Tag Archives: disabled teens

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.

The New York Times Tackles Teens and Cancer

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.

Give Teens With Disabilities Access to Sexual Education

Yesterday, the Guttmacher Institute issued a press release with some study results which attracted a great deal of attention. “Following Decade-Long Decline, U.S. Teen Pregnancy Rate Increases as Both Births and Abortions Rise” hit the wires and the speculation started almost immediately. Many members of the feminist community argued that it was the result of the total failure of abstinence-only education, a form of sexual education I’ve long railed against, and advocates for abstinence-only argued…well:

Others said the reversal could be due to a variety of factors, including an increase in poverty, an influx of Hispanics and complacency about AIDS, prompting lax use of birth control such as condoms.1

…yeah. Thanks for that.2

Teen pregnancy in the 1990s dropped radically. Now, it’s on the rise again, very much in line with predictions made by researchers. And there is a pretty demonstrable link here between the rise of abstinence-only and the rise in the teen pregnancy rate. This much is clear, and it’s a link which should be discussed.

But there’s another issue which I haven’t seen getting very much coverage: The denial of sexual education to teens with disabilities, even in areas where sexual education of some form beyond “keep your legs closed until marriage” is offered. This is not fair to disabled teens, and to people with disabilities in general, and it’s something which needs to be addressed, pronto, because we should be at the point in society where we recognize that all teens including disabled teens need access to balanced information about sexual health, contraception options, and recognizing abusive relationships.

People with disabilities are at increased risk of being sexually abused.3 Young people with disabilities are especially vulnerable.4 You know what happens to people who are vulnerable to sexual abuse who do not receive sexual education? It makes them more vulnerable.

It’s time to recognize, as a society, two important things:

  1. Some people with disabilities like to have sex.
  2. People with disabilities in general are at increased risk of sexual abuse and assault, whether or not they are sexual.

These must be acknowledged so that we can start focusing on making sexual education fully accessible. Because this is a critical step in breaking down a vicious cycle which perpetuates not only widely believed stereotypes about people with disabilities, but abuse of people with disabilities, including justification of that abuse.

We need to be providing disabled teens with tools which they can use to make choices about their sexuality, like if they want to have sex, with whom, where, when, and how. And, given that able people sometimes have disabled partners, providing people with non-judgmental information about sex and disability is pretty important. Plus, admitting that some disabled folks enjoy sex too can break down a lot of social stigma, including the attitude that people with disabilities can’t have sex or don’t like to have sex. When even supposed professionals ask questions like “is your partner capable of having sex,” it illustrates a profound lack of awareness.

And we need to make sure that information about recognizing and addressing abuse is provided in sexual education, with a special focus on recognizing, preventing, and handling abuse of disabled persons. We also must ensure that people have the ability to report abuse, because almost every study I see about abuse and people with disabilities includes some variation of the line “unfortunately, reporting of abuse is limited, which makes it difficult to arrive at accurate estimates…”

Not including terms to describe sexual abuse in a communication book, for example, is a pretty effective way to prevent someone from reporting sexual abuse. Sterilizing institutionalized women so that they can’t get pregnant when they’re being sexually abused by caregivers is another very effective way to make it hard to get accurate statistics on abuse. Not giving people with disabilities the language they need to describe abuse perpetuates abuse. So does ignoring reports of abuse from people with disabilities.

Disabled teens need sex ed. It’s time to give it to them.5

  1. Stein, Rob. (2010, 26 January) “Rise in teenage pregnancy rate spurs new debate on arresting it.” The Washington Post, A04.
  2. Insert meloukhia-rant which would otherwise eat up this entire post here.
  3. Myers, Leslie. (1999) “People With Disabilities and Abuse.” Readings in Independent Living.
  4. Mansell, Sheila, Sobsey, Dick, Wilgosh, Lorraine, and Zawallich, Andre. (1996) “The sexual abuse of young people with disabilities: Treatment Considerations.” International Journal For the Advancement of Counseling, Volume 19, Number 3. Pp. 293-302.
  5. And it’s time to make some pretty major changes in the sex ed system in general. Abstinence-only aside, a lot of sexual education is highly heteronormative and binarist. Sexual education needs to be much more inclusive of a lot of things.