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Disability Pride Podcast: The Complexities of Identity, Diagnosis, and Disclosure in the Context of Psychiatric Disability
I was recently a guest on Winston Lindqwister's podcast on Disability Studies/Mad Studies for Disability Pride Week at Duke University. We discussed psychiatric disability, the complexities of diagnosis, stigma, identity, community, why my experiences with psychiatric disability have led me to identify with and relate to people with dementia, and so much more! You can listen to the podcast below. Check out the other episodes too, which feature a variety of mad scholars and activists!
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Throughout the world, the prison population is rapidly aging. This issue is particularly prevalent in the United States, which comprises only 5% of the global population but holds 25% of its prisoners (ACLU, 2011). According to Ridgeway (2013), “Roughly 1 in 6 of the 1.5 million state and federal prison inmates is 50 or older, and their numbers are growing at seven times the rate of the total prison population” (p. 13). The increase in older prisoners is largely due to conservative legislation between the 1960s and 1990s, which was designed to be “tough on crime" (Maschi, Kwak, Ko, & Morrissey, 2012; Ridgeway, 2013). The tough on crime movement resulted in policies such as mandatory minimum sentencing, three strikes rules, truth-in-sentencing, and zero tolerance - all of which resulted in lengthier prison sentences with decreased chance of release.
One of the primary implications of the growth in aged prisoners is that many of these inmates are developing age-related impairments, such as dementia. In fact, aging prisoners may be more likely than the non-incarcerated population to develop dementia. As Ben-Moshe (2014a) succinctly states, “Prison is disabling.” In regards to dementia specifically, Belluck (2012) notes, “Prisoners appear more prone to dementia than the general population because they often have more risk factors: limited education, hypertension, diabetes, smoking, depression, substance abuse, even head injuries from fights and other violence” (para 7). Although statistics are not readily available on how many prisoners in the United States have dementia, Kingston, Le Mesurier, Yarston, Wardle, and Heath (2011) found that psychiatric disorders and cognitive impairments are unrecognized and undertreated for older adults in prisons. Furthermore, Maschi et al. (2012) reported that, based on a review of 10 published studies on incarcerated older adults with dementia, 1% to 44% of older prisoners have dementia, depending on the size of the correctional institution. This situation raises many ethical issues. One of the primary concerns is how the U.S. Prison System – and American society – should care for incarcerated people with dementia. Specifically, should people with dementia be cared for in prison? If so, what should this care look like? If not, should they be released and cared for in community contexts? This blogpost attempts to begin to answer these questions, with the hope of starting a dialogue about this important, although often overlooked, ethical and social issue.
My Approach to these Questions
Numerous scholars and social justice groups have highlighted that the U.S. Prison System is a racist, classist, ableist system that disproportionately criminalizes and imprisons people who are low-income, and/or disabled, and/or from marginalized racial communities (Alexander, 2012; Erevelles, 2014; Ware, Ruzsa, & Dias, 2014). Furthermore, the U.S. Prison System operates within a neoliberal, capitalist framework, which influences how we think about and discuss the future of imprisonment. As Ben-Moshe (2014b) writes, "Our current moment is also one of intense neoliberal policies resulting in fiscal constraints, austerity measures and privatization of social services, which simultaneously constrains and holds possibilities for the closure of prisons and large state institutions" (p. 268). I have kept these factors in mind while thinking through how we as a society should respond to incarcerated people with dementia. While I sometimes refer to numbers (economically and demographically), I believe that we need to pay attention to this issue because incarcerated people and people with dementia are ultimately human beings.
