Transcription with description follows.
[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]
I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.
Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.
The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.
My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.
When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.” The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.
Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.
The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.
And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.
For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).
A reader wrote in to ‘Since you asked…’ on Salon last month about her 90 year old mother; I’m going to summarise her letter, because it’s a bit long. The letter writer’s mother has some health conditions and is living independently with a little bit of assistance from the family, but has recently been diagnosed with a new medical issue. A specialist wants the mother to undergo some testing to learn more, and the mother wants to decline because it would be invasive and uncomfortable. Letter writer supports her mother’s choice and doesn’t want to pressure her into getting tests she does not want, but her brother, who lives far away and doesn’t spend much time with his mother, doesn’t. The letter writer asks ‘am I doing the right thing?’
This is a problem that comes up quite frequently. There’s an idea that people deserve autonomy…up to a certain point, and then the people around them should make decisions for them. There’s also an idea that people who are capable of making decisions for themselves should be pressured if the people around them think they are the ‘wrong’ decisions. Reading between the lines of the letter, it’s clear to me that the mother is making an informed choice and she has solid reasons for it. In my opinion, her daughter is doing the right thing: She’s respecting the choices her mother wants to make for her medical care.
Dear Concerned Daughter,
Yes, I think you are doing the right thing. Your mom has the right to make her own decisions.
There may be room for compromise. It would be nice to know more about what this new serious condition is. It may be that in two or three weeks, or a couple of months, things will change. But your mother has the right to decide how much poking and prodding from doctors she will endure.
What do you say to your brother? Well, I would say two things. I would say, Let’s just wait and see; maybe she will change her mind, and maybe the situation will become clearer. And I would also say, Why don’t you come here now and spend some time with her?
She doesn’t have forever. This opportunity to be with her will not return. Now is the best time there is. He should come and spend some time with her. That’s what I would say to him.
It’s not right to force people to undergo medical procedures they don’t want to undergo. As long as people can understand the risks, they are free to refuse. (emphasis mine)
His response makes a number of key points. The most important is stated right at the top, which is critical. I like that he also notes that declining testing now doesn’t spell the end of the road or close any doors; if the mother later decides she does want testing or wants to explore options, she can. And while he notes ‘maybe she will change her mind,’ he does not suggest that she should be pressured and forced into doing so. Overall, the letter emphasises respect for the mother’s autonomy, which is a rare thing to see when it comes to talking about how people interact with older adults.
And I think the advice about what to say to the brother is very sound. Reading the original letter, I wondered if the brother was pressuring for more testing because he feels bad about not being more directly involved and believes that testing will buy his mother more time. It is very difficult to be living in a distant location while an older family member is not doing well; it can create feelings of frustration and helplessness and guilt, because you want to be more involved but you are unable to be.
If he can make arrangements to do so, making a visit to spend some time with his mother might be a good idea, not least because he will have an opportunity to interact with her and see that she is making an informed choice about her medical care. That might not be an option for him; we don’t know the circumstances, but the brother needs to separate out his feelings in this case, because his mother deserves autonomy, and should be supported in her decisionmaking.
When I first saw this post on the ACLU’s blog about solitary confinement for juvenile girls in criminal detention, I was so horrified that I opened it in a tab and then couldn’t look at it again for several days. When I read through the entire post, I cried. I believe that when the United States takes control of a person, whether in criminal or immigration detention, they take on an obligation to care for that person, or at least not put them in mortal danger. And that is simply not happening. On the contrary, the solitary confinement policies seem to target girls with existing trauma and/or mental health histories for further isolation and victimization.
[Trigger warnings for sexual assault and abuse based on disability.]
In June 2008, the ACLU filed a class action lawsuit challenging inhumane practices at the Brownwood State School, a youth prison in central Texas. Girls at Brownwood are regularly placed in punitive solitary confinement in oppressively cold, concrete cells, that are empty except for a metal slab intended to be used as a bed. Solitary confinement is imposed for minor misbehavior, for self-harm or for expressing a desire to commit self-harm, and can be brief or can last for days, weeks and even months. It’s hard to imagine a more destructive reaction to a child in crisis, but it’s the norm. Unfortunately, these practices are not limited to Brownwood, or Texas, for that matter.
