To give you some time to navigate away, here’s the publisher’s writeup on Wildthorn:
They strip her naked, of everything—undo her whalebone corset, hook by hook. Locked away in Wildthorn Hall—a madhouse—they take her identity. She is now called Lucy Childs. She has no one; she has nothing. But, she is still seventeen—still Louisa Cosgrove, isn’t she? Who has done this unthinkable deed? Louisa must free herself, in more ways than one, and muster up the courage to be her true self, all the while solving her own twisted mystery and falling into an unconventional love . . . Originally published in the UK, this well-paced, provocative romance pushes on boundaries—both literal and figurative—and, do beware: it will bind you, too.
This book is set in the 19th century, an era when organised ‘asylums’ became quite popular as places for locking people away; in addition to providing a dumping ground for people with mental illness, an ancient practice, they also offered ‘treatment’ to their inmates. Many of these institutions had horrific and appalling conditions and their inmates were just as likely to be unwanted single women of the family or rebellious women who didn’t obey as they were to have genuine mental illnesses. Institutionalisation is a very old plot device and I’ve been encountering it a lot lately; it came up in The Summoning, a book abby jean and I reviewed recently, and Sarah Waters’ Fingersmith featured a storyline very similar to that of Wildthorne (here’s my review of Fingersmith if you’re interested, be aware it has spoilers).
In Wildthorn, the main character is introduced to us in an institutional setting. People are calling her by the wrong name and she insists that she doesn’t belong and there has been some frightful mistake. As she attempts to figure out what has happened, she is moved progressively from the ward for ‘good’ patients to solitary and then to an open ward for the ‘worst’ cases, giving readers a glimpse of conditions in 19th century mental health facilities. She is subjected to brutality in the name of treatment, and is repeatedly ignored and silenced by the medical professionals around her.
As the story winds out, we learn that she was placed in the institution due to a complicated series of family machinations; the short version would be that her aunt sold her out, signing the paperwork to commit her on the orders of her daughter’s fiance, who didn’t want an independent young woman ‘bringing shame on the family.’ Along the way, we also learn that Louisa is lesbian; as she untangles the web of events that led her here, she also finds love, of a form very much forbidden in her era.
The book is an ok read (really, if you’re going to pick one book with this basic storyline, I’d recommend Fingersmith for its deliciously lyrical language), but it sparked some thoughts in me about institutionalisation stories and how they’re used. I feel like a lot of authors feel comfortable putting characters in institutions in earlier historical eras, and I get a whiff of ‘sheesh, at least things aren’t like this any more!’ when, in fact, there’s ample documentation of abuse going on in institutions right now as well as a movement pushing for deinstitutionalisation. It’s also notable to me that in most of these storylines, the institutionalised character is designed to be sympathetic and is humanised by nature of not being mentally ill. Anna pointed out this trend in pop culture last week, talking about television, and it shows up in books too. I’m sure there are books out there featuring actually mentally ill characters in institutions, but the thrust of the story in books like this isn’t that institutionalisation itself is necessarily wrong, but that it’s wrong because someone who didn’t ‘belong’ has been swept up.
Readers of books in this genre who aren’t very familiar with the history of institutionalisation and disability rights would probably come away with the takeaway that institutions used to be really bad, so it’s good that they’ve been reformed; both so that bad things don’t happen to inmates, and so that people can’t be locked up when they aren’t mentally ill. I’d really like to read a book featuring instutitonalisation in a modern setting with an actually mentally ill character (that isn’t a memoir, like Girl, Interrupted) to see how people deal with the theme when they can’t hide behind ‘well, the character doesn’t belong because she doesn’t have a mental illness!’ It would be interesting to see institutionalisation challenged directly by an author willing to ask why people are imprisoned in mental health facilities, period, rather than having it just used as a plot device, a spectre of terror, every ‘normal’ person’s worst nightmare.
©2015 FWD/Forward. All Rights Reserved..]]>
My name is Chloe Saunders and my life will never be the same again.
All I wanted was to make friends, meet boys, and keep on being ordinary. I don’t even know what that means anymore. It all started on the day that I saw my first ghost—and the ghost saw me.
Now there are ghosts everywhere and they won’t leave me alone. To top it all off, I somehow got myself locked up in Lyle House, a “special home” for troubled teens. Yet the home isn’t what it seems. Don’t tell anyone, but I think there might be more to my housemates than meets the eye. The question is, whose side are they on? It’s up to me to figure out the dangerous secrets behind Lyle House . . . before its skeletons come back to haunt me.
s.e. smith: I loved the idea of superpowers being read as mental illness at first.
abby jean: well and i thought the twist of “these mortals pathologize difference” to “these people are are trying to control powers” was interesting.
abby jean: or pathologize supernatural difference.
s.e. smith: Yes! In a way it kind of reminded me of the myth that mental illness makes people naturally more creative. There’s that note of ‘scary and uncontrollable’ but also ‘we can use this.’
