Trigger Warning for sometimes graphic descriptions of human experimentation and medical research on non-consenting individuals

There’s a photo on my wall of a woman I’ve never met, its left corner torn and patched together with tape. She looks straight into the camera and smiles, hands on hips, dress suit neatly pressed, lips painted deep red. It’s the late 1940s and she hasn’t yet reached the age of thirty. Her light brown skin is smooth, her eyes still young and playful, oblivious to the tumor growing inside her — a tumor that would leave her five children motherless and change the future of medicine. Beneath the photo, a caption says her name is “Henrietta Lacks, Helen Lane or Helen Larson.”

No one knows who took that picture, but it’s appeared hundreds of times in magazines and science textbooks, on blogs and laboratory walls. She’s usually identified as Helen Lane, but often she has no name at all. She’s simply called HeLa, the code name given to the world’s first immortal human cells — her cells, cut from her cervix just months before she died.

Her real name is Henrietta Lacks.

– The opening words of The Immortal Life of Henrietta Lacks by Rebecca Skloot

Henrietta Lacks was a poor black woman, a tobacco farmer. She knew that something was wrong when she went to seek health care at the free “colored” ward of Johns Hopkins Hospital. She was diagnosed with a highly aggressive cervical cancer, and during her treatment — without her consent or knowledge — they cut out a piece of her. The cancer cells they cut are still alive today, are growing as I write this, are growing as you read it, are being bought, being sold, and being used for so many different kinds of research, I doubt there’s anyone who could name them all.

Henrietta Lacks died an excruciatingly painful death in 1951. And her cells have helped to develop seemingly endless medical advancements since then, and continue to develop them now. But just like Henrietta Lacks was never told that they cut out a piece of her cervix, her family was never told that here cells were still alive. The Lacks family only learned through a long series of events over 20 years later. Though those cells have made billions of dollars for various companies — both directly through the selling of HeLa to researchers, and indirectly through the selling of medicines and treatments HeLa has been integral in developing — they have not made a cent for the Lacks family. Indeed, at the time the book was written, many of Henrietta’s children and grandchildren continued to struggle financially, and several did not have health insurance to access the care that only exists because their mother and grandmother died.

The Immortal Life of Henrietta Lacks, written by Rebecca Skloot and released in 2010, is about all of this.

The Immortal Life of Henrietta Lacks is a piece of creative non-fiction, which  means that while it is entirely fact, the author heavily relies on narrative to get those facts to the reader. As a result, unlike with most non-fiction books, some of the details contained in this review could be considered spoilers by some readers.

The narrative of the book alternates between the scientific history of the HeLa cells and the personal story of the Lacks family, particularly Henrietta’s youngest daughter Deborah, who was desperate to learn more about her mother and see her get the recognition that she deserves. The book is not a “feminist book” in the sense that it does not offer a feminist or otherwise gendered analysis of the events it describes — though some relatively small race and class analysis is included. But I imagine that few who have even a passing understanding of the ways that gender, race, and class intersect and operate in U.S. society could manage to read this book non-politically.

Indeed, what was done to Henrietta Lacks and her body is as impossible to divorce from her gender as it is to divorce from her race and her class. It’s impossible to separate the violation and violence of removing a part of a woman’s body — a part of her cervix, no less — while she is unconscious, and without even bothering to ask, from the continued sense of public ownership over women’s bodies and reproductive lives, black women’s especially. It’s impossible to divorce that violation from the ongoing history of sexual violence against women, and sexual violence against black women by white men in positions of authority specifically. It is as impossible to divorce her treatment from her gender in the same way that it is impossible to divorce it from the history of non-consensual scientific experimentation on African Americans or the history of slavery or the context of segregated hospital wards. It is as impossible to render her gender irrelevant just as it is impossible to render irrelevant the notion that doctors felt poor patients owed the “donation” of their bodies for scientific research as a form of payment for their care.

The point is not that they would not have stolen from Henrietta Lacks’ body if she had been a man, or if she had been white. The book presents evidence, in fact, that they likely would have. The point is that context matters, especially when at stake are not only individual senses of trust and safety, but lives. Violations don’t occur in a vacuum. This violation was committed against the backdrop of racism, classism, and misogyny, as did the ongoing violations committed against her family.

At no point is this made more clear than through the story of Elsie. Elsie was Henrietta’s second child and oldest daughter. Elsie had both cognitive and physical disabilities, and required a full-time caretaker. Henrietta was the only one available to act as her caretaker, but she had four other children, including two babies — so after years of resisting, she did what doctors told her was best and sent her to the Hospital for the Negro Insane. She visited Elsie every week until she got sick, and then no one visited her. Elsie died a few years after Henrietta.

Elsie’s story is not told within the context of the devastation that Henrietta felt at relinquishing her daughter, but rather what was done to Elsie after she was committed. It is eventually revealed that she not only lived in horrific conditions marked by abuse, and died a horrific death, but also that she was the subject of abhorrent, non-consensual human experimentation because of her disabilities and institutionalization. They drained the fluid surrounding her brain and pumped air into her skull. They inserted metal probes into her brain. She would have suffered extraordinarily. These things were done to her because she was black and disabled. Because no one ever thought that she or her family might have a right to say no. Because no one cared.

What was done to Elsie matters simply because it does. It matters because she matters. But it matters within the context of the Lacks story for the way it illuminates the climate of abuse and brutality that the violations against Henrietta Lacks were committed. These violations were far from isolated. And they were also far from extreme by the standards of the day. What was done to Henrietta and what was done to Elsie existed at two ends of a spectrum, but they were both a part of the same racist, dehumanizing system.

The cruel irony is that Henrietta’s cells, too, have been used to do highly unethical testing on unknowing patients, largely those with disabilities. Though paling in comparison to the literal torture committed against Elsie, HeLa cells were injected into unknowing, non-consenting individuals — mostly those with disabilities or serious illnesses — in order to see if they would develop the same cancer that Henrietta had. Henrietta was not just violated at the hands of this system; her violation was also used as a means to further its abuses.

Without being pedantic or even particularly explicit, Skloot beautifully weaves together these two “separate” historical stories. Overwhelmingly, the point of telling the stories of the Lacks family’s many misfortunes is not to show what evils HeLa cells brought on their lives. Though the Lackses did experience trauma as a result of their connection to the cells, it is not the direct cause of most of their problems. Rather, their story serves to reveal that a great deal of their problems did stem from Henrietta Lacks’ death — and to remind us that it was only because a woman got extremely sick and died that so many of us have had access to treatments and vaccinations that have kept us alive. It’s to remind us that while Henrietta did not donate her cells, they were stolen from her, she and her family did make an unchosen sacrifice. It’s to remind us that researchers didn’t just take a part of her — they took the part that killed her. And she, and her family, are real people. Real people whose lives matter, too.