There are currently more than 14,000 girls incarcerated in the United States, a number that has been rapidly increasing in recent decades. Most of these girls are arrested for minor, nonviolent offenses and probation violations. Locked up under the guise of rehabilitation, girls nationwide — the vast majority of whom have been sexually/physically abused — are subjected to punitive solitary confinement, routine strip searches, and other forms of abuse. Meanwhile, they are denied the essential mental health care, education, and social services they need. Far from helping girls cope with the trauma they have suffered, youth prisons’ use of solitary confinement only retraumatizes them and further impedes their rehabilitation.
This is abundantly clear in a recent collection of testimonies from girls imprisoned in Texas juvenile institutions printed by Harper’s magazine this week. On newsstands today, the May 2010 issue features excerpts from ACLU interviews with incarcerated teenage girls. A few noteworthy excerpts include a girl who states that her crying is treated as “problem behavior,” another who was locked in a solitary confinement cell surrounded by her own vomit for over 24 hours, and perhaps even more disturbing, the following testimony from a girl in solitary confinement:
“A staff [member] gave me a pill, and he told me he was going to take me to get my meds. We ended up in this dirty room. It had pipes, buckets—it was dusty, it was nasty. I was like, I want to go to sleep, and he was like, You’re not leaving until we have sex. I didn’t know what to do. I didn’t know to scream, I didn’t know to do none of that stuff. I told him I wasn’t going to lie on that dirty floor, and he was like, Well, just bend over, and so—I didn’t know what he was going to do to me. I don’t know if he could’ve killed me and it would’ve been on the news: We just found a dead teenager at TYC and nobody knows what happened.— 17-year-old, Marlin Orientation and Assessment Unit
Recently, I read this odd article, penned by Judith Warner, in the New York Times–one in a stream of many that detail how excessively awful the current generation of young people (read: young workers) is at putting its collective nose to the grindstone, sucking it up, and generally not acting like a bunch of brats, or something.
Many of us have heard about, or come into contact with, some of these bright young things. They are heralded — or, more commonly, blasted — as naive, entitled, too optimistic, and over-confident. In many of these articles, their numerous faults are listed: They don’t know how to dress professionally! They expect to march into the workplace of their choice and immediately start making a six figure-salary! They think they are perfect! They want praise all of the time! (Does no one who writes these sorts of articles stop to consider that many human beings want praise when they complete a task to the best of their abilities?) They have tattoos, dyed hair, and iPods! EVERYBODY PANIC, because the American workplace is apparently going to be dragged down by Generation Y’s entitlement, narcissism and laziness! This narrative, however, seems to apply mostly to a very specific subset of the population (and even the picture that accompanies the NYT article reinforces this): young, able-bodied, middle to upper-middle class, college-educated white people.
This erases, or conveniently ignores, a hell of a lot of folks who are not young, abled, middle/upper-middle class, and white. It erases young workers who may not have had the “expected” educational opportunities (such as college), or who had to take more than the expected four years to finish their degree, or who did not finish school. It erases people whose parents or family members may not have been quite so “involved” in their education, or in their lives at all. Of course, it also erases young people with disabilities — both those who cannot work, and those who want to work but who may be bumping up against various narratives such as that of the “entitled” Generation Y kid. Some of us have psychological issues or disabilities that put us completely at odds with the “overly-confident” and “entitled” stereotype that apparently befits the current generation — because we cannot stop worrying despite the fact that we are supposed to be totally optimistic and confident all of the time, always thinking that the roads leading to our perfect job will be lined with rainbows, fluffy bunnies, and gold.
