Category Archives: i’m right here

Love and Relationships: Pity’s Got Nothing To Do With It

One of the relationship tropes that irks me most when it comes to talking about partnerships where at least one person is disabled is the idea that the relationship only exists because of pity, often paired with the idea that disabled people will take any relationship they can get out of fear that they will be alone forever, sobbing quietly in a dark corner1.

I see these paired ideas reinforced all over the place. Heck, I was watching some Six Feet Under the other day, and there’s a scene where Nate keeps pressuring Brenda as they fight about their relationship, which is kinda falling apart (this is an Alan Ball show, you think it’s going to depict happy, functional relationships?!). For those not familiar with the show, Nate has an arteriovenous malformation that plays a central role in the show and in this scene, he says that Brenda only wants to stay with him out of pity, as he’s recently told her about the diagnosis.

Brenda looks at him and basically says ‘dude, if I didn’t want to be with you, I’d leave you. I want to marry you because I love you, not because I think you’re an object of pity and I feel responsible for you now because you got diagnosed while we were together.’ It was a really nice twist on the way these stories usually play out, where we end up seeing that the nondisabled2 partner really did stay with the disabled person out of pity and ends up feeling burdened and angry and there’s a whole big scene.

I see it in advice columns, where people are told they have an obligation to stay with disabled partners simply because of the disability (or just the opposite, that disability is a get out of relationships free pass, in some cases). I see it all around me, where someone acquires a disability and everyone assumes either that the person’s partner will feel ‘an obligation to see it through’ or will leave now, because, you know, the diagnosis, it changes everything and makes it functionally impossible for the parties to love each other anymore. After the chair, of course, no one would expect the relationship to continue, although it would be very heroic of the nondisabled partner to go ahead and stay anyway. Because what would a disabled person have to add to a relationship, even one that predated the disability?

I know a lot of disabled people, a fair number of whom are in relationships, many of which are with other people with disabilities. One thing I don’t see in those relationships? Pity. Because pity’s got nothing to do with it. Although we are often framed as objects of pity and sadness by the media, although many campaigns intended to raise awareness about disability issues play the pity card hard, pity is a shitty foundation for a relationship. Relationships founded on pity don’t last. Those founded on other things, like say mutual interests or love or, gasp, sexual attraction? They last. The disability is part of the relationship, it may complicate it at times, but it’s not a relationship ender or dealbreaker, and isn’t treated as such.

I always say that wanting to leave someone because of a disability is a shitty thing to do, although disabilities can certainly intersect with larger relationship issues and may ultimately contribute to a decision to separate. But wanting to stay with someone because of a disability is also kind of a shitty thing to do, and I hate how it’s commonly promoted and reinforced in pop culture. At the same time people are told they must stay with people who are disabled, they’re also told that disability is a burden, a ball and chain that will ultimately make the relationship miserable. This is not my idea of a good time, or anyone’s, I imagine; no one would like the idea of a partner staying out of obligation, let alone a partner stewing with resentment.

Hand in hand with the idea that pity is the sole factor in why anyone would want to be involved in a relationship with a disabled person is the thought that we are not choosy or picky about relationships because we cannot afford to be. We take what we get, according to pop culture, because we have no other option. We can’t hope for anything better so we settle for abusive relationships or relationships where we’re not happy3.

Uh, newsflash? We have lots of choices. And we can, just like everyone else, choose not to pursue relationships with people we don’t feel compatible with or aren’t interested in. We can also choose not to engage in relationships with people who are clearly pursuing or staying with us out of some strange, misbegotten sense of ‘service,’ where they are somehow ‘helping the community’ by taking one for the team and dating a disabled person even though ew gross.

Just like everyone else, we can also be involved in exploitative and abusive relationships. And sometimes disability plays a role in that as well, but pity? Also absent. There’s no ‘pity’ when a disabled person stays with an abusive nondisabled person out of fear of losing a caregiver or a home, for example.

I think many of our readers (and contributors) who have been involved with nondisabled people can relate at least one incident where the people around them made it clear that they thought their partners were staying with them out of pity. And for relationships where everyone’s disabled? The belief that disabled people only date each other out of pity and fear (rather than, say, interest in each other) is widespread; what better a person to date a cripple than another cripple, right?

