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…]]>
Q. Grandmother’s Obsession With Weight: My daughter is a recent grad of a top 3 in the country school. She’s kind, pretty, has friends and is employed, going back to grad school. She’s a former college athlete but since school, has put on a huge amount of weight. While it’s a less than ideal situation, she’s seeking help for it. The issue is Grandmother. She’s old-school, from a certain area of the country that values looks and femininity trumps all, especially weight. She’s not at all slim herself, her kids have had eating disorders and her husband has been grossly obese for as long as I’ve known them. She’s terrible to my daughter and what she doesn’t say outright, she implies. My husband’s attempted many times to talk to her, but to no avail. We try to avoid seeing them, but during the holidays, it’ll be difficult. She always has the last word. Is there a polite way to shut her down? Sincerely, not a Belle.
I note two things about this article:
One, the grandmother is definitely behaving inappropriately and I think it’s good that the letter writer is asking for advice on how to handle the situation. I suspect the letter resonated with a lot of readers because this tends to be a time of year when these kinds of things start coming up a lot and having a little library of sharp reports to draw upon can be useful for navigating unpleasant social situations.
Two, the letter writer has got some fat hatred to deal with. Despite being disparaging about how the grandmother views weight, suggesting that grandmother’s ideas aren’t shared, the letter writer makes sure to mention that grandfather is ‘grossly obese,’ and that gaining weight after stopping high energy college athletics is ‘a less than ideal situation1.’ The letter writer notes that the grandmother is ‘not at all slim,’ evidence that she, of course, would have no room to talk, and the letter leads right there with that damning one-two punch that gets thrown at fat people: well, you’re fat, but at least you’re ‘pretty’ and ‘kind.’ And ‘have friends’ despite the fact that you’re fat! Gosh, it’s almost like fat people are human beings.
Here’s what Prudence said in response:
A: Your daughter is an adult so she’s the one who needs to handle this situation. You can have a talk with your daughter and say that you dread hearing her grandmother’s nasty remarks and you want her to be ready to parry them. “Thank you” is an all-purpose non sequitur. Your daughter can also be more direct: “It’s good to see you Grandma. You’ve expressed your feelings about my weight many times, so I know how you feel. I’d like to enjoy the holiday, so I’d appreciate it if we don’t discuss this anymore.” If grandmother won’t stop, your daughter just needs to say, “Good to talk to you. Excuse me, I’m going to see Uncle Ed.”
Prudence covered the first topic with some pretty solid advice. But she didn’t touch the second. Was it a good move?
I think there’s a solid argument to be made for covering the question ostensibly being asked in the letter and focusing on the issue of making the daughter feel more comfortable at family gatherings while choosing to elide the letter writer’s own embedded bigotry, with the goal of not alienating the letter writer and making sure the advice gets where it needs to go. On the other hand, though, what is the daughter internalising at home around the letter writer, and how are comments made by the letter writer contributing to the distress she experiences as a result of family pressure about her weight?
But I’m not sure the logic here is that complex; I honestly suspect those snide comments slid right past Prudence when she was drafting her response, because they’re a reflection of attitudes that are so common, so widespread, so ubiquitous, that they don’t even attract attention unless you’re specifically looking for them. They just pop right past.
Yes, that’s me, looking for something to get offended about. No, really, I think that these kind of dogwhistles and codewords are evidence of the uphill struggle we have when it comes to fighting social attitudes. This is a situation where the letter writer could have used some advice too, and didn’t get it.
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 began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty. When I complained, the doctor would usually laugh and attribute my complaints to growing pains. I was told many times by family members and medical professionals to grow up and to stop complaining. So, I did. For a decade.
Fast forward to now, and I am once again vocal about my experiences. This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial. I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms. I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking. He has adapted admirably to “physical contact rules” that change daily. He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood. He helps me with whatever tasks I cannot accomplish on a given day. In short, he is a wonderful spouse helping me through a very rough adjustment period. The rest of my family, however, is problematic.
When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me. This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences. So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.
Unfortunately, this attempt was unsuccessful. Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc. Things got bad enough that I attempted suicide in September. It felt like I was not only losing my physical and mental functions, but my family as well. Nothing I tried was working, and it seemed that there was no way out.
After the suicide attempt, I turned off my phone for a week. The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault. My sister’s 6-year-old son happened to be present, so I got to talk to him, as well. My nephew noted that it had been a long time since we had talked. I replied that I was sick and needed to turn my phone off for a while. My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better. At school, I got a dinosaur, and…”
Why can’t the adults in my life figure that out? Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus? Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am. And, given the amount of frustration my illness itself causes me, that’s saying something.