abby jean: “we just need to breed the good qualities and get rid of the bad ones.”
s.e. smith: Yes, and we just need to get it under control and then everything is fine. And we should put down the ones we can’t control.
abby jean: i thought the whole theme of “i know how i have to act to please the medical professionals” was quite well done
s.e. smith: Yes, and I also really liked the scene where she realises her aunt won’t believe her because of her diagnosis. Even though it later turns out the aunt has her own agenda going on, it felt very real.
abby jean: yeah, how aunt has a narrative going on know that she has no power to alter. and her own experiences and understandings are incorrect and deprioritized. for her own good.
s.e. smith: I think the book even used the term ‘lived experience’ at one point which blew me away.
abby jean: made me think of general discussions on on catholicism and exorcism, which are like “we have to protect these people from what they stupidly believe will help them.” because they cannot understand their own experiences. it was like “if these people are so backwards as to understand their mental illness that way, indulging it is doing them a medical disservice and anything that keeps them from psychiatric intervention is wrong.” which attitude i can see being applied to wrestling with was that a ghost or am i schizo, as mutually exclusive alternatives.
s.e. smith: It was also really interesting to see her coping with the diagnosis, when she thought that’s what it was. Going from freakout and calling herself ‘schizo’ to going ‘ok, this is part of me, I’m the same person, this is not my fault.’…And, you know, the way they treated the episode in the attic as a huge setback/failure, which in a treatment setting would encourage you to suppress your experiences.
abby jean: and how failure was so directly connected to loss of personal control, being kept there longer. freedom = reward for conforming. but then with tori showing how even that doesn’t work. even super conformity is still a failure and embarassment to the fam.
s.e. smith: And stepping up oversight, like with the urine samples. And there was also the whole thing with ‘we respect privacy and don’t talk about diagnoses’ paired with that social control that would have been impossible to miss. And of course you wouldn’t want patients talking to each other about their treatment. Because that might suggest they have agency.
abby jean: and finding common threads of being controlled is seen as a relapse.
s.e. smith: And building close relationships with other patients is deemed unhealthy
abby jean: well clearly their sexuality is totally out of control.
s.e. smith: Oh yes, obviously. *eyeroll*
s.e. smith: I also noted the use of outings to reward/control. Like, not even being able to go outside (even into a fenced and controlled area) without permission.
abby jean: and the nurses as security, medical oversight, and substitute family/domestic workers
s.e. smith: With total control over every aspect of their lives. It was also interesting to see the contradictory messages, like they aren’t allowed to stay in their rooms because it’s antisocial, but they also aren’t allowed to really interact with each other because that’s ‘not healthy.’ So you’re supposed to magically guess the ‘right’ amount of interaction to be rewarded, but no one will tell you what it is.
abby jean: and use your reason and logic to accept medical science and reject the idea of seeing ghosts, but do not use your brain to question anything else. what’s the right amount of reason?
s.e. smith: And, of course, stay busy with chores so you do not have time to think. Putting chores in the ‘free time’ part of the day.
abby jean: and only when you find the exact right amount, with no guidance or instruction and constantly moving goalposts designed to confuse and punish, can you be free to make any decisions for yourself.
s.e. smith: And of course you can’t ask other patients for guidance or mentoring because you aren’t allowed to talk about your diagnosis and will be fed a line of BS about how everyone’s progress is different, etc etc. Nor can you outright ask, because the staff will tell you there’s no formula.
abby jean: and that makes it look like you’re trying to game the system, rather than patiently waiting for the inevitably perfect outcomes that will result from just working their system. if you have to ask, you’re failing.
s.e. smith: Right, you’re supposed to organically understand it. Which is another example of how the lived experience is denied! Because people can say ‘I’m making progress’ and it’s ignored. It’s either assumed they are lying to work the system or they don’t actually know their own minds and bodies.
abby jean: and even compliance with the system can be denied. i really like having tori in there as someone who is trying really hard to work with the doctors and rejects the scheming and questioning and still gets fucked.
s.e. smith: Yeah she gets called the ‘pill princess’ and she’s basically ignored by the staff. That scene with her mother was really heartbreaking. Where her mother is screaming at her as though she, you know, enjoys whatever is happening to her.
abby jean: and the main doctor blowing her off.
s.e. smith: With all of the characters, it’s very much treated as something they should be able to control.
abby jean: even while they are systemically and purposefully being denied any control or agency.
s.e. smith: That was one scene that made me a little uneasy, when she was saying that Derek should be able to control himself and should have been able to prevent himself from hurting her, and he was agreeing with her. There’s a kind of hard line there, where, no, I don’t think it is acceptable to hurt people. But I also think that people do genuinely experience disassociations where they don’t know their own strength and can’t control themselves.
abby jean: i agree that some of their interactions felt a bit off to me.
s.e. smith: Like that scene in the opener where she’s kicking the teachers and the medics. She was basically lashing out the same way Derek did and we clearly weren’t meant to read her as accountable for her actions there. So it’s like where do you draw the line between something truly uncontrolled, and giving people a free pass on physical assault?
