Now don’t get me wrong, I loved my time in the 12 Week Challenge. In fact, I loved it so much that I did it twice – one in late 2012 and one in early 2013. I made some incredible friends, got advice that changed my eating habits for the better and lost about 15kg all up. More importantly, I became fitter than I ever thought possible. I even completed my first half marathon. Fitness wise, I easily had the most drastic transformation of my group, both times I completed the challenge. I went from one of the least fit to one of the fittest.

But I didn’t win.

Luckily, I couldn’t give a crap. I’m the least competitive person you’ll meet (any kind of competition makes me nervous and sweaty and emotional). I thought it necessary to write this piece, though, because future participants need a warning: you probably won’t win either.

The reason is that the 12 Week Challenge creators seemingly attended the Biggest Loser school of health and fitness. They claim to take a range of factors into consideration when choosing a winner: weight loss, fitness, a personal essay, and input from trainers. But it’s just not true. Truth is: it’s all about the photo. To win, you’ve gotta lose a fuck ton of weight and basically look like half of the person you were at the beginning.

Below are the before and after photos of one club winner:

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She looks fucking incredible, right? I take my hat right off to this girl because jesus that must’ve taken a Herculean effort.

I don’t want to take anything away from her or other winners of the Challenge, but focussing on the outward transformation of Challenge participants is harmful. Participants need to know from the start: you probably won’t experience this kind of transformation. Just like The Biggest Loser, crowning winners based on their photo alone gives challengers the misconception that it is realistic to lose a significant amount of weight in a short period of time. It isn’t. It’s not even effective: 95% of people who lose weight quickly put it back on, and then some. It also sets people up for failure. A friend of mine worked her ass off, lost a bunch of weight, and had a psychological transformation like no one else in her group. But, she didn’t look different enough. She was devastated when she didn’t win.

Participants in Michelle Bridges' 12 Week Body Transformation get a pat on the back for big weight loss
Participants in Michelle Bridges’ 12 Week Body Transformation get a pat on the back for big weight loss

The marketing of challenges like this and Michelle Bridges’ 12 Week Body Transformation love to peddle the old story that if you lose lots of weight, you are going to be happy. I bought it hook, line and sinker. And while losing over 30kg in the last three years had made me healthier, it hasn’t necessarily made me any happier.

I learned that exercise is a natural anti-depressant, so I guess my mood has improved. But I think there will always be things that I want to change about my body. I still struggle with depression, and I’ve had my heart broken 3 times since then. My self esteem has improved, but that’s almost certainly had nothing to do with my weight: in the same time period, I finished Uni, got a job, left my crappy boyfriend, came out of the closet and basically got a life. More importantly, I learned the very important lesson that size has absolutely nothing to do with beauty. And I’m certain that my wonderful girlfriend would love me no matter my size.

Celebrating non-appearance related achievements is important for so many reasons. For starters, they take fucking hard work. Additionally, getting stronger, fitter and more active has so many more benefits than just being skinny ever will. It would also help to fight the stupid myth that you need to be thin (but not too thin, jeez) to be beautiful, confident, worthy, loved and happy. You don’t. You are all of these things already, no matter your size.

So despite being a loser, I choose to consider myself a winner. HIGH FIVE!