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?]]>
Dear Abby: My oldest granddaughter, “Allie,” is a psychiatrist. I have always loved her, been proud of her accomplishments and have had a warm relationship with her.
Her mother—my daughter—got drunk and made several angry, harsh phone calls to Allie. Since then, Allie has refused contact with everyone in the family. I have written to her numerous times and so has my daughter, begging for forgiveness. My daughter has quit drinking, thanks to the patience and loving support of my family. She has also come out of an abusive marriage.
Allie gave birth to a baby girl last year. I have never seen my great-grandchild and it breaks my heart. Abby, what can I do to restore a good relationship with my granddaughter? I love her and pray for her every day.
I must say, I dreaded Abby’s response to this letter, given that it painted a tragic tale of family torn asunder, a mother trying to reform herself, and saddened grandmas. I’ve had to cut off family members for my own health and protection, and it wouldn’t surprise me to learn that some FWD readers have had to do the same, for a wide variety of reasons. So I was expecting a lecture about how Allie ‘owes’ her family something and the grandmother should continue trying to pressure her into repairing the family’s relationship.
Here’s what Abby said:
Dear Grieving Grandma: As your letter proves, being a mental health professional does not exempt someone from having family problems. Depending upon what your daughter said to Allie, it is understandable that she might want to protect herself—and her baby—from her verbally abusive, alcoholic parent. While it may be harsh for Allie to have cut off contact with all of her maternal relatives, including you, she may have done so to prevent you from trying to pressure her to “forgive” her mother for what has been an ongoing pattern of behavior.
Write Allie one more letter advising her that her mother is no longer drinking and has left her abusive marriage. Continue loving and praying for her. But until your granddaughter decides on her own to relent, there is nothing you can do to “fix” this. I’m sorry.
Abby, I want to hug you and hand you a cupcake. This advice is right on. She reiterates that Allie may have been entirely justified in making her decision. Reading between the lines, Abby seems to be gently suggesting that Grandma should not have ‘written her numerous times’ and should have instead given her some space. The letter concludes by giving her permission to try one more time, something I personally feel iffy about, but, in the end, it reiterates that this is up to Allie, not the family, and that Grandma is just going to have to accept that.
Yes, Abby, yes. People who choose to cut off their family members do not do so on a whim. They do so to protect themselves. The last thing that people who make that choice want is badgering from other people in the family, or from family friends. They want to be left alone, and they want their choices respected.
Unfortunately, when these situations happen, many people often take it upon themselves to ‘fix’ them. As a result, people are forced not only to cut off the offending individuals, but the entire family, because they fear exactly this situation, people demanding to play a role in ‘reconciliation.’ In these situations, the offender is often painted as the injured party, and no one talks about the isolation experienced by the person who has to cut people off. If these decisions could be made and respected, people like Allie wouldn’t have to cut off contact with family members they may love very much.
You are allowed to protect yourself by choosing the people you associate with, including your family members, and you are allowed to not have this turned into a big drama with people insisting on getting involved left and right. You have the right to autonomy over your body and in your relationships, and it’s nice to see Abby stating that, albeit in somewhat less aggressive terms than I would have!]]>
This week, a high school student writes about a problem she’s experiencing at home:
Dear Amy: I’m a high school student and feel like I am being verbally abused by my brother, who constantly tells me that I don’t do things right.
For example, he criticizes me for not putting dishes away after I am done with them.
Whenever he criticizes me, he says things like, “You’re lazy.” Or he’ll say, “If you continue to make these choices then you probably won’t have the greatest path you can have in life.”
Whenever we get into an argument, he says he’s smarter than I am because I have a GPA of 3.85 and his is 4.3 (he’s taken AP classes).
His words hurt me and my self-esteem suffers, even if I know he doesn’t really mean it. I do believe he loves me for who I am, but this bothers me.
I don’t know how to handle this problem.
— Hurt Sister
Let’s be clear here. Hurt Sister is saying that what her brother is doing is actively hurting her. She cites that it’s a blow to her self esteem, and it makes her feel bad. She’s writing to ask for help. It’s worth noting that all over the world, every single day, people experiencing verbal abuse cry out for help, and they often get responses exactly like Amy’s:
Dear Hurt: A big brother riding you about not cleaning up the kitchen, or saying he’s smarter than you, is not verbal abuse.
People have different qualities, strengths and weaknesses. Your brother might have a better GPA, but you might be a compassionate friend (he sounds lacking in the compassion department). He might be good at chemistry but you might be good at languages, art or geometry. Your GPA would put you at the tippy top in my household (and most households).