abby jean: true. i did think it was trying to say that the person who was assaulted should have some say/control over the punishment, that their experience should matter. so i guess we’d want to hear from the teacher/medic also, which we don’t.
s.e. smith: Yes, I definitely got that impression. And, to be fair, Derek also agreed that he should have been able to control his behaviour. So I don’t want to make the mistake of denying his knowledge of himself when critiquing that scene!
abby jean: he did. and his primary sense of guilt fwas from using it inappropriately. even though he didn’t really have knowledge/control when he was fighting in the playground.
s.e. smith: I think it’s possible to have a sense of guilt over something like that, while still knowing you couldn’t control yourself.
abby jean: i like that their superpowers were directly connected to emotional disturbance, so debating his werewolf strength usage seems more reasonable than thinking about what edward does as a vampire or whatever.
s.e. smith: Yes, yes it does! Speaking of supernaturally beautiful heroes, it was also interesting to me that the closer she got to Derek as a character, the less the book emphasized the fact that he’s supposed to be hideous.
abby jean: and the fact that some of his hideousness was connected to his powers, and as she accepted natural/supernatural differences she was more accepting of other differences. i feel like it took me half the book before i realized simon was supposed to be asian. was that a thing?
s.e. smith: It appeared to be! I enjoyed the way the book integrated people of colour without going ‘look at me! I’m inclusive!’ because it made me confront the way people usually read characters, which is usually white until proved otherwise. I also liked that we didn’t get a sense of supernatural superiority. The characters who knew what they were didn’t think they were better than humans.
abby jean: yes, and there didn’t seem to be any fight/hunt humans elements.
s.e. smith: Yes, and even though it was clear that a class of humans was a threat, they weren’t mapping that over to all humans.
abby jean: and chloe for a while was thinking about talking about things with her previous friends
s.e. smith: Yes, that storyline kind of petered out instead of being addressed. Once she started panicking about what would be in the ‘from’ line on her email.
abby jean: oh, yes. i forgot about that part.
s.e. smith: Which was kind of an interesting example of how people with mental illness get separated by stigma. She was allowed to contact people but she was afraid because she didn’t want them to know, so she was effectively cut off from the outside world.
abby jean: i was just typing basically that. and how it prevented the friends from even having a chance to react positively, so stigma hurts everyone even if you don’t have it!!
s.e. smith: And of course the whole storyline with them being cut off from Liz because she can’t be contacted for ‘safety.’ So basically, the only connections you can have are with fellow patients, but those get cut off as soon as they are transferred or ‘transferred’ in this case.
abby jean: and the idea that you don’t even know what potential options there are for you until they tell you what’s going to happen to you. who knew they could do that?
s.e. smith: Right, it’s like peeling back the layers of an onion. ‘You’ll be here for two weeks’ they say. And each day you learn that’s not only not true, but there’s a whole myriad of consequences for not following the rules. The rules that you don’t know because no one will tell you!
abby jean: but you are ostensibly there for stability and protection! to be free from worry!
s.e. smith: Everything is for your own good! Just relax and don’t think.
In summation: The Summoning is a book you might be interested in reading if you like young adult literature and you enjoy books where mental illness and denial of agency are explored!
©2015 FWD/Forward. All Rights Reserved..]]>
The A storyline in ‘All in the Family’ involves a woman believed to be in a persistent vegetative state. Her husband thinks she can be revived1 and asks for a consult with Amelia. Amelia does some screening, Addison notes that the test results reveal the woman is pregnant.
I thought ‘is Private Practice actually going to talk about rape and abuse in long term care facilities?’ And then I looked at the way the husband looked at his wife during the ultrasound and thought ‘oh, no, they are not.’ (Although Sam did helpfully tell us ‘this isn’t that kind of place’ when supporting the institution’s director in his pleas to not call the police to report the rape of a patient. Fail the first, Sam.)
Addison can’t even bring herself to say the word rape. She says ‘had sex with’ and ‘impregnated,’ but she doesn’t say ‘rape.’ The R-word did not cross the screen once during this episode, although at one point Addison mentions ‘consent.’ This is an episode that revolves around rape, and no one ever says the word.
Here’s where things start to get infuriating. Addison maintains that this is wrong, full stop. Ultimately, she calls the police to report that the husband molested his wife. If you are in a coma, you cannot freely consent to sex. If you are married to a person in a coma, your marriage license is not a marriage license for sex any time you want it. Georgie, the patient, was raped. No one says this, and everyone fights Addison on it and vigorously opposes her decision to pursue this to the fullest extent of the law.
Sam attempts to separate work/home life, not understanding why Addison is so enraged. In one scene, she tells him to go home because she has no intention of having sex with him while he’s being a disgusting rape apologist (I would say ‘I do not plan on having sex with you ever again‘ myself, but, hey, that’s just me). But, don’t worry, at the end of the episode, they kiss and make up, even after Sam informs her that she was wrongity wrong wrong and that poor husband was just a troubled man who needed some counseling, that was all. He’s not a rapist or anything, ew! (Although of course they don’t say that word.) And makes sure to let her know how angry he is, and how they will fight about it later.
