Category Archives: life changes
A whole lot of people are celebrating holidays right now, and it seems like the holiday season is a source of stress for many of those people, particularly people with disabilities. Stress about attending family events and dealing with judginess or inaccessible houses. Stress about being required to go to holiday parties for work. Stress about being forced to observe religious traditions you don’t follow in the interests of not causing ‘a scene.’ Stress about hosting events and cooking and making sure everyone’s happy. Stress about buying presents. I see the stress everywhere; everyone I talk to is unhappy, everything in my RSS is exploding with holiday-related stress, and it seems more like the season of misery than cheer for a lot of people.
Maybe that’s not the case for you! Which is awesome. If you love the holidays and look forward to every single aspect and are just bursting with excitement, well, you might not like this next part very much: I don’t celebrate the holidays. I don’t buy presents, I don’t send cards, I don’t put up ornaments, I don’t attend parties, I don’t cook mammoth amounts of food, I don’t travel to be with family. This is in part because I’m not religious; we celebrated Christmas when I was a kid but it was purely secular and as soon as I grew old enough not to resent the fact that everyone around me was getting presents, we stopped. The last holiday event I attended was a Passover Seder a bunch of friends hold every year.
But it’s also because I hate social gatherings, I hate the fraught social minefield of handling cards and presents and things, I can’t deal with large crowds of people and Smells and all of the things that are usually present. So I pretty much check out during the month of December, when the United States is caught in a flurry of Christmas, 100%, all the time. People seem shocked and horrified that I don’t celebrate even a little.
And, you know, a lot of people seem to view me with pity when they find out I don’t have plans for Christmas dinner or what have you. They seem to think that I must be really sad about this, about ‘not having anyone to celebrate with,’ and I’m usually deluged in invites to attend events, which I politely turn down. It was only very recently that I realised very few people are willing to come out and say something I think is pretty important:
It’s okay not to holiday.
If you don’t want to celebrate at all, for whatever reason, that is okay. It’s also perfectly okay to decide that you want to limit what you do during the holidays, again, for whatever reason. Maybe you have limited energy and you want to budget it to do something you care about, like lighting the Yule Log, and you’d like to politely turn down things that will be drains on your energy. Maybe you just plain don’t want to go to the holiday party where everyone will stand around drunk and talk in increasingly loud voices about nothing in particular. Maybe the thought of dealing with family makes your hair change texture and you really just want to spend a few quiet days at home, perhaps alone, maybe with partners or friends. Whatever. It’s okay.
You don’t need my permission for any of those things, of course. But I know that sometimes I find it helpful to be reminded that it is actually okay to take care of myself. I can request or refuse things and not explain them. I can make choices designed to protect myself, whether it’s from really indifferently cooked turkey or from relatives I can’t stand being around. And you can do that too; you don’t owe anyone your time, or your energy, or anything else.
Writing in November, I talked about the pressures many people experience around food and the holidays:
It’s hard, I know. There is no one easy solution; not all of us have the choice to opt out of obligations, not all of us can speak up at the table, not all of us have a choice about where we eat and when and how and what is in front of us. There may only be small, small things you can do to assert your space and your right to exist, and I’m not going to tell you what you should or shouldn’t do. I’m not going to say ‘just don’t go to holiday dinner if you don’t want to’ because I know it’s not that easy, and I know you’re a grownup, and you can make that choice if you want to. But I am here to tell you that I support you in whatever choice you make, in any choice you can make that will increase your happiness levels at a time of year when things are often grim.
You are allowed to do whatever small things you need to do to make the holidays, whether you celebrate or not, easier for you. That might be politely suggesting that you cannot host the family holiday party this year even though you really want to because it eats a lot of energy. It might be offering an alternative to something you cannot or do not want to do; ‘gosh, I would love to attend dinner at your house but I think it will be a little overwhelming, why don’t just you and I go out for lunch the day before to catch up?’ It might be asking your family to please respect the fact that your identity is not up for debate or discussion. Whatever small or large action you decide to take, remember that you, too, are a human being with boundaries and limits and that you deserve to be treated with respect.
