Tag Archives: personal stories

Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family.  When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from.  When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort.  I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit.  Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school.  Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively.  Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says.  These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home.  Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult.  Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life.  Her response terrified me in a way few things have: “Well, you’re the one having trouble.”  The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out.  I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved?  I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse.  They are afraid of losing me forever to a terrible situation, and cling more tightly.  I am afraid of losing myself forever by staying.  No one is happy here.  No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both.  I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening.  Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact.  I would also lose absolutely all contact with my brother, niece and nephew.  Sadly, I know that if I chose to play family politics here, I would “win”.  It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family.  I have a few very close friends from college and my neighborhood who have helped me tremendously.  I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there.  The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life.  Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way.  It is in this very community that I came to accept my right to feel angry and defeated at times.  I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days.  I am hoping that this ability and time will lead to a healthy resolution with my family.  If not, I already belong to a strong community here.

*Trust me, it works.  You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Recommended Reading for December 21, 2010

James S. Fell for the Los Angeles Times: Holistic nutrition is weak on science, strong on selling supplements

You may not know the term, but you’ve surely heard its claims. Among other things, holistic nutritionists (or HNs, as they call themselves) may teach that fluoride and pesticides are lethal, that most diseases and detrimental behaviors are diet-related and that many people would benefit from taking numerous supplements. I’ve read plenty of articles by HNs in which they assert that they are disparaged by mainstream medicine and warn you not to trust modern medicine.

Gina Kolata for the New York Times: Tests detect Alzheimer’s risks, but should patients be told?

It is a quandary that is emblematic of major changes in the practice of medicine, affecting not just Alzheimer’s patients. Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.

Kathryn Roethel for the San Francisco Chronicle: Chronic migraines: When pain is all in the head

After Robertson’s headaches began, she started wearing sunglasses to school because the migraines made her sensitive to light. Then she gave up fencing – a sport she’d competed in for seven years. She cut school to half time, then had to quit altogether.

In their Potrero Hill home, Robertson’s family put in skylights because the light bulbs were too bright for her. They stopped cooking with garlic and onions because the scents made her nauseous. On the rare occasions when she is well enough to eat meals at the dinner table, her mother lowers the lights and everyone speaks calmly and softly.

David Sirota at Truthout: Why the “Lazy Jobless” Myth Persists

First, there’s what psychologists call the Just-World Fallacy — the tendency to believe the world is inherently fair. This delusion is embedded in our pervasive up-by-the-bootstraps, everyone-can-be-a-millionaire catechism. The myth of the lazy unemployed can seem to make sense because it connects those ancient fables to current news, effectively alleging that today’s jobless deserve their plight.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Mental Illness: Brain Function Impairment

Re-branding the current term “mental illness” to the more accurate description “brain functioning impairment”, will go a long way towards solving our stigma problem. We can reposition the impairment term as the politically correct term, and phase out the awful connotations of the old term. At a minimum, rebranding will go a long way toward forcing the general public to change its perception of people with BFI.

Recommended Reading for December 14, 2010

K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Recommended Reading for 10 December, 2010

Well, if it isn’t Friday again. I suppose it is for you, readers of the future, but I am writing this from Tuesday, in the past! Such is the power of the blog’s scheduling function.

Gentle reader, be cautioned: comments sections on mainstream media sites tend to not be safe and we here at FWD/Forward don’t necessarily endorse all the opinions in these pieces. Let’s jump right in, shall we?

An Actor Finds Truth & Power Negotiating her Vision Loss by Marilee Talkington guest posting at Brains of Minerva.

So I decided I wouldn’t tell the directors or anyone on the casting end that I was visually impaired. Which always felt like a betrayal. And I would show up as early as I needed to to re-write the entire script by hand in large print.  I hadn’t learned how to vocally advocate for myself yet in a way that didn’t feel angry or demanding, so at times I flat out lied. I remember calling an audition hotline once using a different name and asked if someone who was visually impaired could get the script ahead of time to memorize.  I was told that they couldn’t because it would pose an unfair advantage over the other actors.

Why CART in Government? by Martha Galindo at CCAC In Action:

1. Good government leads the way for all its citizens by setting best standards for equality and inclusion.

2. To reduce discriminatory gaps which now still exclude many able citizens (who happen to be deaf, deafened, or have a hearing loss, or who need quality text for many other good reasons) from regular and important government meetings, workshops, rallies, advisory committees, and public input to city, state, or federal bodies.

