Here’s some nostalgia for ya, gentle readers!
My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.
I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.
Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):
Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support him—his own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?
Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!
Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.
Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.
Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.
Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):
A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.
You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.
I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.
Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.
But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.
I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.
Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.
Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.
Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.
Dear Prudish,
wrt your question: “If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries.” I can only offer my own take on it. I can fuck like I have a Doctorate in it, I can shop like a pro, and I play a mean game of Plants Vs Zombies. None of these things mean I can stand up to cook a meal, vacuum the carpets, or work even part-time. If our good friend Reston’s brother goes to bars like the ones I’m familiar with, then there’ll be somewhere for him to sit. A ‘date’ could be anything from a fancy meal to a quick shag on the couch. None of these things are inherently taxing for short periods of time, but I doubt he has the strength to do any of them 24/7. Also, being able to eat, or talk, or fuck are rarely job qualifications on their own merits.
Reston – I’m sorry your brother isn’t a ‘good crip’, and that he doesn’t spend enough time weeping about his misery for you to feel justified about your own decisions in life. It’s understandable that you’d feel jealousy – he has free time and money, you don’t. He has a busy social life, you apparently don’t. But you have your health, you had the ability to choose what direction you wanted your life to go in, and you chose it. Nobody forced you to get married, take out a mortgage, buy cars, and have kids, I doubt if anyone’s forcing your family to look after your brother either. He hasn’t made a lifestyle choice here, he’s having fun when he can and not hurting anyone. He didn’t choose to be ill.
If you feel like you’re drowning in financial worries and responsibility then ask your family for help, work on ways to reduce your debt, but don’t expect that you can make your own candle burn brighter by blowing out your brother’s. That won’t work. You have to put on the big girl pants and ask for help, instead of crying “Look at me, I did it all on my own without help. I might be suffering but at least I have my pride!” Pride isn’t worth shit if you hate your life, resent your kids, and are seeking attention by directing your anger at your brother.
No love,
Px.
So often, as disabled people, we only get credibility for being victims. If we’re completely isolated and miserable, then we’re really disabled. But then, of course, we’re despised for being victims. Given the choice, I’ll take empowerment, thanks. If someone is going to despise me, let it be for being an uppity autistic rather than a victimized one.
Much like the disabled man in the letter, I keep getting told by certain folks that I’m not really disabled/autistic because I have a husband, a daughter, empathy, happiness, whatever. And if I try to explain (always a bad idea) that I managed to attain all those things starting from a place of childhood abuse and utter social confusion and sensory overload and all the goodies that come with autism, without any support or intervention at all, it avails me nothing. I just lose more points, because it couldn’t have been so hard if I’m where I am now! Of course, if I were unable to live “independently” (like anyone actually does that), I’d have people talking about what a waste of space I am.
Regarding being a “productive member of society,” I recently read a comment on another blog by the parent of autistic girl, in which he said that he wants a cure for autism so that his daughter can become a “responsible, tax-paying citizen.” Yikes.
My uncle told me that if I could ride the bus (and explore Vancouver, oh public transportation how I love thee), I could go to class.
I got this a lot this summer from both my mom and my sister. My mom often made no sense – “File for disability!” “Ok.” ::a month later:: “You should apply for a job.” Even my sister knew that was counter-intuitive!
But my sister! “Why don’t you drive?” I get it, we live in a very pedestrian unfriendly area. I understand it has brought you freedom, but it’s not for me. She also spent this summer talking about her plans for the semester and how “everyone” does this by a certain time.
But now? I’m at home for the semester, I’m officially lazy and a layabout, contributing nothing to society. And everyone thinks it’s good, because a doctor told me to do it.
Oy. (Gentile expressions just don’t match the emotion in oy.)
Ugh. My husband has band practice twice a week in the comfort if his own home, ergo, he must be able to work a full time job, right. The fact that I can walk one block to the dunkin donuts means that I can endure two hours at walmart.
Because apples are oranges are peaches are pears.
I was the child that always got more attention from my parents than my sister. Not only did this come with disabilities, but it camewith a lot of the very negatieve attention parents can give their children (ie. emotional and physical hurting).
Later, I became the adult who could do X but not Y. I was reprimanded a lot for this by both parents and professionals. Now, I’m the adult who dares to have a social life while not doing her groceries, and thank goodness I’m not resented for it as much.
Aye, I can relate to this. As an autistic woman it’s terribly frustrating when people, especially my parents, assume that just because I’m able to handle the routine of classes and conceptualize complex ideas that I’m able to do things like plan meals, recall what I’ve been told to do, remember to take my medications (speaking of), perform certain housework without support, remember to shower, actively seek a social life (without AIM and YIM I’d be very lonely), or do any of the hundred other things that become extremely hard when you have executive functioning fail. Don’t even get me started on social things: Just because I’m warm and personable and my areas of interest are more socially acceptable does not mean that I’m not struggling to navigate social mores!
*sigh*
That was actually really nice to get out.