The Ethical Principle of Justice
An ethical principle that is particularly relevant when considering incarcerated older adults with dementia is justice. In medical ethics, justice involves treating others fairly, and using fairness to distribute scarce medical resources (McCarthy, 2003). However, other forms of justice are at work in the United States criminal justice system. Although a detailed historical analysis is beyond the scope of this paper, the U.S. Prison System formerly operated using rehabilitative justice, which aims to prepare convicted "criminals" to return to society as working, contributing citizens. However, the “tough on crime” policies of the 1980s and 1990s resulted in the U.S. Prison System relying more on the philosophy of retributive justice. According to Walen (2014), retributive justice follows three principles:
Justice in Medical Care for Incarcerated Older Adults with Dementia
Due to the increased need for health care in old age, incarcerated older adults cost much more than younger prisoners. It costs an average of $68,000 a year to imprison a person over 50 years old, which is approximately twice what it costs to imprison younger people (Ridgeway, 2013). This cost per prisoner results in a total of over $16 billion dollars of taxpayer money annually. Despite this, older adults in prison with impairments like dementia are still unlikely to receive appropriate treatment and services. One of the primary reasons for this is that prisons were not designed with the needs of aging prisoners in mind. As Baldwin and Leete (2012) observe:
Prisons are not generally equipped to deal with infirm or disabled people…existing prison health systems are experiencing difficulties with their ability to [prioritize] beds, which are primarily intended for prisoners with acute medical needs…there is also strain on staff, as corrections officers are generally trained to manage inmate behavior, not to [recognize] and attend to the symptoms of dementia. (p. 16)
Thus, the majority of prisoners with dementia are not receiving the medical services or supports they need due the U.S. Prison System’s incapacity to deal with people with chronic, long-term illnesses and disabilities.
The lack of appropriate treatment and services violates the Eighth Amendment of the U.S. Constitution, as well as the principle of retributive justice, which both state that unusual, cruel, or disproportionately large punishments are inappropriate or immoral. Maschi et al. (2012) state:
The United States Supreme Court has held that deliberate indifference to a prisoner’s serious illness constitutes cruel and unusual punishment in violation of the Eighth Amendment (Estelle v. Gamble, 1976). The Court states in its opinion: “denial of medical care may result in pain and suffering which no one suggests would service any penological purpose.” (p. 445).
Thus, if necessary medical treatment cannot be received in prison, change must occur. Prison systems must evolve in order to meet the needs of prisoners with dementia, or prisoners with dementia must be released in order to receive care in the community.
Providing Care in Prison
Maschi et al. (2012) highlight other models of dementia care in prisons. For example, in the Louisiana State Penitentiary at Angola, there is a hospice program that uses other prisoners as hospice volunteers. This program was covered in the documentary, Serving Life. The trailer for this film is below, or can be accessed here. (Unfortunately, the trailer is not close captioned.)
The “True Grit” program in the Nevada Department of Corrections includes physical activity, therapy, the arts, and other activities and has been shown to decrease the number of doctor visits and medications taken by older inmates. The Unit for the Cognitively Impaired in New York is a 30-bed unit in the prison’s medical center. It is known for having good lighting, windows, access to an outdoor patio, and common social space. Furthermore, a specially trained interdisciplinary staff consisting of psychologists, nurses, doctors, social workers, and pastors treat the patients.
In addition to these unique approaches to dementia care in prison, other changes that may be needed are structural and environmental in nature. This approach aligns with the Social Model of Disability, which promotes changing environmental and attitudinal barriers that disable people with impairments (Asch, 2001). For example, few prisons have wheelchair accessible bathrooms and showers, elevators, or bunk beds. There are also exercise and social activities that are not currently accessible for prisoners with physical or mental impairments. Many medical centers in prisons are designed to be short-term facilities, and so assisted living facilities may be necessary to care for older prisoners with chronic impairments like dementia. Lastly, correctional officers and other prison staff need training to understand the symptoms of dementia as well as how to care for prisoners with dementia. Many prisoners with dementia have difficulty complying with prison rules, procedures, and routines due to memory loss, confusion, and disorientation. Without an understanding of dementia, correctional officers may mistake this behavior for defiance and penalize the person with dementia. According to Baldwin and Leete (2012), “There is a risk of a vicious cycle where lack of training and staff awareness contribute to dementia in inmates not being recognized or treated, and the symptoms of dementia worsening from the methods used to obtain compliance” (p. 17). Therefore, if prisons are provide care for incarcerated people with dementia, structural and environmental changes must occur along with increased training and education for staff on how to best interact with and support people with dementia.
Providing Care in the Community
Conversely, prisoners with dementia may be released in order for them to be cared for in the community. Ben-Moshe (2014b), who is a proponent of prison abolition, discusses community living as an alternative to institutionalization and incarceration. However, many opponents of releasing people from prison (or the broader idea of prison abolition) raise the issue of public safety. Due to the theory of justice through incapacitation, people believe they are safer and less likely to be victims of crime if people convicted of crimes are imprisoned. Thus, many people argue that releasing people who have been convinced of criminal activities into the community will place innocent people at risk. However, as Ridgeway (2013) argues:
Keeping many of these older [people] locked away has little effect on public safety…[Many] older prisoners are in for nonviolent offenses such as drug possession and property crimes. What’s more, crime data shows that people are extremely unlikely to commit serious offenses once they hit 50. (p. 14).