Lene Anderson at The Seated View: Disability Time

So there I am, sitting in the waiting room a full hour and half before my appointment and although I had a book, I was annoyed, so instead I started thinking about Disability Time. You don’t find it mentioned much in Google in the way it’s used in the disability world, but maybe some day, it’ll make its way into search engines. Disability Time refers to the way in which most things take much longer when you have a disability. There is personal Disability Time, as in it probably takes me double the time to make a cup of hot water in the microwave that it would you and then there is the Disability Time that’s imposed by others and there are a couple of those.

Donna Jodham: Out of sight out of mind

A few months ago I had a meeting with some officials of a financial institute to discuss making more financial planning services available to blind and sight impaired persons and at that time I raised the issue of making information available in alternate formats such as Braille, large print, and electronic text. To my chagrin but not to my surprise, the officials admitted that they had never thought of doing so. I also had a similar meeting with a major supermarket chain in Toronto to discuss making their weekly specials more available to their blind and sight impaired customers either online or through a phone service and again, I was told that this had not been thought of up until now.

Claudia Dreyfus for the New York Times: A conversation with Julian L. Seifter, Nephrologist and Patient. It’s an interesting interview with a physician, Dr. Julian Seifter, who just cowrote a book on living with chronic illness.

Q. Has being a patient helped you be a doctor?
A. I’ve certainly learned things I’ve brought back to the clinic. I have a retinopathy, for instance, which can be a complication of diabetes. I don’t have good vision in my right eye, as a result. When this first happened, I said to my ophthalmologist, “I can’t lose vision. I need to read.” And he said, “Any vision is better than no vision.”
That was important. I started thinking, “Concentrate on things you still can do and develop some new things.” I’ve since started gardening, which doesn’t require the most acute vision. It’s something I probably wouldn’t have done otherwise. I counsel my patients to replace what they’ve lost with something new.

Send your links to recreading[@]disabledfeminists[.]com. Let us know if/how you want to be credited. And have yourself a fabulous weekend.

Recommended Reading for November 23, 2010

miss_invisible at Take a little look… (DW): Origins

I often find myself wondering when, exactly, everything started. Have I always been dealing with mental illness? Have I always been, to greater or lesser degrees, disabled? At times the wondering borders on obsession, the inability of my anxious mind to let things go making me turn the thought over and over in my mind. Maybe part of me thinks that if I knew when it started, if I could find some moment and say, “This is when it began,” then maybe I could master it. I could understand it, I could control it, I could fix it. Ridiculous, obviously, but a lot what goes on in my head has fairly little to do with logic.

Shoshie at Catalytic Reactions: Afraid to Fly (trigger warning)

I particularly worry about flying the day before Thanksgiving.  The flights are so full, the airlines are looking for any excuse to boot people.  And now, there’s the added stress of the body scanners/grope searching.  I don’t want to go through the body scanners.  I don’t want someone to see my naked body.  I’m not ashamed, but I haven’t done anything wrong.  They have no right.

Lene Anderson at The Seated View: Everyday Hero

The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It’s as if there’s a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.

BenefitScroungingScum at The Broken of Britain: Clare’s Story

I’ve been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn’t have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That’s when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn’t go away and slept through my final year too.

Shari Roan for the Los Angeles Times: Sensory stimulation could prevent brain damage from stroke

Imagine a safe, inexpensive and drug-free way to prevent the long-term brain damage that often follows a stroke. No such treatment exists, but a new study involving rats suggests it might not take much to prime the brain to repair itself in the immediate aftermath of a stroke. For the rats, the simple act of tickling a whisker was enough to allow the animals to regain full cognitive function after a severe stroke — as long as the treatment was given within two hours.

Harriet Hall at Science-Based Medicine: Chronic pain: A disease in its own right

Herself a victim of chronic pain, [author Melanie Thernstrom] brings a personal perspective to the subject and also includes informative vignettes of doctors and patients she encountered at the many pain clinics she visited in her investigations. She shows that medical treatment of pain is suboptimal because most doctors have not yet incorporated recent scientific discoveries into their thinking, discoveries indicating that chronic pain is a disease in its own right, a state of pathological pain sensitivity.