Personally, I find the thought of being in the same house with someone engaging in that level of rape apologism (or any level, really) utterly abhorrent, let alone having sex with that person. The takeaway from this episode was that Addison was just being oversensitive and unreasonable; Sam says over and over again that she was wrong, the director of the institution wants to avoid culpability for a rape that occurred in his facility on his watch, and Sheldon even says ‘[Georgie'd] be appreciative about everything you’re doing’ to the husband, because evidently there’s nothing women appreciate more than being raped.
Private Practice completely stepped over and elided the very real problem happening right now of rape in institutions, where pregnancies of institutionalised women do occur, when the facility doesn’t insist on sterilising them or putting them on birth control against their will. It completely ignored the very real problem of martial rape, suggesting that marriages and relationships are like sex contracts, whether you are Georgie, comatose and unable to consent, or Addison, having sex with your partner even though he is a dirty dirty rape apologist scumbag. The conflict between Sam and Addison is treated as ‘a work-related spat,’ instead of what it is, which is a fundamental ideological problem; Sam believes it is ok for people to rape people, and Addison does not.
The episode closes with a scene of Charlotte King being pulled into her office by a stranger, who hits and abuses her. As the lights dim, the implication is that she is being raped. The following episode is All About the Rape and How Everyone Deals With It, and even involved consultation with RAINN, evidently. This makes this episode all the more horrifically distasteful; you do an entire episode about rape and apologism in which the word ‘rape’ is never used and the characters identifying it as nonconsensual sex are pooh-poohed, and then you follow up with a Very Special Rape Episode For Ratings and Awards?
Spot the differences here: One episode involves marital rape, the other involves stranger rape. Private Practice, trolling for ratings and praise, goes for the stereotypical stranger rape storyline (featuring, as an added bonus, a mentally ill rapist) while completely erasing a marital rape, even though it’s estimated that less than one third of rapes involve strangers (and that people with mental illness are far more likely to be rape victims than rapists). Thanks, Private Practice, for reinforcing the idea that the only rapes that ‘count’ involve mentally ill strangers who physically assault you.
Are you fucking kidding me, Private Practice?
©2015 FWD/Forward. All Rights Reserved..]]>
Haddad sued, arguing that she would suffer ‘irreparable harm‘ by being compelled to enter a nursing home, and the court agreed. The State of Florida was ordered to provide her with the community-based services she requested and was entitled to. Haddad will be getting a caregiver and staying at home, and we can chalk down another victory for disability rights. This is huge and I am really pleased by the positive outcome in this case. Haddad wanted to stay at home, she should have been allowed to stay at home, and it is heartening to read that the court ruled on the side of justice, bodily autonomy, and independence in this case.
The United States Government was also involved in the case, arguing on Haddad’s side. The Justice Department is currently fighting several discrimination cases, many of which build on the landmark Olmstead vs L. C. case that cleared the courts 11 years ago. Speaking about the Haddad case, Thomas E. Perez, Assistant Attorney General for the Civil Rights Division, said:
In the Olmstead case, the court recognized that the unnecessary segregation of individuals with disabilities stigmatizes those individuals as unworthy of participation in community life. By supporting Ms. Haddad in this case, we seek to ensure that individuals with disabilities can receive services in the most integrated setting appropriate, where they can participate in their communities, interact with individuals who do not have disabilities, and make their own day to day choices. (source)
I’m excited to learn that the Department of Justice is cracking down on discrimination and is specifically selecting cases that will promote full integration into society for people with disabilities. As I discussed a few weeks ago, passing antidiscrimination laws and winning victories in court isn’t enough to put a stop to discrimination and ableism, or to the social attitudes that allow for the dehumanisation and abuse of people with disabilities, but these cases do make a difference, and the direct involvement of the government shows that there is a genuine desire to address disability discrimination and to fight it.
Forced institutionalisation, as almost happened to Michele Haddad, has a long and very sordid history in this country. A common problem that I encounter in discussions about it is that it is not always recognised as such. The Haddad case seems fairly clear-cut: She clearly stated that she wanted to stay at home and she was told that she would lose services if she didn’t enter an institution. That sounds forced to me, and it sounded forced to the court, and most of the people discussing the case seem to agree.
But other cases are less clear. A lot of people with disabilities are not provided with information they could use to make choices independently. They are pressured by family members or care providers. Someone in a situation similar to Haddad’s might not be aware that home care was an option. All it would take is being whisked into an institution from the time of an accident and deprived of access to information suggesting that there are alternate modes of care. We see the same thing with decisions about medical care, where people aren’t provided with information and options, but simply told what to do.