Words do hurt. But they hurt less if you make a healthy choice to let the stuff roll off you that you know isn’t true. Your parents should nip this in the bud, but you shouldn’t leave your brother in charge of your self-esteem.
Evidently you never learned the comeback to petty sibling badmouthing. The next time he calls you lazy or dumb, you say, “I know you are, but what am I?”
All together now: Wrong! You know what is verbal abuse? Something that someone identifies as abuse because that person is experiencing it. There are definitely degrees of verbal abuse, but they are all abusive. This is a short letter. We don’t know all the details. But it seems to me, reading between the lines, that her brother is constantly hounding her, is constantly making her feel small and worthless, is constantly saying that he is better than her, is constantly reminding her that she is ‘not doing things right’ and, you know what? That can become highly abusive when you are hearing it over and over.
Especially if you are aware of how it is impacting the way you feel about yourself. Hurt Sister is not writing in to say ‘this is annoying and it bugs me,’ she is writing to say this hurts me and I want it to stop.
Amy’s response is the equivalent of the old ‘sticks and stones will break my bones, but words will never hurt me’ adage, with a side of ‘you shouldn’t let the things that other people say about you affect you.’ Well, guess what. Words hurt people. The things that people say about (and to) you affect you, whether you like it or not. It’s not always possible to make a ‘healthy choice’ to ignore verbal abuse, especially when you are a high school student, in your own home, a place that should be safe, and your family member is subjecting you to it.
Contrast this letter with this week’s Dear Prudence, where a reader writes in about being increasingly afraid of her husband because of verbal abuse and acts of violence. Here’s what Prudie said:
There is no excuse for the kind of assault he is inflicting on you…He sounds potentially dangerous, and just an arm adjustment away from punching your jaw instead of the wall. Stop apologizing and start packing. You may even need someone to accompany you when you get your things and tell him you will no longer live in fear in your own home…Nice line he spewed about not faulting him for your faults. Now he can contemplate how it’s his fault that your marriage is about to come apart.
Verbal abuse is abuse. It’s abusive and it’s hurtful and, as Prudence points out, it can escalate to physical violence. I’m not saying that Hurt Sister is in physical danger from her brother, but I am saying that her feeling, that this is abuse, is valid, because she is experiencing it, and Amy should have recognised that and provided her with some assistance on addressing it, instead of telling her, basically, to toughen up.
There’s a prevailing and extremely dangerous attitude that verbal abuse isn’t ‘real’ abuse, despite ample evidence to the contrary. That attitude manifests in the way that people at all levels deal with abuse, from teachers handling bullying to human resource directors in offices with hostile work environments. If an abuser uses words alone to harm people, that abuser is far more likely to get away with it, and the responsibility for dealing with it will be placed solely on the victim. It’s the victim’s fault for being ‘too sensitive’ and not ‘toughening up.’
I’d hazard that a fair number of FWD readers have probably experienced verbal abuse at some point in their lives, and may even be experiencing it now. How many people are told ‘just toughen up’ or ‘just ignore it’?
Yeah, that’s what I thought.
Suggestions for Dear Imprudence features are always welcome in my inbox! (meloukhia at gmail dot com)]]>
Dear Miss Manners:
My brother served in Iraq a couple of years ago. He suffers from PTSD and was wounded. The physical wound is not one you can see, but people (family especially) will still ask him what it was like to fight in the war and even go so far as to ask if he killed anyone.
It never ceases to amaze me the way that people feel entitled to information about other people. They love to ask questions about your disability, and when a person happens to be a veteran and has seen combat, one of the first questions that comes up, almost without fail (unless that inquiring person happens to be a veteran or the family member/close friend of a veteran), is whether or not that particular veteran has killed some body.
Have you ever killed anyone?
I just can not fathom having to live with the reality of having lived through that burden, let alone having to deal w/ having to relive any of the emotions attached to that each time a thoughtless person asks “Have you ever killed anyone?”.
The letter writer wants to avoid having to stay away from a family function to keep zir brother safe from such carelessness from other family members, and honestly that breaks my heart. A PWD should not have to completely cut themselves off from friends, family, and other outside contacts to avoid triggering situations, but the reality is, this is overwhelmingly the way that it usually works.
I know for a fact that there are many veterans living in isolation because of PTSD, and yes, several of them are women, because of people who aren’t veterans, who can’t grasp what that must have been like (and not even all of us, as veterans can know what that is like), who can’t abstain from getting too nosy and triggering their PTSD. Why can’t we just have the same conversations as everyone else? Not everything in our lives revolves around our disabilities and our experiences in The Sandbox. Not everything is about the worst thing that has ever happened to us.
