Tag Archives: acceptance

On Living Without a Diagnosis

“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis.  This article is about why I am finally OK with that.

First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors.  Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy.  Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome.  Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).

I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.”  Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns.  You might get a diagnosis that is wrong.  You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely.  I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me.  I am not advocating giving up hope: I am advocating having realistic expectations about the medical system.  Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable.  Years later, I am basically in the same state of health that I was when I first got sick.

I have reached a place where I am quite comfortable not having a diagnosis.  I’m sure the medical system does not agree with nor support this stance.  Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?

I say about myself that I have chronic pain and illness.  I have a disability.  If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life.  Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand.  People understand things like migraines, like diabetes or anemia.

There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness.  I could perhaps find support groups populated by people with my same illness.  I could perhaps get government disability benefits.  These things are not impossible to get without a diagnosis, but they are harder to find.  There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.

But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity.  Right here are the tools I need to help me live a life with pain and illness.  Here is a supportive community, coping techniques, theory, friends.  A person doesn’t necessarily need a diagnosis to live here.     ?

A Weird Moment

A cautionary tale, of sorts: Back when I was a young, naive college freshman, I decided to attend one of those campus service/organization ‘fests (meant to introduce many other naive young things to the services available to them at university)–mostly because it was right in my dorm’s common room. Oh, and they were going to have free food. I would have been remiss to pass that up, as the dining commons food at my school was absolutely awful.

One of the organizations at this rather paltry excuse for a festival was the Center for Disability Services; as a burgeoning Women and Gender Studies major who was just coming into the “disabled” identity at the time (a result of having read Susan Wendell’s essay “The Social Construction of Disability” [which you can read on Google Books here] in my Intro to Women’s Studies class), I was rather excited about this. Context is probably necessary here: I was born three months prematurely and had a very mild case of Cerebral Palsy as a result. The CP, which left me with a permanent limp on my left side and a pronounced case of Supercrip syndrome during my childhood and parts of my adolescence, was something that I simultaneously wanted to claim as a disability and maintain as “not that big a deal”–the latter being something I had been taught to do in various capacities, by various social and cultural structures, throughout my life. In short, the Wendell piece had given me a little push toward claiming an identity as a person with a disability.

So, with good intentions and something resembling pride in my heart, I walked to the CDS table, where a woman was standing. The numerous info sheets and pamphlets on the table were perfectly arranged–a sign that this table had not seen too much “business” compared to some of the other tables. I introduced myself, and then took a pamphlet, adding with a smile, “I have CP, so I might be giving you guys a call soon.”

What I received in exchange was a look of skepticism so intense that I quickly lowered my eyes, and then backed away. Had I made a mistake? Was this a sorority table, and not the CDS table? Did she need my medical records, or the many photos my parents took of me in the ICU incubator during the months I spent in the hospital, as proof? Would my hospital ID bracelet–which, at one time, had managed to fit around my wrist, but now barely slid around two of my fingers–have been sufficient?

Many of the reactions to my CP from (seemingly) abled people had, up until that point in time, had generally conformed to one of two types, both of which irritated me equally: “Wow, you are so brave! That is an amazing story!” or “You don’t look disabled/like you have CP. You can’t really be disabled.” This woman’s wordless reaction to my (admittedly overly-friendly) “outing” of myself as disabled had fallen into the latter category.

I can’t say that I was surprised that I had gotten this sort of reaction yet again; what did surprise me, however–and struck me as somewhat ironic–was where it came from.

Recommended Reading for November 16

Just by luck of the draw, today is all news all the time.

Autism is not a dirty word

“They have one line and they just repeat one line. It is a very bizarre sense of autism.” Pierre Lellouche, the French minister for Europe, made headlines with his attack on the British Conservative party’s attitude to the EU. For us Guardian readers, sympathy with Lellouche’s frustration in his dealings with Hague and Cameron will be overshadowed by annoyance, even outrage, at his pejorative use of the word “autism”.

Wikipedia tells us that autism is “characterised by widespread abnormalities of social interactions and communication, as well as severely restricted interests and highly repetitive behaviour”. Doesn’t that describe the Tories in Europe to a T? We all know what Lellouche meant. He wasn’t trying to give a diagnostic definition; shouldn’t we accept his choice of words – as his spokesman has pleaded we should, since “President Sarkozy is called autistic every day” – simply as a colourful way of making a point?