But they have been treated repeatedly as if their lives mean nothing. As if Henrietta’s life was not worth anything. As though the horrors those cells have imposed on their lives do not matter in the face of the medical advancements. As if their mother and grandmother did not have a right to her own body, and they do not, as her descendants, have a right to it on her behalf. As though their bodies mean nothing, too — and they do not, with their frequent lack of health insurance, have the right to access the care that only exists because their mother or grandmother died.

It’s long past time that Henrietta Lack’s story was told, that her family’s story was told. For the fact that it accomplishes that vital justice, and for the eloquence and sincerity with which Skloot tells the story not only of Lacks by the history of ethics in biomedical research, I couldn’t recommend The Immortal Life of Henrietta Lacks more strongly. This is a story that needed to be told, and that needs to be read.

Sadly, it is also long past time where things could ever truly be made right. Years cannot be undone, dead family members cannot be brought back to life. But the remaining Lackses do still deserve that which has always been rightfully theirs, as well as our gratitude, though it seems that those who most owe it to them are not going to be the ones to provide it.

As promised to Deborah Lacks while she assisted in writing the book, Rebecca Skloot has set up the Henrietta Lacks Foundation, which provides funding for education and health care to the descendants of Henrietta Lacks. Again, while billions have ultimately been made from Henrietta Lacks’ stolen cells, her family has never seen a single cent from their use, and family members are often without health insurance, and without access to the funds needed to access higher education. Anyone can make a donation to the Henrietta Lacks Foundation by clicking through to their website.

Today, the LA Times reports on the state of mental health care in California state prisons. Namely, they report on an aspect of how that care is delivered, now that the courts have mandated that treatment be provided even to inmates in maximum-security prisons: with the patients locked inside individual cages. Yes, really.

Before group therapy begins for mentally ill maximum-security inmates at California prisons, five patients are led in handcuffs to individual metal cages about the size of a phone booth. Steel mesh and a plastic spit shield separate the patients from the therapist, who sits in front of the enclosures wearing a shank-proof vest.

When the lock clanks shut on the final cage — prison officials prefer to call them “therapeutic modules” — the therapist tries to build the foundation of any successful group: trust.

The horrifying irony is enough to make one break down and cry.

The level of dehumanization here is appalling. Ultimately, of course, prison is not generally incredibly different from being locked inside a cage — the cage is just a little bit bigger. And people’s mental health conditions don’t magically just disappear when they’re not in therapy; indeed, imprisonment often has a way of exacerbating such conditions. But a critical part of responsible and effective mental health services is precisely treating its subjects as human. Being treated as human is in fact something that many people with mental health conditions, especially those who also live with other marginalized identities, are not at all used to. To rob patients who are also inmates of that vital dignity and compassion is unconscionable.

Perhaps the saddest thing of all is that with prison inmates being so disproportionately low-income, and mental health services being so inaccessible to those without insurance (and even many with), these sessions are the only form of mental health care that many of these patients can ever hope to receive. And they’re getting it not only within the racist, classist, ableist, misogynistic, transphobic, homophobic context of prison, but also while literally locked inside cages.

For some inmates, the conditions get even worse:

At institutions where space is tight, the therapy modules have been arranged in the middle of inmate living quarters with multistory cell blocks towering overhead; their bored occupants are looking down, taunting.

“You go down for therapy and there are guys screaming and yelling at you from every floor,” said Jane Kahn, an attorney who represents inmates in the ongoing litigation. Aside from making the sessions difficult, exposure to other inmates obliterates the sense of confidentiality essential for worthwhile therapy, Kahn said.

With various experts quoted in the article arguing over the merits of the treatment, I certainly can’t claim to know whether or not receiving therapy under such conditions is better or worse than nothing at all. But I do know that even under the best case scenario, in which patients genuinely are receiving some benefits despite the many enormous problems with the system, “better than nothing” is no excuse for straight up dehumanization.

It’s also impossible to divorce this dehumanization from the racism and other prejudices inherent in the prison system, and negligent to ignore the connection. Those being locked in cages are disproportionately people of color. They’re disproportionately poor. They all have mental health conditions. They are, in other words, those who the U.S. has historically treated like animals in more way than one, and this is just a particularly egregious example of how that history continues into the present day.

Further while I agree that the therapists need to be kept safe from potential violence — though I’ll note that no one mentions concern over the safety of other patients — mental health care providers are the most vocal critics of these policies. One makes a particularly astute point:

Among Stewart’s concerns is the fact that some mentally ill inmates remain in disciplinary segregation units, receiving therapy in cages, until their parole dates arrive.

“So one day you’re so dangerous that you have to be in a cage and the person talking to you is sitting at a distance wearing a flak jacket, the next day you’re sitting on a bus,” said Stewart. “That’s scary.”

While the context of his words is not entirely clear (and it’s therefore possible that the implications are ableist), I do in fact also find the scenario to be scary. Putting people in cages one day and then expecting them to interact positively with their communities the next is unrealistic and frighteningly irresponsible. Telling people that they’re so dangerous they can’t be trusted in the vicinity of other human beings, and then immediately releasing them unrestricted amongst other human beings without consideration of the potential consequences for all involved is scary. Failing to prepare people for their release with humane treatment and increased trust and responsibility is unbelievably reckless and terrifying. Treating people like this specifically because they’re inmates and then attempting to justify it is scary.

Precisely which contortions people are willing to employ for the sake of justification are also scary:

Metzner also advised prison officials to refer to the enclosures as therapeutic modules, not cages. “The name is important, because if you call them cages, people inside might feel like animals and respond accordingly,” he said.

If you have not yet clicked through to the original article, please do so now. Before reading on, take a moment to look at the photograph of precisely what we’re referring to when we say “cages” and to assess for yourself just how little of an exaggeration the term is.

What immediately strikes me is the idea that if you don’t call them cages, those inside them will somehow not realize that they’re inside cages. If we just treat the dehumanization as normal, they won’t notice that they’re being dehumanized at all.

What strikes me secondly is that the concern seems to be over the patients potentially deciding to act like animals and make life difficult for the therapists and prison officials interacting with them. There’s little concern, as far as I can gather, of what impact being treated like an animal, feeling less than human, will have on the emotional and psychological well-being of those we see fit to put inside the “therapeutic modules.”

In part, though far from entirety, this problem traces back to the overcrowding of California state prisons I wrote about last month. The reason that the release of prisoners has been ordered is because of the appalling level of medical and mental health care, and the determination that conditions would not improve without a dramatically reduced population. It is sadly true that the release of prisoners will inevitably mean that some people who are in need of mental health care will be among the released, and therefore not receive services. And that’s wrong — as I argued in the last post, while prisoners most certainly should be released, failing to support them and provide them with needed resources is not only not ideal, it’s a societal failure.

But the fact that prisons got so overcrowded in the first place is a failure, too. The fact that some inmates are being provided with mental health care while locked in cages is a failure. We’re at the point of more failures than can be counted. And when we’re at the point of putting people with mental illnesses in cages in order to “treat” them, it’s well past time to look at them honestly and make really big changes.

via @sesmithwrites

Trigger Warning for discussions of violence against women with disabilities, and discussions of sexual violence particularly within the context of psychiatric units.