  1. I am imagining a stock photo here of a sadfaced person slumping in a wheelchair facing the wall
  2. Or less disabled, although it’s rare to see two PWDs together in a relationship in pop culture simply because there are so few representations of us at all.
  3. I see the same attitude coming up with fat people, where it’s assumed that fat people aren’t desirable, so fatties will take whatever we can get when it comes to relationships because we have no choice.

An open letter to abled people who like to glare at people who use disabled parking spaces

Also see: An open letter to abled people who use disabled parking spaces by Annaham, which this is jumping off from. Since I drafted this, s.e. also wrote Dear Imprudence: Who Appointed You the Parking Police?!

Dear abled people who like to glare at people who use disabled parking spaces,

Hi there. It’s great that you’re so conscious that disabled parking spots are for disabled people! I’m pleased you’re so keen to keep disabled spots for disabled people – after all, that’s the law and the right thing. People who aren’t disabled certainly shouldn’t be using those spots.

However, you know what my problem with what you do is? My problem is when you take your anger out on people who are using those spots legitimately. I don’t know if you glare and shake your head and tut because you don’t notice the disability signs/stickers on the front of the car – or if you think they’re faking their disabilities – or if you think those crummy disabled people simply don’t deserve to hog the best parking spots. I don’t know if you do this because you don’t expect to encounter disabled people out and about, so you think the parking spot user isn’t legit. I don’t know why you’re letting dominant narratives crowd out the person there in front of you.

I’d also like you to keep in mind that some people who need disabled parking spaces are prevented from getting the sticker. The red tape involved can be incredibly difficult to negotiate, especially for someone running on the second shift for the sick. Some people who need stickers fall through the cracks formed by the “we need to tighten restrictions because of the tiny number of fakers!” meme.

Just keep in mind that, just as there are a lot of people out there who use disabled parking illegitimately, there are also a lot of people who make life harder for people who are using the parking legitimately.

Don’t be one of them.

Sincerely,

Chally

Happy Veteran’s Day! You Don’t Exist!

I received a message on Facebook today (my personal account, not FWD/Forward’s account, which is not currently being updated because *ahem* Facebook seems to refuse to fix their blog importing tool and I can’t keep up with manually posting it every day…but I plan to try… /Facebookrant). It was one of those “fun meme” invitations, asking me to participate.

“Change your profile picture!” it said, “For Veteran’s Day, it would be great if we all changed our profile pictures to a picture of a veteran!”

How odd…said I. I haven’t changed my profile picture in almost a year…

It continued: “It doesn’t have to be a picture of your husband! Just any picture of anyone who has or is currently serving would be great, and a great way to honor our veterans!”

I might have just deleted it except for that last part. It doesn’t have to be a picture of your husband…

I think about how many times I would attempt to do anything official on the phone, and would asked for my husband’s social, instead of the sponsor’s (that is military speak for the military member who sponsors the dependents for benefits).

I think about how many times I would pick my kid up from daycare after PT, in my full Navy PT gear, and someone would ask me if my husband was in the Navy.

Mostly, I think about the way that the VA is still scurrying to keep up with the care that women veterans need. Some put the number from Iraq and Afghanistan alone at 200,000 active duty women, excluding National Guard and reservists. Women are left behind, with no resources, or resources scattered so far and away that they are inaccessible to those who need them most.

Which is why pieces like this one from NPR kind of really irk me, when they seem to mislead broad audiences. Somehow trying to imply that that the VA is some kind of miracle worker, reaching out to every woman veteran who is in need of services, and that they are meeting the diverse needs of women veterans. It is putting up a lovely window dressing on a filthy, dirt covered window, making sure enough of the filth is smeared out of the way so you can see a very narrowed scope of things from your apartment. The fact is they are hardly meeting the needs of their male veterans, in the ways of mental health, or meeting needs in a timely manner at all. Women veterans, however, are not having their needs met. They are missing the same marks with women, but completely whiffing on things like women-specific health, military sexual trauma, and accessible centers. We could ask Ruth Moss about all the extra ways they failed her, or the homeless women veterans with children who have no where to turn because the closest facility that can help them is a thousand miles away, and usually isn’t run by the VA anyhow.

Today I went to a Veteran’s Day Ceremony here on our base. I won’t go into details about how the President — who is here in Korea — was supposed to be there, or how they changed it at the last moment. I watched as VFW representative,s dressed in their various hats, went around and thanked the collected men in uniform in attendance. I stood there, a (friend’s) baby strapped to my chest, while my daughter, in her Brownie uniform, handed out  programs to the guests.