Happy post: Winston

Image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle

[Image description: image shows a small silver and blond Yorkshire Terrier with its two front legs up on a railing in an outdoor setting, its red leash off to the right side. It is photographed from a high angle.]

I’ve been meaning to write this post for a while, and have never quite known how to start it. I’ll start with this: like a lot of PWDs, I have a pet. I’m sure that posting something about one’s beloved dog on what is a strongly political site seems unusual, but as of late I have been reading many dog-related blogs (mostly on Tumblr) and am consistently moved by posts where the submitter talks about their pet and some of the many varied aspects of the human/animal bond.

I have a pretty old (for the breed) Yorkshire Terrier named Winston. While he is not a service dog (he is too ill-behaved to ever serve in that capacity, and I suspect that fibromyalgia is not a condition that qualifies for a service animal!), he makes my life immeasurably better. Oh, he’s kind of a brat, but his general attitude is so completely, bizarrely happy most of the time that I can’t help but smile whenever he’s around. Yorkshire Terriers are supposed to be one of the smarter (albeit louder) small breeds, but Winston is not the brightest bulb around. This is not a bad thing, however — his other personality traits make up for the fact that he can’t do very many tricks (outside of sitting, particularly if food is involved).

Small dogs, in general, may seem like they’re a pain in the ass to take care of, at least to outsiders. Certainly, there are some small dogs with very high energy (I’ve met a few) who need to be walked multiple times per day so that their owners can get some relief from the dogs’ barking or constant need for attention. Fortunately for me, Winston is not one of these. He has a lot of energy, but this is mostly because he sleeps upwards of 10 hours per day. On days when I’m not feeling well and need to lie down or take a nap, Winston is more than happy to hang out. If I am in too much pain to take him on a long walk, he seems perfectly happy with a shorter walk. All things considered, he’s a pretty mellow, fairly agreeable little dog — except for when he sees other dogs, which is very often an occasion for over-excitement, and possibly a lot of barking and/or straining on the leash.

Somewhat hilariously, he also snores. Loudly.

Guest Post: Stuck and tired: How universities are failing disabled students (like me)

Diane Shipley is a freelance writer obsessed with feminism, US TV, memoirs and pizza. She writes about those things and more at her blog, the imaginatively-named Diane Shipley Blogs (http://blog.dianeshipley.com) and is almost always on Twitter (username: @dianeshipley).

You’re intelligent, personable, and get good grades. It might look like higher education is a given.

But it isn’t. Not when you have a disabling illness. Then, making it to graduation could be more challenging than you ever imagined.

Last year, I tried to finish the degree I dropped when I got ill back in 1998. The disability services department at my new university contacted me the summer before I started my course, asking what extra help I would need.

I had never been a student with disabilities before, so I couldn’t anticipate all the challenges I might face. But the system for reporting those I was aware of seemed doomed to failure: a disability advisor emailed my department in the first week of the semester to advise them that I needed my seminars and lectures to be accessible. Inevitably, this was too late. One of my lectures was in a building with a lift that was almost always out of order, leaving me the choice of missing out or making myself ill. And my registration experience was disastrous.

Registration and enrolment were in two separate buildings nowhere near each other. As no buses ran in that direction, this meant a fifty-minute round trip on foot, well beyond what I could cope with. So I emailed the university to explain this, asking if I could register and enrol online, instead.

Here’s where I point out something that should be obvious but seems not to be: when disabled students express a preference, it shouldn’t be brushed aside in favour of what administrative staff would prefer. Being assertive can be very difficult, especially in situations where someone has power over you. Expressing one’s needs can also be embarrassing, as many long-term illnesses and disabilities are stigmatised. It’s an issue that deserves to be treated with sensitivity, but too often isn’t.

Instead of granting my request, a member of staff from registry services suggested I meet her late in the afternoon, instead. Because her address was at the end of her email, and was somewhere I could access by bus, I agreed. But when I went to her office at 5 PM on registration day, the shutters were closed. Tired, upset, and alone, I vented on Twitter: “I don’t think this university cares about disabled students.” Then I called my mum in tears and she offered to leave work and drive me to the building where registration was taking place. I finally made it and explained the mix-up to one of the staff, who said someone there wanted to speak to me.