In the case of dementia specifically, it has been suggested that individuals with mild dementia may commit crimes (Fazel, McMillan, & O’Donnell, 2002). However, dementia is a progressive illness, and therefore prisons could also consider releasing someone once they had reached a certain stage of the disease. As Fazel, McMillan, and O’Donnell (2002) note, “There [is] a point at which the level of dementia of…prisoners…renders them incapable of committing further crimes...When this point is reached, the security of…prison is not required to prevent further offending” (p. 157). Thus, these decisions could be made on a case-by-case basis, and if there were concerns about a prisoner with dementia re-offending, this person could continue their sentence until it was deemed more suitable for them to receive care elsewhere. Furthermore, even a person with mild dementia who might possibly re-offend could be released, provided they had the proper care, supervision, and support in the community (Ben-Moshe, 2014b).
Unfortunately, releasing incarcerated people with dementia is challenging for many reasons. Currently, fifteen states and Washington, D.C. have geriatric release programs and others have opportunities for medical release or compassionate release (Ridgeway, 2013). However, these releases are rarely granted. Many prisoners do not know they exist, or do not understand the process for applying. The guidelines differ state to state, and some of the guidelines are subjective and contain conditions such as “whether release would minimize the severity of the offense” (Nuwer, 2014, para 13). Furthermore, they require a significant amount of paperwork and time to process. Often, many inmates who start the application process for geriatric or compassionate release die waiting. Nuwer (2014) notes, “The…problem with compassionate release is…infirm inmates who do or should qualify for release are unjustly kept in prison, rather than being turned over to their families to care for them in their final days” (para 15). Thus, if the U.S. Prison System does decide to release prisoners with dementia so that they can receive care in the community, serious reforms are needed to ensure prisoners with dementia can be released in a timely manner.
Yet another issue related to the release of prisoners with dementia is the type of care they receive in the community. Due to their impairment, prisoners with dementia cannot be released without a plan for their care in place. “Simply pushing them out the prison door will be tantamount to a death sentence” (Ridgeway, 2013, p. 14). In some cases, families may be well equipped to provide care for a person with dementia. However, other prisoners with dementia may be from families that are no longer present in their lives, or may not have the resources to care for them. For example, in the case of one of the prisoners with dementia at the California Men’s Colony who is being cared for by the Gold Coats program, prison officials asked the family if they would like to have the prisoner with dementia paroled. The family declined, with one family member stating, “To be honest, the care he’s receiving in prison, we could not match” (Belluck, 2012, para 55). Although this is an exceptional case given this prison’s innovative program, it still points to the issue that caring for a person with dementia is difficult and costly, and requires human and financial resources.
However, community care or nursing home care is typically still cheaper than caring for a person with dementia in prison and also places the person with dementia in an environment better suited to their needs with access to appropriately trained caregivers. Caring for a person with dementia in prison can cost over $100,000 annually (Ridgeway, 2013), while long-term care services in a nursing home cost on average $78,110 annually (Alzheimer’s Association, 2014). Community supports, such as home health aides, personal care assistants, and adult day care services, are even more affordable and also allow the person with dementia to continue living in a community. Thus, the State may be able to provide better care for the person with dementia and still save money by partially or fully financing community care or nursing home care in certain cases, such as when there is no family involved in the prisoner with dementia’s life, or the family cannot provide care due to economic restraints.
It is important to note that it is rare in Disability Studies to advocate for nursing home placement for people with disabilities. However, I am arguing that, in this specific case, nursing home placement would be better than prison. Community living would still be ideal, but supports for people with dementia to live in community settings would need to be in place.
For instance, my favorite option for community living currently is to expand the concept of dementia villages. Dementia villages are designed to provide care and support for people with dementia in community settings, without placing them in locked wards of institutions like nursing homes. As a result, people with dementia can still experience privacy and autonomy. Furthermore, these villages have facilities (e.g., bars, restaurants, theatre) that can be used by people in neighboring communities, which means that people with dementia in these villages are not segregated from society. Ben-Moshe (2014b) highlights villages in Norway for people with disabilities that are similar to dementia villages as a way to avoid institutionalization/incarceration, and so dementia villages would be a viable (albeit presently expensive) solution.