‘Forced’ is a slippery word and it is not uncommon for people who want to deny that forced institutionalisation happens to find ways to weasel out of confronting it. After all, if you don’t say the word, it’s not happening, right? This persistent denial is one of the things that makes it so difficult for us to confront the real-world consequences of ableism. If we can’t get people to talk about the fact that forced institutionalisation happens, we can’t get people to talk about why it happens and we can’t get people to fight it.
Forced institutionalisation is not the only denial of rights and autonomy to people with disabilities that people think of as a thing of the past and believe doesn’t need to be addressed, countered, or fought any more. As a result, when we attempt to have conversations about these very real, very structural, and very present issues, we meet rhetoric like ‘oh, well, that doesn’t happen anymore, right? It sure was sad when it did, though.’
Michele Haddad, and thousands of people with disabilities all over the world, can personally testify that forced institutionalisation is not a thing of the past; here in California, for example, disabled activists are currently protesting cuts to In Home Support Services, a program that is vital for people receiving home care. Those funding cuts will result in institutionalisation for people currently receiving IHSS services.
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Photo from a 2009 protest against California budget cuts, taken by Flickr user Steve Rhodes, Creative Commons License
Astrid at Astrid’s Journal: Empowering People with Disabilities?: About Us, Without Us
You can bet that I was somewhat sarcastic with my invitation, given the fact that people with disabilities, the very people this event aims to empower, are specifically omitted from the invitation. If you want to empower us, then let us have a voice first. Empowering people with disabilities doesn’t happen without us. I sent Jason a comment at the event page letting him know his language excludes people with disabilities. I forgot to tell him that we already have Blogging Against Disablism Day, May 1, anyway.
Rob Mortiz at Arkansas News: Disability advocacy group seeks closure of Booneville center
[A] 22-year-old man with a documented history of choking on food died after center staff failed to provide the one-on-one supervision prescribed by doctors, Dana McClain, attorney for the Disability Rights Center, said during a news conference at the state Capitol.
“The continued violation of people with developmental disabilities civil and legal rights and Arkansas’ failure to develop true alternatives to institutionalization is what bring (us) here today,” McClain said.
LoHud Editorial: ‘People’ before disabilities
New York will finally update the name of the state office charged with ensuring fair treatment and quality-of-life to people with various developmental disabilities, not just by taking the “r” word out of the title, but by adding “people” to it.
The Office of Mental Retardation and Developmental Disabilities will now become the State Office for People with Developmental Disabilities, after votes taken last week in the state Assembly and Senate. The name change was originally introduced last year by Gov. David Paterson. Rhode Island remains the only state to have “retardation” in an agency title.
United News Media: Vietnam Enacted the First Disability Law
Recently the National Assembly of Viet Nam enacted the first comprehensive national law guaranteeing the rights of people with disabilities. The new law mandates equal participation in society for people with disabilities through accommodation and access to health care, rehabilitation, education, employment, vocational training, cultural services, sports and entertainment, transportation, public places, and information technology. This law is expected to have a direct impact on the growth of Viet Nam’s economy, as inclusive policies expand opportunities for Vietnamese with disabilities to be productive and achieve economic independence.
Harvard Law School: Disability rights victory in Europe won by alum with help from HPOD
In its judgment the European Court of Human Rights stated that the European Convention of Human Rights does not allow for an absolute bar on voting rights applied to anyone placed under partial guardianship irrespective of a person’s actual abilities. Even if the protocol permits restrictions to ensure that only citizens capable of assessing the consequences of their decisions and making conscious and judicious decisions should participate in public affairs, the Court found, a blanket restriction is not in compliance with the convention.
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This is Bonnie and Clyde! Clyde is a vision-impaired Border Collie and Bonnie is his assistance dog. Photo by Flickr user Lisa, licensed under Creative Commons.
Wheelchair Dancer: What Kind Of Life?
I don’t have the sense that I am kicking back slightly, leaning into life differently, because things matter less/differently now because I am disabled now, because I had a successful life beforehand. I don’t feel on a daily basis that I can let myself off the hook now because I manage to live, achieve, and make it. Disability isn’t a soft position for me. Since becoming disabled, I’ve remade my life, yes, but I have remade it in such a way that it is perhaps fuller and certainly physically harder and less comfortable (at work at least) than it ever has been. My life is more intense. Every small success means more because I have had to work harder for it than I ever had to in my previous life.
Cusp at L’Ombre de mon Ombre: Medical professionals and communication (ETA: Evidently this blog was closed after this Recommended Reading went up? If the author would like me to remove the link altogether, please email?)
Why is it then in such situations I always come to a point, no matter how much I rehearse my attitude and responses, where I feel like I’m at school and must do as I’m told: that I’m standing the in my nice grammar school uniform waiting to have whatever someone else thinks is good for me, done to or metered out to me ? I hate that feeling and hate myself for having that feeling 36 years after I have left school.
Jo Tamar at Hoyden About Town: A month of detention without review
Imagine a world in which you could be held by a government agency, against your will, for up to a month.
If you have a mental illness, that is now a real possibility.