I received a message on Facebook today (my personal account, not FWD/Forward’s account, which is not currently being updated because *ahem* Facebook seems to refuse to fix their blog importing tool and I can’t keep up with manually posting it every day…but I plan to try… /Facebookrant). It was one of those “fun meme” invitations, asking me to participate.
“Change your profile picture!” it said, “For Veteran’s Day, it would be great if we all changed our profile pictures to a picture of a veteran!”
How odd…said I. I haven’t changed my profile picture in almost a year…
It continued: “It doesn’t have to be a picture of your husband! Just any picture of anyone who has or is currently serving would be great, and a great way to honor our veterans!”
I might have just deleted it except for that last part. It doesn’t have to be a picture of your husband…
I think about how many times I would attempt to do anything official on the phone, and would asked for my husband’s social, instead of the sponsor’s (that is military speak for the military member who sponsors the dependents for benefits).
I think about how many times I would pick my kid up from daycare after PT, in my full Navy PT gear, and someone would ask me if my husband was in the Navy.
Mostly, I think about the way that the VA is still scurrying to keep up with the care that women veterans need. Some put the number from Iraq and Afghanistan alone at 200,000 active duty women, excluding National Guard and reservists. Women are left behind, with no resources, or resources scattered so far and away that they are inaccessible to those who need them most.
Which is why pieces like this one from NPR kind of really irk me, when they seem to mislead broad audiences. Somehow trying to imply that that the VA is some kind of miracle worker, reaching out to every woman veteran who is in need of services, and that they are meeting the diverse needs of women veterans. It is putting up a lovely window dressing on a filthy, dirt covered window, making sure enough of the filth is smeared out of the way so you can see a very narrowed scope of things from your apartment. The fact is they are hardly meeting the needs of their male veterans, in the ways of mental health, or meeting needs in a timely manner at all. Women veterans, however, are not having their needs met. They are missing the same marks with women, but completely whiffing on things like women-specific health, military sexual trauma, and accessible centers. We could ask Ruth Moss about all the extra ways they failed her, or the homeless women veterans with children who have no where to turn because the closest facility that can help them is a thousand miles away, and usually isn’t run by the VA anyhow.
Today I went to a Veteran’s Day Ceremony here on our base. I won’t go into details about how the President — who is here in Korea — was supposed to be there, or how they changed it at the last moment. I watched as VFW representative,s dressed in their various hats, went around and thanked the collected men in uniform in attendance. I stood there, a (friend’s) baby strapped to my chest, while my daughter, in her Brownie uniform, handed out programs to the guests.
I was just another wife, with a gaggle of girls around me. Taking up space, snapping pictures, getting in the way. It never occurs to anyone that the passel of wives standing around may also have served a purpose in the peace that is being observed. We are unremarkable, though something to be glared at if our baby starts crying while the General is speaking.
The VA is not making progress towards addressing the needs of women. And they won’t because our society doesn’t recognize us. Women — wives — are mutually exclusive from veterans and servicemembers.
We are invisible. It’s like we don’t exist.
I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.
Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?
One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.
I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.
We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.
These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?
Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?
How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?
[Warning for somewhat graphic discussion of medical procedures and adverse allergic reactions.]
I have been dealing with weird, severe, and inexplicable allergic reactions since the age of 14.
Most of these reactions have been to food items; my known food allergies include peanuts, various tree nuts, and (wait for it) green bell peppers. Of course, I take great caution to avoid these foods and my exposure to them. Unfortunately, with my immune system, such caution is no guarantee that I won’t have an “attack” out of the blue.
The first “attack” I had, in fact, was one of those not caused by food. I was a teenager at the time, in Paris on vacation with my family. I don’t remember much about my initial symptoms other than I felt overly-warm very suddenly, and decided that it would be a good idea to take a cold bath in order to rectify the situation. My mom found me in the bathroom of our rented apartment, facedown on the tile floor and missing several items of clothing. I had figured, somehow, that putting my face on the tile floor as a method of cooling down would look less weird than sticking my entire head into the freezer. My face, which had initially turned bright red, swelled up so much that I soon found myself unable to see. I had quickly begun to resemble the Bob’s Big Boy logo; I should note here that if you ever start to resemble a famous food-related logo, you should probably go to the nearest hospital post-haste.