I was just another wife, with a gaggle of girls around me. Taking up space, snapping pictures, getting in the way. It never occurs to anyone that the passel of wives standing around may also have served a purpose in the peace that is being observed. We are unremarkable, though something to be glared at if our baby starts crying while the General is speaking.

The VA is not making progress towards addressing the needs of women. And they won’t because our society doesn’t recognize us. Women — wives — are mutually exclusive from veterans and servicemembers.

We are invisible. It’s like we don’t exist.

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Dear Imprudence: Yeah Hi I’m Actually Right Here

Back in July, the following letter/response ran in Dear Abby:

Dear Abby: I am the parent of a child with special needs. To an outsider he looks different; adults and children stare at him when we’re out. My son is not aware of their impolite behavior, but I am — and it really irks me. What should I say to these insensitive people? — Boiling Mad in New Jersey

Dear Boiling Mad: I don’t think you should say anything. It is not unusual for individuals of every age to do a double take when they see someone — or something — that is “different.” Of course staring is impolite, but unless someone makes a remark or asks a question about your son, you should ignore the person.

Abby got some reader mail in response, so she decided to run a column featuring some of the letters she received. As FWD readers know, I am not a fan of the euphemism ‘special‘ and I dislike labeling basic needs as such. However, it’s very common, so I pretty much expected a thicket of ‘special’ this and ‘special’ that in Abby’s column. But I also expected at least one letter from a person with a disability, because Abby has run letters from us in the past on topics relating to disability issues.

Were my expectations met? No, they were not. The title of the column is ‘Special-needs kids build bridges of understanding.’ Three of the five letters were from mothers of children with disabilities and they all pretty much said that we have a responsibility to educate people staring at us:

…I now regard it as an opportunity to educate them about autism. I hand them a card explaining it that contains a link to the Autism Society of America.

This tactic, rather than ignoring people, is the way to go. If more people educated others, the stares and rude comments would become smiles and support.

One letter, well, here, I’ll give you the first paragraph:

I worked with special-needs children for a number of years. I actually believe that it is good when people stare. It gives us a chance to help the child learn social skills.

And finally…

I’m one of those folks who “stare” at others. By no means is there ever a bad intent. I’m a people-watcher. I love watching people communicate in different ways, like signing. Whether someone is in a wheelchair or has a visible disability, I value each and every person.

Maybe “Boiling Mad” doesn’t understand that many of us are willing to reach out, lend a hand or just be friendly. I wish to embrace, not ignore, and I hope my behavior isn’t perceived to be offensive.

So, we heard from parents. We heard from people who are a fan, evidently, of the ‘tough love’ school of thought; staring makes you stronger! And we heard from someone who likes to stare at people.

We did not hear from anyone who gets stared at. Ouyang Dan, writing about a different advice column involving the nondisabled gaze and what to do about it, pointed out:

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them.

Abby’s decision not to represent any people with disabilities in her column is noted. I’m willing to bet that some people with disabilities wrote in about how much they do  not like being stared at, to point out that when everyone is staring at you, it is most definitely perceived as offensive. It’s not ’embracing’ at all to feel like you can’t go to the grocery store, ride a horse, sit in the library, or do any number of other things without people gawking at you. Being stared at is not fun.

It is also not an opportunity for a teachable moment. People going about their daily business are not diversity educators. They are human beings, doing human things, and just wanting to get those things done. Having to question whether or not you want to go out on any given day because you don’t feel up to dealing with stares is not enjoyable.

I don’t know how to deal with staring. I get stared at a lot and it upsets me. Ignoring people doesn’t quite seem to work. Staring back sometimes shames them into looking away, by reflecting their gaze back on them and forcing them to consider how it feels to be stared at, but I really have a hard time with eye contact and often staring back at people forces me to meet their eyes. Sometimes I say something like ‘pardon me, is there something on my…’ and then they mumble and look away. But I definitely do not feel like it’s my responsibility to educate people when I’m going to the post office or having dinner with friends. They can go educate themselves. Or they can pay to take a workshop where I would be more than happy to educate them in a structured classroom environment.