Mind Your Language: Words can cause terrible damage [And, again – I disagree with the idea that calling people names based on disability is the last acceptable taboo and that people are always punished socially for using racist slurs, and never punished socially for using ableist slurs. This isn’t a zero-sum game – we’re not somehow getting less abuse if we acknowledge that other people are getting abused, too. However, I think there’s a lot of good in the article.]

So why is it acceptable against people with disabilities? When did they become such a forgotten minority that they ceased to matter in the battle against bigotry? A group so exiled still from mainstream society that it has become acceptable to fling around hateful words such as “retard” and “spazz” without a murmur of disquiet. Not just in the playground, where these words and many more like them are commonplace, but online, in the office, in the home and in Hollywood.

Employers anxious about hiring people with disabilities, but see their value

More than 100 human resource executives from a cross-section of Ontario-based firms took part in the study commissioned by the Job Opportunity Information Network. JOIN helps individuals with disabilities to find and maintain employment, and assists employers in recruiting candidates.

Among respondents, 36 per cent say they were discouraged from hiring a person with a disability out of concern that it would be harder to dismiss a person with a disability than someone without one.

Family: Gym Took Advantage Of Man With Disability

The brothers of an Indianapolis man claim a local gym took advantage of their developmentally disabled sibling, signing him up for a contract that he couldn’t understand.

Mark Hannon is 49, but functions at a much younger age, the family told 6News’ Rafael Sanchez.

That’s why they were upset when Hannon told them that two men representing Bally’s Total Fitness came to his door last week, offering to sign him up for a gym membership.

Harvi Carel: My 10 year death sentence

“So, how long have you got?” The first time I was asked this question, I was dumbstruck. The horror of it, and the casualness with which it was asked, was too incongruous for words. Was it simply curiosity? Ignorance? A clumsy attempt to “connect” with me? What else could motivate someone to ask such a horrific question? Yet, it’s a question I have been asked again and again – by friends, acquaintances, even strangers who have seen me sitting in a café with an oxygen cylinder beside my feet.

Once you are ill, I realise, you become fair game. You slide down an implicit social ladder. Others begin to perceive you as weak and unimportant, an object of pity and fascination. In asking: “How long have you got,” they compress all their horror, anxiety, pity, and relief that this is someone else’s story. How else to explain how people find the obtuseness and cruelty to ask you – in so many words – “When are you going to die?”

More Tales From the Good Doctor Files

I’ve seen a fair number of doctors in my day, and I experience a varied range of interactions with them on a regular basis. Very rarely do I encounter a doctor about whom I rave, because, for the most part, my interactions with medical professionals don’t go well. I’ve rarely been treated with outright rudeness, but I have encountered condescension and snobbery and that sort of thing because of who I am, my size, my life.

Which makes me want to start lauding the rare positive encounters I have, as kaninchenzero recently did in “How to Be a Good Doctor.” The doctor I’m writing about today isn’t actually a doctor, she’s a physician assistant, and she performed my annual exam several years ago, but my experience was so positive that I still remember it vividly.

My appointment started, as they always do, with me arriving 10 minutes early and then sitting in the waiting room for 30 minutes. It’s a very busy clinic, the place where I go for reproductive health stuff and primary care, and I’m used to that. They overbook the schedule a lot, and a lot of seemingly simple appointments turn more involved as the patient says “I’m having suicidal thoughts” or “hey, what do you think I should do about this huge bleeding ulceration on my foot” right as the doctor is leaving the room. So, I bring a book and try to stay calm.

Which is hard. The waiting room is often really crowded, which makes it very noisy, and forces me to sit sandwiched between people, which tends to make me anxious. On this particular day, though, I wasn’t bothered as much, because I was still kind of riding the high from a very intense scene the night before. It was one of those rare nights where I went deep into subspace, that place in my head where I can go when I trust the person I am playing with completely and totally, and just turn into a ragdoll. I like that place, and it leaves me feeling good for days when it plays out well.

So, eventually the nurse emerged to bring me through to the back where I could be weighed and measured. The first awesome thing that happened is that the nurse did not calculate my BMI. There’s an ominous little chart next to the scale, so I was fully expecting her to, but no, she just noted my height and weight without comment or judgment. And she brought me to the exam room, where I changed into the woefully inadequate exam gown and girded my loins for battle. (Literally in this case, I guess.)