How little imagination Dear Prudence employs – my first thought, given the balance of stuff the disabled guy can and cannot do, is that he might have a condition like rheumatoid arthritis, which could be causing pain and difficulty with stuff like reaching, stretching, lifting heavy things (i.e. shopping and doing laundry)… but no, he’s a young male, so apparently he must be malingering. The letter-writer’s “his condition is real” is so tossed off, like she’s had it drummed into her by her more empathetic parents but doesn’t quite buy it herself. She should definitely talk to her brother more and hear his side of it.
Also, it frustrates me that when people see a disabled person doing any activity (e.g. driving, or socializing), they assume that means ‘driving/socializing/whatever without any problems’. Whereas I can think of one disabled friend with RA for whom driving is a trade off – it means she can get to social engagements, but the driving posture is still painful and tiring for her.
Maybe the disabled guy’s parents are far-sighted enough, unlike their daughter, to say, ‘Okay, there’s all this stuff he can’t do, but dammit, we’re not going to stand by and see him marginalized in society, with all the attendant emotional/mental health implications, so let’s provide him with a car.’
Re: my above comment:
Damn it. “Far-sighted” seems like a very sucky ableist expression, now I think about it. I’m sorry.
Wow, this post is incredibly timely and illustrates perfectly many of the life issues I’m experiencing. I’m twenty-five years old, I’ve been ‘officially’ disabled since 2008 but had been disabled since the age of seventeen.
The man described in the letter sounds very much like me. I have fibromyalgia, Small Fiber Neuropathy (degenerative nerve disease), hypothyroidism, ADD, LDs and chronic mental illnesses as well. I don’t often ‘look sick’, even on the days that I use my cane to get around. I tend to present well, friendly and usually amicable even during flares and bad days. I do go to college (I’m able to take two classes at a time), spend time with my boyfriend and friends when I can, and often downplay the severity of my illnesses. I also live at home with my parents; I pay room and board but often my physical symptoms really limit the chores and ‘helping out’ that I am able to do. Thankfully, my parents understand the situation and are quite supportive. But it bothers me, being unable to give back and I feel guilty.
People on the outside often assume that I’m lazy, immature, spoiled, unhealthily dependent, coddled, unwilling to step into ‘the real world’, etc. I often feel like a failure, even though I’m working on getting my own place and becoming self-sufficient; to become a ‘productive member of society’.
What is the definition of “productive member of society”? A job-holding taxpayer? A person with a separate place of residence? A person with a college degree, or even a high school diploma?
Who gets to decide, anyway? I’m a musician, an artist, a writer; among other things. Are the arts not enriching to society? Are the arts ‘productive’? Can the arts only be seen as ‘productive’ if there is financial gain involved?
It seems like the term “productive” is a very subjective term with a very narrow/exclusive definition.
Ah, sorry about the rambling, I have so many thoughts that it’s tricky to keep them organized. I hope this comment makes some sort of sense, as well. Like the poster The Untoward Lady, it feels great to get this stuff out. Thanks for this incredible blog!
More often than not, I am helped to do my laundry, my grocery-shopping, and my errands. Less strenuous things I can often do… so long as there’s someone who interacts well with me around to help me out: to get me going, to prompt me when I get stuck, to get me to stop — just in general to keep me on track. Lots of things I can do if that’s so but I can rarely do those things otherwise (like if I’m alone or with someone who isn’t good at helping me like I said). I have trouble because people think if I can do things with help or do things sometimes, that must mean I can do them alone and whenever I want to. Totally not true.
There have been things I didn’t do simply because they weren’t offered to me to do. Like drive. For a couple of years, when my mom would help me with errands, she would always drive. I didn’t ask her to, it was just that she went ahead to the car and got in the driver’s side and I didn’t object. That is, I didn’t object until I found out she was afraid for me to drive, thought I couldn’t, etc. Then I made it a point to drive because I’m not willing to let someone make my disabilities more limiting than they are.
@Kaitlyn: I’ve got one worse. A couple months after my DOCTOR told me I should drop out of school and file for disability, she asked me if I was going to school and where was I working. Definitely an occasion for jaw-dropping and stunned silence.
@Beth – it’s one thing when the nurses/admin at Dr. Ego’s office ask me if I’m back in school yet (end of summer) but DAMN. “Um, no… I’m not at school…” Wow.
The doctor who told me to drop out of school doesn’t even acknowledge me as a patient as I learned the next day. (Everything’s taken care of when it comes to school and insurance. Deep breaths. Bollywood. Baseball. Hrithik Roshan. The Yankees losing. Breathe.)
My PCM’s office is awesome – but when I called and asked them to fax a note to the school saying I couldn’t go, they said I had to come in and do a series of tests, like range of motion, how long can I stand.
That’s not the bloody point! I can sit at a desk for hours, I can even sit in one of the old, tiny ones in a room that’s too hot for 3 hours. Will I be able to think? of course not.
Thankfully, the doctor understood and I didn’t have to do any kind of tests.
One more “You can(‘t) do X, so…” In December, I was all a-flutter at the idea of seeing “3 Idiots*” in the theater (so awesome!!!!!) and my mom was like, but it hurts to sit upright (true). “Bollywood is a painkiller!!!” (also true)
*I can’t defend the title. That’s what the characters called each other.