Philip Wen at Sydney Morning Herald: Federal funds frozen for disability enterprises
Funding is regularly reviewed. The last deal was a three-year contract agreed under the Howard government, passing on an effective increase of less than 3 per cent a year. That deal expires next month.
But when the funding for next year was announced in this year’s federal budget, ADEs were in for a rude shock. The government had frozen funding, with no increase for indexation.
Shiva at Biodiverse Resistance: The fuzzy boundaries of accessibility
Both these conversations got me thinking: the first about what exactly i consider venues or events that are inaccessible to me, and whether i would expect my friends to boycott them because of that, and the second about whether it really is possible, even if desirable, to have a personal policy of boycotting all inaccessible events or venues. In both cases, the fuzzy, blurry question is – to me anyway – that of where the boundaries of the concept of “accessibility” lie.
Margery A. Beck at Associated Press: Appeals court: Union Pacific did not discriminate
She said in her lawsuit she did not know the evaluation was a mental health exam, and that Union Pacific used it to change her diagnosis and disability to a mental health condition, rather than a physical one.
Based on the mental health diagnosis, Norman’s long-term disability benefits were terminated, reinstated upon appeal, then terminated again, the lawsuit said.
©2015 FWD/Forward. All Rights Reserved..]]>
Last week, I read a horrific story in the Los Angeles Times about an employee of a retirement home who was sentenced to life in prison for torturing the residents. The story in the Times describes patients as ‘dementia ridden’ and ‘wheelchair bound,’ dehumanising them for readers and putting the focus squarely on friends and family. It’s not awful that this man kicked patients, punched them in the stomach, body slammed them, sexually assaulted them. It’s awful that he got caught and that their families know. The defense? That the accusations came from employees who ‘committed similar abuse themselves.’
This man was named ‘employee of the month.’ A medical examiner described the injuries to the body of one of his victims as like ‘being hit by a train.’
“Society is judged by how we care for people who can’t care for themselves,” Herscovitz said. “What could be worse than to have someone abused and not be able to communicate, to be trapped in their own body… and endure the abuse?” (source)
Again, the focus here is not on what happened to the victims, but what the abuse says about society and the perpetrator and the families of the victims. On the guilt experienced by family members who placed their loved ones in the facility. I see a parallel between the language used in these articles and the rhetoric from animal rights organisations like The Fund For Animals, which ‘speaks for those who can’t.’ It’s a pretty stark example of how people with disabilities are viewed by society.
This is not the only report of a ‘caregiver’ abusing people that has showed up in the news lately. In Santa Barbara, a man who sexually assaulted a disabled woman recently reached a plea bargain. Another graphic rape case from El Monte, California. In Des Moines, a disabled woman was raped by a ‘caregiver’ and her rape resulted in a pregnancy; the case would have gone undiscovered if it were not for that.
There is a consistent theme in the way that stories like this are reported. I wrote recently about how rapes of disabled women are framed as a crime against society, not the victim, and the same holds true for abuse. I get the impression, from the way that these articles are written, that the problem isn’t that human beings were tortured, sexually assaulted, and abused, but that ‘the helpless’ were subjected to cruelty and this reflects poorly on society.
It reflects poorly on society that we consider people with disabilities to be helpless. It reflects poorly on society that these narratives reinforce the idea that people with disabilities are incapable of protecting themselves and cannot report crimes committed against them, because this tells people who commit crimes like this that as long as they don’t get caught, they can act with impunity. The dehumanisation of these victims focuses on how awful it must be for their family members, how terrible it must be for them. Not on how awful it is to be a victim of violence.
Sometimes, I read stories where it seems to be implied that the victim doesn’t really understand, so the real source of heartbreak and tragedy is the knowledge of the family members. Never do these stories mention cases where people are not provided with the tools to communicate what is happening to them. Never do these stories talk about situations when people have reported abuse and have been ignored. Surely both of these things reflect poorly on society, don’t they? Why aren’t we talking about them?
These stories do not explore the structural problems involved. They do not talk, for example, about what it is like to be dependent financially and physically on someone who is abusive. On what it is like to know that reporting could end in retribution, institutionalisation, or even a return to the abusive caregiver. They don’t talk about the creation of enforced dependence, or why it is so hard to report abuse. Why it is that inmates of institutions can report abuse and nothing happens, but when their family members get involved, sometimes action is taken.
These stories are also presented in a way that suggests these cases are unusual. They are abhorrent, but they are not unusual. I wish that they were unusual, that caregivers who abuse were so extraordinary that such stories were blazoned across the major networks on the evening news. Unfortunately, this is not the case. Indeed, a quick perusal of Google News turned up a stack of cases from the last week documenting abuse perpetrated by caregivers. Some of these cases were so awful that I couldn’t bring myself to link to them, even with a warning.
People wonder why people with disabilities don’t universally trust caregivers, have concerns about institutionalisation, why sites like this one that centre the voices and experiences of people with disabilities exist. It’s because these kinds of cases are far from being uncommon, and because in most places, the myth that facilities that warehouse people with disabilities provide ‘care’ is alive and well.
