Tag Archives: social treatment

Quick Hit: Parents of Disabled Children

13 August, 2010blaming, deaths, justice, representations, social attitudes, violenceautism, barriers to access, privilege, problematic attitudes, social treatmentkaninchenzero

This is gonna be short ’cause I hurt and it’s hard to think and type and all that shit what’s good for writing.

Another parent of disabled children has killed ou children. Ou regrets having done it and immediately notified police of ou actions. Responses of shock and horror from media and across internets.

But. It doesn’t take long before there are articles like “Parents of Children With Autism: We Struggle Alone” at the Dallas Morning News. This is bog-standard parent of autistic child shit and not worth reading. (Y’all may consider yourselves warned about clicking through and especially about reading any comments that may be present.) It is easily summarised: Parents say, “Oh that was so horrible I’d never ever never even think for a moment of harming my autistic child. But…” There’s a lot of subtextual sympathy for the person who murdered ou children. Just as there always is. In the midst of all the parents-are-on-their-own there are blithe assumptions that help is available. It costs a lot of money but is available. All the accompanying photos are of apparently white people in nice homes.

Nothing we’ve not seen before.

It’s notable because I happened to come across it in the print edition of the paper and its placement there. On the front fucking page of the Sunday fucking paper. Below the fold and tucked into the bottom right corner but still. Being parents of disabled children is so hard that killing them is an option many people will sympathise with is news big enough for the front page. Of the Sunday fucking edition. This is prime newspaper real estate.

The Dallas Morning News uses it for this shit. And my wife wonders why I’m so ‘hypercritical’ of news about disabled people.

On Centring Caregivers in Disability Discourse

12 August, 2010disability activism, politics, social attitudescare, caregiving, carers, parenting, privilege, problematic attitudes, rethinking social norms, social attitudes, social treatmentChally

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions. The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and Feministe]

…And At This Point, I Don’t See It Stopping Anytime Soon

11 August, 2010accessibility, disability activism, intersectionality, invisibility, justice, medical practice, military, oyd rants, policy, violenceabuse, Department of Veterans' Affairs, disability, disabled veterans, Eric K. Shinseki, exclusion, health care, health care is an accessibility issue, intersectionality, Military Sexual Trauma, myths and misconceptions, problematic attitudes, PTSD, social treatment, the dogdamned VA, things people sayOuyang Dan

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

Dear Imprudence: The Questions You Don’t Get To Ask

27 June, 2010Dear Imprudence, intersectionality, life changes, mental health, militaryfamily, invisible disability, Iraq war, Korean War, military, Miss Manners, PTSD, social treatment, things people say, war, war injuriesOuyang Dan

A concerned family member writes to Miss Manners:

Dear Miss Manners:

My brother served in Iraq a couple of years ago. He suffers from PTSD and was wounded. The physical wound is not one you can see, but people (family especially) will still ask him what it was like to fight in the war and even go so far as to ask if he killed anyone.

It never ceases to amaze me the way that people feel entitled to information about other people. They love to ask questions about your disability, and when a person happens to be a veteran and has seen combat, one of the first questions that comes up, almost without fail (unless that inquiring person happens to be a veteran or the family member/close friend of a veteran), is whether or not that particular veteran has killed some body.

Have you ever killed anyone?

I just can not fathom having to live with the reality of having lived through that burden, let alone having to deal w/ having to relive any of the emotions attached to that each time a thoughtless person asks “Have you ever killed anyone?”.

The letter writer wants to avoid having to stay away from a family function to keep zir brother safe from such carelessness from other family members, and honestly that breaks my heart. A PWD should not have to completely cut themselves off from friends, family, and other outside contacts to avoid triggering situations, but the reality is, this is overwhelmingly the way that it usually works.

I know for a fact that there are many veterans living in isolation because of PTSD, and yes, several of them are women, because of people who aren’t veterans, who can’t grasp what that must have been like (and not even all of us, as veterans can know what that is like), who can’t abstain from getting too nosy and triggering their PTSD. Why can’t we just have the same conversations as everyone else? Not everything in our lives revolves around our disabilities and our experiences in The Sandbox. Not everything is about the worst thing that has ever happened to us.

I like the way Miss Manners answers this letter:

Can you do this without creating consternation and even more curiosity about his condition?

She cautions the letter writer to caution the family to avoid the topic of war without creating a more awkward situation that might cause the family to avoid zir brother as if he is a ticking time bomb.

[He] will probably tell us about the war eventually, but right now it’s his least favorite topic, and I know he’d appreciate our staying off the subject.

This is the perfect way to describe this.

This is the 60th anniversary of the Korean War, the Forgotten War, many call it. My grandfather is a proud veteran and a Purple Heart recipient. He didn’t like to talk about the war with us, even when I was a shining eyed, curious young girl, who was almost never denied anything she asked of her grandfather. It was painful for him to remember, and the only time I ever saw him reminisce was when we traveled to Des Moines for his unit’s reunion many years ago.

But after I joined the Navy he sent me a letter at my A-School sharing a moment of understanding for what I was doing, and later, when my partner and I PSC-ed to Korea, he sat and talked to us for hours about what he remembered of the country. He told us harsh and sometimes beautiful stories of his memories. He told his of his marching from Pusan all the way to far North, of being picked up by Navy ships, transported back to Pusan and doing it again, after salvaging boots from the dead to cover their own bleeding feet. He tells it better, and I hope to get it recorded the next time I see him. But he told it to us in his own time, when it didn’t hurt him anymore.

I remember when The Kid’s Tae Kwon Do instructor told us of his memory of being a child during the war. A child in her class said that he was too young to do something or another well. The Master told us a story, of being eight, and of being held by his mother in a drainage tunnel and being told to not make a sound while North Korean soldiers ran over head. He was able to barely breathe, soundlessly, and stand against the side, like you see in movies, as they flashed their lights looking for people. He shared that story with us freely, and I remember the look on his face, as if he could still feel the chills of fear, like he was back there for a moment, but stronger now, sixty years later.

We have no right to ask them to regale us with the details of the horrible things they had to do to get by, to make a living for their families, to live, all because they were told it was the right thing to do. Or because they had to survive. They had a moment to think, but they have a lifetime to live with that decision.

People who live through wars will tell their stories when they are ready, because the pain will give them a moment of release, it will subside for a moment, or forget to pound them with the aggressive flashback or terror.

We, as people who have never lived through that, have no right to inflict that upon them.