So, the PA walked in, and she apologized for the fact that I had been kept waiting before we went over the quickie basic questions to make sure that nothing in ladytown was exploding. And then we started getting into that trickier ground about sexual partners, which I answered honestly, noting that I very rarely have penetrative sex but I did engage in sexual activity with more than one person, and she noted it without comment. Not even a freakin’ eyebrow.

And then, she went to listen to my heart and lungs, and she said “what are these marks,” and I realized, oh, that’s right. I was covered in all sorts of marks which must have looked pretty horrific and nasty. I took a deep breath. How do I explain this? I think it’s good that doctors take note of marks which look like abuse, and I want to make it clear that this is not abuse, but that I am not at all upset that she asked about it. It’s pretty reasonable to assume that marks like these are the result of abuse.

“I’m a member of the BDSM community,” I said, finally. “Those are probably marks from the consensual scene I was in last night. I know what they look like, but…really, I’m not being abused. I’m ok.”

“Oh, ok,” she said. There was a bit of a pause.

“I guess that’s pretty rare up here,” she says.

And then, we actually had a conversation. About what BDSM is, what it means to be safe, respectful (which I prefer to the ableist tagline “sane”), and consensual. About how boundaries are negotiated, the steps people take to protect themselves. I touched very briefly upon some ways that you can identify abuse in a BDSM context, where things like burn marks and scars and rope marks don’t always mean what you think they mean.

And she was so respectful. She obviously wanted to learn, to file this information away to help her work with  other patients, but she didn’t make me feel like a laboratory animal, she didn’t make judgments, she just absorbed information and asked clarifying questions and noted down some of the resources I recommended.

It was…refreshing. Other interactions I’ve had with doctors about this have not gone well. And when we were done, she finished the exam, taking the time to be slow and respectful and to actually respond to my statement that pelvic exams are usually excruciatingly painful for me. She took steps to make it less painful, delivering the least painful pelvic exam I’ve ever had. It was uncomfortable. But it didn’t make me writhe on the examination table. And it was fast.

Disabled sexuality is already marginalized, so when you are disabled and you are a member of a community which engages in alternative sexuality, you become even more marginalized. This isn’t just about the need to find a doctor who respects me, it’s about the fact that services are denied to people because of their sexuality, and this problem is even bigger for people with disabilities. When I meet a doctor who is accepting, I feel safe and comfortable. I feel like I can be open. And I feel like we can have a productive relationship with each other.

She didn’t make assumptions. She listened to me. She reflected statements back at me. And when she was finished, and I got dressed, she stopped back in to personally thank me. To thank me for taking the time to educate her. As a patient, I am not used to being thanked. It was a good feeling that she left me with.

Recommended Reading for November 13

Mental Health and Promiscuity

However, even in this environment there is one area that has always troubled me and that revolves around the concept of promiscuity as diagnositic criteria.

My first and biggest problem with this is that I have NEVER heard this brought up as a symptom of mental illness when discussing a male. It is always something that is brought up about a female. I can’t help but assume that this is linked to the belief that “excessive” sexual activity is normal for a man and not a symptom of mental illness while no “healthy” woman would engage in or enjoy casual or alternative styles of sex. I also think it is linked to the belief that women are the only ones that have sex with other people due to low self esteem or possibly in a reckless manner because they have some self-destruct tendencies. See, sex is damaging to women, they can’t just enjoy casual encounters or engage in sex purely for self-satisfaction: they must be wounded in some way or they must be wrongly searching for the intimacy they so desire.

Reasonable Accommodation

I find myself caught between disabilities.

One of my most promising paths forward health-wise right now is finding a low-impact, non-repetitive form of exercise. Since I have done yoga in the past, I have been searching for a yoga studio. But since I’m in the western suburbs of St. Louis… there just isn’t much here. The most promising place, that offers classes that fit into my schedule, that is likely to be understanding and accomodating of my back issues, is Bikram.

Now I did Bikram a few years ago and loved it – unfortunately, over the course of a couple of months the humidity in the room (Bikram is “hot” yoga, done in a room that’s about 90 degrees) started making my hearing aids go wonky, so I stopped.