Last week, news broke in the Australian state of Victoria that women who are patients in psychiatric wards are being routinely sexually harassed and assaulted by men who are patients in those same wards. The Australian Broadcasting Corporation (ABC) reports:

The Victorian Women and Mental Health Network is calling for more wards to be segregated after reports of patient harassment and sexual assaults.

Victorian wards were de-segregated in the 1960s because of a perception that sharing spaces with women would help male patients.

The network’s chairwoman, Heather Clarke, says the assaults hinder the victim’s ability to cope with and recover from mental illness.

“Threats and intimidation, unwelcome sexual advances, sometimes males entering bedrooms and at times even sexual assault,” she said.

“This is very concerning when it’s recognised that a majority of women, 70 per cent of these women, already have past histories of physical or sexual abuse so these volatile environments are re-traumatising.”

Ms Clarke says while some facilities have female-only spaces, a lack of resources means it is not always enforced.

“Some wards have created women’s corridors, but there a number of issues with those corridors,” she said.

“There may not be enough beds in them for all women to be admitted and when they need extra beds for men they sometimes admit men to those those corridors.”

Well, it would have been nice if, when desegregating wards because of a perceived benefit to male patients, someone had bothered to ask what the impact might be on the women. That said, very few people with even a passing familiarity with these issues will be surprised by such revelations and accusations, and readers of this blog might recall that I’ve written about this very subject before. Unfortunately, a passing familiarity is much more than most people seem to have.

Julie Dempsey, a woman who has been a patient at various psychiatric units in Victoria spoke to the Age about her experience of being assaulted in a ward and witnessing other sexual assaults. Her comments offer invaluable insight:

”You’re told to go to hospital so you will be safe, but people are often put into vulnerable positions,” she says.

”I no longer feel comfortable even visiting someone in hospital, let alone voluntarily putting myself in as an inpatient to a psychiatric facility.

”Something needs to be done to make them safer.”

Like the rest of this story, what Dempsey has to say is not surprising, but it is devastating. It’s no secret that sexual violence almost always has a negative impact on the victim’s mental health, not infrequently going so far as to cause or otherwise trigger a mental illness (such as post-traumatic stress disorder or depression, to name only a couple of examples), or exacerbate one that’s already present. And, as the ABC articles note, 70% of women who are patients in Victoria psychiatric units already have a history of physical or sexual abuse, due both to the link between victimization and mental illness and women with disabilities’ particular likelihood of being chosen as victims by perpetrators of violence. That sexual violence is not good for women already struggling with mental illness is one hell of an understatement.

But clearly, this violence is not only having a direct negative impact on mental health, it’s also preventing women with mental illness(es) from seeking out treatment and services that they may otherwise feel would be beneficial to them. Inpatient psychiatric treatment is definitely not for everyone. But it certainly should be an option for those to whom it does look appealing. And if a woman feels that such treatment may be appropriate and helpful for her, but she is too afraid for her personal safety to seek it out, that is an enormous violation. I highly doubt that Dempsey is the only woman whose prior experiences with violence inside psychiatric facilities has caused this option to be taken entirely off the table for her.

Further, the fact is that not all patients in psychiatric units have freely chosen to be there. This is an issue that needs addressing outside the scope of this post and my knowledge base. But being forcibly placed in treatment against your will is usually traumatic and can be damaging enough to one’s sense of safety. Forcibly confining people in treatment against their will while placing them in an environment that subjects them to the constant threat of sexual violence is unconscionable on a whole new level.

I can’t claim to have the answers. While sex-segregated wards will strike many as an obvious and easy solution, they’re not without their problems, particularly as it concerns trans* patients. Wherever sex segregation is enforced, trans men and women are much too frequently placed by cis people in the units inappropriate for their genders, not only denying their identities but also placing them at risk of violence. Further, non-binary identifying trans patients are put between a rock and a hard place, and forcibly identified with a gender that does not belong with them as well as placed in an environment that may not be safe. While sex segregation almost certainly would reduce the rates of sexual violence by cis men against cis women, there’s a large possibility that it would come at the price of increased rates of violence (sexual and otherwise) against trans* people of all genders (or non-genders), when they likely face some of the highest rates of violence already. And that is a trade off that should be considered unsettling at the absolute least.

The fact of the matter is that gender integrated wards are also hardly the only cause of the problem here. Indifference and rape culture are also major issues:

Network chairwoman Heather Clarke said several sexual assaults had been reported to the network recently, including the rape of an 18-year-old woman by a male patient in an acute adult psychiatric unit.

”She had previously told staff that he was harassing her but they had dismissed her concerns,” Ms Clarke said.

Segregating by gender won’t ultimately have the full desired impact if abusers are still not being dealt with once they have been identified. Rather, the abusers will just get craftier or pick new victims. Further, in addition to failing to address violence at its roots, this strategy alone lets abuse enablers off the hook. Everyone deserves safety, no matter what their mental health or disability status. But there is an extra responsibility to keep safe those who have been placed in restrictive and vulnerable environments. That staff in many (quite possibly most) units are not up to the task, and indeed are sometimes abusers themselves, is a part of the problem and needs to be addressed if freedom from violence is actually to be accomplished.

Trigger Warning for graphic descriptions of violence against people with disabilities, school violence, and victim-blaming.

As evidenced by a recent post, violence of all kinds is a major problem in schools, and school administrations not only frequently fail to respond appropriately to said violence, they’re also often a direct part and/or cause of the problem.

Another example, this time of a lawsuit launched in response to non-sexual violence, was recently sent to me by Kali at Ithaca PAVE. Two years ago, a disabled child was assaulted by a bully on his school bus — as he screamed and cried for help, the school bus driver two seats in front of him watched the attack and did nothing. It took another student to stop the assault. The circumstances of the assault get even more egregious once it’s taken into account that the child’s individualized education plan states that he is to have an aide with him on the school bus — an aide who was most certainly not present on the day of the attack.

Now, years later, the elementary school student remains traumatized, afraid of school, and in need of further services as a direct result of the assault. And the school refuses to make appropriate changes to his education plan.

According to court documents, on May 5, Coolbaugh’s son got on the bus after school and sat three seats behind the bus driver Jeffrey Postle. Another student got on shortly after and sat near him, purposefully pushing into him. The student began slapping and kicking Coolbaugh’s son, which her son apparently interpreted as horseplay and not bullying in nature, the complaint says.

Coolbaugh’s complaint states the student then began kicking and pushing Coolbaugh’s son in a violent manner. He borrowed a pen from Postle and began making threatening stabbing motions toward Coolbaugh’s son.