As long as these stories keep being reported like they are unusual, as long as they keep dehumanising victims, the social attitudes that contribute to the abuse of people with disabilities will continue.
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Photo by Flickr user The Workers’ Party of Ireland, Creative Commons license.
CNBC: Panel approves removing “retardation” from laws
A U.S. Senate committee on Wednesday approved a measure to remove the words “mental retardation” and “mentally retarded” from federal labor, health and education laws to help remove what supporters describe as a hurtful label.
The bill, approved by the Senate Health, Education, Labor and Pensions Committee, would replace the terms “mental retardation” and “mentally retarded” with “intellectual disability” and “individual with an intellectual disability.”
Karen Dolan at the Huffington Post: World MS Day-Give Us Jobs or Give Us Wheelchairs
For many years, none of my colleagues knew I had the disease. It is hard to detect unless debilitating symptoms such as loss of mobility occur. A few years ago, I began to use a cane to walk. I began daily injections of a disease-modifying drug called Copaxaone. Last year, my colleagues and friends helped me to buy a WalkAide which my insurance company, CareFirst, refused to cover. Now, I am on a new “miracle drug” Ampyra, that enables me to walk almost as a “normal” person for several hours a day. I am one of the lucky ones.I have a job and health insurance. I am beating MS rather than MS beating me.
Sharon Wachsler at After Gadget: BADD: Q&A on Being an Assistance Dog Partner [Yes, I am still catching up on BADD posts!]
Q: Who trained your service dog (SD)?
A: I did. Yes, me, a disabled person! I train my own dogs!
Q: That was sarcastic and overly emphatic. How come?
A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”
Sharon Weinberger at Nature: Airport security: Intent to deceive?
“No scientific evidence exists to support the detection or inference of future behaviour, including intent,” declares a 2008 report prepared by the JASON defence advisory group. And the TSA had no business deploying SPOT across the nation’s airports “without first validating the scientific basis for identifying suspicious passengers in an airport environment”, stated a two-year review of the programme released on 20 May by the Government Accountability Office (GAO), the investigative arm of the US Congress.
Kai Wright at The Nation: Counting on the Census
But the challenges the Census faces are both greater and more complex than the mechanics of a head count. Families like the DeLeons—young and brown-skinned migrants—are driving rapid demographic changes in the United States. Many of these new residents are uncertain about whether government is a source of support or a threat—the long arm behind immigration raids, detentions and record-high deportations. The answer becomes less clear as the right stokes an increasingly polarized debate over immigration. The tea party’s smears of the government as an intrusive, untrustworthy force are often vocalized simultaneously with the charge that government sold out “real Americans” in favor of “illegal” menaces. In October, Louisiana Senator David Vitter tried adding a question about immigration status on the stripped-down 2010 Census form. He hoped to spark a fight about whether undocumented residents should be enumerated at all. The Congressional Research Service countered that the Constitution clearly dictates that the Census count “persons” living in the United States, not citizens. But the question Vitter sought to force is one the modern Census—with its mandate of rendering a national portrait in hard, tangible numbers—cannot avoid: Who does and does not count?
Ruth at WHEELIE cATHOLIC: Who’s Counting?
I tell them that when I ask a stranger for help, I’m sometimes told “You should bring someone along to help”. My inability to do physical things is seen as an unacceptable burden, a bother to some very vocal people.
This kind of attitude is why we have warehoused people with disabilities in institutions for years, out of sight. It’s as if some in our society are afraid of what would happen in a world where people who need help getting straws out of paper covers were set loose. Do they imagine hordes of us hitting Starbucks at noon, causing havoc by holding up the line and asking “Can you open this for me?”
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Everywhere, USA: My older siblings financially support and care for my sick elderly parent. My parent is admittedly happy as they do not want to live out their days in a nursing home. I live five hours away and get home only two or three times a year and do not earn enough of an income to help. While I appreciate my siblings’ efforts, I disagree with the diet my parent is fed, which is not healthy and caters to my parent’s every wish and whim. I also think that a nursing home is better equipped to care for my parent. This has created a divide in our once-close family. What can I do to narrow this divide?
Emily Yoffe: You can pitch in or shut up. If you’re a five-hour car ride away, you can come on long weekends and prepare the kind of healthy food you think your parent should be eating. Since you contribute nothing financially and rarely visit, and the other siblings have taken on the burden of caring for your ailing parent, and making him or her happy—as you acknowledge—be grateful they have relieved you of this burden. Stop complaining, start acknowledging the sacrifices your siblings are making, and do more so that when it’s all over, your siblings don’t forever resent you.
Let’s see. Everywhere lives five hours away from Aging Parent, doesn’t contribute financially, and doesn’t provide any other support. We don’t know what the circumstances are behind this; it sounds like Everywhere may work at a not so great job that pays poorly and doesn’t provide a lot of time off for coordinating trips home, so it’s good that Everywhere’s siblings are capable of providing care, since Everywhere cannot. This person ‘appreciates’ the ‘efforts’ of the siblings who are acting as care providers to prevent Aging Parent from being instutionalised, but disapproves…of what they are feeding Aging Parent. Because Aging Parent is being fed the food ou likes.