The “looming problem” of growing numbers of incarcerated people with dementia is challenging and complex (Moll, 2013). Regardless of one’s personal opinion on how to best care for prisoners with dementia, it is clear that the problem cannot be ignored – changes will be required for the U.S. Prison System, as well as other prison systems around the world, to support the increasing needs of this burgeoning subset of the prison population. This paper explored two potential solutions: changing prison systems to meet the needs of prisoners with dementia or releasing prisoners with dementia in order for them to receive care in the community. However, it may be best if a combination of both solutions is instituted given the intricacy of this particular social and ethical issue. It is important for our society to collectively consider how to best address the needs of people who are incarcerated with dementia.
The Virtual Dementia Tour
A recent article highlighted a Virtual Dementia Tour that "offers glimpse of shattered life." The Virtual Dementia Tour (VDT) was established by Second Wind Dreams, a non-profit dedicated to "changing the perception of aging," and VDT has been one of their primary educational tools (and fund-raising platforms) since the early 2000s.
The VDT, described as an "interactive learning experience" asks participants to complete five everyday tasks in 10-20 minutes, such as: folding towels, sorting laundry, setting a table, and brushing your teeth.
While completing these tasks, participants must also:
VDT is advertised as a research-based educational tool that ultimately encourages positive outcomes for carers. According to the Second Wind Dreams website:
Learning to create a positive environment for those with dementia can only come from attempting to walk in their shoes. Created by P.K. Beville, a specialist in geriatrics, this valuable, easy to follow experiential kit is designed to instill hope in professional and family caregivers, providing them with a tool to move from sympathy to empathy and better understand the behaviors and needs of their loved ones and patients.
Belville (2002) studied the VDT with 146 people who worked in the field of elder care and reported that "overwhelmingly, participants in the study came away with a heightened sense awareness of the plight of confused elders and a strong sense that the high behavioral expectations caregivers have for dementia patients are unrealistic and need to change" (p. 183).
Dementia vs. Disability Simulations
Although this simulation focuses on old age and dementia, one could argue that it could be classified as a "disability simulation," as dementia causes numerous impairments, which the VDT is trying to imitate for participants.
Disability simulations are often touted by non-disabled people as spreading awareness and educating others about disability. However, research has demonstrated that, overall, disability simulations are not an effective teaching tool (Flower, Burns, & Bottsford-Miller, 2007). Despite this, simulations continue to be used regularly.
Simulations have been discussed for many years in the disability community and in the interdisciplinary field of Disability Studies, and have been heavily criticized for "sending the wrong message" (Brew-Parrish, 1997). One of the major issues with simulations is their temporal nature. People are asked to "pretend" they have a disability for a very short time period, and, in this brief time frame, it impossible to truly understand the lived experience of a person with a disability. Simulations are often also dramatic and structured as a "game," with an objective and an end. This results in many participants reminding themselves throughout the simulation that "it will all be over soon." Furthermore, many disabled people argue that, following disability simulations, non-disabled people are more likely to:
Disability simulations...fail because they place [participants] in a [one-time] position of disability, before knowledge about disability is acquired, usually resulting in emotions of loss, shock, and pity at how dreadful it is to be disabled. [Participants] experience their body relative to their usual embodiment, and they become so preoccupied with sensations of bodily inadequacy that they cannot perceive the extent to which their "disability" results from social rather than physical causes.
If we apply a Disability Studies lens to the Virtual Dementia Tour, it becomes clear that many of these same issues are reproduced with simulating dementia.
Dementia is a broad category that comprises many symptoms, but the VDT presents a singular experience of dementia. For instance, while it is true that people with dementia often do experience other age-related impairments such as vision loss or arthritis, not all people do as the VDT implies. More importantly, the VDT emphasizes the difficulty, frustration, confusion, and anxiety people with dementia may experience without also demonstrating that people with dementia can also experience joy and happiness. Therefore, although the VDT intends to be positive, I would argue that it actually presents a narrow, predominately negative view of dementia.
