Everything healed up
but in a very strange way
Years later
when it was very obvious
that something was very wrong with my face
everyone
said one or more of the following:It’s the Lord’s will.
Just learn to live with it.
It’s all in your imagination.
Don’t be so self-centered.
Shut up and do your homework.
Other people are worse off than you.
[Full text available in the 2004 anthology Queer Crips: Disabled Gay Men and Their Stories, edited by Bob Guter and John R. Kilacky.]
Answer: Yes.
Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:
There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.
Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:
The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.
OH MY GOD, EVERYBODY PANIC.
Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?
Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.
After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:
One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.
Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.
In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about painkillers and (possible) ADDICTION!!11.
Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.
But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.
And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.
Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).
I suggested a treatment/”cure” to a PWD for her/his/zie’s condition, and they ignored my suggestion/did not throw themselves at my feet with gratitude/got upset. Why? I was only trying to help!
Many people who do not live with chronic health issues, perhaps in a spirit of wanting to help those they know who are in pain, disabled, chronically ill, or affected by a neurological or mental health condition, may suggest different treatments or ways that they believe the person with the condition, illness or disability should use to “get better.” Many PWDs and chronically ill people, however, have experienced this exact process before, and often to the point where such “well-meaning” pieces of advice get…well, annoying; a stranger, acquaintance, co-worker or relative might suggest something that has been suggested many times before. Such “well-meaning” suggestions may imply some very different things to the PWD, chronically ill person, person with a mental health condition, or non-neurotypical person, namely:
…that they cannot be trusted to manage their own health, disability/disabilities, or course of treatment. Many people with disabilities and chronic illnesses have found treatments that improve their quality of life. Even with these treatments, they will probably still remain disabled/ill or still have their condition; the treatments that they have worked so hard to find, additionally, most likely work for them. It is not your job, whether you are a friend, relative or other person concerned for the PWD’s “well being,” to bombard them with suggestions for different treatments, or push them to “just try” treatments (some of which may even be questionable in their effectiveness). There is a long history of people with mental health conditions, the non-neurotypical, persons with disabilities and chronically ill people being forced into undergoing treatments, into hospitals, and even into institutions by able-bodied people who presume that those with the health problems are not pursuing the “right” kind of treatment, and that this must be corrected—even at the expense of the individual’s humanity. Unless you are a professional, doctor or other specialist working with the person who has one of these conditions, and/or unless the treatment that they are undergoing is actively damaging their health, it is probably best to keep your recommendations about what course of treatment that you think the individual should be undergoing to yourself.
…that you are frustrated by the individual’s inability to “get better.” You may not say or even think this outright, but in some cases, actions speak louder than words.
…that you want to be given cookies/be thrown a parade/told you are fantastic for suggesting something that, in actuality, has probably been suggested to the individual many times before. In its more severe forms, this tendency is known as the “savior” or White Knight complex. Here’s the problem: Disability, chronic illness, mental health conditions, non-neurotypicality and pain, for the most part, are not things that can be cured. They can be dealt with, but it is oftentimes up to the person with the condition—-with appropriate support from family and friends-—to decide which treatments he/she/zie would like to pursue. Though you might like to, you cannot be the affected person’s able-bodied savoir. It is not the job of PWDs/chronically ill people to make you–an able-bodied person–feel better about yourself, whether by following your every treatment-related suggestion, or being uber-thankful whenever you deign to offer well-meaning advice that is related to their condition(s).
In addition, finding the right treatment(s) to improve quality-of-life can be a long, tiring, and agonizing process for many persons with disabilities, chronic illnesses, health conditions, mental health conditions, and neurological conditions. For many, starting an entirely new treatment for their condition(s) would, on some level, entail starting all over again; since getting to the point to where they are able to function and where their quality of life has been improved takes a long time, do you think that many non-able people would want to start from square one again to “just try” a treatment that’s been suggested, offhand, by a “concerned” person in their lives, that might not even work for them—-or that, in some cases, may make them worse? Because of each individual’s limitations when it comes to things such as time, finances, energy, tolerance/intolerance of additional discomfort or pain, or medication/treatment side effects, starting over with a “new” treatment might actually be a huge inconvenience for some people with disabilities, chronic health conditions, non-neurotypicality, or mental health conditions.
An earlier version of this piece was posted at Faces of Fibro on July 6, 2009.
Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.
I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.
You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.
Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.
People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.
I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.
I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”
You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”
Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.
I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.
The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”
Here’s the thing: I don’t have an obligation to tell you what my ability status is.
My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.
Because it is none of their business.
I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.
I also want you to consider that you don’t always know what disability will look like.
You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?
I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.
I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.
Originally published July 2009
The PALS also indicates that Canadian women, 15 year of age and older, experience a higher prevalence of disability at 15.2 percent, than Canadian men at 13.4 percent. In 2006, 19.5 percent of Ontario adult women reported having a disability compared with 16.6 percent of men (Statistics Canada, 2006). Women with disabilities are significantly more likely to experience abuse than non-disabled women. It is estimated that women with disabilities are 1.5 to 10 times more likely to experience violence than non-disabled women, depending on whether they are living in the community or an institution (Public Health Agency of Canada, online).
[From: We Are Visible: Ten Years Later WARNING: PDF]
So.
How many emergency shelters are you aware of that are fully accessible, have a ‘terp available in some way for Deaf women, or provide their information in Braille? Have grip bars in the bathrooms? Have accessible toilets?
How many have funding for all of this?