Some of us have physical disabilities, chronic pain, or chronic illnesses that prevent us from working 40-hour weeks (or more); asking for accommodations or disclosing our condition(s), we fear, may make us look “entitled,” or like we do not want to put in the time necessary to work our way up — even if this is not the case. The fact is that many people, and many young people, with disabilities are already at a tremendous disadvantage when it comes to the labor market and making a living. Not only are many people with disabilities, at least in the U.S., more likely to face lengthy stretches of unemployment and/or live in poverty regardless of age, but many face additional hostility, discrimination, and unreasonable demands, both in the workplace and from society at large because of their disabilities.
While I am not saying that these over-entitled Generation Y-ers don’t exist (I’ve had run-ins with quite a few of them, myself), I am struck by the fact that the narrative surrounding them is so dependent upon erasing or ignoring certain people whose bodies and experiences do not fit the “expected” attitudes about labor that have been traditionally upheld by American culture. Many of these attitudes, furthermore, rely heavily on binaries that reinforce who “counts” and who does not: You either work full-time, or you’re lazy. You’re willing to be mistreated in the workplace and do whatever it takes “for the job,” or you’re a wimp. Suck it up, or go home. If you’re not making enough money to live on or are poor, you just aren’t working hard enough. If you ask for “accommodations,” you’re asking for too much — just do your job! You have to work hard to “make it,” and if you don’t work hard enough, it’s your fault. If you don’t like your job or face daily mistreatment, you can always quit and find another one, right? But if you can’t, it’s your fault, and why did you quit that job, anyway? These attitudes surrounding work affect people with disabilities in a wide variety of age groups and generational cohorts, and this is a crucial part of why they are so important to critically question and examine.
The message for Generation Y, in general, may be “Get over yourself,” but the message for those who do not fit the characteristics of the “average” Generation Y worker is more severe — and ultimately more dire.
[Cross-posted at ham blog]
Austin Avery was born prematurely and suffered developmental issues as a result. Last week, when the school called [his mother] Sharlene, she knew something was seriously wrong. “We had a call from the school to come pick him up cause he was hallucinating. I just don’t understand why your child goes to school and comes home in a drunken stupor,” says Avery. So, she put him in the car and drove to the emergency room. That’s when doctors told her something she never imagined. “The doctor said that [Austin] was way over the legal limit [for alcohol]. Now, can you imagine a 14-year-old child and what kind of damage that can do to his brain?”
The investigation yielded a report from a fellow student, who reported that bullies had been putting Germ-X, an alcohol-based hand sanitizer, in Austin’s milk at lunchtime. This had been occurring regularly since January, without detection by the school or any adult in a position to discipline the bullies.
There are a couple things of note about this story. First is that it got virtually no coverage – I saw it only because I read several hip-hop gossip sites that picked the story up because the child is African-American. Other than those sites, I found absolutely no mention of it anywhere on the web other than the initial report from a local news outlet, quoted above. Intentionally poisoning a child with hand sanitizer seems like a pretty big deal to me – there could have been much more significant and detrimental side effects than alcohol intoxication, and even alcohol intoxication is dangerous enough when we’re talking about a 14 year old with developmental disabilities.
The second thing of note about this story is that Oklahoma already has an extremely robust anti-bullying law and state policy aimed at eliminating bullying. A watchdog anti-bulling group gives the Oklahoma law an A, indicating it is “near perfect” by their standards. Here is a description of their anti-bullying law:
Requires Safe School Committees to give special attention to bullying, incidents of unwanted physical or verbal aggression and sexual harassment and make recommendations. Encourages community involvement, one-on-one student/staff relationships, use of problem solving teams of counselors and/or school psychologists and requires the review of bullying prevention programs utilized by other states, agencies or school districts. Requires each school district to have policies addressing the prevention of bullying and education about bullying behavior.
So – given that all those rules, policies, requirements, and education were insufficient to stop Austin from being regularly and consistently poisoned for almost four months – how can we realistically address and stop this kind of bullying from happening? How can we provide meaningful protection for children with disabilities? Is it possible to do so through laws and regulations, or will only a long term shift in ableist attitudes be effective?