Evidence for this can be found in the comments people made following the VDT (Belville, 2002, p. 189), such as:
It is important to note that Belville (2002) did point out some positive outcomes for care providers who went through the VDT. For example, carers noted after that VDT that they viewed behaviors that they previously judged as "inappropriate" as "justified" and "understandable." Some care providers also discussed imposing "unrealistic expectations" on people with dementia because they expected them to complete tasks as non-disabled people would, in an "ordinary" time frame. People also recognized that a caring and comfortable environment would help keep people from dementia from becoming overwhelmed and frustrated.
However, at what cost were these positive outcomes achieved? Pity and empathy do not truly help people with dementia (or any other disabled people, for that matter). As Ladau (2014) argues, pity and empathy do not promote true acceptance or respect. Pity and empathy are also individual outcomes, but we need institutional and societal change. So let's move on from simulations. Let's consider other ways to educate caregivers, and all people, about dementia and moreover, how they might be a part of the change we really need.
The app uses information from your Facebook profile to create a individualized presentation to give people "insight into what hundreds of thousands of people with dementia experience each day." As somber music plays in the background, the app displays your friends, family members, partners, home, school/work, posts, and photos. As the presentation progresses, it reads:
But what if some of these memories start to become confused or lost? You might begin to mix up what you said. Or forget you'd ever said them. You might forget where you live, work, or go to school. Or forget how to do day-to-day things. You might forget things in your past that are important to you. Your husband, wife, partner, friends, or children may become strangers. These are some of the symptoms for the hundreds of thousands of people in the UK living with dementia. Dementia isn't a normal part of ageing. Dementia is caused by diseases. We've beaten diseases in the past. And with your help we can do it again. Research is the answer. Alzheimer's Research UK are the experts.
The app was created by Alzheimer's Research UK, with the primary goal of increasing research funding. Rebecca Wood, the Chief Executive of Alzheimer's Research UK, explains:
Alzheimer's disease and other dementias pose one of the greatest threats to public health now and in the future. Research is the only answer but funding still lags far behind other serious diseases. We hope FaceDementia highlights why it's so important to invest money into research so our scientists can tackle the devastating diseases that cause dementia.
Overall, I find this app and the purpose behind it problematic. I want to be clear - I am not entirely against funding medical research on dementia. While I question if a cure is even possible, I believe it is a complex issue and understand the perspectives of those who wish and hope for a cure. However, I do have an issue with this app furthering negative discourses about dementia while presenting medical research as the only priority.
The app only briefly pays attention to the "hundreds of thousands of people" living with dementia in the UK right now, but, in my opinion, these are the very people about whom we need to be thinking. Research that works to prevent or cure dementia does little to change the stigma, prejudice, and discrimination that people who currently have dementia face daily. It also does not help us improve our current care practices for people with dementia or explore ways to adapt the environment to fit the unique needs of people with dementia.
This app encourages us to face dementia as we would face an opponent. It urges us to donate money to fight dementia. In other words, this app asks us to financially support the medical industrial complex and appeals to our emotions by militarizing the act - we need to "beat" and "end" dementia. Whitehouse (2008) has drawn attention to how highly militarized the discourse on dementia is - the quest for a cure is likened to "waging a war" on a disease that "robs and ravages" the minds of its older "victims". These militarized perspectives result in a focus on the disease and not the person - ultimately contributing to the dehumanization of people with dementia.
Although it may be unintentional, the app actually furthers this dehumanization by not sharing the perspective of a person with dementia. When we "watch what someone affected by dementia has to say," we are hearing the perspective of a caregiver. This is not to say that Susie's perspective as a caregiver is not valid and important - but why do we not also hear from Peggy, or another person with dementia? Their voices, experiences, and thoughts should also be present.
I want us to face dementia by dealing it with it - and perhaps even being radical enough to accept it as a part of the human condition, like many other disabilities. As Kafer (2013) points out, we can create space to recognize, discuss, and even mourn impairments while still advocating for rights and justice. A Disability Studies lens is important in analyzing this app and similar media because it can lead us to reject the belief that people with dementia are simply victims of tragedy by demonstrating how environmental and attitudinal barriers disable people with dementia. This may result in refocusing our efforts. In other words, perhaps in addition to spending time and money on medical research, we can reimagine the ways people with dementia can retain a sense of selfhood and experience satisfaction and happiness in their lives.