The head of registry services strode over and introduced herself, a stern expression on her face. She then shouted that I couldn’t say what I liked on Twitter without giving them “right of reply” and that the university did care about disabled students. “I’m fully conversant in equality law,” she snapped. When I mentioned the mix-up over where I was registering, she said that perhaps I should read emails more carefully in future.

She wasn’t wrong: I could have double-checked. But in my defence, starting university was an overwhelming undertaking, and confusion and anxiety are big parts of my illnesses. I had also made the mistake of assuming that no-one would suggest we meet somewhere I had specifically said I couldn’t access.

I was finally able to register but because of the delay, I couldn’t get into the student intranet until two days later, so the seminars I wanted to sign up for were full. This meant that instead of organizing them at times to suit my illness, I had to take whatever was left. When I contacted my departmental disability liaison officer to ask if I could be squeezed into more convenient seminars for a couple of subjects,  he demurred, and I got the impression he thought I was trying it on. I didn’t have the energy to argue that this seemingly small issue was essential to the management of my illness.

As I thought I would, I struggled with my schedule.  Ten hours of class time isn’t much, but I hadn’t counted on the extra time I’d need to walk to lectures (and then sit down and catch my breath). In retrospect, I needed to take taxis to my classes. But I was reluctant to organise this because one of the disability support staff told me that some taxi drivers were “funny” about short journeys.

But my biggest challenge was the fire alarms, which went off once or twice a week. We would traipse out of the classroom, walk down three or four fights of stairs, stand around for ten minutes, and then go back up again. I had no idea what disabled students were supposed to do, and didn’t know who to ask, so I just struggled on, my muscles spasming from pain and stress.

I know what some people will think: maybe I was too ill to be at university in the first place. But I had a good reason for attempting it: money. In England, if you’re on a full-time course, you are entitled to loans, grants, and bursaries, which add up to (just about) enough to live on. A part-time student is only entitled to £225 a year. So I took a risk.

It’s a risk that failed. Although I could cope academically, physically I was falling apart. After five weeks, I suffered a severe stress-induced relapse and the university recommended I take a leave of absence. This meant I wouldn’t have to reapply if I felt well enough to return, but I wouldn’t be entitled to student finance or disability benefits during this time, either. I only scraped by thanks to my overdraft, a little writing work, and my supportive parents.

This summer, I had to decide whether or to go back. I decided against it. I didn’t feel well, and I didn’t feel welcome.

I don’t think my experience is unique: I suspect it is more common than universities realize. The way I was treated is part of a much larger problem: how we, as a society, view people with disabilities. We need to stop being surprised when someone has special needs, and there needs to be a socially acceptable way of saying “I can’t do that,” or “I need more help”, especially in educational institutions and the workplace.

Policies like the British government’s plan to reduce the number of people claiming disability benefits (without regard for the number of people with disabilities) perpetuate the sadly still prevalent belief that those of us who have disabling illnesses which are not terminal or immediately visible are lazy, when nothing could be further from the truth.

The fact is, students with disabilities need better support. An attempt to understand and cater to students’ individual needs rather than just paying lip service to the idea of equality would be an excellent start.

Heel, toe

As I’ve mentioned previously, I have fairly mild cerebral palsy that mostly affects the left side of my body, and my left leg and foot in particular.

I’ve had sort of a strange relationship with my left side, and the foot attached. Because my left leg is a few inches shorter than my right one, my left foot has made a bizarre and ongoing effort to make up the difference. While my right foot moves “normally” — that is, when I step with it, the foot goes fairly flat once on the ground — my left foot moves and rests in a manner that is probably better befitting a pointe shoe. My left foot tends to step forward with the ball of the foot and the toes, instead of having a flat gait like the right foot. As a result of my rather odd gait, I have very thick calluses on both the ball of my left foot and all of my left toes — and no callus at all on my left heel.