The last women’s shelter I volunteered in had a disabled-parking zone in front, but that’s all I recall. What about you?
Reading Rights is a US-based advocacy group that is campaigning to have equal access to electric book formats through text-to-speech on the Amazon Kindle. Their campaign is based around the American Author’s Guild demand that people must either prove their disability to the satisfaction of the Guild (and thus give private information over to e-book publishers) or pay extra for the same access to books.
As technology advances and more books move from hard-copy print to electronic formats, people with print disabilities deserve the opportunity to enjoy access to books on an equal basis with those who can read print.
People with print disabilities cannot effectively read print because of a visual, physical, perceptual, developmental, cognitive, or learning disability.
They maintain a news blog that focuses on print disabilities and access to books and textbooks.
Print Disabilities are a very big deal, and affect a large number of people. Text-to-speech capabilities aren’t a convenience, but a way for people with print disabilities to have access to books without waiting for the Book On Tape (or CD, or MP3) to come out. For some, this could “just” be having the latest book by their favourite author when it comes out, for others it could be the difference between passing and failing a university course.
Further Information:
Round Table on Information Access for People with Print Disabilities
(This was originally posted at Hoyden About Town on July 29, 2009, and has been edited for FWD)
I got a scooter just a few months ago. It’s red, and shiny, and its name is Smaug. It’s made my life vastly better. No longer do I struggle to walk the block to school pickup, and I can zip up to post a letter or get some library books or go to a shop without getting into the car then plodding along out of the carpark. My life is still very limited based on inability to cope with sitting up, noises, lights, interactions for any length of time; but the world’s accessibility has still taken a big jump for me.
Within a week or two of getting the scooter, which was within perhaps 2-3 hours of scootertime, I had my first Talking-to-my-companion-and-not-me experience.
It was a couple of weeks ago. The Lad (aged 6) and I were meandering down a suburban footpath on the way back from the postbox. We were chatting and laughing about life, and he was resting his hand on my armrest, which helps stop him getting his feet tangled under my wheels.
A woman was walking by the other way. She looked at the Lad, and said in a sickly sweet voice,
“Oh, you’re a good boy. A good, GOOD boy.”
And kept walking.
…yeah.
I have a longstanding problem with reading any comment threads on posts discussing whether people with mental disabilities should be “allowed” to decide what medication and treatment they want, if they want any at all. The threads usually have one or two comments agreeing with the post, and then quickly devolve into stories from people who knew a mentally ill person once and how disturbing or upsetting or unpleasant it was for them when the person wasn’t on medication. And that pisses me off, because the person who should be centered and prioritized in that discussion is the actual person who is taking the meds, not the people around them.
Don’t get me wrong, I understand that some people with mental disabilities who are not taking medication are unpleasant to be around. I don’t believe that they’re more likely to be dangerous or violent as a general whole, there of course will be people who are, but that’s the tiny minority. I do recognize that some may be verbally or emotionally abusive to their friends and family. I agree that nobody should be forced to endure abuse of any kind, even if it is caused by the abuser’s mental disability. BUT. The fact that some people may be abusive without medication is nowhere near good enough reason to take away any person’s right to determine their own course of treatment. If an individual person becomes abusive or violent or dangerous, that’s a different situation that should be addressed for that individual person. But a blanket decision that everyone with a mental disability must take medication is an overbroad reaction to a relatively infrequent problem that is a huge infringement on the rights and dignity of the person with the mental disability.
So I really hate seeing the families of the person with a disability, rather than the person themselves, centered in discussions about what should happen to or for the person. Given that, I bet you can imagine my reaction when I saw this headline in the New York Times:
For Families of Mentally Ill, Mixed Feelings Over Push Away From Adult Homes
Joe Newell, a police property clerk on Staten Island, would love for his brother, John, to get out of the Coney Island adult home where his television set and other property have mysteriously disappeared. But Mr. Newell remembers how the last time his brother lived on his own, he stopped taking his epilepsy medication and slipped on the ice, slicing open his nose.
Donald Navard, 71, a retired bartender, wants something better than a threadbare life of bedbugs and institutional food for his niece, Dorothy. But he still remembers how she ran away from her last apartment after a week.
And Florence Weil, a longtime activist for the mentally ill, had high hopes for her daughter, Marci Reller, when she was placed in a small group home last summer. Seven days later, Ms. Reller ran away from the home and drank a fatal cocktail of furniture polish and heart pills.
I don’t really want to get into a discussion of whether this is the best outcome for the individuals with disabilities, because I don’t think we have enough information to make that decision. And we don’t have enough information because the article focuses only on the reactions of family members (who clearly are upset about the conditions in the group homes as well). There’s a single quote from a person with a disability, even though, according to the article itself, “Unlike some patients in psychiatric hospitals, residents of adult homes are not considered dangerous to themselves or others. They are generally legally independent adults in charge of their own affairs.”
I’m glad that the families are involved in the lives of the people with disabilities and care for them. I know the help and love of my family and friends were and continue to be essential for me in living with my disability. But I am much more interested in what the people who were living in those homes and now will not be think about the whole situation than their families.
Moderatrix note: This post is the love child of my coming to terms with a need and actual want of pills.
When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug. Or, they will insist that we are just addicts who refuse to find ways to manage our pain.
And for some of us it is a type of shaming that is hard to get out of our heads. For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them. It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.
I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care. It was incredible and refreshing. She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back. That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications. She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s. This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors. Continue reading Where I jump in and defend pills…