We also have the right to be in public

This is a guest post from Thetroubleis, a knitting, writing, dog training, queer uppity negress who enjoys writing about race, madness, disability, adoption and the intersections of the aforementioned subjects. She is a big geek who spends good deal of time raging against fandom and canon underrepresented of marginalized people and squeeing about new episodes. You can find her writing at The Trouble Is…

I’m disabled. I do weird things that bother other people. I have trouble controlling the volume of my voice and I use a service dog. I’m easily distracted and have a tendency to become very intensely focused on one thing. I hate certain buildings and noises, they make me want to crawl out of my skin or scream until it stops. I can’t tell you why they’re wrong, but I simply know they are. Sometimes, fear sinks its claws into me and doesn’t let go until its had its merry way.

These things bother abled people quite a bit. Ever since childhood, I’ve been judged for not preforming humanity correctly, as anyone who wants the basic decency afforded a real person should. Reading at the dinning table to avoid a freakout is disrespectful. Refusing to look people in the eye must mean I’m hiding something. Making my mom order for me because I couldn’t stand to talk to strangers was freaky and just not right. It cannot be allowed stand and thus, I had to be molded, to become more normal. The discomfort of others with my natural state was always more important than anything I could need.

I preform better now. Most people can’t tell I’m not neurotypical anymore, unless I’m having a panic attack or am in the arms of mania. I haven’t had a screaming fit in public in years and I walk up stairs normally now. Yet, I’m still off. Even the things I do to cope, so I won’t behave in a manner that will end with me being locked back up, are judged far too often.

This is ableism.

Knitting through stressful situations, or to keep focused, seems to really bother abled people and non-knitters. Out of courtesy to other people with attention problems, I even try to use quiet needles and keep my knitting under a desk if I’m sitting at one. Yet, every time I’ve been scolded for not paying attention, I’m simply told I’m being distracting, without any understanding that I’d be willing to work around other people’s needs. Often I’m pretty sure I’m not being scolded for being distracting, but for the possibility of it. Because what I need to do to get by is weird, so of course it’s my fault when people gawk.

I have a service dog, in training. His name is Figaro and he’s the best thing that has ever happened to me. The general public is not so sold on him. Every time we go out, snarky comments start up and I live in area that’s pretty service dog friendly, thanks to the efforts of our program and other handlers. This behavior isn’t even coming from gatekeepers, but from people who seem generally angry if they see Figaro. Admittedly, he’s not perfect, but his worst behavior is slipping out of a heel or popping up from a down. The act of him simply lying under a table while I eat seems to be an affront to the proper way of doing things.

These are just stories from my life. Other people with disabilities deal with other situations, some much, much worse than mine. Policing of behavior is a chronic thing for many PWDs, regardless of the actual effect of their behavior of other people. The abled community has its standards to uphold and some girl having her dog lay on her to calm her down is too weird to let stand. People end up locked up because of these standards. People end up dead. We end up cut off from any real support any coping methods we may have had, all in guise of conformity.

One would think feminists, who I hear aren’t too keen on the policing of womens’ behavior, would see the parallels in policing the behavior of other marginalized people. Really, truth be told, the feminist movement has never been very good at being inclusive, at understanding intersecting oppressions. Therefore, I’m not very surprised, just further disappointed. This happens time and time again in various movements sold as progressive.

All people, have the right to public spaces, even people who annoy you. Sometimes, because of conflicting access needs, compromises need to be made, but shunning people who don’t preform correctly isn’t compromise. It’s just more of the same bigotry. We no longer have ugly laws but people still attempt to enforce the spirit of them. Ableism isn’t feminism, so if you’re abled, actually listening to PWDs? It’s a capital idea.

ADAPT Protests partially lock-down White House! Media Yawns, Changes Subject

I spent most of my weekend pretty much glued to Twitter following ADAPT’s latest action in Washington, DC and wondering where the media was, especially after a huge group of wheelchair users blockaded one of the White House gates and 16 people were arrested. I actually thought that the White House security arresting a group of people with disabilities would surely be the sort of thing that the media would pick up on.

Foolish me! Just like with the Arnieville protests that s.e. wrote about last week, the media is basically ignoring this four-day-long protest in Washington in favour of more important things. Despite repeated hunts by me and several other people, the only mention of the protest, “partial White House lockdown”, arrests, and march is this CNN report, which only quotes White House staff and the ADAPT webpage. Apparently CNN couldn’t even find someone from ADAPT to quote directly. (Also, the photos of the event that ADAPT have posted make it clear that CNN’s report is factually inaccurate.)

[If you would like to read NationalADAPT’s tweets, a good place to start is their September 18th tweet, and just keep going from there. Their timeline includes a variety of photos taken of the event, and also will point you towards other tweeters that were there.]