The complaint states that an on-board video camera captured the events, and that the driver can be seen in the video glancing up in the rear-view mirror at the activity in the bus. The boys were within hearing and view of the driver, Coolbaugh alleges, but the driver made no attempt to stop the harassment or protect Coolbaugh’s son.

The student then began “beating (Coolbaugh’s son) with his fists and violently threw (him) into a seat behind Postle and upon the floor under the seat and then proceeded to pound (him) about the head and shoulders with his fists,” according to the complaint.

Coolbaugh’s son called out for help from the bus driver. The boys were eventually pulled apart by another student, court documents say.

…

“My client approached the district with these circumstances and the school district responded by failing to provide any of the specific request that my client had made,” Kopko said. He said the district refused to accept changes to the boy’s individualized educational plan. “Our contention is that this boy was emotionally traumatized by this assault such that he is in desperate need of additional educational services. That is the aim of the lawsuit – not so much monetary damages, but to give this child FAPE [free and appropriate public education].”

Surveillance footage of the assault as it is described above can be viewed here.

There are several things going on here, with regards to failures by the educational system to protect the students in its care and the treatment of people with disabilities by society at large.

Most readers here who have ever ridden a school bus will have at some point been on at least one end of bullying and harassment. Many will have at different points throughout their childhoods and adolescences acted as both bullies and victims — myself included among them. Big news stories since I stopped riding a school bus have left me with the impression that little has changed. School buses are places where bullies, harassment, and violence thrive. And as all current or past school bus passengers know, students with disabilities, particularly cognitive or intellectual disabilities, are especially vulnerable.

Bullies seek out targets that are particularly vulnerable and who lack social support. By therefore choosing targets who face systemic marginalization on the basis of identity, they’re simply being perceptive about who society values and will bother to support.

In terms of how the driver in this case responded, I think that we’re talking about a case of basic human decency. A student was literally screaming out in distress, and not only did he fail to pull the bus over and help the student, he didn’t so much as utter a word. Adults, no matter what their occupation or relation to the children involved, are ethically obligated in situations like that to do something. That it took another child to take action is despicable.

But recognizing the bus driver’s individual failure and placing the responsibility where it belongs, it’s also important to note that while things can vary greatly among different school districts, training for bus drivers in handling such episodes is frequently limited or even non-existent. It’s not just an individual failure, but a systemic one. Further, while this was clearly a major episode, recognizing and responding to smaller ones while trying to do one’s primary job — safely driving a bus full of children — can be extremely difficult.

I know that when I was a kid, I would have met suggestions of school bus chaperons with horror. For me, at the time, the bus was a place of freedom. And I still think that places where kids can be kids without facing the constantly watching eye of adults are important. But I now know that a part of that supposed “freedom” was my ability to pick on students more vulnerable than I was and the ability of students less vulnerable than I was to pick on me. I know that a part of the “freedom” was enabling of racist, ableist, sexist, homophobic, classist, and fatphobic harassment. I know that it was watching plenty of assaults, most of which I have probably forgotten, including numerous sexual assaults against my friends — all of which faced no repercussions.

And I know that all of this didn’t happen because “it’s what kids do,” but because it’s what kids think adults do. And I now know that as kids, we sadly weren’t all that far off in our suspicions.

Schools have a responsibility to counteract this perception not only through not tolerating this kind of behavior among students, but also by modeling their own behavior to ensure that the perception is at least a little bit less true. Right now, the Trumansburg Central School District is clearly doing a very poor job on all fronts.

After failing to provide an aide to the student who was explicitly supposed to have been provided with one,¹ the school has since failed to take responsibility for its disregard for students with disabilities and willingness to treat their needs as secondary to those of other students. The disregard continues, with the school claiming that the assault was not their fault, and therefore it’s not their responsibility to provide the student with a new education plan — even though the student needs such a plan to effectively learn in their school. This final point is what the lawsuit is most directly about. Despite the fact that it should not matter who is responsible when it comes to whether or not the school is obligated to provide all of its students with an accessible and appropriate learning environment, the school’s line is “not our fault, not our problem.”

They’re also engaging in some mighty nice victim-blaming:

The complaint says that the district failed Coolbaugh’s son in several ways, by not protecting him from bullying, not properly implementing the provisions of his IEP, not adequately training and supervising its employees, and other ways. Prior bullying leading up to May 5 put the district on notice that Coolbaugh’s son was facing a dangerous situation and the district could have anticipated further problems, the complaint says.The district denies that anyone could have foreseen the alleged harassment and claims Coolbaugh’s son instigated the altercation, that he was a voluntary participant in the conflict and was aware of the risks of roughhousing on the bus.

So no one could have foreseen that something like this might happen, but dammit, that kid knew what he’d be getting himself into if it did. This kind of talking out both sides of their mouths excuse-making — who knew that this could happen? except the victim, of course, who totally should have known better — ringing any bells for any one else? These are clear echos of rape culture and more proof of how all forms of violence and oppression are connected.

Many members of the community are also doing a poor job modeling basic decency and anti-ableist attitudes. While seeming to be a clear-cut case, the comments on the linked article (trigger warning) are also filled with victim-blaming, both against the child and his mother. They range from calling the mother “sue-happy” to saying that bullying is a part of growing up to arguments that the mother could just place her child in a private school to allegations that this is her fault for not driving him to school herself.

There’s a lot of apologism and classism in these comments — not everyone can afford private school, not everyone has a car, not everyone’s job has a schedule that allows them to drive their kid to school — but also a lot of ableism. The understanding here is that abled kids are “normal” and deserve to have their needs met, while disabled ones do not. The attitude is that students with disabilities, and all people with disabilities, are on their own, with no obligation from society at large to be decent and as equally accommodating to them as it is to those without disabilities. The consensus for these folks is that we — as individuals, as institutions, as a society — do not have the same responsibility to protect people with disabilities as we do towards all other people. In these people’s view, the rights that abled people have to be safe and go about their lives free of violence do not apply to people with disabilities.

And that’s how these kinds of assaults happen — not just because one kid was an ableist jerk, but because far too many of us are generally ableist jerks, who will similarly deny certain people’s bodily rights and autonomy.

Trigger Warning for graphic descriptions of neglect and abuse against people with disabilities.

Today is Blogging Against Disablism Day, which takes place on May 1st of every year. At this blog, I tend to write an awful lot about different forms of violence and abuse against women. I’ve talked in the past about various ways that ableism intersects with violence against women, but I thought that today would be a good opportunity to revisit the issue.

Yesterday, I came across this really horrific story on a woman who was arrested for extreme neglect of her sister. Michelle Burnham was the caretaker for her older sister Patricia Rowe, who has a developmental disability. When police found her last week, Patricia was living under absolutely horrible conditions (again trigger warning):

A hungry 54-year-old woman, with the mental capacity of a toddler, was found lying on a bare mattress in a Portsmouth Avenue basement last week, covered from neck to knees in her own urine and feces. Patricia L. Rowe had been lying there for so long, police said, the mattress had the permanent imprint of her body.

