Category Archives: blaming
My beginning is like this: I was born a full three months before my expected arrival.
I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.
The hemorrhage stopped on its own. No one could figure out why.
I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.
My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.
There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.
But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.
Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.
For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.
Yes, you read that title right.
Back in January, Evelyn Towry, an autistic third grader living in Idaho, just wanted to wear her cow hoodie1 and go to a birthday party and eat cake with her fellow students. Her teacher decided, for reasons that remain nebulous, that Evelyn wouldn’t be allowed to go until she took off her hoodie. Evelyn didn’t want to, so her teacher left her in a classroom with two staffers to guard her. She decided she wanted to leave, and a ‘scuffle’ ensued when the staffers tried to restrain her.
It ended with Evelyn’s arrest. For battery. The school claims that she ‘inappropriately touched’ the staff members who attempted to prevent her from leaving the classroom. Now, Evelyn and her parents are suing the school and the sheriff’s department. The suit is using the Americans With Disabilities Act (ADA) as grounds, arguing that the school denied accommodations for Evelyn.
Just for reference, here is the dreaded cow hoodie:
(Image via Popehat)
Clearly a menace to public decency and birthday cakes everywhere!
I am trying to imagine, here, on what planet an eight year old girl could reasonably be arrested for battery. This case is a pretty classic example of a situation where people obviously lacked adequate training and compassion, and a little girl suffered for it. I have no idea why the teacher felt so strongly about Evelyn’s hoodie, but I see no reason that she should have been barred from going to a birthday party simply because she wanted to keep her jacket on. If there had been a situation where it was appropriate to separate her from her fellow students and make her wait in a classroom with school staff members, surely those staff members should have been provided with the training to sit in the classroom with her without ending up in a physical altercation; Evelyn may have had a meltdown, may well have been ‘flailing,’ but to say that she was ‘inappropriately touching’ staff members stretches the boundaries of believability.
And the sheriff’s department most certainly should not have taken Evelyn into custody when they responded to the school’s call. They should have politely informed the school that taking terrified children to the police station is not within their job description, and that the school should call her parents, if anyone, to address the issue.
Spring Towry said she got to the school Friday just in time to see 54-pound Evelyn — who was diagnosed at age 5 with Asperger’s Syndrome, a high functioning form of autism2 — being walked to a police car with two officers at her side.
“She started screaming ‘Mommy, I don’t want to go! What are batteries? What are batteries?'” Towry said. “She didn’t even know what she was arrested for.” (source)
Being taken into police custody is traumatic enough when you do understand what is going on. I can’t even imagine what it would be like for Evelyn, who was probably off balance and upset already because her routines were disturbed. The prosecutor put the kibosh on the case, so Evelyn won’t be going to court to answer these utterly absurd charges, but what if the prosecutor had suspended all rational thought and gone ahead with it? Can you imagine her in court, responding to these charges? Perhaps the prosecutor would have offered a plea deal.
I have said it before, and I will keep saying it:
Teachers who have received no training in working with disabled students shouldn’t be assigned to classrooms with disabled students, yet they are.
It’s notable that the staff members restrained Evelyn hard enough to leave bruises and yet they are not being charged with battery.
ETA: After this post went up, The Seattle Times published an article indicating that Evelyn Towry’s individual education plan (IEP), in addition to being drafted without input from her or her family, ‘included police intervention as a course of action if the child misbehaved.’
Maz Smyth was rolling along one day in her manual wheelchair, as one does, when her front wheel got caught in a pothole and snapped off. Understandably annoyed by this turn of events, she approached the Toowoomba Regional Council to ask them to fix the pothole and pay the costs associated with fixing her chair.
Neither of these things is particularly unreasonable, wouldn’t you agree? It’s pretty standard for local government to maintain roads, and when I discussed this case with Lauredhel, she pointed out that most councils pay medical expenses when things like this happen, and that awareness of how potholes and other hazards contribute to injuries is on the radar in many regions of Australia. The Council failed to maintain the roadway properly and her chair was damaged as a result. She could have been seriously injured, just as any other wheelchair user, or someone who uses a cane or walker, could have been injured. Potholes are things that need to be fixed, and since the Council failed to take timely action to fix the pothole before someone was injured and/or property damage occurred, Smyth was, I believe, justified in requesting that they pay to repair her chair.
She went to the Council every day for a week, asking that they pay the costs of the repairs. They informed her that she needed to file an official claim and it probably wouldn’t be honoured. She demanded to talk to the Mayor. And then this happened:
[she was] told by a council staff member “perhaps it was your weight that caused the wheelchair to break”.