ADAPT has been protesting at the White House at least once a year (sometimes twice a year) since 1997, and has been holding protests in other cities across the US for 25 years. The focus of their protests for the last 11 years has been the Olmstead Decision and the Community Choice Act.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent.

On Sunday, ADAPT held a funeral, complete with casket, to both mourn and bring attention to the number of people with disabilities who have died in nursing homes around the country while fighting to get out of them. Monday involved marching directly on the White House. While CNN reports that 9 people handcuffed themselves to the White House gates, the ADAPT photos and Reports make it clear that far more than 9 people were involved in this action.

The Park Police had closed the sidewalk and street in front of the White House around 10 in the morning as ADAPT approached. When the police used an SUV to block ADAPT and the sidewalk, the bulk of ADAPT charged into the intersection of 15th and G Streets stopping traffic completely. The police had believed they had successfully stopped the line of activists when suddenly all the traffic was stopped and the intersection was packed with activists.

“The people they thought were meek or expendable,” said Jennifer McPhail about the police force, “were the people who had taken their power.”

While ADAPT’s actions continue today across Washington, DC, members who are required to attend court this morning after being arrested have been illegally challenged at the court to produce documentation for their service animals, and need to bring attention to ADA violations to the very people one would expect to be enforcing the ADA.

When a local Washington paper was challenged on their decision not to report anything about the ADAPT protests, their response was first that they don’t cover national protests and then, when it was pointed out this was also a local protest, that it was a matter of debate, and there were protests every day in DC. Other media sources haven’t responded to questions about their lack of coverage.

I do understand this, to a point. Certainly I’ve attended protests that have received very little media coverage, and most of that in either local papers or in grass roots news organizations. However, at what point do we start to seriously question why multi-day – or, in the case of Arnieville, multi-week – protests by people with disabilities are getting ignored? The ADAPT actions have decades of history, and touch on issues that are hot-button topics in the US right now, such as health care, funding for social programs, and the standard of living.

And yet, still, despite everything: we protest, and are ignored.

Reactions, part two: Social aspects

In my last post, I talked about the painful physical process of the near-fatal allergic reactions that I’ve been having since the age of 14. In this post, I want to address the aspect of these “attacks” that is, in some ways, crappier than the actual attacks: peoples’ reactions.

Often when I mention that I am allergic to certain foods — when I am, for example, meeting people for the first time in a situation where there is food, and where these issues may come up — I do not mention that my allergies are potentially life-threatening, as I’ve learned my lesson from some of the past responses of certain acquaintances:

“So you could die from eating peanuts? I’ve never heard of that.”

“I knew this kid who was allergic to [food], and he almost died.”

“Whoa, if I couldn’t have [food], I would, like, die/miss it soooooo much. Do you miss [food]?”

“Peanut allergies are so over-diagnosed! Parents these days are way too overprotective of their kids.” (Hilariously enough, this one gets trotted out in regards to some other disabilities/health conditions as well.)

“Are you sure you’re allergic? It could have just been a one-time thing.”

“How much of [food] could you eat before you’d have to go to the hospital?”

It could be that some of these folks are just trying to make conversation (particularly in the second and very last examples), but most of these responses have left me either totally baffled or itching to make some sort of snappy comeback. Because I am a fairly polite person in my day-to-day life (no, really!), the times that I have made snarky comments in response have been relatively few. While the disability activist part of me firmly believes that I have zero imperative to politely respond to cluelessness about something that could kill me (and almost has), my own social programming tends to stop me from doing or saying anything rash. The thing I resent, though, is that sometimes I am treated like a human “learning experience” of sorts — some people, once they find out about this health condition of mine, become convinced that they can bounce their conspiracy theories about how all peanut allergies are caused by anxious parents off of me, or delight me with anecdotes about this kid they know who was allergic to, like, everything and was in the hospital for a month this one time. Or perhaps they get really bad hay fever in the springtime, and they are just so excited to find someone who knows how annoying and awful allergies can be!

Somewhat ironically, the most heinous unsolicited comment on my reactions that I ever got was from a friend of my mom’s, who had known my family for a very long time. This woman was of the ardently “spiritual” sort — this is not, in itself, a bad thing, but in her case, parts of it happened to translate into a long-standing belief in the universal applicability of “alternative” medicine and mind-body integrative healing. One afternoon, this person phoned my mom in an utter panic, convinced that she knew the reason for my scary and bewildering allergy attacks. She had a piece of proof that no medical science person could possibly have:

“Anna is faking her allergy attacks to manipulate and control you!”