Her sister, Michelle R. Burnham, 31, who owns the home on the 800 block of Portsmouth Avenue, was arrested Thursday and charged with felony abuse and neglect of an incapacitated adult.

According to police records, Burnham identified herself as the primary caretaker and the payee on her sister’s government checks.

“It’s not as bad as they’re making it out to be,” Burnham said just before her arrest Thursday, standing on the front porch of her small, dilapidated white house.

At least six adults, four children and half a dozen dogs live there. Burnham said that she’s been her sister’s caretaker since their mother passed away in 2001.

Rowe, who was emaciated, was taken to the hospital, where she stayed for two days before being released into the care of a brother in Bluff City, Tenn.

She was covered in bug bites and a rash, which police suspect were caused by general poor hygiene and lying in urine-drenched clothing.

It’s certainly true that caretaking can be a lot of work, and more accessible, affordable support services are desperately needed. This, however, does not in any way seem to be a situation where a caretaker was struggling to keep up and let a few things go. This clearly presents as a case of extreme neglect. There is absolutely no excuse for leaving a person starving, alone, and covered in their own bodily fluids for weeks or more on end. That is not okay. That is abuse.

As I’ve expressed many times in the past, abuse is normally committed when perpetrators do not see their victims as fully human. And perpetrators generally base a large portion of their determinations about who is and is not fully human on cultural messages about which people and lives are worth the most, and which people and lives society cares about. In this case, that determination was almost certainly based hugely on ableist narratives.

When people with disabilities are seen as not fully human, it’s easy to stick them in a back room and forget about them, as was done with Rowe. When humanness and inherent worth are assigned usually and exclusively to those perceived as intelligent and those who are able to communicate by conventional means, it can be easy to let people with developmental disabilities go hungry, to isolate them from society, and to ignore basic health and hygiene. And when one is taught that people with disabilities don’t really count, it’s easy to assume that no one will notice or care about abuse committed against them. Just like when women are seen as less human than men and lacking in real bodily autonomy, it’s easy to beat and rape them. (And the fact that Rowe is a woman quite possibly also played a role in the decision to neglect and abuse her.)

When ableist notions about who is worthy of love, care, and even basic decency and human rights reign supreme, it’s also easy to excuse and push aside abuse. This comment from a neighbor struck me as particularly familiar:

Pam Helbert, a neighbor, said she watched as police took the woman from the basement and loaded her into an ambulance.

“It ain’t newspaper-business bad,” she said. “They hadn’t changed her diaper. OK. So she had a pissy diaper. That’s it. It was not that bad, for sure.”

How many connections are there here to the victim-blaming and minimizing tropes so commonly used against rape victims and victims of intimate partner violence? How many parallels to the dismissive and harmful “So she got drunk and there was a misunderstanding — this isn’t worth ruining a young man’s life over”? How many similarities to the minimizing “They had a lover’s quarrel and things got out of hand. Why get the police involved in a private matter”? How many shades of “Fine, he was wrong, but it’s not like this is rape-rape”?

Victim-blaming quite frequently upholds different forms of oppression, and uses different kinds of prejudice to make its case. But the intent is the same: to support perpetrators of abuse by discrediting and devaluing the lives, experiences, and personhood of victims. And the effect is also the same: a world in which violence against marginalized bodies is deemed acceptable, and where an alleged perpetrator’s version of things is always valued over the word and worth of those who have been abused.

Until we eradicate notions about which people are most “normal,” superior, and deserving of the right to partake in society, violence-free lives are not going to be a reality for those who are currently most vulnerable. Ending violence involves more than talking about the right to be free of violence; sadly, it also involves convincing people that this right is one that marginalized folks actually deserve. Abuse is about power, and abled privilege is one of the many forms of power that abuse is used to enforce.

Yesterday, a federal appeals court ruled that a class action lawsuit against Wal-Mart, for alleged discrimination against female employees, can go forward. For almost ten years, the company has attempted to block the lawsuit, and is still unprepared to give up:

A federal appeals court ruled Monday that thousands of female Wal-Mart employees can sue the world’s largest retailer as a single class over allegations that it paid them less than men and gave them fewer promotions.

The 6 to 5 decision by the U.S. Court of Appeals for the 9th Circuit in San Francisco is the latest step in a nearly decade-long battle to bring the case to trial. Wal-Mart said that it now plans to request that the Supreme Court review the ruling. But attorneys for the women said they hope the case will go to trial by the end of the year.

…

The appeals court did not rule on whether discrimination occurred at Wal-Mart but on whether female employees could sue the company collectively. The original class covered women who have worked at Wal-Mart’s sprawling fleet of about 3,400 stores since 1998, initially estimated to number about 1.6 million, which would have made it the nation’s largest sex discrimination case.

But the appeals court decided to carve out female workers who left the company before the suit was filed in 2001. Sellers estimates that the class still encompasses more than 1 million women, but Wal-Mart said the number has been whittled to roughly 500,000. The circuit court also referred to a lower court the issue of whether employees can seek back pay and punitive damages.

It seems that Wal-Mart essentially believes it has some kind of god given right to be an enormous corporation that controls a ridiculous portion of the U.S. economy, while not having to answer to ethical and legal issues at the same scale at which their company exists. They instead believe they have the right and privilege to individually fight claims — a privilege that would work very hard against individual employees, who do not have the resources to bring their own cases, and who may have a much more difficult time proving their allegations on a one-on-one, David vs. Goliath basis. This stance is unsurprising, but it is despicable.

The specific allegations against the corporation, which may or may not be heard by a court soon, primarily involve discrimination against female employees concerning both pay and promotions, as compared to their male counterparts.

The original case named six plaintiffs led by Betty Dukes, a Wal-Mart greeter in California, who accused the company of paying them less than their male counterparts, despite having higher performance ratings and more seniority. They also claimed that they received fewer promotions and had to wait longer for them. The women are represented by the nonprofit Impact Fund and several other groups.

It seems that while the case does not specify discrimination on the basis of disbability, some of the allegations certainly indicate that the discrimination at hand did have ableist undertones:

According to plaintiffs, female workers were routinely steered away from management positions and into such jobs as cashiers, with little chance for promotion. Court documents cite one woman who was told she was not qualified to manage because she could not stack 50-pound bags of dog food.

While the woman seems to believe that her promotion was denied on the basis of her physical strength as a woman, there are of course lots of people, both men and women, who cannot lift 50lb bags for various reasons. Making it a requirement of a managerial position, when stacking 50lb bags is presumably a very small part of the role, is thus also discriminatory on the basis of disability.

This is interesting, as Wal-Mart of course seems to be a company that prides itself on its diversity, regularly placing people with disabilities and elderly people in highly visible employment positions within their stores. Meanwhile, just as they do with their other employees, they pay those visible, marginalized workers very little, ensure that they work less than full-time, don’t offer affordable health benefits, actively bully would-be union organizers, and create a cycle of poverty that ensures their employees have to put all of their earnings back into Wal-Mart’s stores. Visibility is potentially a great thing — it’s an incredibly insidious danger, though, when it’s used to mask irresponsible, oppressive policies.