My Bob’s Big Boy transformation was quickly followed by giant, blotchy pink hives that appeared on my neck and shoulders. Joining the party somewhat late was a hot, almost volcanic feeling in my lungs that quickly morphed into breathing trouble. Severe breathing trouble. So my family (my mom, my dad, and my younger brother — who suggested that I not look at myself in any reflective surface so as not to become more freaked out) and I took to the streets of Paris in search of a hospital. We found one — after a quick visit to what we thought was a hospital but which actually turned out to be a convalescent home. At the ER, the staff took one look at me and immediately put me at the front of the queue; I was quickly whisked away to a magical land where a nurse tried to calm me down, completely in French, when I loudly protested the insertion of a large IV needle into the underside of my forearm. The only English-speaking doctor on staff, as it turned out, was on his day off, but came in to examine me and assure my family that I was going to be okay.
When we came back from vacation, I had another attack about a month later. And then another. And a few more, until one ER doctor suggested that I get a full round of allergy tests, more commonly known as “scratch tests.” The scratch tests revealed a substantial peanut and tree nut allergy. I took care to avoid these foods, or any foods that may have come into contact with them. Unfortunately, I still kept having attacks, even when I avoided the dreaded peanuts and tree nuts. I still have them, approximately once every 3-4 months.
Sometimes, I get them as a result of cross-contamination if I eat at a restaurant. Sometimes, I get them for no reason at all — even if I haven’t eaten for a while. The symptoms tend to be fairly consistent: first, a scratchy feeling will start in my throat and lungs, followed by wheezing. Then comes breathing trouble, which tends to feel like an elephant is standing on my chest. Usually, my eyes will then swell up to the point that I cannot open them all the way, or see. Sometimes, I get gastrointestinal trouble as well, the symptoms and signs of which are not things that I can discuss in polite company due to general grossness and/or TMI.
The first five to ten minutes of these attacks are, generally speaking, the worst part(s). By now, my battle plan for dealing with these attacks is well-established: Take a shot or two of my inhaler at the first signs of trouble (usually breathing difficulties plus another symptom), then four or five antihistamine pills. Of course, it takes a few minutes for these things to kick in, which is part of why the “waiting” part is so physically painful. During these first few minutes, I am in some sort of hellish allergy-limbo: it feels like someone or something has put some bricks on my chest and torso, I can’t see or can barely see, and it feels like my intestines are being vacuumed out of me — and the only thing I can do is wait for the medication to start working. I generally consider myself to be a patient person, but nothing will sap your patience like having to wait out a potentially life-threatening medical emergency.
And if that doesn’t work, I have to go to the next level, which is using epipenephrine, a self-contained steroid shot to be injected into the thigh in case my breathing is so severely compromised that I pass out or am in danger of not getting enough air into my lungs.
For these sorts of attacks, there is really no pat, inspirational or life-affirming end, so much as a screeching halt after the medication actually starts working. And this total lack of inspiration or an end in sight is also reflected in some of the responses I have gotten from many abled people in regards to my “allergy issues” (to be addressed in part two).
Today, September 10th, is World Suicide Prevention Day.
Being suicidal, especially if you have long-term thoughts about suicide and suicide ideation, can be a very isolating and lonely experience. Do you tell your friends and family? If you do, how will they react? What about your job? Will you be forcedly committed into psychiatric care? Will people assume that if you haven’t actually harmed yourself, you’re not really suicidal and just faking it for “attention”? If you’re happy and having a good time today, does that mean you’re not really suicidal at all? What exactly do you say, and who do you say it to?
These are the things I wish I could tell you:
Be as kind to yourself as you can. If you are having long-term suicidal thoughts, you are ill. You are not weak, you are not failing, you are not letting anyone down. You are sick, and just like if you had a bad cold, or some sort of infections, you need to take care of yourself, and let your body and your mind recover.