You Can Make Fun Of Us But You Can’t Give Us A Chance

The character was dressed in a blue latex suit that covered his head, and he was constantly babbling like an idiot and drooling on himself. I admit that I found the Handiman skits to be hilarious when when they first premiered. The disabled community had been non-existent in Hollywood up until then, and it continues to be non-existent today, so it was good to see some representation, and me not knowing how much of a negative image it was at the time, appreciated the recognition.

I was in my junior year in high school when Handiman made his debut. Ever since I was mainstreamed back in the fifth grade, I have always caught hell because of my disability. I remember being teased many a-day throughout grade school, high school and even college. Handiman perpetuated the stereotypes that people had about people with disabilities. Even to this day, the techniques have changed, but I pretty much know when people are trying to belittle me. Children aren’t as cunning or crafty to hide their emotions, so they would usually laugh or make “retarded-stupid” comments about me.

The Usefulness Factor

Sometimes you can maintain a career from your own home, such as on the computer or as a consultant on the phone. Sometimes you just need to stop and re-think the whole idea of being useful. The question of “why am I here?” seems to become magnified when you become confined to a small physical space with others doing all the things you used to do for yourself.

But that does not mean you have become useless. It is very easy to fall into the trap of believing that, especially when people say things like, “it must be so nice to be home all the time and do nothing!” It is not particularly nice to have no impressive answer when people ask what you do all day, but if you are able to ignore that and realize that everyone is on this earth for a reason, you are on your way to finding a new sense of purpose. Maybe not a financial one, but perhaps a spiritual one, which is even more important.

In the news:
Francesca Martinez: A Wobbly Girl Battles Against The Last Taboo [Although I disagree with the idea that disability is the “last taboo”]

Francesca Martinez’s victim is squirming. Trapped under the scrutiny of the comedian and fellow members of the audience at her show in Edinburgh, he is clearly wishing for the proverbial hole to open up. “What are you bad at?” asks Martinez. “Football,” comes the sheepish reply. “Were you born like that?” she enquires, head tilted in sympathy, “Couldn’t your mum have had a test when she was pregnant?” Turning to the man’s girlfriend, she simpers: “You are so brave. Well done… Does it mean he can’t have sex?”

Martinez’s humour bears a political sting. As one of a tiny number of disabled performers who have made it into the mainstream, she is not about to waste opportunities to ram home a message. Born with cerebral palsy, the 31-year-old refuses to accept the label of her condition, preferring to describe herself as “wobbly”.

Recommended Reading for November 9

Spoon Theory and Me (It’s all about me)

I’ve been reading about the Spoon Theory and kinda going, yeah, that doesn’t apply to me. (Basically, we all have a number of spoons that represent what we can do that day. Healthy, temporarily able bodied people (age will get us all!! Run!!) have an unlimited amount. Those not so able-bodied do not.)

Thinking about the Spoon Theory and applying it to my life is scary because dammit, if I write down that it hurts, then it really happened and it just won’t go away. If I don’t classify it, it’s not there. Denial is awesome unless WILL YOU STOP STABBING ME. See?

But I do use it, I realized today.

Identity Matters

It brings up some interesting thoughts for me about “what actually is disability?” That’s medical vs social model stuff, but its not just that. Its about the labels we as people with impairments use to define and describe ourselves. What boxes we put ourselves in and how easily or not we communicate with those in the other boxes of disability.

What it is to be a monster

You know you a monster when almost all the depictions of your condition in the media show you as either a joke or a jerkass. It gets to you. You begin to wonder if those you call your friends see you the same way. Are they keeping you around for the crazy antics? Do they like the real you, who ever that may be?

Positive Experiences with Disability Activism

I had some really positive experiences today with some disability activism that I would really like to share. The first two were at work and the third at an after-work conference for language development in the Middle Swan area.

In the news:

Student files suit against U. [Princeton]

Metcalf-Leggette’s complaint asserted that she has four learning disabilities, which were diagnosed in 2003: attention deficit hyperactivity disorder (ADHD), mixed-receptive-expressive language disorder, disorder of written expression and developmental coordination disorder. The conditions, according to the complaint, hinder her ability to focus, process information and communicate in writing.

The suit comes after a series of meetings with school officials during which Metcalf-Leggette sought accommodation for her disabilities. The University currently accommodates Metcalf-Leggette’s disabilities by offering her a “reduced distraction testing environment,” a limit of one exam per day and a 10-minute break each hour, the law journal reported.