Wal-Mart also uses its superficial successes regarding diversity as a defense against allegations of wider, better hidden discriminatory policies:

Wal-Mart said it has made significant strides to support female employees and noted that it was named one of the 10 best companies to work for by Pink Magazine, which is aimed at women in business.

I don’t know very much about Pink Magazine, and have never read it. But a brief glance at their about page indicates that it’s a publication aimed at middle and upper class women who work outside the home, not working class women who make a vast majority of Wal-Mart’s female employees. Presumably, their choice to name Wal-Mart on their list was intended as an indication to their readers that managerial and office positions within the company are a good option, and didn’t care about the backs of working-class women that this advice stood upon.

Because as mentioned above, Wal-Mart’s business practices, and the effects they have on individual workers and communities, has been extremely well documented. Countless articles, books, and documentaries cover the subject. Wal-Mart doesn’t just put local stores out of business or cause pollution. They also pay their workers near poverty wages, fail to offer health insurance that their employees can actually afford considering their wages, and leave these workers so broke that they are regularly eligible for public assistance. Their wages may be somewhat inline with industry standards, but they’re also unacceptable when Wal-Mart is the largest retailer in the entire world — and a retailer that is perfectly willing to spend mind-boggling sums of money and enormous effort busting unions, often illegally. Meanwhile, shoppers — including their own employees — are locked into shopping there, due to the lack of local competition and low incomes that create the absolute need to stretch every dollar.

Even assuming that the women represented by this lawsuit win, it’s not going to shut Wal-Mart down, or even likely result in a great revision of practices. But one can hope that it will have a small impact. And its about time that Wal-Mart paid out to its employees at least part of what they’re owed.

Dissenting judges expressed worry that this ruling will open the door to many more Title VII class action lawsuits against national and international companies. Personally, I’m just bemused that they say that as though holding the rich and powerful responsible for their discrimination against the vulnerable and oppressed is a bad and scary thing.

UPDATE: This Newsy video has more, including some interesting factoids and speculation about the chances of the ruling being overturned.

A transcript of the video is available here.

Yesterday, I had my hair cut.

As the stylist called my name, she asked if I would like a shampoo. I politely declined. She then noticed how thick my hair is and she said she was going to take me back to the sink to wet it. And being incredibly used to this, I readily agreed and followed.

But just as she had finished wetting my hair and I expected her to turn the water off, she started squirting stuff on my head.

I froze. I’m not great with confrontation, especially with strangers, and have difficultly forming exactly what I want to say in just a short moment. She kept rubbing my head, then squirting some more, rubbing and squirting, rubbing and squirting.

The salon smell was all around me, and finally when she’d finished rinsing, only to squirt yet more stuff on my head, I blurted out “so what’s all this stuff you’re putting on my head?”

“You don’t use conditioner?” she asked incredulously.

Once she’d finished lecturing me on why I should use conditioner, I opened my mouth again to say, “I mean, before, too. You put a lot of things on my head.”

“Oh, that? It was shampoo. Don’t worry, I’m not going to charge you for it. It just makes my life easier.”

The problem was that it made my life a whole lot more difficult.

You see, I’m allergic to almost all artificial scents. Quite a few popular natural scents, too. I can’t walk down the shampoo aisle, or the soap aisle, or the laundry detergent aisle in the store. I have to go to natural food stores and actively seek out all natural, unscented products, which is usually not an easy task. I can’t use normal cat litter or home cleaning agents, I can’t borrow a friend’s lotion, and I cringe at being around someone who is wearing cologne or perfume. If these products are actually put on my body, it’s a very unpleasant thing, indeed.

So I sat there through my actual haircut just waiting for it to be over, and begging for it to end soon. I tried to take breaths as shallow as possible, to keep as much of the scent out of my nose as I could. When she asked, this time, whether I would like any product put in my hair, I declined and said “I’m allergic to most products, actually.” Her “oh” was a guilty one, and I dropped other plans to rush the 20 minutes home and hop directly in the shower. My third shampoo and blow dry for the day complete, I could finally breathe again.

Contrary to how this post looks, I’m not writing it because I want to complain about a bad experience in customer service. I don’t doubt that the stylist was genuinely trying to make her own life easier, and genuinely thought she was doing me a favor in the process. I’m writing this post because of the simple fact that a favor to one person is not a favor to another. I’m writing this post because such situations are so common and can be so very, very easily avoided.

In the end, it could have been a lot worse. While I’m allergic to just about everything, my allergies aren’t particularly severe in the big scheme of things. My nose itches and runs, my eyes burn, and my head hurts. But I don’t usually break out in hives or a rash. I don’t get migraines and need to lay down for hours after exposure. My eyes don’t water, my skin doesn’t puff up, and my airways don’t close. I don’t have chronic pain issues that could be triggered by certain scents. I don’t have sensory issues that make it difficult to be touched. And surely there are many, many other problems I don’t have that I don’t even know enough to be aware of.

Though I don’t consider my own personal allergies to make me disabled, this is in part a disability issue. It’s in part about the way that most people seem to assume a “norm” and forget the huge number of people who don’t fit it, and who can be harmed by the assumptions. It is in part about the way that certain conditions are made invisible, forgotten about, or assumed to not exist until or unless told otherwise.

But ultimately, while accessibility, accommodation, and awareness are huge issues, and I think that every one of us should do our best to learn about those disabilities that we ourselves do not have, the problem I had yesterday was not even an issue of someone not being aware enough of what precise impact her actions could have on me. Though it certainly could have solved the problem in this particular instance, the ultimate cause of it was not her failure to consider that not all people can well-tolerate just any product being put on their bodies.

The issue was consent.

Consent is not just an issue in sexual situations, though we tend to talk about it largely as though it is. Consent is something that we negotiate or fail to negotiate in all of our interactions with other people, every time we touch or ask if we can touch. In this case, I consented to having my hair wet down. I didn’t consent to having product put in my hair, or to having my scalp massaged. My consent was assumed, and falsely. And while quite likely most people would have easily consented if asked “is it okay if I shampoo your hair free of charge,” I wouldn’t. The only way to know whether or not a favor is really a favor is to ask.

It’s wrong to take a person’s consent to one activity as consent to all related activities. And while those of us in anti-violence work already recognize this, it’s more than time to extend the principle beyond sex.

Many feminists and disability rights activists have made the argument long before I have, but I think it’s worth a repeat and a revisit. What if we didn’t assume our right to touch in everyday, non-sexual situations? What if we didn’t just take for granted that a certain touch will be okay? What if we were to not consider our own desires and thoughts about a certain touch, but those of the person we’re touching? Many would undoubtedly argue, and have argued, that the world would be a much colder and less intimate place. But I argue that it’d be a far more communicative place. It’d also be a world much safer to a wide variety of people. It’d be a world with a far more genuine respect for bodily autonomy and personal rights.