I like the way Miss Manners answers this letter:
Can you do this without creating consternation and even more curiosity about his condition?
She cautions the letter writer to caution the family to avoid the topic of war without creating a more awkward situation that might cause the family to avoid zir brother as if he is a ticking time bomb.
[He] will probably tell us about the war eventually, but right now it’s his least favorite topic, and I know he’d appreciate our staying off the subject.
This is the perfect way to describe this.
This is the 60th anniversary of the Korean War, the Forgotten War, many call it. My grandfather is a proud veteran and a Purple Heart recipient. He didn’t like to talk about the war with us, even when I was a shining eyed, curious young girl, who was almost never denied anything she asked of her grandfather. It was painful for him to remember, and the only time I ever saw him reminisce was when we traveled to Des Moines for his unit’s reunion many years ago.
But after I joined the Navy he sent me a letter at my A-School sharing a moment of understanding for what I was doing, and later, when my partner and I PSC-ed to Korea, he sat and talked to us for hours about what he remembered of the country. He told us harsh and sometimes beautiful stories of his memories. He told his of his marching from Pusan all the way to far North, of being picked up by Navy ships, transported back to Pusan and doing it again, after salvaging boots from the dead to cover their own bleeding feet. He tells it better, and I hope to get it recorded the next time I see him. But he told it to us in his own time, when it didn’t hurt him anymore.
I remember when The Kid’s Tae Kwon Do instructor told us of his memory of being a child during the war. A child in her class said that he was too young to do something or another well. The Master told us a story, of being eight, and of being held by his mother in a drainage tunnel and being told to not make a sound while North Korean soldiers ran over head. He was able to barely breathe, soundlessly, and stand against the side, like you see in movies, as they flashed their lights looking for people. He shared that story with us freely, and I remember the look on his face, as if he could still feel the chills of fear, like he was back there for a moment, but stronger now, sixty years later.
We have no right to ask them to regale us with the details of the horrible things they had to do to get by, to make a living for their families, to live, all because they were told it was the right thing to do. Or because they had to survive. They had a moment to think, but they have a lifetime to live with that decision.
People who live through wars will tell their stories when they are ready, because the pain will give them a moment of release, it will subside for a moment, or forget to pound them with the aggressive flashback or terror.
We, as people who have never lived through that, have no right to inflict that upon them.]]>
Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.
There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.
I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).
So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?]]>
I feel pretty safe in saying that most people who are born with disabilities, or develop a disability very early in life, have experienced the Pressure To Appear Normal. The ones I have talked to have told me that the greatest amount of pressure to Appear Normal has come, either directly or indirectly, from their parents.
In my case, I remember being yelled at by my father after my parents, unaware of how unwell I was, and still am, read the diary I was required to keep at school. Finding out how unhappy I was that way made my mother cry. After that, I only wrote fictional stories in my required-diary at school. I didn’t want to upset my parents by being “sad”. [My parents may have a different understanding of this event. I’ve never talked to them about it. I also haven’t talked to them about my repeated hospitalizations.]
It took me a long time to convince Don that it was okay to talk about being in pain and how he felt about everything. Like me, his previous attempts to talk about his disability led to his mother being upset. His attempts to appear normal means he went over a decade needing far more assistance than he was getting. He felt like a failure for getting a cane, because everyone would “know” he was disabled. Getting the cane, and now his wheelchair, has led to a drastic improvement to his quality of life – and it didn’t happen until he was in his late 20s.
If you read many of the Very Special Lessons-type news media stories about disability, they will often include a paragraph about how the person with a disability’s parents had at some point pushed for them to be in a “regular” school until, giving up, they finally admitted their child needed more help than they were able to get there. It’s often presented as a sadness, that this child couldn’t “overcome”.
From Deaf children being denied Sign Language until their late teens to grandparents refusing to be seen in public with their autistic grandchildren until they can learn to behave, there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.
I hope my last post made it clear that I’m very sympathetic to the situation parents find themselves in. There are simply not enough resources available to help families. There is constant pressure on parents to explain how they “made” their kids disabled, and what they’re doing to “fix it”. I don’t just think that pressure is there. I know it. I know for certain that Don’s mother still feels guilty for “making” Don disabled.
But children are very aware of the pressure to be normal. And when people like Jenny McCarthy and her ilk push “cures” for disability out there, not only are parents asked why they aren’t administering these cures, children are, either directly or indirectly, asked why they aren’t cured, too.
“Why are you still disabled when your disability is curable?”
“What are you doing to make yourself better?”
Try harder. Do more. It will make everyone else feel more comfortable.]]>