There is not a quick fix. Talking to a friend, or a professional, or a help line, taking medication, spending some time in short or long term care, these are all helpful but take take time, something you can take as much of as you need. I wish I could promise you that talking to someone would force your mind and your body to heal, but it won’t. This is not because you’re a failure, but because you are ill, and again, you need to give yourself time, because you are not a failure, and you are not letting anyone down.
You do not have to be perfect. Just like someone with a cold or an infection may skip their cold medication or their antibiotics, and as a result may get sicker or set back their recovery, you too can end up screwing something up. This does not make you a failure, and you have not let anyone down. You are still worthy of getting the help you need, and you can still reach out to people who want to help you. Again, there is no quick fix, and you are allowed to make mistakes.
I cannot promise you that everyone around you will be accepting. It is not unusual in my travels through the internet to find people writing about how people who attempt or commit suicide are “selfish” or “bad”. These people are wrong. You are ill, and that is not the same thing at all. But there are people who are trained to help you, and are willing to help you in the road to recovery, no matter how hard or how long it is. Some of these people will be strangers, and some of them will be friends or loved ones. I know it’s socially isolating and scary, but please try and reach out, because they want to help you. Here is a small list of resources that may be helpful to you.
Your pain, and how you feel, it is all real. You are allowed to feel these things. You are allowed to be who you are. None of this makes you bad, or undeserving, or unlovable.
I hope you find what you need.
People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.
Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.
But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.
These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.1
At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.
I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.
As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!
I think there’s so much here to talk about. Please, tell me your thoughts.
- The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them. ↩
Jesse the K hopes you can take a disabled feminist to tea this month.
I’d hoped to have a delicious thinky post about the difference 20 years of the Americans with Disabilities Act has made for the world, the nation, the state, and me. Meditating on those topics proved so depressing I didn’t even leave the house yesterday. Ha! Depression is the gift that keeps on stepping on my toes.
So: the ADA and what it enabled today. In my zippity, comfortable power chair I zoomed to a “regular” bus stop and thence to my accessible health club where I swam for 40 minutes. I used half of the seated showers (what the staff insist on calling the “handicapped stalls.”) Most of the people I encountered treated me respectfully and without patronizing me. I saw at least 10 other people whose impairments were readily evident to me. Another bus to the next stop. I had no worries about crossing a six-lane 45mph road because my chair goes fast enough (but not, alas 45mph). There were curb ramps which almost met ADA specs almost all the places there should have been — the speedy chair simplifies crossing the street via driveways when necessary. I stopped in three stores during these errands. At one store the counterperson dramatically jumped back and performed the Vanna White maneuver to demonstrate that there was room to move in the shop. (Oh really?) The other stores gave me exactly the same attention as the evidently enabled* people who entered at the same time.
OK, that’s all about assistive technology, and there’s more AT-related items I could enumerate (built-in enlarging features in apps and OS simplify computer use; cordless phones; I’m stopping now).
The biggest change has not been in my body but in my perspective. In the late 80s, I’d been educating myself on social-model, disability-rights reading, but my impairments were not yet evident to others. That disabled people’s rights had been enshrined in law was hugely important to me. That the ADA used “mental illness” as an example finally tipped me into considering therapy.
So, thanks for my life, ADA: many mundane things, and a few great big ones.
The law is not enough; as Cal Montgomery taught me:
Discrimination is always illegal; only activism makes it unwise.
So thanks to these real-world colleagues and teachers, who enabled me to learn advocacy:
- Caryn Navy, who was infinitely patient with my AB privilege, remade a corner of the world at Raised Dot Computing, and demonstrated dignity through snark
- Chris Kingslow, who taught me that mental illness isn’t the end of the world
- Catherine Odette, who published Dykes Disabilities & Stuff, founded Able Lives Theater, and gave me permission to take as long as it takes
- Cal Montgomery, who decoded the disability studies stuff I couldn’t follow, made me laugh, and taught me that there is dignity in “behavior management,” as well as potential for abuse
- Mike O’Connor, who held my hand while I took my first steps into the public square
- Fayth Kail, who cranked open many minds as she served as an Assembly page in the state legislature while also campaigning for abortion rights, reminding me that advocacy has a life cycle
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