And yes, it very likely would transform the way that we view sex and sexual assault. If we viewed all touch as not a right but a privilege, all physical contact as requiring consent rather than acquiescence, our views on what a sexual interaction looks like and on what constitutes rape would also undoubtedly transform. But even if they did not, bodily rights matter in all circumstances, and reclaiming them in all situations, including those that are non-sexual, quite simply just matters. Our autonomy does not begin and end in the bedroom, or center around our erogenous zones. Our bodies belong to us, and every part of them has value.

Trigger Warning for graphic descriptions of sexual violence.

Moodybpgirl recently wrote about a really horrifying case in which Montana State Hospital at Warm Springs paid a six-figure settlement to a woman who was raped during her stay there, by a fellow patient who also just so happened to be a convicted sex offender.

A female patient at Montana’s psychiatric hospital was reportedly raped by a convicted sex offender in March 2008, and the state recently paid a $375,000 settlement to avoid litigation in the case.

More glaring than the sexual assault on a mentally ill, newly committed patient, however, is the lax supervision and lack of oversight that allowed the rape to happen at a state-run hospital, according to a Montana civil rights group that investigated the claim.

Disability Rights Montana, a private nonprofit law firm required by the federal government to investigate allegations of abuse or neglect, not only found that hospital personnel failed to comply with their own policies – a lapse in procedure that gave a convicted rapist unfettered access to the hospital’s general population – but that other patients notified staff of the rape while it was in progress, and yet still no steps were taken to investigate the claim.

This rape was entirely predictable and preventable, but hospital staff did nothing. They gave a convicted sex offender who was categorized as having a strong likelihood of offending again unsupervised access to female patients, and failed to tell other patients of the fact that he was a rapist.

When she arrived in March on the hospital’s Spratt Unit, which houses both male and female patients, K.G. did not know that violent sexual offenders and sexual predators were allowed to commingle with other patients in the general population.

Hospital staff, on the other hand, did know that Jason Marshall was a Level 3 sex offender who in 2002 was convicted in Missoula County of raping a 12-year-old girl. A Level 3 designation on Montana’s three-tier sex offender registry means the person is at high risk of re-offending.

…But instead of assigning him to the hospital’s forensic unit, which is reserved for dangerous offenders and patients convicted of crimes, Marshall was placed in a treatment unit for patients with co-occurring disorders.

They further left patients unsupervised to the point where Jason Marshall was able to stalk and groom his victim extensively, and then had the opportunity to rape her not once, but on two different nights. And then, when told that the second assault was currently being committed, they ignored it. (Again, TRIGGER WARNING — please take care of yourself, and be safe rather than sorry.)

At about 2 a.m., Marshall coerced K.G. to perform oral sex on him, “and she did so only as a result of his coercion and the duress exerted upon her.” She then went to bed and told no one what happened.

The following day, Marshall continued to pursue K.G., indicating that he wanted more oral sex, that he wanted to have sex, “and making other objectively predatory comments,” the claim states. K.G. rejected his advances and said she did not want to have sex of any kind.

That evening, Marshall instructed another patient to have hospital staff unlock a restroom, and then prop the door open with a towel. Marshall then coerced K.G. into the bathroom and demanded oral sex. She began experiencing flashbacks from prior sexual abuse, and asked to leave the bathroom, but Marshall forced her to stay. He alternately forced her to perform oral sex on him and watch him masturbate.

“K.G. believes she was trapped in the bathroom for approximately 1.5 hours, yet no staff ever came looking for either Marshall or K.G.,” according to the claim. “K.G. was crying and shaking violently as she left the bathroom, as at least one other patient observed. What is most troubling is the fact that a patient expressly informed an MSH employee that he believed Marshall and K.G. were engaged in sexual relations in the men’s bathroom, but the employee did nothing to intervene.”

Jason Marshall is entirely responsible for his decision to rape this woman multiple times. But Montana State Hospital is also entirely responsible for their decision to place a convicted sex offender in a position where he could easily access, groom, and assault women in a position of particular and extreme vulnerability. While I’m pleased that the victim in this case won her settlement, and I sincerely hope that she receives some sort of closure from it, a monetary payment neither excuses, nor makes up for, nor resolves the fact that a man who chose to rape was able to do so because Montana State Hospital let him.

But they seem to think that it does precisely that. In spite of making this payment, the hospital has determined that there was no evidence of negligence by the hospital staff. They further argue in their defense that Marshall was not previously accused of harassing or assaulting any other patients — as though the lack of an accusation necessarily means that an assault did not occur, when in fact victims regularly do not report assault for various reasons, and when a failure to receive any reports could also just as easily be a further sign of negligence.

The fact is, this type of abuse is not uncommon. Moodybpgirl has written previously about the staff negligence and sexual abuse at the same hospital. And in a post on the same topic (but not the same incident), Anna at FWD/Forward writes about how people with disabilities, particularly women, and particularly those who have been institutionalized, are at disproportionate and very high risk of being sexually abused.

Women with disabilities are made vulnerable to sexual predators by a society that ignores their safety. They are made vulnerable by a society that pretends sexual abuse is about sexual attraction and simultaneously desexualizes and hypersexualizes people with disabilities (resulting in the notion that a) no one would be “attracted” enough to a disabled woman to assault her, or b) “she must have led him on”). And they are made vulnerable by a society that not only fails to believe abuse survivors when they speak of what was done to them, but also fails to believe people with mental illnesses. And those women who are made vulnerable by these manifestations of ableism and misogyny are also those who are regularly placed in situations of severely restricted agency, such as a psychiatric hospital. It’s inconceivable that a rapist would not use that situation as a site for his violence.

And still, many fail to see how any negligence took place here. Perhaps in part not because the assault was so unimaginable, but because it’s difficult to view as negligent that which is so routine.

I’ve heard a lot of heartbreaking and enraging stories in my lifetime, but this still manages to rank pretty highly up there. Health care providers never gave a woman with cancer and her husband, both of whom were deaf, a repeatedly requested interpreter. And thus, they weren’t told for three months that she was dying.

For three months, the Nelsons met with doctors at North Memorial Medical Center, but they weren’t aware Mary Ann was dying of cancer. In fact, they thought she was doing well enough in her battle with the disease that she could go to her retirement party. So they were stunned in March 2006 when her oncologist abruptly put an end to their hopes — and their request — with a terse note saying, “We can’t cure the cancer!”

It was the first time the Nelsons, both deaf, understood the cancer was terminal, according to the Minnesota Department of Human Rights. Mary Ann Nelson died in May 2006.

The agency pointed to the incident as an example of the medical team’s failure to communicate effectively with the Nelsons. This week, state regulators announced that North Memorial agreed to pay $105,000 to settle charges that Nelson and another patient were not provided access to qualified sign language interpreters. Often, David Nelson had to read lips or write notes to communicate with doctors and nurses, despite his repeated requests for an interpreter.