Solution? Stick Parent in a nursing home, of course! Because clearly community-based care from family members is inferior and wrong. Obviously Aging Parent has no established friendships or relationships in the community that might be disrupted by being forced into an institution. And it’s clear that ‘force’ would be involved here because it’s pretty strongly indicated that Parent is very happy to be at home, with family members. I wonder who will be paying for that nursing home, since Everywhere claims to not be earning enough income to help; nursing homes are rather expensive.
This sounds like a divide Everywhere has created, and that’s why I was glad that Prudie came back swinging. Although I could have done without Prudie’s referring to Aging Parent as a ‘burden’ and caring for a family member as a ‘sacrifice,’ the rest of this advice is right on point. Everywhere does indeed need to either start getting involved in caregiving, or zip it.
It doesn’t sound like Aging Parent is disabled, but this type of dynamic occurs both with people with disabilities and older adults. Family members chomping at the bit to pack them off to an institution so that they will stop being a bother. This a narrative that’s also supported and reinforced by the society we live in; look at this letter, where the person tries to claim that a nursing home is ‘better equipped’ to provide care than Aging Parent’s own family. I’m really glad that Prudie pushed back hard on this, because my jaw actually dropped when I was reading the question.
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Photo by Flickr user Deadly Tedly, Creative Commons License.
Astrid at Astrid’s Journal: Autism and Mental Illness
But why should it matter at all? Of course, sometimes, the misconception that autism is a mental illness leads to inappropriate treatment, such as unwarranted drugging, and it is rather necessary that the two be distinguished then. But when the only aim is acceptance for autistics, it should not make a difference. People with mental illness deserve and strive for as much acceptance, after all.
NPR: The Impact of War
This is the landing page for an ongoing series by NPR with both transcripts and audio available. I’d highly recommend the whole series, but ‘Disabled Veterans Face A Faceless Bureaucracy‘ may be particularly relevant to your interests; here’s a pullquote:
The number of outstanding claims at the VA for service-related disabilities — amputations, injured limbs, PTSD, brain trauma — hovers around 500,000. Nearly 40 percent of those have been waiting on a decision for more than four months.
And to make matters worse, another 100,000 claims are waiting for a decision at the Board of Veterans Appeals. The department has responded by hiring thousands of new claims adjudicators, a kind of brute force approach.
Snarky’s Machine: 20th Century Boy
What I found tragic was not their respective disabilities, which I’m sure presented challenges to them, but the way in which their bodies were suddenly appropriate for public discourse and each was suddenly defined by what their bodies could no longer do in a way I found diminished their continuing talents and contributions in their area of excellence. Their lives were not really theirs anymore and their bodies were expected to be everyone else’s educational opportunity.
Steve Schultze and Meg Kissinger at the Journal Sentinel: Supervisors call for firing of county mental health chief [Content warning: Rape, sexual assault, institutionalisation. Editorial comment: What. The. Fuck?!]
Three Milwaukee County supervisors turned up the heat Monday on the county’s top mental health official, calling for the firing of John Chianelli over mishandling of patient assaults.
Their remarks follow a report Sunday in the Journal Sentinel in which Chianelli defended housing female patients with dangerous male patients to quell male-on-male violence, according to written account by Supervisor Lynne De Bruin. Chianelli called it a trade-off that resulted in more sexual assaults of female patients, according to De Bruin and two other supervisors.
Hazel Dooney at Self Vs. Self: After the Crash, Part One [Content Warning, graphic description of a car crash, being trapped in wreckage]
What drove me to a break down last year weren’t the rigours of making art (although, I concede, the toxic enamel I used was enormously detrimental to my physical health). Rather, it was always trying to do what others – family, friends, doctors, even collectors – kept telling me was ‘right’.
Cynthia Hubert at the Sacramento Bee: Groups sue Sacramento County to halt mental health cuts
The lawsuit seeking class-action status, filed Thursday in U.S. District Court in Sacramento, contends the cuts violate various state and federal laws, including the Americans with Disabilities Act, and would be devastating to patients.
If the services are eliminated as planned on June 30, thousands of severely, chronically mentally ill people “will inevitably be exposed to increased harm of injury and death,” the lawsuit claims.
NPR1: Prudent Mabhena: Out Of Struggle, A Soaring Voice
“These children get locked away,” Williams says. “They’re hidden from the rest of society because the families are ashamed of them.”
Mabhena was born with arthrogryposis, a condition that deforms the joints; it has cost her both of her legs, and makes it difficult for her to use her arms. When she was born, her father’s mother advised her mother not to nurse her. After her parents abandoned her, she was cared for by her maternal grandmother, a rural farmer who kept Mabhena at her side as she worked.
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