With the help of physical therapy, I spent much of my childhood and adolescence trying to make my shorter left leg and foot “match” the gait of its twin — even when it physically hurt to do so. [I should point out here that I most definitely do not mean to knock physical therapy as a whole, which has helped me immeasurably and has been helpful to a great many folks!] One advantage of physical therapy was that it made my left leg stronger, and made my balance somewhat better as a result; though my left side’s balance isn’t amazing or superhuman or all caught up with the right at this point in time, it is better than it was previously. Thanks to my existing mental health issues, before I started having chronic pain issues (which directed my focus to other things — namely, how I feel, physically, instead of whether my body parts “look right”) I was pretty used to mentally raking myself over some very hot coals for not being able to make my left leg as “good” as the right.

At some point, I decided to stop making myself feel terrible about the fact that my leg left and foot will probably never match totally with the right side’s leg and foot. Yes, I walk sort of oddly. Sometimes, I can keep my left heel and leg “down” correctly and am able to move them like they should move; sometimes, I can’t do either (particularly during fibro flare-ups). My left leg is still useful, even if it is skinnier and less-developed than my right. My left foot is still awesome, to me, even if it is kind of spastic, tends to stick out at a weird angle and has calluses in all the “wrong” places. Trying to walk “correctly” has been an ongoing process for me, and the fact that I often cannot do it — and can, simultaneously, be okay with that — has been crucially important to self-acceptance. There is no use, after all, in mentally flagellating myself for not fulfilling what I have found to be an unreachable standard.

Imperfections

I am one of those people who often cannot ask for help.

At times, I am so afraid of seeming weak, or whiny, or overly-sensitive, or dependent on other people that I tend to either ignore my own needs until I start flailing around at the last minute in order to not get overwhelmed, or minimize the possibility that some things could be going wrong. I am one of those people who needs to outwardly look like I know what I’m doing and that I have things totally under control — preferably at all times. (Intellectually, I know that this expectation is intensely unrealistic, and can be dangerous; even the most “put-together”-seeming person can be a total wreck in private.)

Part of this is a defense mechanism that I developed around the same time that I started getting made fun of in grade school for my mild cerebral palsy and the limp it caused. Somehow, I figured that if I could be perfect at something — my something being academics — and make it look effortless, other kids would stop making fun of me. This didn’t work out quite the way that I planned; regardless, I still tend to hold onto remnants of this habit.

Part of it is also my own internalization of the cultural ideals that tell people with disabilities that we must always “compensate” for the imperfect status(es) of our bodies or minds, a la the Good Cripple or Supercrip, as well as the cultural messages that tell many women that they must be “perfect” while making it look downright easy, in accordance with the current “ideal” feminine role. A great number of women are told, in ways subtle and not, that we must try to “have it all,” and do it without a drop of sweat showing. We must look good all of the time, we must wear clothes that are “flattering”, we must keep a figure that approximates whatever sort of beauty standards happen to be “in.” We must take care of others’ needs and feelings and make this our number one priority, and think about ourselves last (if at all). We must project an outward appearance of cheeriness, strength, or deference, no matter how we might actually feel. If we cannot do most or all of these things, we have failed. And when this loaded set of expectations intersects with the PWD-compensating-for-disability trope, look the hell out.

These are just a few examples, of course, and these expectations shift in various ways depending upon race, class, ability status, sexuality, gender identification, education, and a host of other factors that are often derided as being remnants of “identity politics.” Identity and its politics, however, still continue to matter.

Here’s where I am going with all of this: For the past few weeks, I have been dealing with newer and more unpleasant fibro symptoms that are starting to affect my day-to-day life. At first, I thought these symptoms were just the result of a bad day, and then a bad week, bad month, et cetera (you can probably guess as to where this leads). I wanted to believe that these symptoms were not a huge deal, and look like I knew how to deal with them until I made it back to “normal,” however tenuous that position is for me. Now that these new and interesting symptoms have become a bigger deal than I had anticipated, a lightbulb has also gone off in my head: I need to work on letting go of this all-or-nothing, but-I-should-always-have-it-together-even-when-I-don’t-and-do-not-need-help mindset.

Today, I finally made the decision to schedule a doctor’s appointment to get help with my new symptoms.

Acknowledging that I don’t have some things completely “together” and that I (gasp) need medical help with these symptoms may be a tiny first step toward changing the tape loop in my brain that tells me that I am on one side of a binary — that I am either a or b, all or nothing, need help with everything or do not ever. There is a middle ground. Until now, I haven’t been able to acknowledge that.

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.