This is not something that anyone, particularly an already-frightened 16 year-old who has no idea why she still gets these attacks spontaneously, should have to hear. My mom, to her credit, excused herself from the conversation with this person, and then told me about what had happened — adding that should this person call back, I did not have to speak to her if I did not want to. (Which I did not, for the record.)

In that interaction lies one of the most crucial issues regarding the way many people with disabilities are treated: Those of us with potentially life-threatening health conditions are never to be trusted. Those of us with chronic health conditions are never to be trusted. Those of us with disabilities must be faking it to get attention, to gain the upper hand in whatever way we can. We must be using our conditions as excuses to get pity from those close to us, or from anyone, really. We must be faking — things can’t really be that bad. That dire. That frightening to us and those who are close to us. Those of us without “objective” proof are constantly suspect, constantly under scrutiny from nondisabled people (at times, even from other people with disabilities); a similar process is at work even for those who do have “objective,” concrete proof of their disabilities or conditions. Are you sure you’re allergic? You could eat peanuts if you really wanted to, right? She’s just acting like that for attention. She’s just using it as a get-out-of-[whatever]-free card. Well, I’VE never heard of that! Are you sure it’s not just psychological? I knew this one guy. . .

That burden of proof has always been on those of us with disabilities and/or health conditions. And sometimes, it’s a burden that feels almost unbearably heavy. No matter how scary the condition you deal with can be, someone always has a question about it, or a theory, or wants to try a misguided attempt at solidarity. Well, you may be thinking, would you rather not have people react at all, since you’re complaining about it so much?

What I would rather have happen is for people who do not have my condition or similar health problems to recognize that, for once, they may not be the experts on something that they have never experienced, or that I do not have any sort of “ulterior motive” simply by having a health condition that just happened to come out of nowhere, or that I may have heard the “do you miss eating [food]?” question countless times. Or that I have a lived experience that is just that — my experience — and that it is different from theirs. For me, simply having that be okay — in other words, not subject to constant monitoring, anecdotes, questions, guessing at motives, trying to find “common ground” based on a pretty uncommon issue  — would be enough.

Things That Make Me Go Hmmmm: Psychiatry-themed Plush Toys

In Germany, the toymaker Paraplush has evidently just released a line of psychiatry-themed plush toys. Each comes ‘packaged with a personalized medical history and treatment plan.’ They’re tied in with an online game made by the same company (warning, Flash, autoplay). Like, for example, Kroko the crocodile:

A closeup of the head of a stuffed crocodile, clinging to a pillow.

Kroko here ‘needs your help!’ His ‘patient profile‘ tells us:

The patient’s hypersensitive hallucinatory perception is a symptom of a paranoid psychosis. The signs are a mental block and a Gestaltzerfall (disintegration of structure) of the habitual field of experience. The consequence is a compensational reactivation of archaic reaction patterns.

The idea behind the toys, according to the creators, is that ‘Children and grown-ups like their [the plush toys’] vulnerability and find something in them that gives them a great sense of comfort in helping to heal them.’

I am reminded of the giant plush microbes I buy for my cats to play with. They experience a great sense of comfort in shredding ebola.

There are a couple of things going on here that I find troubling. I am, in general, not a fan of the cuteification of disability issues, and thus, plush representations of mental health conditions presented as an educational tool bother me. This is just a personal reaction; I know that other people may well feel differently, and I admit that a part of me is kind of bemused by the idea of buying a plush representation of one of my disabilities.

I think there’s also an argument to be made, though, that some people might find these toys beneficial (or just funny in a reclamatory way), and might enjoy subverting the ‘patient profiles’ and ‘treatment plans’ or even writing up treatment plans of their own as a way of reclaiming and owning their own experiences with the mental health establishment. Indeed, I wonder how my perception of these toys would change if they were being produced by and for people with disabilities with the specific goal of empowerment.

I am also really bothered by the reinforcement of psychiatrisation going on with these toys; there’s one toy labeled as having ‘multiple personality disorder,’ for example, whom we are informed is ‘unable to accept herself,’ stressing that the conclusion we are supposed to draw from the patient’s history is that she needs to be ‘fixed’ through integration. Likewise, I assume most of the treatment plans are predicated on the idea of mental illness as something that needs to be controlled, probably with the use of medication. I suspect that other approaches/perspectives/experiences are probably not included in patient profiles and treatment plans.