“It was extremely difficult and painful for them,” said Rick Macpherson, Nelson’s attorney. “They couldn’t ask any questions. They couldn’t have any discussion. They couldn’t get any kind of comfort.”

I imagine that this news is among the worst that can ever be received, even with all of the empathy in the world. The very idea of receiving it like this, and three months after it should have been received — precious time that very well may have been used quite differently had the information actually been conveyed — both makes me want to sob into my pillow, and causes my blood to boil.

Every person involved, from the doctors to the administrators, behaved appallingly and unforgivably. Mary Ann Nelson had her very basic right to information about her own health and her own medical treatment denied and betrayed. And those responsible, in addition to flagrantly violating the Americans with Disabilities Act, acted both in breach of basic medical ethics and basic human decency. Outside of a few strict exceptions (i.e. a patient is unresponsive or unconscious and in need of immediate care), everyone deserves and needs the right to make informed decisions about their course of medical treatment, and to fully understand their condition. That’s basic bodily autonomy, something that doesn’t become any less of a right just because a person needs an accommodation to access it. And basic bodily autonomy is something that both women and people with disabilities have been regularly denied.

And sadly, we can’t just trust everyone to treat marginalized people with dignity and respect. When people are marginalized, objectified, and discriminated against, they start to appear to us as less than human. As I find it hard to believe that so many doctors would find it acceptable to treat people this way — after all, while abled folks do regularly get appalling medical treatment, you don’t hear stories like this everyday — I can only, logically conclude that they perceived the Nelsons, because of their disabilities, as not really being people. They were treated like objects, there to act upon, things with whom its too much of a burden to communicate, who don’t deserve access to information, who don’t have any rights.

Oppression is capable of inspiring and supporting all kinds of atrocities. But this idea, that some people are worth less, that some people are too much trouble, that some people, for whatever arbitrary reason, are less deserving of rights and necessities than we are, is always at the root. Very frequently, it costs lives. This time, it “only” cost Mary Ann Nelson information about the last few months of hers.

via FWD/Forward

Kaney O’Neill is a 31-year-old mother with a 5-month-old son. Her ex-boyfriend, and her son’s father, is now waging an ugly custody battle against her. So far, it’s an experience that countless parents have endured. What makes O’Neill’s story newsworthy, if not rare, is the fact that she has a disability — and her ex is using that disability as evidence that she is an unfit parent.

In September, Trais sued O’Neill for full custody, charging that his former girlfriend is “not a fit and proper person” to care for their son, Aidan James O’Neill.

In court documents, Trais said O’Neill’s disability “greatly limits her ability to care for the minor, or even wake up if the minor is distressed.”

O’Neill counters that she always has another able-bodied adult on hand for Aidan — be it her full-time caretaker, live-in brother or her mother. Even before she gave birth to Aidan, O’Neill said, she never went more than a few hours by herself.

The custody case, expected back before Cook County Judge Patricia Logue next month, raises profound questions about what rights disabled parents have to care for their own children.

Ella Callow, the director of legal programs for the National Center for Parents with Disabilities and their Families, said disabled parents are incorrectly “perceived as unable to perform to standard.”

“No judge wants to be the judge who sends a child home when the child gets hurt,” said Callow, of the Berkeley, Calif.-based advocacy group.

Callow said the bias against disabled parents is such that judges tend to grant custody to an able-bodied partner “even if they have a history that might usually be a heavy mark against them — not having been in the child’s life, a history of violence, etc.”

What Trais is attempting is repulsive, wrong, and inexcusable. But the bigger problem is that parents who try to pull this type of nonsense have a whole lot of backup. It ranges from the multitudes of ignorant online commenters who have agreed with him, to the judges who have ruled previous custody cases based on one parent’s disability, to complete outsiders who feel the right to speak on the matter as experts (emphasis mine):

But Howard LeVine, a Tinley Park attorney not affiliated with the case, said Trais’ concerns are legitimate and may hold legal weight.

“Certainly, I sympathize with the mom, but assuming both parties are equal (in other respects), isn’t the child obviously better off with the father?“

LeVine, who has specialized in divorce and custody cases for the last 40 years, pointed out that O’Neill would likely not be able to teach her son to write, paint or play ball. “What’s the effect on the child — feeling sorry for the mother and becoming the parent?”

Well here we see a bias exposed in all of its glory: you see, Mr. LeVine, all things being equal, the disability wouldn’t factor in to this decision at all.

The fact of the matter is that if O’Neill were not able to access the support she requires in caring for Aidan, that would be far from a failure of parenting, but a result of our society’s ableist structure. But, in this case, O’Neill actually does have access to those resources. She is not raising Aidan alone, she is raising him with the assistance of her full-time caretaker, her mother, and her brother who lives with her.

And so, it seems to me that the allegation being made against O’Neill is not that she is failing to ensure proper care for Aidan. The allegation appears to be that she is failing to care for Aidan entirely by herself, without any outside assistance.

This is flat out ableism. The assumption that one is not as valuable, responsible, or worthy because they rely on support systems and the help of others is blatantly denigrating to people with disabilities. Specifically with regards to parenting, it also has a history of being incredibly sexist, and I imagine that this is playing into the response to O’Neill’s parenting, as well.

Mothers are constantly ridiculed and reviled for not being able to do everything at once. Mothers who use daycare, babysitters, familial support, and the help of friends, are frequently looked at as lacking in maternal skill and maternal love. And while even mothers in heterosexual couplings tend to take on the bulk of childcare, this prejudice hits single mothers particularly hard. It’s true that some have in fact had to cope entirely on their own, and are doing so as we speak. But no one should ever have to. And looking to one’s community for help should never be used as a mark against their parental fitness.

But that’s exactly what those onlookers judging O’Neill now are doing. It’s also what actual judges have done in the past when they’ve ruled against disabled parents in custody disputes, even when the other parent has a history of neglect or abuse. In other words, many times over, it has been decided that an abusive and neglectful parent is a better caretaker than a loving and attentive parent who needs the help of other caretakers. That ought to make us all feel ill on numerous levels.

I don’t know who would be a better parent to hold custody of little Aidan. Mothers are not automatically better parents than fathers, there seem to be no allegations of abuse on either side, and so apart from thinking that Trais is quite the bigot, I can’t make that judgment. But I do know that a judge would be appallingly wrong to make the decision based on O’Neill’s disability. I do know that saying a parent must be able to play sports in order to properly care for her child is ableist and absurd. I do know that a child is much more likely to grow up “feeling sorry” for his disabled parent if he is exposed to those attitudes which say that disability is a tragedy worthy of pity. And I do know that reproductive rights don’t end when a pregnancy is terminated or when a child is born, but that they need to extend to the right of women to parent their own kids, even when those women have an identity that is marginalized and devalued.

via FWD/Forward