There are a whole lot of attitudes about fat wheelchair users that get reinforced on a pretty regular basis, like that fat people are lazy, or that using a wheelchair makes you fat. I wish I didn’t encounter them all the time, but I do, and this case was just another instance of casual fat hatred combined with ableism. Wanting to disavow responsibility for damages caused by inaction, the Council staff member decided that the best way to get rid of the Angry Crip would be to tell her that she’s clearly ‘too fat’ and what happened was her fault.
These attitudes are dehumanising, and it comes as no surprise to me to read that Smyth felt ‘downtrodden’ when someone told her this. It was yet another reminder that fat people and wheelchair users don’t belong in society, shouldn’t have equal rights to access public spaces, and should just stay at home and feel sorry for themselves.
A local paper, The Chronicle, decided to cover her story. While they were doing a photoshoot in front of City Hall, the Mayor evidently saw them, raced out of the building, and agreed to pay for the repairs. He said:
“I’m not sure how (the wheelchair was damaged) but we’ve had it fixed to help her out.”
Yeah. She told them how the wheelchair was damaged: She was using it to navigate the street, there was a pothole in the street, and her wheel snapped off. It wasn’t until the presence of the media shamed the Mayor that he decided to take action, and this is something I see with a lot of other cases of discrimination.
A solo voice can be easily ignored. A thousand tiny cuts like this happen all over the world every day and we never find out about them, because a single person usually cannot raise enough of a ruckus. It isn’t until a larger entity like the media, a disability rights organisation, or a famous person steps in that action is taken. Even here, the Mayor didn’t acknowledge her humanity or her right to access. He made it seem like she was getting a favour by having her chair fixed.
Commenters on the article noted that accessibility issues are actually a chronic problem, that there are a number of streets and paths with potholes and other obstacles. Clearly, access has not been made a priority, as illustrated by the fact that while Smyth’s chair was fixed, the pothole was not. The problem here is being treated as individual, rather than structural, and people will continue to experience accessibility problems as a result.
This case could have been treated as an opportunity to hold an accessibility review, to evaluate the town to see how safe and accessible it is, but instead it was treated as yet another opportunity to tell a fat, disabled woman that she didn’t belong in public.
Note: This post was written primarily with nondisabled readers in mind.
Cure evangelism is a scourge which seems unlikely to vanish any time soon, so we may as well address it and have a little chat about what it is, why it is problematic, and what you, personally, can do about it. This is not just a problem which affects people with disabilities. Fat folks are often subjected to a form of cure evangelism from people who believe that fat is something which needs to be (and can be) cured, for example, and anyone who has ever experienced temporary disability or illness can probably think of a few examples of cure evangelism which they have experienced.
What is cure evangelism?
Put simply, cure evangelism involves aggressively pushing a medical treatment or approach to a medical condition or disability on someone, without that person’s consent, interest, or desire. It takes a lot of different forms; the pregnant woman who is informed that she must have a natural birth and that if she thinks positive enough, it will happen; the cancer patient who is informed that ‘this great herbal supplement’ worked really well for the evangelist’s friend; the asthma patient controlling asthma with acupuncture who is constantly told to start using inhalers; the person with mental illness who is shamed for not taking medications.
In all of these cases, the cure evangelist identifies that someone has a medical issue, the evangelist has an opinion on how to treat that medical issue, and ou feels entitled to share it. Cure evangelism comes from all kinds of people, including people who have shared that experience and people who have not shared that experience. It all boils down to ‘there’s only one way to handle this situation, and that’s my way.’
Cure evangelism presupposes, of course, that only one treatment for something would be appropriate or necessary. It presupposes that all bodies and issues are identical, which means that experiences can easily be overlaid on each other: ‘if I have asthma, everyone must have asthma like mine.’ At its core, it is about assuming that other people’s bodies belong to us, are subject to our control, and are our business. Indeed, that we have a moral obligation to interfere with what other people do with their bodies. To save them from themselves.
Why is it problematic?
I think that the problematic nature of cure evangelism is multifaceted. There are the issues of bodily autonomy which I covered in the above paragraph, which become especially complicated for women, trans* folks, people of colour, and people with disabilities. Members of all of these groups have historically been treated like property and in some cases are still considered property. And I’m not even talking about the metaphorical sense in this particular case.
When you have been exposed to a culture which regards you as a publicly tradeable commodity, exercising control and autonomy become especially paramount. Being able to make decisions for yourself and your own body without the approval or consent of others is part of taking control of yourself and your identity. Thus, when people in these groups are informed that they must do something, it comes from a very entrenched culture of ownership. The person speaking often has privilege, and is exercising that privilege thoughtlessly. Many people claim to be well meaning, say that they just want people to be informed, but this presupposes that people are not informed on their own and that, moreover, it is only possible to reach one informed choice.