Reader note: I’ve started using my name, ’s.e. smith,’ rather than my pseudonym, ‘meloukhia,’ to identify myself on FWD. I apologise in advance if that causes any confusion! I’m sticking this notice on my posts for a few days to make sure that everyone sees it.
“In Cancer Fight, Teens Don’t Fit In,” the headline proclaims. This New York Times article delves into the gaps in cancer treatment for teens in the United States. Teens with cancer tend to be diagnosed later, and can experience radically different treatment outcomes depending on who treats them and where.
Teens forever seem to be stuck in an inbetween place. They are deprived of rights and bodily autonomy until they reach the age of 18. They can be compelled to accept treatments they do not want. They are assumed to be without value by many people in society and their beliefs are discarded and devalued. This is especially evident in medical treatment for teens, who are often treated as though they lack decisionmaking capacity, don’t understand medical information, and can’t be depended upon.
Simone Weinstein, interviewed for the article, talked about how when she first started experiencing symptoms, it was written off. ‘She [her mother] thought I was being a normal, somewhat lazy, silly teenager.’ It turned out that she had acute lymphoblastic leukemia.
Heather Bongiolatti talked about wanting a support group and not fitting in with the pediatric or adult groups: ‘Most of the adults were parents of children with cancer. And the groups for kids were doing drawing and making crafts. I was 15, I didn’t want to do that.’
One thing which I liked about this article is that it actually centred some teen voices, rather than talking about teens, as the media so often seems to do. The Times took the audacious step of thinking that perhaps, if it was writing an article about cancer among teens, it should interview some teens to get their perspective. Of course, a number of adults were interviewed as well, but just seeing the voices of teens at all in this kind of reporting is a big step forward.
Teens aren’t just ignored by the media. Clinical trials focus on adults with cancer or children with cancer, but not teens, who turn out to be a rather unique group. Teens with cancer are less likely to be involved in clinical trials, and surprisingly little is known about some cancers which are primarily seen among teens. For some teens, being trapped in the inbetween place has fatal consequences.
This article is about cancer, something which some people identify as a disability and others do not, but I think it has wider implications for teens in general and disabled teens in particular. That attitude that teens are ‘lazy,’ for example, is used to penalize people who are forced to take partial course loads or to drop out of school because of disability. It’s also paired with the idea that teens can’t be disabled, because they’re ‘too young,’ and that insistent thrusting of teens into the ‘don’t know what’s good for you’ box means that teens are often treated incredibly patronizingly. Disabled teens, for example, may not be provided with access to sexual education.
This particular aspect of the intersection between age and disability is one which is often ignored. This is something we need to remedy, and in order to deconstruct it, we also need to talk about the routine devaluation of teens and their voices. Why should my words be weighted more heavily because there’s not a ‘teen’ in my age? And, a point especially relevant to Internet conversations, why should our valuations of people abruptly shift when we find out that they are teenagers?
For starters, don’t just read me: Go read some progressive teenage bloggers.
by Laurie Toby Edison and Debbie Notkin
Following up our post here late last year about “disability and aging,” we’ve been thinking about the phrase “temporarily able-bodied,” a mainstay of disability community language which we’ve both been using for 30 years or so.
In Annaham’s Disability 101 post on this blog, she says:
“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.
We have the highest respect for the use of TAB and “temporarily able-bodied.” Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.
At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.
Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.
To return to our catch-phrase, “temporarily able-bodied” is often used as a reminder that disability can come to any person at any time, that you can wake up able-bodied and go to sleep disabled, just as you can wake up alive and never go to bed again. In this meaning, it’s both true and useful. But it’s also used, somewhat more sloppily, as a prediction: you, the individual I’m talking to, will not always be able-bodied. And among the things that are disturbing about that usage is that it encourages the cultural conflation of “disabled” and “old,” so that people in their 30s or 40s who are in some kind of body pain say they “feel old,” when what they feel is pain.
We’ll both keep using “temporarily able-bodied” in conversations about disability. And in those conversations, when we have the time and space to elaborate, we’ll explain how we’re not using it.