And, of course, the company’s store is labeled ‘The Asylum: Psychiatric Clinic for Abused Cuddlytoys,’ which…could we not make ‘asylums’ cutesy and funny, please, given that people are forcibly institutionalised to this day in facilities where abuse really does happen? Sometimes really horrific abuse?

What about you? How do you feel about this line of toys? Do you think the context, of who is making them, for whom, and with what intent, is important to consider?

Today In Journalism: Autistic Adults Need Not Comment

I was browsing the New York Times Magazine online this morning when I saw a story in the sidebar, ‘When Autistic Children Become Adults,’ from the Motherlode blog. Hmmm, I thought. This might be interesting.

The article opens with a discussion of the rise in autism diagnoses over the last half of the 20th century, and points out that growing numbers of people diagnosed with autism as children are growing into adulthood, with an estimated 88,000 autistic adults in the US today and numbers that will only grow larger in the coming decades. All well and good, an interesting thing to talk about, but the sole focus of the article is on parents of autistic people.

What to do for the wave of children with autism when they grow into adults? There are an estimated 88,000 such adults today, and their parents all face the anxiety that hundreds of thousands more parents will confront in coming years.

Ah, yes, the parents. Yes, by all means, let’s focus on the ‘anxiety’ of the parents, because that is the important thing here; let’s not talk, for example, about the pressure to institutionalise autistic adults and what that means for actual autistic adults, no, let’s focus on what that means for the parents. Let’s not talk about lack of social equality for people with disabilities in general, about ableism and discrimination, about why it is that parents and caregivers are taken as authorities on disability over actual people with disabilities. Let’s not talk about the very real fears that people with autism have about being institutionalised and abused. The story links to a longer piece discussing the growing numbers of autistic adults, and again focusing on what parents are supposed to do, and concludes:

Then, those of you who are struggling with this question in your own life, please use the comments to discuss your plans and fears for your children — and let us know how the rest of us can “actively root” for them as they navigate the future.

Notice anyone missing from this statement? I sure did.

Despite discussing the fact that there are autistic adults right now, their opinions were not solicited, and parents were invited to tell readers how to support adults with autism. Parents. Not autistic adults. I guess we would have nothing of interest or relevance to say, eh? In the comments, which I do not recommend, an autistic adults did speak up, but not to challenge the narrative put forward in the article, that parents, rather than actual people with autism, should be the trustworthy sources of information on this issue.

Anna’s written here about self-appointed ‘advocates’ speaking for people with autism and all the problems embedded in that. This is a serious issue for many people with disabilities, but with autism, it is perhaps most stark, and most striking. We have major autism organisations without a single person with autism on their boards. Run entirely by parents, and sometimes actively rejecting input and requests for discussion from autistic people.

Of course, the comments exploded with a furor of ridiculousness as people demonstrated their ignorance about the deinstitutionalisation movement and other topics. Rank hatred oozed out of many of the comments, and if autistic adults hadn’t already been basically excluded already, they certainly wouldn’t have wanted to join in the conversation after scrolling through the comments to get to the submission box. The article made it crystal clear that commentary from us wasn’t deemed necessary or desirable, as did the comments.

It’s natural and understandable for parents to be concerned about the welfare of their children, and parents fighting hard to keep their children out of institutions and abusive situations most definitely have reason to be worried about what will happen when they die. I’m not saying parents don’t matter, but I am saying that it is not appropriate to position them as authorities over actual people with autism, including their own children. I am saying that people without autism should not be spokespeople for people with autism, that any conversation about ‘what to do with autistic adults’ should include autistic adults.

Yes, I would expect a parenting blog to focus on parenting, but an important part of parenting, to my understanding, seems to be supporting autonomy and self determination for your children, allowing them to speak for themselves, allowing them to become fully integrated members of society. This is most definitely an issue of relevance to parents, and part of parenting is knowing when to speak, and when to listen. It’s time to listen to people with autism, not their parents, and that includes autistic parents who may have some insightful input into this discussion; the underlying assumption in this article is that no parents have autism, and that is demonstrably untrue.

We want to talk about how to ‘support’ autistic adults? How about asking actual people with autism for their opinion on the matter instead of hosting free-for alls filled with ignorance and hatred in the comment sections of major newspapers?