Another facet of cure evangelism is that it is, quite frankly, annoying. People present these things as though they are new and different and no one has ever brought them up before when in fact nothing could be further from the truth. Every single time someone approaches me with a new act of cure evangelism, it’s always to tell me about something which I am already well aware of. In some cases, it might be something I am already doing. Or something which I did which did not work. Or something which I explored but decided was not for me.
When a cure evangelist is cornering me and telling me to do this or that, it puts me in a bad place. Rejection is taken as rude, so I can’t just get out of the conversation. I don’t really feel like discussing my body with other people, let alone how I take care of it, and I’m not really interested in saying ‘yes, I’m actually already doing that’ or discussing any aspect of my treatment plans with someone who is not part of my treatment. It’s a personal matter.
What you, personally, can do about it.
Don’t do it.
It’s that simple. If someone chooses to share the fact that ou is disabled, or sick, or temporarily injured with you, don’t evangelise. Now, if someone explicitly asks you for advice and suggestions, by all means, do so. But don’t do it in a pushy way. Make it clear that these are things you know from your own experience, but that mileage may vary.
When someone chooses to talk to you about ou treatment, listen. Don’t comment. Don’t judge. If that person is doing something which you disagree with, remember that it’s about ou body and ou choices. Imposing your values accomplishes nothing. If someone asks for your opinion, offer it. But, again, don’t be pushy about it. People are engaging in an act of faith and trust when they share that with you; don’t violate that.
If you feel that you have information which is simply critical, instead of volunteering it, say that you have information/advice and it’s available if that person is interested. If that person says no, respect that.
And when people are having conversations in their own community; as for example when people with disabilities are having an open thread about an issue which pertains to them, don’t butt in if you aren’t part of that community. Feel free to watch and take information away, but don’t add your two cents. The people in that conversation don’t want to hear about your relative/friend. They are talking about their experiences.
And, let me tell you, when a friend who shares a disability with me says ‘hey, guess what,’ I listen and pay attention, because it is offered respectfully and with love and from a place of shared experience. And sometimes I say things like ‘hey, I am thinking about changing medications, does anyone have experience with [medication]?’ and people who actually have experience talk to me, and I learn things, and it is good. These situations are not cure evangelism, though. They are about connecting in a place of shared experience and sharing mutually beneficial information.
Quick Hit: The Relationship Between Disability and Poverty, Part 1,293,495,594 in a continuing series
Did you know that being poor puts people at greater risk for disability? And that people with disabilities are more likely to be poor? And that there’s a very strong relationship between poverty and disability, the worst kind of vicious circle? Well, you probably do, especially because we talk about it a lot here, but here’s another study confirming that, from Wayne State University (bolding mine):
Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.
With much of the available literature on disability focused on the role of mid-life diseases, Dr. Bowen and Dr. Gonzalez took a unique life-course approach to the topic. “This study set out to determine if early life conditions contribute to the risk for developing a disability, and if so, what those risk factors are,” Dr. Gonzalez said.
The study utilized data from the Health and Retirement Study, a nationally representative study that followed more than 18,000 Americans 51 and older over the course of eight years. Using generalized linear latent and mixed-model commands for their statistical analysis, they examined the early-life parameters of parental education ranging from zero to 17 years, as well as the father’s occupation when the respondent was 16 years old. They factored in respondents’ social mobility — education, income and wealth — and health behaviors like smoking, drinking, exercising and body weight, throughout their lives, examining whether these factors mediated the effect of early life conditions. Analyses adjusted for the predisposition for certain forms of disability caused by characteristics such as age, gender, ethnicity and disease, and tracked the changes from baseline measurements over the course of the study.
Dr. Bowen and Dr. Gonzalez said the study suggests that early socioeconomic conditions play a role in a person’s risk for disability that persists throughout the course of their life.
“Our research strengthens the argument that poor conditions during childhood can put you on a path of heightened risk for health problems,” said Dr. Bowen, now a patient-safety research fellow at James A. Haley Veterans Hospital in Tampa, Fla. “This isn’t to say that people who grow up with certain socioeconomic risk factors are going to be disabled, but it does provide evidence they will be at a disadvantage. This is most likely due to the lowered access to good nutrition and to important health information characteristic of people living in poverty.”
(Note: I can’t say I care for the implication that this is an education issue, which implies that it’s caused by volitional choices of people in poverty. I think it’s much more accurate to look at the constellation of socioeconomic factors which are strong determinants of health outcomes – stables and habitable affordable housing, financial and locational access to nutrition, and health care access – all of which are systemic issues, rather than individual actions. But the overall conclusions are, well, exactly what we already knew.)